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Health & Fitness

A World That Most Don't Know Exists

I went kicking and screaming into the world of a medically complex child, a world few know exists, and came out the mom of a child that changed my life and quite possibly the world.

Yesterday marked 11 months since my six-year-old daughter passed away. It was one of the hardest to endure emotionally in all that time. My guess is that because it was the last "month" anniversary that will happen before the "year" occurs; that we have gone through almost an entire calendar year; that we have cycled through all of the seasons; and yet, she is still gone.

Life and death are curious things. We tend to shy away from talking about or even thinking about death. But it's something that occurs everyday, every hour that we live. We only have to deal with it when it rears its ugly head inside our circle of family and friends. And even then it's not welcome and definitely not accepted.

Children with major medical problems have a similar plight. With tubes coming out of them, braces to help them walk or stand, wheelchairs to transport them, and machines to help keep them alive, we tend not to want to think about that reality and only really deal with it when its a child in our circle of family and friends. And then we question, "Why this child?" "Why did this happen?" And pity the child and the parents.

You see, I didn't know much about this kind of life - a life with a medically complex child, a child with a rare genetic condition, a child with special needs. But Ainsley changed all that. She opened my eyes to a world I entered kicking and screaming, fighting every step of the way. Not my child, I would cry!

But once I took a breath. Once I saw the unconditional love she could give. Once I saw her determination to be just like any other kid. I opened my eyes and was catapulted into a world no parent wants to see. A world most people never experience. A place most of society doesn't really even know exists.

There is an entire community of parents with children with complex medical conditions. Living life in and out of the hospital. In doctors' offices multiple days a week. At therapies. At school IEP meetings. At pharmacies. Spending more time in a week on the phone with insurance companies, medical supply companies, medical offices, pharmacies and nursing agencies than most people do in a lifetime. Doing all of it just to have a better quality of life for our child.

You see, we don't think about what camp we will need to put them in during the summer, or what extra curricular activities will not conflict with each other. We don't argue with them over what they will wear or staying seated at the table during dinner.

Instead, we hope they will see their next birthday. We wish they were able to play outside anytime they wanted. We pray they will not be hospitalized during the next holiday. We shun the thought that their lives are likely to be cut short.

I was honored to have been Ainsley's mom for six years, 11 months and 26 days. She taught me more during that time than I learned the rest of my life. She inspired me to help other children like her and to speak up for all of them. I know her life was not in vain and I pledge to honor it by helping the others that are still here.

That doesn't make yesterday any easier. But on April 27th you should consider coming to Dare to Dash in Downtown Historic Norcross to meet some of these amazing kids - many friends of Ainsley - who have similar struggles everyday and only hope to have the best quality of life that they can. Meeting them and seeing them smile and giggle and be kids despite the medical issues they have been dealt will change your perspective, and quite possibly even your life.Β 

Dare to Dash is a chip-timed 5K, 2K fun run/walk, and huge family fun day benefitting the Ainsley Paige Higgins Dare to Hope Foundation, Inc. and the palliative care team at Children's Healthcare of Atlanta. For more information, to register, or to volunteer, go to this website.

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