It's funny how certain dates stick out in your mind. For me, February 11th is one of those. See two years ago, February 11th was a Thursday. Not just any Thursday, but the Thursday I had been waiting for for 16 weeks, the day I got to see my beautiful, perfect baby (girl?) floating around inside of me. I'd just started feeling the kicks and pokes and couldn't wait to see inside. I had been surfing the internet for weeks, trying to decide on how to decorate a new room. I had feel so much sicker this time than with the boys, much more like when I was carrying Deborah and Mary. Visions of lace and ribbons and bows danced through my mind, although even then, I knew it would be more than okay if it was, yes, another boy. I'd kinda gotten used to them over the years.
It was pretty cold out, and William had some things to get done, so he planned to meet us at the doctor's office. I was a little worried that he might be late, but sure I could show him the DVD and pictures later if he didn't make it. I'm so glad he was there, so very glad.
We went back and she asked if we wanted to know the gender. Of course, I mean, isn't that the real reason you do this? So she looked around for a while, and found his "boy" parts. She looked at all the other parts too, actually for a little while. Then she pointed out that it looked like he had a cleft lip and palate. I thought, okay, well, that's fixable. And I guess I'm glad he's a boy, because he can always grow a mustache if the scar is visible, and somehow, it's more okay for a boy to have scars on his face than a girl. Then she said the doctor wanted to talk with us. What? Well, okay. But I was supposed to be seeing the midwives, not the doctor.
He came in, I can't even remember which doctor he was. He started talking about how our little boy had some problems, and he was pretty somber. I thought, okay, so he's going to have to have some surgeries. I mean, really, in the grand scheme of things, a cleft lip and palate aren't really that bad. They're certainly fixable.
And then he continued. My baby had clenched fists, and a certain kind of clenched fist, and they hadn't opened the whole time. My baby's legs were crossed, and stayed that way. He had choroid plexus cysts on his brain. All by themselves, they didn't mean much, but with other anomalies, they did. And his heart, his precious heart, the aorta and pulmonary arteries were parallel, not crossed as they should be.
I started crying. I would think I was able to stop, and then I would start again. My poor baby. This wasn't even on my radar. I was half-way through the pregnancy. Way past the "danger time" of the first trimester. I came home and started looking for information. Each one, okay, that's okay. Not good, but we can do this. Even the arteries, Transposition of the Great Arteries (TGA), surgery was being done for that with good results. Then I put everything into one search engine. Trisomy 18. Incompatible With Life. Another punch to the gut.
We met with our perinatologist, a doctor who specializes in high-risk pregnancies the next week, February 16th, (yeah, another one of those dates). When she finished her scan, she turned to me and said, "I'm very sorry. I am almost certain your baby has something called Trisomy 18." I started to cry and she asked if I knew what that meant. I said, "Yes, it's incompatible with life." That was all I could get out. I knew, I knew in my soul when she said those words, I knew she was right. Over the next few weeks and months, we had other tests, including an amniocentesis the end of April which gave us the definitive diagnosis, but I knew back in the office on February 16th. And my soul ached within me.
***************
On Monday, we will celebrate Aaron's 20 month birthday. We have witnessed so many miracles. Among the first was Aaron's heart. His arteries, clearly in the wrong position on his first ultrasound, were in the right place on the second and subsequent scans. As I read back over journal entries from my pregnancy, I am in awe of my Heavenly Father's love for me. Each time as I began to pour out my soul in anguish, He would gently lead me to a greater truth and peace.
Two years ago, I quickly learned that I couldn't read anyone's story if their baby didn't live at least four months. When you don't even know if you'll be able to hold your baby while they're still alive, four months seems like such a long time. So that was my threshold. Aaron has lived five times that long, and is still going strong. He has a mission to perform here on this earth and has been promised that he will not leave it undone. I don't know what it is, but I hope it takes him a very long time to accomplish it. He is such a blessing in our lives.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
No comments:
Post a Comment