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A step in the right direction

A step in the right direction

An old saying that has resonated with me time and again is “One step forward, two steps back.” Progress, when you have a child with complex special needs, is something you strive for.

It’s truly magical when you see your child’s hard work paying off. Steps forward need not be giant leaps…we celebrate them as they come, and we’re grateful to witness even the smallest strides in growth.

As excited and fulfilled as I am when my daughter has a breakthrough in development, I can’t help but worry about potential setbacks. They tend to come along and knock us back when we least expect them.

In my eighth month of pregnancy, I was given grim news.

A perfectly typical pregnancy drastically changed into weeks of worry and fear from one ultrasound.

Afraid that my unborn daughter’s anomalies could take her from us, before we even had the chance to hold her, my life was quickly spiralling backwards. When she arrived safely into the world, full of breath and life, thankfully, we leapt forward.

Despite weeks in NICU and very slow and steady weight gain, we were forging ahead. I was beginning to feel that we had jumped a major hurdle and were on the home stretch.

Then, out of the blue, a phone call delivering the news of a rare genetic disorder caused me to stumble.

Before ever laying eyes on her, I knew that my daughter was a fighter and a miracle. Knowing her genetic disorder and brain structure put her at risk for seizures, she had her first EEG performed at nine months old.

The electrical activity in her brain was normal, and there was no need for anti-epileptic medication. We were victorious. However, to our heart breaking dismay, that victory was short-lived.

One month later, she had her first terrifying tonic/clonic seizure. My world stood still.

After an ambulance ride, a hospital stay, new medications, and a whole new world of fear, I felt that we were again moving backwards.

Today, she’s currently eight months seizure free.

Even though this is a monumental win in our ongoing Epilepsy fight, the constant worry is always there. We steady ourselves and hope to continue moving onward, with unwavering steps.

After major reconstructive hip surgery, years of intense physical therapy and countless hours of practice at school, my daughter learned to walk with a walker!

With the proper orthotics, we knew these mighty steps of hers were giving her some much loved independence.

Over time, her right foot began to turn inward. Walking is much harder when one of your feet is uncooperative; it takes extra effort and exertion on her part to correct it.

We are determined to figure out the root cause and to fix it. Motion analysis testing is in her near future. This step backward, and any treatment that is needed, will not bring her to a halt. Since her birth, almost nine years ago, our family has become STRONG.

She has taught us that lying down and giving up are never an option.

She has persevered through storms that most people can’t begin to imagine; always with a bright smile on her beautiful face.

When things get tough and we’re knocked back a few steps, we simply have to catch our breath and push on.

I’ve gained strength that I never thought possible, because of my daughter.

When she entered our lives, we didn’t know it yet, but we’d all soon take a step in the right direction. We’ve learned that we’re all capable of so much more than anyone can predict.

Our hearts are forever changed because of her, for the better.

We’ll keep handling all the stumbling blocks that may fall onto our path.

Although it may take us twice as long to get there, the view will be breath taking as we travel on this journey together.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

View Jodi’s Profile

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