Thats right folks, August is SMA Awareness Month! What does this mean? This means we need to rally together to let the world know about SMA, so that the horrible disease can be cured, kids can be helped, babies can be saved, and long futures can be a possibility.
Seriously people, this disease is so scary and so devastating. Just a yesterday, I was sharply reminded yet again, how fragile and weak SMA has made my little miss Denalli... I know that that she is unable to walk, I understand that she can not bear weight, lift heavy things, take caps off of most markers, wash her own hair, wite with a pencil, dress herself, get out of bed, pour syrup on her pancake, climb up on the couch, swing in a normal swing, cut her food, put her shoes on, go the restroom alone, or run across the room to snuggle up on my lap and give me a hug. Yes, I get it... she is fragile. And yet, every time I see something else that SMA has stolen away, my heart aches, my soul aches, and all I want is for her to STOP GETTING WORSE >>>
Yesterday, I walked into the living room where Denalli was sitting on the floor watching a movie. I had Ryka on my hip, and needed the Wii remote that was laying beside her, so I asked her to hand me. She eagerly grabbed the remote with both hands, then with all her might she struggled and struggled some more to get it into my outstretched hand.
At first I was impatient with her because for a fleeting moment it seamed like she was stalling, but then I quickly realized she was serriously STRUGGLING to lift the remote above her head. For a moment, I just stood there, unable to say anything, with a flood of tears burning behind my eyes. My mind was screaming, "NO, She is strong than that.. it is just a wii remote... ". I then reached down, supported her little hand and helped her lift the remote high in the air. "uhg, thanks mom", she said with a sincere smile, "that was heavy...".
I quickly thanked her then left the room to let the flood of angry tears and frustration go. I really do try not to let her see my heartaches of wanting "normalcy". To her, life is great and a wii remote is "really heavy". After a while, curiosity got to me, so I grabbed the wii remote and went and put it on my baby scale... Do you know how much a wii remote weighs?!? To be exact, our wii remote weighs .36 pounds or 5.76 ounces, or simply put- it weighs less than 1/2 a pound... Because of this genetic disorder and because God has a plan for her life, Miss Denalli- at almost 6 years old- struggles to get 5.76 ounces above her head... And in all reality- and she is considered STRONG in the SMA world!!! The little episode that tears my heart in two, is so minimal compared to many other SMA families. A lot of SMA parents never even get to see their child sitting on the floor by themselves watching a movie....
Wow, perspective is everything isn't it?!?!
So, like I said before- we have to get the word out about SMA. We have to let the world know that this disease is SOOOO close to a cure and that they can help get the cure here faster too. It is incredible what the drug therapy has done for Denalli. I would absolutely hate to see what SMA would have taken away from her if we were not involved in the drug trial study. We are so blessed to be right where we are today. I just have to continue to remember that everyones' days are numbered, moments are precious and God's plan is everlasting!
~Thanks for stopping by~