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What Does It Feel Like?

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Or translated: How are you doing? How are you coping?

Of course, we must begin with the neurotic disclaimer – coming from the part of me that must fend off criticism or doubt before it surfaces – that Tom's story is not my first visit to hell. No exaggerations, but I've been in the shit before.

And so, what does it feel like? How do I manage this whole illness thing?

Mostly not very well, or so it seems.

I walk through the kitchen, fairly numb to the impossible-to-clean floor, which looks every bit as impossible, grit trapped in relentless pockmarks that make a once white surface a collection of dingy stains. But what really catches my attention is the sight of the full pill cup.

Not just full, but seemingly abandoned. This means meds not taken on schedule and this observation reaches up and smacks me across the head, hard, with the dire message that I'm perhaps not a very good mother. And inside I think, "see, you shouldn't have spent so much time with your email, or you would have been on top of this." Even if the previous 40 minute email session was a chance for me to vent, rant, cry, and even laugh with some good souls, the pure organic goodness of that unburdening is trampled on, muddied with my own constant guilt of not measuring up.

That's one thing.

Another thing is exhaustion. Physical, mental, emotional. Nothing that parents – OK, humans – don't typically deal with anyway, but this is still unexpected. Especially the end of the day collapse; I feel like I'm the mother of very little babies all over again. When the meal is done, the dishes are cleared, all I want to do is melt into the television or a good book – and then I remember: I have to get the night pills ready. Or I have to prepare the tube feed. And really, it's not all on me to do this. Dave is very capable and is usually ready to do what needs to be done on top of his own crazy exhaustion. But that's not the point.

The point is – those extra steps – they suck. We shouldn't have to deal with pills, weekly blood draws, infusion bags, tube flushes, stool checks. We shouldn't have to refinance the house because money suddenly got so tight, we shouldn't have to run around collecting signatures, and forms, forms, forms, forms to apply for additional insurance.

We shouldn't have weeks piled with clinic visits in Boston, nurse visits to the house, social worker visits, clergy visits, Make-A-Wish visits. Make-A-Wish? Isn't that for real sick kids? Kids who might die? Indeed, it is.

And the worst really is that whole "might die" scenario.

All parents go through this; from the time they tip-toed out of the nursery, to the time they tossed over the car keys, to the time that their very precious child said, "Mom? I've enlisted," parents hold collective breaths all over the world, willing that nothing wicked this way will come. Never, ever. They chant the universal pleaseDearGodkeepthemsafe prayer until their rosaries and prayer beads are worn smooth from anguish and hope.

Tom could have died last February when he had the esophageal bleed. He could have died this June when his kidneys failed. He could have died each time he had a simple endoscopy, in fact one simple procedure resulted in an unexpected overnight stay, because his lungs weren't responding well during recovery. And he could have died during the seven-hour surgery he had in 2007.

So, naturally, of course, this brings us up to the big T. The transplant. The waiting. The uncertainty. Tom does appreciate on the surface how significant his "listing" is. He knows in theory that the surgery will help his life dramatically. But he's remarked, "Everyone keeps congratulating me – but they don't have to go through it."

And so next week Tom starts his freshman year at Dracut High, he'll have to "go through" this new school year complete with ninth grade anxieties and an NG tube taped to his cheek.

And how am I doing? I'm a mess like any other parent, yet I'm damn proud of that kid.

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About MaryKay

  • Mat Brewster

    That was very moving, Mary. I’m so sorry such wonderful people have to go through such horrible things.

  • David Murgo

    Okay, I’ll admit it…you got me crying…God bless you and yours…You remain in my thoughts and prayers, as always. Thank you for the insights, the friendship, and the truths I’d be missing without your words, my dear friend…

  • “We shouldn’t have to refinance the house because money suddenly got so tight, we shouldn’t have to run around collecting signatures, and forms, forms, forms, forms to apply for additional insurance.”

    No, you shouldn’t and if America had socialised medicine like we do you wouldn’t have to worry about all of that nonsense *as well* as worrying about your kid. You deserve a bloody medal.

    Mary, the thoughts of all the Mondo clan are with you.

  • Thanks everyone. Originally I meant to say more, and say it better. I’ve been writing these thoughts in my head for a long time now, and occasionally some words made it to print in my own blog. But the thoughts all began the same way – variations of “I don’t recognize my life anymore”, “I didn’t sign up for this”, and even “OK, this isn’t fun any more”. *sigh* There are many moments of suck-i-tude. But we are still hopeful and grateful for many, many good things that we experience every day.

  • Linda Saleski

    “I’m damn proud of that kid.” Says it all, love, pride, breath, and joy… and all of the other things. What an amazing Mom!

  • aww Linda – thanks.

  • Josh Hathaway

    This is one of the toughest pieces I’ve ever had to edit, Sir Mary, but not for the usual reasons. I am blaming it totally on the crappy monitor, but for some reason the screen got blurry there. You’re all in our prayers.

  • Jordan Richardson

    A beautiful, incredibly moving piece of art. Thanks for sharing it with us, Mary.

  • Mary, this is indeed a moving piece that touches all readers, parents and non-parents. Josh says it was a tough piece to edit, but I’ll bet it was an even tougher piece to write.

  • jen

    We love all of you with a special shout out to Tom & his Mama…both of you are my heroes.

  • Mary, You don’t know me, and on the surface I may not know you. But I have dealt with some of the same emotions you have written here. My daughter was born a preemie. And has suffered some serious complications over the past 2 years since her birth. Thank you very much for this post. Because I understand quite well how it is to feel you are the only mother out there that has these emotions. Even when you know you are not, it always just seems to be frank ‘unfair’. And That it is. Your situation seems dissimilar to mine, but either way the emotions of going through seeing your child suffer bare the same weight from mother to mother. I appreciate your words, although you say you couldn’t quite write them the way you had wished to portray them. They are accurate, as accurate as your feelings can be portrayed when going through something such as you and your family are. It pours out when it has too, and its about the only thing that makes you feel a little more in control. I guess what I am trying to say, is thank you for rekindling feelings of understanding through these times. My prayers are with you and your family. Although sometimes you may feel alone, we never truly are…

  • Reading the comments, I see we are all moved by your honesty, Mary. Sending you emotional support, wishing you a good night’s rest, and a full recovery for Tom. Is there anything we can do to help from a distance?


  • Again, thanks to everyone for the comments and support. Cindal – thank you for your sharing. And Helen – mostly prayers are helpful – but I might as well take the opportunity to add a link here for the Liver Life Walk that we will participate in on Sept. 13. Our team is called Tom’s Team and we’re already raised over $3,000.00 for the American Liver Foundation.

  • Wow! I am not a mom. You are amazing. A hero. You and Tom are both lucky to have each other.

  • And I am damn proud of you for sharing. I am guessing many people in similar circumstances feel all alone, so this will know don’t help all who stumble across it.

  • Your sheer honesty and raw emotion are quite touching. You didn’t have to share this, yet you did. Thank you. You are helping so many, perhaps even more than you know. You are not alone. Be blessed. We are with you. This much, I know for sure.