I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:
A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?
Namine had a pulmonology appointment the other day. She came away with good news: she can now start to be weaned off her inhalers.
When Namine was little, she had to have a trach. It was what allowed her to survive, before she was big enough to withstand the jaw distraction and cleft palate repair surgeries. Even then, it took some time before she was able to be rid of the trach. During that time, we – all three of us: Jessica, Namine, and myself – were changed in ways we couldn’t know.
I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core – “That awkward moment when you realize that sometimes good things fall apart so better things can fall together.”
I’ve seen quite a bit lately on Twitter about grieving your child’s special needs. Most often, this applies to autistic kids (kids with autism? I won’t get into a semantic debate with anyone), but it also pertains, really, to any disability – whether “visible” or “invisible.” And I think it’s a load of crap.
Sometimes we find ourselves pining for something lost, perhaps for something that never even was. It sneaks up on us, Jessica and I, and suddenly we realize that Namine is almost three years old. She is moving, she talking, she is more independent every day. Where is our little baby girl? She’s still small – she’ll always be small – but she’s not small anymore. She doesn’t have a baby face anymore; she has a grown up face, so it seems to us. Can’t we have our baby back?
I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.
This post could easily be called “a look at our nearly three years of parenthood.” I know some moms who would not share this day with their husbands for their life, but thankfully Jessica is not like that. We both feel that we would not be as good separate. We would not be complete.
Namine made progress in speech last night. As I was getting her out of her bath, drying her off and trying to get the all-too-hyper child into her pajamas, she said to me through shivers: “Haha, I ole!” (Papa, I’m cold!) Then she made a noise she’s never done intentionally: “Kuh!” I asked her if she was trying to say cold. “Uh huh. Kuh! Ole!” Even after some more practice with the hard C sound, she still separates the consonant from the rest of the word. But that’s okay. She only just learned to make the noise, after all.
Tonight, after Namine’s bath, she and I were in her room. I was just watching her play, but it’s such a pleasure for me. I love to see that she’s happy, and she loves having her room, a place all her own. She had to do her breather and take her medicine before play time, but she has never minded that.