T21

This is longish...and does mention termination...reader beware...

It took us a few months to get pregnant with Baby Raptor. Not long in the scheme of things (our hearts go out to friends and family who have had or are trying for much longer than that), but it did take a few months and it was disheartening to see negative pregnancy tests or to realize that the previous month had been unsuccessful. As we were trying in the third month, I remember really turning this over to God. It is something Matt and I have been trying to do for a year and a half now, turning things over to God and recognizing His sovereignty in our lives. So I prayed that God would work His will in our lives and that He was fully aware of what we wanted, but for His work to be done through us. How was I to know that He was working on us in such a larger way than we could have ever expected?

We were ecstatic to see the positive test. I think we cherished that secret for even longer than we did with the girls, it was so nice to know we had another little one coming our way. I love being pregnant and knowing that my body is performing an absolute miracle is amazing to me. I love being a part of something that is so much larger than I can control. In a way, I feel "chosen", chosen to be a vessel that nourishes and cares for a little life who is sacred. And my body has always worked for me before, so there were absolutely no thoughts otherwise in my mind.

I did have a very odd pregnancy dream early on that threw me off. Take dreams for what you will, but I find it interesting to think about this dream in relation to what we know now. I dreamt that I gave birth to a beautiful baby girl who I could not have been prouder of that was then promptly replaced by a baby rabbit. I was mad, I was reeling from my loss, I was in practical hysterics. My nurses and doctor assured me that everything was going to be ok, that this wasn't common, but sometimes these things did happen. I angrily told everyone that I didn't WANT this, that I wanted my other baby back. The dream touched me so much that I asked my doctor to promise me that I wasn't going to give birth to a rabbit. She assured me that it wouldn't be the case. When I told Matt about it, he offhandedly suggested that maybe it meant the baby would be born with special needs. We both shook our heads at the thought...of course that isn't it...that wouldn't happen to us.

If you have read previous posts, you know what we went through from weeks 12-20 in waiting for our diagnosis. There were definite moments of "Why me" as if we were being punished. There were definite times that Matt and myself would compartmentalize and knew we couldn't fix or do anything about it so we shrugged it away. There were times when I went back to God and told Him that we were turning this over to Him even though part of me knew that, given the chance, I would jump in and hand mold this child to my liking, to my wants, and to my idea of perfection.

I cried at the research done that showed how many people, in our situation, make the choice to end the lives of their baby. Research suggests that, of the children (like our Raptor) who have been prenatally diagnosed with Trisomy 21, somewhere between 70-90% are terminated. The figures from what I can tell are actually closer to the 90%, but even 70% is outrageously high. I find it interesting that as I walked the Carenet Walk for Life this year, I knew I was pregnant. I almost made shirts for the girls that said "I am life" and one for myself that, at my belly, also said "I am life". My baby was alive! Even at 12 weeks, he or she was moving, responding, and looked like a human baby. And as devastated as we were to find out that T21 was even a possibility, we knew that this wasn't a mistake. We knew that he or she was not merely a "clump of cells". We knew that he or she could make contributions to society. We knew that he or she was not just something that needed to be taken care of. What scares Matt and I even more is the idea that this 90% could get even higher. Tests are out now that can diagnose T13, T18, T21, and a few gender related Chromosomal disorders with a simple blood draw. This means no invasive testing and it means earlier results. More and more women and men could glean the knowledge that their child has different genes at an earlier gestational age and could (and will) make decisions based on that. Furthermore, insurance companies have now started covering some of this testing under the label of "preventative testing". The only way to prevent these chromosomal disorders is to (a) not get pregnant in the first place or (b) terminate the child once the disorder is detected.

What if we just left these children alone? What a difference that might show in the makeup of our society. Imagine if these children were left to continue to grow in their mother's womb and either raised by their own parents or given to the couples that are on a waiting list to adopt children specifically with Down syndrome. If these children were given time to grow, how many would be in our elementary schools? Research has shown that at least 1,000 children prenatally diagnosed with T21 are terminated in England each year. The figures and data are more difficult to get here in the USA because of a number of reasons, but trends suggest that at least that many are terminated here as well. What astounds me even more is the fact that Down syndrome of 20 years ago is not the same Down syndrome of today. More and more kids with Down syndrome are being mainstreamed in the regular education classroom, more and more kids are learning to drive, going off to college, living on their own, and getting married (God I hope Raptor falls in love and gets married...I want to dance with my husband at each of my kid's weddings). Early intervention is showing that kids with Down syndrome aren't necessarily mentally retarded, many times it is a matter of learning delays or learning differently. Why then are these children being terminated? We did the testing so we would "know" if there were any issues that we needed to be prepared for, we have since learned that, at least with T21, there is no testing that can be done prenatally that will tell us that much about our child. Even though we know Raptor has an extra chromosome, that tells us very little about who he or she is and what he or she will be capable of. Why won't others realize this too?

Matt and I were discussing last night after watching this video about the termination "issue". We are sure that, at some point, we will be asked if we ever considered abortion. The easiest answer is "No, we never considered abortion". But the real answer is more complicated that that. When you are faced with something that seems like such a struggle, when you are faced with something that seems larger than you can handle, when you are faced with something that you did not want, you look for solutions. You look for a way to fix it. You look for a way to get around it. And, as discussed, the only "fix" is termination. And we realized that, so termination did cross our minds, but it was never, ever a consideration or possibility. It was a "fix" that we knew had such horrible repercussions that we would never give it room in our minds and in our hearts for more than a fleeting second or two. And, it was such a fleeting thought, we never had to discuss it with one another, we knew we would keep this child no matter what.

The video did bring up a lot of feelings we had though. The idea about Why us? The idea that this sort of thing wasn't supposed to happen to people like us. The idea that we were somehow better or more perfect than this diagnosis. But Matt and I have shifted our thoughts. Before we asked "Why us?" and now we are asking "For what purpose us?". We want to know why this baby has been placed with us and what we are supposed to do with him or her in an entirely new way. As the day we meet him or her rapidly approaches, we are excited and nervous for the moment. It has been a long journey and we have already grown so much in the past 22 weeks. We know that this child has so much to teach all of us and hope we can do him or her justice.