Onwards and upwards! Today’s topic is either something I don’t know- but I’d like to or a conversation with your doctor. Since I’m always learning about CP, I’m not sure where to go with that one! I’ve had frequent conversations with many doctors in Jillian’s care. One that I will never forget is the day we received Jillian’s diagnosis. I actually did a few quick searches and didn’t come up with the story of her diagnosis. Surely, I thought I’ve told the whole story here before!
It was a sunny and unseasonably warm day in October for Toronto. The girls and I were both wearing short sleeved shirts to head into see the NICU followup team. (Most premature babies are followed by a team to see how they are comparing to their peers) Jillian had a sedated MRI performed at the Hospital for Sick Children in September. Knowing results can take a while, I didn’t think it was necessary to ask Adam to take the time off work to come with us. So I went in with both girls in tow.
October 23, 2009 will always be a day etched into my head. Jillian was army crawling (or attempting to) on a blue mat and Lauren was seated beside me asking for a snack. The doctor didn’t keep us waiting long that day. He came in with a medical student in tow and sat down across from me. The med student looked as if she was going to get down and play with Jillian. Instead, I’m pretty sure the doctor sent her out of the room.
Instead of the usual formalities (we switched to this doc because he would focus on what Jillian could do, and not on what she couldn’t) he pulled up a chair and sat directly across from me. The girls were still playing relatively happily on the floor. The doctor started with “We have Jillian’s MRI results…” I wasn’t really prepared for this. Honestly. Even though the MRI was done in September, I figured we’d hear the results from Jillian’s pediatrician and not the follow up clinic.
I had known something was up. I knew something was up when Jillian was 6 months old (via calendar, not adjusted). Although we’re not supposed to compare children, I knew what I was looking for in “typically developing” children. Jillian was no where near that- even when factoring in her adjusted age. And although I suspected something was up, I was still surprised when the doctor said “She has cerebral palsy. As far as we can tell right now, spastic diplegia”.
The room seemed to spin a little. I had a weird feeling in the pit of my stomach. Lauren asked for a snack and Jillian needed a drink (and a nap.) I felt as if I had the wind knocked out of me. But somehow, surprisingly (to me), the world continued to turn.
Before we left the office, the doctor put his hand gently on my knee (I always feel I need to say that it wasn’t creepy!) and said “It’s ok to grieve”. What? What did he mean?! I only associated grief with death! I still had 2 relatively healthy (and alive) children. It wasn’t until a few weeks later I understood what he meant.
Just as grief has a process, so does parenting. And even moreso, special needs parenting. I find myself at times reevaluating our dreams and goals, but I’m pretty sure that’s a “typical” parenting thing.