Nathan has developed a new medical problem. Lucky him. Lucky us. It doesn’t have a name. In fact, we are beginning to wonder if we will even be able to diagnose it at all.
Since January he’s had eight episodes of tachycardia (that’s when your heart rate sky rockets). It goes so high that his oxygen levels drop and he becomes limp and listless, like he wants to fall asleep. At times during these episodes, which last anywhere from 15 to 45 minutes, he becomes unresponsive. Sometimes an ice pack to the face will arouse him. If he vomits he will usually come to very quickly afterward. It’s very scary to watch.
So we’ve been doing some testing. His cardiologist ordered an event monitor which he wore for 48 hours. Of course, because we’re lucky that way, he did not have an event during the time he was wearing it. His neurologist ordered an EEG in the office which revealed abnormal background activity consistent with developmental delay. So in other words, nothing conclusive. It feels like we are ping-ponging from specialist to specialist. Maybe it’s his heart. Maybe it’s his brain. It’s quite possible that it’s a GI related issue resulting from him not being able to handle the volume of food we are feeding him. Maybe it’s his big toe! I have no idea!
The next step is to admit him to the epilepsy floor, which we did last night. I’m not jumping up and down about this option but now that he’s all hooked up to monitors it’s our best shot at understanding out what’s causing these strange episodes.
I struggle almost daily to know how to advocate and fight for him, but also to accept and surrender to his medical challenges. I don’t know how serious this is and if his heart will suddenly stop from working so hard. Or, if this is just part of who he is and we must learn to deal with it his whole life long. I want to be hopeful for what could be, and at the same time, accept what is.
I live in a tension between advocating and accepting. When I take these two–advocating and accepting–and incorporate them together in my parenting I end up in a place of surrender. Surrender looks like letting go of my plans each and every morning. Advocating when necessary. Accepting what I can’t control.
Surrender looks like:
Admitting him to the hospital as we head into Easter weekend.
Admitting him as my parents are headed to town and I’d rather be shopping and getting a pedicure with my mom.
Admitting him while big brother has so much going on at school for the special needs unit.
Admitting him to the hospital when there’s no guarantee he will have an episode during the five days he’ll be in-patient.
Admitting him when there’s no guarantee if he does have an episode that will reveal any helpful information for the doctors to understand his body.
Admitting him knowing that we may never know. And that that’s okay. That we will live with the risks of the tachycardia.
Yes, surrender is letting go of what I want for the sake of loving my son well.
So please pray that he has one of these crazy scary heart events in the hospital. I’m really hoping that he will have an event on the front end so we can get out in less than two days.
But now, Lord, what do I look for? My hope is in you.” – Psalm 39:7
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!