Why Me? Of Course Me.

"Why me?" is an almost universal question asked by many parents of children with special needs. These are two powerful words that can spur strong responses of spirituality, admiration, self-pity and sometimes hate. They can launch an introspective journey of self-improvement, or trigger a downward spiral into depression.

For better or worse, I have avoided those two words for many, many years. I tried not to ask "why me" when my first child was diagnosed with a medical disorder in utero, nor did I ask it when my second child was diagnosed with autism (seemingly overnight) when she was 15 months old.

In fact, quite the opposite. I never really expect things to go well. I feel like I'm often waiting breathlessly for something to go wrong. If all is well, THAT'S the time I ask, "why me?" and "why now?"

I do believe myself to be a genuinely good person. I like helping others when I can; I try not to hurt people; and I have never been convicted of a crime beyond a parking infraction. However, I often can be self-critical and will take things personally way more than I reveal. So, if I really wanted to ask myself, "why me?" I am sure I could come up with many, many, many reasons - most of them completely nuts.

However, I am too busy and too practical to head down this path. I am solutions-driven, and the "why me" exercise would be quite the opposite. Not only do I not have the time to dwell on that, I recognize the danger in it. It is seductive, yes, but somewhat self-indulgent, and I know I am weak. I sometimes joke that I would suffer from depression if I had the time. I am secretly envious of rock stars who get to check into hospitals to recover from "exhaustion." To me, that sounds like a luxury vacation!

But really, as the parent of a child (or children) with special needs, what's the point of asking "why me?" (Of course, I mean this in the spiritual sense. I absolutely encourage people to see geneticists, neurologists, endocrinologists and internists if there are actually medical answers to this question!). We have too much else to occupy our minds, bodies and hearts.

However, I heard something last week that has completely changed my perspective. I was at the funeral of a child. The first and hopefully last. It wasn't necessarily an "unexpected" death. She was diagnosed with a degenerative, genetic disease at age 2, and lived far beyond all expectations, to the age of 9. However, that certainly didn't diminish the gravity or tragedy of the moment. An older brother spoke, as well as both parents. Keep in mind that this child has been completely dependent on her family for years, unable to do anything - except love them - without assistance.

Here, I will paraphrase what her grieving father said in his eulogy, commenting publicly on the "Why us?" question we all dread.

"Why us? Of course us. Because who would love her more than us?"

Those simple words touched me deeply. Perhaps someone else could manage these kids of mine better than I. Perhaps you, on the outside, might look in and judge my actions...or whisper among yourselves while my daughter tantrums in the parking lot. But I assure you, I am the right parent for these kids. Because I know, with my heart and soul, no one would love them more than I.

Which leads me right back to...Why me...why should I be so lucky?

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