After being home for just under a week, we had our first pediatrician's appointment. My doctor came in and went right back out to get some paperwork (I knew it was the result of our genetics testing...the karyotype test that would give us our fate). She sat down beside me and said, "Morgan, we got your test results back, and they're positive for Trisomy 21 that's consistent with Down syndrome." I took a deep breath, said ok, and tried to keep it together, which I did successfully for about 3 minutes before my chin began to tremble and the tears pooled in my eyes. You know, we knew this was a possibility, but it didn't make it any easier when we received the news. I guess that as a middle school teacher I see how hard life can be for kids who are different. My poor kid will always be the kid that others say, "Aw, he's so cute" about. Or the one they make fun of. Or the one who has the false impression of friends. Or the one who would manage the teams but never truly a part of them. Immediately flashes of what wasn't to be ran through my mind at a million miles an hour. I couldn't help but mourn and grieve for what wouldn't be for my child.
I called Dan to see when he was coming home. He could tell something was wrong but played along w/ my charade. As soon as I hung up, I received a text from him asking if I needed him to come home now. I responded and told him I was fine. The next second he sent one back asking if Bear had Downs. As much as I wanted to ignore that text and just allow him to go through the last couple of hours of work, I couldn't hide this from him. I wrote back yes, and he was home within 20 minutes. I tried to be strong but couldn't help from crying We both did our share of crying that night as we shared the news with family, gave up dreams we had for our child, and prepared to face the unknown.
Today, 5 days after receiving the news, I can honestly say I'm at a much better place than I was on Monday. However, it doesn't mean I don't still grieve the child that could've been. Yet I know there's so much in store for us. I read all these encouraging accounts of parents of children with Down syndrome, and they speak of unconditional, unspeakable love that results from their child. In fact, that's all that anyone can say right now in an effort to comfort me. But that's easy to say when you're sitting on their side of the fence. When you don't have a child w/ special needs, it's easy to tell people about how he's going to be so loving and how we'll all love him so much and learn so much from him, etc. It doesn't make it any easier for me to let go of what could've been. I know God will heal all of that in time; I trust he will. I know eventually I'll enjoy Holland (if you don't get this allusion, there's a pretty cool story out there...just can't think of the title right now). But right now, is it ok if I have a bit of a pity party and feel a little resentful about it?
1 comment:
Morgan,
I can relate to every word you just wrote. I went through the same feelings when Jarrett was diagnosed with Williams Syndrome. In fact Joey wasn't at the hospital when he was diagonsed, either.
The first 3 months of his life are still kind of blurry, either from lack of sleep or my subconcious just tring to forget how difficult it was. But I remember Dr Bader Jarrett's geneticist) walkeing into his hospital room like it happened this morning. She walked in and introduced herself. Jarrett was laying in the crib, which was unusual because he was beyond colicy. They had just placed an NG tube for feedings. She looked at him and said "Oh, He looks like a Williams kid." I had never heard of Williams syndrome, so she took a moment to explain it to me. I remember looking at her from over the crib thinking, and I feel so guilty about it now, but thinking "Please, please! Just don't say mental retardation!"
She did say it of course, because it is part of the syndrome. I just felt a whirlwind of emotions. I felt guilty...like it was my fault somehow. I was sad. And guilty because I was sad. I was angry and resentful.
I think that it's totally normal to have a plethora of emotions with this kind of news. Being resentful and sad is part of it because you are in a state of almost mourning for the child you thought you had, and the potential life that you expected them to have. It took a short while to get my emotions in check and realize that this WAS a blessing. But, it's totally okay to feel what you're feeling. Emotions are not always something that we can control. They just are what they are. The only thing we can do is deal with them as they come.
I love you guys and you are all in my prayers. If you ever need to talk to someone who has been there, give me a call!
Annette Edgell
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