D Day.
It reminds me of those video clips I like to watch, the one where something unexpected happens, and changes your life forever- not always for the good. A jumpsuited mechanic standing in the "pits" of the race track, a car skids across the curve, flipping end over end to smash into the unassuming man, who is just checking his watch, not even paying attention.
One second, the man is fine, checking his watch. The next- he is being slammed,crushed, dragged by the crashing car, then airlifted to a hospital, to lose limbs, to endure rehab, to try and reclaim the life and body he had before. I watch these videos, and am always fascinated by “the moment” of change. They can rewind it over and over, and there it is: before, and AFTER.
I never knew what it would be like to be someone who marks time that way, the way that I do now, in that everything is AFTER we found out our four year old son has Type 1 (insulin dependant) diabetes.
It was a regular Thursday, with the exception of the fact I’d scheduled an appointment for Logan with the Pediatrician, because he had peed in his bed three nights in a row. Considering he had just lost his dog and Grandpa in the same week previous, it was understandable that he might be showing signs of stress- but something nagged at me, and I just wanted to be sure. Better safe than sorry, because we were planning on going to Canada for a big family vacation on Sunday.
I will never forget the feeling I had when the doctor came in and asked me what Logan had eaten just before his visit. "Did he have a lot of sugar?" He asked me, his brow furrowed.
I knew.
Hospital time (Or, how we are introduced to the nightmare/blessing of Children's Hospital.)
Besides the swirling feeling I had, the exhaustion, the panic, the sorrow, the biggest feeling I had was utter rejection of the scenario. We were admitted and told we would be there for three days. WTF?? Yes, Jer and I had classes, Logan had treatments, and it was all a machine that started without our consent and would not stop.
Every book they handed me, I had to resist the urge to shove it back on their side of the table. Keep that shit away from me. Oh, cool syringe/pen/pokey/medicine thing! No thanks, how bout you shove it in your ear? These are the things running through my head, and I swear the nurse can hear them based on the "she's gonna be a tough one" look on her face when she glances at Jer. Fine. I'm tired of being nice anyway. I come up with a brilliant idea of cataloguing things I hate, while I ignore the smiling nurse who is trying to teach me to poke my kid with needles. My first list is of words.
Words I hate:
Diabetes
Blood
sugar
Blood Sugar
Bolus
insulin
poke
check
low/high
clinic
hospital
Also, as a footnote, I hate people who smile when they talk about diabetes. I want to smack every one of them. Plus I won't say Diabetes. I say Di-a bleet-eez. Sue me.
Day two in the hospital. I hate it, shocker.
Luckily I had an old quilt of ours in the car, and I covered Logan's bed with it, so he didn't feel so out of place. Three days of this nightmare of classes, injection classes, nutrition classes, social worker visits... I don't think we ate or slept the whole time. We had to start taking Logan to the
"treatment room" to have his blood tests and shots, because he kept waking up the very sick baby on the other side of the thin curtain that separated their beds.
The treatments are the "pinch and the poke" as we call them.. the poke is the check- blood draw. The pinch is the insulin shot..Logan sometimes calls it the HSP for “Horrible Stupid Pinch”.
It reminds me of those video clips I like to watch, the one where something unexpected happens, and changes your life forever- not always for the good. A jumpsuited mechanic standing in the "pits" of the race track, a car skids across the curve, flipping end over end to smash into the unassuming man, who is just checking his watch, not even paying attention.
One second, the man is fine, checking his watch. The next- he is being slammed,crushed, dragged by the crashing car, then airlifted to a hospital, to lose limbs, to endure rehab, to try and reclaim the life and body he had before. I watch these videos, and am always fascinated by “the moment” of change. They can rewind it over and over, and there it is: before, and AFTER.
I never knew what it would be like to be someone who marks time that way, the way that I do now, in that everything is AFTER we found out our four year old son has Type 1 (insulin dependant) diabetes.
It was a regular Thursday, with the exception of the fact I’d scheduled an appointment for Logan with the Pediatrician, because he had peed in his bed three nights in a row. Considering he had just lost his dog and Grandpa in the same week previous, it was understandable that he might be showing signs of stress- but something nagged at me, and I just wanted to be sure. Better safe than sorry, because we were planning on going to Canada for a big family vacation on Sunday.
I will never forget the feeling I had when the doctor came in and asked me what Logan had eaten just before his visit. "Did he have a lot of sugar?" He asked me, his brow furrowed.
I knew.
Hospital time (Or, how we are introduced to the nightmare/blessing of Children's Hospital.)
Besides the swirling feeling I had, the exhaustion, the panic, the sorrow, the biggest feeling I had was utter rejection of the scenario. We were admitted and told we would be there for three days. WTF?? Yes, Jer and I had classes, Logan had treatments, and it was all a machine that started without our consent and would not stop.
Every book they handed me, I had to resist the urge to shove it back on their side of the table. Keep that shit away from me. Oh, cool syringe/pen/pokey/medicine thing! No thanks, how bout you shove it in your ear? These are the things running through my head, and I swear the nurse can hear them based on the "she's gonna be a tough one" look on her face when she glances at Jer. Fine. I'm tired of being nice anyway. I come up with a brilliant idea of cataloguing things I hate, while I ignore the smiling nurse who is trying to teach me to poke my kid with needles. My first list is of words.
Words I hate:
Diabetes
Blood
sugar
Blood Sugar
Bolus
insulin
poke
check
low/high
clinic
hospital
Also, as a footnote, I hate people who smile when they talk about diabetes. I want to smack every one of them. Plus I won't say Diabetes. I say Di-a bleet-eez. Sue me.
Day two in the hospital. I hate it, shocker.
Luckily I had an old quilt of ours in the car, and I covered Logan's bed with it, so he didn't feel so out of place. Three days of this nightmare of classes, injection classes, nutrition classes, social worker visits... I don't think we ate or slept the whole time. We had to start taking Logan to the
"treatment room" to have his blood tests and shots, because he kept waking up the very sick baby on the other side of the thin curtain that separated their beds.
The treatments are the "pinch and the poke" as we call them.. the poke is the check- blood draw. The pinch is the insulin shot..Logan sometimes calls it the HSP for “Horrible Stupid Pinch”.
There was a lot of screaming, fear, terror, and begging. The mother on the other side of the curtain would break down and cry every time Logan begged us "not to hurt him any more", so we had to leave each time.
I also hated being alone. Each time I took a shower (in the well appointed family lounge on the fifth floor, taking the "train" elevators) or went pee, I’d just sob. I was trying so hard to stay strong for Logan, whenever he was not around, I’d fall apart. I would eat my lunch, then if I was alone, and I'd sob till my lunch came right back up. Sometimes the timing sucked and I had to cry through an entire “class” on either nutrition, how to do injections, or Diabetes 101. I had so many panic attacks and queasy times because of my unreasonable fear of needles and blood, I ended up having to pull my hair, pinch my thigh, or bite my fingers just to stay with it and not pass out.
I was (and am) so angry and ashamed of my fear, because I could see that it was the least productive fear to have in the moment. I am going to look up hypnotherapists and/or anxiety counseling when we get back home.
Finally the day arrives when we can leave, and rush home and pack up for our week long family trip into the Sunshine Coast of Canada. Jer and I decided on Day one, we ARE GOING ON THIS TRIP BECAUSE THE DIBALEETEEZ WILL NOT STOP US. (pant, pant) We don't want Logan to believe or even think that he is 'sick'. He is not sick. He has parts that no longer work.
Dieballleeeteez for newbies:
Your small, seemingly insignificant pancreas does an amazing thing. After your stomach breaks down your food into sugars (your fuel) your pancreas unleashes the perfect amount of insulin to allow the sugars to pass into your cells. We call insulin the "key master". (think Ghostbusters, you'll get there). The insulin unlocks the cell door, allowing sugars out of your bloodstream, and into your cells, and voila! You have energy! Life! Liberty! Pursuit of Happiness!
So all the poor fuckers with Type 1 Diabetes... their immune systems rises up (just like it does to fight a cold or virus) but it gets confused (all the very important doctors don't have a clue why) and instead of attacking something BAD.. it attacks something GOOD. Like certain cells in your pancreas. The cells that produce insulin. So their immune system happily goes to work, destroying the pancreas, until your body doesn't make insulin any more.
The lucky winner of this disease gets to kind of create an artificial pancreas outside their body int he form of a glucometer (blood sugar test kit) and insulin in syringes. Not to mention the Pythagorean theorems, cosign dependant, sickle cell bad ass calculations we have to figure out at each meal and snack to exactly compensate for his every bite of food.
There you have it. That is Type1 Diabetes. Fine. I guess I can say Diabetes without barfing sometimes.
Vacation Notes:
Loaded up with insulin, 4 jillion syringes, etc. We begin our journey into the most beautiful place I've ever seen, the Sunshine Coast of Canada, Powell River and Desolation Sound area.
Jer's parents have rented a fabulous large home for us to call home base while we explore. The first day there, we were still in shock, but the kids came up with a new game that spoke to their acceptance of the situation.
I also hated being alone. Each time I took a shower (in the well appointed family lounge on the fifth floor, taking the "train" elevators) or went pee, I’d just sob. I was trying so hard to stay strong for Logan, whenever he was not around, I’d fall apart. I would eat my lunch, then if I was alone, and I'd sob till my lunch came right back up. Sometimes the timing sucked and I had to cry through an entire “class” on either nutrition, how to do injections, or Diabetes 101. I had so many panic attacks and queasy times because of my unreasonable fear of needles and blood, I ended up having to pull my hair, pinch my thigh, or bite my fingers just to stay with it and not pass out.
I was (and am) so angry and ashamed of my fear, because I could see that it was the least productive fear to have in the moment. I am going to look up hypnotherapists and/or anxiety counseling when we get back home.
Finally the day arrives when we can leave, and rush home and pack up for our week long family trip into the Sunshine Coast of Canada. Jer and I decided on Day one, we ARE GOING ON THIS TRIP BECAUSE THE DIBALEETEEZ WILL NOT STOP US. (pant, pant) We don't want Logan to believe or even think that he is 'sick'. He is not sick. He has parts that no longer work.
Dieballleeeteez for newbies:
Your small, seemingly insignificant pancreas does an amazing thing. After your stomach breaks down your food into sugars (your fuel) your pancreas unleashes the perfect amount of insulin to allow the sugars to pass into your cells. We call insulin the "key master". (think Ghostbusters, you'll get there). The insulin unlocks the cell door, allowing sugars out of your bloodstream, and into your cells, and voila! You have energy! Life! Liberty! Pursuit of Happiness!
So all the poor fuckers with Type 1 Diabetes... their immune systems rises up (just like it does to fight a cold or virus) but it gets confused (all the very important doctors don't have a clue why) and instead of attacking something BAD.. it attacks something GOOD. Like certain cells in your pancreas. The cells that produce insulin. So their immune system happily goes to work, destroying the pancreas, until your body doesn't make insulin any more.
The lucky winner of this disease gets to kind of create an artificial pancreas outside their body int he form of a glucometer (blood sugar test kit) and insulin in syringes. Not to mention the Pythagorean theorems, cosign dependant, sickle cell bad ass calculations we have to figure out at each meal and snack to exactly compensate for his every bite of food.
There you have it. That is Type1 Diabetes. Fine. I guess I can say Diabetes without barfing sometimes.
Vacation Notes:
Loaded up with insulin, 4 jillion syringes, etc. We begin our journey into the most beautiful place I've ever seen, the Sunshine Coast of Canada, Powell River and Desolation Sound area.
Jer's parents have rented a fabulous large home for us to call home base while we explore. The first day there, we were still in shock, but the kids came up with a new game that spoke to their acceptance of the situation.
We had packed in utter time crunch, so we had minimal toys, but one thing I brought were the two main characters of "Toy Story" Woody and Jesse, 15 inch stuffed toys with pull strings that say obnoxious things like "Hey howdy HI!"
The kids soon came up with the game of "Throwing Jesse and Woody Off the Deck". After they found some bungee cords, it evolved into "catapult Jesse as far as you can" (Woody was spared this for some reason..)
Watching them crack up, I finally start to realize they may play normally again,and be happy little dudes.. then my favorite thing of the whole trip happens: Gray pulls Jesse waaaaaaay back, gets ready to launch, and as she flies out over the deck, he shouts out “Watch out for your Pamcreas!!” (he also calls pancakes, "pam"cakes so it's cute, see?!)
I feel hope for the first time, and tears stream down my face as I see my kids accepting this even before I can.
One day we went to Powell Lake , at a public park- it was seriously the most pristine, mountainous, gorgeous beach I have been to in a long while. Max cajoled me into the water, even though I had to swim in a sarong and tank top (no suit) but once I was in the water, it felt so amazing. The cool, clean water felt soft and silky on my skin.. I wanted to swim forever. I didn't feel like the mom of a kid with Diabetes, I didn't feel afraid. I didn't feel like my life, or Logan's, Gray's or Max's was ruined.
The kids soon came up with the game of "Throwing Jesse and Woody Off the Deck". After they found some bungee cords, it evolved into "catapult Jesse as far as you can" (Woody was spared this for some reason..)
Watching them crack up, I finally start to realize they may play normally again,and be happy little dudes.. then my favorite thing of the whole trip happens: Gray pulls Jesse waaaaaaay back, gets ready to launch, and as she flies out over the deck, he shouts out “Watch out for your Pamcreas!!” (he also calls pancakes, "pam"cakes so it's cute, see?!)
I feel hope for the first time, and tears stream down my face as I see my kids accepting this even before I can.
One day we went to Powell Lake , at a public park- it was seriously the most pristine, mountainous, gorgeous beach I have been to in a long while. Max cajoled me into the water, even though I had to swim in a sarong and tank top (no suit) but once I was in the water, it felt so amazing. The cool, clean water felt soft and silky on my skin.. I wanted to swim forever. I didn't feel like the mom of a kid with Diabetes, I didn't feel afraid. I didn't feel like my life, or Logan's, Gray's or Max's was ruined.
I think I smiled.
I did not get out of the lake for the next three hours.
Max and I swam to a big huge stump that was out in the lake, and climbed up it. Max dared me to jump off, and I wasn't going to, but then I thought.. why the hell not? I jumped off- it was amazing- hitting the water, coming up, seeing Max's huge grin of pride and love.
Jer searched for dr
iftwood, and the boys found a frog that they played with till it was in shock, then we let it go. It kind of struggled, I was worried about it, but then it got it's bearings.As it swam off, Jer said to it- “Hey, YOU get your life back.” No matter how scared that frog was, or how stunned he got – in the end, he got to swim away, back to everything he knew before. We did not have that infinite luxury. Jer and I quietly watched him swim off until he disappeared into the lake. Jer hugged me, and it made me cry.
The next day we found the most beautiful beach I have ever seen in my life.. on Savary Island, which is accessable only by ‘water taxi’. We biked the entire island (no cars allowed- it's a refuge of some sort). I exhilarated in the sights, not only of nature, but of my three boys discovering, playing, splashing, Max helping Gray catch “Fighter Crabs”.
All of our emotions crashed at "pinch time", when Logan again needed to reject Daddy, and cry about his lot in life. He screamed at the ocean "It's NOT FAIR!!!!" So many ups and downs per day leave you feeling exhausted, like a wrung out washcloth, and a thin one at that.
As we biked along Savary Island, I saw some squirrels playing in the trees, jumping from one to the other. Instantly, I was angry- jealous of their carefree existence, but more so, I could just FEEL that they were taking their pancreas for granted. How does a dirty little squirrel on some back asswards island get the great good fortune of having a working pancreas???? Little fuckers!! I knew I hated squirrels, and I especially hate these.
Fuck squirrels, I thought as I pedaled away from them.
Fuck everything.
How can there be divine order when my kid gets to suffer? I fooled myself into thinking I had some control over my life. I fooled myself into thinking the hard part of my life was behind me. I fooled myself by thinking I had a right to a sweet life, unmarred by this type of tragedy, fear, and worry. You know what W said.. "Fool me once. um. Fool me.. the point is, fool me once, I can't get fooled again."
Interesting how Jer and I keep shifting blame, but mostly onto ourselves.
Here is the Blame List
1. I have an autoimmune disorder, so it’s my fault.
2. He had a cleft palate, it’s his fault.
3. I have a fear of needles and blood, so the universe is using my kid to “help me overcome my fears” so it is my fault.
4. He said something in the week previous about healthy kids, and did not knock wood, his fault.
5. I said something about learning to scuba dive, and overcome fears- my fault.
It goes on and on in every quiet moment, new ideas about how this happened, who is to blame, could it have been avoided if we were better parents/had better DNA to offer..?
Now I am scared to go home and face our real life... more when we get there.
Now I am scared to go home and face our real life... more when we get there.
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