De(com)pression [and Identity Crisis Addendum]

Finally made it home okay, no issues with flights or delays.  Armand spent roughly 1/3 of the trip napping (a major accomplishment considering that for some reason he slept from 4:30 pm Wednesday to 6:30 am Thursday).  I guess all the excitment made him crash a bit.  He spent another 1/3 of the trip being a wild and crazy guy, missing only Steve Martin to tag along.  The other 1/3 was spent charming stewardesses, guys coming back from bachelor parties, and grandmothers.  If he makes it through all this by some miracle, the kid’s gonna be a star somewhere with a million-dollar smile.

Looking at it, I feel only incrementally farther along than we were when we left.  We still may-or-may-not even do the bone marrow transplant, if the group in Minnesota decides that he’s not a good candidate due to the nature of his disorder.  The combination of BMT plus the AIM therapy seems promising, if only on paper.  I feel like we’re entering unexplored territory, like a black hole in space; but, like a black hole, we’ve been stuck since the diagnosis with no escape.

Both Lindy and my mom brought up the same question that we should have asked everyone involved: if it was your son, what would you do?  Would you sit back and do nothing, knowing the outcome but doing nothing to maaaaayyybe prevent it or postpone it?  Do you unndergo one or more risky, even fatal procedures on the off-chance that it might do something to stave off the inevitable, banking that things in the medical community may change down the line?  It takes some thought to ponder these things;  it takes time as well, but that is a luxery we can’t afford at the moment.  We have been mildly lucky considering: there are many parents that don’t even make it this far, kids who have the Type I of GM1 rarely even see their third birthday; other kids who are in similar situations or have other progressive disorders don’t get the support of amazing doctors, researchers, family, friends, and just randomly interested parties.

For those who are parents reading this, or hope to be parents reading this, I do ask that rhetorical question: if it was your son or daughter, what would you do?  Those who are parents, think about that tonight, then when you wake up, hug your kids with a renewed sense of appreciation.

When we first got this diagnosis, there was a measure of depression in me when looking around.  I used to even see customers at my work, older people, and my first thought was “my son will never live to be that old”.  I’d see small kids walking and running with no problem, and wonder if Armand would get strong enough to be that way before he regresses into a wheelchair.  I even have had moments when I wonder that if I could see the future and know then what I knew now, would I concur as easily with Lindy that we have Armand — knowing what it’s going to be like for him.  When people say they are praying for me I say focus your prayers on Armand, don’t worry about me — he has to live it, I just have to watch.

But I think about his smile, the way he has changed me, the warmth he as afforded me, his laugh, the fight in his heart, the brightness of his eyes, and his tiny little buns, and I wonder which is more selfish of me — to wonder if we should have had him, or feel right in our decision.  Either way, I wouldn’t trade the experience of the last two years and the next however many more we have left for any other experience — the path I’ve chosen so far has led me here and, with some exceptions, I feel it has been the right path.  So I’m taking a little strength and fight from him, just borrowing it for a little while, so I can stand strong beside him and beside Lindy, knowing the army of people that have shown up at our side to stand with us, and we will figure out how to continue on this path and keep that smile bright and warm for everyone to see.

A mild addendum to my earlier post, Identity Crisis, where I spoke of the various nicknames that I’ve abused my kid with.  I was also reminded during our trip that many times I refer to items of Armand’s by a completely different name.   For instance, his new hearing aids I call his “headphones”.  His coat I call his “armor”.  I began referring to his hood as his “cowl”, like it turns him into batman or something.  His diapers are his “shorts”.  His hats are his “helmets”.  I think I may start referring to his leg braces as his “Roman sandles“.

I also spend much of my time with him singing him asinine songs generally made up of his random nicknames.  For isntance, a ringtone I had for a while was a recording of myself singing this little lullaby:

Wee Little Fat Man, Fat Man, Fat Man
Wee Little Fat Man, Fat Man Pu
Wee Little Fat Man, Fat Man, Fat Man
I’m A Little Fat Man, How ‘Bout You?

Let’s face it, language-wise, the kid never stood a chance.

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2 Responses to De(com)pression [and Identity Crisis Addendum]

  1. Cari Schiml says:

    As a parent, I can’t say 100% what I would do, but the largest part of me would want to do whatever it took to help one of them live a longer life. The problem is, like you asked, would I be doing it out of selfishness for me, wanting to have them with me as long as possible, or would I truly be doing it for their benefit, even knowing they would be the ones going through the pain and suffering? I also have sat and thought about the advancements in technology. My question to you is could you live with yourself if you didn’t at least try, not knowing if it could have worked out for the greater good for Armand? My heart truly goes out to you. I hope to never be in a position like this. If you need anything – a shoulder to cry on or someone to scream, yell, and vent to, so as to be stronger for him, I’m only a phone call away.

  2. Pingback: Abraca-Da-Da | armandshope

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