I wrote this post almost two and a half years ago but never published it. I have recently decided to return to blogging about our family life again so here it is. Better late than never, right?
We had been trying and hoping to add baby number 3 for a while when we found out we were pregnant. We were completely ecstatic! I had an oddly normal pregnancy. With Spiderman and Princess Unicorn I had really rough morning sickness that lasted the whole 9 months. Well, technically I had month 7 off of morning sickness with Spiderman but it came back with a vengeance month 8. This time around it was much more manageable. I was able to function pretty normally and chalked it up to the fact I was going to Zumba 3 times a week and much more active than during my last two pregnancies, but I couldn't get rid of the fear in the back of my mind that something was different with this baby.
We had to wait until 22 1/2 weeks for our gender ultrasound. Really? I was going crazy wanting to know if the little tyke would be a boy or a girl. The week of the appointment was absolutely insane. The Tuesday of that week we had an EEG for sweet Princess Unicorn, Wednesday was the ultrasound, followed by the Thursday check up with the OB and then Friday was a ward dinner Cory and I were in charge of. Due to the ward dinner, we spent the week prepping different foods at our home pretty much every day and having people over to help with the food prep along with passing out fliers, collecting decorations, and organizing everything else for the dinner. Those who know our little Spiderman know that he is a very energetic little guy. He is one of the sweetest and kindest kids I know but really struggles with sitting still and focusing. Just before the week began we were informed that primary, his church class, was going poorly with him and had a meeting to try and figure out how to help him more. It was a crazy week. I kept thinking, "Princess Unicorn has what we think are Absence Seizures, Spiderman has energy and focusing problems at church, I just hope and pray everything is okay with the baby."
The day of the ultrasound came and it was amazing. I love ultrasounds. It is so fun to see the little one growing inside of me. :) I remember she took a really long time examining the little one's head. We switched to a new office so I thought that she was probably just a lot more detailed than our past ultrasound offices and enjoyed seeing the little one. She wasn't a really talkative person, so a lot of the time I wasn't sure what she was looking at. Then she said we were going to see the arms and she couldn't find one of them. I don't mean a, hmmm.. where is the arm? There it is! I mean a full on 5 minutes of her looking for the baby's arm. I was seriously wondering if there was one! She eventually found it tucked behind the baby's back and moved on. She went through the rest of the ultrasound and after convincing the little one to change positions we discovered that we were expecting a boy. I was so happy. Spiderman and Princess Unicorn are going to have a baby brother! I absolutely loved the boy name we picked out and was thrilled that we would get to use it. Everything was great! We headed home to share the good news with the cute little pictures she printed out for us in hand and I just kept praying and thanking Heavenly Father that we had a healthy and strong little boy.
The doctor appointment went great, then came the Friday dinner. CRAZY!!!! I had about 35 minutes that entire day where I was not working on something for the dinner. It was a long, intense evening. M, our exchange student from Japan, was amazing and watched the kids for me in the afternoon so I could be at the church helping set up. I kept thinking, "Princess Unicorn's EEG is done so we just have to wait for the results, we are trying essential oils with Spiderman and they are working great at helping him focus and be calmer, the baby is healthy and strong and this dinner will be done tonight and I can relax again!"
Then I got the phone call. I was busy grabbing a few things at home to run to the dinner when the phone rang. I saw it was my OBGYN's office. I have never gotten a call from them other than appointment reminders so I knew this was probably important. When I answered and heard the doctor's voice as opposed to a nurse, I knew something was going on. He said a bunch of things along the lines of "these things typically turn out fine" and "don't worry about them" before he got to the point. They had found a few abnormalities during the ultrasound. The baby's right kidney is dilated. "Okay," I thought, "I have heard of that before. I know that it is more common in boys, generally fixes itself before birth and mostly just means an increased risk of Down syndrome." I wrote it down on the nearest paper I could find and he went on. Babies have fluid compartments in their brains and our baby had one that is larger than the other. That wasn't something I had heard of and didn't even have time to process it as I wrote it down and he continued. My placenta is too low so to be careful with what I do and watch for bleeding and we would have an ultrasound in two months with a specialist in Provo to get more information on the baby and then he hung up. I finished writing and ran to continue setting up for the dinner and gave Cory a quick call to update him on what the doctor said.
I was working with the other committee members hanging snowflakes at church when it hit me--something may be wrong with the baby's brain. The kidney is one thing, fairly common, normally fixes itself, not too much to worry about. The brain? I felt so lost and confused. I wanted to run home and jump on Google and find out what in the world it meant. I couldn't believe I didn't ask the doctor more questions! I just wrote it down and kept going on. So much was happening in my mind. I was trying so hard to keep on task with this dinner and ended up locking myself in the church library so I could text my best friend that they had found abnormalities and get some kind of support. She offered to google for me but I told her that one of them was with the brain and so I was worried about what she would find and didn't want to be bawling while trying to serve dinner to 100 adults from my ward. She was kind and supportive and seemed to know just what to say to get me to calm down and not burst into tears and I was able to get back to work and pretend everything was fine. The dinner went well. It was a crazy night but I had an amazing committee (and chef/husband/co-chair) and everything came together. Then I went home and the internet searching began.
I mostly focused on the brain issue, which I learned was called Unilateral Ventriculomegaly. As long as the fluid compartment is not above a certain range, the babies tend to turn out normal, as long as there is not a chromosome abnormality (the most common of which is Down syndrome). They mention a lot that if this is the only abnormality, then the babies are almost always fine, but that the risk is greatly increased if another abnormality is present pointing towards a chromosome issue (hmm... like a dilated kidney?). From the many articles I read on both issues, it seemed our chance for this cute little guy having Down syndrome was somewhere between 1:10 and 1:3, depending on the study and website I found.
I should comment here that I absolutely love children with Down syndrome. I was blessed to spend many, many hours volunteering and working at a special needs school and I really enjoyed the children I was able to serve. I also was able to work with children for 4 summers at a Family Camp where I would sometimes have a child up for the week who had special needs. I was always excited when I was told there would be a child with Down syndrome in my class. Those kids were always fun and spunky little ones (I worked with kids 3-5 years old and under depending on the year) and I loved having them in my class and getting to know them. One of my favorite kids I have ever met I was able to have in my class for the whole summer because she lived at the camp with her family. I loved spending so much time with her! I remember deciding that when I was "grown up" I wanted to adopt a child with Down syndrome.
Fast forward to the present time again. As I was doing all of this reading on Google I felt relieved. This little guy will either be normal or have Down syndrome. I can handle that. I can do that. Then the unknown started to set in. This was a really hard time for me. I didn't cry about it. Every experience I have had with children who have Down syndrome has taught me that these are extremely special children and I wasn't upset or angry that there is such a high chance our little guy has it. I think I was feeling more lost. The work I have done has involved children ages 3 to young adult. I have zero experience with Down syndrome infants. What do I expect? How do I care for the baby? Will he be like my other babies? What special help will he need? How will other people treat him? Will other people stare at him a lot? Will he be treated differently? Will people be constantly telling me they are sorry or they wish we didn't have to deal with this? Or perhaps, that they wish he was "normal?" The more I thought about it these concerns ate at me. Especially the concerns over how he would be treated. I loved him already and was looking towards this experience with as much optimism as I could muster but the fear of what others would say about my little boy and the way he would be treated were driving me crazy!
One interesting moment I had was the first time I formally prayed with my family after the phone call. I think it was probably breakfast with my kids the next day. I always include the new baby in the prayers I say, particularly that the baby will be healthy and strong. This time I paused. I have no idea how long I paused in real time but if felt like a while to me. I thought, "Do I keep praying for this when we know something may well be wrong with the baby?" Then I thought, "You prayed that the baby is healthy and strong. That is what has always mattered to you, what you have always wanted. What have you been told? Is the baby strong? Yes. Is the baby healthy? Yes. These abnormalities may affect the baby's cognitive function and/or chromosome count, but the baby is healthy and strong." I felt relieved and blessed and continued with the prayer, thanking Heavenly Father for the baby being healthy and strong and asking that the baby continue to remain healthy and strong.
I didn't tell anyone, other than the best friend I had already texted and Cory, that anything was going on with the baby. I didn't want negativity entering in when I was fighting to stay positive. Mostly I was going absolutely insane not knowing. When we opted out of prenatal genetic testing my thought was, I would be fine finding out our little one has Down syndrome or another genetic problem at birth. It never occurred to me that we could receive abnormal ultrasounds and spend the rest of the pregnancy not knowing. I kept thinking, I am fine either way but I have to know! I am a huge preparer and not knowing what to prepare for was infuriating. After two weeks, I couldn't do it anymore. I was breaking down into tears constantly (not because of the possible diagnoses, but because of the stress of not knowing), avoiding people and spending every moment my kids were asleep googling the abnormalities again and again as if the right website would pop up saying, Ashley, your child does/does not have Down syndrome.
After breaking down to my best friend one day, I am pretty sure her prayers on my behalf were answered. I had the thought that I should research how to deal with uncertainty. I read a mostly unhelpful article which had one amazing, "Duh!" moment for me. The author said when she did not know where her family would be moving and would not find out until just before the move, she planned for both places. That way she was set with either one. It took more time to make two plans but was worth it in the end because they were totally prepared for each outcome. DUH!!!!! Why on earth did I not think of that!? I felt free! I would make a plan for if the little guy comes with a regular number of chromosomes and a plan for if he comes with Down syndrome. Either way, we would be prepared.
I researched everything I could find on Down Syndrome infants and newborns and was surprised how hard it is to find information. It took a while but I started to find the resources I was looking for. I learned that they have poor muscle tone. My infant carrier, which I loved with my other two kids, would not work for this little guy. I researched which one to buy if he has Down syndrome. I read all about the breastfeeding problems they can have due to the low muscle tone and different things to try. I already had a shopping list of things we still need for baby boy but I made a second list of things to add if he has Down syndrome. I started to feel so much less stressed and life continued to go on.
One thing continued to bother me. Whenever I thought of the baby, I thought about whether the baby has Down syndrome or not. Will he be "normal" or not? I was having the hardest time thinking of my baby in any other way. As I read birth stories of Down syndrome infants I saw that many of them commented on how when they looked at their baby, they saw a diagnosis, not a newborn. I realized that was exactly what I was doing when I thought of my baby. I was thinking,"Does he have this diagnosis or not?" I wasn't sure how to stop doing it but it was really bothering me. A friend of mine has a baby boy who is 4 months old and I got to hold him the other day. I loved holding him but the whole time I kept thinking, will my son be like this or will I have to hold him differently because of poor muscle tone? Will he look like this or will his nose and eyes be shaped different? Will he be able to hold his head up? I wanted to stop focusing on these issues and just see the little baby growing inside me as my baby again but I had no idea how.
As I was looking for a good blog to help me know how a Down syndrome baby would be different from a regular baby, I found this amazing site, http://theamazingellagrace.blogspot.com This mother has written since her daughter Ella's birth and she is now in 1st grade. I was able to read all about what she was like for her first years and it was amazing. While I was able to see the differences, I was able to see something even more precious, her little personality, her traits that were so much like her brother's, her smiles and throwing fits, her very normal baby side. I loved reading about how even though she has Down syndrome and is delayed in some areas, she is a normal baby with good days and bad days and a love for water like her brother and food she does and does not like. It showed me that while my little boy might be different, he will still be my little boy.
My funk was over. I saw the blue sky again and realized that I could again see my little one as my new baby, Spiderman and Princess Unicorn's little brother, my sweet newborn and that it truly does not matter if he has Down syndrome or not. At least not to me--not anymore. He will be a cutie with blue eyes (genetically they shouldn't be any other color), he will probably have lots of hair like my other two, his first words will be in ASL just as all my kids' were, since I start teaching it to them at birth. He will love his siblings and they will love him. I had my little boy back. While I am curious as to what the next ultrasound will tell us and if they will find more markers for Down syndrome or not, I find myself finally at peace and ready to meet my little boy (in 3 months when he is due) and excited to embrace life with him as a part of it.
(As time went on a shared what was going on with a few more people and was so blessed and thankful for their love and support. Our follow up appointments over the next few months showed both his brain and kidney issues resolving before birth and it turns out he does not have Down syndrome. He will be known to the internet world as Little Einstein)
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