Not The Worst Thing (Revisited)

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It has since brought me around again to my son's challenges and the way that autism affects him daily, what it means for his life, and what it means for our family.

You see, my doctors suspect that either A) I might carry a genetic mutation - other than the CF gene I carry - that is causing my children to have genetically-based conditions, or B) that the baby simply had a random chromosomal abnormality or genetic defect that made her condition incompatible with life.

In light of that theory, many well-meaning doctors I encountered  - who genuinely were trying to help me feel better with little words that would do it justice - repeated told me that "There is a reason why this happened, because the baby had something wrong."  Or the worst - "It's probably for the best."  I've heard it from family members and friends as well.  I don't hold a grudge about it, but it doesn't help.

It wasn't for the best.

It takes me back to the things I hear said occasionally about autism that make me cringe.  When they are said in the wake of an autism diagnosis, I try to overlook those indiscretions with the thought that these parents are simply overcome in their grief (and before I get attacked - yes, I believe that to accept autism, most parents go through a grieving process...very few people, if any, are happy to have their child receive an autism diagnosis just for the sake of having an autistic child...getting a diagnosis so you can finally get therapy/services and feeling that relief is a different story).  Hell, I am certain that I have said things over the past few days that have come from a place of hurt and anguish and - therefore - don't reflect my thoughts on a more clear-headed day.  Emotions betray us at times, shutting down our reasoning and logic - not unlike how they affect our autistic loved ones - and I have to respect that in someone facing their grief over a new and very raw diagnosis.

However, when a parent further on the journey says "I would rather have a child with _____ than autism" or "Autism is the worst thing that could ever happen to me", I can say with all confidence that they're wrong.

Yes, having a child born with a developmental issue, chronic disease, or disability is a scary prospect, but put yourself in my shoes.  It was never for the best that we lost Maggie.  NEVER.  I would have gladly taken her just as she was - "flawed" and "wrong " as others saw her and perfect in my eyes - rather than lose her.  I could have taken on whatever came our way, just as long as I had a baby in my arms.

Autism isn't the worst thing that could ever happen to me.  Losing a baby is.  With a loss, there is not progress to be had, no potential milestones to meet, and no barriers to burst through.  Rather, there is emptiness.

I will always think back to this when I feel challenged with Jack.  There have been so many times when I have said in the past that I would rather have an autistic child than a dead one.  I know now that my assumptions weren't wrong.  And I know that some people experience a different autism than we do - for better or worse - but I can say that I would take more challenges to be able to hold a living child in my arms.

Never again will I take this for granted.  Never again will I feel that it's too much.  It may seem so in that moment, but overall the challenges we face raising Jack are a drop in the hat.  I can handle meltdowns, communication challenges, and feeding issues daily.  

What I couldn't handle is losing him.