So Much More
INNERview with Adrienne Sullivan
YVONNE PIERRE: Adrienne, could you take a moment to introduce yourself to HYH readers?
ADRIENNE SULLIVAN: I’m 31 years young, living in Fort Worth, TX with my wonderful husband, two amazing kiddos, two crazy pugs, and the world’s greatest cat. Our life is chaotic and there seems to be dishes and laundry piling up, but we do our best to make time for the things that matter like family walks around the neighborhood, dinner with friends, and lazy Sunday mornings in our pajamas. I recently started a blog in an effort to chronicle our adventures and as a way to keep family and friends updated on our happenings – www.sullivanfamilyfun.blogspot.com.
YVONNE: Your daughter was diagnosed with Down syndrome. Could you share with us when she was diagnosed?
ADRIENNE: We found out when I was about 16 weeks pregnant that Brianne had Down syndrome. They saw a heart defect during a routine ultrasound, so when we were sent to a specialist, they informed us that there was a very good chance that she had Down syndrome (50% of individuals with DS have some sort of heart condition at birth). So, we opted to have the amniocentesis so we would know for certain – and the test results confirmed our daughter had an extra 21st chromosome, which equates to Down syndrome.
YVONNE: At the time, how much did you know about Down syndrome?
ADRIENNE: Before learning about Brianne’s “designer genes”, I did not have any idea what Ds really was. Sure, I had seen some people that had Ds, and knew that was what it was called, but beyond that I really had no clue what it meant. But we quickly became educated on the ins and outs of Down syndrome. The day that we got the results back, I went into research mode and even joined the local Down Syndrome Partnership. Through searching online, I found these amazing photomontages that were of kids that had Down syndrome and I was in awe by their beauty. Stunning photos set to beautiful music brought tears to my eyes (happy tears). These beautiful children were partaking in typical kid activities and they had huge smiles on their faces and it was clear these kids were loved.
YVONNE: When you received the results, what was your initial reaction?
ADRIENNE: I will never forget my phone ringing and the geneticist calling with the test results. In a cheerful, sing-songy voice she reported “Your results are showing a triple 21st chromosome which indicates Down syndrome”. I was floored. I thought, how could she report such earth shattering news with such a carefree and happy tone? I was at work, but I immediately grabbed my keys and purse and bolted out the door. I called my husband, Mark; as soon as I was clear of the building and repeated to him what the geneticist had reported, and said I’d see him at home. I drove home willing myself to just get there and to not think about it because I didn’t want to break down while driving. As soon as I got home, I collapsed to the living room floor and hugged my knees in to myself. It was hard to breathe; I couldn’t believe this was happening to me and I thought that my life was over. I sat on the floor in a daze, the pugs circling around me wondering why I wasn’t talking to them. I just waited for Mark to get home. He arrived with a bouquet of flowers and gave me a gigantic hug and in that instant I realized he wasn’t going to go running for the hills and that gave me hope. I realized right then that we were going to be okay and that we were going to love our little girl.
YVONNE: How has Brianne changed your outlook on life?
ADRIENNE: I think becoming a mom changes anyone’s outlook on life. I worry more. Corners of coffee tables are head knockers, cabinets are finger pinchers and speeding cars on the highway make me cringe with fear. Being a mom to a little one with special needs does likely magnify the worries, but also magnifies the joy – finding smiles in little things. Butterflies floating by or birds landing outside the window is something to look at in awe. Seeing Brianne learn new things, watching her reach and surpass milestones is one of my biggest thrills. Of course, I now have a much better understanding of what Down syndrome is. I think that has opened my eyes to really appreciate the challenges that individuals with Ds face and seeing them strive for greatness is such an inspiration.
YVONNE: What has been your greatest challenge with Brianne and how have you overcome it?
ADRIENNE: Since individuals with Down syndrome typically have very low muscle tone; it’s common that eating is a task that takes extra effort. The muscles used to swallow and chew food are weaker. This was the case with Brianne; it took tons of practice and tons of patience for her to learn to swallow the pureed baby foods. By trial and error, we finally learned that by thickening up the baby food, she was able to eat it. It seemed like forever that we were putting the food in her mouth and her tongue would thrust it right out. About the time we were going to call in extra therapists for help, Brianne started swallowing the food. It was at this time I realized it will be a constant battle of mastering one skill and hardly having time to celebrate the accomplishment before it’s time to jump in and work on the next task. While the therapists are always eager to move on to setting new goals, I realized I always want to be sure that we set aside time to relish in the new task she learns and to celebrate Brianne’s accomplishments.
YVONNE: You have two children -Brianne and Bryce – how far apart are they in age and what’s their relationship like?
ADRIENNE: Brianne is the big sister, by 14 months and 30 minutes. Currently, with Bryce at 15 months old, and Brianne almost 2 ½ years old, they can practically pass as twins. Bryce is already starting to fill the role of pseudo-big-brother. He’s running around; and Brianne is just starting to take a few steps on her own. They play really well together, most of the time! Sometimes there is hair pulling or sharing of toys is an issue, but they smile and giggle with each other and I hope they remain best of friends forever.
YVONNE: When you became pregnant with your son, Bryce were you concerned that he might have Down syndrome, too?
ADRIENNE: I was given the statistics that there was only a 1% chance that Bryce would have Down syndrome, but of course, I was concerned that we could indeed be that 1%. My husband and I talked it over and we both agreed that we wanted to have the early testing done so that we could ease our minds and not have that shadow of “what if” hanging over us. When the test results came back showing nothing out of the ordinary, it was refreshing to hear that we were not a high risk pregnancy.
YVONNE: For the expecting parent who just learned that their unborn baby has Down syndrome, what message of hope would you share with them?
ADRIENNE: I remember seeing the quote “more alike than different” on a flyer about Down syndrome after learning Brianne had DS. I vividly recall thinking that there was no way that was true. But I can honestly say now, I fully believe that is true.
Your baby has an extra chromosome, but that does not change the fact that it’s your baby and you will love that little one with all your heart. Your baby will be an adorable little bundle of joy that that needs diapers changed, that spits up all over you and that needs midnight feedings. Your baby will smile at you and you will melt. Your baby will learn to sit up and will learn to walk. You will take your baby to the park. Your baby will splash in the bathtub. Your baby will do all these things and SO much more!
For me, one of the most comforting things after getting the news that Brianne had DS was looking at pictures of babies and kids with Down syndrome, seeing how happy and ‘normal’ they looked. They were going on picnics with their families, reading bed time stories, covered in spaghetti at the dinner table and they were being loved by their parents and siblings. Your baby really will be ‘more alike than different’ and while there are differences and extra challenges, there is extra goodness that comes with that extra chromosome.
YVONNE: What is one thing you’d like to see improved for the future of children with Down syndrome?
ADRIENNE: I wish that more people were educated on what Down syndrome actually is. I understand that prenatal testing is coming fast and furious and that people will soon be finding out very early on if their unborn child has Down syndrome. I am 100% on board with this testing – with the caveat that accurate, up-to-date information MUST be provided to people when they are given the results. It is my biggest fear that people will get the diagnosis and that they will not know what Down syndrome really is.
I hope as Brianne gets older that people will be accepting of her and will have an understanding of what Down syndrome is and realize that she truly is ‘more alike than different’.
ADRIENNE: Happy Down syndrome Awareness Month! Take time to celebrate these amazing individuals that are born with a little extra goodness!