By Megan Wicklund
In 2021 our family was excited for our second child.
Everything had gone smoothly with my first pregnancy and Isabella, who was 2 at the time, was a little spitfire full of energy that brought us so much joy. We were eager to give her a sibling and watch them grow together.
As with my first pregnancy, I decided to go through genetic testing which was offered around December of 2021. I mostly did it because I wanted to find out the gender early. I wasn’t worried because the genetic testing for our first daughter had shown no abnormalities.
I expected to receive a call from the nurse who would tell me, “everything looks good, did you want to know the gender?”
Instead, when our doctor called me, I was nervous. The day we found out that our baby’s genetic testing showed signs of Trisomy 21 was one of the toughest days our family has been through. I was in shock at first and probably in denial as well. I didn’t understand how accurate such an early test could be. My husband immediately started researching it and told me that the accuracy was somewhere in the high 80% to 90%.
Our world turned upside down and around and around in an instant.
We are Social Security disability lawyers and not complete strangers to the struggles of individuals with disabilities, life threatening illnesses, injuries, etc. However, both of us were completely unfamiliar when it came to Down syndrome specifically.
When we shared the diagnosis with our closest family and friends they too had many questions. Many, almost all, asked if we were considering termination. I was shocked and offended at times at the question because, no, I had not considered it.
The moment we heard the potential diagnosis, once the shock wore off, I had started to think about everything I should do to make my baby’s life as fulfilling and wonderful as possible.
Of course, there was grief for the things we thought she wouldn’t be able to do, the ways we thought it would change our lives and the “picture” we had of our future family.
There was a lot of fear there too. Would our baby be OK? Would she be very sick and not be able to survive? We didn’t know anyone with Down syndrome and we didn’t think we knew people who had children with Down syndrome.
Would our baby be able to go to school? Would one of us have to stop working to take care of her? What did the future hold for her and for us as a family?
After the genetic test results, despite my husband being completely certain of the diagnosis, I still wanted to be sure. I underwent an amniocentesis test which had an accuracy percentage in the high 90%. The doctor mentioned termination was an option immediately after the test, before we got the lab results, based on the ultrasound that was conducted prior to the amnio, so we weren’t surprised when the results indicated Trisomy 21 was likely.
This was in January of 2022 and our baby was due in June. At that point we dove into learning as much as we could about what our new lives and world would be like.
We met with a genetic counselor who told us about some books we could read and about Gigi’s Playhouse. She told us about some of the immediate tests and concerns that would need to happen and why but then told us that above all our baby will be a baby and will just want to be cuddled and eat and sleep just like any other baby.
We read as much as we could about Down syndrome, about children and adults, about services, about what their lives looked like. The pregnancy was bittersweet. Something that normally would’ve been full of joy and excitement was now overshadowed by a sense of foreboding as we prayed that our baby would be born otherwise healthy.
On the morning of May 29, 2022, my birthday, I went into labor and Sofia was born that afternoon. She was healthy and beautiful and just everything we could’ve ever dreamed of.
“The most obvious difference of raising a child with special needs is probably the demand on our time. Many of the families at Gigi’s struggle to maintain a job due to the sheer volume of appointments”
We held our breath those first few days as they confirmed that she had Trisomy 21, but was healthy, that her heart was strong, her hearing good, her vision right, cancer-free. All potential complications that can come at birth. While she had a slight heart valve problem, it was not life – threatening and we were able to take our Sofia home. Those first few months were everything we needed to dispel the staggering fear of the “what if.”
At first, there were not many noticeable differences.
Her generalized muscle tone weakness did result in missed milestones, but Sofia seemed happy and was sociable and vocal.
At about 2 months the doctor noticed her delays with movement and recommended that we start looking at engaging with early intervention.
It took a little while to get that going. The early intervention process is overwhelming, to say the least, and slow. The case workers are lovely and very helpful, but they can’t help that there are not enough therapists, of any kind, to help our kiddos. So we waited.
That is when we remembered Gigi’s and decided to stop by. Everyone was amazing. We met parents and saw children and adults happy and thriving. It gave us hope! We were eager to get started and make connections. We joined GigiFit Infant, a group exercise program based on physical therapy principles. The lead volunteer was the head of PT Education at Syracuse University. There were three or four other infants in the group that were a bit older and later a younger baby joined as well. At the time Sofia was not pushing up or rolling over or sitting up yet. She could only lie on her back and this was causing her head to have a flat spot. We were waiting to start PT through early intervention so we were desperate to get some guidance so we could help her. With the help of GigiFit and her PT through early intervention, Sofia began to push up, roll over, sit up and meet all sorts of physical milestones.
Other milestones were also missed and very quickly we were added to waitlists for a speech therapist.
Thankfully we found a special education teacher and occupational therapist fairly quickly and she was able to start those within weeks of the request. We waited for a speech therapist for a year. It is the longest waitlist in our area.
Through it all we were engaged with Gigi’s. We love to go to the family activities and see how well the other individuals are doing. When Gigi’s started the Amina Grace program, we were able to get Sofia one-on-one speech therapy too. Coming weekly for GigiFit gives us community, other parents going through the same things we were going through. Wondering if they were making the right choices, supporting their kiddos in the best way, going to the right doctors, requesting the right tests. Are we doing enough so that she can thrive? It’s a big question that all of us parents ask ourselves every day.
Parents of children with Down syndrome have many of the same questions and concerns as other parents do. But perhaps the difference is that the possibility of something going wrong feels a little higher.
The most obvious difference of raising a child with special needs is probably the demand on our time. Many of the families at Gigi’s struggle to maintain a job due to the sheer volume of appointments. Sofia had therapies four or five times per week. She needed more, but there were no available therapists for it. We were missing several hours of work per week to take her to her therapies. And in that way, I was deeply conflicted and felt guilt about not pushing harder to find more ways to get her therapy. Some of the parents I met at Gigi’s decided to have one parent stay at home or only work part-time and apply for Social Security to supplement the household income so that they could keep up with the appointments and the extra care their child needed to thrive. We are all just trying to do our best, managing with what we’ve got.
Raising a child in general is a beautiful, overwhelming, amazing and demanding experience. The extra demands of a child with Down syndrome can at times make us feel at a loss.
We are lucky that we found a place like Gigi’s where we have support, community, friendship, a family. It has made those tough days, when you really need a hug, just a blip in the experience.
Sofia has brought our family so much joy. She is a sassy, funny character who loves to talk, sing and dance. She brings a smile to everyone who meets her as she waves “hi” and tells them “you look cute.” At the young age of 3 she knows what she wants and is not afraid to go after it or to tell you “no” if you try to stop her. She has goals and wants the same things we want. She wants independence, friendship, a lot of hugs. She loves pizza and Barbies. She wants to learn to go potty and be a big kid. She is not letting anyone or anything slow her down.
We are so glad that we get to help her reach those goals and become her best self! I can’t imagine our lives without Sofia in it. Our girls are our world. Watching them grow together, love, learn, stumble and get back up; it is our biggest joy and purpose.
Megan Wicklund is a Social Security disability lawyer and lives in the Syracuse area.