“My husband and I have only been married 5 years, I need more time to show him how much I truly
love him. I want my lifetime with him. I want the fighting, and loving. He has stayed by me though
everything, even when it gets so frustrating I could give up. Though we both are frustrated by my
disease, he has never let that break us. He won't give up on me. He has given up so much to make me
happy and to do what is right for me, never thinking how it's going to affect him first. He would do
anything for me, and this I know because he has done everything for me. I have never been so in love
with anyone else in my life. He is the only one that makes me whole. He is always loving me, and for that
I love him.”
Those words were written by Megan, in October of 2010. At the time, she was incredibly sick. An oxygen machine had sat in our living room, loudly buzzing away 24/7 for about a year so far. More often than not, she wasn’t home, she was in the hospital. I would mix and prepare her aerosol treatments for her, bring her her pills, wash her clothes, cook dinner, and go to work. I’d lift her into and out of the tub, and wash her hair for her. If we did leave the house, I would ensure she had everything she needed, including a wheelchair.
It took a village, make no mistake. Her parents were there for her, for us, whenever she needed. I couldn’t be there at all hours. I had to stay in a dead-end job, with a 2 hour commute each way, just so we could keep our insurance. Even when I would receive offers from nearby and more desirable employers, I couldn’t entertain them, because the 90 day wait for healthcare would have bankrupted us in medical bills. Her parents certainly were focused on her well-being, and Shelby’s, and more than made up for the times that I couldn’t be there.
It was a thankless job...or so I thought.
This past week, in between various errands and chores and work tasks, I took an hour or so to go for a walk at one of my favorite hiking trails nearby. It’s been on my mind ever since, for a few reasons. I don’t really take time to myself out in nature anymore like I used to. Life is so much busier now and there just never seems to be time. More like I always seem to find 50 other things I “should” be doing. So it was a real treat to spend a few hours just going for a walk.
I walked a short way down the trail before returning to my car, which happened to be parked at a little pullover on the side of the road, just in front of a creek. There’s a bench I know of, just past my car, that sits overlooking the creek. I went to sit for a while, and discovered a little painted stone someone had left on the bench. It was gold, with a smiley face painted on it, and the word “Happy” written clearly by a child. It brightened me even further, feeling like a sign or confirmation that I need to do this more for myself… get out in nature on my own so that I can truly connect with it. Little did I know there was an even bigger sign in front of me, with a beautiful lesson...
Hi readers! Mike had some things come up and wasn't able to post today, so I'm dropping in to take his place! He will be back with a new post next Tuesday!
It isn’t so often that I meet people who have been through as much darkness as I have. Although I know there are plenty of people who have, it’s not exactly like there are clubs for us. So yesterday was a bit of a beautiful reprieve, when I spent the afternoon with a new friend here in Ohio.
On our first time meeting each other for coffee last year, we spouted off one thing after another that we had in common. Like me, she is an artist. She also happens to be a transplant from Texas, like me. We have both lost our parents at young ages. We both lost someone else significant in a traumatic way… for me, it was Drew. For her, it was her brother. We both came from families of dysfunction and substance abuse. It was unreal… and I can still remember our eyes widening in surprise as we looked at each other feeling like twins. As we shared our horrible facts nonchalantly, knowing we didn’t have to worry about what the other person thought. It was the biggest “me too” I think I’ve ever had with another person.
Sadly, it’s probably been a year now since that initial coffee date, and we have failed to hang out all that time. Because for people like us - it’s easy to isolate from the world. When you have already had so much loss and trauma, it becomes easier to just not get attached to very many people. You become extra guarded. You have such an acute awareness of people’s mortality and you know, that they are all going to leave you. It makes you a lot choosier about who you let in… sometimes, that’s a good thing. But sometimes it prevents you from letting in the right people too. I have fought with this my whole life. It seems, my friend has too.Read more
There are days that make you look at the places you are arriving more than the ones you are leaving behind. Mike and I spent most of the afternoon yesterday out hiking. It was the first warm, sunny day we’ve had in ages in Ohio… and it put me in an especially grateful mood just to be existing and feeling the sunshine. We went to a big overlook high up on a ridge, one we hadn’t been to in over a year. It looked out on the river, which snaked and curled down through the valley below.
Afterwards we drove down into the valley to hike around by the river that we had just stood above. It was an area neither Mike nor I had ever hiked before… and it led us to a beautiful cascading waterfall that came out to meet the river from a side creek. It nearly took my breath away. We remembered seeing this very ravine a year ago, from far across the river, not knowing how to reach it. There was a deep feeling of accomplishment about finally discovering the way to get to this spot - particularly as it was quite on accident. I mentioned to Mike, I could sit here all day and watch the water tumbling softly down the thin plates of shale on its journey to the river.Read more
Last week I shared about feeling like some new layers of my grief are beginning to thaw as we shifted the calendar into what is my 5th year on this journey. I was pretty teary the week before, but it wasn’t until this past week that the breakdown came. Quite honestly, I’m glad for it. It was such a release.
I don’t even know why it came when it did. Nothing particular triggered it. I think I was just exhausted. A combination of underlying emotions and residual holiday stress and unexpected school cancellations for Mike’s daughter… somewhere halfway through the week, as I was driving home from dropping her off to school, I just broke. I think it was a song that started things off… “The Sound of Silence” it was called. Suddenly, I am screaming and crying with all of my might with the music cranked as loud as it can go.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
Ever since that horrible day 4 years ago, I have been shoved into every imaginable situation of discomfort. Just like all of you. I’ve been thrust into an oblivion… a war zone of emotions… trying to fight my way through without even knowing which direction I am fighting towards. Fighting in the dark. Wandering. Scared. Trying to survive. Trying to figure out just what it is that I am actually fighting for. Trying to understand what is even worth it in this life, so that I can want to still be here.
The thing about all this, is that it changed me. All this struggle, all this fight to find reasons to be here, to still find the beauty in life, has changed me.
I’ve said it before, but his death taught me that fear is not a good enough reason anymore. He died in order to live his dreams as a helicopter pilot. He knew the risks, we both did… and he chose it anyway. You would think I would be mad about that (and I certainly went through a period of being really pissed that he didn’t have a more boring “safe” job). Instead, it is like his forever reminder to me to not let my fear get in the way.
If he could be willing to risk his life for what he loved doing, than I choose to honor him by trying to always do the same. So while my fears may still be there, I keep choosing to step outside my comfort zones and walk through the uncomfortable spaces. I’ve started to see that beauty and wonder are always just on the other side of fear. A recent experience has reminded me of that...
Dear Younger Self,
Today is the four year anniversary of that horrible day… and you are just beginning on this ride of horrors. I wish I could have been there at the beginning. From here, there is so much I can tell you about what you’ll be facing in the years ahead, and about what wondrous things will unfold, too. I wanted to take a moment to write to you about all that is to come...
I can still remember getting the phone call, and Drew’s dad’s voice on the other end of the line that revealed to me he didn’t survive the crash. I can remember how the room spun around me… how it is spinning around you right now. I remember the primal, animal sounds coming out of my insides as I screamed in denial at his dad across the line. I can still remember the very worst parts of those first weeks… the shock. And the word that I began to hate for it’s overuse… “disbelief”.
I remember my emotions cycling at lightning speed, going from complete disbelief and a total inability to grasp reality one minute, to slamming against me with the full force of understanding in the next. I know, you are crying for hours at a time. And I know that you can barely sleep past 5am, and that the mornings are a special kind of nightmare for you, as you wake up and realize that, no, it wasn’t all a dream. Trust me, you will never forget how horrible those mornings felt, but, in 6 months or so, you’ll start to sleep longer, and eventually you will begin to have peaceful, okay mornings mixed between the bad ones. The nightmarish mornings will not last forever, but it is going to take a long time. Be patient with yourself.
The face of grief is always changing. Grief never ends - it just shifts and changes, over and over and over again. The past few months, my grief tsunami has turned into something very different than ever before. I almost want to call it "profound", but that sounds too pompous. I do feel as if this past year or so, I have been able to dig deeper into the abyss than ever before. I have reached inside, pulled out pain, and then started to make some sense of it, like solving a puzzle. Piece by piece, the joy inside the life that I have now, today, is starting to emerge.
It is my belief that in order to get here, I had to feel and analyze and break down and sit with every single fragment of my grief. It was probably the hardest thing I ever did. I am not finished. I might not ever be. There is no finish line - only sharp turns of major growth and awakening. But every single day, I wake up in a new way, all over again. I wake up with the knowledge that I am still and always learning.Read more