World Down Syndrome Day is a day set aside to raise public awareness of Down syndrome. It is celebrated 3/21, because Down syndrome is caused by having 3 copies (rather than the usual pair) of the 21st chromosome.
For parents who will in the future receive the diagnosis that their child has Down syndrome, it is so important that the “awareness” shared is a more complete picture of what it is like to have a child with Down syndrome, rather than just the cold medical facts many parents are presented with.
Parents desperately want to know if their family is going to be okay. I want to share with you that our family is more than okay! As I gave a lot of thought to what I wanted to write for World Down Syndrome Day, I knew what new parents and family members need most when their baby is born with Down syndrome is HOPE.
Sixteen years ago, when our third baby was born we didn’t really know what Down syndrome was. When we learned shortly after birth that the doctors were pretty sure she had Down syndrome, we had no idea what that meant for our family.
My husband especially felt blind-sided and grieved. Even early on, once we got the diagnosis, I could see that God had been preparing me for what was to come. Even in our fears in those early days, it was so clear to us that Jessie was meant to be here.
If you or someone you love has recently found that their baby has Down syndrome I want to address the major fears we had at Jessie’s birth and the way they have worked out.
There are some pretty scary sounding possibilities that you are faced with when you receive the diagnosis. With my other two kids, most of those things could happen to them at some point in their lifetime, but I wasn’t made to consider that when they were newborns.
The way I came to view this was like the pamphlet you receive from the pharmacy when you get a new prescription. Any of those side effects could possibly happen to you, BUT, no one person experiences all of the possible side effects. The same is true with Down syndrome.
Your child/loved one could experience any of those health concerns but will not experience all of them.
Jessie was born with two heart defects, ASD and VSD. Her heart defects were diagnosed at 2 weeks and she had open heart surgery at 3 months old. It was a struggle for her to gain weight until she had heart surgery. Those weeks before heart surgery were emotionally and physically draining as we tried hard to help her gain weight and anticipated heart surgery. While they affected her before surgery, hers were the easiest kind of heart defects to repair surgically. She came through open heart surgery like a champ. Her heart is healthy now, and she’s otherwise been mostly healthy.
Jessie had two sets of ear tubes (I mean, my son without DS had one set), she has not had any hearing loss. She had eye muscle surgery (elementary age) and wears glasses.
Will she be able to feed herself and behave in a restaurant?
This seems so silly to me now, seriously, so please don’t judge me to be crazy. It shows my complete ignorance of Down syndrome at the time. You might rightly decide we think too highly of eating out if this was one of my first thoughts. Of all the possible questions on my mind, one of the first things I wondered was whether our child would be able to function independently enough to feed herself. I wondered if she would behave well enough for our family to eat out in restaurants.
She learned to feed herself at slightly behind the age of other “typical” babies. Not only can she feed herself, she can make herself biscuits in the microwave for breakfast, and recently made sandwiches for herself, her dad and me after he and I had been out doing yard work. She would rather watch tv or play video games but she sometimes helps me bake. She has chores, earns an allowance, and is pretty independent in many ways around the house.
She has eaten in restaurants almost from birth 🙂 She was taught to behave and was disciplined when needed. She behaved better than most kids her age when in restaurants as a baby and toddler. Although sassy, she is kind, thoughtful, and very appreciative. She was taught to be this way in the same way her two siblings were.
How will our other two children be affected? Will they still be able to do extra curricular activities?
I worried how our other two children would be affected. Our oldest had just turned 7 and was starting gymnastics. They both played t-ball. I wondered if Jessie would have health concerns or other factors that would restrict our family activities.
Our other children have been affected, but mostly in positive ways.
Jessie had physical, occupational and speech therapies in the first few years of her life. That was a challenge for me as a mom of 3 and homeschooling. But, it helped Jessie, we made it through, and it wasn’t an issue for my other kids at all. They enjoyed the therapists that came to our home at first. Sometimes they were interested and helpful; other times they went off to play.
Before Jessie’s heart surgery, we were under some stress trying to help Jessie gain weight. This did feel like a stressful time in some ways for all of us, but lasted a short time. The other more minor health concerns didn’t drastically affect our other children. We did have to make some trips for check ups a few hours away, but they kinda enjoyed the day trips. Parents, not so much, but the kids just watched videos and got to eat out.
Because of their exposure to all the therapies Jessie had, our oldest daughter later decided to become a PTA (Physical Therapist Assistant). She decided not to work in pediatrics; but she loves her job as a PTA. This is a direct result of the positive impact she saw the therapists have on her sister and our family.
Our older two kids weren’t restricted in participating in any of their activities because of Jessie having Down syndrome. Being the third kid, when Jessie was little she was plopped in a stroller and drug everywhere we needed to go. T-ball, softball, baseball, dance, gymnastics, football, soccer…they did it all and she was along for the ride. Once she was older she was cheering for them. When she was old enough to participate in gymnastics and then Miracle League baseball and Special Olympics they were cheering for her.
How our other kids were affected in positive ways:
Our kids at a young age were around not just Jessie, but other kids with Down syndrome and other disabilities. They learned that different isn’t bad, it’s just different. They saw Jessie as their dearly loved baby sister. They had anticipated her birth and loved her before she was born. She needed extra help sometimes and they were happy to give it. With or without a disability, that’s what you do for your sister.
They volunteered with Miracle League and helped with me with mailings for our Down syndrome group or whatever was needed. They learned to serve others through these activities and other volunteer projects that weren’t disability related. It was all good for them.
Yes, there were times it was a little hard for them. In the end, even those hard things served them well. God can use all things for our good and will for those who belong to him.
Those two kids that were 7 and 5 when Jessie was born are now 23 and 21. Having a sister with Down syndrome helped them to become kind, compassionate, and patient.
We all thank God for Jessie and can’t imagine our family any other way.
If you have a baby with Down syndrome, you will one day encourage another family. Your specific experiences will be different. The health concerns or level of difficulty might not be the same. But one day you’ll look back and won’t be able to imagine that your life had gone any other way. And then you’ll tell some other mama that she can have HOPE.
Happy World Down Syndrome Day, ya’ll. Wear some crazy socks. High five or hug someone with Down syndrome. Hug a mama whose kid has Down syndrome.
This year, World Down Syndrome Day coincides with our Special Olympic Track and Field Day, so we will be hollerin’ like a bunch of lunatics at our kids and friends that are racing. Good times.
Till next week friends,