We have had a quiet few weeks. It has been beautiful. To relax; to enjoy Kiran. To relish every smile, every laugh … He’s been sick. We’ve been watching his breathing. There are always medical concerns, and I am often on high alert … but we haven’t been to the ER. We haven’t had any major news bulletins.
It was the calm. I love the calm.
This morning has been overwhelming. In just the couple of hours since I posted the eye update, life has changed for us. I have always been so amazed by how moments can change the trajectory you’re on. Words can make your heart stop.
Perhaps I am being too dramatic, but it all feels very dramatic to me, right now.
I scheduled Kiran’s g-tube surgery this morning. I thought this would be the big news of the day. May 18th, two weeks from today, he will be put under anesthesia and have a g-tube placed. As soon as I heard the date, my heart started racing. It is time – we know it is the right thing for him – but it’s in two weeks! Anytime Kiran is put under anesthesia (this will only be his second time, thank goodness!), it is risky. It is scary. It will be a hospital stay, likely 2-3 days if everything goes well in recovery. It will be a new skill to learn. Another change. Another procedure for Kiran to endure.
And then I got an unexpected voicemail from the eye doctor in Iowa City, wanting to discuss something he found in Kiran’s genetic results. We knew Kiran had a minor deletion. It is a band on a chromosome that not much is known about, so it didn’t really give us any new information. We simply know there is a genetic abnormality, a small deletion, but we don’t know what it means.
Apparently, this small part that is missing is near a gene that causes brain malformations. This could be a very real possibility for Kiran and could explain what is going on with his vision.
Let me stop for a second. Those are the words that changed things for me. No mother wants to hear the words “brain malformations” when talking about her child. It matters not that I have known all along this could be an issue we would face. It doesn’t matter that I have suspected brain issues from the beginning – a mother’s sense, perhaps – none of that matters. When you actually hear a doctor tell you it is a possibility the structure of your child’s brain may be abnormal…the world stops.
I immediately come back to this truth: He is still my Kiran. He is who he is. If his brain is malformed, it has been that way from the beginning. It doesn’t change who he is. He is my brave, sweet fighter. It certainly doesn’t change my love for him.
It does, however, scare the hell outta me. It does overwhelm me. It does put me back in that place where I wonder: Can I do this?
I can. And I will. It makes getting that MRI ordered, hopefully while he is already under for g-tube surgery, even more important. We need to see if there is something going on in his brain. It won’t change who he is, but it will help us help him. It will help us prepare for his future – it will help us know what that future will look like.
I am scared. I am scared for him to be put under anesthesia. I am scared to find out news about his brain. I am scared of how everything will pan out with heart surgery timing at Stanford. I’m terrified. This morning, right now, in this moment – that’s where I am.
Overwhelmed. Terrified. And sad.
This. Is. Hard.