Over Long Health Journey, CaringBridge Becomes Family’s Blog
In January 2008, during a 26-week prenatal check, my husband, Toby, and I learned that the right femur of our future daughter appeared to be half the length of her left femur. Though we didn’t have a name for it at the time, we learned after her birth that she had an extremely rare condition called Congenital Femoral Deficiency. I would later learn this condition affects only 1 in 150,000 births.
Our Abigail Hope arrived 3 months later, a feisty redhead from the start. Little did we know how much Abby’s strong spirit would matter in what is now a 10-year quest for our girl to have two feet on the ground.
CaringBridge as a Constant
The journey would be long, as Abby’s predicted discrepancy at maturity was 11 inches.
But through major hip and knee reconstructions and leg-lengthening surgeries that are just as painful as they sound, Abby’s motivation and wish for independence continue to shape this challenging journey.
Before her first surgery, at age 2, there was a 4-inch difference in the lengths of Abby’s left and right legs.
And every step of the way, CaringBridge has been our constant.
Abby was a chunky-thighed little ginger when I started writing in July 2009. We were living in Texas at the time, where I was associate pastor at a United Methodist church.
Nine years, 468 CaringBridge Journal posts and a family move to Florida later, our girl is doing kids’ triathlons and running 5K races with her “helper leg” (an extension prosthesis).
She swims and is quite the young gymnast. She loves sewing and crafts and dreams of one day becoming a veterinarian. Right now, it’s all about horses, but there’s no animal that Abby does not find interesting.
Abby’s health journey also resulted in career changes for my husband and I. While her care in Dallas was wonderful, and our family had put down roots in Texas, we ultimately moved to Florida to be closer to specialists with the most experience and success in treating Abby’s very rare condition.
Roller Coaster of Emotions
No doubt, a move like this involved a level of sacrifice from our whole family. Toby and I had jobs we truly enjoyed, and leaving Texas meant starting over for our son, Charlie, too. It was not easy leaving family and church friends.
But relocating our family made it easier for Abby to become a patient at the world-renowned Paley Orthopedic and Spine Institute at St. Mary’s Medical Center. Their specific expertise is in limb-lengthening and deformity-correction of extremely rare conditions.
When we moved to Florida, I became a patient and family care coordinator at the clinic. I miss the local church ministry, but each day I am blessed to share my passion and love for children and patient families just like ours.
From our personal experience—Abby had her seventh surgery in July 2018—and from working with other families from around the world, I can tell you that deformity-correction and limb-lengthening is a roller coaster of emotions.
Abby hula-hooping in August 2018, shortly after a surgery expected to reduce her overall leg discrepancy by 2 inches.
You weep, you worry, you feel guilty. You wonder if you have chosen the right path for your child. But with each improvement comes celebration for a hard-won victory.
Keep Our Eye on the Prize
I see, too, that God gives you the right people in your family and friends with wisdom and assurance when you need it most. These people remind us to keep our eye on the prize.
Like most families in the midst of health journeys, we are blessed to have an incredible medical team and a physical therapy team, in Abby’s case. It truly takes a village to gain every centimeter of new leg-length.
I have seen the power of our village through nine years of writing on CaringBridge. My family is so grateful for all of the love and support that still carries us. Even so far away from family in Texas and also Oklahoma, we are connected through CaringBridge. Abby’s site is followed by friends from across the United States, and the world, who offer their prayers.
Our Abby is now fully entrenched in fifth grade, and excitedly serving as a safety patrol for the little ones. So hard to believe. Where did our baby go?
We would like CaringBridge to be our daughter’s record of the thousands of prayers that have been said on her behalf, and the calm words of love and support that keep us going. So I still write.
The other day, our son, Charlie, an eighth-grader, asked me, “Mom, how long do you plan on keeping this up? Will you write until Abby’s leg-lengthening is complete?” I answered, “Maybe I will keep updating CaringBridge until she marries and has kids!”
New to CaringBridge and Wondering What We Do?
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health crisis through the use of free, personal websites. Know someone who could benefit from starting a CaringBridge site to keep loved ones informed and get the love, and support they need?
Jennifer Scott, wife, mom and ordained deacon in the United Methodist Church, has been writing on CaringBridge since 2009. She hopes that the surgery Abby had in July 2018 will be the last one for 4 to 5 years. The dream is for Abby to have both feet on the ground after a final leg-lengthening surgery at maturity.