The fact of the matter is, I’m a 37 year old widower. By most standards, it’s quite unique. I wasn’t married to someone in a high-risk career. Megan wasn’t in her seventies, hell, she barely made it into her thirties. Statistically, I’m much more likely to be divorced than widowed at my age.
The fact of the matter is, Cystic Fibrosis is a brutal disease. It’s filled with ups and downs that last a lifetime. Emergency room trips and months-long inpatient stays, immediately followed by “feeling good” and leading a normal life for awhile. One can never plan their lives out more than a few months in advance. You just don’t know what’s around the corner.
The fact of the matter is, I understood all of this very early on in Megan and I’s relationship. I knew she would have to be admitted to the hospital for, at a minimum, two weeks at a time, multiple times per year. I was completely aware that birthdays, holidays, vacations and other events would be a crap shoot from time to time, not knowing if she would be blowing out candles or coughing up blood.
`Yesterday, the 26th, was Sarah’s mother’s birthday. Part of a tradition that she has done over the years is to have a small cake, and a bouquet of flowers, as a way of celebrating her, though she’s no longer here. It’s a simple gesture that means so much. She lost her mother when she was only nine years old. While her siblings were much older, and had much more time with her, Sarah had to “make do” with memories she only had as a little girl, and recollections of her older siblings.
Shelby, too, lost her mother at a young age. She was only seven when Megan died. She remembers quite a bit, but again, she was nowhere near adulthood when any memories she could form ceased. She relies heavily on myself, grandparents, and her uncle for the stories that she may have been a part of, but still too young to realize they were something to remember.
As we sat down to partake in the yearly birthday cake, I (somewhat in jest) asked Shelby if she remembered Megan’s birthday. She did not, other than she knew it was in summer (her guess was a month off). I wasn’t disappointed, for she’s still just a little girl. It is not like she has a date planner or had any part in actually NEEDING to remember the exact date of her mother’s birth.
After some good natured ribbing, and finishing our cake, Shelby asked a question to Sarah.
“Did you ever forget your mom’s birthday?”Read more
Just two weeks ago, I wrote of a friend that was, at the time, fighting for her life in the ICU, hoping for a lung transplant. She was on death’s door, and no one could guess if she would make it another week, waiting for a donor.
I am happy to say, that, as of yesterday, she received her transplant. A call came in late in the night on Sunday, and by 8:00 AM, she was being wheeled into surgery. That’s all well and good. It’s great news, in fact. It’s one less person that is going to die from Cystic Fibrosis this week. I witnessed Megan’s brother Jason in almost the exact same state, back in 2005. He didn’t make it. I witnessed Megan in almost the exact same state in 2011. She DID make it. It’s always hit or miss, but in this particular case, it was a “hit”.
But. There’s always a “but”.Read more
The other day I received a text message from a friend of mine, who happens to have Cystic Fibrosis herself. This friend was there for Megan and I when Megan was going through her 6 month decline, and I can’t describe enough how she (and her husband) went above and beyond for us.
They would visit at the drop of a hat, when I just needed an hour away from the ICU, and Megan needed an hour away from my ugly mug. They would bring clandestine snacks for Megan when she had cravings, as she almost never had an appetite, but when she did, she needed broccoli and cheese soup (I can no longer stand the smell) or M&Ms RIGHT NOW.
I spoke with her every day during Megan’s hospitalization, giving her status updates, vital statistics, and news. She would get all the gory details, and, if I happened to be running late with the call, I would get a text not long after, asking how Megan was doing. She really did care whole-heartedly.Read more
The American Chestnut is a large, stately, useful tree. At one time, over a quarter of the eastern American woods were populated by this tree. The wood is rot resistant, the nuts are delicious, and even the oils in its bark has medicinal properties.
Nobody wanted to see the Chestnut go away, and it didn’t want to die off. Over eons it evolved into the strong, prolific queen of the forest. It provided shade, shelter, and nourishment for the rest of the woods, and it provided it’s resources for the native Americans and settlers in the areas in which it grew.
But it got a raw deal.Read more
Two years ago today, Megan was admitted to the hospital for the final time. Her rejection had already been diagnosed months before, and she was heading in for a yet another check-up and round of tests. Her dad was going to take her to the appointment, I was going to head to work, and she would be back in the evening.
I carried her to the car that morning. She was too weak to even walk the 20 or so steps from our living room to his vehicle. I loaded up her portable oxygen tanks, made sure she had extra tubing for them, a blanket on her lap, and kissed her goodbye.
That was the last time I would see her leave the house without me.
“I would rather be ashes than dust!
I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot.
I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet.
The function of man is to live, not to exist.
I shall not waste my days trying to prolong them.
I shall use my time.” - Jack London
I often find myself in the shadow of my past, looming over me like a great monolith, telling me not to change. As if it is saying “this is your comfortable, shady spot, protected from the winds and scorching sun. Don’t move from this, lest you find yourself exposed”
The time has finally come to clean up the basement of my house. When I say that, I don’t mean that I need to go through and organize some of Megan’s things. I mean that the entire basement, full of god-knows-what from Megan, myself, and Shelby needs to be perused, bit by bit.
When we moved to this house (for the second time, long story) 4 years ago, we had already accumulated the detritus of 10 years of living together. Boxes upon boxes of paperwork, medical records, cables, doohickeys, whatzits, and general “stuff” tend to pile up and get shoved into a dark corner of a house to be dealt with another day.
Today (the past month or so, actually) is another day.Read more
For the past week, maybe two, I have been in a complete and total funk. There hasn’t been any specific trigger. No anniversaries, birthdays, significant dates to remember, or big “firsts without Megan” that have occurred. It is the same as always...I wish she were here and I miss her, but the grief of losing her is not overpowering. I can still accomplish day to day functions.
Shelby gets to school, I get to work on time, homework is done, dishes are washed, and dinner is eaten nightly. The cars aren’t falling apart and the lawn is mowed. I even put in an entire flower/ vegetable garden this past weekend. Looking in from the outside, you would never know that I was a widower. Everything is in order, and I present a neat and happy appearance.
But internally, something is up.Read more
In the spring, before Megan died, she and I decided to have a deck built on the back of our home. Nothing too fancy. It was to be a 12 foot by 12 foot square, with a new sliding glass door leading to it. We had wanted to have one on our house for years, and we were finally going to get it done.
We shopped out for a few different construction companies to give us a quote, and by about this time in 2014, we have chosen one and signed a contract.
Megan would decline in health and be admitted to the hospital a few weeks later. She came home one time that summer, after the deck was started, and sat on a half-completed platform, with no railings. She was bundled in a blanket in the 85 degree heat, being so emaciated that she could barely generate body heat.
That was the first, last, and only time she ever sat on that deck.