I was recently watching The Learning Channel’s new program called My Giant Life while holding Samuel in my arms. I chuckled to myself. I’m watching a show about women who are over 6’6” while holding a child with dwarfism in my arms.
Samuel didn’t mind one bit. He was snuggling in my arms happy as a clam. Watching the various challenges these women face like not fitting into a car or in averaged sized clothes, I contemplate the differences in my son.
Our little man is ten years old, 25 inches high and weighs in at a whopping 22 pounds which is the average size of a nine month old. His diagnosis is called Thanatophoric Dysplasia Dwarfism which Wikipedia describes as a severe skeletal disorder characterized by a disproportionately small ribcage and folds of extra skin on the arms and legs. His little chest fits in the palm of my hand as do his feet and hands. Wikipedia also states this condition affects about 1 in 60,000 births.
He is still small enough to bounce in his Fisher Price bouncer. Rue the day he gets too big for it. We’ll have to custom-build one for him. I can’t imagine him not bouncing. We believe the bouncer actually helped him to improve his breathing and contributed to Samuel getting off the ventilator.
He also still fits in his stroller, car seat, jumper and baby crib. No toddler bed for this little guy yet.
He does not grow out of his clothes very fast. In the last year, he graduated from 18 month onesies to 24 month onesies. We recently went to a wedding and purchased a shirt, vest, tie and pants in the size 2 Toddler. On the morning of the wedding, I used a pair of scissors to cut the pant legs and sleeves to fit Samuel. It looked great until I put on the vest.
It didn’t fit his tiny tire sized belly. That was a surprise, so we went vest-less.
Just a few months ago, Samuel started discovering the world of walking. Well, sort of. We place his favorite cereal high enough so he can reach for it. Stretching his cute little arms up, he grasps the delectable morsel between his fingers and pops it in his mouth. Then we place another to the left. He holds on and “walks” sideways grabbing the O shaped cereal. Is walking in his future? Inspired by his favorite cereal, we think so.
The best way to describe Samuel’s countenance is joyous. Watching My Giant Life I found it wonderful that cast member, Lindsay Kay Hayward, has chosen to embrace her height as a gift. Samuel too is a gift. He may come in a little package but his smile spreads sunshine where ever he goes. His countenance is best described by his former therapist, Nicole Shaffer.
Samuel is a reminder that odds don’t mean much, personal strength, faith and love is what makes the difference… every birthday is a miracle and I’m so excited that Samuel is a strong, vibrant 8 year old (now 10) with the largest, most loveable personality I’ve ever been lucky enough to encounter. Happy Birthday to the coolest kid I know.
Nichole’s words encourage me to view my son as a little boy with a larger than life personality. Do big things come in small packages? As a mom of a child with dwarfism, I think so.
What question do you have about Samuel living with dwarfism? I’d be happy to answer your questions. Who knows, your questions may appear in a future blog.
By Evelyn Mann
Author, A Miracle In My Living Room