Additional Needs

Will We Ever Be Out of the Woods?

Posted by Jodi Shenal on 26th June 2017 Additional Needs, Advice & Support, Disabilities

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There is comfort and contentment in resting after climbing an arduous mountain.

The mountain, in this case, was when my daughter endured complicated and painful hip surgery at five years old.

Bilateral Varus Derotation and Dega Osteotomies to be exact.

Congenital Hip Dysplasia is a condition that accompanies her rare genetic disorder, and these procedures were done in hopes of preventing early onset arthritis.

Once she had crossed over this great obstacle, gotten past the pain, healed and had finally overcome all the setbacks, we thought we were out of the woods.

She worked hard to recover and to regain the skills that she had lost.  With time, she was crawling again and able to bear weight again in a stander.

While she has yet to take her first independent steps, together, we work hard towards someday making this dream a reality.

With mighty determination and strength, she took steps in a gait trainer, all by herself, 17 months after her a surgeon transformed her hips.

For a moment, the woods were far behind us.

We feared going back into the woods when she had to have the plates and screws removed, 10 months after the operation.

It was an easier procedure, and we knew going in that the recovery would be a breeze compared to the first time.

Nonetheless, the feeling of leaving your crying child in the arms of a surgical team is heartbreaking and terrifying.

Thankfully, she sailed through, fought like a warrior, and bounced back quickly the second time from the setbacks. Finally, we could move forward again.

This time, we brushed ourselves off, confident that we’d never have to trek through those woods again.

We met every post-operative appointment hopeful; and were always encouraged when everything appeared perfectly in place on the x-rays.

We would leave the surgeon’s office gleefully after each visit, reveling in good news.

The woods had become a distant memory, until our most recent post-operative appointment. The x-rays are no longer perfect.

There is yet another procedure she may have to withstand.  While our surgeon is world renown and has her best interest at heart, we await a panel discussion of her case by other orthopedic professionals.

The decision of whether or not to have it done would be much easier, if we had a crystal ball.

Do we put her through more surgery if she may never walk independently?  Do we put limits on her and deem it unnecessary?

My gut tells me we need to give her every chance possible, yet my heart aches at the thought of causing her more pain.

We have found ourselves right back where we were 18 months ago, scared and alone in the woods.

Parents of children with special healthcare needs and disabilities live our lives on a roller coaster.

There are many ups and downs, and surprises at every turn.  There are thrilling, breathtaking twists and there are devastating, distressing ones as well.

As other parents on this path can relate, we know that we will never quite be out of the woods.

Therefore, we must learn how to survive there, and arm ourselves with all the right tools and resources, to help us make the best decisions for our children.