Yesterday, I was golfing with a friend of mine and he asked me, “How are you doing Murph… Got any fun trips planned?”
In an instant I thought about this trip I have been begging my wife to go on with me as a celebration of my 40th birthday. Very rarely do we get time alone together. Now a day’s… The only time we see each other is just before our heads hit the pillow. I look at her — she looks at me — and we say, “I’ll see you tomorrow.” Like two ships passing in the night. You know the other is there but, you’re both so focused on navigating the dark and the fog that you pass without a sound.
I have been tracking flights to San Francisco. Man they are cheap. I saw one the other day for $250 per ticket round trip. I don’t fly a ton but, usually take 1–3 trips a year and I have never seen tickets this cheap. Man, I need to jump on these. So, I keep emailing her, let’s go, let’s make this happen, we deserve it, we need some alone time, etc….
Murph, I love you — you know that. I would love nothing more than to take this trip to San Francisco. I have always dreamed of being there with you, sipping wine, seeing the amazing sights and enjoying a romantic time with the guy I love more than anything.”
BUT!!!!
We don’t have anyone willing to take care of Shanley for more than 2 nights. Everyone is nervous about taking on the responsibility of changing her “Set”. What if I don’t get it right. What if the insulin isn’t getting in her body. What if the pump doesn’t work. What if Shanley gets scared to let me poke her with the needle. What if I don’t put enough insulin in the vile.
What if I am just scared shitless that I will do something wrong and Shay will end up back in the hospital. What if…
Frustration sets in. Not because others around us are not willing to take on this huge responsibility, not because I need to go to San Francisco and sure as hell not because I want to leave my little girl.
Frustration set in, my leg starts to bounce off the floor… I can’t sit still, my mind starts racing looking for solutions, the fighter in me comes out and says, “This disease isn’t going to get the best of us. We can’t let it tell us what to do!!”
All of these emotions are racing through me — because I feel like the disease is winning. It’s controlling our lives telling us what we can and cannot do. Holding us back from doing and making anything possible. My wife and I are being held hostage by it.
It’s at that very moment it dawns on me………… I say to myself, “Murph, you are not the one who has to live with this for the rest of your life. Shay, she will have this same conversation every single day of her life. You, one day will not have these restriction, these bars around you.”
I wish I could put into words what moments like this really feel like. The only picture I can paint is one of a car sitting in a junk yard. It’s just a little Volkswagen beetle, only a few years old. Maybe 5. It’s red and shinny and it almost looks like there is a smile on its front bumper. In an instant a HUGE 50,000 pound metal plate comes down from the sky like a rock and SMASHES!!! the little car.
After I told my buddy this story on the golf course he looked at me and said, “I don’t know what to say…” with a look on his face of helplessness. I could sense his genuine response. He didn’t want to say a word that would belittle the moment and what my family is going through. While at the same time he wanted to say something inspiring and uplifting. The question in his mind had to be, “What?”
As I walked in the house from an awesome day of golf; all my girls were chilling out on the couch. It was getting late and Shay needed to get a new “Set.” A “Set” is what we call the changing of her insulin tube which distributes insulin from her pump into her body. There is a very fine needle at the end of what looks like a circular band-aid. Every two days we need to change this “Set” and stick this needle into her butt. Changing locations from one cheek to the next. Every two days for the past 3 years and every 2 days for the rest of her life.
In this moment as my wife and I are kneeling at Shay’s side. Shay looks up into my eyes and says, “Dad, I don’t think I am ever going to have kids.” My heart sank, my eyes started to water, my body felt hot… “Why my love?” I asked. “Because I don’t want my baby to have Type 1 Diabetes like me. I don’t want her to get poked every night, have to change “Sets” and not be like all the other kids.”
It’s moments like this That Remind You…
This Disease Is A Bitch!
Yesterday, I was golfing with a friend of mine and he asked me, “How are you doing Murph… Got any fun trips planned?”
In an instant I thought about this trip I have been begging my wife to go on with me as a celebration of my 40th birthday. Very rarely do we get time alone together. Now a day’s… The only time we see each other is just before our heads hit the pillow. I look at her — she looks at me — and we say, “I’ll see you tomorrow.” Like two ships passing in the night. You know the other is there but, you’re both so focused on navigating the dark and the fog that you pass without a sound.
I have been tracking flights to San Francisco. Man they are cheap. I saw one the other day for $250 per ticket round trip. I don’t fly a ton but, usually take 1–3 trips a year and I have never seen tickets this cheap. Man, I need to jump on these. So, I keep emailing her, let’s go, let’s make this happen, we deserve it, we need some alone time, etc….
Murph, I love you — you know that. I would love nothing more than to take this trip to San Francisco. I have always dreamed of being there with you, sipping wine, seeing the amazing sights and enjoying a romantic time with the guy I love more than anything.”
BUT!!!!
We don’t have anyone willing to take care of Shanley for more than 2 nights. Everyone is nervous about taking on the responsibility of changing her “Set”. What if I don’t get it right. What if the insulin isn’t getting in her body. What if the pump doesn’t work. What if Shanley gets scared to let me poke her with the needle. What if I don’t put enough insulin in the vile.
What if I am just scared shitless that I will do something wrong and Shay will end up back in the hospital. What if…
Frustration sets in. Not because others around us are not willing to take on this huge responsibility, not because I need to go to San Francisco and sure as hell not because I want to leave my little girl.
Frustration set in, my leg starts to bounce off the floor… I can’t sit still, my mind starts racing looking for solutions, the fighter in me comes out and says, “This disease isn’t going to get the best of us. We can’t let it tell us what to do!!”
All of these emotions are racing through me — because I feel like the disease is winning. It’s controlling our lives telling us what we can and cannot do. Holding us back from doing and making anything possible. My wife and I are being held hostage by it.
It’s at that very moment it dawns on me………… I say to myself, “Murph, you are not the one who has to live with this for the rest of your life. Shay, she will have this same conversation every single day of her life. You, one day will not have these restriction, these bars around you.”
I wish I could put into words what moments like this really feel like. The only picture I can paint is one of a car sitting in a junk yard. It’s just a little Volkswagen beetle, only a few years old. Maybe 5. It’s red and shinny and it almost looks like there is a smile on its front bumper. In an instant a HUGE 50,000 pound metal plate comes down from the sky like a rock and SMASHES!!! the little car.
After I told my buddy this story on the golf course he looked at me and said, “I don’t know what to say…” with a look on his face of helplessness. I could sense his genuine response. He didn’t want to say a word that would belittle the moment and what my family is going through. While at the same time he wanted to say something inspiring and uplifting. The question in his mind had to be, “What?”
As I walked in the house from an awesome day of golf; all my girls were chilling out on the couch. It was getting late and Shay needed to get a new “Set.” A “Set” is what we call the changing of her insulin tube which distributes insulin from her pump into her body. There is a very fine needle at the end of what looks like a circular band-aid. Every two days we need to change this “Set” and stick this needle into her butt. Changing locations from one cheek to the next. Every two days for the past 3 years and every 2 days for the rest of her life.
In this moment as my wife and I are kneeling at Shay’s side. Shay looks up into my eyes and says, “Dad, I don’t think I am ever going to have kids.” My heart sank, my eyes started to water, my body felt hot… “Why my love?” I asked. “Because I don’t want my baby to have Type 1 Diabetes like me. I don’t want her to get poked every night, have to change “Sets” and not be like all the other kids.”
Join Us In The Fight @ TeamSugarShay.com
Tim Murphy
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