Recently, my sister was telling me about her first Reiki massage, where the guy waved his hands around to clear her energy. Near the end, he basically pushed his fist into her stomach until he stroked her spine, told her that she didn’t need to be a people pleaser anymore, and then left the room, as Leah laid on the table feeling like “he had just stared into my soul…through my stomach.”
“That sounds like astrology. Everyone’s a people pleaser,” I scoffed.
She and my mom turned in unison and asked me, “Are you?”
I paused for a moment before lifting my chin and replying haughtily, “Sometimes.”
One area in which I am definitively not a people pleaser is in dealing with the Baby’s doctors. (Btw, while he is my baby, he isn’t a baby anymore which means he is due for a new nickname. It is forthcoming.)
I’ve been known to stand in the doorway of his hospital room watching our nurse while she shoots the breeze with her coworkers until she brings us our discharge paperwork.
I’ve been known to burst into tears at random, uncomfortable times.
Once, we were in the hospital and the floor doctor insinuated that she wasn’t going to let us go until we agreed to give him a tracheostomy, which is an extra hole in his throat for breathing that involves all sort of suctioning and rigmarole that we didn’t need. I did a whole lot of private weeping and leaving our PCP voicemails venting about this woman but when she did her rounds, I was adamant and short-tempered and I probably did some high-quality glaring. She let us go.
The Baby has very small sinuses. Part of it is the facial structure of people with Down Syndrome. He also has a very high palate, like a cave in the top of his mouth. It isn’t unusual for a bean to fall out of his mouth hours after he’s eaten lunch, like he was a sneaky chipmunk saving his food for a friend. He also has a giant tongue, which is another feature of Down Syndrome.
All of this affects his breathing, particularly when he sleeps, but it also affects his drinking. Miracle of miracles, despite the fact that he was born so early and so tiny, he’s always been fed by mouth. We’ve astounded medical professionals when they ask if he has any kind of tube to help him eat and we proudly say, “Nope. He does everything orally.”
That’s not to say that keeping him all oral fed hasn’t been a challenge. When he was on a high dose of steroids for two months, our normally sweet, easy-going baby became Hulk Baby and the only way we could get him to eat was if The Kid played his trombone. “Keep playing!” I’d bellow as the Kid’s lips turned to mush.
I sobbed when he failed a swallow study so bad that the speech language pathologist told us that her recommendation was that he drink honey thick liquids. Think about how long it would take you to give your baby a bottle filled with honey. You’d sob too.
More than once, we’ve had to take him to the ER for fluids because he was sick and was refusing to eat or drink. Recently, a side effect of some medications has caused him to lose his appetite. He’s losing weight. We’ve tried all the things the doctors have recommended- the appetite stimulants, feeding him only brownies, singing, dancing, watching his favorite Russian cartoon. You name it, we’ve tried it.
After a long discussion, we decided that it was probably time for a g-button. For those of you that don’t know, a g-button is basically a port that goes directly into his stomach so we can squirt feeds, meds, and water from a catheter syringe when he’s refusing to eat. Instead of taking 45 minutes to feed him half of a brownie, I can make a smoothie with whatever healthy things I can think of and inject it into him.
Agreeing to a g-tube felt like a bit of a failure, to be honest. We’ve fought so long and hard to avoid a g-tube only to end up having one placed anyway. When I was talking to the Baby’s speech therapist about it, she reiterated that she sees how hard we’ve tried to keep him fed orally and that now, it’s time for a break.
In the special needs world, a g-tube is pretty standard but it feels like a Big Deal to us. The Baby’s private duty nurse has been educating me about all of the g-tube things and most of them make me physically shudder, as I’m not one for medical gore, but she insists that we’ll get used to it and that it will make things easier. We will find out because the surgery is happening on Monday.
How funny this special needs parenting life is. It’s all about shifting priorities and rolling with the punches.
Here’s to Plan G!
Beth and Alex, you are some of the bravest people I know! Thank you for sharing your latest challenge. You will all be in my prayers, as always!
Most of life is shifting priorities and rolling with the punches. It’s just harder when it’s your own child and not yourself. You guys are killing it with your boys. You just need one of Aidan’s hugs to know he’s happy and pretty dang healthy given his start. Love you my strong girl.