It’s been a week and a half since Gabe’s MRI and our meeting with the neurosurgeon. Anyone who knows me knows I avoid talking on the phone at all costs possible (even if it means spending 45 minutes exchanging hundreds of texts to figure out dinner plans), yet here I am constantly checking my phone to see if they’ve called. Just twiddling my thumbs, waiting for our date. Not that I’m eager for him to have surgery — I’m eager for him to be past surgery, on the other side. In the meantime, we just wait.
I’ve had plenty of time over the past near-month to reflect on many things. As someone who’s not religious, I can’t fall on the, “This is just what God planned,” crutch, so I’ve instead focused on the good things that have come of this. It’s easy to go down the self-pity, “why us?” path, but that serves no one and really just makes me feel worse. Quite frankly, I don’t want to feel worse. Positive thinking makes me feel so much better.
So here we go:
- It was caught fairly early. Gabe was four months old at diagnosis. Sure, it could have been caught sooner (Dear BOTH pediatricians who missed it — study head shapes, mmmkay?) and he could have been a candidate for endoscopic surgery, but, as selfish as this sounds, I don’t know if I could have dealt with that with a newborn. Four months had me past most post-partum depression/the worst of post-partum anxiety and just in a better place mentally overall. And it’s still early. I see kids who get diagnosed as toddlers, when the risk of inter-cranial pressure (ICP) and other symptoms sometimes develop. He is not being affected by this and hopefully surgery will ensure he never is. Yay!
- It was diagnosed immediately. There was no waiting around and wondering. The pediatrician was fairly confident when he said it. The cranio-facial doctor was very confident. We didn’t have any inklings at all about it, so there was no wondering, trying to get referrals, etc. It was just boom, your baby has metopic craniosynostosis. Sure, I felt like I was kicked in the teeth (and then stabbed in the heart 17 times), but it was simple.
- Our care has been outstanding. They have taken the reigns and directed us through this all. The pediatrician gave us a referral, the next surgeon had his nurse set up our other appointments. We don’t have to navigate a complex system trying to figure out who to see, who to call, or what to do next. We were told. And when dealing with an infant who needs surgery, you just want to be told what to do without extra complications or confusion.
- We have TWO local teams! Some people have to travel hundreds of miles for one. We don’t. If we don’t like the care we’re getting at Ochsner, we can switch to the very qualified team at Children’s. Both are only a few miles from our home. That is a huge relief. People from around the neighboring states come to these hospitals, but for us, they’re local.
- Gaby is okay. Parents get much more devastating diagnoses. Even craniosynostosis can be worse. When we were in the first few hours/days, I didn’t know what we were looking at. There were many possibilities and some of them weren’t good. He’s okay and he’s going to be okay and for that, I am unbelievably grateful.every.second.
- It’s reminding me of how strong I can be. When we first found out, I wanted to scream. I wanted to cry. I wanted to just run until I broke. The idea of my baby, my baby, needing cranial surgery seemed impossible to digest. And I didn’t want to digest it because I didn’t want to accept it. But I had no choice. On top of not having a choice, I had to continue on with life. I still have to parent. I still have to partner. I still have to work. I cannot fall apart, especially over something I can’t control. So I have to be strong. Some days it’s really freaking hard and I want to crawl under a blanket and make the world go away for a while. But, when I make it through those moments, I breathe a sigh of relief at what I am capable of.
- I can’t think about the surgery date. I can’t stare at my phone 24 hours a day. I can’t think of recovery. I can’t cry every time I kiss Gaby’s unscarred head. So I plan. I’m lost in mental escapism. We’ve picked out a house to rent for Christmas in Mexico. I’m planning our driving trip there for the summer, too. Guadalajara, volcanoes, Palenque. Instead of thinking of seeing my baby hooked up to machines, I imagine him taking steps in an old Colonial city. Instead of thinking of the five sleepless nights I’ll spend in a hospital, I’m dreaming of the sound of crashing waves lulling us into slumber in a giant house filled with family and Christmas cheer.
- I try to never take my family and friends for granted anyways, but holy $h*& are they ever the most amazing people EVER. From sending us dinner, to mailing a care package the night before the MRI, to texting and calling to see if we’re okay, we have constant reminders of how much people care. I try to only surround myself with wonderful people and damn, I’ve really outdone myself.
So, there. A whole list of very positive things that keep me going. And will continue to as I wait for my phone to ring (but only for the right caller). Until then, I’ve got to go back to looking at rental homes in Playa del Carmen