On a beautiful day in August of 2009 my husband and I walked to the hospital in anticipation of what would be our last ultrasound. We were expecting our 6th and final baby.
As the technician finished the ultrasound she left the room promising to be back soon. We waited and waited and waited. Our stomachs started turning, the past 5 ultrasounds never took this long.
Finally a knock at the door, it was the Doctor and he delivered the news.
“Your baby has 5 markers for Trisomy 21 (Down Syndrome).”
Our hearts broke in half and the wind was sucked right out of our lungs. I could not even look at my husband. We were devastated but I had to know for sure. I was given an amniocentesis 10 mins later and had to wait 2 days for the results.
My OB called while we were on vacation. He explained the results confirmed that the baby would have an extra 21st Chromosome, the baby would have Down Syndrome. He could hardly say the words and I will never forget his voice. I turned to my family and said it was true, the baby would have Down Syndrome. We cried, and we cried for days.
That was the beginning of our journey with Down Syndrome. We started as 2 parents scared and so very sad. We were grieving the loss of the child we expected and fearing the obstacles our unborn child would have to over come.
We began telling our family and friends the news that our soon to be 6th child would have Down Syndrome. It was hard but I wanted everyone to know. I wanted the questions answered and diagnosis out there so that I did not have to answer questions when the baby was born. We discussed the diagnosis with our children and explained that the baby had a condition called Down Syndrome and all that meant is that some of the things like walking and talking that came easy to them might take this baby longer to master. They were so young and really did not understand what we were talking about. I kept the concern and the tears away from them. I did not want them to look back on their youngest siblings birth and think of sadness. I wanted them to have the same memories they had of all their siblings. Happiness.
The next months were spent educating ourselves on what Down Syndrome was and how we could help our child. Through that research I came in contact with individuals that truly believed in my child, anything is possible they would tell me. They had already started their journey and were full of ideas and advice. The community of people that support children with special needs are simply amazing. When they are in a room you actually feel the love and support, it is contagious. Sometimes you are ready and sometimes you are not but they are always there to pick you up when you fall.
Through my experience I have a few suggestions to parents expecting a child with Down Syndrome. The first would be to find a friend, it is so hard to navigate a new world without a tour guide. Finding a friend who has been where you are is immeasurable. The support, understanding an guidance they can provide will be so comforting as you get yourself orientated to this new path.
The next piece of advice would be to talk with your pediatrician. Explain your expectations and ask them to explain their experience with Down Syndrome. If you are not comfortable with their answer find a new pediatrician. It is so important to feel your pediatrician is on board with you. You need support and you need someone who can give you support. The last thing I would recommend is to look outside the box. The world is changing every day and so is the world of special needs. There are new therapy opportunities and advancements in research pertaining to diets as well as vitamins. My suggestion is to be open and weigh all your options. Make decisions you are comfortable with. There are no rules here, there is no one in this world that loves your baby more.
When my daughter was born the clouds separated and the sunlight warmed our hearts. Never mind she had an extra chromosome she was my daughter and I was so blessed! I will never forget my OB’s words when he lifted her from my belly, “Katie, It looks like you have your daughter!” After 5 boys I could say I have a daughter. There was excitement in the room, the nurses were asking her name and I had nothing. I had nothing because never in my wildest dream did I think this baby would be a girl! One of the nurses looked at me and said she looks like a Grace! How did they know we had waited for Grace for years? Here she was our own Grace sent straight from heaven and she was perfect, perfectly Grace.
When I looked into Graces eyes I knew, I knew she was exactly like all of my boys. She was a child, my child and I loved her. I knew at that moment there was a decision to be made. I could choose to be happy and celebrate this beautiful baby girl I had been given or continue to grieve. I chose to have a party….. I chose to rock this one life out!
The day we were released from the hospital was perfect. I have 5 beautiful boys waiting to meet their sister. When we came home they all were pushing for front row seats to get a look at her. They loved her from the instant they saw her. The questions were about what makes her a girl and not Down Syndrome. Down Syndrome was not even on their mind. They had a sister and to them that was all that mattered.
Since our daughter was born the days are lighter and problems matter less. The flowers are prettier, in fact I started noticing flowers in places I never even bothered looking before. Our life filled with beautiful people, people that we never would have met without this sweet baby. Our cup was full and it was easy to see beauty in the smallest things.
I know looking back the sadness was there for a reason, we had to feel the sadness in order to truly embrace the happiness. My daughter is now 2.5 years old and she is precious. She reminds our family what is important and she keeps us grounded. The joy she has brought our lives I will forever be thankful for.
We chose to administer our own therapy through the direction of National Association for Child Development (nacd.org). We chose to do this ourselves and it has enabled us to become very aware of her progress and as well as her struggles. We are the experts on her and that is very liberating. She is talking, she recognizes a huge stack of picture cards, she is following 2 step commands and is doing a great job with potty training. Grace struggles with her gross motor skills and because of that we work on them every day. We also feed Grace 99.9% organic, and she remains Gluten and Dairy free to keep her congestion under control. I love the saying, “a healthy diet makes a healthy brain”! She is a healthy happy 2.5 year old!
In her short life so far, Grace has had the opportunity to be on the cover of our local Special Parent Magazine here in Chicago, participate in a photo exhibit created by I AM WHO I AM (http://www.iam-whoiam.com a special needs nonforprofit) as well as model for over 50 etsy vendors. Her smile brightens a room and we are so blessed to have her as a part of our family.
We expect amazing things from her as we do from all our 6 children and I know she will do amazing things and more!