Thursday, September 16, 2010

The Bleeding Heart

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I've shed plenty of tears behind closed doors. Today was the first time my heart flooded and the tears were uncontrollable in public. I hate that I exposed my raw spot. I try to keep it closed in a little box, and nurse those feelings carefully always in private. No one really wants to see a special needs mommy crumble. We're supposed to be little superheroes. Able to handle all that God throws our way. The strong shouldered, the habitually and overly positive, displaying bumper stickers and signs of hope, faith and belief in all things. We are to be the rocks that nothing breaks against.

Noah was very upset today over the kidwalk, possibly from having shoes on, maybe it just traumatized him in general. I really don't know. This is the second time he's been in one. The first time really went reasonably okay other than he was still a bit too small for it and didn't touch the ground all the way. Today he was pretty hysterical with lots of tears and snot. My heart is broken for him. I am broken. I am broken that he even needs such a thing, that he can't move on his own. That he can't sit, crawl, walk, or even talk to me. I hurt, I ache, I long for him to have everything that he should have had. The hardest thing for me to accept is I cannot fix this. I cannot do anything to make it better. I cannot undue the damage caused to him at birth. And then you feel like you're torturing him with all this therapy, trying all these things to help him. I can't handle it when he's distraught. I can't make it better, and that is my job as mommy to make it better. We were loaned the kidwalk which didn't fit super securely in the back of my car. Driving home I just kept asking myself how am I going to do this? How am I going to make this all work?

I feel like I could cry for an eternity. Life has compounded Chris and I with all of these unexpected problems. Never in our lives did we ever expect things to take this turn. We're doing the best we can with some really difficult circumstances. Putting on those brave faces each day, trying to come out swinging, you can't raise the white flag and give up. That's not an option, you can't bail out or surrender. You can't even ask for a timeout. That isn't possible when you have a special needs child. You trudge on.

I'm sure there are some out there that read Noah's story and take pleasure in our pain. To know that life isn't all cherries and roses all the time. Those that thrive on chaos. Chris and I love the problem-free life. We want our happily ever after. But I would be lying if I painted this picture all the time of nothing ever being wrong. We want Noah to thrive, and be happy, to recover in any way possible. Some that have CP tell me that I should be so happy for Noah, that CP isn't such a bad thing. But to a parent that watches their child do nothing but struggle it's a terribly crushing thing.

It's the same if you have a terminally ill family member, or someone suffering from alzheimer's or muscular dystrophy, or a cancer that slowly takes the person you love and know. It's the same pain. Because you are helpless to change it, to fix it, to make it how your heart says it should be. Is life about accepting it all? I don't know. I want the answers, I want that life book that God fails to provide you with as a guide. I want to know why some are so charmed while others struggle so deeply. I'm not mad. In all of this I've never ever sat down and cursed God for what he did to Noah. Not even in the beginning of those 17 days in the hospital. Never once did I ask why. Never once did I tell him how unfair this was, never once did I yell at him for what happened. I prayed hard he'd let Noah just stay, he did. I asked the angels to help him but not take him, and they did. Should I have asked for them to make him whole too? You just ask for a little, I got a little. Now I feel guilty I want more. I want Noah to be okay. I want to live to see him walk. I want to live to see him talk, to run, to play ball, to say I love you.

Please God, hear my prayer today and please put a band-aid on my bleeding heart.


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.