5 years ago, at about 23 weeks pregnant, we received the call that are new little guy likely had Down syndrome. We wouldn't know for sure until after his arrival on December 28, 2012, but we researched and prepared for what we thought would be "worst case scenario."
I wish I could go back and give myself the gift of time back to enjoy my final pregnancy. The minutes of tears I cried in the shower. The hours of web searching for photos and stories. The days full of worry. It all stole away the joy in each day. With five years of insight, a letter to myself...
Remember when you thought had such a perfect picture of what parenting would look like? It was long before the miscarriages and NICU time and out of state specialists visits. It was long before the sleepless nights and broken bones. But with each new child welcomed into our family, that picture changed and shifted to become OUR PERFECT.
You knew that life would work out on its own schedule and that even in the midst of the struggle and challenges, there would be such great happiness and beauty.
Your parenting journey had already shown you your strength and resiliency. Like days before of sitting beside your daughter in a NICU isolette, just yearning to bring her home, yet being able to finally touch her soft hands and caress her plumping cheeks. Or months of appointments for unanswered questions to solve your son's unexplained weight loss. Or an unexpected surprise of a new little one when you thought you had moved onto the raising school aged children phase. You rolled with the punches then, but when the news of another turn of your path came- you faced it differently.
I know you had so much at your fingertips and it did ease your mama heart a bit to look at photos and read stories. But it really did steal your joy. The hours spent researching the what-ifs stole away hours of getting to know that baby growing inside for what HE was and not what the range of experts would tell you he would be.
But then, he arrived.
And the worry began to slip away as you slipped your arms around him. And the fear began to fade as you snuggled and he faded off to sleep on your chest. And the days became yours and not the what-ifs as you began to know him and see him as your son, rather than a diagnosis.
It surely wasn't easy to hear that your child may face additional challenges and heartache in an already uncertain world. But remember all of your worry and concern is really rooted in love and hope.
This will feel impossible to really hear right now --I know the new diagnosis seems to rip the hope out of the future for your child, but it doesn't have to.
Your child will be your child.
You will love him with all of your heart (and then some).
You can still be able to do all of the things you dream.
You will see your inner mama bear develop and proudly bring her out as needed.
Your family will have such a heightened sense of love and understanding and patience.
You will meet some of the most incredible, genuine people that you likely never would have crossed paths with.
You will do anything to do right by your child and family.
I know it may seem too good to be true. You've just heard the words Down syndrome and it doesn't seem that it could all be true, but for our family- it is. I'm not guaranteeing you each day will be filled with rainbows and unicorns, but the heartaches and tears will be different and somehow more.
So, try not to think about all of the what ifs and the could-go-wrongs. Work to see that joy each day. Take it all as it comes and walk alongside your children and family to meet them where are each step of the way. Teach them to find the joy in each day and get ready for another wild parenting ride.
P.S. I'll give you a month or two into the journey to tell you all about your current future; I'm sure you will find it completely impossible right not to believe that in five year's time you will have become best friends with a woman in Australia, traveled all around the country, shared celebrations and tears with families around the world, written a book that has sold thousand of copies and become an Executive Director of nonprofit you helped to start. Mind blowing, but true. Every step on your life journey was so purposeful for your life today. Dry those tears, for now, and give that baby bump a tender rub. You'll be glad you did.
Bio: Jen Jacob is the Executive Director and one of the founders of the Down Syndrome Diagnosis Network. She is also a co-author of The Parent's Guide to Down Syndrome. Jen lives in Iowa with her husband and four children.
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.