Today I feel like my life was brought around full circle. I have quite a few things I need to blather about and this is my blog, so I am doing it here, and you will read it, or you won't, and maybe just maybe, it can help you or someone you know.
In July of 2000, when I found out I was pregnant with Sydney, our lives changed so dramatically. Not only were we adding another mouth to feed to our little family, but then I was sick and that itself brought so many issues. I felt sick from jump. Not morning-sickness sick but tired, exhausted really, having to take naps ALL day. (Not so simple where you are raising a 2 year old boy and babysitting a 4 year old precocious girl). I would complain to my doctor every month that I was tiiiiiiiiiiired, more tired than should be humanly possible. No appetite, jaundiced, sickly looking, tiiiiiired and tiiiiiiiired. "You have a 2 year old boy, that's normal" they would say. It wasn't. Not normal at all.
I went for the big ultrasound in November, just before Thanksgiving if I remember correctly. It the the day we were going to see our Sydney. We *knew she was a girl, there was NEVER any other option in my mind. Sydney, I just needed to see Sydney. I remember lying on that table and the tech not saying much and when she did, it was like a bomb dropped. "You see this? This isn't supposed to be here, and your baby isn't moving. Go to the cafeteria and drink a Coke and come back at 1 and talk to the doctor". Panic! What? Something wrong with *my baby? That only happens to *other people. Not me. So we did as we were told. Awkward silence at the table at Tripler AMC. This can't be happening, this can't be happening.
We went back up to talk to the doctor. More ultrasound..."Hey! Your baby briefly opened the legs...its a girl!" See...Sydney, I told you. "Butttttttt, this dark line in her chest cavity isn't supposed to be here. You need to come back on Friday so we can check it again. And you're going to need an amniocentesis. I think your baby has a CMV infection. You're probably going to need to talk with the chaplain and make arrangements. 85% of kids born with CMV don't live til their first birthday and of that remaining 15%, 75% of those kids die by 5." Breath. "She's probably be born blind, deaf, CP, seizures, maybe Down's Syndrome, or Turner's Syndrome, it may not be all of those things but probably most of them. You'll probably have to have her early. Possibly by Christmas (even though she isn't due until the end of March) You should probably call your families. Thanks, see ya Friday" Wait what? This is the happiest day, I'm having a girl, and I get princess crowns and ballet and make up and boys and shopping, and you are telling me my baby is gonna die? What. The. FUCK?!?!
We drove back home, down H1 toward Mililani, and I tried to call my mom from the cell phone and couldn't do it. My sole job was to be a wife and a mom and I was failing. I called my sister, who is the best researcher in the world. "Donna, I need to know whats going to happen" and bless her heart, she looked. And looked. And looked. And nothing. Ever. Bits and pieces here and there. No one knew what I was talking about. No one thought anything of it.
And you know how this story ends (or continues...) Sydney was born in February 2001, came home after 10 days in the hospital. She's the perfect fit for our family. She's quiet and doesn't talk back (cause she's deaf), she doesn't get into her brother things too often (she has CP and doesn't walk), she sometimes spends time in the hospital to get away from her brothers (seizures and feeding issues), but I wouldn't have it any other way.
I said at the start of this blog, that my life came full circle today. I was combing the Sunday paper for coupons for Rachel today. I pulled out the Parade magazine, like I do every week. I flipped through, like every week. And I stopped. Because on page 15 was Janelle Greenlee...Health Hero. My story is her story. My life is her life. My Sydney is her baby. Read the article here! Janelle is the CEO of STOP CMV, an organization dedicated to preventing the CMV infection in pregnant women. You can find her website at STOP CMV. Finally. A place where I can find other moms and dads who have been or are being affected by CMV. I can find children who are like Sydney. I can find siblings like Nik and Timmy who have handicapped brothers and sisters. I can share my experience. I can reassure another scared mom that it will be ok. It won't be normal, but you'll learn to redefine normal.
Full circle...my heart is happy. Check out Janelle's website or Like her on Facebook or both. Support her. Support me. Support Sydney and the kids like her. And thanks for reading.