Another day in the life of a heart mom. Over the last couple weeks we noticed Leyton’s color looking a little off, irregular heart beats here and there, slower perfusion than normal (when you press the skin or nail and count how many seconds it takes the color to return) and then he vomited. We became concerned that it could be heart related. We are still monitoring residual coarctation of the aorta and pulmonary stenosis since his last cardiac cath procedure in June.
We visited his pediatrician yesterday and cardiologist today, just to be sure all is well. Thankfully we got enough reassurance from his EKG and other stats today that we can wait until his previously scheduled appointment in February for a full heart work up. We are so relieved.
I questioned even taking him in because these could all be (and thankfully are!) perfectly normal coincidences. But we were spiraling down that scary path of what-ifs pretty quickly, so I’m glad we got the extra vote of confidence from his doctors in person. His team is just the best.
When it comes to L, the list of things I DON’T think are heart related is honestly pretty short. We’ve had so many surprises along the way that it’s easy to jump to worst case scenario. A defense mechanism I’m sure, but even if we hadn’t experienced as many twists and turns, it’s our job to be on high alert as his parents and advocates.
Sometimes that job is scary and hard. It means questioning things I don’t have the medical training to fully comprehend. It means making tough decisions because the stakes are high. It means pushing through the voice in my head that says I might be overreacting and asking his doctors “is this normal?” 10,000 times in an effort to put my child’s needs first. It means physically pinning my toddler down through my own tears and praying we get an accurate blood pressure reading this time. It means crawling into bed and collapsing at 8pm, so I can wake up refreshed and appreciate my strong, rambunctious, wildly cute toddler in the morning like never before.
I can be hard on myself when the tough days get the best of me because I know we are fortunate in a million ways. He’s here, he’s healthy, he’s everything I ever wanted! His cardiologist just told me he looks amazing. Yet I sobbed the entire car ride home. I should be jumping for joy. Why am I crying when my child is giggling at my feet and climbing the dog and pretending to bite her and- wait, no. Please don’t do that. Geeeeentle. Sorry, #momlife.
The truth is I can struggle through the challenging days and still be grateful that he’s alive. It’s ok to acknowledge how stressful having a child with a heart condition can be. The trauma of standing by and supporting him through surgeries and complications, the extra time spent with doctors and specialists and the never ending worry is a lot. It just is. And sometimes you have to ride that wave. Let it all out so you can shake it off and continue to show up in the best way for your child. That’s what I did today. I may have drowned myself in tears, but I showed up.
In hopes of developing a gentler approach to self talk when feel overwhelmed, I’m trying this new thing where I treat myself the way I would my sister or friend or a stranger on Instagram 😂 Bear with me, as this feels incredibly unnatural to type, but I’m proud of myself. Yay for just getting through the day.
And while we’re shelling out yay’s, yay you if you also showed up in a way that was hard today. In a year like 2020, that might mean logging on to work or school remotely for the zillionth day in a row, or making your bed, or asking for help, or for the love of god I know some of you are still making sourdough from scratch. I don’t know how but I know you’re out there. Yay you!
Earlier tonight I posted a thread of similar sentiments in a TGA Facebook group. People who “get it” flooded my feed with support and encouragement and it made me want to pay it forward and keep sharing. I really wasn’t expecting to write so much though. I pulled out my phone earlier to jot down a quick update on Instagram and all this came pouring out instead.
Hopefully this post reaches someone who needed it (or hasn’t discovered the wonderful world of Facebook groups yet). The messages and comments I read inspire me to open up about the vulnerable moments because I know so many can relate. So thank you, especially to those who’ve been touched by CHD. Please know you’re never alone. ❤️
