I Thought It Would Be Hard

Captain Snuggles

I thought it would be hard to do this one-post-a-day thing, but I find myself with an abundance of material.  Sure, it can be hard to find the time to write, what with a full-time job, a long daily commute, and the whole parenting enchilada.  But I find that the key element is having the seed of an idea in my head.  If I have that to start from, the words flow easily.  To be fair, these are early days, and I’m only one week into this challenge.  A month or six months from now I may be singing a different tune entirely.  But for now, I’m finding this OK.

I thought it would be hard to run a half-marathon.  I was overweight, unfit, and didn’t feel capable of walking down a flight of stairs.  But I planned and trained, I lost weight and got fit.  I still thought it would be hard, because you know, thirteen miles is thirteen miles.  I reasoned, though, that this was two and a half hours of running, of merely putting one foot in front of the other.  Compared with what my son George has to endure, trapped in his world of autism, day in and day out, two and a half hours of running didn’t seem to be too bad.

I thought it would be hard to be a special needs Mom.  I remember sitting in the doctor’s office, receiving the diagnosis, listening to the doctor tell us everything that George would never achieve (some of which he has, in spectacular fashion, since accomplished).  I thought that parenting my beautiful boy would be a lifetime of challenges and heartbreaks.  And yes, there is some of that.  There are days when it all seems too much, when I want to ask the gods of fate why they picked me to fulfill this extremely challenging role in the life of another human being, one who needs special care and attention.

But when I compare that to what some other parents have to go through, it doesn’t seem too bad.  About fifteen years ago, I attended the funeral of a seven-year-old girl who had died from a diabetic complication.  My fiance’s cousin lost his seventeen-year-old son to cancer a little more than a year ago.  Witnessing parents burying their children is awful.  It’s the saddest thing in the universe.

My friend Amy – someone I met through the magic of the Internet just a couple of months ago – is watching over her son David, a.k.a. Capt. Snuggles.  The Captain has a genetic disorder that three of his brothers were also born with.  Nathaniel had just five days on earth before this disease – Citrullinemia – took him from his parents.  Jonathan and Zachary received transplants to “cure” them.  David received a transplant as well, but he is so deep in the woods right now that medical experts are struggling to bring him out.

The last few months have been a series of setbacks and progressions.  Some days good, some days bad.  Right now, things are not looking great, and Amy is now having to endure conversations about “Do Not Resuscitate” orders.

Miracles can happen.  I am writing this in the belief that Capt. Snuggles is going to pull through this and go home to live with his family.

I thought it would be hard to raise a child with autism.  But what I have to go through is nothing compared to what some other parents have to endure.  At least my child is alive.  At least I can kiss him goodnight with the reasonable expectation that I will get to hug him when he wakes up the following morning.

When I think about Amy and her family, and what they’re currently living with, I find myself grateful – tearfully, overwhelmingly grateful – for every single second I have with my boys.

(Click here to read Amy’s story)

Photo credit: Amy (http://transplantedx3.wordpress.com)