There are many daily revelations that come with having a baby with Trisomy 18. Some of them are new, some of them are the same ones over and over that are just so hard to believe, that they hit hard and knock the breath out of me each time. Like going to the grocery store. Every time I have been since we found out Gabriel has T18, has been hard. This morning I was picking out chicken when a family pulled their cart up beside me with a baby carrier and the tiniest little person in there. I felt like I was going to throw up. Even though that wasn’t the first time I’d realized I wouldn’t be able to take Gabriel to the grocery store, it still stung deeply.
Other things come in waves. I see a friend talking about registering for their bundle of joy. I get email updates from the Bump and Baby Center talking about which car seats and cribs are best. And instead of us spending our evenings looking those things over, we are learning about pediatric cardiologists, methods of delivery, details on heart defects, fluid in the brain, and apnea, and talking about hospice care for our newborn. It all stings.
Often times when I talk to people, I don’t know what to say. I’m getting some rehearsed lines down. We have a general spill that we give to people. And the details and depth of it varies based on who we’re talking to and the situation. But when I’m talking with someone who truly cares and wants to know, I tend to lose my words. And I find myself just saying, “it is what it is”. There aren’t explanations or reasonings that I’ll ever understand. Sometimes I feel as if I’ve accepted it and others I’m lost and confused and unsure how it could be. But I’m always thankful for Gabriel. Every day. I would rather have him and go through this journey than to not have him at all. He is our son. Always will be no matter what happens. And that is what it is.
Be merciful to me, Lord, for I am in distress;
my eyes grow weak with sorrow, my soul and body with grief.