Sitting next to Samuel snuggly secure in his car seat, he leans to the left as I sneak a kiss on his cheek. He smiles, leans back. I pucker and he leans toward me for another kiss. I oblige and am rewarded with another brilliant smile.
We play the game until we arrive home.
As I unbuckle him from the car seat, I’m still smiling. These are the moments that bring me great joy. As parents, I imagine we all have those precious cherished times we tuck in our heart.
I often hear others say they could never do what I do. The thought of raising a child with special needs is seen as a herculean task beyond what a normal person can bear. I’m often commended for my role as a special needs mom but here are a few secrets I’d like to share.
Indeed, the first few years of Samuel’s life were a challenge. Our son spent 6 months in the hospital and returned home to 24 hour nursing care for several years. Here’s a secret, God gave grace and an incredible peace through it all. We took each day as it came. If challenges came in Samuel’s health, we prayed for him to get better. That’s not to say we didn’t have hard days but we all have hard days, don’t we?
Living with a child needing a ventilator requires an understanding into the world of medicine most of us don’t encounter. We learned to change Samuel’s trach, suction, give manual ventilation if needed and become proficient in all the emergency equipment required. Here’s a secret, you get used to it. The world of medical equipment and using it to keep your child well becomes second hand. This is our new normal.
The respiratory therapist told me we should have a ventilator party the day my son doesn’t need it anymore. My mind rejects the idea. Doesn’t he know my son has a condition where he’s not expected to ever come off the ventilator? Perhaps, he will not need this life saving equipment during the day; maybe, but to come off it completely, incomprehensible. Here’s a secret, your child will surprise you. My son has been bucking the odds since the moment he was born. About two years ago, we were able to turn off the ventilator. The impossible, happened. I count this as a miracle.
It’s true, I don’t think I could raise our little guy without someone very special. Here’s a secret, I have an amazing husband. You’ve often heard it said, God gives special children to special people. In the case of my husband, I agree. Early on he understood the medical aspects of Samuel’s challenges, from understanding the dizzying world of PEEP, pressure support, SIMV, Tidal Volume to designing an apparatus used as a reminder to turn off the oxygen tank.
And, Samuel loves his Daddy. They have a tender relationship of love and respect. He almost always listens to Daddy.
Here’s another secret, our days have become extremely normal. Our son loves his daily routine and will only get upset if he’s teething or when he wants his cereal. We have lots of moments like the kissing game where pure joy overflows. And though I understand there are many differences between my son and a child without his diagnosis, we have found our happy place.
So, we continue to parent our little guy who was given a not compatible with life diagnosis called Thanatophoric Dysplasia Dwarfism. We don’t know what his future will bring but we cherish each smile, every giggle and many milestones. And as we continue this journey, we see the secrets that surround us and are thankful.
What are your family secrets? I’d love to hear your story. Post your comments below.
Author, A Miracle In My Living Room