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Four isn’t just a Number

Four isn’t just a Number

Sawyer and Quinn turned four on the 16th of May. It’s easy as a parent to reflect on the past when your child has another birthday. I found myself looking back through photos and videos and remembered a conversation I had with the neurologist shortly after Sawyer was diagnosed with infantile spasms.

As we sat in the room looking at the scans she explained that Sawyer was having seizures and how we would control them. She also explained the brain damage that he had and what to expect. She asked if anyone had explained to us before the level of damage he has and what kids with injuries like his typically are like.

We may have been told but all we remembered were the NICU doctors explaining that he would have some sort of cerebral palsy and not knowing the future.

We did not remember anyone explaining to us the level of injury or what we could expect.

She explained that Sawyer had severe damage to both his right and left hemispheres. She said what she often sees is children with this level of brain injury do not develop cognitively or physically past 6 months of age. I want to say that we cried and we were devastated but in that moment we were just pushing for his survival and to get past the seizures.

This was just another diagnosis for us.

In fact, I didn’t remember we were told this until 3 days ago. I don’t know if this was God’s way of protecting and comforting me or my way of coping but either way, I know faith had a role.

We have never let that number stand in our way or define Sawyer.

He has continued to grow and develop, and we are finding how intelligent he is. He had a trial with an eye gaze board which tracks his eyes and speaks for him. Sawyer was able to identify everyone around him and begin telling us things he wanted.

We always knew how smart he was but this was proof for all of us. Sawyer still isn’t walking but he is taking steps in his gait trainer. He rides his bike by himself and on his birthday, he figured out how to control his very own jeep, with a parent steering of course (HAHA!).

The one thing our family lives by is “never set limits”. Believing your child can reach their absolute potential and giving them the tools to do so is one of the most important jobs as a parent that we have.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Francie Khalaf

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I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons.

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