22 weeks today.
It's been almost two weeks since we learned of Sammy's HLHS. I'm still amazed at how quickly a diagnosis throws you into a completely different world.
A month ago, the American Heart Association was a great organization that had walks every so often. Now, it's a name we see everywhere; it's become an organization we seek out. What did we know of heart defects? Now - it's something we live with, a vocabulary no longer foreign to our daily conversations.
One thing I'm learning so far in this journey - an awful lot of pregnancies are not perfect. There's a lot of confusion and poor diagnoses and bad doctors and good doctors and strong parents and strong, supportive communities. Before we learned of little monkey's heart problems, I was under the delusion that the toughest part of having a child was the sleepless nights. Now I'm learning that for a large number of people, it's a strange, almost surreal entry into a completely different world, one filled with hope and uncertainty and hospitals and terror and love and family and strength and fear and exhaustion and new friends and this incredible bouncing between optimism and sobbing and back again.
I wish I could describe it better. It is surreal. The tough part is the waiting - the waiting between now and the next EKG in November, when I'm hoping for a positive change but terrified that we'll learn something worse; the waiting between now and his birth, which is filled with so much uncertainty; the waiting between his birth and his surgeries and the waiting during his surgeries and for a control freak, the waiting and the uncertainty is too much to handle sometimes.
We found ourselves in the "Children with Special Needs" section of Barnes & Noble today. Special needs? Us? Sometimes it still boggles my mind that we may become those parents who stay at the Ronald McDonald House, who fall asleep exhausted next to their child in the hospital, who lose all sense of time as the days blur together.
I think we're both a little irritated with the lack of published material about HLHS (yeah, yeah, yeah, I know we ended up with the rarest of the rare, but there was so little even on congenital heart defects (CHD), the largest group of birth defects), though we did pick up You Will Dream New Dreams, a collection of stories by parents of children with disabilities. I've been in touch with two women - one who is a month ahead of me in her pregnancy with an HLHS diagnosis and another who has already been there, done that and has an amazing little girl. These contacts give me comfort, especially in that they remind that all of these emotions are normal and okay.
On a positive note, we bought Green Eggs and Ham for the little monkey, our little Sam-I-am. It feels funny reading to him, because a lot of the "talking" I do with him is internal - this belief that he can hear my thoughts because he's still a part of me. Still, I'm looking forward to hunkering down with his daddy and reading it to him at bedtime. Soon enough he'll be here, and we'll be reading it to a yawny little monkey who will be kicking to stretch out in a bed and not against the sides of my belly.
In the meantime, this will have to do - a little control, a little hope, a little sense of normalcy for now.