Determination

I can’t help but sit here and feel anxious for tomorrow. I can’t exactly decide how to feel. Should I feel hopeful? Should I feel sad? What way should I go?

Tomorrow our son is having a repeat MRI to assess his cerebellum. His neurologist wants to see if his cerebellum is still shrinking and at what rate. Shrinking. His brain. These few words bring tears to my eyes. I could feel hopeful that it hasn’t shrunk anymore in the last year but according to the neurologist at the Mayo Clinic this is highly unlikely. We were under the impression that around age 5 the cerebellum was done shrinking, but he informed us that’s because there’s nothing left. Oh. All of this time I was still hopeful that it would stop shrinking and there could possibly be something left. Not the case. There could be nothing left. I have to believe that this isn’t absolute. Research is limited and CDG is rare and very diverse.

I asked his neurologist if we needed to have an appointment after the MRI and she said “not unless you want to.” She looked at me and said “the MRI won’t change a thing.” Easy for her to say, but she’s right. It won’t change his treatment. He will still have therapy 3-4 times a week. He will still be monitored by all of his specialists. We will still work hard every day to get him to say “mmm,” nod his head, sit up, taste food, or reach for an object of his choice. We will still push on with fierce determination. Most of all we will continue to love him beyond measure.

I know tomorrow I’ll still silently cry in my car on the way to his MRI. I know I’ll feel sick to my stomach until his neurologist calls me with the results. I know I’ll cry when she gives me the results. Good or bad. But I know I’ll still fight for my son no matter what. I will fight for him to move. To sit. To stand. To crawl. To walk. To speak. We will forever fight. So yes, I’ll still feel both sad and hopeful, but most of all I feel determined. Determined to fight for our son.

(He can hold his head for brief moments in his Bumbo chair.)