When I was pregnant with our Lumina we decided to not have extra testing (as we had done so with our other children). However, at about 11 weeks pregnant as a family we went to Macy's for a holiday dinner with family and while walking through I saw a father with his child who had Down syndrome. Something in the depths of me told me that the child I was pregnant with would have something unique. At the 13 week ultrasound the technician told me that the fluid around Lumina's neck was a bit thick (I went home to find out that that was a soft marker for Down syndrome) and asked repeatedly if I wanted further testing to which I replied "no". The pregnancy progressed as all pregnancies, not like any other, except my whole body went crazy on me with this one. Most pregnancies with a child who has Down syndrome are perfectly peaceful so my body going all crazy wasn't a red flag that something was up. After the 20 week ultrasound when we found out our child was a girl we spent the rest of the pregnancy debating names, going between Lucy and Lumina until finally settling on Lumina (which means pure light). She was born on the first day of summer, the longest day of light. As soon as she was handed to me, I knew she had Down syndrome but asked the nurse to ask the pediatrician about testing.
The next day Lumina was taken to have an echocardiogram of her heart where they found she had three defects that would require surgery. I wasn't upset about the Down syndrome but I cried my eyes out about the need for open heart surgery within six months and, after researching, the possibilities down the road of leukemia. However, there was one thing I did not need to worry about that the pediatrician brought up, and that is Celiac Disease, because our family already ate gluten free due to how gluten affects our two oldest sons. In the hospital, I will admit, while we were alone, I talked to God and Lumina and said that I pray she lives a long life but that we are called to heaven together. I have never had such a feeling like that. Needless to say a few months later when I read a story out of Minnesota about a mother, father, and their adult daughter with Down syndrome dying within days of each other I cried my eyes out of joy, I understood why that mother was able to let go the day after her daughter passed. It really was a beautiful story.
We had struggles with Lumina when she went into heart failure before her surgery. She had digestive issues we couldn't figure out (an elimination diet helped a lot) and the pharmacy made a major mistake with her Lasix prescription that wasn't noticed until she was hospitalized because she was losing weight (they printed the box directions to giver her 10x more than what the prescription stated). However, the silver lining in that mistake was that her surgery was moved up a week. At the ripe old age of 3 months old, our little light had open heart surgery. I prepared beforehand by going online looking at many post-op pictures so I would be prepared to see her after her operation. I am so glad that I did that. While I was so nervous and worried, when we were able to see her after surgery, hooked up to more tubes and machines than I have ever seen on such a little body, I was smiling and thanking EVERYONE I possibly could, from the doctor and nurses, all the way to the janitorial staff. And as we met different people both in and outside of the hospital we told them all why we were so happy! That experience changed our lives. We witnessed so many who suffered more than our Lumina, heard stories that were so heartbreaking. We will never be the same from being at the children's hospital and Ronald McDonald House for two weeks.
The remainder of her first year of life had ups and downs, two hospitalizations for pneumonia, severe swallowing problems discovered, and fluid in the lungs. But we are on the road of things looking up. She has great therapists, our diets are so much better, I research about and give her vitamins that help compensate for what that extra chromosome does to her body. Though I am an introvert, she has caused me to speak up and out and advocate for her, not only for her benefit, but for all of us. As I tell my older children, I do all of this extra (research, vitamins, therapy, etc.) so that hopefully Lumina will be a healthy adult so that instead of them having to take care of her full time all they will have to do is watch her back and let her be independent. God gave me all my children and all of them have helped me grow, but one thing Lumina has done has helped me to trust in God, something all the homilies in the world would not have been able to do like her life has.
Down syndrome isn't scary and no two diagnosis of Down syndrome come with the exact same issues. I have met many wonderful parents of children with Down syndrome. I have also mourned with many parents when their child with Down syndrome has passed away, one of the children being a baby girl of a dear friend and our two daughters with Down syndrome were going to be best friends just like our oldest daughters are best friends. The Down syndrome family is such a unique one full of hope, joy, pain, frustration, but most importantly, love that wants the best for the other. So, welcome to this family. We can't wait to join you in the journey you will be on with your child! And please, don't be afraid to ask questions or go up to that stranger who has a child with Down syndrome and just say "hi" or "thank you". You will expand your family that way, even if for just that one exchange.
Peace in Christ,
to Down's Syndrome Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.