Hannah's Story

The Crash...and the aftermath

2012-01-13T10:40:00.000-06:00

It has been two years ago today since I was awakened by a familiar scream. You reached for me, grabbed my gown, and started seizing. Your muscles were so seized I could not get my gown from your grip . I had to get help from others so I could give you medications that would hopefully stop what was going on. Unfortunately nothing stopped it, and I would never hear that familiar scream again. That blood curdling, heart stopping sound you'd make when you went into a seizure. Oh, how I had prayed we'd one day not ever hear it again, but this was not the way I wanted it to end.

I barely remember last year and what I was feeling. The entire year was a daze. I was dreaming in the early hours of this morning. I dreamed I was on a winding bridge on a highway. Cars were coming behind me and all of a sudden my car stopped. It just died. I knew the other cars were going to hit me and it was going to be really bad. We'd all likely go over the bridge railing. I remember grabbing the car and person behind me through the broken crushed glass and metal of mine and saying, "Hang on! I won't let you go. You just hang on to me." I clung to the other person and their crushed mangled car through the horror of the flying debris, jolts, jerks, flips, rolling, falling, and eventual landing of our vehicles. Through the entire incident I maintained eye contact, smiles, and even a few words with the person I clung to. When our vehicles finally landed I let go of my companion and they did not survive. I just sat there broken, bleeding, and torn apart crying. I woke up as I was telling someone that I shouldn't have let go. It was 5:15 a.m.

The night before the doctors told us you would not recover I went to the shower. While in that shower I knelt and prayed. I cried and begged God to let me keep you, but I also surrendered to His will even if that meant He took you. I knew I'd never understand it and the heartbreak would be something I'd never recover from. I had no idea how I'd ever live without you. Your little life was so hard physically, but Oh how incredible was your spirit for that life. How in the world am I going to live without you!?!?!?

Your seizure was a lot like that crash and I'm living in the aftermath. It may have been two years ago but we're still in the aftermath. I wake up everyday wishing you were here and then deciding how to do my day without you. Some say it gets easier. I don't see it. It's not easier. Living without you is a daily decision I make and to be honest some days I just won't make it. I crawl back in bed, put the covers over my head and just stay there. Most days I miss you and then put one foot in front of the other. Who knows what the day brings. God's good and He always orders mys steps and puts surprises all along our path. I trust in His goodness.

I spent the first year in a daze. A numbness settled in, and I was able to get through a lot of what goes on in the first year while being snuggled in that numbness. This second year the numbness has lifted and I've had to live in a realness. The realness that you're gone and what that means. It's been extremely painful to say the least. I haven't written a lot which I love doing. Mostly because as anyone that reads this can tell, my realness hasn't been very pretty. It's a realness that I'm uncomfortable with, and it makes other people uncomfortable too. People I talked to everyday for years, I may only talk to once or twice a year now. Change whether invited or not, is here, and some days I embrace it...others, I hide from it.

So, here's where I'm at my beautiful Hannah. I'm living in the aftermath of the crash. I think a lot about how I shouldn't have let go. That comes from missing you like crazy! I want you with me. I know you can't be here and that you're in the most capable hands of all. I still trust in God's goodness and His love for you, and for me. You're always in my heart and not a single day goes by that I don't miss you or want you. You blessed my life and it will forever be richer and better because I had you. All my Love today and everyday! Mommy

Revelation

2012-01-08T13:22:00.000-06:00

O.K. so, if you see me stand in church grasping and clinging to David's arms with tears streaming down my face while we sing the "Revelation" song, please know that I'm not insane. I'm feeling immense pain and immense joy at the same time. Hard to know what to do with that and it almost always leads to tears and me clinging to her daddy. The "Revelation" song was one of Hannah's favorites. I can promise you that it's one we sang together every day at least, the last year of her life. Now when it's played or sang I miss my girl so bad but then I start thinking about what she is experiencing in heaven and I'm joyful for her. So if you were wondering...now you know. LOL!

In case you've never heard the song here it is...

Christmas In Heaven

2011-12-24T09:33:00.000-06:00

Santa Claus Is Coming To Town

2011-12-24T09:32:00.000-06:00

Hannah's Christmas 2011

2011-12-20T23:57:00.001-06:00

Hannah's Sponge Bob Christmas 2011

For The Cemetery

Hannah's last Christmas 2009

Our lawn decoration this year in honor of our girl

2011-12-06T00:10:00.001-06:00

I don't ever want to forget this precious face and how much I miss the beautiful spirit of my girl. This is a photo of her last Christmas. She loved this silly Santa hat and she always had to do that crinkle nose pose when she saw the camera. Not a typical framed photo but it embodies the spirit of our girl so well. I had to have it to display when we decorate for the holidays!

This has been a rough Christmas. It's our second one without her and my heart has been broken constantly. I KNOW the reason for the season and it does help, but it doesn't remove the pain or emptiness that not having her with me brings. I don't write much anymore because I'm in the ugly phase of grief right now. I'm not into sharing ugliness. The world has enough without openly adding mine.

Love to you all and I hope your Christmas was great and your New Year brings all the hope and joy you deserve!

Keep watch....

2011-10-14T23:40:00.000-05:00

Part of Hannah's story with Koolio will run in a magazine soon. Once I have more details I will let you all know about it.

Still missing my girl every single day. So very thankful I had my beautiful Hannah in my life. I'll never forget and will tell her story as long as I have breath.

18 months

2011-07-15T22:40:00.003-05:00

On Sunday my precious girl will have been gone 18 months. I'm not sure what I expected it to feel like, but I'm sure I thought it might be a tad easier at this point. It's really not. The huge heavy lump that sits in the center of my chest has not moved. I still feel her loss everywhere I turn. It's hard, very, very hard.

That being said, God has been so good to me. He has sustained me and sent me just what I needed, when I needed it. He's been so creative in His provisions for me and kept me in awe of how He works. I have been assured of His love for me like I've never been before. I'm so grateful that I know Him.

I'm still going to school. I'll probably go until I can't go anymore. I have no real idea of the direction I'm going. I do not know what my career choice is called or what it looks like. Right now I'm just going the psychology route because I love it. Especially developmental and neurological. It'll be interesting to see where it all goes. I just ask God every morning to order my steps and trust that my future is in the best possible hands.

I'm also still working. I love my job. I feel so blessed to do what I do. I work with adults who have some type of disability to get jobs in the community. It involves assessing their abilities, teaching them job search skills such as interviewing, and then job coaching once they get the job. I've got a wonderful boss who puts up with my my constant "ideas". In case you didn't know I always have some kind of idea brewing or search/research going. It can be annoying to some but bless Kay's heart she lets me be me. It's great!

Next weekend I will have 7 of my 8 nieces at my house. I can't wait! I can't help but think how much Hannah would have enjoyed them all. She would have been right in the middle of them entertaining them. We'll have fun and I am looking forward to my time with them. The boys are doing good. Kyle will finish up his basics next semester and is looking into transfers. Zach will be a senior and he has a sporting entertainment internship so he'll be one busy and happy guy! David is a member of the Good times chorus here in Arlington. His first performance is coming up in August. They're all doing good and I'm proud of them.

So, as this 18 months without Hannah come and go, I can tell you that I still miss her as much as I did the day she left me. I find myself more thankful everyday that she was part of my life. She still touches my life so deeply. Every time I assess a client and use her "matching" cards, I have to smile. I miss playing "matching". I'd give anything to have her here on my bed right now with all those cards laying out. I'd play as many games as she wanted to play. I'll always want her here. That's the momma in me. I can't wait for a day when we're all together again. What a day that will be! I cling to that and it is comforting. Until then, I miss her, want her, and trust in a God that holds my future, just like he held hers.

Thanks for the continued support and prayers! They mean the world to us.

Dear Hannah, I miss you! I miss you! I miss you! I thank you so much for all you taught me and the life you shared with me. You were and still are my inspiration. I was and still am so proud to be your momma. I love you sweet girl. Always! Momma

In my Dreams....

2011-06-05T18:54:00.000-05:00

We took the boys to Hillsboro yesterday to see their friends. Kyle has seen his a few times, but Zach has gone an entire school year without spending any time with his pals. I'm glad he is able to go and have some fun with familiar faces.

While there we decided to stop by the elementary school and see Hannah's memorial bench. She would be leaving this school this year and moving up to the Intermediate school. No doubt it would be a huge transition and one I'd have spent countless hours making as smooth as possible.  I'd have spent the summer anxious about how it was all going to go, and it would all be for nothing, because she would walk right in and make her place. Her teachers would fall in love with her and I'd walk out kicking myself for all those hours of worrying and stressing I did. Hannah loved going to school. As we stood there looking at the bench, all of us emotional as we were reminded of Hannah's impact on those that knew her, I didn't feel sad for Hannah, but I was sad for all those who will never know her, and for all of us that have to wait to see her again. Hannah just had a strength and joy for life about her that was contagious. Our world needs more of that.

One of the hardest things about having lost Hannah the longer she is gone, is that I worry I'm going to forget how she felt, sounded, smelled, etc. That I won't remember some of the things she said or did that were so very precious. Sounds silly, I know, especially since we were pretty much attached at the hip. She was a part of everything I did. At any rate I miss her, and it hurts tremendously not to have her here to hold, talk to, and touch.

Dreams are something I've experienced my entire life. A night rarely goes by where I do not dream something. They are usually random, very chaotic, and senseless. I'll wake up feeling almost hung over and battling to make some sense of what it was all about. Usually I just have to shake  my head, clear the chaos, and get about my day. However, since Hannah's passing I've had two very vivid dreams about her and they are totally different from the ones I normally experience. During today's nap I had a third. Hannah's birthday was Monday. She would have been 10. It is the hardest day by far for us as a family I think. Hannah fought from the day she was born to live. She fought a good fight, living everyday joyfully and loving life though all her pain and difficulties. It's really easy to get into thinking how senseless her death is and how unfair it is that she lost her fight.  Believe me I know all about how our goal is to fight that good fight and that we're all going to ultimately lose, and how to lose is to gain. I get it. I really do. I have learned so very much about God's plan and letting Him control my life, and the only way I have an ounce of peace right now is trusting that all He does is for good. I literally roll Romans 8:28 around in my head hundreds of times a day. I said all that to kind of set the stage for what I'm about to share.  I've been missing Hannah and concerned about losing "touch" with her. I never want her to be reduced to the few things of hers displayed in a glass case as you walk in my door or a picture on the wall. I've been troubled and grieving my loss this week. Today I took a nap, and during that nap I saw Hannah. When I touched her hand it was so very real. I could feel it, I could kiss it. I must have said, "you feel real", because she answered, "I am real momma. Kisses!" At that point I knelt to kiss her forehead and got a precious whiff of her skin. I gathered her in my arms and she just laughed. We sat for a while and I knew my time was ending with her.  No one said it was, it was just a feeling. I said out loud I was afraid I'd forget. Hannah told me that I wouldn't, that tickle tickle man doesn't want me to.  "Tickle tickle man?", I asked. "Oh yeah momma, He is tickle man.  He loves us so much. Sometimes he puts his beard on just so I can play with it and then He tickles me all over." I said, "Is God Tickle Man Hannah?"  She responded, "Oh yes momma, He is, He is anything I need Him to be." At that moment, she hopped up, kissed me and said she had to go. I sat there smiling. Seriously, I was smiling as she left me. Then I woke up and have spent this afternoon with the words, "He wouldn't let me forget because He doesn't want me to, He loves us so much, and He is anything I need Him to be" rolling over and over in my head.

Some of you will think I'm crazy. I can assure you I am not. I'm pretty sure I can get a few mental health professionals to attest to that fact if we need it. It was a dream I know.  It wasn't real, but it felt real, and I needed that. I needed to access that part of my brain that remembers vividly the way Hannah's skin felt and smelled. I needed to experience that sweet loving joy for life that only she could exude. Today, I'm just thankful. As I end this hard hard week without my girl and reflect on all her life meant to me, I also have to think of all God did in our midst and continues to do. He's faithful.  The only way to happiness in this life is to fully trust in Him. I'm not there yet, but I'm oh so much further than I have been. Thank you friends for your continued prayers and support.  Y'all are the greatest! To all my fellow special needs mommy's, please know that y'all are in my prayers everyday. I love your kiddos and I'm forever indebted to you for sharing your lives with me.  God Bless you all!

To my Hannah,
I love you sweet sweet girl! Enjoy Tickle Tickle Man and all His love for you! I'll never forget. Mommy

Happy 10th Birthday Hannah!

2011-05-30T23:07:00.000-05:00

Today was a tough day. I woke up with a heavy heart. David and I both spent the morning crying, missing our girl so bad. I watched all the little videos I have of her. Sometimes it feels like a dream that I ever had her at all. Watching the videos makes it all feel so real again. I discovered that our bank account information had been compromised and charges from London charged to our account so I had to deal with that. No fun! Even with all I dealt with we were able to get things together and headed out. All four of us had lunch, bought some balloons and headed to the cemetary. It was extremely hot and windy. The wind was so bad that it tangled all the ribbons within minutes and I there was no way to untangle them. We had to let them go all together. That was not my plan and I felt pretty defeated that the day had been such a disaster to that point. All I wanted to do was honor my baby girl on her Birthday. It's just life. Some days are good and some days are not. The only thing we can do is put one foot in front of the other and trust God to see us through. We ended the day celebrating a wonderful friend's birthday with "the hood". Just what the doctor ordered. Now, I'm sitting here typing this and thankfully listening to my wonderful husband snore. God's good. Thanks for all your prayers today and everyday. I've said it before, but I believe it with all my heart, your prayers see us through. Thank you!

Now to my Hannah...

Happy Birthday Precious Girl! It's hard to believe that we've just celebrated the second birthday without you. I miss you so terribly much. It's days like this when your death feels so totally senseless. I'd do it all over again beautiful girl! I was so truly blessed to have been your momma. I hope they have chicken nuggets and cake cake in heaven. You are so very loved and missed! Happy Birthday to you...Happy Birthday to you...Happy Birthday dear Hannah...Happy Birthday to you! All my love! Momma

These are all pictures of Hannah's grave, Bday wreath, & Memorial day flowers.

Also Billie's Spring bouquet.

The wind was really bad and tangled the ribbons on the balloons so bad they couldnt' be untangled. We had to release them all together this year. 10 balloons for 10th birthday.

Sponge Bob Birthday balloon.

The wreath I made for Hannah's Birthday! I wanted her to have something with SpongeBob.

McDonalds

2011-05-21T09:50:00.001-05:00

Every day of my life with Hannah the last couple of years, involved one and maybe two drive through trips at McDonalds. Not the healthiest, I'm aware, but when you have a child with autism learning to communicate and they do communicate those preferences or desires you've so longed to know and understand, it's very difficult not to reward that. If you don't, it may not continue. Anyway, several days a week I would run through the drivethrough of McDonalds, get her some mcnuggets and drop them by the school for her lunch. Then she discovered the vanilla shake.  We were getting a friend an ice cream and I knew Hannah couldn't handle one, so I got her a shake instead. She fell in love with them and everyday after school she'd get in the van and say, "hi momma, shake shake, get Zachary". We had several minutes between her pick up and getting Zach from high school so I'd swing through the drive through, grab her a shake and she'd sit there sipping away, singing, and talking while we waited on Zach to come out. Those were some precious precious moments. I loved that time where she'd make up little songs with me about how Zach needed to hurry. At any rate, that's just a little background so you'll understand what I'm about to tell.

I've really struggled with McDonalds.  Especially the one in Hillsboro. It just hasn't felt right to go when my baby girl can't. Last week I was heading through Hillsboro and I was hungry. Hadn't eaten all day and Hillsboro is still an hour from home.  McDonalds is right off the interstate and convenient. I thought I could go through. It's been a long time. The minute I turned into the parking lot I felt a heaviness settle on me. I got to the drive through and I ordered just what I would have for Hannah. I glanced back where she would have been sitting and I felt a wave of grief wash over me. I got my order and I know the drive through attendant thought I was crazy because tears were streaming down my face. I stopped for a minute and set everything up so it was accessible while I was driving. Then I took the first bite. It almost wouldn't go down. I took the second bite and I cried uncontrollably. I began talking to God about how unfair it was that I could eat nuggets and Hannah couldn't.  So much came pouring out of me. I wanted to know what it was.  I let you have her but why. Was I not a good enough mom? Did I do something wrong? Why did you want her and why now? Most of the time I am rational and know that there are no answers and I know I have to trust God's love for me and for Hannah. I dont' see the whole picture, He does. It still can't help but feel like a punishment sometimes that she is gone.  Finally when I was completely spent and satisfied that God heard me and still cared. I finished my nuggets and decided that every time I ate them I'd remember my girl and it was good to remember. I long to remember. The thought also occurred to me that who says there are no McNuggets or vanilla shakes in heaven. Even if there aren't, there is probably something so much better. Hannah's not missing out on anything. I'm the one missing out. Someday though, there will be no missing out for me either. Until that day....I'll remember.

Love and Miss you baby girl!

2nd Mother's Day Without you...

2011-05-09T00:05:00.000-05:00

Today was my second Mother's Day without you. Another card without your precious markings. This day is so bitter sweet. I miss you. I wasn't up to doing much today. I did go out to luch with the boys and it was good. Your brothers are sweet Hannah. I know they miss you too. Daddy was missing nanna a lot today. I know y'all are enjoying each other and the beauty of all that surrounds you. Schools coming to a close. It's been so hard not having you here to get ready to go every morning. I just miss you baby. I miss you so bad. Wish you were here. Love Always, Mommy

Shoes

2011-04-11T09:36:00.000-05:00

I was cleaning last week and found your shoes and your favorite socks. You know the ones that were way too small for your feet but you insisted on wearing because they were your favorites. You'd had them since you were 2. It reminded me about how I used to have to hide your shoes when I took them off because if you saw your shoes you wanted to go to school. No matter what time it was or if school was out, you thought shoes...school. You even threw them at me once because I refused to put them on you and take you to school. School wasn't in session that day. I'm so glad I let you go to school. I'm so glad I put all my fears aside long enough that you were able to enjoy something you loved. I miss you Hannah. Everyday. I'll cherish your favorite socks forever and remember our "fights" over wearing them eternally. Thanks for such a great 8 years sweetie! They were way to short, but I was given a lot to cherish in that short time. Miss you bunches! All my love! Mommy

My inspiration

2011-03-31T13:45:00.000-05:00

Hannah dear, I'm really missing my inspiration. I love to write and have nothing to write about with you gone. Thank you for all you gave me precious girl. I sure wish you were around so I could love on you, and do the thing I love. It's been impossible without you here. Guess I never was a writer after all. You just did things that were easy and fun to share. Love ya sweetie and miss you with all my heart.

Folks, It's getting harder and harder to write, and things are definately becomign so final for me. It's been over a year and I think it just now is settling in that my girl is gone forever. I'm sorry. I dont' know how much longer I'll keep this blog around. It's emptiness of words leaves me depressed. Thanks for all the support through the years.

East to West

2011-03-18T00:27:00.000-05:00

Today's been a tough day....actually the whole week has been tough. You've been gone 14 months today. It's our favorite time of year Hannah and you're not here to enjoy it. Spring doesn't hold the joy it used to. You loved to be outdoors and this time would be the time before it got to hot for you to. You could enjoy the outdoors without your cooling vest and that made you super happy. We'd sit out back and throw tennis balls to Koolio and pick the weed flowers forever. You never wanted to go in. I'd give anything to have you here to do all that with right now. It's hard to even breath in the Spring air and not feel your absence. My hearts heavy. Your loss changed everything. Everything is different. It's something I don't like or enjoy but I'm trying to make the best of it. I so wish I didn't have to endure this change. I'd do anything not to have to. I'm still trusting that God has a plan and that when my life is over I'll see your beautiful face again. What do do till then is tough to understand or figure out. I'm trying though. I love you sweet beautiful angel girl. I hope your happy, thriving, and being loved so fully. I have to believe you are, for I ask God everyday to love on you until I can again. Miss you more than words can express. Mommy

Remember Hannah & support epilepsy awareness

2011-03-06T00:30:00.000-06:00

Please wear purple March 26th! Do it in honor of Hannah and help raise awareness of epilepsy!

13 mths

2011-02-18T13:16:00.000-06:00

I still miss you terribly Hannah! It's been a rough couple of weeks. I wish you were here. :(

Good bye's and Hello's

2011-01-23T11:54:00.000-06:00

My brother and sisters said our final good bye's to our dad last night. When I left him he had Hannah's names on his lips. She enjoyed playing with pawpaw's beard. LOL! I said good bye, but Hannah is saying hello. RIP dad. No more suffering.

Honoring Hannah's Memory

2011-01-22T10:26:00.000-06:00

Thank you KLTY 94.9 Christmas Wish!

Have we lived a year without you?

2011-01-17T10:56:00.001-06:00

Dear Hannah,

It's been a year today since I held you and sang "I love my Hannah, she loves me too, I love my Hannah, in everything we do" as you left left my arms and went into the arms of your Jesus. The very fact that you persoanlized Jesus as yours, is more precious to me everyday. He is your Jesus Hannah. He always was.

The last few days have been a time of missing you intensely and reflecting on our life with you and without you. I would have never dreamed I'd survive the year without you. It's been very difficult. There have been miles of tears. Some days I literally feel like my heart is going to burst out of my chest and shatter into a million pieces. Losing you is a hurt that will never leave me. I loved you so much.

I found your flashcards and the indian hat you made at school for Thanksgiving. I put your hat on my head, sat on our bed, and longed to call to you, "Hannah, let's do numbers!" You called all your cards numbers whether they were words, letters, or really numbers.  I remember we had to do "numbers" and then "matching" and we did that over and over many times each day. You were so smart!  I had to make sure I mixed the cards up each time, because you'd memorize the order the first time we went through them, and tell me what they were without even looking at them. LOL! Those were some precious times to me. Some times I'll cherish forever.

The boys reminded me yesterday how you would fake burp and then say "excuse me". I dressed you like a little lady but other than loving shoes and beads you weren't much for girly things. I was so excited when you decided to like one of your baby dolls, and out of all the dolls you could have chosen, you chose the ugly bathtub baby. LOL! You were a hoot! Unconventional in so many ways, that made you uniquely you, and we loved you with all our hearts.

I could easily go on forever about all the things you did. Every one of us have stories of what they remember about you, and the special, funny, things you did. You affected everyone in ways no other person could. We're all so grateful to have known and loved you.

Personally Hannah I think you were a gift sent straight from heaven to your momma and everyone else just got to reap the benefits of the gift. Loving you and caring for you activated all those things in me that somehow, through the years, just got lost. My self esteem, my confidence in my abilities, my love for writing, my love for learning, my love for people, my faith in people, my faith in God...the list could go on and on. My life became so rich during the years I had you, and even since. Because of you, I met incredible people who have been a huge influence in my life, and who have been so instrumental in helping me get through this year without you.  Having had you is what qualifies me to work where I work now. It's because I had you that I am going back to school to do what was always in my heart to do.  You helped build my confidence, and you helped me find my voice. You gave me reason to write and learn again. Because you lived and touched so many lives, my love for people was discovered, and my faith in people restored. It was through watching your life, and seeing your response to all that came you way, that my Faith in God was challenged and restored. Yes, dear beautiful girl, you were a gift. I wish you had been a gift I could have physically had with me forever, but oh how thankful I am that you were with me for the 8 wonderful years I had you.  I feel so incredibly blessed.

So, as I set here this morning with messages from all that loved you pouring in, telling me that they are remembering you and praying for me, I have tears rolling down my cheeks, but with a smile on my face. There are both tears of sadness and gratitude. I miss you more than I can ever express. I wish you were here with me. I long to hear your beautiful voice and touch your precious face. One thing I know is that I will get to again. You will one day take my hand and show me heaven, and I will long for that day until it is here. I am patiently waiting. In the meantime, I am grateful. I'm grateful for all that you have meant to the people who knew you and even some that did not know you. I am just grateful. Sad....but oh so grateful. You will forever be remembered and loved. Never Forgotten...

All My Love,
Mommy

To all the people who love my girl....thank you. Thank you first of all for loving her. Thank you for standing by us, holding us up with prayer and support. Please continue to pray and support us. We can't do this without you. Finally, don't ever forget her. Ttalk about her...tell your Hannah stories...laugh...smile....even fake burp and say excuse me in a froggy voice...Just remember. Never forget.

Hailey

2011-01-15T11:52:00.000-06:00

I am writing this here because I know that Hannah's friends were the most powerful prayer warriors ever for her. A little girl named Hailey has been in the hospital with seizures since before Christmas. She went into status yesterday and is still in status today. Status in the epilepsy world means a nonstop or continuous seizure. It is very dangerous. It is what took Hannah's life. Please pray for Hailey and her family. Her mom's name is Tami. We need a miracle for this little girl.

It's a little ironic that a year ago today I was requesting prayer for my own little girl who was in status. Oh, how I hope and pray that Hailey gets to go home with her mommy. We miss Hanah terribly and no mother should experience that kind of loss. God's provided strength, courage, hope, and renewed faith in this last year but the almost unbearable hurt of a life without Hannah is always present. She will forever be missed and we have a huge hole in our lives that can never be filled.

Thanks for the prayers and support. We love y'all!

Happy New Year 2011

2010-12-31T19:42:00.000-06:00

Dear Hannah, I can't believe I'm going to start a new year without you. I miss you and I miss all the fun times we had so much. I'm not sure what life is supposed to look like without you here with me. I know you're always here, but it's hard without your physical presence. I'm still pretty lost although God seems to light my path just enough for the next step, and for that I'm thankful. I can't wait to be with you again. It's not my time yet, so I am waiting. We know how good I am at that! Please know precious girl that your missed and loved more than can ever be expressed. I will never forget and I won't allow the world to either. Thanks for all you've meant to me and continue to mean. For the past 9 years my New Years wish and prayer has always been the same...that you'd have a seizure free life. You're seizure free now, but my wish and prayer remains, not for you, but for all the other kiddos out there like you. May their parents know a day where life is seizure free, and may no more children leave their mommy's too early. Happy New Year sweet girl! Love Always! Mommy

Merry Christmas Hannah

2010-12-25T11:56:00.000-06:00

It's nearly unbearable without you today but I just keep reminding myself that your Christmas this year is better than any we could have ever provided for you. I told your daddy that I'd give anything just to go back to last Christmas and stay there. It was just so beautiful and magical. I loved the time I had to spend with you and all the fun we had together. You were so much like your daddy. Kept us laughing all the time. I'm often told you got your strength from me, but I don't know. I think you inspired me to be strong. You inspired me to live. When I think I can't go on I often think about how you lived in the midst of great obstacles and it leaves me excuseless. I miss you terribly. Words cannot express how much I miss you and wish I could hold you in my arms. We're o.k. though. We're making it. All the people that loved you continue to love us and support us. Thank you for being the best daughter a mother could ever have! I will love you always and will never forget baby! Never! Merry Christmas!

Sponge Bob Christmas

2010-12-20T22:28:00.000-06:00

I wanted to put something SpongeBob related on Hannah's grave. I threw this wreath together

and was glad to have it. I miss my girl more than I can ever express right now.

Merry Christmas Hannah! I love and miss you my precious girl!

You Wouldn't Cry For Me Today- Mandisa

2010-12-17T12:35:00.000-06:00

Christmas Memorial Service

2010-12-04T11:35:00.000-06:00

Our church's greif share department had a Christmas memorial service in the chapel Thursday night. They said to bring an ornament that represented our loved one. David and I went shopping and was unable to find anything. I was pretty disappointed and bummed. A sweet lady we went to church with in Hillsboro asked her daughter to look while she was out shopping and she found one. It's a sponge bob ornament. Sponge Bob is all tangled up in Christmas lights. It was perfect. I'm wishing I had taken a picture of it now and still may when they move the trees into the welcome center.

We really didn't know what to expect from the service but it was nice. We cried, laughed, and then cried again. The pastor spoke to us and talked about Jesus being the light and how death doesn't win. Our seperation from our loved ones is not eternal. We will see and be with them again. All because Christ defeated death. It was a powerful reminder that we will be with Hannah again. I will wrap my arms around her and and kiss that beautiful forehead again. That's comforting.

After he spoke we each went to the front and hung our ornament on one of the three trees there.  Most of the peole hung photos of their loved ones or an angel type ornament on the trees. Ours was the only cartoon character. LOL! So, when they move the trees to the welcome center it should be an interesting sight. SpongeBob is in the church house y'all! Hannah would love it! :<)

The holiday's are terribly hard without her.  I find myself crying tears often and everywhere I look I see things that she would love. Around the corner from us is a blow up Sleigh that has Eyore, Pooh, and Tigger on it.  I can't help but imagine I'd have to take that route home everyday had she been here. It hurts your heart. It's a hurt that is indescribable.  Still, we just breathe and take the next step in the day.

I think the boys are struggling hugely with this holiday thing.  It's hard enough that nanna isn't here. Nanna loved Christmas and she lived with us the last 8 years of her life. She'd get that fat JCPenney catalog every year and the boys would sit and look at it and tell her what they wanted. Then this is the first year without Hannah and I think the boys had as much fun helping her enjoy Christmas as they did themselves. It's different this year. New for us. We just don't know what to do with ourselves because everything we've always done is not doable.

The one thing that doesn't change is the reason for this season. JESUS. It is in him we have hope and it's because of him we'll all be together again some day. For that I am eternally grateful. I miss my Hannah but one day I'll see her again. All because a baby was born, grew up and died on a cross for my sin, and rose again defeating hell and the grave. Halelujah!

Love you all! Thanks for the continued prayer and support. It means the world to me!

Klty Christmas wish

2010-11-27T11:29:00.000-06:00

What I'm missing...

2010-11-24T13:57:00.000-06:00

I'm finding more and more things I'm missing about Hannah as I get ready for Thanksgiving. I'm really missing having her under my feet with all the chatter. I miss her playing in my sink giving the dishes bubble baths, I miss her saying over and over, "it's hot, very hot, yes, it is!" She'd also tell me everytime I walked out of the kitchen..."it's time to cook dinner!" and would say it until I went back into the kitchen. I so miss having to stop between tasks or in the middle of tasks and having to do the dino dance or have a time of worship singing, "I'll Fly Away or You Deserve the Glory". I just miss this girl so very much and wish she were with us. As I let Kyle out at work A woman was walking out with her little girl and she had on those little play shoes. It stabbed me right in the heart. Hannah loved those shoes. Clomp, clomp, clomp all over the house. I miss my baby. Love you Hannah! Always!

Thanksgiving

2010-11-23T08:51:00.000-06:00

I'm thankful. What I'm thankful for has changed somewhat, in a way, well, not really.

Last year I was thankful for seizure free days and the way Hannah's world had been opening up. She was having an incredible year developmentally.  I thanked God every morning when I woke her up for one more day with my girl. I remember that I must have said it so much that she started saying it for me..."Thank you Lord for another day with my Hannah!" It was so adorable and the fact that she spoke in third person made it just precious.

This year as I reflect on the year I find myself still thankful that my girl is seizure free, free from sickness, free from the pain of needles, free of the limitations of autism. Everything I wanted for her here she is experiencing in heaven.  I'm so very thankful for the nearly 9 years I had her in my life and for everything that her life meant to me. I will never be the same person I was before Hannah. She taught me some powerful lessons that changed my life forever. I just feel so incredibly grateful that I had the privilege of being this amazing girl's mom.

Thank you God for allowing me the time you did with our precious Hannah..  Thank you for holding us up and sending people into our lives to help us keep putting one foot in front of the other. We are eternally grateful for your love and care. Take good care of our girl. Give her a hug and kiss from me and could you sing our Turkey song with her, (sang to the tune of Frere Jacques) "Mr. Turkey...Mr. Turkey...Big and Fat...Big and Fat...I am going to eat you...I am going to eat you...just like that...just like that. (then make smacking gulping sounds). Tell her Happy Thanksgiving and we miss her!

Thanks to all my friends and family for continuing to love us even in the middle of great change in our lives. Your love and support mean the world to us. All my love, Marcey

Sunshine

2010-11-13T07:54:00.002-06:00

You are my sunshine...my only sunshine...you make me happy when skies are gray...you never know dear how much I love you...so please don't take my sunshine away...

Hannah and I would sing this song daily. I loved the sweet way she said the words. Precious moments I'll never forget. Never. I can't tell you the number of times I'd sing the last phrase of that song with tears in my eyes. Something in me, although I wouldn't admit it, knew I'd not always have my girl with me. I'm thankful for all the time I spent with my girl and all the fun we had. I do however wish I had spent more time and we'd have had more fun. I keep replaying the last couple months with Hannah in my mind and I can tell you that I'm extremely thankful for the prompting that I believe God gave me to put down what I was doing and spend time with Hannah. So many times she'd come in the middle of me doing something and I'd want to put her off only to feel a quickening that I do not know if I'll have tomorrow. I'd put everything down and spend some precious moments with my girl. Moments I'll forever cherish. I know it probably sounds strange to some, but it is what happened to me and I believe God gave me a gift in the quickenings. Time is truly a gift.  I'm grateful.

Hannah's bench is done and dedicated. It is beautiful and it's perfect. It is a project that I'm so glad we did and I'm so incredibly thankful for the artist; Linda Solby, Harwood, and HISD for making it a possibility. I started putting the bench project together in March of this year only months after Hannah's passing. It was fun and fulfilling to see it through.  Hannah's teacher put together the unveiling and she did an incredible job. It was all just perfect. The day after the unveiling I did not get out of bed or my PJ's until after 2 p.m. I found myself grieving and feeling like I had done the last tangible thing I could do for Hannah on this earth. It was a tough day.  Those come and go and I'm learning to go with the eb and flow of things. Not easy but it's my reality and I am learning.

The holiday season is upon us and I have found myself wanting to throw a hissy fit and ban it this year. I don't want to do Christmas without my girl. Another part of me can't help but remember the beautiful and wonderful last Christmas we had with Hannah.  I am trusting God to get me through in whatever manner he sees fit because I sure don't have a clue how to do it.  I'm thanking God that He has a plan and works things in such a way that only He can do. I"m confident we'll get through the next couple of months(Thanksgiving through the one year anniversary of Hannah's death) with the same grace and mercy that has lead us through the past 10 months. He's faithful.

We're all doing o.k. and I know that's in huge part to all the prayers and support from our friends and family. Thank you!

Bench Unveiling

2010-11-06T02:09:00.000-05:00

Yesterday was the unveiling of Hannah's bench. The bench is perfect and beautiful just like our girl. There were moments when we along with her classmates were singing her favorite songs that I could just imagine her looking down on us with that beautiful smile enjoying it all with us. How I wish she were here but I won't dwell on that. She will now always be a part of the place she loved so much and for that I am forever grateful. It was an amazing day and her teacher and school staff did an incredible job of honoring her. Thank you Harwood and HISD for making this a possibility and thank you Linda Solby for using your talents in such a marvelous way.

Some photos from the day.

Saw the bench in person

2010-10-27T20:47:00.000-05:00

David, the boys, and I went down to Hillsboro yesterday evening to see Hannah's memorial bench. It was delivered and set up Tuesday. The photos don't even do it justice. It is a perfect representation of Hannah's life and things she loved. It feels good to know she'll always be part of a place she loved so much. The dedication or unveling is next Thursday Nov. 4th at noon. If you can come we'd love to have you there. I'll post photos from the dedication for all to see. Please keep us in your prayers.

9 mths and final memorial bench photo before shipping

2010-10-17T01:29:00.001-05:00

It's been 9 mths since I held you hannah, and I miss you so. It feels like an eternity, yet it feels like just yesterday too. I miss you terribly and will never forget all you brought to my life and your world. The hole you left in my life and heart can never be filled. Thank you for being the beautiful wonderful little girl you were. My life is better because I knew you. I can't wait for you to show me heaven. Until I can be with you, I will work to honor your life and all you gave me sweet beautiful girl! All my love! Mommy

Final Memorial Bench Photo before Shipping. Should be delivered in next couple weeks.

Tomorrow will be 9 mths since my precious Hannah left us. I wish I could tell you that it has gotten easier, but it hasn't. In some ways it's harder. I worry about not being able to remember some of the things I loved so much about her. The sound of her voice, the feel of her hair, the way she smelled. It's so hard to grasp that we'll never see her again on this side of heaven.

All the things people say, because they don't know what to say, start to get on your nerves. I'm not being ugly but here's what I need. I need you to tell me memories you have of my Hannah. I need you to tell me you loved her. I need you to say her name. I need you to let me talk about her as much as I want to, and not talk about her if I can't. Don't ask me to call you if I need anything. Please don't make me reach out to you. If I come to mind or heart act on it. Don't leave me out of stuff because you think I may can't handle it. Let me make that decision for myself. That includes conversations. If you have a special needs kiddo, and you were part of my special needs world, please don't be afraid of me and please don't stop sharing your kids with me. You don't have to offer any words of comfort. Just tell me you love me and are praying. I know all the..."she's in a better place, you have an angel in heaven now, you still have the boys, she's not suffering anymore, she's got her nanna and uncle dewayne, etc" by heart. All that is true, but verbalizing it doesn't help. It doens't minimize or lessen the ache in my heart or the huge hole in my life. The old Marcey would have never said any of this, I know. I'm sorry. It's just hard...unbelievably hard. I'm pouring it out and hoping y'all will understand or at the least tolerate it and still love me.

I miss Hannah. I miss my life with Hannah. Some really great things are happening for us. We love our home and Arlington. I'm excited about opportunities that are presenting themselves. Honestly though, I'd give it all up if I could have the life I had with my girl even with all it's hardships. Hannah was an incredible life force. I miss it. I miss her strength and courage. I miss her love and sense of humor. I miss her quirky sense of style and love for shoes. Yes, I know she's in heaven and I wouldn't take that from her, but I do long to have her with me. Not a moment goes by that I do not wish I had her in my arms. I'll always long for her and miss her, and I don't believe that it means my faith is weak or lacking to desire her with me. My faith is intact and stronger than ever. Still, I would prefer she were still with me instead of heaven and I don't see anything wrong with that. God knows it. I told him the night before she died that I wanted her with me but that I'd let her go if it was time. I did let her go but I still long for her. I'm her mom and that doesn't change in death. At least you won't be surprised when you say to me, "she's in a better place", and I answer, "yep, and I'm glad, but I would sure rather she be with me!" :) Oh, and I went to a grief workshop with a grief specialist that has been on Oprah, Dr. Phil, etc. and he told me I was perfectly normal in my thoughts. I'm not crazy folks, my baby girl just died. Be relieved, I was. :)

All that being said, God has been so good to us and we are grateful. I do find peace in knowing that my girl rests in the arms of God. Every morning I ask God to give my girl a kiss and hug for me and tell her she was and is loved beyond measure. It's an amazing comfort to believe that He cares enough about me to grant that request. I'm eternally grateful that God continues to see us through this horribly painful time in our lives.

I know this blog post is a little different. I guess after being told today for the hundredth time, "at least you still have the boys, they need you", and "you have an angel in heaven now", I had to vent a little. I believe people want to be helpful, and I know I would never have known what to do in a situation like mine either. I do think I would be glad if a friend I knew was in terrible pain, told me what I could do for them. I love all of you so much! Pleae keep praying for us no matter what, and please don't be upset with this blogging post. I just had to get some things off my chest.

For anyone that has a friend/family member who has lost a child here is a piece of an article I found.

When Trying To Comfort Grieving Parents

DO:

Acknowledge the child's death by telling the parents of your sadness for them and by expressing love and support; try to provide comfort.

Visit and talk with the family about the child who died; ask to see pictures or mementoes the family may have.

Extend gestures of concern such as bringing flowers or writing a personal note expressing your feelings; let the parents know of your sadness for them.

Attend the child's funeral or memorial service.

Remember anniversaries and special days.

Donate to some specific memorial in honor of the child. Offer to go with the parent(s) to the cemetery in the days and weeks after the funeral, or find other special ways to extend personal and sensitive gestures of concern.

Make practical and specific suggestions, such as offering to stop by at a convenient time, bringing a meal, purchasing a comforting book, offering to take the other children for a special outing, or treating the mother or father to something special.

Respect the dynamics of each person's grief. The often-visible expressions of pain and confusion shown by grieving parents are normal. Grief is an ongoing and demanding process.

DO NOT:

Avoid the parents or the grief. Refrain from talking about the child who died or referring to the child by name.

Impose your views or feelings on the parents or set limits for them about what is right or appropriate behavior.

Wait for the parents to ask for help or tell you what they need.

Tell them you know just how they feel.

Be afraid to let the parents cry or to cry with them.

Only Petina and seal left and then shipping...

2010-10-06T23:18:00.000-05:00

Today was a full day. I met with Hannah's school about her bench and it's placement. These people are so wonderful. I could never have asked for a better group of education professionals for my girl. She was loved and that is so evident to me. A decision was made about placement. I was able to put shipment and all that goes with it in their hands and Hannah's teacher will plan the unveiling or some kind of ceremony. I think it will be perfect and I'm grateful.

When I got home I had updated pictures of the bench. Basically it is finished. Linda (the artist) only has to Petina and seal it. She is taking it to the shippers on Tuesday. When I ordered the bench she told me it would be mid October and I can't believe it is already nearly mid October. I'm very happy with the bench. Happy is actually and understatement. I'm thrilled with it. I think it's a perfect representation of Hannah's life and her loves. I can't say enough about Linda. She sought my input every step of the way and worked hard to make this bench a perfect representation of our girl. Incredible work. I can't wait to see it in person!

Please continue to pray for us. We miss Hannah so much and it really hasn't gotten easier. God gives us the grace we need to make it through the day and we're thankful. Thank you for your continued support and prayers. Here are the photos I received today. I hope some of you will be able to join us when we remember our precious Hannah! Love to all!

Updated Memorial bench photos

2010-10-01T12:37:00.000-05:00

Hannah's Memorial bench

2010-09-25T11:07:00.000-05:00

This is a picture of Hannah's memorial bench as it is being created. We are so excited about this project. Linda Solsby is a fabulous artist and she is wonderful to work with. She is working hard to make this bench to memorialize Hannah in every way. I can't wait to see the final product. I know it'll be grand.

8 months

2010-09-20T17:44:00.000-05:00

Hannah was gone 8 months on Friday. It's so hard to believe it's been 8 months since I held that precious little girl in my arms and kissed her beautiful forehead. I miss her so much. I miss having her under my feet as I cook dinner and having to sing her songs over and over. I miss her announcing it's time to fix supper and saying over and over, "it's hot, very hot, yes it is!". I miss her giving my dishes bubble baths and the water all over the place. I'd give anything to sing and dance to the Dino Dance, "First you hop hop hop all over the place, shake your dino tail and make a funny face, everybody is twisting and turning, have a lot of fun while learning, to do the Dino Dance"...or..."You deserve the glory and the honor, lord we lift our hands to heaven as we magnify your name, you deserve the glory and the honor, lord we lift our hands to heaven as we magnify your name, for you are great, you do miracles so great, there is no one else like you, there is no one else like you, for you are great, you do miracles so great, there is no one else like you, there is no one else like you". Those are just a couple of our kitchen time songs. My girl sure did love to sing. She loved music. Got that from her daddy. Our girl is very missed in case you didn't know it. :)

I had a doctors appointment in Richardson today so I decided to go on the cemetary. I was alone and really needed to go. As soon as I turned down the road to the cemetary I started crying. I got out of the car, cleaned up the graves, fixed the flowers, and then sat down on the ground and had a talk with my girl. Cemetary's have always creeped me out somewhat. That's changed since Hannah's passing. Today it just felt good. I know she isn't there but it's where her body rests. It's hard to explain. All I know is that I left glad that I came.

The artist is working on Hannah's memorial bench for her school. It is going to be amazingly beautiful. She does them in mosaics. Hannah's will have a school house, ABC's, flowers, a golden retriever, musical notes, her photograph, and memorial plaque. Linda sends me progress as she does it and it's just going to be so perfect. I'm excited and can't wait to see it.

We recently did a promo for the counseling center that we go to here in Arlington. I'll try to post it here so you can all see it. It was about Hannah's life and how the counseling center helped. We were so glad that we were able to do a little something in return for all that has been done for us.

Please keep praying for us. We're making it but it's because people pray for us we know. We miss Hannah so much every single day. Our hearts are always heavy with her loss. God's been so good to us in the midst of our pain and we are grateful. Thanks for all your prayers and support. Thanks for loving our girl. Thanks for loving us.

Thanksgiving

2010-08-16T09:39:00.002-05:00

Hannah will have been gone 7 months tomorrow. I miss her more than I can ever express. I'm really starting not to believe people when they say it gets easier. It hurts just as much today as it did the day I had to let her go. We would not make it through this without God and the people he has placed in our life. I can't imagine going through this without Christ.

I've been dwelling a lot on my loss lately. It's a huge loss, you know. Easy to dwell on it. I feel Hannah's absense every waking minute of everyday. Hannah was just the kind of person that connected to everything good inside of you. I miss that connection. I just miss her.

This morning during my devotional time I was praying and crying.(I'm a bucket of tears now a days) Towards the end of my prayer time for some reason I just started thinking about how I had Hannah for 8 years. God gave me 8 years, nearly 9, with my girl. I wasn't even supposed to have her a few hours. The very fact that she lived 8 years to experience and influence the world around her was a miracle. My Noo(nickname prounouced Nu) was beautiful. I got to be the momma of the strongest girl I will ever know. A girl that loved life in the midst of great pain and against all odds. A girl that changed the way everyone who knew her thought about and experienced life. A girl that showed me that if you celebrate small accomplishments your life is alot more joyful because you have a lot of small accomplishments and only a few Big ones. There aren't enough words to tell you all that Hannah's life meant to me.

So, today I'm thankful. I will forever be grateful for the years I had as Hannah's momma and look forward to the day when I see her again. BTW, it's becoming less and less puzzling to me why "I'll Fly Away" was her favorite song. It's incredible the more and more I think about it. I wonder if she was singing it as the angels carried her home.

God Bless!

I'll Fly Away

Some glad morning when this life is over,
I'll fly away.
To a home on God's celestial shore,
I'll fly away.

I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye,
I'll fly away.

When the shadows of this life have flown,
I'll fly away.
Like a bird thrown, driven by the storm,
I'll fly away.

I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye,
I'll fly away.

Just a few more weary days and then,
I'll fly away.
To a land where joy shall never end,
I'll fly away.

I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye

School Time...

2010-08-10T12:37:00.004-05:00

These are photos from one of the times we took Hannah to Franklin where she would go to PPCD(Public preschool for children with developmental delays). We wanted her to be used to the playground equipment. LOL! Great memories!

Man, this is a tough one. I'd say it is almost as tough as her Birthday. This was OUR time. This was the time Hannah and I enjoyed so much. I LOVED that she loved school. It was always an exciting time even if a little scary. I miss going to hannaandersson.com and ordering her a couple cute outfits. I miss taking her shoes shopping. I miss the meetings with staff to prepare them for her and her for them. I miss the countdown we did. I miss the tears as I leave her on that first day and her huge grin as she gets to do the thing she loved the most. I miss the thought I had every single day as I walked out that door and left her, the realization that it could very possibly be the last time I see that smile and I hate that it is my reality. It's just tough!

I love school, I love school supplies, I love books, I love backpacks, I love learning and I got to live all I love through my Hannah. I got to share the joy of it with her. This was something we shared. Something that bonded us. I miss her.

I wouldn't ask her to come back but sometimes in my pain I just want to go up to heaven and snatch her back and tell God he can't have her. That she's mine. I know I'd get up there and not take her because there is no way I'd want to after I saw what she sees and feel what she feels. I just miss her. In church Sunday the pastor talked about John's vision of heaven found in Revelations and the revealing of the glorified Christ. I couldn't help but feel so in awe of the fact that my Hannah is there witnessing all of that. She's now part of the splendor of heaven. In my opinion a big part of it. ;)

I have a new passage of scripture that is my favorite now. I'm continually in awe of how our struggles in this life are not new struggles and when we need a word, if we look, or have a friend that looks, LOL, we will find something that speaks strength to our hearts. I've lived this passage over and over and over the past nearly 7 mths. I've wailed at God crying out with questions like; "What is wrong with me? Why are you doing this to me? What did I do wrong? Did I not take good enough care of her? Why do you hate me?" only to move to remembering what a miracle Hannah's life was from the beginning and how good God was to us. I wish we could have had Hannah with us longer. I miss that beautiful face and sweet voice. It was her time though. God called her home...."time to end your suffering Hannah". I do believe angels walk among us. I think I gave birth to one. ;) I lived in the presence of an angel for almost 9 years. What an incredible blessing! I hope this passage I'm posting will bless you in some way. I know I'm not the only one that misses our girl! God bless! Happy New School Year!

Psalm 77
For the director of music. For Jeduthun. Of Asaph. A psalm.

1 I cried out to God for help;
I cried out to God to hear me.
2 When I was in distress, I sought the Lord;
at night I stretched out untiring hands
and my soul refused to be comforted.

3 I remembered you, O God, and I groaned;
I mused, and my spirit grew faint.
Selah

4 You kept my eyes from closing;
I was too troubled to speak.

5 I thought about the former days,
the years of long ago;

6 I remembered my songs in the night.
My heart mused and my spirit inquired:

7 "Will the Lord reject forever?
Will he never show his favor again?

8 Has his unfailing love vanished forever?
Has his promise failed for all time?

9 Has God forgotten to be merciful?
Has he in anger withheld his compassion?"
Selah

10 Then I thought, "To this I will appeal:
the years of the right hand of the Most High."

11 I will remember the deeds of the LORD;
yes, I will remember your miracles of long ago.

12 I will meditate on all your works
and consider all your mighty deeds.

13 Your ways, O God, are holy.
What god is so great as our God?

14 You are the God who performs miracles;
you display your power among the peoples.

15 With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph.
Selah

16 The waters saw you, O God,
the waters saw you and writhed;
the very depths were convulsed.

17 The clouds poured down water,
the skies resounded with thunder;
your arrows flashed back and forth.

18 Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.

19 Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.

20 You led your people like a flock
by the hand of Moses and Aaron.

Good Grief!

2010-07-23T08:28:00.002-05:00

I've been in a pretty hard place the last couple of weeks. Have you ever wanted something so bad and you knew there was no possible way to have it? It's not a good feeling. Think of that in terms of one of your children. Think about wanting to hear their voice or see them and KNOW that you can't ever do that. You can't plan a visit, or pick up a phone, or just go. EVER. I'm aware I will one day when I join Hannah in Heaven, but sometimes, a lot of times, right now, that isn't helpful.

I really am a person that avoids anger at all costs. I do not like people being mad. I don't like being mad. I don't like the way being angry feels. I also do not like to cry. Crying is neccessary I'm aware and I do it, but I do not like it. I've done a lot of crying in the past 6 months. More than I ever thought I could.

A couple of weeks ago I developed terrible back and neck pain. It was bad enough that I was seriously considering going to the doctor and those of you that know me, know that had to be pretty bad. There was no obvious reasons for the pain. I did not strain it. I had driven a lot but I do that all the time. Never had pain from it. It just popped up with no rhyme or reason.

I always try to be strong even when I'm not expected to or have to. I've decided that is a flaw. Nothing noble in it. Yesterday afternoon I sat on my bed, got out my phone and watched all the 30 second videos I have of Hannah on it. You can hear me way more than you can hear her but her sweet voice can be heard and it brought some of the precious moments just she and I had together back so vividly. I began sobbing and talking to God not so nicely. I asked, "what is wrong with me? Why did you do this to me? What did I do wrong? What am I not learning? Didn't I take good enough care of her? Didn't I love her enough?". Those were just a few of many. Honestly I know God called Hannah home because it was time to end her physical suffering. My mother's heart though just aches. Unless you have experienced this kind of loss you can't phathom it. I'm convinced there is no greater loss. Of course I know God loves me and all that. However sometimes none of it makes sense and I get mad. That's just the way it is for me.

After about 30 minutes of sobbing and talking to God I got up and began doing things. I had been in the dumps so bad that I had neglected a lot of stuff. I noticed I seemed lighter. Not happier but not so dark and gloomy. It wasn't long until I noticed that my back pain and neck pain were gone. A little soreness but no pain. I've heard and read so much about stress and what it does to the body. I never pay attention to it. My doctors harp on me about stress relief EVERY time I see them. "You have got to manage your stress load, Marcey". Your life depends on it. Seriously I get told that every month. I'm usually rolling my eyes and saying, "yeah right!" I even recently had a pschologist teach me relaxation techniques. I was skeptical but they really do work. Do I use them? Rarely. I have no excuses.

I always say I'm going to "try" to do something. In my "Vein of Gold" group yesterday our group leader asked us to show her how you "try" to do something. None of us could. The fact of the matter is you either can or you can't. You either do or you don't. Give it a shot. Go "try" to shake someones hand. See what happens. Fact of the matter is we choose whether we do or don't and "trying" can be a copout. That's the case for me. It's a word of safety. No one can fault you for "trying".

So today instead of saying, "despite my grief I'll try to take better care of myself and manage my stress level" or saying, I'll "try" to allow myself to express the grief I feel at losing Hannah instead of bottling it up until I physically hurt", I'm saying, "I will take better care of myself and do things to manage my stress and I will allow myself to feel and express the grief I have over the death of my Hannah". I'm choosing not to use that word of safety and just do.

Hannah, I want you to be proud of momma, but I'm going to let go of the notion that I have to handle your death in the "right" way, that I have to be strong and say and do the "right" thing for that to happen. I will make you proud but it's not going to be without my feeling and expressing the deep sorrow I feel at not having you physically with me. I know it's an expectation I put on myself. Not one you'd ever impose. I love you so deeply and miss you every breathing second of my day sweet beautiful girl! Thanks for being such a wonderful child and teaching me so much about life and living it. Love you always!

6 months

2010-07-19T10:10:00.000-05:00

I miss you Hannah. I just miss you.

My heart goes on...

2010-07-06T14:04:00.004-05:00

I couldn't sleep last night. I'm missing my girl a lot. I felt a melt down coming on and thought the shower was the best place to have it. No one can hear me over the water. After my shower I came to bed and pulled up Hannah's blog and went back to the beginning. I read through the entire thing. God, I'm so glad I kept this thing. So many things I had forgotten but my memory was refreshed as I read through. I feel like my inspiration for writing died with her. I love writing but I loved writing about her. What can I possibly write about her now. It all seems so sad and leaves me flailing around for what I should do next. I don't want to let the world forget her. Not many people ask how I'm doing anymore and so many are afraid to say Hannah's name. I long for people to talk about her, to remember her. I think even my boys and David are afraid to talk about her for fear of upsetting me or making me feel worse. The only thing wrong with me is that I miss my girl. I think I'm handling her death pretty well. I get up everyday and I take showers, clean my house, get out and among people. I'm making it. I'm trying to live without her. I try to think about how happy she must be in heaven with the nanna that she loved so much, the beautiful music, and her Jesus(he was always HER Jesus). "My Jesus", she'd say. I Loved it. There are no more seizures there. No more doctors appt's and hospital stays. No more needles and procedures. I tell God everyday to tell her that her mommy loved her so much. That it's o.k. that she left me. I'll be o.k. And I am o.k. I believe in God's love for me and know that He took her because it was time. He decided "no more pain little Hannah" and took her home. I'm ready now like never before to join her some day. When it's my time. Until then, I put one foot in front of the other and love her from a distance. She's in my heart always.

Just doing the next thing

2010-06-24T22:50:00.004-05:00

Apology beforehand of the rambling state of this post. Sometimes I just have to type and let it be whether it's good, makes sense or not.

It feels really awful not writing here on a regular basis. Just further evidence that Hannah is no longer with us. She's been gone 5 months now. We still miss her terribly. Not a day goes by that I do not shed some tears at the thought of not having her with me. I just miss her beyond belief. She was the light in our lives. A light that is irreplaceable. We'll never experience that light again in this lifetime. It's incredibly sad and immensely painful.

I don't know how other parents who have lost children feel but I know that everything feels strange for me. I've never been an angry person and for the last month I've really been dealing with some anger. I cannot even begin to describe what it is like to watch your family, friends, neighbors, and the world go on with life as it was before when your life has been so painfully altered. It's just the strangest feeling. I certainly don't blame everyone for going on with life, and I realize I have to somehow go on too, however, just the fact that I have to do it without Hannah is infuriating sometimes. I'd have to say that right now it's infuriating a lot of the time. My heart LONGS for her beautiful face and the sound of her voice. There are times when I'd sell my soul if I could have one more day with her. The whole experience is just indescibable. It's merciless almost.

Don't worry about my soul(I would never sell it!) ;) I talk to God and listen to Him regularly. I KNOW God is at work in all of this. My faith is intact. I can tell you this...God does not take the pain away. He does not ease it. He does help me tolerate it. I'm sure that really messed with some of your theology but it's the truth. I will never get over losing Hannah. It will never not hurt. I will however by the grace of God learn to live with it, and my hope is that I can learn to live well despite the constant pain in my heart.

I believe I will have a great life. I'll have an enjoyable life. I'll strive to use my experiences with Hannah and her loss to help other people. I know God has a plan and I'm trying to really let life happen. Whatever that might be. I did a one day workshop about a year ago. Billie had just passed away and I really thought that what I had learned that day applied to life without her. I had no idea I'd be living a life without Hannah nearly a year later. One of the phrases used in this workshop was "just do the next thing". I am a pro at attempting to figure out life. You'd think by now I'd learn that things just don't happen the way I think they are supposed to. My plans never pan out. I do know that when I "just do the next thing" life is so much more pleasant. It's flowing and freeing. I've been doing a lot more of "just doing the next thing" lately and it's working for me. I cannot live beyond the day right now. Actually I can't live beyond the moment. I love to read scripture in several bibles when I do my Bible study time. Matthew 6:34in The Message translation reads, "34 Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." He does help me. He's there every time I call. He doesn't rescue me from my pain but he sure makes it bearable. Thank you Lord for your constant care and please give my angel a big kiss on the forehead for me tonight!

God bless all and please keep us in your prayers.

Saying Goodbye to Hannah's home

2010-06-08T09:34:00.004-05:00

So, we're in our Arlington home pretty much and we're loving it. We are really enjoying the house even though it is full of boxes and nothing is in place. The move was exhausting and hard but it's done and I'm thanking God for all He has provided.

Hannah lived in three homes with us in Hillsboro. The last one was the longest. 5 years. The night before we started moving I cried and decided we weren't going to move. I was serious too. It was late at night, everyone was in bed, and I was going to announce to David that next morning I had changed my mind. Regardless of being out lots of money, etc. I wasn't leaving my girl. I then went and sat in the floor of Hannah's room with all it's boxes and empty shelves and prayed and cried. It's sad to say but I pray more now than I ever did before. Don't get me wrong, I prayed regularly before, however my prayers have changed and I honestly feel like I have a friend I can go to when no one else can help me or hear me. It's an amazing feeling. As I sat there talking to my friend I felt a peace and calm descend on me. I've felt that so many times in the past nearly 5 months. God spoke quietness to my anxious heart. He reminded me that Hannah wasn't in that house anymore. Her stuff was there but she was being well cared for in a place where she feels no pain. She is free from all her earthly limitations. She is surrounded by family and friends that have gone before her and they are enjoying her immensely. When it's my time I'll see her again. I came in crying and asking for help because I didn't think I could make it and left feeling encouraged and peaceful about it all. I do not know how people survive the loss of a child without a faith to sustain them. It's got to be horrible.

So, we packed everything up that was left to pack and we started our move. Moves are insanity anyway but this one was beyond that. We have way too much stuff. The move was hard but went well I think. I cried a few times when I found something of Hannah's hidden in and under things. When everything was gone I did a final walk through and I was surprised at what I felt. I had prepared myself for feeling another great loss. I didn't feel that at all. I hated the house we were in. I was thankful for it but didn't like it. I thought I'd feel like I was abandoning Hannah. Nope, didn't feel that. I realized once again that she isn't here. What I moved was her things and things that I will cherish but they aren't her. What I did was do something for me, for our family, in making this move. We were all affected by the constant reminding of our great loss. Hannah was known and loved deeply by everyone that knew her. That was most of Hillsboro. Everyday in that house day in and day out without her was a constant reminder of the fact that I had lost her. I couldn't cook, do dishes, go shopping, go to church, or anything without feeling my loss. That loss is so painful that I can't feel it constantly. I won't survive it if I do. I will never forget my girl and I will never stop missing her, but we needed this change to learn to live life without her. It's the hardest part of losing something as precious as your child. Learning how to Continue living life without them.

Hannah loved living. I don't know how she did it. She'd be in the hospital and they'd be doing things that I know were painful and uncomfortable. Sometimes she'd cry a little and sometimes she wouldn't cry at all. She always smiled though. Even when she was ticked and aggrevated, she smiled. She was just incredible that way. She loved life. It's the one constant comfort I have. My Hannah was a happy girl.

So far moving has been a good thing. I have had back and neck pain for years, and severe headaches constantly. It was all tension related. I felt like I had to be on alert all the time. That Hannah's life depended on me being available to her should she need me. Even since Hannah's passing that "alertness" has not left me. I still walk around ready for a seizure to strike. I really didn't know that changing houses would help that but it has. I have felt some tension release and it feels pretty good. Not blaming Hannah for my tension. Like I said, I'd gladly do it all again if given the chance. I won't be given that chance though so I'm happy that my body can get some relief.

We're going to miss our Hillsboro friends so much. Wish we could have moved them all with us. Other than that though we are LOVING being here so far. This house was an answer to a long time prayer and we are so thankful for it!

Please keep us in your prayers. We thank you!

Happy Birthday Hannah

2010-06-01T14:34:00.007-05:00

Happy Birthday to you, Happy Birthday to you, Happy Birthday DEAR Hannah, Happy Birthday to you!

I love my Hannah, She loves me too, I love my Hannah, in everything we do! (((Big hugs and lots of kisses)))

I thought I knew heartache but no heartache compares to the one I feel not having you with me today. You would have been 9. We would have had so much fun and you would of had us laughing because you'd be singing happy birthday to Zachary even though it was your birthday. I'd try fruitlessly to get you to sing Happy birthday Hannah and we'd all finally just let you sing what you wanted and enjoy our quirky corny girl.

None of that was to be this year. I tried to celebrate. Thought it would be the "right" thing to do. I'm glad we did what we did but to say it helped would be dishonest. As I stood there looking at your grave all decked out in spongebob nothing made sense and it all seemed so unfair. You were so good and brave. You fought hard and I fought right with you. It's so hard for me not to feel like I let you down. Like I didn't research enough, or get you to the right doctors quick enough, or did I miss something the night you had the seizure and could I have intervened more quickly. I just feel so defeated sometimes. I miss you so much. I struggle to find meaning in life anymore. I find it but it's a struggle.

I was excited for you. You came alive this year and you were doing so well. You had friends, you were learning, you were interacting and communicating. I had so much fun with you. Things were turning around for us after a rough couple years it seemed, and in the midst of all the celebration and renewed hope we were feeling, you left us. I didn't see that coming. None of us did. Our lives were altered forever.

One thing I do know without a doubt...you were loved deeply. You were loved by people I did not even know. When I think about how much you were loved, I do feel there is one thing I did right, and that was to share you. I'm so glad I let the world know you. You did more for people than your mom ever shall Hannah. You fought with a dignity and strength beyond your years. I'm so very proud to have been your mommy. You were the best little girl a mom could have ever wanted. I hope you knew how much I loved and admired you.

I hope your birthday is celebrated in heaven. I hope they have spongebob there and that all the friends you've made were able to come celebrate with you. I know y'all probably celebrate often. I imagine heaven is one grand celebration. Still I hope this day was extra special and that you got to see the balloons we sent your way. Happy Birthday sweetheart. You are missed beyond words. All my love, Mommy

Pictures from the day in no particular order.

Hannah's Last Award

2010-05-26T19:03:00.003-05:00

This has been a really emotional and hard week. It's the end of the school year and that means so many lasts for me. We packed Hannah's room on Saturday for the move. I've spent the week saying good bye to teachers and school faculty. Friday Kyle graduates from High School. We get the keys to our new house Saturday, and Sunday would have been Hannah's 9th Bday. If I get through this week it will only be by the grace of God.

Yesterday was the end of the year awards ceremony for Hannah's school. They asked if I could receive Hannah's award. It is something I wanted to do so I did. When they asked me I said yes, and then cried for an hour afterwards. The day got here and I was glad to have two of Hannah's classsmates to help distract me. It was our turn to recieve awards. Hannah's teacher said a few words and then began calling each of the boys to receive their rewards. When it came time for Hannah's, she was choked up. She loved my girl so much. I blew Hannah a kiss, received her medal, hugged her teacher and cried, and then stood with Hannah's classmates as the parents, teachers, and administrative staff gave her a standing ovation. I did good. I cried some but not too much. Then we went out for photos and I held it together pretty durn good I think. When I drove into my driveway and parked my van however I bawled. That was the last award my girl would ever receive. This was the last school year I'd ever prepare her for starting a new year. No more summers of she and I having school together. So many final moments and it was tough.

Last night Rachael and her girls dropped by with a framed picture of the Central Baptist GA's(helped Hannah get Koolio), Hannah, and Koolio. It has paw prints on it and signatures of the girls. It is a precious gift that I will cherish always.

I'm thanking God in the midst of all my heartache for so many things. I'm thanking him for strength and courage. I'm thanking him for the quickenings he gave me and pushes to require a little extra out of myself. I'm so very thankful for all the time I invested in Hannah's life. It was not an easy life, but it was a blessed one. I'd gladly do it all over again. I learned so much from Hannah. I will never take another day, another hour, or moment for granted. Life is too precious.

Here are a couple photos of the day. I look awful but I don't care. It was an incredible day for me. Hannah was remembered and those days are very special in my eyes.

Packing Hannah

2010-05-23T13:20:00.003-05:00

This has been a very emotional week for me. On Wednesday I had dinner with Hannah's teachers. On Thursday I visited Hannah's school. I did really well until I left. As I walked down the ramp, along the sidewalk, through the building, to the office, out the office, and into my van, my heart broke. Hannah loved that place. I got to see her guy pals, Alexis, Israel, and Charley Boy(as Hannah called him). When Koolio and I walked in the room Charley and Israel ran to Koolio. They were excited. Alexis ran and was messing with paper. I was a little surprised by that because Alexis always enjoyed Koolio so much. Later however he came to pet Koolio and we noticed that he had made a puppet of Koolio. It had floppy ears and everything. I just love that boy. I had a pin with Hannah's picture on my jacket and Israel made me cry when he rubbed it with his hand and wanted it. It was really tough to do but I'm glad I went. Hannah's teachers are the most awesome humans on this planet and she was very fortunate to have them. I will forever be grateful for the love and care they gave my Hannah.

Yesterday my friend Mary came to be with me as I packed Hannah's things. That was a hard thing to do. After we finished I just climbed in her bed and cried. I decided that if I even thought it might have some significance I was keeping it. I'll go through it more later when I can. We also created a box of things I wanted to keep close and easily accessible. The last blanket she lay on, her favorite books, pillow, etc. So, it's done and I'm glad it's done but it was oh so sad. I was completely and totally mentally exhausted and a numbness set in similar to what I felt right after her funeral. Still I felt the prayers of my friends and had a friend with me that helped me keep it all in perspective. I'm thankful.

All these good byes are really tough. I pray none of you ever have to experience the loss of your child. There is no worse heartache. The only thing that gets us through it is the prayer and support of friends. Thank you!

4 mths

2010-05-17T09:46:00.002-05:00

Today marks four months since Hannah passed away. I started feeling a cloud around me yeserday and it is continuing today. There is no way to get around this loss. Sometimes I think you just have to allow yourself a meltdown. Your mind won't let you do anything else anyway. Then after the meltdown you start putting one foot in front of the other again until the next one. So between meltdowns you make some progress down the road however it is slow, excruciating, and takes a tremendous will to go on.

I don't like life without Hannah. I'm trying to because she loved life, and I know that if I can love it, I'd be honoring hers. Still it is very difficult. Something happened to us that is irreplacable when she left this world. We fed off her love for everything around her. She inspired us, entertained us, and just plain gave life meaning. We're all kind of floundering around trying to find it on our own and being very unsuccessful.

The next few weeks will be an emotional rollercoaster. Kyle will graduate from high school on the 28th of this month. I'm so proud of him. He's done well to have dealt with all the obstacles the last few years have held. He's wanting to go to college and he's doing all he can to get there. He's an impressive young man and I think he'll make an impact in this world in ways that are much needed. So, I'll be saying goodbye to his childhood and watch as he embraces adulthood. It's both a sad and exciting time.

On the 29th we will get the keys to our new house and can begin the process of relocating. I'm excited about the house.(VERY excited) I'm excited about having David work closer to home. I'm excited about living in the big city.(a little nervous too) I'm excited about the opportunites we'll have. However, I'm sad to leave the only home Hannah ever knew, the community and friends that we love so much, and teachers and school staff that loved my girl almost as much as I did. It breaks my heart when I think about leaving but I also know that I have to do it. I cannot tell you how hard it is to walk by Hannah's room everyday. Not only does it hold the memory of Hannah but also Billie. Our home feels like a shrine. Everything is just as she left it. I thought that was going to be good but I'm finding it's not. I need to get out of this house where every single thing I do reminds me of my loss. I don't want to ever forget but I do need to be able to live outside of it. If it's at all possible to do that. I know a lot of people do not understand and I wish I was able to explain in a way that they could. I just can't. We love this place but we need change. So, we'll sadly say goodbye and hold God's hand in the next phase of our life. If you're upset with our decision then I pray you see it for what it is. We weren't out to hurt anyone with it. We are just doing what we have to do to keep going.

The 30th would have been Hannah's 9th birthday. Guess it explains a little why I'm having such a hard time lately. Her 8th birthday was wonderful. We were so excited she was well enough for the party. The tears are flowing right now as I think about not having her here this year. We're going to plan a picnic at her grave site and have chicken nuggets, fries, shakes, and cupcakes. All her favorites. Last year I was buying stuff to decorate her room like a classroom for her birthday. She LOVED it. This year all I can do is buy flowers to put in the ground. I can't buy her any pretty clothes or shoes. It's incredibly painful. People just have no idea.

I guess this turned into a pity party posting. I don't want it to be but it is what it is. I'm just sad. I'm not hopeless. I'm broken. I'm not forsaken. God is my refuge and strength! In HIM I have placed my trust. I'm thankful above all because I am not alone in my grief. Never alone....

Mother's Day

2010-05-10T16:23:00.005-05:00

Yes, it was a tough one but I made it. I woke up to cards from the men in my life and the tears started. I miss my girl. I've always known she'd never be back but there comes a time in the grief process where it sets in and it's really hard. I have felt heartache like I can not even describe. Life has been forever altered for me and I have to find my way in this new world. It's really tough stuff. I said that already didn't I? Every step I take to move on, my heart wants to pull me back. But it wants something that is no longer there. Somehow Hannah has to remain part of my life but in my new world. It's a journey that keeps me on my knees and in God's word for sure. So, yeah Mother's Day was terribly difficult, but still good. I had breakfast with my men and hung out with them all day. They don't mind my tears. They just hug me and let me know they miss Hannah too. I'm blessed to have two wonderful boys, a fabulous husband, and my Koolio.

Last week was a busy one. We've been needing to move for some time. We could not make up our minds about whether to move closer to David's job or not. I've been looking everywhere and praying hard. Everything I looked at was either way over our budget or the neighborhood was less than desirable. On Sunday I saw a house online in Arlington. I loved it from the pictures but you never know if the pictures will do it justice. I made arrangements to look at it Tuesday, fell in love with it the minute I saw it, filled out an ap, and met the owner on Saturday to discuss terms and show the house to David. So, we will be relocating in a few weeks to Arlington. The house and neighborhood are for us. David and I are in awe of how it is everything we've ever wanted. We are excited and ready for the next chapter of our lives in this home we already love.

That all being said leaving Hillsboro will be very hard. It's the only home Hannah ever knew. It's been a place that has supported our family through very difficult times and has rallied behind us in everything we've endeavored to do. We have friends here. Very dear friends who mean the world to us. The teachers and support staff that loved my girl almost as much as I do are here. Leaving will not be easy and the decision was one we agonized over. It's just time.

David's job is more demanding and time consuming, gasoline is nearing $3 a gallon, Kyle will be at Huntsville in college, our current home is in need of a lot of work, Zach wants to get into radio stuff, and I will go back to school eventually. We all feel like we need change. Everywhere we go and everywhere we look someone or something reminds us of our loss. Not that we'll ever forget it but we just can't live in it all the time. I'm hoping people will understand.

Here are pictures of the house...

My Ideal Day

2010-05-07T08:28:00.002-05:00

I've been meeting weekly with a wonderful group of women who are truly inspirational. The group will end in three short weeks and I'm sad to see it be over. I do feel tremendously blessed to have had this opportunity at a time when life made very little sense to me. It still doesn't make a lot of sense but I have a heightened awareness of exactly where my hope lies. It's ALL in God's hands and He has promised that EVERYTHING will work for my good if I love him. That is what I told Him in that little shower stall at Cook Children's hospital in Fort Worth the night before Hannah died. I told Him that I wanted her with me but that if he needed her I would let her go and I would still love Him. I still love my Hannah, I still love my God, and because I do there is hope.

One of our tasks this week for the group was to imagine an ideal day and to write it. I thought it would be difficult to do but I did it in just a few minutes. I'm sharing it here only because I think it would be a great exercise for anyone to do and would encourage you all to give it a try. Just let it flow and see what happens. Also, because so much of my "ideal day" was about Hannah's life I thought it would be appropriate to share. Remember we were allowed to imagine the day and there were no limits. I have a very active imagination. :)

Marcey’s Ideal Day

Koolio is at my feet as I awaken to this glorious day. I have a few minutes before my alarm goes off so I snuggle in close to my honey and enjoy the protected feel of being in his arms. My alarm rings letting me know it’s time to get up and going. I grab a cup of coffee, my journal, and Koolio and we head out to the deck. As I am entertained by Koolio’s antics with our backyard wildlife, I journal about life and memories of my Hannah. I pull myself from my writings to get busy with the day at hand. Today I have a board meeting and we’ll award grants to families of children with epilepsy and autism as well as special needs teachers for much needed aids. Among those aids will be cooling vests, seizure sleep monitors, wireless video baby monitors, service dog supplies, adaptive equipment, and other misc. needs. Before that meeting I have a session with the neurological staff at a Children’s hospital to train them how to communicate best with the families of their patients. Besides the training I will ask for input on what parents can do to help their child’s neurological team treat them successfully. Eating lunch alone is not happening today. I get to meet a dear friend who inspires me every time we meet. Our lunch is no disappointment and I’m ready for my afternoon. I’m meeting with a new family. I always enjoy those first meetings and the relief I see on the faces of mothers when they realize I can offer them resources and direction. The best part of my day is getting to meet their fabulous kiddos and spending some time with them. After a full day I return home to spend the evening with my family. When everyone is winding down I go to my home office, climb on the window seat with my laptop and do some researching or writing while peeking at the star filled sky. As I retire for the night I think about how fortunate I am to be living this life. Hannah’s life continues to inspire people; I get to use my love for learning, teaching, and my first hand experience with special needs. I’m in awe of how God orchestrated it all and remember, Romans 8:28 and we know that God causes all things to work together for good to those who love Him, to those who are called according to His purpose.

In Memory

2010-05-05T10:25:00.007-05:00

I joined the Idea-League when we learned about Dravet syndrome and began the journey to see if Hannah had it. She did. The Idea-Leauge puts out a newsletter and in the April issue they do a "In memory" feature on Hannah. Please read the newsletter and get involved in helping these families. It's an incredible organization and they are working on hard to help kids like our Hannah. Enjoy!

Cut and Paste this link in your browser to see the newsletter

www.idea-league.org/userfiles/files/Channeling_In_5_2.pdf

We Remember

2010-04-29T06:28:00.003-05:00

On Sunday our family went to a ceremony held at Cook Children's honoring children who had died the past year. I honestly wasn't sure I'd ever walk the halls of that hospital again but we did and it was o.k. Uncle Joe, Aunt Shirley, Tricia(Hannah's teacher), and two wonderful friends; Charlotte and Lea came to be with us. I am so glad we went. It feels so good when someone remembers our girl. The ceremony was beautiful and I was so amazed at how much this meant to the hospital staff. There was a responsive reading that gave me chills. It was a Jewish one. After each sentence we were to respond "we remember". However the PICU staff was scattered throughout the building and they would stand and say loudly "we remember". There were songs, poems, and the chaplain talked about remembering. Toward the end there was a candle lighting where they read the child's name and lit a candle. Before the candle lighting there was a slide show. It had pictures of the children lost, poems, quotes, etc. When Hannah's came up we all cried but oh how thankful I felt. Over half the pictures on the slideshow were babies. Thank you God for letting me have my girl nearly 9 whole years! The ceremony concluded with everyone in the prayer garden and butterflies being released. It really was an incredible day. Hard but oh so incredible!

Yesterday I was doing some cleaning and I found an old hair tie that had a significant amount of Hannah's hair in it. There was a time while she was on keppra that she lost quite a bit of hair. I felt the hair and was overcome with grief. I loved that beautiful hair. It was a pain to comb through some days but it was gorgeous. As I put it to my face I could smell her. That's what was so painful. Her clothes have long lost the scent of her but that hair hadn't. I shared the hair tie with David last night and he enjoyed the scent of her too. We both thank God for anything that lets us feel her.

People remind me often that Hannah is now healed and whole. There are no seizures in heaven. There is no autism in heaven. Thre is comfort in knowing we will see her again someday. However when I imagine Hannah she is seizureless but still that quirky beautiful girl with autism. I think I just have a different perspective on it now that she is gone. Don't throw stones yet. LOL! I still believe we need to find out what is causing autism and do anything we can to stop it from happening to our kids. I'm just a mom who lost a little girl who had autism and is thanking her lucky stars for all that having her taught me. Before having Hannah my world was so small and self centered. I always looked at big things and ignored the small. My life is richer, fuller, larger, and certainly others centered. I also celebrate everything. No longer is something seeemingly small insignificant. I feel blessed even in great loss.

We still miss our girl and always will! We'll never forget. Thanks for all the love and support!

Program from We Remember Ceremony

Candle Lighting

Name tags

Releasing butterflies

All those in attendance to remember Hannah.

Dear Hannah

2010-04-23T08:01:00.003-05:00

Morning Hannah! It's mommy. Oh sweetie, mommy misses you so much. There's not a moment that goes by that I do not wish I could see your beautiful face and hear your amazingly sweet voice. I know heaven's really enjoying having you around. Do you wake everyone up singing, "wake up little blue bird!" Man, do I miss my mornings with you. I miss you saying, "holdy me" and the warmth and love of that hold. I miss you saying, "thank you Lord for another safe night" as we'd start getting ready for school. I miss our night time routine too. Oh God how I miss those kisses and night time prayers! I just miss you. I miss every little detail of your amazing being.

Your crazy daddy and I are going to try to celebrate being married 20 years this weekend. I know he misses you too. It's a bittersweet occassion for us. Just being able to go makes it more evident you're gone. We'd both gladly trade our weekend if it meant we could have you with us. I'm so glad you had a daddy who loved you so much. The weekend will be fun of course. How can it not be with your daddy making me laugh the entire time, I'm sure. He's still crazy Hannah. You loved him that way and so do I! Oh, Did you know that Koolio does us just like you used to. If daddy hugs me or gets to close he wedges himself between us. It's so cute. We think of you every time he does it and talk about how he must have learned that from you.

Speaking of Koolio, he's lost weight since you've been gone! You fed him way too good girl. He needed to lose a few pounds. He misses you. Sometimes he lays in your room on the floor or in the hallway outside of your room and just looks in. Mommy is trying to keep him busy but no one can keep him as busy as you did! Precious has taken up to sleeping in your bed. I think she misses your shuffling feet behind her all through the house. We didn't realize how attached she was to you. Even the animals are having to adjust to your absense from our lives.

Kyle and Zach are doing o.k. They miss their pesty sister a lot. Kyle is going to college in Huntsville. You sure wouldn't have liked that! You loved having your bubbas close. We're proud of him though and pray like crazy for it all to work out.

Mommy has been so lost without you. I'm trusting in God's plan and knowing that evenutally it'll be o.k. I'll always miss you but my hope is that I'll be able to use what I have learned from your life to inspire hope and help. Four words seem to be the theme of all my thoughts lately. Live, Love, Laugh, and Educate. I think those words describe you. You lived life every minute of every day and you loved it. You definately loved and did it far better than most of us. You laughed. We still laugh at things you did and said. You were hilarious. You educated us all. You inspired education just with your love for it. So as always, mommy is praying for God to order her steps. I remember when you copied me and prayed that. It was so cute. Was there nothing you didn't notice or absorb!?!?

I miss you beautiful girl! More than I can ever express. I can't wait to see you again. I'm going to kiss you until your screaming for me to stop! :) What a day that will be! Until then though, mommy is going to do what she can here to help your life continue to inspire others! I love you sweet girl! ALWAYS! Love, Mommy

PS: By now I'm sure you've met your Uncle Dewayne and you're being spoiled rotten. Make him sing "I'll Fly Away" with you. You'll love his voice!

20 years

2010-04-22T16:02:00.002-05:00

David and I are going to celebrate 20 yrs of marriage this weekend. It's bittersweet of course. Just being able to go away makes the fact that Hannah isn't with us very apparent. We will end the weekend by attending a "We Remember" ceremony at Cook Children's hospital where Hannah will be honored. I'm looking forward to spending time with my honey but I'm a little apprehensive about the emotions I'm feeling concerning Hannah not being with us. As I made my packing list this morning I wanted to scream. The hole in my heart is just so big and painful. I'm so glad that God has a plan whatever it may be and that I can trust Him it will all be o.k. He's been faithful and I'm thanking Him for all the love and life he continues to bring my way. Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Here's one of my favorite photos of my girl!

More cemetary photos

2010-04-22T15:56:00.002-05:00

The marker

2010-04-16T23:09:00.000-05:00

Connections article about Hannah

2010-04-08T08:00:00.003-05:00

I think my ability to write died with my girl. Not that I was ever any good at it anyway but my inspiration was her. Life without her is hard. I miss her every minute of every day and long to have her here.

It helps to know that people haven't forgotten her and that they still find inspiration in knowing her. Our community school newsletter/paper featured her in an article. It was really sweet. Has a picture of her teachers and classmates in front of a picture of Hannah. It said she didn't speak though and that's inccorect. She did, she just didn't carry on typical conversations. Still the article is beautiful and I'm so excited that they honored her in this way.

Little Girl's Love for Life Brought Joy to All

Every once in a while you meet a person who truly changes your life. Hannah Chapman was one of those people.

Hillsboro ISD lost a very special daughter, granddaughter, student and friend on Jan. 17, 2010 when Hannah Gabrielle Chapman breathed her last breath at the tender age of eight years old. She was diagnosed with epilepsy and autism, among other medical conditions.

Hannah loved life and people. She was an encouragment to everyone she met- even though she couldn't speak - because her enthusiasm for life was infectious. She was loved dearly by the teachers, who said she was like a little teacher herself, keeping her fellow classmates in line with the classroom routine.

Among her favorite things in this world were school, music, church and her service dog, Koolio. Her favorite song was "I'll Fly Away" and her favorite food was a toss up between pizza and chicken.

We'll miss you, Hannah. Our lives are richer because of you.

I'm so glad I shared my girl with the world! Please continue to pray for us. We need it!

Purple Day Friday...

2010-03-24T20:47:00.002-05:00

These were t-shirts my sister had made for our family. Don't forget to wear purple in memory of Hannah and to raise awareness for Epilepsy.

SUDEP (Sudden Unexpected Death in epilepsy) is estimated to account for 34% of all sudden deaths in children. Wear purple Friday March 26th and remember Hannah. Let's help all the children like Hannah out there and bring awareness to epilepsy.

PPCD

2010-03-22T13:02:00.003-05:00

Last week was a long one. I was ready for it to be over. The boys had Spring break so things were even more out of routine. I had way too much time on my hands no matter how much I tried to stay busy. On Friday the boys, Leeann(Kyle's gf), and I made a trip to the cemetary. I took Easter flowers and a lawn rabbit for Hannah's grave. I think I did o.k. It's hard. The grave is still relatively fresh so it's ugly. The ugliness of it really bothers me. I know that sounds strange but it's the way I feel. I'm thinking about ways to change that.

This morning was my first day in PPCD at Franklin. I really enjoyed it. The kids are awesome. All boys. Hannah would have LOVED it. Nothing has felt "right" since she passed away. Today felt right. I look forward to next time.

Thank you for your prayers and support! They mean the world to us!

Two months tomorrow

2010-03-16T19:15:00.005-05:00

Tomorrow will mark the two month passing of Hannah. I'm typing this today because I don't believe I will be able to tomorrow. I've often complained that the days fly in life but man they sure do slow in death. It feels like she has been gone for years. My body literally aches to feel her against me. It's definately getting harder I think.

I find myself really struggling. As long as I do Hannah unrelated things or things that I feel honor Hannah's memory I am o.k. It's the everyday things I struggle with. I have yet to purchase groceries. Who would have thought something as normal as buying groceries would involve grieving. I did not realize how much I shopped for Hannah and Hannah related stuff. Right now I go in the store and grab a thing or two and it becomes too much so I have to go. What I do purchase is frozen stuff that I can just throw in the oven or microwave. I can't bring myself to put together a meal. Dinner time was special for me because Hannah was there under foot saying, "it's hot, very hot, yes it is" or "it's time to eat eat". In between mixing or putting ingredients together I'd have to sing and dance "First you hop hop hop all over the place, shake your dino tail and make a funny face, everybody is twisting and turning, we have a lot of fun while we're learning to do the dino dance!" I'm so very thankful that although it was annoying and a little difficult to do at times I did it anyway. Then, today I had to leave Cracker Barrel because there was way too many Easter related things around. Little clutch purses, hair accessories, and toys everywhere. If Easter is this hard I don't want to even imagine Christmas.

It is hard. It's excruciating sometimes. The thing I'm most thankful for right now is that my faith went through a transformation the last couple years. Without that transformation I would not be able to get through this. There are nights when I just cry out for help because the pain is too much to bare and I've always felt strength come. I'm constantly reminded that someone much bigger than I am is at work in my life and He loves me. One of these days I really need to take the time to tell all the things that transpired even months before Hannah's passing. I didn't understand them then but I do now. I'm thankful.

I want to say thank you to everyone that was involved in Hannah's life in any way. You made it a good one. She loved all of you and so do I. Please keep us in your prayers. We have Easter and the very next month would have been her 9th birthday. What an incredible celebration we would have had! God Bless!

Metabolic genetecist testing results.

2010-03-15T23:01:00.007-05:00

On Saturday I got a sweet letter from the metabolic geneticist outlining the tests they did in the hospital before Hannah passed away and the results. Everything came back normal. I really wasn't surprised. I think we mostly just had them done to rule out syndromes that are common in kids who have seizures.

This is what I believe Hannah had (just needed a little more time to get to Chicago. I got wrapped up in the "hows" of getting her there etc. and just thought we had time. :( Her epi here wanted to rule out everything else before considering Dravet.)

Dravet syndrome

INTRODUCTION

Dravet (Dra-vay) syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a neurodevelopmental disorder beginning in infancy and characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though the incidence may be found to be greater as the syndrome becomes better recognized and new genetic evidence is discovered. It is thought to occur with similar frequency in both genders and knows no geographic or ethnic boundaries.

The course of Dravet syndrome is highly variable from person to person. Seizures begin during the first year of life and development is normal prior to their onset. In most cases, the first seizures occur with fever and are generalized tonic-clonic (grand mal) or unilateral (one-sided) convulsions. These seizures are often prolonged and may lead to status epilepticus, a medical emergency. In time, seizures increase in frequency and begin to occur without fever. Additional seizure types appear, most often these are myoclonic, atypical absence, and complex-partial seizures.

During the second to fourth year of life, varying degrees of developmental delay typically become apparent and can include regression of aquired skills.

Additional features that are seen in significant numbers of patients with Dravet syndrome may include sensory integration disorders and other autism spectrum characteristics, orthopedic or movement disorders, frequent or chronic upper respiratory and ear infections, sleep disturbance, dysautonomia, and problems with growth and nutrition.

GENETICS

The sodium channel gene SCN1A is currently the most clinically relevant gene found to cause epilepsy and is a known contributor to a significant percentage (approximately 50-80%) of cases of Dravet syndrome. Researchers have documented many different mutations of the SCN1A gene, however the majority of them do not result in Dravet syndrome. SCN1A mutations most often lead to milder forms of epilepsy, including Generalized Epilepsy with Febrile Seizures (GEFS), Generalized Epilepsy with Febrile Seizures Plus (GEFS+), Intractable Childhood Epilepsy with Generalized Tonic-Clonic Seizures (ICEGTC), and Severe Myoclonic Epilepsy, Borderline (SMEB). Dravet syndrome is generally considered to be the severe end of a broad spectrum of SCN1A-related epilepsies.

GEFS -------------- GEFS+ ----------- ICEGTC ------------ SMEB -------------- SMEI/Dravet syndrome
Mutations of the SCN1A gene have an autosomal dominant inheritance pattern, meaning that they can be passed from parent to child. However, in Dravet syndrome, although at least one-fourth of the affected individuals have some history of febrile seizures or epilepsy in their extended family, the gene mutation nearly always arises “de novo”, or new to the individual, meaning that neither parent tests positive for the gene mutation and it is thought to have occurred spontaneously after conception. Modifying genes and environmental factors likely play an important role in determining the severity of the resulting condition. Other genes have also recently been implicated in Dravet syndrome, including SCN9A and PCDH19. Much remains to be understood about the causes of Dravet syndrome and research is ongoing. Although Hannah tested normal for SCN1A and PCDH19 I have friends who have had their children retested and the mutation was found the second time. Also you can be clinical for Dravet without the gene mutation.

TREATMENT

At this time, the treatments available for Dravet syndrome are focused on improving symptoms, primarily anticonvulsant medications to control seizures. Response to these medicines is variable, but often seizures persist despite treatment. While certain medications have been found to be generally useful for individuals with Dravet syndrome, others have been quite consistently found to have an aggravating effect. The helpfulness of other anticonvulsant therapies, such as the Ketogenic Diet and vagus nerve stimulation (VNS), are in ongoing evaluation. Once again, results tend to be highly variable from person to person.

Early implementation of global therapies is essential to support optimal development. Patients with Dravet syndrome should receive physical, occupational, speech, and social/play therapies and an enriched environment is encouraged. Treatments to address orthopedic, sleep, autonomic, immune and growth problems may be important considerations.

OUTCOMES

Outcomes, once again, tend to be variable. For many individuals, the progression of Dravet syndrome begins to stabilize after the age of four. Partial and myoclonic seizures may attenuate, and in some cases disappear. Convulsive seizures, though their frequency and intensity may moderate, usually persist, often occurring during sleep. Fever continues to provoke seizures and can still lead to status epilepticus. Communication, motor, and cognitive function stabilize, but significant delays remain to varying degrees. Despite being at increased risk for accidents, infection, status epilepticus, and Sudden Unexplained Death in Epilepsy (SUDEP), an individual with Dravet syndrome has an 85% chance of surviving into adulthood. Because this disorder is rare and has relatively recently been identified as a distinct syndrome, little is known about long-term prognosis and life expectancy.

http://www.idea-league.org/dravet-syndrome You can read more extensively and follow links at this site.

I posted this information for any other moms who may be following Hannah's story and they need this information. I only learned about Dravet a couple years ago and I learned about it from parents who had kids with it. I wish I had been more "pushy". Not that it would have changed the outcome but for my own peace of mind. Please support the Idea League and what they are doing to help these kiddos. Through them I have learned of many other children like Hannah who have left their families way too soon. It's a devastating experience and one that hopefully some day is preventable.

Koolio Chapman

2010-03-10T17:12:00.003-06:00

One year ago today we met our Kool man. What a first year he's had with the Chapman family. I thank God everyday that he's in our lives and I thank God he was in the last over 10 months of Hannah's life. It was a fuller and more fulfilling one because she had her "Koo Yoo".(that's what she called him at first) Thank you 4paws for making it possible for Hannah to have such a devoted friend to the end. Our family is forever thankful for you. Thank you to all of Hannah's angels who helped us be able to make Koolio possible for her. Thank you HISD and HES for your willingness to work with us and make accomadations to include him in Hannah's school day. I just don't think I can thank all of you enough for making him a possiblity for our family. Sincerely, I thank you.

After Spring Break I'm going to go to Hannah's old school and help in the PPCD classroom when I can. I'm really excited and think that being around the kiddos and being in the environment Hannah so loved will do me a world of good. I'm hopeful that I can include the school she attended when she passed as well but am starting out at the old school first. I was so fortunate in that Hannah's teachers were more than her teachers, they became my friends. So, that's what's happening for now. I will certainly share any new developments with y'all when they come up. Thank you again for all your support and prayers. I need them.

Blogs & stuff

2010-03-07T23:14:00.003-06:00

I will be blogging about things unrelated to Hannah on www.chapmanliving.blogspot.com I'm feeling the need to go back to blogging on the chapmanliving site I created back in 2005. It's more of a general family blog. So those of you who are following, you may want to check chapmanliving out. I am planning to keep up Hannah's blog to some extent. I know there are things that will be Hannah related happening.

If y'all would please help me pray about something I'd appreciate it. I was contacted about an amazing opportunity to share Hannah's impact on my life. The program is called Chris Fabry live and it's an incredible radio program. I do not have any information on it and it's not a for sure thing. Mr. Fabry just contacted me and asked me to think/pray about it and he'd keep in touch. I'm asking God to order my steps and want anything I say or do to honor Hannah and glorify Him.

I miss my girl everyday. I miss her so much sometimes it's hard to breath. My friend's grandson; Javan, asked me yesterday if I still missed Hannah. I told him, "yes, I do". He said, "I do too." I couldn't help but remember the last time she saw him. He put her in his wagon and he pulled her all over the yard. She LOVED it and I think he enjoyed it too.Today I was cleaning and I found a hair tie that had quite a bit of her hair on it. I just rubbed my fingers across that hair over and over and longed to kiss that sweet head. I found pictures of her that we haven't put in an album yet and it made me long for that wonderful giggle and beautiful smile. I don't believe I'll ever stop longing for her. Still even though I miss her I find myself so very proud of her for the life she lived despite the odds. I look back at those NICU pictures and remember she only had a 50/50 chance of survival and she made it nearly 9 years. I can't help but thank God for giving me 9 years with my Hannah. I will forever be grateful for the time we had. Forever.

My friend Vicki had this bracelet made for me. It's a memorial bracelet. The picture doesn't do it justice but the bracelet is so perfect. It has Hannah's name and her birth date, etc. I'll attach a picture.

Thanks so much for everything. Especially all the prayers and support. We need them so much.

God Bless!

Depressing

2010-02-20T20:40:00.005-06:00

It feels like whenever I open my mouth or start to type anything it comes out depressing. I do not like being the depressing person. I don't think anyone in my position could ever be constantly upbeat but I strive to be as positive as I can despite the circumstances, and to find the good in everything that happens. Let me tell you these circumstances stink to high holy heaven though! I am sorry that I am this person now but I don't think it's going to change. Actually I'm not sorry because the person I am now loved her girl so much that her passing has affected her to the core. I don't think any mom that loved their child could lose them and be the same. My hope is that some of you love me or like me enough to let that be o.k.

I do feel dog piled and there isn't a lot of positive stuff going on in my life right now. Honestly everything kind of stinks all the way around. My boys, David and my faith that God has a plan are all that get me up each day.

Hannah's loss has turned my world upside down. I need to stay busy so I am going to attempt to participate in a weekly group(similar to ones I've done in past) and will take a break from blogging for a bit. I promise if anything eventful happens I will post it here. I will continue Hannah's blog in some form and will share that with all of you when I do it. Thank you to all of you who continue to support and pray for us. It means a lot to me.

1 yr today

2010-02-19T18:02:00.002-06:00

Billie; David's mom, my wonderful mother in law, and nanna to my kids, passed away one year ago today. I don't think it does get easier. Everyone says that but it hasn't for us. We will always love and miss you Billie!

One Month...

2010-02-16T23:13:00.002-06:00

In a few hours the date will mark the one month passing of my girl. Man, do I miss her! Sometimes the loss is felt so deep I can barely breathe. I'd give anything to kiss that beautiful forehead again.

Hannah struggled medically her entire life but she was such a fighter it was hard to imagine her doing anything but beating the odds always. Although I began to suspect a couple days before she passed it was still hard to believe she wasn't going to pull through this one. Did you know that the first time she was seen by a neuro he looked me in the eye and told me "you can't die from a seizure". However I knew otherwise because of research and reading about parents who had lost their precious children to seizures. Yes, you can live everyday with seizures and you can have a good life despite them. But...yes, you can also die from seizures and more children are all the time.

People ask me if I'm angry at God? I do get angry but not at God. I'm angry at seizures. I hate them. I want to defeat them. I don't want another mother to lose her baby to one. I want the world to know they are vicious, mean, and they change the life of a person who has them and the lives of all that love them. The medications are ruthless and they leave our precious chidren worn out, cognitively hindered, confused, and afraid. Seizures are a monster. They terrorize. There is not enough research going on and that needs to change.

So, no, I'm not angry at God. You have to understand that my faith has been in a transformation stage the last couple years. God is my best friend. There are so many small details to Hannah's passing that only God could have orchastrated and they each just let me know He was there with me. No, I do not like that my girl is gone. I hurt beyond belief. I do not understand and I do question why. However, when things are unbearable and it's hard to even breathe I know He's with me and He is there with comfort. Whether it's just a rush of strength or someone to lean on. He's been my provider and I have to believe always will be.

My Hannah was precious beyond belief. She absolutely loved life. She had autism but we were so fortunate in that she loved people. She loved living. Hannah was a good natured quirky little girl. We laughed constantly around her. She had such a joy to her that you couldn't help yourself. I think that's the hardest thing for us right now. We all fed off her love for life and without her we're stuck trying to find that joy ourselves. It's quite the feat but we're trying.

Life with autism is hard. I don't want it to sound like it's a walk in the park. It's not. Our world is rough. It's intolerant of differences, and in all it's flexibility, it's not flexible at all. It's sometimes pretty durn cruel. I remember taking Hannah to vacation Bible school one year and she was flapping during a game and one little boy looked at her and said, "you're really wierd". His tone of voice scared Hannah. She didn't understand that he didn't like her, however I did and I can tell you my mother's heart was broken. I also overheard another mother in church tell her daughter that Hannah "was not all there" one time. It took everything in me to refrain from telling her SHE was the one not all there! I think our world just needs a huge dose of compassion.

(Speaking of compassion Hannah's name meant, "compassionate bearer of mercy and devoted to God". I picked the name Hannah because it is one of my favorite Bible stories and I never in a million years thought the Hannah in the Bible and I would have something somewhat in common someday. Totally off subject but just thought about it and that's kind of cool. Just a little side note. LOL!)

I can also tell you that despite the cruelness in the world there are still people who care. People who reach outside of their own world and touch the world of others. Others in need. I feel forever blessed that Hannah opened up my world and I got to experience and got to know some of the most amazing humans on the planet. Other special needs kids and parents, teachers, doctors, nurses, therapists, and strangers(some who became dear friends). It was evident to us at Hannah's passing that she was loved by a lot of people and that meant the world to us.

I don't know what the months or even days ahead have in store for me. I know everyday will be etched in sadness. Some days worse than other. I can tell you the one thing I feel more than anything.....Hannah Gabrielle Chapman was a gift from God straight to her momma. She will be missed beyond measure and my heart will always be heavy with the loss of her. The hole in my heart can never be filled but my girl loved life and I will somehow find a way to continue to love and live that life for her when I can't do it for myself.

Please continue to pray for us and we love all of you! Thank you so much for your continued prayer and support!

thank yous

2010-02-16T13:50:00.000-06:00

I'm glad my girl was so loved but I'm going to forget to thank somone. :( There is just no way to stay organized during a time like this. SIGH!

We're making it...by the grace of God

2010-02-16T08:09:00.000-06:00

Our precious girl will be gone a month tomorrow. Friday will be a year since Billie left us. The heartache is indescribeble and inconsolable. Only through the strength and Grace of God can we keep going. Our trust is in Him. “The LORD is good, A stronghold in the day of trouble; And He KNOWS those who trust in Him.” (Nahum 1:7 NKJV)

Happy Birthday Koolio

2010-02-10T14:27:00.002-06:00

Today is Koolio's birthday. He is 2 today. Wish his girl was here to celebrate with him. She'd love singing Happy Birthday and giving him extra treats. We'd have planned a grand celebration the two of us! Happy birthday Kool man! Momma loves ya and am so thankful for all you did for your girl!

Sadness....

2010-02-08T09:12:00.004-06:00

Nothing worth reading really to write. Losing my girl and not having her beautiful, amazing smile greet me everyday is pure torment. I know and believe God always has a purpose for the things he does and I believe with all my heart that he took her home because it was time. Still I don't like it and it really stinks for us. That girl breathed life into a room when she walked in it. There's a lot of life gone from mine now and the sad thing is that it's not a temporary absence. It is forever gone.

I have not gone through any of her things. I can't and I won't until I feel like I can. That's one thing I refuse to let anyone pressure me to do. Of course I think going 2 wks after her passing and purchasing a stone is quite the feat. I wasn't ready but did it anyway. A good friend of mine is going to make me a memory quilt out of some of Hannah's clothes that I choose. I think that will make going through them easier. The things she loved the most I can put in a box and she can use in the quilt. I'm also looking into someone making a memorial bracelet. I have been wearing Hannah's hair tie on my finger. Don't ask me why. It just makes me feel like I am not forgetting her.

We spent Saturday after some appt's for David with our friends in Plano. It was a nice get away. The guys really enjoyed it. I wasn't very good company but tried. Kyle really enjoyed going to the Lincoln dinner with Ann and Karen Sat. night. He had his picture taken with Congressmen Johnson and Hall. It was a great experience for him and we're so thankful he had. David, Zach and I had a great time hanging out with Dyann while Kyle was off at the dinner. Sunday we had breakfast at Poor Richards(awesome place), the guys went to church in Plano(I did not feel up to going), and we finished the day off with a Superbowl party in the neighborhood of our friends.

Last week was a horrible week for me. I think some of the adrenaline is wearing off and the reality is setting in. It's not a pretty reality and I would give anything not to have it be my reality. But I can't so now it's off to try to figure out how to have this huge hole in the center of my life. The hole is so big that there is not a lot of me left. That little bit of me just doesn't know what to do. It's so unbelievably lost and sad.

I know this wasn't a pleasant read. I can't apologize for it though. You have to know where I'm at so you can pray for me to get through this. I also know this isn't all about me but David and the boys aren't blogging; I am. It may seem like I'm thinking only of my grief when I write. Believe me...I am not. We're all grieving and miss her so much. My posting probably sounds a little hopeless even, but I am never without hope. I know God's hand has been in it all and His ways are perfect. I am thankful beyond measure for the wholeness our Hannah is experiencing. No more sickness, seizures, or frustrations because the words were stuck in her head and she couldn't get them out. The next time I see my girl we can sit down and have a conversation about anything she wants to talk about. She will be clearly understood and I will rejoice in it. Hopeless is the last thing I feel. Indescribable sadness, that IS what I feel.

Love you all!

Love this song...

2010-02-04T12:17:00.002-06:00

Not anything really to do with Hannah's story but love this song. David heard it and told me about it yesterday.

www.youtube.com/watch?v=jfdwbuIv8bI

mornings and evenings

2010-02-04T06:54:00.004-06:00

I can hear the boys readying for school. The mornings and evenings are the hardest for me. Really I think it is all hard. I still can't drive through a McDonalds and wonder if I ever will. However the mornings is when I'd wake her up and we'd be so silly as she was excited about going to school. In the evenings it was all about getting ready for the next day. Oh, how I'd give anything to play a game of "matching" or "do colors" again. My girl was precious beyond description.

My heart constantly breaks. I'd be lying if I told you it was not a fight to continue to take part in life around me. It is a fight. I'm fortunate in that I have a wonderful husband who although is grieving so intensely himself, he's not letting me do mine alone and I not letting him do his alone. We will do this together. We've done so much together in the 20 years we've been married but this is by far the hardest thing we've ever done. Hannah was a beautiful girl and she was ours.

The boys are doing as good as they can be, I think. I know that this has and will impact their lives forever. My prayer is that they will take what they learned from Hannah and always honor her in their actions to others. I have two great guys who I am super proud of. They loved their sister with all their heart and they sacrificed a lot due to the challenges she had that impacted our family. They did it however without a complaint. I know she was loved deeply by her brothers.

I had dinner with a couple of Hannah's teachers yesterday. It was so good to see these ladies. I hope to get with the others soon. I wish all kids with special needs could experience these ladies. I'm thankful beyond measure Hannah had such wonderful teachers who loved her so.

While you are praying for us could you please say a prayer for the many families who have children suffering from seizures. Pray for strength, clarity of mind, peace, and healing. There are more of us than you probably know and we're sleep deprived, scared, and hurting. Our babies have a disorder that no one really truly understands. Doctors visits are filled with trying new meds or adjusting current meds. Meds that have horrible and vicious side effects. Most of these kids have been on numerous medications with little to no results and those moms are just holding their breath hoping and praying that the next seizure stops and that they never have the BIG one that takes the life of their precious child. There are many blessings to these kiddos so take the time to get to know one. The pain however that these parents and children go though is one that no one should have to experience. They are making progress in the scientific/medical field with seizues but it's SLOW. Too slow. Just please pray for these mommy's and if you know of one or meet one please let them know they aren't alone.

I thank you for your continued prayers as we will forever miss our Hannah. I am keeping ths blog up. Some things have been laid on my heart to do and I'm not sure how or when I will do them but we'll just keep waiting on God and just doing the next thing.

Love to you all!

Hannah's stone

2010-02-02T16:51:00.002-06:00

I made a quick trip to Denison to order a stone for Hannah's grave. Luckily I was able to pick up my friend Annie in Plano and she made the trip with me. I think I picked out a perfect stone for our girl; an heart with an angel for an angel who will forever have our heart. It was another one of those hard things I have to do but I did it. Not sure how but I did. On the way back we stopped in Allen and an enjoyable lunch with Bab.

How are we doing? How are we really doing? We're all breathing. Sometimes it's as basic as that. Not being dramatic or anything it's just the way it is. It feels like there is this huge hole smack in the middle of our lives. All of us are coping the best way we can. We are loving each other through this and so thankful for the prayers going up on our behalf.

I'm a pretty open book good or bad most of the time. I do question things sometimes. I sit in Hannah's room and hug her things close and cry my eyes out and wonder why. As my friend reminded me today God can handle my questions. Aren't we glad of that!?!?!

I should get busy. I love you all and thank you for your continued prayers and support!

Thank You!

2010-02-01T15:01:00.001-06:00

Greetings,

We want to thank each and every one of you for your kindness, support and genuine care during the loss of our Hannah. We have been overwhelmed with the outpouring that came our way. Thank you for the beautiful flowers & plants, money to help with expenses, personal gifts, and donations to her memorials. We sincerely thank you.

There are not words to describe the loss we feel. We will always miss our girl. Always! We’re thankful for the nearly 9 years we had with Hannah. She was an amazing little girl who left smiles everywhere she went. Hannah met every challenge that came her way with a spirit of life. She loved living and she made everyone around her love living too. That’s what our family holds onto. We will love life and honor her memory while we do it.

Many have asked about Koolio. Koolio will remain with our family. He’s grieving the loss of his girl right along with us. He misses his girl a lot. We’re so thankful to have him and thank all of you for helping us get him for Hannah. He was truly a devoted companion who cared for his girl tirelessly. My hope is to eventually use him in some epilepsy, autism, & service dog awareness education. I think it would be a perfect new job for him.

We are in the process of writing thank you notes now. I am worried that we are going to miss someone so if you could forward this general thank you to everyone you know that loved our girl we’d appreciate it, and please if you do not get a personal note, know that it is not intentional. I’ve done my best to keep it all straight. There are just a lot of people who loved our Hannah and love us. I had no idea. We love all of you and sincerely thank you. Please continue to keep us in your prayers.

God Bless,

The Chapman’s
David, Marcey, Kyle, Zach & Koolio
www.hannahstory.blogspot.com

I had a dream...

2010-01-30T09:36:00.002-06:00

Last night I had a dream. In the dream I was standing in a room with no roof, and the sky was brilliant. The room was full of the most vibrant and beautiful colors I'd ever seen. Despite being in a strange place it felt so perfectly right. There was a curtain and I cracked it. I saw the back of a child with long beautiful hair. She had on shorty PJ's.(Hannah's loved shorty pj's) She was turned toward a wall filled with letters, numbers, colors, shapes, calendars, & a number of things. My heart was beating almost out of my chest. There were about 20 or more other children sittiing criss cross on the floor. The little girl turned around and it was Hannah. She looked so amazingly happy. I couldn't get to her and it was frustrating. Finally I just stopped trying and watched as she took the pointer and began her calendar time. She pointed to things and asked a child what it was and they'd respond and she'd tell them "you got it going on girlfriend!" She reached up to the shape oval and paused a minute, ran her fingers perfectly around it and felt it.(Hannah had severe hypotonia in her fingers and hands and never could trace anything without assistance) One of the kids said, "what is it Ms. Hannah?" She turned and looked at him and said with true appreciation, "that my friend is an oval." They contnued circle time and another of the children said, "how old are you Ms. Hannah". Her reply was with a sheepish grin..."66.....nooooooo, I am 8 yrs old but almost 9!" For those who know Hannah she would always say she was 66 and then correct herself. It was another one of those awnry things she did. It also took her half a year to learn and understand that she had grown a year older. Thihs is where my dream ended...She looked up and right at me, gave me and wink and turned around and said...."story time". In her hand was the book..."The Farmer didn't wake up."(I buried that book with her because it was her favorite) I never got to her or talked to her. I was an observer. It felt o.k. though. Like I'd be back.

I'm not sure what to think about dreams. Right now I don't care. I'm just thankful for this one. It's helpful to see my girl happy and whole. It's unbelievably hard not having her with me. The last two days have been gut wrenching. I miss Hannah so much. We all do. Including Koolio. He still looks for her. Our lives have been forever changed. I'm thankful for every moment we had with her and I wish we'd had so many more. I've been really talking with God the last couple days about helping us through this and I know He is and will.

We really appreciate your continued prayers and support. I don't know what we'd do without it. Our family did start counseling last week to help get through this together. The last thing we want is for one of us to need the other and we be so wrapped up in our own grief that someone gets left behind. Pray for wisdom, strength and courage for us all. Love y'all so much!

Trying to keep going...

2010-01-25T15:01:00.003-06:00

Well, we're back in real life now. What does that look like? It looks strange, wierd, and quite empty. I do not even know where to begin from here. A huge part of me wants to lay down, cover up my head, and never get up again. It's all the prayers that are going up for us that keeps us going. I just know it. Prayers have always sustained us and kept us through all of Hannah's obstacles and challenges.

I'd be a liar if I wrote that I do not struggle. I miss my girl unbelievably. She was a part of every inch of my life everyday. Every decision I made, everything I did, everywhere I went, all was wrapped around Hannah. I feel so completely and utterly lost. You just have to understand...she was my life for the past nearly 9 years.

I've wondered did I do enough? Is there something I could have done? Did I miss something? Could I have intervened sooner than I did? Why did I let the epi cancel the testing that was scheduled for Jan. 4th? Could I have fought harder for them to get to the bottom of what was going on? Would any of that have kept her with me longer? The second guessing will drive me insane so I have to stop. All I know is that I loved her and I tried to do everything I could to help her.

Saturday when her lungs quit working I went to take a shower to just get away. I knew things were not looking good. I leaned down in the corner of the dressing area and told God that I wanted her to stay with me. That I wanted my girl with me, but that if he needed her or it was time for her to go I would still love Him. I just wanted Him to know that my desire was for her to remain with me. He chose to take her and I keep my promise. I still love Him.

When we made our decision to take her off life support we called everyone that wanted to say bye to her and let them. Most of her teachers, some family and friends were all able to tell her bye including her little PAL(high school mentor). I would have it no other way and am so glad we made the decision to allow that. Hannah LOVED every one of those people and I'm so glad they got to tell her they loved her and good bye. Then David, myself, the boys and Koolio made the decision to go ahead and remove the life support and she was in all our arms with Koolio licking her feet as she took her final breath. It was so peaceful and not at all like I might have expected or imagined. She passed within minutes. We held her for a while and I sang, "I love my Hannah...she loves me too...I love my Hannah...in everything we do". It was absolutely the most painful thing my heart has ever experienced and I pray I never have to do it again. I can't even describe the pain I feel at her loss. There is a peace but it still hurts mercilessly.

Her funeral was perfect. Hannah touched so many lives and only Hannah could have brought together so many different people and make them a family. She was just such an amazing little lady. I'm so thankful for all the people who came to pay their respects. It was an incredible tribute to our angels life. One I'll never forget.

At the grave site when we were finishing up David made an request and the boys and I ran to his side thinking he was going to really fall apart. He then asked if everyone could sing the Barney song because he thought Hannah would like that....the entire group of people sang in unison..."I love you...you love me...we're a happy family...with a great big hug and a kiss from me to you...won't you say you love me too". It was absolutely the most perfect thing in the world for the moment. I'm so glad Hannah had such a wonderful daddy who loved her endlessly and tirelessly.

Hannah loved school and her teachers so much. Her teachers were amazing. I can't tell you how much appreciation and love I have for these ladies. They made our girls life as full as it could be and I will forever be grateful for it. I'm so glad I made the decision to set my fears aside and let her experience school.

I have no idea what life holds from here. I do however know that our girl put up quite the fight to live life and I would be doing her a memory a dishonor not to keep fighting and living as well. Please continue to pray for us. I'm not sure how much I'll keep up this blog but if I decide to move on to another blog then I will let you all know so whoever wants to continue to follow can.

Please keep praying for us. We desperately need it and appreciate it.

Prayers

2010-01-23T07:53:00.004-06:00

Just a note to say that we appreciate prayers and ask that you continue them. We've taken a few days to just be together. We still have some heavy days ahead of us and taking a few down days just seemed like the best thing we could do for our family right now. I miss my Hannah beyond description. I have been wearing her hair tie on one of my fingers ever since we were at the hospital and I just can't bring myself to remove it. Her funeral was beautiful and perfect. Just wish she was with us. Love you all!

Hannah's obit

2010-01-19T16:23:00.000-06:00

You can see Hannah's obit here...

http://www.marshallandmarshallfd.com/

Funeral arrangements

2010-01-18T17:52:00.000-06:00

Funeral arrangements for our girl are as follow...Wednesday visitation 6 to 8 at Marshall and Marshall funeral home in Hillsboro. Funeral will be Thursday at 11 at Central Baptist Church in Hillsboro. Interment 4:00 in Tom Bean at Vittitoe cemetary. She will be buried next to her nana.

Our last photo with Hannah

2010-01-17T23:49:00.003-06:00

I've debated sharing this photo. It's such a public forum and such a private moment. However, there has been nothing private about Hannah's life. She's maybe unfortunately had a mother who is an open book and talks too much sometimes. I do feel like because I was open and I did share her she was blessed beyond measure with so many people who loved her.

Hannah passed away in our arms at 5:15 today. Koolio was there but the nurse didn't capture him in the photo. He licked her feet until the end in true Koolio fashion. LOL!

Thank you for being part of our girls life. I know I should be sleeping and I promise I'm going to try but...well, those of you that know me...sleep has never been a part of my vocabulary since the day Hannah was born.

I'll let you know about funeral arrangements when I can. Love you all and thanks for everything!

Our last photo with Hannah...

Hannah is going to see Jesus...

2010-01-17T13:02:00.001-06:00

I want to thank y'all for praying and ask for continued prayers. Our Hannah isn't going to make it. Her brain is no longer functioning. It'll be a while before I post again as I want to spend as much time with our girl as I can. Koolio is here at her side as well as her brothers and me and David. Love y'all!

no change

2010-01-17T08:01:00.001-06:00

No changes in the night. Numbers still going up so dialysis is almost positively happening. Calling in a lung doctor. Stiill not waking up. Hoping it's sedation build up.

Rounds...

2010-01-17T00:07:00.000-06:00

Doctors just made rounds. NO kidney biopsy results yet. They are saying maybe tomorrow. They have stopped all sedation to see if she will wake up. They are inserting a feeding tube and going to give very small feeds. Also going to try a different diuretic to see if it will work. If it fails she will have to do dialysis to get this fluid off of her. It's been melt down day for me but I'm doing o.k. thanks to the love from others that is surrounding us. This stuff ain't easy. Please pray for Kyle. He will come up tomorrow and if things are as they are today it will be hard on him. I will be glad to see him. I miss my boys! Zach has a hard time seeing her this way and we don't force it so he probably won't come. Please pray for them as you're praying for hannah.

I want to thank everyone for all the concern, prayer, company and help with anything we need. This is going to be a long road and it is so great to feel like we aren't in this alone. We love y'all and please, please just keep praying for our angel girl. Also pray for Koolio. He's not allowed in PICU but is on the EMU floor if and when she ever moves there. This is the longest he's been without his girl since we got him. He's doing o.k. at home with the guys but he misses his girl I know. Thanks again for everything!

lung issues

2010-01-16T19:04:00.000-06:00

We still need a miracle. No changes. Now she's having an episode
with her lungs and she's not breathing much on her own. Her pupils
are sluggish. She hasn't moved today. Thinking maybe too much
sedation but just don't know. I had a prayer meeting in the shower
while ago.

The song..."who's report will you believe" just keeps going through my head". I know God is in control and his will is perfect. I continue to put my trust in Him. Continue praying for a miracle please. I'd give anything to hear that voice and see those eyes right now.

Stinks

2010-01-16T12:37:00.000-06:00

Man...Man...Man...This is stinking! Basically Hannah is in renal
failure. It's looking like dialyisis is on the horizon. Still
awaiting results from biopsy. Hopefully by the afternoon. The
ultrasound was good. She's having lung issues from fluid build up.
I just told her that she can stop now.

I've learned all I want to about kidneys and lungs. She hasn't
awaken but she's sedated due to vent. I'm not going to lose hope. I
just won't.

NO change...

2010-01-16T04:32:00.000-06:00

Well, it's 4 a.m. and I'm sitting here watching my Hannah. I can't wait for her eyes to open and her to start throwing around her Hannah words and phrases. This is when it's all put in perspective and you cherish all the moments you've had and pray for so many more. I'd take a melt down even at this point. There hasn't been much change at all. Tests have been done that will tell us something. Her urine is a horrible color and it's almost nonexistent. We don't have much more room to go up on one of the numbers before they decide to do dialysis. She's also close to needing a transfusion. I really am officially terrified. Even in this fearful moment I do feel hope. How could I not with all that God has given the Chapman family lately.

I'm wishing I had brought a bible and some inspirational books. I've been using the online version though. I just keep quoting...Psalms 34:4 I sought the Lord, and he heard me, and delivered me from all my fears.

I'm so thankful for friends. This would be so much harder without you. Please continue to pray for healing of her kidneys. We need them to do their work. Love to all.

biopsy done

2010-01-15T18:25:00.000-06:00

Kidney biopsy done. Still next to no urine output. She is swelling. Things are being batted around such as lupus, or post strep reaction, etc. My head is still swimming. Still on vent and still not awake. She is still fighting when they mess with her. Continued prayers are our number one request. We need God to work. Love y'all!

Not doing well...

2010-01-15T11:47:00.000-06:00

Man, my head is swimming. Doing a kidney biopsy this afternoon. More tests ordered to see if we can get some answers. Neuro came in and after all this is stabilized she will go to the EMU floor so we can do some tests to see if she is surg. candidate, etc. More genetic tests were ordered today.

We will be in here for a while.... :( Please contiinue to pray for our girl. Still hasn't awaken but is fighting when messed with so...Love y'all!

Need a Miracle.

2010-01-15T05:46:00.002-06:00

I am officially scared now if I wasn't before. Hannah's kidneys are not doing what they need to. We have a kidney doctor coming in today to try and see what is going on. Talk of dialysis etc. is going on. She's still on vent but they are going to try to take her off again today. Just please pray. Our girl needs a miracle.

fever down but another issue...

2010-01-15T00:37:00.003-06:00

Sigh...we are in limbo and scared. Hannah's fever is coming down but now we're dealing with the fact that she hasn't urinated since this morning and she is being pumped with IV fluids so she should be flooding the place. They've started her on lacix. Her blood gases are still not coming back as well as they should be so she is not coming off the vent any time soon. We need all the prayer we can get for our girl. Thank you so much.

Not dong good

2010-01-14T06:44:00.001-06:00

Hannah woke up a little and they tried to extubate her. It was unsuccessful and they think she aspirated and has pneaumonia. Still has fever.

Hannah's in hospital

2010-01-13T22:42:00.003-06:00

We were careflighted to cook's this morning. Hannah had another 2 1/2 hour seizure. I will type more asap. Right now she has a very high fever and not responding. Please pray. Thanks.

Hannah's sick...

2010-01-12T23:14:00.003-06:00

Hannah has another URI. This one is pretty bad. She's really struggling tonight and nothing is helping. I had to give klonopin so no school for her tomorrow. :( Prayer for some rest would be greatly appreciated.

Ready for another week...

2010-01-11T12:21:00.005-06:00

Well, the boys enjoyed the Mav's game even though they lost. They said the seats were amazing and the parking wonderful.

Hannah and I hung out and cheered on the Cowboys. In the first quarter when someone didn't make a good play she said, "Stupid Cowboys...Come on!" Later when Austin made the touch down she said, "Go daddy's Cowboys! Touchdown!" They aren't the Dallas Cowboys. They are Daddy's Cowboys. She went to bed around 9 so I had a couple hours all alone befoe the guys got home. At first it was a little depressing but I soon took advantage of a rare occurance and enjoyed some peace and quiet. LOL!

Last week was a little rough getting everyone back into the routine of things and this cold certainly didn't help. Man, I do not like the cold. I can't wait til Spring! Brrrrrrrrrrrr! Hopefully this week will go more smoothly.

Love you all and hope you have a great week!

Hanging out...

2010-01-09T13:55:00.003-06:00

The guys are going to a Mav's game tonight. We got tickets for Christmas and they are very excited about going. They have one extra because I can't go and all their friends are either grounded or had to bow out at the last minute so if any of you want to go, let us know. It's tonight at 7:30 against Utah Jazz.

So, tonight it will be just me and my girl. We'll play and cheer on the Cowboys. Since yesterday's atten-DANCE she wants to sing and dance to "Car Wash" and "Disco Duck". LOL! At least we're getting some exercise. Oh, and she called me a "pinhead" and told me she was going to "have a cow" last night. She also told her teacher yesteday...."alrighty..lets see...what will we learn today?" LOL! This morning she was in the floor looking under my bed and I asked her what she was doing and she said, "I am trying to find it." Then her daddy was working over his blackberry this morning trying to help a client and I told her, "daddy is working". She said, "daddy IS working....shhhhh....listen". I know that all those thing do not sound special for most 8 yr olds but for ours it is amazing progress. She has always been verbal but very echolaic. She still is extremely echolaic but she is gaining more spontaneous coversation lately. We're excited. Small things have become big reasons for celebration in our house. It's the best lesson I've ever learned.

Well, I hope everyone is having a great Saturday. God's blessings and lots of love!

More Atten-DANCE photos

2010-01-08T14:00:00.001-06:00

See previous post...

Atten-DANCE

2010-01-08T13:47:00.003-06:00

Hannah's school has an Atten-DANCE every six weeks for all the kids who have perfect attendance. This was the FIRST time Hannah was able to go. I just knew she'd enjoy it and she did. It had a disco theme and she had such a great time. Ms. Rebecca and her boogied! It was absolutely such a joy to watch. I know the teachers and parents think I'm crazy but so many times while watching her and taking pictures my eyes were filled with tears. She was so fascinated by the disco lights on the wall. LOL! She was trying to catch them. She wasn't the only one though, a lot of the kids were trying to figure the light out. It was a great day!

Kyle's 18th Birthday...

2010-01-08T13:37:00.002-06:00

Kyle turned 18 on the 30th of Dec. We went to Magic Time Machine to celebrate. Hannah had a great time.

I Love this picture. These two are two peas in a pod.

The rest of the pictures are of Kyle and pals at Magic time machine and bowling.

stuff

2010-01-06T08:06:00.005-06:00

Hannah's URI seems to be improving. Mine is kind of stuck but haven't been to the doctor yet. I'm a little worried about Hannah today. She had a melt down and there were no apparent triggers. I wasn't even in the room. I walked in and she was bawling saying something I couldn't understand and then she stopped when I put her jacket on. I hate not knowing what is going on. I'd give ANYTHING if she could tell me. She could be in pain and I wouldn't know it or it could be as simple as her shoes are bothering her. It's the saddest thing about autism, I think; just not knowing but wanting to know so you can help.

Also, we need to find a sitter for Hannah that can sit with her on occassion. Not too often but just every now and then. Please pray that we find the "right" person and that I can allow myself to enjoy a break. I have severe anxiety about leaving her ever.

I'm pretty tired this morning and have tons to do. Thank you all for your support and prayers.

this and that

2010-01-05T08:25:00.002-06:00

Sunday turned out to be a CRAZY kind of day. I was supposed to take Kyle's girlfriend home but Hannah was up all night coughing and I was feeling bad too. Then David was going to take her home and his server crashed so he had to go into work and work all night and all day Monday. So Kyle, Hannah, and I took her home yesterday instead. That drive is to LONG. LOL! Hannah did better than I thought she would on the drive but was VERY ready to be home. Thankfully she had new toys to play with.

Everyone goes back to school today. I already miss the toots. Hannah didn't want to get up at all. She was comfortably cuddled in her Sponge Bob cover.

It appears Hannah got a new principal. I was totally surprised and had no idea. I'll miss Ms. Duncan. She was amazing and so great with the kids. The new principal's name is Mr. King. I met him this morning.

Pray for us as we endeavor to work more on development/quality of life with Hannah. She was potty trained at one time but after severe seizures just lost it all. Lately she's been showing signs of readiness again so we are going to give it a shot. We're so ready for less pull up use. That'll save us around $100+ a month right there.

Her teachers are going to start working more one on one with her in a less distracting area of the room so we can build on skills she possesses but hasn't mastered.

Hope everyone is having a great week!