Finding out your child has special needs is like swimming in an ocean, when you thought you were swimming in a pool. Suddenly, the waters are surrounding you without the safety of the walls to grab onto, without the lines below and flags above to guide you.
You feel thrown into the depths of a life you are unfamiliar with, trying your best to tread water, although there is no shore in sight, no shallow end, and you are barely keeping your head above water. It takes your breath away. For a moment, time feels frozen, and everything you once knew is no longer. You have no choice but to learn to swim and go the distance.
Parenting in and of itself is both a blessing and a challenge. Still, it takes a different type of strength and resilience when you are advocating for your child and navigating the waters of meeting your child’s unique needs on a daily basis. As parents of children with genetic conditions and physical, developmental, and intellectual disabilities, we hope for the best for our children. We never want to lower our expectations of them, and we want to see them soar above the odds and statistics. We are their biggest cheerleaders.
I’ll never forget what it felt like hearing a diagnosis for the first time when I was about 20 weeks pregnant with my second baby. I remember feeling as if I was outside of my body, like everything was spinning and swirling around me, and her words “Trisomy 21” echoed. After the initial shock, my first response was, “Did I do something that could have caused this?” So much of the time, as parents, we question ourselves first.
We feel responsible for things that are often out of our control. My doctor lovingly reassured me that nothing I had done would have caused anything and that it was going to be ok. After pursuing further testing, we received a final answer to our question:
Our child would be born with Down syndrome.
That answer brought about even more questions, as you can imagine. We proactively bought literature to read, got connected to the DSAGSL, and researched everything we could. I plugged into a birth group through the Down Syndrome Diagnosis Network. I followed numerous Instagram and Facebook accounts of parents sharing their lives with their children and was so inspired and encouraged. It lessened my fear and gave me so much hope.
One message that kept running through my mind as we processed our diagnosis and followed other people’s lives with Down syndrome was that our kids can do anything, and they should never be underestimated! I still believe this wholeheartedly.
But, there arises a new emotional challenge when, after clinging to these hopes and dreams of surpassing the odds and beating stereotypes, your child repeatedly struggles to meet milestones, and you already see the gap widening.
For a very short time, when my son, Harrison, was about a year and a half, I was disheartened by him falling behind and stalling in his progress developmentally. I’d see other kids with Down syndrome on social media who were much younger than him, but doing more advanced things than he was. And my first response was, of course, “What am I doing wrong? Should I be doing more? What are we missing?”
Comparison is the thief of joy, friends.
That is absolutely true, and I quickly learned from one of our amazing First Steps therapists to stay in our lane and focus on the INCH-stones Harrison was achieving rather than the milestones he wasn’t reaching (yet).
Celebrate every INCH-stone, for They become the milestones!
In our achievement-based culture, we focus on results, numbers, statistics, and what we can DO to bring value. If that was the ultimate measure of worth, Harrison would be failing miserably. He is three-and-a-half years old, not walking or talking, not even close to beginning potty training, not self-feeding, has one or two signs, still drinks out of a bottle … but, my goodness, the joy he brings to our lives is immeasurable!
My love for him goes much deeper than what he can do or achieve.
Simply by being Harrison, he has value, he is lovable, he is worthy and wanted. Our children with special needs can teach us to slow the heck down, appreciate the here and now, and that we don’t have to prove ourselves – that we are known and loved, just as we are, simply by being ourselves. Moms, you are doing great!
With that said, I do think Harrison can change the world, one heart, one giggle, one snuggle at a time, and I can’t wait to see what he will do in his own time!
P.S. The ocean view is quite beautiful!