But the truth is that it didn’t matter whether I was being overprotective or irrational. There were things that gave me extremely painful and debilitating anxiety and instead of saying, “Hey I’m sorry, we just can’t have visitors right now.” or “I am really just uncomfortable with kids holding/touching my baby. Period.” or “No, I’m going to hold him. He isn’t going to be passed around.” – I said nothing. In my own home, I would leave the room to go upstairs alone and sob because more than 1 or 2 people visiting at a time made me sweat profusely and watching other kids (whom I love dearly) hold him and touch/kiss his face and hands made me nearly break out in hives. I would politely and timidly remind anyone who held him not to do that but rarely felt heard. And instead of speaking up, I hid and felt ashamed of myself. Ashamed that I was upset by these things and equally ashamed that maybe it was ok to be upset by these things but that I couldn’t bring myself to say anything about it. I was at war with myself in my own head, “It’ll be fine. You’re being crazy. Just get over it.”
And then Landon contracted a rare disease at 10 weeks old that has a very short period of time for diagnosis and treatment – Kawasaki Disease. We were lucky to have a pediatric hospital nearby that knew the signs but even still, they didn’t diagnose him until the last possible day for treatment. It is difficult for me to talk about the 11 days we spent in the hospital and the what-ifs and the almosts that took place during that time. With any little change in location, doctors, specialists, or timing I could be writing a completely different story about how I never got to know my son.
But we were blessed, lucky, and all of the other words that describe what it feels like to stare down the barrel of a gun and come out of it feeling like God intervened at the last possible second. I’m in KD survivor groups full of parents that can’t say the same and it breaks my heart every day.
After Landon was treated with IVIG in the hospital he had to take baby aspirin daily for quite a while and we were advised to keep him away from crowds/germs/kids because if he were to get sick while taking the aspirin it could cause Reye’s Syndrome. So basically the ongoing treatment of his enlarged arteries could potentially be fatal if he got sick. Comforting, right?
I was not the same for a while after all of that and my anxiety certainly skyrocketed, but now there was a buffer. He was sick and people knew that. He was having regular ECHOs and had to have a heart cath to rule out a potentially hidden aneurysm. Thankfully he grew and things leveled out. He went off the aspirin, he received vaccines, he never had an aneurysm, and we were released from the cardiologist for a few years unless something concerning came .
Now here we are again with baby number two due any day. I am faced with the same anxious thoughts and fears magnified times a million but I will not let myself feel ashamed this time. I cannot worry about anyone else’s feelings. Irrational, overprotective, crazy – I won’t call myself those things this time. I won’t suffer in silence. I know that no one asked me to the first time.
No one knows what causes Kawasaki Disease and we will likely never know why he got it. I have to accept that there is nothing I could’ve done to prevent it. I know that at my core. But it doesn’t change my anxiety. It doesn’t change what I need in terms of postpartum care and it’s ok that what I need looks completely different from what someone else needs more info at Heartwood States.
