Growing In Slow Motion: Thanatophoric Dwarfism

How long does it take for your child to grow out of size 6 months, 12 months, 24 months and toddler clothes? Do you feel as if you are buying new clothes every half year because your child is growing so fast?

Thanatophoric Dwarfism Clothing
Rocking His Size 3T shirt.

This is a dilemma I do not face. My son’s growth spurts are few and far between. At ten year’s old, he is wearing toddler clothes. As a mother to a child with Thanatophoric Dwarfism, I am watching my son grow and age in slow motion. It seems he is holding at 25 inches long and 25 pounds.

My husband’s friend, Thomas, who hasn’t seen Samuel for a year, recently came to visit. He was amazed by my son’s progress. Perhaps not by his clothing size but in subtle ways that makes this Momma proud.

One night, Thomas waved to Samuel. My wee one usually does not acknowledge this gesture or the person offering it, but lately, we have seen a change. On this night, Samuel turned to Thomas, gave his biggest smile until the laugh lines lit up around his eyes. His dimples appeared and he basked in his new friend’s attention.  I watched in awe and joy.

Thanatophoric Dwarfism Child Makes A Friend
Thomas Tickles Samuel

Then, today Thomas was tickling Samuel, and he laughed in delight. Now, this might seem inconsequential but as a special needs mom, I revel in this growth. My son is interacting with others in a meaningful way. He is building a friendship recognizing someone besides Mommy & Daddy loves him.

There are people who love Samuel and interact with him. Many from church, family, friends and school teachers have a special relationship with my son which touches my heart. What is different with Thomas is my son doesn’t see him everyday. He developed a rapport with my son in a short time. Samuel made a new friend.

Along with his clapping, blowing kisses and getting into all kinds of mischief, I’d say my son is growing up. Yes, it may be in slow motion; but, I’m enjoying every joy filled moment.Growing In Slow Motion: One Child's Journey With Dwarfism Click To Tweet

Thanatophoric Dwarfism Child Between Drawers
Getting Into Mischief

What is next in my son’s growth either physically or developmentally? Only time will tell. In the meantime, I will continue to watch my miracle thrive.

What milestones have your children surprised you with recently? Share your comments below. I read each one.

Written By: Evelyn Mann

Author, WIP, A Miracle In My Living Room


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2 Thoughts on Growing In Slow Motion: Thanatophoric Dwarfism

  1. My prayers go out to you for being so brave to share your journey with us. I also have a child who had difficulties when she was younger and believe in the power of prayer and of miracles. Because years later she is thriving and moving forward to a degree that I never expected. Life is full of ups and downs and I believe we are given these special children to make us better people in dealing with them and all the boundless love they have to give.

  2. Such a beautiful smile! It seems like all boys love to get in to mischief at all ages. My heart goes out to you!


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