No, this isn’t a post about the amusement park. The kind of roller coaster I’m talking about isn’t fun, and the people lining up to ride it are few and far between.
The roller coaster I’m talking about is the one that makes me feel exhilirated when my child learns a new skill, and sad when I hear how poorly she’s scored on some sort of standardized test or another.
When Precious was first born and we were at the Neonatal Intensive Care Unit (NICU), we cheered when she drank 30 mls from a botle, and we were going up. Anything was possible and we were hopeful.
When within the first week, the neurologist told us she likely had a congenital muscular disorder, we were crushed beyond belief even though I didn’t fully understand the words he told me and we were going down. My outlook on things was poor and I imagined the worst for my daughter’s future.
Then she started keeping her blood saturation up without oxygen. Going up!
She needed a nasal-gastric tube to eat. Going down.
She gained weight. Going up.
She didn’t gain enough weight. Going down.
She got transferred to a ward from the NICU. Going up.
In fact, when I think about it, most of the happy times right after her birth and in the years since have been when we have been filled with hope. When Precious made progress, no matter how slow it was, we would dream of her ‘catching up’. When she fit in with her peers, or when things seemed easy for her, we would all be filled with joy.
The sad times have been when professionals have made statements about her developmental age (low), her physical characteristics (abnormal), or her reduced capacity for learning, or when we saw how far behind she was of her peers.
DH says “Let’s deal with it and move on”. He’s clearly in the ‘acceptance’ phase. I’m still stuck in ‘denial’ and ‘anger’ sometimes. As I come to accept my daughter’s prognosis, even though we have no diagnosis yet, I hope to be able to find some serenity and stop thinking that some day she will catch up. I’m starting to finally admit that she’ll never be like her peers and that I will be responsible for her care forever.
How do you weather the highs and lows? Are you in acceptance?