No, I'm not okay. Thanks for asking.

Ah yes, an even deeper foray into the life of yours truly. You see, my 8 year old son has Muscular Dystrophy. This isn't usually a conversation starter for me but this is a blog, and it seems that as a blogger, it's my duty to peel back the layers and expose these bits of my life. So there you have it. My 8 year old son has Muscular Dystrophy. Infantile Onset Facioscalpialhumoral Muscular Dystrophy actually. This means that my young child over the last 2 years has lost much of his ability to walk, see, hear and has a complete palsy of the face. This means that because of about 100 doctor's appointments this year I've had to remove him from school to save him the embarrassment of failing the second grade. (However, this has turned out to be a boon for us. I'll blog more on this later.) This means that he must wear, on a daily basis; glasses, hearing aids, AFO's (leg braces) and let us not forget the oh-so-stylish gauze dressing on his feeding tube. Then of course there is the ultimate accessory, the wheel chairs.
It's a funny thing when you have a child with issues like these who can't leave the house without a truck load of equipment and who, everyone knows, will never get better. People ask the same thing over and over. "Are you okay?" Funnier still is the reaction we parents are expected to give. "Yes, I'm fine!" and "there's a reason for everything", or "I was only given the challenge because I could handle it". Most people don't ask you this question expecting to hear the truth. My truth? My truth is that no, I'm not fine. I'm pissed off. I'm pissed off that my child is being given such a raw deal. I'm pissed off that he has the grace to except it and that I don't. I'm pissed off that I worry every day about him and I wonder relentlessly if he'll ever be able to live on his own, have a lover, travel somewhere fabulous, father a child, live in a dorm, kiss someone, and and...
I'm coming to understand that it's okay to not be fine. I am always fine when I'm with him. I'm always together when we see his doctors, I rarely let myself not be "fine". But every once in awhile, when I'm all alone, I give in. I let go. I cry, I scream, I throw things and at those times I yell to no one and to everyone, "NO! I am NOT okay!" and you know what? I'm okay with that.
Here's the thing. I'll never be "okay" with this. I have, however, learned so much from this child and from this disease. I have learned patience, righteous anger, the true meaning of beauty, I have learned that I can be a kick-ass mom and that I have more strength than I ever though possible. That John is a fantastic father and that together, we can handle anything. I have come to understand that my son is incredible. He is the most adaptable being I have ever met and my heart bursts with pride when I think of how he has come to live with his ever-weakening body with acceptance, grace and with just enough of a stubborn streak to refuse to take this lying down.
Am I okay? No. Am I getting there. You bet your ass.


Anonymous said...

We learn so much from our children. There are days when something seems overwhelming and we wonder how we will ever get through, and then we look at them. We see their eyes. We see how they interact with the world, how they see the world. Sometimes, they leave us feeling weak in comparison to their strength, but in truth, they share that strength and we move on to another day.

lisa said...

YOU are so fucking awesome! And its ok to not be fine. You are my hero!

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