Tuesday, March 17, 2009

Quinn's Story

For St. Patrick's Day, in Quinn's honor I would like to tell her story. This is a story I wrote about the pregnancy and her first two months of her life (it was written December 2007)...

I wanted to experience a pregnancy one last time – go through all the events and think of it as my last hurrah when it comes to having a baby. It would be my final time. I already had two little boys, Riley and Aidan, and was ready to have our third and final baby to complete our family. However, this time was not so easy. I had two miscarriages before I became pregnant with Quinn. I never experienced this before. During both miscarriages, they could not see the heart beat on the 8th week – so I became obsessed with the heart – please lord let there be a heartbeat, and thankfully with Quinn there clearly was. I was so happy that I didn’t give up and that I persevered to have my perfect little one. This time everything would work out and I will get to experience things one last time like I planned.

We called the baby Quinn from Day 1 – boy or girl, this would be the name, my little Quinn. Things were going along as they should with the pregnancy and then WHAM – first problem, my husband was laid off of his job at the end of April. No problem, I work two jobs, it will be more stress, but we will survive. Then the exciting day for the ultrasound came, June 11, 2007. I was focused on knowing that the heart was ok (miscarriage one and two made me obsessed with the heart), and finding out if Quinn was a boy or girl. I wasn’t really focused on much else. I really didn’t take the meeting with the genetic counselor seriously; it was just formality because I was 35 years-old. Nothing that big ever happens to me anyway. The ultrasound was going fine – heart looks great, it is a girl!!!! Then WHAM – “we see some mild ventricularomegaly,” “might not be anything,” “would recommend an amnio.” I went ahead with the amnio, nothing that big ever happens to me anyway, so what would it hurt? The next day a telephone call wakes me up from a nap. The genetic counselor says “I’m sorry to tell you that the baby has Trisomy 21.” The FISH results came back and I guess everyone, including Quinn, didn’t realize that nothing that big ever happens to me. I felt so stupid, here I was focusing on the heart when there is so much more to worry about – how could I be so foolish?

As is the story of my life, I didn’t have time to deal with this. I had to go to my second job. I had to help people deal with their problems. I didn’t have time for problems of my own, didn’t everyone realize this? Didn’t Quinn realize this? Didn’t my husband’s boss realize this when he laid him off? Come on now everyone, you aren’t giving me any break here. Later that week we went on vacation; it was already scheduled. We had to go, get on with the normalcy of our lives. There were emotional moments on that trip, but there was also a moment of clarity. We met our first person named Quinn, a tour guide on our sightseeing expedition. I was so excited to actually meet someone with the name! Then at the same place, we stumbled upon an adult woman with Down syndrome. She was there sightseeing on her own. She looked independent. I almost felt like a stalker as I watched her. Would Quinn be like this? But she wasn’t that stylish. You see, I have this image from my high school days in my mind. 1980s photos of people with Down syndrome. Students in my high school with Down syndrome. The clothes, the glasses, the haircut. It sounds bad, but that was etched in my mind. I remember learning about Down syndrome in high school. I remember thinking how sad to have a child like that, as my teacher was lecturing about the topic. Fast forward in time…that’s karma, and now it is me. I can’t believe this.

The best thing about a prenatal diagnosis is that you have time to educate yourself without having a baby demanding attention. So I began educating myself. Attending trainings on developmental disabilities. Reading books – eventually learning stay away from the medical what ifs and just sticking to the positive stories. Meeting families – oh can I say lovely families with beautiful, beautiful children. My boys were so taken with these kids and would talk about them, such things as “that guy was really active” “that girl was so cute.” I started to think that maybe things would be ok after all. My moment of clarity was when I was holding my then three-year-old, Aidan, something that didn’t happen all that often – he is so “on the move.” He fell asleep in my arms. I was looking at him and then it hit me, I would love him no matter what. That is the same for Quinn. Day by day things started to get a little better.

As for the pregnancy, things progressed. Appointment after appointment – specialist after specialist – hey this wasn’t at all like my other two, wasn’t that the point – my last hurrah and now everything is so different. But the perinatologist was positive. He wasn’t the most empathetic person in the world, but as these appointments progressed, I could see a change in him – an excitement. He would talk about how great that it is that Quinn doesn’t have any birth defects, how great it is that she is growing all so so big, how great it is that there are no markers (the mild ventricularomegaly went away!). He would actually look excited. My ob/gyn was excited and supportive. Maybe things would be ok after all.

Then we moved to having to do the non-stress tests and biophysical profiles. Hey, this wasn’t like my other two pregnancies, where is my last hurrah? These tests are making me stressed. The final week (Week 35) I had a breakdown when I failed a biophysical profile and had to do a non-stress test and had to cancel my lunch plans – a lunch I was looking forward to as I was still working nonstop supporting my family. I started crying in front of the nurse. She said, “Oh your baby will be ok.” I told her I KNOW Quinn will be fine, I, myself, am who I am worried about. That started my next mantra, Quinn would be ok, and I just know it.

Well that little girl came on this earth shaking my life up, as she has done since her conception. On the first day of the 36th Week I did not feel her move. The doctor made it clear that I should go in when that happens, so it being a Saturday, I paged the doctor on call. She told me to come in to the hospital to get checked out. I told my husband and two sons not to worry because I would only be a little while and drove myself to the hospital. Nothing that big ever happens to me anyway. Remember that, I foolishly still believed it. I got checked out, things looked fine, only that I had to do a non-stress test (yippee given my breakdown a few days earlier) and then I could go home. I called my husband to say I would be home by 10pm. I was all set up for the test and laying there by myself when my water broke. Oh that girl – won’t she give me a break – doesn’t she know that things like this don’t happen to me? She is more difficult than the boys after all. What is up with that? Then there is more, she is breech and now my third pregnancy, the one I want to have to experience things ONE LAST TIME means that FOR THE FIRST TIME I have to have a C-Section!!!!! A flurry of calls, activity, and then she is born 10:34 pm on October 20th – four weeks early, 7 pounds 9 ounces 18.5 inches long and COMPLETELY HEALTHY. Her mother on the other hand, was stressed and dazed. A few days after delivering her, Quinn struck again – now mommy had Bell ’s palsy. Nothing with this pregnancy was as expected. I can’t assume nothing ever happens to me anymore!

Fast forward in time, Quinn is now over two months old. Just looking at her, this calm comes over me. She will be fine. I know it. And this I KNOW is not some foolish assumption about my life like the “nothing like that ever happens to me” idea. Quinn is something – she is not what I expected, but she is what I needed. You see I know she will teach me all sorts of things. I am already learning. You can’t assume anything. People told us our first few weeks with her would be hectic – all the appointments. We had none, she had no health problems. We only had the well baby check-ups. People told us about the low muscle tone. Her muscle tone isn’t that low. But now her daddy’s unemployment is seen as a blessing, as he works with her daily on her physical therapy. Quinn is always reminding me that you never really know how things will go – that is her biggest lesson to me. She tells me that we just have to be able to adapt to what happens.
Quinn is always telling me that things will be ok. Her first smile was at her baptism at 8 weeks old. She was just baptized and we returned to our seats to sing the hymn “I was There for Your Borning Cry.”I was looking at her thinking about what her future might hold and she SMILED. She will be ok. She just tells me that. She started sleeping through the night at 8 weeks old too – just like her brothers. She will be ok. She watches her brothers wrestle around on the floor, before you know it she will be in the mix. I just know it.

I have moments still. Like when I saw a mother and her adult daughter with Down syndrome at the grocery store. Fears swept in. Fears taking me back to my assumptions about Down syndrome that I made in high school. What it must be like to have a child with Down syndrome, the clothes, the haircut, the glasses, just like those 1980s photos in my high school textbook and those students in special education at my school. But I am getting better at coping with these fears. Quinn just shows me that she is unique. I can’t assume anything except that she will be ok – this I KNOW. I owe so much to my girl Quinn. She is mighty, strong, miraculous, and wise. She is exactly what I needed in my life, even though I didn’t recognize it at the time.

1 comment:

  1. Thanks for sharing Quinn's story. Sophie's baptism had the same hymn and I still can't get through it without tears of happiness. Quinn and Soph WILL be ok. They will be great.