I am incredibly thankful to have my friend Carissa sharing her story on today’s What It’s Like feature. Carissa is incredible and has taken an unexpected diagnosis and turned it into something that celebrates God’s greatest gift to us – children! She is moving mountains and God has used her so much in her calling to help parents receiving a Trisomy 21 diagnosis for their child to celebrate the precious gift they have been given. We have known each other nearly as long as I have lived in Minnesota and now I get to enjoy attending MOPS with her. Thank you Carissa for sharing your story with us today!
Here’s what it’s like to be given a Down syndrome diagnosis for your child.
My husband was waiting for me to recover after the birth of our second son. He was sitting alone in the room when the Nurse Practitoner walked in.
She asked, “Are you aware of Trisomy 21?” He looked confused. “Down syndrome. Your baby is showing signs of Down syndrome,” she bluntly explained. She then listed off characteristics that Jack was showing and said, “Well, just enjoy your baby.” And left the room.
Within the hour, I was brought back to the room where he was waiting, and that’s when he told me that they thought our new baby boy had Down syndrome. I cried out. There were many tears at the beginning. Feelings of confusion, shock, and fear of the future.
And that is how we were given the diagnosis of Down syndrome for our baby.
So, our journey began.
What would our lives look like with a child with a developmental delay? How would this change our plans? Would he live with us forever? Be able to talk? Would he look like his family? How would this affect his older brother? Would he be accepted by the world?
I remember thinking that someone was going to call us from the hospital and tell me that the results came back from his blood test, and they were wrong…that he didn’t have Trisomy 21.
But that phone call didn’t come.
And as I looked down at this little baby that surprised us with his extra chromosome, he opened those precious almond shaped eyes, and my mama heart felt him say, “Just love me.”
A nurse walked into our room and looked over at Jack and she said, “Look at your precious baby.” And she reminded us, this is our precious baby, whom we prayed for from the moment we found out we were pregnant. She encouraged us to grieve the baby we thought, and love the one we were given.
Slowly, feeding by feeding, sweet moment by moment, milestone by milestone. I started to see the beauty on this journey. The unexpected joy. I could feel myself falling more and more in love with this precious little gift.
And we grew in a way that I can’t even articulate in words. You see, the Down syndrome diagnosis that my husband and I were given didn’t define Jack. We don’t look at him and think about Down syndrome. We see our son. We think about how much we love him and the joy he has brought to our lives. How he has changed us all for the better. He’s loved by so many, whom call him brother, grandson, nephew, cousin, friend, student, classmate, and teammate. He loves cars and trucks, going to the park, hockey, Lightening McQueen, and his all-time hobby of of listening to music. The biggest influence on his life has not been the extra chromosome, but more so, the loving environment that he has grown up in. He goes to school with his typical developing peers and follows the expectations of the classroom. We believe in him.
Many of those fears in the beginning have not come to fruition. Jack is a loving, caring, kind person that respects others and contributes to society. He will (and has) found friends and interests he enjoys and someday will attend college (thanks, Bethel University). He will continue to inspire others to work hard and do their best. Research shows that 99% of people with Down syndrome love their lives. I know a lot of people that aren’t rocking the extra chromosome that don’t love their lives. I’m thinking we need more people in the world with Down syndrome. Unfortunately, the sad statistic is that the population of people with Down syndrome is decreasing by 30% as a result of prenatal screening.
Our lives don’t look much different, although we have been changed. So much of my thoughts at the beginning were around how much he would need us, and really it’s us that needs him. Fear does a crazy thing to us, distracting us from what we know and believe to be true.
We’ve been given one of the most unexpected gifts in who he uniquely is. He helps us to slow down and appreciate the little things. He works hard at things we take for granted and when he achieves his goals, we celebrate big time. In a world that focuses so much on the outcome, we get a chance to enjoy the process. Where the growth happens. We’ve been changed in the most beautiful way. He has been our best teacher.
Yes, there are challenges, but we’ve also come to realize in raising Jack’s siblings (each with one less chromosome than him), parenting is hard. And from what I have observed thus far in life, all of us will receive some sort of unexpected news in a variety of ways over our lifespan. We just happened to have received this unexpected news at Jack’s birth. And can say we are thankful for the ways that diagnosis has changed us.
The part on this journey that has been the most difficult is not what many would assume. We wouldn’t change anything about Jack. We would change the way the world perceives and values people uniquely created like him. We don’t let perceptions or stereotypes influence our belief in others. Knowing each person is God’s masterpiece, created in His image to do great things. We believe that EVERY life has purpose and unfortunately society has put a value on someone’s life based solely on the number of chromosomes they have.
Now our family gets the wonderful opportunity to welcome, celebrate, and congratulate new families on this journey. We provide gift baskets (Jack’s Basket) with baby items, along with free resources, programs, and opportunities to connect with other families. A chance to come along side those that will experience the same unexpected news we did, to encourage them and support them as they travel the road that only ‘the lucky few’ get to travel.
My life has been changed for the better because of the unexpected Down syndrome diagnosis we were given. I wouldn’t change him for the world, but I will change the world for him.
Jack recently turned 5 years old and I wrote a letter to him. Here is an excerpt of the ‘Dear Jack’ blog post. “In the past 5 years, I’ve learned a few things about Down syndrome, but I’ve learned a lot about YOU. You’ve reminded me to trust. To surrender. To see others. To love and to be kind. To stay humble. To grow. To slow down. To appreciate the process and not focus on the outcome. To dance. To breathe. To not take the little things for granted. To care less about the opinions of others. To work hard. To ask for help. To be patient. To believe. To believe in others. To be in community. To celebrate.”
Carissa has a Bachelor of Arts in health and physical education from Bethel University, and a Master of Education in applied kinesiology with an emphasis in developmental adaptive physical education from the University of Minnesota. Carissa felt led to start Jack’s Basket when her own son, Jack, was born with Down syndrome. After an abrupt and assumptive diagnosis experience, she wanted to make a change for future parents, ensuring that they felt their child was a reason to celebrate. Carissa spends her days speaking to medical professionals about how to deliver the diagnosis without bias, working with the Jack’s Basket board to further the mission, connecting with volunteers who deliver local baskets, blogging, and meeting with potential donors. You can connect with Carissa on her blog, Facebook, Instagram and her website, Jack’s Basket.
PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called ‘In the Wait’!
PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cycles, raise a child with special needs, use an egg donor, be a DIY-er and home style blogger , be a NICU nurse, Live fully in singleness while still hoping for marriage, suffer with endometriosis. experience depression, start a company, have a micro preemie, lose a parent, be childless not by choice, have a spouse with a chronic illness, fund raise for fertility treatments, have a traumatic birthing experience, take a natural route with infertility, be on a reality show, go through the adoption process, have male factor infertility, be a stay at home mom, and be an entertainer. Stay tuned for many other amazing topics to come every Tuesday and Friday here!