I must have been sleepwalking through this year. I have absolutely no idea how this happened.
For three months this little picture was all I had to take home with me. The nurses took this picture for me when I was still too sick to leave my hospital bed and see my baby. Atti didn’t even have a name for his first three days of life because I insisted on meeting him before giving him one.
Since I was discharged from the hospital, this little picture has been taped up to the wall next to my bed. To focus on while I pumped breastmilk, to keep me company during those long nights away from my baby, to remind myself that it really all happened.
Even now I still occasionally find myself forgetting that I really am a mom. The whole thing was so bizarre – after eight marathon years I was pregnant for less than 7 months and whisked through delivery so quickly that it took less time than a standard doctors appointment – I still have trouble shaking off the disbelief.
Having a disabled child was one of my biggest fears going into motherhood. I have big dreams for excellence for him. I want a fancy school, I want a love of knowledge, I want music and language and exceptional skill. The thought of having a child who wouldn’t be able to pursue those things was so terrifying I couldn’t even speak the words out loud. I believed with my whole heart that I did not possess the strength or talents needed to parent a child with special needs.
But since this is my life, and I have a long history of getting exactly what I thought I didn’t want, a special need baby is just what I got. And yet, I surprised myself. It’s wonderful. And I’m doing it. I used to talk to other mothers of special needs kids, and I never believed them. They’d tell me how much they loved their child, how they were so blessed, how it was hard but they were so grateful, and in my head I’d just think, “What an amazing woman. She is a saint. If this is what she needs to believe to get through her day, then good for her.” But now I know it’s so very true.
I don’t want anyone to think I’m any different than they are. I have no more reserves of patience or love than anyone else. There are days when I resent all the appointments. There are days when I want him to be more independent. And there are days when my heart breaks because he doesn’t understand why he’s being tortured with more shots and exercises and work and medicine. There are nights I sit up terrified that he’ll never be able to use his left arm or leg, because he isn’t using them now, and that could mean 1 of 87 different things including everything in between permanent paralysis or laziness. Every little thing he does sends me swinging between depression and elation as I look towards his future. And then he’ll give me that smile that’s just for me. He’ll stare into my face while I sing him a song, he’ll bring his face up to mine to ask for a kiss. And all I can focus on is what’s in front of me. I drift off into that baby bliss sleepwalking state and I get through it. And it’s wonderful.
One day I believe he’ll be able to pursue all the things the “normal” kids do. He’ll be just as intellectually capable as other kids, and one day he’ll be healthy enough to play ball with his friends, probably. But I just don’t care about that anymore. Atticus is no longer forced to measure up to my dreams of his life, or what the other kids his age are doing. Now he’s on a scale of his own. Every single day I’m astounded at what he accomplishes. What he puts up with. What he smiles through. How much he loves. He’s just such a sweet brave little boy. I can’t believe how wonderful this year has been.
Happy Birthday my sweet little man.
P.S.
The mohawk now has a life of it’s own.