Heads or Tails

It is easy enough for most of us to identify with our own, “widowed” side of the story.  We’re the ones left behind when our partner dies. We are all suddenly single parents, sole breadwinners, alone, scared, and confused.  It doesn’t matter if we’ve had years to accept the impending death, or minutes.

But, what if we were on the other side of that coin?  What if we knew we were the ones leaving others behind?  If we knew that our children, partner, friends and family were going to have to be without us?  What if we had to trust...REALLY trust that when we were gone, it would be horrible for our loved ones, but everything would be alright?  

Even more risky, what if the riskiest thing we had to do was the one thing that kept us around longer?

This is what I’m thinking about this morning, after talking with an old friend yesterday.

She has Cystic Fibrosis, and was good friends with Megan before we ever met.  She was there for both Megan and I through thick and thin, especially those last months before her death, and the months thereafter.  I confess that we haven’t kept in touch as much as we should have, but such is life. She and her partner BOTH have CF, although he received a double lung and liver transplant years ago, and is in relative good health.

She is in the worst stage of the process...leading up to transplant.  You have to be “sick enough” to be listed, but not “too sick” to risk a very traumatic surgery.  Life becomes a cycle of a few weeks in the hospital, a few weeks at home, with the hospital time demanding more and more until that “Goldilocks” donor is found.  

Most CF patients that are over 21 are familiar with this.  They’ve seen friends die, and they’ve seen friends receive transplants and a new life.  They’ve felt like they are breathing through a straw that is continually, slowly restricting, and they’re taking a cocktail of drugs, antibiotics, steroids, and pancreatic enzymes.  Sometimes they feel fine, and sometimes they feel like they are being strangled. It’s a pretty miserable existence, but I’ve yet to meet a CF patient that hasn’t had a “so what?” attitude about it all...I mean, one experiences all of this beginning at birth.  It isn’t something you “get”.

In my friends’ cases, they had to watch his brother die, waiting for transplant.  They were around when Megan’s brother died, waiting for transplant. Her sister received a transplant a few years ago, and he, as stated, received a lung AND liver transplant quite some time ago.  They were there for Shelby’s birth, Megan’s first transplant, and all through her long, slow death a few years later.

And they have a two-year-old.  

As we were chatting last night, that was the primary subject.  Their son is reaching the age where he doesn’t really understand what is happening, just that something IS happening.  He notices that “mommy isn’t here”, but doesn’t understand why. His dad is with him most of the time, but I can tell you from experience, it’s not easy being a temporary single dad every other full moon, especially when your child is more attached to his mother.  In their case, it’s compounded by the fact that he has CF and is post-transplant himself. At the very least, I didn’t have that worry.

Their son is having some separation anxiety recently, when she is admitted.  It’s to be expected at his age, but still, as a parent, it’s hard to see. It’s difficult to think that because you are sick, through no fault of your own, your child is suffering.  Megan felt that way a decade ago, and now, our friend is experiencing it.

But she has to go through this.  There isn’t any magic pill she can take or miracle procedure she can undergo that allows her to be at home more often than not.  She has to wait it out, and risk it all, just to have that chance of being home full time. She also has to trust in the fact that, should the worst occur, that her son, and partner, will cope.  

She made a statement last night, that I heard from Megan so many times...she’s afraid to die now.  Prior to her pregnancy with Shelby, Megan didn’t even want a transplant. Hell, she didn’t even want to be ventilated or sedated in her final hours.  She had contented herself with the fact that she was going to die, and just figured on using the time she had to experience life, and to stare death head-on when the time came.

All that changed when Shelby arrived.  Suddenly, just as our friend is now saying, she was AFRAID to die.  Everything in her power would be done in order to stay around as long as possible.  She would suffer through being poked, prodded, drugged, sedated, ventilated, cut open and having recycled parts placed in her.  She would work her ASS off to get better and be stronger, just to be there for her child.

But still, she had to accept that it may be all-for-naught.  She had to expect the worst, but hope for the best. Shelby, to her credit, dealt with all of this about as good as a three-year-old could, and just wanted Megan home and healthy.  It’s not that she didn’t care that mommy was sick, it’s just that she vaguely understood that she “had” to be.

Ultimately, during our chat last night, I had to try to put myself in Megan’s mindset, because the person I was talking to was in Megan’s situation.  She was the one that was sick and admitted to the hospital, with a young child at home. It was far easier to put myself into her partner’s place, because I was the single dad trying to figure out how to raise our child for a few weeks, only for the dynamic to shift for a few weeks, then roller-coaster back again.  

I can’t imagine the thoughts that Megan was having through all of this.  She talked about them with me, but never to the extent that I knew every little detail about her fears.  I wish I could have, if only to be of more help to our friend now. Megan was on the flip side of the coin, having to be away from her child, wanting her to have fun and be raised well by her dad, but also missing out on so much and wanting nothing more than to be there.

But that’s the problem with coin tosses, you never know which side of the coin you’re going to land on.  


Showing 2 reactions

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  • Linda Keeling
    commented 2019-04-09 19:58:35 -0700
    Very thought provoking…. did great explaining this flip coin thing… never thought of this in the way you shared.. thank you!
  • Marty Tousley, RN, MS, FT
    commented 2019-04-09 12:15:26 -0700
    I once heard someone say that when someone we love dies, we must say goodbye to that person ~ but when it’s the person who is dying, he or she must say goodbye to everyone and everything he or she has ever loved. I simply cannot imagine how difficult, how painful, how impossible that must be. Thank you, Mike, for sharing this touching piece with all of us . . . ♥