This is not really how I intended to announce, but that is how life goes sometimes. I thought about just erasing this draft and starting all over, but that felt fake too. So, here goes...
Day 0. Thursday. My appointment was scheduled for 4:45. I left work early to make it on time. There were three others in the waiting area with me. They were all called in, one by one. Minutes ticked by. I browsed magazines. I played sudoku on my phone. I messaged with my husband. Waiting, waiting. I only needed to see a phlebotomist, not the doctor. And yet, everyone else got called before me. 5:30. My doctor appeared in the doorway and said it would just be a moment longer, but I could come back and ask any questions I had. I wandered back in to one of the familiar rooms. Did I have questions? Yes, lots. But I was not sure how many of them were appropriate right then. So I asked the easy ones. I asked for numbers and was given a printout. I asked if we would be given an answer and was told "yes, with 99% accuracy." Most of the time I would take 99%. The doctor left. Waiting, waiting. The phlebotomist finally came in. I chose the other arm this time. Tight, tight, impossibly tight tourniquet. Two large vials of blood to collect. It was like she was trying to squeeze it out of me. "I want to get these as full as possible," she said. I only nodded, my hand was going numb. Finally, done. Band-aid. "We'll call you soon." Not soon enough.
Rewind.
Day -1. Wednesday. It was a good day. I do not remember the details now, it was a Wednesday, I was home with Beck all day. He had his first non-angry bath in a couple days. I had finally announced to the rest of our friends and family on Facebook that we were expecting. I had read Beck his story and was singing him his lullabies when the phone started ringing. I did not recognize the number and chose to ignore it to finish putting him to bed. I put Beck in his crib after his songs and sat quietly while he drifted off to sleep. Then I snuck into my bedroom to investigate the mystery call. There was a voicemail. I listened, I returned the call. The conversation that took place on the phone and immediately thereafter is detailed in a separate post (
here) so I will not repeat it all here. The short version is that the bloodwork from my NT scan on Monday had come back abnormal. The projected risk for our baby to have Down Syndrome was calculated at 1:68. I am choosing my words very carefully... projected risk. My numbers were put into a calculator and these are the odds we were given. It is a small chance, but still a chance. And it was something that made me feel very lost, confused, worried, upset. Sent me searching for answers, where there are none to be found. I cried myself to sleep that night and did not share my first definite recognition of a little being thumping in my belly with my husband.
Fast forward.
Day 1. Friday. I had my blood drawn the day before and was told that it would be 8-10 business days for the results. Results that I realize now would not *change* anything... but would at least provide an answer. We hoped. I had work that day, so was mostly able to stay distracted. But there were occasional google searches... "first trimester screen abnormal," "high hcg in pregnancy," "low papp-a in pregnancy," "nt scan and downs risk." Some info was comforting, some was terrifying. And so it goes with Dr. Google.
Saturday and Sunday passed in a blur. I worked on Saturday as well and mainly kept busy, but now I found myself looking at other kinds of websites. "Down Syndrome Pregnancy." "Life with Down Syndrome." "National Down Syndrome Society." I learned a lot. I quickly came to the realization that things were not as bleak as I had imagined. Most children born with Downs do experience some degree of developmental delay, but are perfectly normal kids. Many of them are able to attend regular schools (with the assistance of tutors) and even hold down jobs. And the one thing that I was constantly reading about is how their parents describe them as the happiest children they have ever known. But there were also physical defects to think about. Heart defects are the most common, often requiring one or multiple surgeries to repair. There is a higher chance of hearing issues. And a somewhat increased risk of developing leukemia. This was a lot to process. My husband was remaining quiet on the subject after our initial conversation. I assumed that he was not thinking about it, was waiting for the test results, was doing just fine in "hoping for the best."
Day 2. Monday. Back to the usual routine. Grocery shopping with Beck and mom. Working through nap time on my part-time-from-home job. Still the occasional googling. Now I scoured message boards on babycenter. "Down Syndrome Pregnancy." "Prenatal Testing." "Poor Prenatal Prognosis." There were so many stories similar to mine. So many woman waiting and wondering. Mostly just wanting to know. I was floundering. I asked myself questions that I did not want to consider. I did not want to be thinking about any of this! I just wanted to be enjoying my pregnancy. I wanted to be happy and excited! I felt like my life had been put on pause.
Finally, my husband and I spoke about it all. He asked me what was bothering me that evening after Beck was asleep and I just looked at him and exclaimed "How could you *not* know what is bothering me?" We discussed a lot of things that night. How scared I was, how worried I was about how having a special needs child would affect our family (immediate and extended). How I was not sure I could handle it all. Would we have real lives anymore? How would it affect Beckett? Surely this would change everything! "Yes," he said, "just like any new baby would." Would I be able to see past a genetic mistake and LOVE my child? That last one sounds so cruel... But I am a scientist. I know that Trisomys are a result of a fluke in cell division, a "mistake." My husband stopped me there. He knew where I was coming from, from the scientist perspective, but he was very firm in saying that this baby was no mistake. And I understand where HE is coming from there... we definitely wanted this child. Finally, the toughest questions of all. What would we do if the test came back positive? Did we still want this baby? Trisomy 21 is the best case scenario when it comes to Trisomys. Most people consider Trisomy 13 or 18 "incompatible with life." Lovely phrasing there. I do not believe that I am mentally or emotionally capable of carrying a baby to term only to have it be stillborn or to watch that baby die in my arms. Trisomy 21 though... that is a whole 'nother ballgame. Estimates vary as to how many pregnancies are terminated as a result of a T21 diagnosis. Anyway, my husband asked me what I would want to do and I answered quite honestly that I did not know. He took a moment, then looked at me very sincerely and said that this was our baby. A baby we wanted. A baby that will need love and care just like Beckett did. Just like our broken dog did. And we can handle it. We can handle anything. And yes, there were a heck of a lot more tears in there as well. But, somehow, just getting all these thoughts out; these scary, horrible, guilt-inducing thoughts, that no one should ever have to think about during their pregnancy, made me feel better. I even started to believe him. And I actually slept well that night.
Day 3. Tuesday. I somehow felt more at peace. No matter what happened, I knew I had my husband and that we really could deal with anything. I found joy in small things. There was still some worry, some "what ifs," and googling. But, mostly, I was okay. We went to bed early that night, but did not talk...
Day 4. Wednesday. One week later, for the first time since receiving The Phone Call, I felt little kicks from my baby. My baby.
Day 5. Thursday. A work day. A bit of an escape, but the petty problems seemed so trivial. Maybe that is a good thing. Perspective. I found myself wondering how we would tell our families and found myself considering making a video similar to the one we used to announce our first pregnancy. It is very strange the things you will find yourself thinking about.
Day 6. Friday. Back to work. Started posting on some of the babycenter boards just to help pass the time. It always helps to know that other have gone through the same thing or are currently going through it with you. I am not alone.
Saturday and Sunday, again passed in a blur. We had a rare Beck-free day on Saturday. Being the party animals that we are, we spent it cleaning and reorganizing the house. And we saw Despicable Me 2.
Day 7. Monday, again. I could not help but feel an impending sense of doom. Terrible truths, but we were reaching the point when the phone could ring at any moment and tell us news that would change our worlds. I felt a sense of peace at the same time, almost expecting it now. I really just needed to know. During the daily routine there are so many moments that pass, that just for a second you imagine how that moment will go when there are 2 kiddos instead of 1 present. I needed to be able to picture things. To have an idea of what was coming my way. Whatever it was, we would handle it, but I needed to KNOW. To prepare. To change my expectations.
Day 8. Tuesday. The day began at 4:30 am. Someday, these molars will be out and my first born will sleep again, until then we all suffer. I made some very unsatisfying decaf coffee and was in a wretched mood. Thankfully, a trip to the park in the morning made us both feel better. We came home, had a snack, and proceeded to take a much needed 2 and a half hour nap. Lovely. Then it was lunch, errands, playing outside some more. We were actually having a wonderful day afterall. At 4:15, the phone rang. It was a number I recognized. My first thought was "it's still offic hours, this could not be my doctor." It was not my doctor, it was one of the nurses. "Your Harmony bloodwork came back with the lowest possible risk." Oh what fantastic words those were! I asked a couple questions, but really had the information that I needed most of all. I waited until my husband was home to tell him the news. I would be lying if I did not admit that we were both hugely relieved. I felt like I could breathe again. Like I could stop trying to ignore the fact that I was pregnant. Like I no longer had to cringe whenever anyone asked about or mentioned my pregnancy. I did not know what to say! So I tried to not think about it at all. But now I knew. I finally knew. My baby had "typical chromosomes."
I have learned a lot over the course of the last 14 days. I think that I can handle a lot more than I give myself credit for. I have learned a lot more about Down Syndrome and what it means. I have learned that a lot of the assumptions that I had about Downs are simply not true. Sometime in the not so far off future, I hope to start volunteering some of my time in some way or another. There are several buddy groups that I came across. I think it would be great to get the kids exposed to kids who are different from them at a young age. There are still always plenty of things to worry about. You could spend your whole life worrying. I guess I will always have a small bit of worry until I am holding this new baby in my arms. I hope I am done worrying for awhile, I am looking forward to enjoying this pregnancy from here on out. But I definitely know that I will never look at another person with Down Syndrome in the same way.
