Your Resilience Is Not Forgotten

By Laura Hayner

People are always praising parents for their babies being good sleepers, great eaters, getting their first tooth, or hitting their developmental milestones, but what parents and children of Down Syndrome should be praised for is how brave, strong, and resilient they are.

In the first year of our children’s lives, we see more doctors than some children without Down Syndrome will ever see: cardiologists, geneticists, physical therapists, occupational therapists, pediatricians, speech therapists, ENTs, eye doctors, the list is endless.  And that list doesn’t even account for those of us who end up having to do long term stints at children’s hospitals due to complications with RSV or other viruses common in children’s younger years. Starting the first few days of their lives, babies with Down Syndrome will have more tests done to them than most babies ever will.

If you are like me, all of these visits stress you out for days (sometimes weeks) beforehand. Compounding the stress of packing up an infant or young toddler in a car regardless of whether it’s nap or snack time (because most often the doctors dictate the time you have to go to your appointment with little regard to any schedule you may have in place) is the additional stress of watching your child be hooked up, poked and prodded, and having no clue what information you’re going to receive at the end of the visit. Is your child going to need to have open-heart surgery at just three months old? Will they have thyroid problems at just a year old? Can they see? Can they hear? All health issues parents with children who do not have Down Syndrome will likely never think about.

And yet, every time, no matter the outcome, no matter what our children are asked to endure, somehow they manage to come away with a positive attitude. They aren’t ever praised for being a patient toddler laying still for an echocardiogram.  They aren’t ever praised for being so brave while getting their finger pricked and blood drawn to make sure they don’t have leukemia or a malfunctioning thyroid. They aren’t ever praised for being so strong while having pneumonia hospitalize them for two weeks. They aren’t told how resilient they are that despite all of these extra hoops to jump through they still sleep well, eat well, get their first tooth, and learn to sit and crawl and walk.

And I don’t think it’s too far of a leap to say our children are this way because they have some amazing parents. When it is easy to forget because we keep hearing worst case scenarios, or because life gets so stressful with a calendar full of doctors, or because the questions about what milestones your child has or hasn’t hit yet are so loud, take a second and just remember, not only are our babies strong and brave and resilient, but so are we. It’s just that no one ever remembers to say that part.