From the time Asa was a little baby, I've had the same prayer for him as I've rocked him to sleep at night. I've prayed every night that when we get up in the morning, things will be back to normal and this last 3 years will have been a bad dream. This prayer seemed possible when Asa was just a few weeks or months old. You'd think by this point I'd realize that this "bad dream" scenario isn't going to happen! Even as I've let a lot of dreams and hopes go, I've still held onto a few dreams that if I was honest, I really didn't think would happen. Things like Asa being a walker or hearing him say "Moma". And it isn't that I'm depressed at the thought of him not walking or talking because of all the issues that he could have, these are very mild. Sure they are frustrating, tiring and disappointing but not tragic in any way!
But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.
Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!
Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!
God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!
Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!
6 comments:
Oh my gosh...this made me cry and cry. However, by the end I was laughing! I love the "for beginners". Understand that so well.
STILL CRYING!!!! I am just bursting with joy over this wonderful news!! GO ASA GO!!!!! He also looks quite proud of himself, I might add!!! I am just so stinkin' happy!!! This has made my day!!!!! Huge high five Asa!!! And your pronounciation story reminds me of my little Ainslee being just 4 and being able to tell people that her little brother had (before we realized CFTD was a symptom, not a dx) "congenital fiber type disproportion" just clear as a bell!!!! Kids just get it more easily sometimes!!!! Huge hug and so very proud for you all!!!!!!!
Clara-Leigh
what a blessing!
Kim, I thought I sent a comment regarding the post about finding Asa sitting up in bed, but did not see it, so will make a brief comment now.
Keep dreaming and praying with your precious "Mother" love. I continue to spy our great God bringing about joyous surprises! God's timing is always on schedule, just when we need a special glimpse of His compassion and care. I truly believe you are seeing His "work" every day! Blessings. M.Brown
Kim, I thought I sent a comment regarding the post about finding Asa sitting up in bed, but did not see it, so will make a brief comment now.
Keep dreaming and praying with your precious "Mother" love. I continue to spy our great God bringing about joyous surprises! God's timing is always on schedule, just when we need a special glimpse of His compassion and care. I truly believe you are seeing His "work" every day! Blessings. M.Brown
Never give up wishing, hoping, and praying. You never know what will happen.
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