Julie had been receiving excellent orthopedic treatment for her legs/feet and finally reached a milestone- she had to grow before the castings could be continued.  I recall the relief we felt… we reached a “milestone.”  Whatever that meant we were excited!  No more sponge baths for Julie…no more screaming appointments with the sound of an electric saw being drowned out by the crying episodes of a scared child. We assumed that we could establish a new state of normal for our entire family.

Although the casts were off, Julie’s feet/legs had to be stabilized as she continued to grow. She needed to wear leg braces to keep her feet/ legs in position so she could ambulate without the support of the casts. I never knew leg braces could be so small. Julie was fitted with the tiniest open-toed leather shoes which anchored small steel braces on either side of her legs. They were attached to a leather strap which wrapped and buckled around the top of her tibia. The entire length of the bracing was approximately 3 inches-her legs were very short. I still have that first pair of shoes and braces. They were impossible to keep white and, at first, I took pride in polishing.them. Clearly, that was an impossible task. Julie scuffed along and was not able to ambulate as a non-braced child might walk. Her gait was stiff and the soles of the leather shoes did not bend.  Miraculously Julie did not need crutches for support. That was amazing given the nature of her spinal deficit and lack of muscle development in her lower legs. Fortunately, her upper legs became her power source. Those muscles were strong and becoming very well developed in this compensatory role.

In order to establish and maintain a healthy gait, Julie needed physical therapy which was provided at the Crippled Children’s Center in Columbus, OH.  At the time, the Crippled Children’s Center (the name was later changed to Easter Seals Center) did not accept children into their program as young as Julie.  Julie needed to participate in their early childhood program to continue progressing.  Somehow with the help of her orthopedist and a lot of prayers the door opened and Julie was accepted into the early childhood program under the age of 2.

I remember Julie being transported in a small van labeled “Crippled Children’s Center”. She was strapped in her tiny seat barely able to look out the window and driven about 40 minutes to participate in the early childhood program three mornings a week.

The program included physical therapy, hydrotherapy, and occupational therapy. Julie also socialized with lots of other older children during their therapeutic play sessions using toys which challenged them physically while strengthening their bodies.   October 1976, Julie received a trophy entitled “The  Best Foot  Forward”  award and had her picture taken for the monthly newsletter. She was only two years old but even then was a determined and strong-willed child. She worked hard for that award and often came home exhausted with dark circles under her eyes but always radiating a spirit of exuberance and joy.

Julie was only two years old and interacting with a group of staff members several times a week who  provided these services for her.  She did not have the security of her mom at her side or her twin brother who shared a very special bond.   Julie’s verbal skills excelled as she was called upon to communicate 1:1 in these new situations. She was forced to become more independent and confident as she was participating in the program.  Julie was blossoming but I had a difficult time “letting go.”

It was VERY difficult to put Julie on that little van and wave good-bye to her- she was sitting in a seat almost below eye level of the window.  I spent many tearful moments in the driveway waving after the van pulled away AGAIN trusting that this was in Julie’s best interest.  This opportunity was needed to help her become the independent and strong person she needed to be.

Fortunately, the Crippled Children’s Center had a very active Parent’s Group which we participated in regularly.  It was run by a social worker who taught us life skills for coping with the ongoing challenges of raising a physically disabled child.  We also learned how to equip our children with skills to help them normalize outside of the center.   We also socialized with those families and helped each other in so many ways.

Life was busy at home despite Julie’s absence. Charlie had some special 1:1 time with me. He continued to be the sweetest and most gentle child.  He was happy but couldn’t understand where his twin sister disappeared several days per week. He was my only son and I learned quickly in his case how differently he played from his sisters. He loved taking anything apart and fortunately Fisher Price was rather indestructible at that time!

Charlie & Julie – “Double Trouble”

Don’t forget Julie was a twin and that was another interesting dynamic to experience!  Before I brought Charlie and Julie home from the hospital I was told about the local Twin’s Club and given contact information.  Once I had a spare moment I called the contact person and INSTANTLY had support from other mom’s surviving the task of raising twins.  Interestingly, I was the only mom who had a special needs twin.  It really didn’t matter…we talked on the phone and shared stories, clothes, toys and made this aspect of life feel more normal.  Back in the early 70’s twins were quite a novelty, so the organization served such a beneficial role in our lives.  I remember many large grocery chains providing discounts for baby food, formula and diapers to members of the Twin’s Club.

When Julie wasn’t at the center I often got together with other mom’s and their twins and all the kids played together. It gave Julie an opportunity to play with other children who didn’t have braces or walkers or wheelchairs.  It also gave these children an exposure to someone with leg braces. I do not recall any reaction from those children toward Julie and her braces.   Those social interactions also gave Charlie and Julie the opportunity to play with other twins and be what they were- fraternal twins playing together with other twins. It was fun to watch the double trouble in action!!!   Julie and Charlie strengthened their special twin bond and even at that early age Charlie was becoming a sort of protector towards his twin sister.  His precious gentle spirit was developing into an intuitive protective brother.

________
This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this post, Charlotte describes what it was like to raise twins, one with a serious congenital physical disability requiring continuous on-going interventions from the health care system.  In her first post, Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time,  Charlotte writes about the early years.  In this post, she picks up Julie’s story starting at about age two.   (If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series.)  Pat

Links to the other posts in this series:

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

“Oh We’re Not Going to Take It Anymore….”

4 COMMENTS

  1. The two of you are really excellent communicators telling an exciting and challenging series of experiences. Lots of strength and faith show how well you have coped.

  2. Although I am Julie, the daughter I have to say that my Mom, Charlotte continues to reveal how much of a rock she is. My whole life she has been and hearing the details of her experiences gives me insight to our whole family, my twin and my relationship with Mom. Mom and I have always been so close. I can’t imagine putting a 2 year old on a van back in the 70’s but am so glad she and Charlie, my twin, had those prescious moments. I love my Mom more than words.
    Julie Hemker

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