Do Big Things Come in Small Packages?

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.

The Numbers

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.

Space

Bouncer Boy
Bouncer Boy

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.

 

 

Clothes

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.

Vest-less
Vest-less

It didn’t fit his tiny tire sized belly. That was a surprise, so we went vest-less.

Getting Around

Reaching for the....cereal.
Reaching for the….cereal.

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.

Countenance

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

A Miracle In The Making

August 6, 2015

One Child, One Miracle, Hope Lives

August 6, 2015

8 Thoughts on Do Big Things Come in Small Packages?

  1. Hi! I love your openness! I have a son with a severe intellectual disability. He has fragile X syndrome. I’m always curious if children like your son have normal intellectual development? If so and he understands his condition, how does he feel about it? does he attend school?

    Thank you!!

    Reply
    • Hi Cheryl, Thanks for your questions. Does my son have normal development? Not the same as a typical ten year old. Though his teachers say he’s very aware and interactive. He is non-verbal and does not go to school but participates in the hospital homebound program. We have some wonderful teachers and therapist working with us. A doctor once told us that Samuel will grow and learn at his own pace. That he will show us when he is ready for next steps. As a special needs mom, I’m sure you can relate. I’ve heard of fragile X. Do you have a support group of other fragile X moms?

      Reply
  2. How lucky you are to have such a wonderful boy, and how lucky is he to have you as his mom.

    Reply
    • Hi Megan, I am blessed to have a full of life little guy. I have a secret though. God has kept me strong through it all and given me an amazing husband who gives me so much support everyday. Thanks for your comment… I look forward to reading your blog. Fun that we can share each other’s stories this way, isn’t it.
      Smiles, Evelyn

      Reply
  3. I just stumbled across your post in one of the Facebook blogger groups and wanted to come by and say hi. After reading this post I had a tear, but by the end, I had such a huge amount of love and joy in my heart. It is not easy putting your life on the Internet for the world to see. While many are understanding and compassionate, there is also the darkness where people are just cruel and hurtful.

    I want to thank you for sharing Samuel. What a handsome fella and that smile looks like it lights up a room. Adore that pic of him in the tie.

    I look forward to reading more of your posts.

    Reply
    • I so appreciate your comments on my latest blog. I can tell you have a sweet and tender heart having a tear added with joy after reading the blog. I look forward to viewing your blog too. Thank you for taking the time to share your heart with me. Look forward to following each other’s journey. Blessings, Evelyn

      Reply
  4. So handsome in his purple shirt & tie! I’m a former special ed teacher turned SAHM (I used to write a special ed blog, now it’s a foodie/mom blog). Looking forward to following your journey through your blog (bookmarking now).
    Alison

    Reply
    • Thanks for bookmarking, Alison. So glad to have you join the journey. I’m sure you have lots of advice to offer too. Look forward to viewing your blog too. Blessings, Evelyn

      Reply

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