I'm Not "OK" -- A Mother's Testimonial

fam21.pngIf you’ve ever been in a hospital, you have heard machines chiming. The ding endlessly reoccurring until a nurse can tend to it. The NICU is no exception--if anything it’s tremendously louder with each ring. Each little life fighting so hard, and in the left-back corner is my son also fighting for his life.

It was nearly impossible to find the right words to explain what was happening. We held on to hope through the moments of frailty and uncertainty. That was our only solid ground through months of surgeries, intubations, needle sticks, lumbar punctures, and blood transfusions.

Each day was a gift, and we never knew what the outcome would be. Our other two kids struggled with the rotations my husband and I took between hospital stays. We lived in this chapter for four months until our son was discharged at just six pounds. He was sent home with a nasogastric tube for supplemental feeding and a colostomy bag. Little did we know that we would come home after every surgery and hospital admissions with new equipment.

Even with my son’s conditions, our gratitude for life outweighs any other negative times we had. The joy gained from the growth we experienced as a family cannot be measured. It is irrefutable and unexplainable. I’m so thankful for Kentucky Children’s Hospital and Medicaid. Our family relies on Medicaid to support my son’s medications, supplies, and care from numerous specialists. Without Medicaid, I don’t know where we would be.

fam23.jpgParenthood is always a challenge, but caring for a child with a chronic illness or disability can be especially draining. So, I began trying to think of tangible ways I could help those in my community. I wrote a book. I created a website. I spoke at local Medicaid open floor meetings. It has all been my new mission.

I challenge you, whatever place you are in your chapter of your life book, to evaluate yourself. Please stay home to protect kids like my son during the COVID-19 outbreak. What if it were your child? How can you help flatten the curve?

I will continue to try and learn from new challenges thrown our way. I will continue to hold up others whenever I can, and you can do the same.

Be safe, friends.

As a mother of two special-needs children, Heather told her stories in I’m Not “OK” to help others in her situation and foster a strong and powerful community of caregiving parents.

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