A little sad

Every year we try to take the boys for pictures around Easter time. This picture was taken when Owen was just about 4 months old. We have it framed with lots of other pics of the kids in our living room. Every time I walk by or dust I always get a bit upset when I see this picture.

This picture represents the limit of Owen's physical strength. The position he is in know was as advanced as he ever got. If we tried to put him in the position now his head would be completely on the blanket. He hasn't been able to lift his head like that in over a year.

It is so strange to me that this is one of the only pictures we have of Owen like that. It seems like it is almost a different child- the picture represents time when we had two healthy, happy little boys with so much potential. This was before the worrying and the nurses and doctors. It was before our life changed forever. At this time we still pictured our boys running and chasing after each other...jumping and wrestling together...climbing trees and skipping through puddles. I almost can't remember that when we were just so unaware that anything could be wrong with Owen.

Now our sweet boy is so limited physically. It breaks my heart daily to see him struggle so much. He has trouble with the most basic tasks. Even holding a crayon is a major thing. He doesn't have the strength to hold it and color. He loves coloring so much and it is just devastating to watch your smart and motivated child not be able to even apply enough pressure to make a mark in a coloring book.

Owen barely rolls...he has trouble moving and holding his head...he will never sit up independently...he can't lift his head or even turn his head if he is on his belly...he is just so limited physically and there is absolutely nothing we can do. The therapists do an amazing job with stretching him and working on his strength but you can only do so much. They are not magicians.

Owen's nurses have been taking him for walks daily, which he absolutely loves. The feel of the wind and air on his face makes him smile every time! I was leaving the other day to run some errands and I drove by Owen and Kathy Lee who is one of his nurses. I stopped to beep and wave at Owen...when I drove away I looked in my rear view mirror and I started to cry( which I don't do very often at all anymore) . Owen looked so handicapped to me. If I had driven by and not known them I would have felt so badly for him. He was all strapped in his chair and had his feeding pump attached and hooked up. It literally hurt my heart. I am with him so much that I guess I just forget sometimes how disabled he is, but driving away with his image in my mirror just made me reflect and remember how different our baby is.

It is a strange feeling and hard to express. We are totally accepting of SMA and what it has done to our family and to Owen. We know what to expect and have met many other children older than O. We know what is coming and we know what to anticipate. We are not angry and depressed about this...it is what it is and nothing we can do can change Owen's disease. But, every once in a while you get a flash of how horrible and devastating SMA is.

Hope this isn't too depressing...I am just trying to be honest and paint a truthful picture of what it is like. Most days are fine and you are just so busy to even think about things too much. Once in a while though something will happen and it feels like all you can think about is how unfair and horrible this disease is. Knowing it is slowly robbing your amazing child of so many things is a gut wrenching feeling.

On a better note- Owen is feeling much better from his virus and is doing much better on the continuous feeds. He is hooked up to the tube about 22 hours a day and his vomiting and reflux have declined drastically. He is sleeping more soundly and is overall much more comfortable! Hooray!