Entry Twelve- Good News

Is accepting good news hard for anyone else? It still is for me. It is weird. I think that from the outside looking in it is difficult to understand why accepting good news is tough. “Celebrate all the wins” is what people have told me. I did celebrate a “win” once and I got crushed by it 2 months later. It was devastating. So I have protected myself by never celebrating and therefore I can never be crushed.

My son had a really rough first year of life between the seizures and receiving his genetic diagnosis and then through last winter he had pneumonia several times and was hospitalized for bronchiolitis. More trips to the ER than I can remember, 3 ambulance rides and 3 inpatient hospitalizations. But, despite all of that, my son has been steadily making gains. He is developmentally delayed, but he continues to make slow, steady improvements. He is doing better than what was expected. But I still find it hard to “celebrate”. I need to learn how… We did receive good news yesterday and I wanted to share it.

My son has “extensive” (as described by neurology) polymicrogyria (extra folds in the brain) in his bilateral frontal lobes. This was caused by a genetic disorder called 1P36deletion syndrome (my son is missing a portion of his first chromosome). These diagnoses have caused a host of issues for my son; seizures, developmental delays (cognitive, social, gross and fine motor as well as speech delays), hearing loss and heart defects (minor and haven’t caused any functional issues to-date). We have been told since he was diagnosed that his condition is “worrisome” and seizure control can be very challenging and that many children are resistant to medication.

He is now over a year seizure free. He had an EEG (electroencephalogram used to assess the electrical activity in the brain) yesterday and then when we met with neurology after they told us that his EEG was “close to normal”. WHAT!!?? A mix of emotions came over me. That is the first time I have ever heard “close to normal” and my son’s name in the same sentence. This gave me an opening to feel hopeful…. very scary. I don’t want to be crushed again.

I asked neurology, “how can you explain that?” and he responded, “I can’t”. I don’t understand, how can the MRI of his brain represent something that is “extensive” and “worrisome” and then his EEG can be “close to normal”? He said, “I don’t know, it surprised me too”. I cried. I was overwhelmed with hope and with the fear of hope. Has anyone else felt this? I have grieved enough and will continue to grieve certain things over the years. But I think I am going to try to accept this good news. I think I am ready.