There Is No 'Better' or 'Worse' When It's Your Child

Diseases and disabilities, illnesses, special needs, challenges, they are not a contest. There is no worse or better. There is only love. And parenting. And heartache. And joy.
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It goes something like this: "I feel so helpless. Johnny now has to have surgery and he was just starting to make some progress in therapy and at school."

You clearly have concerns, legitimate concerns, over medical or developmental or educational challenges for your child.

But then it continues, "I mean, I know it's nothing as bad as what you're going through and what your son has had to face...." (She's talking about my son with the rare, terminal, degenerative disease called Hunter Syndrome.)

I generally stop her right there.

Diseases and disabilities, illnesses, special needs, challenges, they are not a contest.

There is no worse or better. There is only love. And parenting. And heartache. And joy.

I'm sure there are people who disagree with me. It's so hard to see our children struggle, for life, for learning, for acceptance. And our instinct is to compare.

Is it hard sometimes to see children do things that my son can't? Absolutely.

Do I feel guilty sometimes that my son is in a clinical trial and doing better than most children with his disease? Every single day.

But I also have two fairly neurotypical children (I hate even really categorizing, one actually has ADHD and a seizure disorder, but neurotypical is broad when you have one with substantial needs). Parenting them is just as hard and just as painful at times versus my child with substantial learning and medical needs.

It's just different.

In fact, watching one of my "neurotypical" children experience his first seizure at four was one of the most traumatic parenting moments I've known.

We were watching TV on a normal evening. His eyes rolled back. He went limp. It takes a moment to register, doesn't it? When you're not expecting something terrible to happen in your otherwise normal, suburban life?

My world stopped. I moved in slow motion, in the fog where time and reason stand still. "He's having a stroke," was my first thought. There were no convulsions. For eight minutes, the longest eight minutes of my life, my son was absent from his limp, lifeless body.

The screaming inside my head was so loud, I could barely hear the 911 operator suggest that it might be a seizure as my husband carefully laid him on our kitchen floor.

That panic was familiar, an echo from two years earlier as I laid in a hospital bed, water broken, with a 32-week old child in my swollen belly. I could hear the doctors whispering outside my door as I struggled to feel movement of a child I thought I was months from meeting.

His room was blue. His curtains were not yet hung. We had no clothes for a three pound baby. His sixteen-month-old brother sat downstairs in the waiting room of the ER with a family friend.

Did I ever think that my three children would each have their own unique story of medical challenges? Do any of us expect what parenting may hold? I had bought the lie. That we grow up and have the perfect little life tied up with a bow.

No one has that life. I don't care how it looks on the outside.

Some might wonder which situation was harder. More difficult to accept, to process. But there is no harder or easier story in our family. The pain from one's surgery or hospitalization, one's diagnosis or struggle to fit in at school is not greater or less.

Love is not a greater or less than proposition.

So before you compare your child's challenges against those of other kids, or compare whether parenting your typical or not-so-typical child is harder or easier, just remember:

When it comes to our kids, their health challenges, medical challenges, learning challenges, social challenges, there is no better or worse.

There's just different.

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