What My Daughter With Down Syndrome Has Taught Me
When we think of ourselves as parents, one of our main jobs is teaching. We teach our children to dress themselves and tie their shoes. We teach them how to be kind and polite. At some point in our parenting journey, we realize that we are learning too. As a mom to a sweet almost 18-month-old with Down syndrome, I’ve realized that she has taught me far more in the short time I’ve had the honor to be her mom than I will ever teach her. I want to share some of that wisdom with you.
Different is beautiful!
When you’re first told your child will be born different, it can be scary. We are taught from an early age to fit in. Being like everybody else is safe. I’ll admit I was scared of different, that my baby’s extra chromosome would make her somehow less in the eyes of the world. Unfortunately, there are those that still see her as less because of her differences. But she has changed my heart in such a profound way, and I know now that different is beautiful and it is absolutely never less. Our world is full of so many beautiful differences, and I believe each and every one is handcrafted by God. I’m so glad that Ivy has opened my eyes to this truth.
Slow down and enjoy every moment.
We live in a world that is constantly moving. We are rewarded for doing things fast and it seems like everybody is constantly running somewhere. Having a child with developmental delays and medical complications has a way of changing the speed of life. Ivy has forced me to slow down and truly enjoy every moment we have together. She finds joy in the smallest things and therefore so do I. Her babyhood is lasting for so much longer than with my other kids, Zoe and Eli. I still have my occasional moments where there is an ache for how she is falling behind her typical toddler friends, but it’s in those moments where she will melt her sweet little low tone body into my chest and I’m reminded what a gift I’ve been given. How often do we miss our babies once they are grown? We wish we’d gotten just a little bit longer at each stage. Well, I kinda won the baby lottery on that one! This lesson has followed me into other aspects of my life as I learn to truly slow down and enjoy the moments I believe God has given me.
Celebrate every single inchstone!
Until Ivy was born, I never fully realized just how much we take for granted in the development of our kids. Until I had a baby who really struggled to eat, I never realized just how many muscles and processes it takes just to drink and swallow liquid. Until I had a baby who had hypotonia and gross motor delays, I never realized how many steps there are to learning how to sit, crawl and walk and how much strength is needed. So every time Ivy makes a small step — an inchstone — forward towards one of these big milestones we celebrate it so hard. I’ve cried with just about all of these inchstones.
Now that my eyes have been opened to the fact that big milestones aren’t always a given, each one met feels like the most precious gift. Aren’t there a lot of places in our lives where we could celebrate the inchstones? Not just graduating high school or college, but each test and paper it took to get there. Not just winning the game or performing in a big show, but each practice and dedicated hour leading up to it. Celebrate big friends… that’s how we do it over here these days!
Hard and heavy things have a flip side of intense joy.
The past few years have brought our family some tough moments. But I believe God has shown through it all that He is with us and has given us such sweet joys throughout. Losing Ivy’s twin sister Willow was one of the hardest things I’ve experienced. It has made the joy of having Ivy in my arms so much more palpable. The family and friends who have surrounded us from the loss to Ivy’s diagnosis and subsequent medical challenges have brought us so much joy. It seems like the heaviness and sorrow allows us to experience joy on a deeper level. When we named Ivy, we chose Joy to be one of her middle names. We did this to claim joy on her behalf, to tell the world we welcome our sweet chromosomally enhanced baby girl with joy and believe that is what she will bring to our family. Turns out we were 100 percent right.
Show up, even when it’s hard!
As previously discussed, a lot in this life comes harder for Ivy. Her low muscle tone and loose joints mean she has to work harder to make gains in gross motor, fine motor and speech. I read an article that compared the difficulties of talking for people with Down syndrome to that of a typical person trying to be clear and articulate with a mouthful of cotton balls. Ivy has been in one form of therapy or another since she was 2 months old. It hasn’t been easy for her. But she shows up. We put her braces on and she works hard. She keeps trying. It may take months or even years, but she keeps going. Incredible.
Forgive easily. Focus on the good.
There is a common myth about Down syndrome. It is what I heard the most after her diagnosis and still hear very often when we’re out and about. “People with Down syndrome are always happy.” If you really think about this statement, it’s just a bit silly. Nobody is always happy. Ivy gets mad and sad. She gets annoyed and frustrated. She is not always happy. However, I’ve decided this myth has a grain of truth in it. Something I’ve noticed about Ivy and others gifted with an extra chromosome is that while they get sad and upset just like typical people, many are able to let go of those emotions more quickly. They have the beautiful ability to live in the moment. For example, when Ivy gets her blood drawn she starts crying as soon as they pull the tourniquet tight. But as soon as the poke is done and the nurse is apologizing to her, she gives the biggest smile. I’ve heard more than one medical professional say, “Wow, she forgives so easily!” I think we could all learn this lesson from our chromosomally enhanced friends.
If there is one thing having a child with a disability will give you, it’s perspective. Not only from our own experiences but also from the experiences of lots of our new friends who have children with disabilities. Before Ivy, it was so easy for me to get bogged down in the drama and frustrations of everyday life. Whether it be a bad day at work or something going wrong at home, things could really just stick with me and bring me down. Now that I’ve worried about my child’s life and health, held her down for medical testing that was painful for her, and handed her over multiple times for surgeries and procedures — now that I’ve watched children fight for their lives with cancer, respiratory or heart conditions — it’s a lot harder to be pulled down by stuff that is just not important in the grand scheme of things. Don’t get me wrong, I still get frustrated and have bad days. When I do though, it’s a lot easier to pull myself out when I put it into perspective.
Every life has value, no matter what.
I’ve always believed this to some degree, but it wasn’t until other people had opinions on whether my unborn child should be given a chance to live that I fully embraced it. We often hear “oh I just want a healthy baby,” but what if your baby isn’t “healthy?” Does that baby have any less worth? No! And it’s no different for the baby that only grows for a few months before a miscarriage. The baby diagnosed with complications that will prevent it from being born alive. The baby that is born and only lives a few hours. The baby that spends its short life in the NICU before being called home. The baby with an extra chromosome. The baby with a limb difference. The baby that may never walk. The baby that requires surgery to go on to lead a healthy life. The baby that requires extra doctors and therapies. The baby that is born perfectly typical and requires nothing extra. Every single one of those humans has an impact on this world and is worth a big-time celebration.
We need to change the way we think about disability.
Did you know about 56.7 million people in the U.S. have a disability? It is the largest minority group in our country. It is a group of people that is often overlooked and marginalized. Because typical/able-bodied people feel uncomfortable with differences. Because they overlook all of the ways people with disabilities are capable. We need to start teaching our children about disabilities from a young age. We need to use correct terminology. We need to lead by example and show that people with disabilities are more like their typical peers than they are different. We need to make room at the table for people with disabilities to share and bring their talents and perspective. We need to make accommodations when needed and ensure the world we live in is inclusive to people of all abilities. We need to think about the language we use.
Did you know that 67 percent of babies with a Down syndrome diagnosis are aborted in the United States? This number climbs astronomically in other countries. A huge reason for these numbers is the information given to women when they receive a diagnosis. They are told of all the things their unborn baby will “never be able to do.” They are told their child will have “no quality of life.” One look into the lives of families who have a child with a disability will show you those things are simply not true.
Inclusion is so much more than what happens in the classroom.
Before Ivy was born, when I heard the word inclusion I thought about a classroom. I didn’t know much about it, but I knew that it involved “allowing” students with disabilities to be in a general education classroom with their typical peers. Now that I have a child with a disability, I know it is so much more. Inclusion happens when all people are valued and belong. Sometimes it involves modifications and accommodations to help ensure everybody is thriving. Inclusion is about realizing that it isn’t something that is done out of pity. We don’t include others because it’s the right thing to do. We include others because what they bring to the table adds value. We need to live this in our schools, our workplaces, our churches, our dance studios — everywhere!
Advocate for what you believe in.
Never did I see myself in the role of advocate. I’m a recovering doormat. I’ve been a people pleaser my whole life. I’ve never been a public speaker, and writing has always made me cringe. And now, here I am. There’s nothing like the birth of a child who has no voice of her own yet to thrust me into a place I never thought I’d be. I would do anything for her, and that includes shouting the worth of people with Down syndrome and all people with disabilities. We have such a long road to travel when it comes to creating a world that embraces differences and I am here for it. I write this blog, I share on social media, because before Ivy I just didn’t know any better. That is why I advocate and educate. Because I know that there are so many people like I used to be, not unwilling, just not knowing.
Find your tribe and love them hard.
Not one of us can survive and thrive in this life without people to help us. Throughout the past few years, I’ve learned just how much I need my tribe — the people I can lean on, fall apart on, cry with and laugh with. The people who are there to help with whatever I need. No matter what journey you are on, find people who will love and support you. Make sure you tell them just how much they mean to you. And when you can, be that person for somebody else. We are all in this life together and I believe we can be the very hands and feet of Jesus to each other.
I continue to be in awe of just how much my incredible Ivy has taught me in her short time on this earth. I look forward to all of the lessons I will learn from her as she grows. She makes me better every day!