I remember every detail of the day he was born. How it felt to hold him in my arms for the first time. The way he smelled. The first time he smiled. The first time he rolled over. The first laugh. The first word. Unforgettable and overwhelming blessings that I am so deeply thankful for.
SMA has a nice way of sucking the life out of you. I promised myself after he was diagnosed that I would NEVER focus on the things he couldn't do. We would adjust things however we possibly could and make him able, as well as focus on what he can do. No matter what. Little did I know how hard that promise would be to keep.
I remember how frustrating it was even just last summer trying to piece together some of the toddler phrases that he used. How I longed for his speech to improve and how I looked forward to be able to have understandable, real conversations with him. Well now that is exactly what I have. He is such a joy to talk to and pleasure to be around. But with everything good, it seems that there is a challenge to follow.
As hard as I try to stay positive and strong for him, sometimes I completely fail. I too am trying to figure this all out and often I find myself not handling particular situations as well as I would like to. Then I remember, this life is hard. This situation is hard. There are some things that can only be learned through experience. What I have been given to handle is always trying but I wouldn't trade it for the world.
Last night was one of those times. When I longed for Noah to be able to have conversations, what I didn't think about was his awareness of himself and other people. That has been exceptionally difficult.
Since it has warmed up the boys and I sit outside for about an hour or so as we wait for Lane to get home. It's nice to enjoy the fresh spring air after such a long winter. Typically every evening Noah asks to play with either trains or cars, and last night he wanted cars. So as I sat with him he told me he wanted to stand on the dirt. Dirt meaning 'in the flowerbed'. I looked at him puzzled and repeated what he said and his response was "yes mama, I want to stand on the dirt". Still confused I asked him if he was wanting me to bring out his stander. He became very frustrated and yelled "no stander. I want my feet in the dirt and I want to stand". I have no idea how long it took me to get words out of my mouth in response. I was totally speechless and in shock. How are you supposed to respond to something like that? I've dreaded this day for a while. He is now beginning to make observations and say things that completely baffle me. It was so heartbreaking. He went on and on begging me to stand. Something so simple that I myself take for granted....to be able to stand.
These are the challenges that I dread and fear that if I handle them incorrectly, I may damage him. I said the exact thing that I promised to never say, out of sheer lack of words...."you can't". I Failed, miserably.
After crying with him, I told myself I am learning too. Next time, and I KNOW there will be one .....I will have myself better prepared.
