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Challenge: Kids with Special Needs

My little girl? She’s Just Special. I’m the One with Needs.

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My child’s special needs don’t define her.

But for a long time, my shortcoming and “special needs” defined me.

Until my daughter’s diagnosis, I was vaguely aware of my lack of patience. My Type-A personality drive for perfection? I owned that label, and proudly. Our daily schedule was laminated and hung at a 90 degree angle on the refrigerator door. My neatly formed 5-, 10-, and 20-year plans? Saved on my laptop, ready to be realized at the precise moment I’d planned them and not a minute before. I relished the satisfaction that came with planning, organization, and punctuality.

But there were more serious offenses. I was a decent friend, but I had no idea what it meant to be the type of friend who drops everything to meet you in the ER when your child is admitted. I had never considered what life looks like for a parent raising a child with special needs. Sure I felt badly when I saw a parent maneuvering a wheelchair, but after smiling sympathetically, it was an out-of-sight, out-of-mind situation. Truth be told, I was supremely unaware of my lack of compassion – true compassion – for the special needs population. And then my daughter almost died.

When her medical team discharged my child at 4 months old with three rare disease diagnoses and two chronic disease diagnoses, my “special needs” became painfully clear. Not only would the path ahead for our family be lined with the resources and experts we would need for our daughter’s future, but I would have to stare hard into the mirrors that would be held up at each checkpoint along the way. And my reflections? They weren’t pretty.

In the last eight years, my husband and I have figured out how to navigate the mysterious world of rare disease research, treatments, and advocacy. We have tracked down the world’s best researchers, physicians, and resources for our daughter and we’ve built a unique medical team. Compared to others who wait endlessly for diagnoses and treatments that never materialize, we know how good we have it.

But miraculously, in that same eight years, a different class of specialists from all over the world held my hand while I figured out my needs.

The child life specialist who stuck by me while a team of six tried time and again to place my daughter’s IV? She turned out to be my compassion counselor.

The physician dad who sat next to me in the radiology waiting room at the National Institutes of Health and comforted me, calming my fears about my daughter even as his son had another PET scan? He was my heart specialist.

The 14 year old girl at the medical conference who took the time to reassure me when I questioned what my daughter’s future might look like? She gave me the gift of hope and the promise of the unknown.

And the nurse practitioner half a country away who kindly responded to every email I repeatedly sent, begging for the results of my daughter’s tests? She was and continues to be not only my medical rock, but she has managed to instill a sense of patience and calm in my impatient heart.

There are more. So many more with names and faces that appear at 5am for emergency ultrasounds, in quiet therapy rooms filled with the deafening silence of “what ifs”, and in crowded hospital hallways with a cup of coffee in one hand and a plan of action in the other.

Physician or layman, each and every one of these amazing people change our lives in innumerable ways. They support us, they guide us and sometimes, they lead us. They model optimism, perseverance and all of the other things we as special needs parents must learn to be successful on this very crazy, very special journey. More than anything, they show us our kids are more than a diagnosis, more than a question mark, more than a medical file – they are amazing little people built to take on the world and teach us all how to leave it just a little bit better than we found it.

Because my little girl? She’s just special. I’m the one with needs.

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