Some have asked... some know.... some don't... some have wondered.... here's our story.
Lincoln would be his name...
I remember so clearly, doing the early screening for Downs... because I was considered 'advanced maternal age'. I was 34, but would be a month into 35 by the time he was due.... I remember sitting in the Genetics Counselor's office... watching her map out our family... using shapes, circles - squares - triangles... and drawing them to perfection... with some stupid little tool... and she was nice, don't get me wrong... but I sat there thinking... I. don't. need. this. Just give me the test, the results and let's move on.
I remember going in for the blood draw, and being a little nervous about it... the thought of having a baby with a disability scared me. But I've ALWAYS been one of those who thinks, "it'll never happen to me." Nah. What am I so stressed about, waiting for these results?
I remember sitting at work, knowing that I was getting the call at work, with the results -- and I seriously contemplated taking the day off... just to guard myself. But totally reconsidered that morning... knowing 'we'd be fine.' The genetics counselor called, introduced herself to me and where she was calling from... and the next thing I heard was 'positive'. and '1 in 262' .... what ??? what did you just say? Positive? yeah. that is correct. Positive. I thanked her. Hung up and couldn't even begin to hold back the tears. I went and told my supervisor that I needed to go home. And left. Everyone knew we were expecting the results. And everyone knew they weren't the ones we expected.
Brandon and my dad were both -- 1 in 262?? PPSsssshhhhh! That's like less than a 1% chance. I remember my dad saying, "I have a better chance of growing all my hair back.".... and the rest of the next few days were just a blur.
I remember the conversations prior to the results, with the counselor, about all the false positives, and the only true way to know was through an amnio, which I wasn't willing to do. I just told myself, you know -- it was probably a false positive... and it'll never happen to me...
We went to our 18 week ultrasound... and you know, I'm SO naive. With our first baby -- literally -- the only thing we were there for, was to find out if she was a boy or girl. Everything else... what do you mean, everything else is ok? What else were you looking at? The only reason we were here was to know if we needed pink or blue clothing. Oiy. So we go in for our 2nd baby's ultrasound....and we know, there's going to be further scrutiny. We know, they're going to be 'looking'. To see if they can find anything pointing towards - yep, he has Downs.
We walked out with, everything looked 'normal' and it's a boy! We both were relieved. Normal. No indicators pointing towards a confirmed DS diagnosis. Whew. At that point, and for the next 20ish weeks... we swallowed our fears and presumed we were in the 'false positive' results.
Fast forward... contractions... come in to the hospital... monitoring.... labor stopped by next morning. Induction. For anyone that hasn't had a baby - or experience with induction, it's not a quick process... I was checked, checked, and rechecked. As I was progressing, we were told it would still probably be a while -- if Brandon wanted to get something to eat, now was probably the best time to do it.... he called, ordered a pizza... I called the nurse back in and said, you better check me again... I think it's time. She said, well, I'll check you, but I don't think ... OH. Yes, it is... on your next contraction, we'll start pushing.... *2 or 3 more nurses filed in... and in literally minutes, Lincoln was born.
We were taking pictures, he was perfect, we were so happy.... and oh, Brandon ordered that pizza... after getting baby Lincoln weighed and a few more pictures, he went to get his pizza.
While he was gone, more doctors, nurses, doctors, more nurses.... kept coming in, looking at my baby... I said -- what? Is everything ok? Oh, yeah -- we're just checking him out, he was born really quickly and his Apgar scores are a little low. More doctors... more in and out. No. This is not normal. I've had a baby already... something was not right. I said, "Mary (our midwife), what? Please tell me. What are they all looking at?" She came over and sat on the edge of my birthing bed, and said, "Michelle, we suspect he may have Down Syndrome."
WHAT? Everything was in slow motion. I don't think I asked another question. I just sat there. And cried.
Brandon came back with his pizza... walked in -- and all I could say was, "They think Lincoln has Down Syndrome." And Brandon's response, "Well, that sucks."
The doctors came in, there was a Cardiologist, a Geneticist, all kinds of residents, nurses, our midwife... they were going to do some further tests and exams... they took him. The doctor came back and said they were going to do a blood test that would identify the marker for Downs, a 3rd copy of Chromosome 21. And I remember Brandon asking him if they were just doing it as a formality, and the doctor said yes. They were pretty certain he had Downs.
I remember when they moved us from the birthing room and took us to the postpartum floor, and placed my new baby on my lap, and I cried.... the whole way to the new room. I remember having a conversation with our midwife, who knew we planned on 3 kids... that we were done. I didn't think it was a good idea to have anymore. And she said... "Michelle, don't make your decision yet. Give yourself time to figure out this new journey." And with that, she handed me the poem, "Welcome to Holland" by Emily Perl Kingsley.
When we were in the hospital, we had to stay a little longer, Lincoln needed oxygen and he was being fed through a tube in his nose. He wouldn't latch and wasn't 'organized' as they called it, in the Level 2 Nursery, to coordinate his 'suck, swallow, breathe' pattern. I ended up experiencing some abdominal pain about 2 days after he was born, and by day 3, I seriously was doubling over.... it hurt so bad... and it would come in waves of cramping. I had an uterine infection. Really? As if coping with everything else, now I'm getting re-admitted to the hospital and being put on an I.V. with antibiotics that were so strong, they made my mouth taste metallic. I remember laying in bed, sleeping as much as I could and rocking back and forth when I was awake... because it hurt so much. The nurses would come in and check on me and all I could say was, Yeah, I'm ok. While I was thinking GET OUT!!! *when I'm sick, I like to be left alone.
Finally, I got better, was released and was able to go back to the Level 2 nursery and touch my baby's arm through his little enclosed bassinet.
I remember finally getting to go home... with the horrendous mountain of papers, books, pamphlets, phone numbers and instructions on what to do if he stops breathing and turns blue. O. M. G. are you kidding me?
The Community Health Nurse came over to our house probably about a week after we were home... to make sure we were doing ok. She came in, sat down at my kitchen table and everything was going fine, until she started telling me that my baby would probably never drive, never have a real job, never .... never....
WHAT? I stood up, Lincoln was in the other room, in his bassinet, and I remember standing up and looking at her dead in the eye, and said, HOW DARE YOU ?!? which was followed with get the f(*k out of my house. *I was still very hormonal, but seriously?!? We're going to have this conversation of all the things you don't think he'll be able to do? Who the hell are you!??! I don't think she was even turned around in our street to leave, and I was calling her supervisor... I won't repeat the conversation she listened to, but I was thankful she was silent and just listened. And then the apologies started. No. I don't need an apology. Just make sure it doesn't ever happen again, to any other new mother.
I remember coming home with so many more papers of informative pamphlets to read 'when you're ready.' Starting to read it and putting it down, because I couldn't read two sentences without crying.
I was grieving. And I grieved for probably the next 4-6 months. I couldn't talk about it. I went from sad, to angry, to sad, to ok, to ANGRY, to sad.... and it took a LONG time before I wouldn't cry when I talked about him... a long time....
On his first birthday, I made him a book -- which ended with, "And I promise... I will never cry again, on your birthday. Only happy tears."