Three little examples of how I am figuring this out:

1.
Every few days Atti will have obvious pain in his gums. So far he’s got two little bottom teeth and a new one just started poking it’s head out of the top. One day last week he was just inconsolable. Tylenol wouldn’t work, cuddles didn’t help, Bear was so frustrated there was nothing he could for him. I picked Atti up and started massaging his gums with my fingers. After just a few seconds he looked up at me with surprise and broke into a huge grin. Oh how my heart melted. I fixed it. Mama made it better.

2.
Atti has to get at least two shots a month, this month he’s had to get eight. His usual nurse knows our routine and when she’s all done with his shots and he’s cleared for cuddles she always says, “OK mom, it’s singing time!” since she’s watched as month after month I pick him up and start to sing and he stops crying before she’s even cleaned up. This month we had a new nurse for one of the appointments and after his shots were finished I started to sing his favorite song. The nurse just snapped her head up and said, “Wow. *That* worked.”

3.
In his physical therapy, there are a couple of exercises that we return to over and over again, because they’re important stepping stones on to more mobility and because he refuses to do them. There’s one exercise that requires him to kind of do an oblique sit up. For most babies it’s instinctual, but for mine it involves a lot of training. We’ve been working on “trunk righting” (or sitting up without falling over to the side) for nearly eight months now with very little change.

Then one day I was playing with him and making a K-k-k sound, just to introduce the consonant to him. I’d come forward towards his face with each K, and then I’d boop his nose with my nose and say “Kitty!” He just thought it was the funniest thing he’d ever seen in his life and laughed until he gave himself the hiccups. I noticed that he liked it so much he’d start to bring his head up to mine, meeting me halfway with a little sit up so I’d boop our noses together. As an experiment I turned him to the side and watched as he suddenly mastered doing that sideways sit up we’ve been working on for his whole life, just to touch noses with his mom.

Heaven knows there are enough frustrations and failures in the day to day of parenting. I’m writing these down to remember that when I succeed, there is no other feeling like it on earth.

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.