John’s Life Prognosis

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In therapy, we have plateaued. At almost 11 months….he is recovering from major brain damage and I never knew what the recovery process would look like. Well, we appear to be here at the end for now. Plateau is a nice word for not gaining anymore progress. A daunting perspective when you see a child lacking so much in skills and ability. Don’t get me wrong, there are many children worse off than him. But, this is our child. Plateau is an ugly reality.

We are nearing on a year since the surgery on his brain. Recovery from all the damage from the tumor and surgery has been our goal for the last 10 plus months.

What I envisioned is much different from where we are today. I cry writing this because it is a new reality setting in. Our son is going to be handicapped the rest of his precious life. Praise God he has regained as much as he has. He will always have weakness on one side of his body. he will always have weak neck muscles. he will always have weak arms. he will probably always have problems weight-bearing on his right leg…he will probably always have emotional volatility and impulse control issues. It is a heavy weight on me as a mother to understand all of these things.

I imagined almost a year ago that the neuroplasticity of his brain was still very pliant. In my mind we had a year to do everything we could to help him heal before he turned 5. In my mind that made him close to whole and normal. After all, a year is a long time, right? Well, not long enough. He has hit a wall and is not progressing any further in his therapies. so, we have to look at taking a break.

A break to me means more than just a break. It is a breaking point. He is going to turn 5 soon. The brain changes and doesn’t make connections as easily after age 5. healing is much more difficult.

Lets get real for a moment. he had a tumor over HALF the size of his head. The damage is real and not small.

Physically he is weak on one side and overall weaker than his peers. His ability to process information is slow and his visual processing is stunted. He has emotional volatility and is without inhibition. The list goes on…I just don’t care to go through all the deficiencies.

I am sad, immeasurably sad. despairing and sad. I know God has a bigger plan for my son. I know this in my heart of hearts. But, I expected more in the time we had. I envisioned him differently.

I need a new perspective and I will think on it…

enough for now, Faith


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