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“With this level of brain injury, children often don’t develop past 6 months.” our neurologist explained when we were called into a conference to discuss Sawyer’s infantile spasms.

She was surprised that not a single doctor in the NICU had wanted to explain to us what his brain injury meant. It was all very vague and “we don’t know” “some sort of cerebral palsy.” It wasn’t until our we met with a new neurologist that she explained what his brain injury meant. I understand now why they were so vague.

Hope is easy to lose and hard to gain. It is something inside us, a feeling, of trust that something will happen. As a parent or caregiver of a child with special needs science is what drives many decisions, but hope isn’t something that can be measured.

When a parent’s hope for their child is taken at such a young age it can so easily change the outcome of their lives. If a parent is told their child will never walk, will they fight every day to change the outcome or will they accept it? There is no wrong or right answer because parents of special needs children each have their own unique journey.

The same neurologist that told us the outcome of his brain injury was the same one that said, “Research shows that if a child can roll from back to belly by the time they are four, then they will walk someday.” Just after Sawyer’s fourth birthday he did just that.

He surprised us and rolled from his back to his belly all on his own! We were so excited to see him hit this milestone. He has consistently amazed us with his perseverance and willingness to keep trying. This year alone he has tackled riding his trike independently, driving his own jeep, taking consistent steps in his kid walk and even spinning himself in his kid walk to roll down the driveway.

Hope is a wonderful feeling that we are so fortunate to feel. It helps us achieve more and get through tough times. We have seen first-hand how continuing to have hope can have a positive outcome in our child’s life. Continue to Hope and continue to smile, because they are some of the only things we can control.

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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