Brave - an adjective meaning having or showing courage. In my life, it is also a noun called Chase and Dad.
Yesterday I underwent my first surgery. It was a simple procedure on my wrist to remove a cyst that has been plaguing me for years. As I was prepped for the procedure, I had a plethora of wipes, syringes and IV needles placed into my lap. As I listened to the nurses explain what they were about to do, I thought to myself, "Chase does this every three days. You can do this." So, as the first IV went it, I was brave. I was Chase.
Then, as I was brought into the OR and strapped to the bed, I was Dad. Lord knows how many procedures that man has had. When the nurse started giving me a relaxer, I almost said, "No, I'm good," (hindsight - I highly recommend it). I laid there, relaxed, thinking of the two boys that paved this road for me.
Taking on type 1 has been a lesson in bravery. It's been poking my child's skin 5 or more times a day to get that precious drop of blood. It's piercing his skin with a needle multiple times a day to give him life giving insulin. It is looking at diluted insulin, full strength insulin, and long acting insulin bottles in your fridge and making damn sure you grab the right bottle. It is getting him through his first insulin reaction, then his second, then his third and then realizing that reactions never get easier. It is making the decision to put your 3 year old on an insulin pump when it has never been attempted in the state. It is learning to adjust the pump for highs and lows. It is pump site changes every three days. It is putting him in the care of others - day care, school, play dates. It is allowing yourself to sleep through the night.
Mainly what I've learned these last eight years is that bravery doesn't mean you aren't scared. It means knowing what you need to do to achieve the best outcome. Our journey has never been easy. It's taken a lot of hard work, some luck, and one brave kid. I am brave because he is brave.
Thursday, December 19, 2013
Tuesday, November 05, 2013
A November Attitude
This is a tough month for me. This summer loving girl isn't impressed with the 18 degrees she woke up to this morning. This snow hating girl isn't ready for the rath a North Dakota winter is preparing to unleash upon her. And it's Diabetes Awareness Month.
Ironically, November is the month Chase was diagnosed. I don't need a month to be aware of diabetes. We live with it 24/7. 365. We live it through my dad, too. Last November, I witnessed him have the mother of all insulin reactions. Tomorrow Dad will undergo surgery to have his middle toe removed due to an infection complicated by diabetes. So, screw you Diabetes Awareness Month. Screw you.
Okay, so I do try to remain positive. Really. What other option do I have? What I've learned in the last 8 years is that you can hate something but that won't change the situation. It is what it is. The only way you can change diabetes is by changing your attitude. For me, I write. Sometimes I cry. I find solace in my support group. An occasional glass of wine works, too.
Eight years ago, my mom framed an article from a doctor who stated that diabetes would be cured in 10 years. Although the article is fading, I still think of it everyday. It gives me hope. Some days that is all I need to bring me around. Hope and an 80 degree day.
Ironically, November is the month Chase was diagnosed. I don't need a month to be aware of diabetes. We live with it 24/7. 365. We live it through my dad, too. Last November, I witnessed him have the mother of all insulin reactions. Tomorrow Dad will undergo surgery to have his middle toe removed due to an infection complicated by diabetes. So, screw you Diabetes Awareness Month. Screw you.
Okay, so I do try to remain positive. Really. What other option do I have? What I've learned in the last 8 years is that you can hate something but that won't change the situation. It is what it is. The only way you can change diabetes is by changing your attitude. For me, I write. Sometimes I cry. I find solace in my support group. An occasional glass of wine works, too.
Eight years ago, my mom framed an article from a doctor who stated that diabetes would be cured in 10 years. Although the article is fading, I still think of it everyday. It gives me hope. Some days that is all I need to bring me around. Hope and an 80 degree day.
Monday, October 14, 2013
United
I had a nightmare last week. I dreamt that Chase died from a low blood sugar.
Startled awake, I told myself, "It was just a dream. He's okay. Go back to sleep." Then that other voice in my head questioned, "What if it's not a dream? What if you're supposed to wake up and check him?" So, at 5 in the morning, I crawled into bed next to him and listened to him breath. It was a beautiful sound. Adam Levine could have been in the room singing a ballad just for me and I would still rate the sound of his breath the most wonderful sound in that room.
Relieved, I just lay there listening. Then I realized that I've become the mother in the book Love You Forever. It is inevitable that I will someday drive my car across town with a ladder strapped to the top. I will crawl across the floor of his bedroom, and if he is asleep, really asleep, I will rock him and sing, "Love you forever, like you for always, as long as I'm living, my baby you will be." That somewhat creepy book made sense in that very moment.
Later that day I relayed my dream to Gary. We talked diabetes for a little bit and then he said, "You might want to see what Chase wrote on the calendar."
As I read "Worst day ever in 2005" written on November 29th, my first thought was, "Damn you diabetes. You win today." Then I listened to what Gary told Chase. He told him, "You could look at it as the worst day ever, or you could look at it as the day we finally found out what was wrong. It was the day we knew how to make you feel better. It was the day your life was saved. It is a day to celebrate."
Even though we are closing in on our 8 year diabetes anniversary, we are still a work in progress. It can cut, it can sting, but when we unite, it doesn't win.
And, united, will continue to dream of a cure.
Wednesday, September 11, 2013
Me and Zzzzzzz
Last week, Hallie at The Princess and the Pump gave me the kick in the pants I needed to write again. In her post, Destination Me, she challenged us to start taking care of ourselves. She was going to start with getting more sleep. Sleep. How I've missed you.
I've been meaning to write about sleep. Or lack there of. My precious little boy did not sleep through the night until he was about 9 months old. Or my darling daughter. And my sweet baby boy as well. Evil. All three of them.
Want to know one of the best ways to get on my bad side? Tell me your child slept through the night at 6 weeks old. BOOM - there you are!
Once son number one started sleeping through the night life started to get back to normal. The little bugger did not like his crib. He did not like his toddler bed. He liked to be smack dab in the middle of his mom and dad.
Around 22 months, our sleep was disrupted again. That kid was a kicker and a thrasher - so much so that one of us would eventually have to move to another bed. In hindsight, his restless sleep makes sense - to this day he will kick and thrash with a high blood sugar (in his OWN bed...thank God).
At age two came the diagnosis and the end of sleep for a very long time. Enter sleepless nights worrying about him going low. Or high. Enter baby girl. Enter continuous glucose monitor that wakes you from your slumber. Enter baby boy. Enter &^%ing colic.
Enter studies about the health benefits of uninterrupted sleep to make you lose sleep over losing sleep. A good night's sleep helps lower stress, improves your memory, makes you more alert, helps control your weight, and so on and so on. Sign me up.
We've been working on sleep for a few months now. Realistically, we like the kids to be in bed and asleep by 9. It's hit and miss and we are the kill joy parents in the neighborhood, but sleep is a priority in our household. Even if the sun is still out at 10 pm, Leah Marie! Room darkening curtains, melatonin and white noise are my new best friend.
I stumbled across this image when I was looking for quotes on sleep. It pretty much explains why I don't take care of myself. Most of my sleep has been lost to diabetes - either worrying about it or "managing" it. Although I complain about losing sleep, it has been worth the sleepless nights. Every morning I wake and see those beautiful blue eyes looking back at me, that extra cup of coffee I may need is well worth a sleepless night.
I'm getting there, Hallie. I promise.
I've been meaning to write about sleep. Or lack there of. My precious little boy did not sleep through the night until he was about 9 months old. Or my darling daughter. And my sweet baby boy as well. Evil. All three of them.
Want to know one of the best ways to get on my bad side? Tell me your child slept through the night at 6 weeks old. BOOM - there you are!
Once son number one started sleeping through the night life started to get back to normal. The little bugger did not like his crib. He did not like his toddler bed. He liked to be smack dab in the middle of his mom and dad.
Around 22 months, our sleep was disrupted again. That kid was a kicker and a thrasher - so much so that one of us would eventually have to move to another bed. In hindsight, his restless sleep makes sense - to this day he will kick and thrash with a high blood sugar (in his OWN bed...thank God).
At age two came the diagnosis and the end of sleep for a very long time. Enter sleepless nights worrying about him going low. Or high. Enter baby girl. Enter continuous glucose monitor that wakes you from your slumber. Enter baby boy. Enter &^%ing colic.
Enter studies about the health benefits of uninterrupted sleep to make you lose sleep over losing sleep. A good night's sleep helps lower stress, improves your memory, makes you more alert, helps control your weight, and so on and so on. Sign me up.
We've been working on sleep for a few months now. Realistically, we like the kids to be in bed and asleep by 9. It's hit and miss and we are the kill joy parents in the neighborhood, but sleep is a priority in our household. Even if the sun is still out at 10 pm, Leah Marie! Room darkening curtains, melatonin and white noise are my new best friend.
I stumbled across this image when I was looking for quotes on sleep. It pretty much explains why I don't take care of myself. Most of my sleep has been lost to diabetes - either worrying about it or "managing" it. Although I complain about losing sleep, it has been worth the sleepless nights. Every morning I wake and see those beautiful blue eyes looking back at me, that extra cup of coffee I may need is well worth a sleepless night.
I'm getting there, Hallie. I promise.
Friday, July 19, 2013
Brain Wrapping
A few years ago my coworker, Kevin, put his daughter on speaker phone while she sang us all a funny song. At the end of the song, she said, "Wrap your brain around that!" That kid! That line! "Wrap your brain around that!" Classic.
I liked working next to Kevin. He was witty, charming, sarcastic, and way more warped than me. He was there for me in those first years of Chase's diagnosis. He patiently listened to many a diabetes adventure from me. For some reason, I remember telling him a story about my non-cooperative boy and a shot one day.
And here is the part that hurts.
Really hurts.
At the end of my "Chase was running from us and we had to pin him down to give him a shot" story, he shook his head and said, "I could never do that to my child." Now, if you know Kevin, you know how much he freak'n loves his kids. Although he is a teddy bear, I'm pretty sure he'd claw out your eyes (and other body parts) if you hurt his kids. And here's the crappy part, his son was diagnosed with type 1 almost two years ago.
Wrap your brain around that.
"I could never do that to my child." - I uttered that same damn sentence to myself many times while sitting in the hospital room with Chase. Insulin ratios, carb ratios, carb counting, how to draw insulin, how to give a shot...it was overwhelming. How was I going to do this to my child?
You quickly wrap your brain around the reality of the situation. You have to do it. They are counting on you. Amazingly, you find strength and courage you never knew you had.
In each and every:
shot,
finger poke,
carb counted,
doctor visit and blood draw,
pump site change,
504 meeting with the school,
midnight blood sugar checks
force fed juice or fruit snack
there is love for your child. Unconditional love. Love does come in a bottle.
Wrap your brain around that. I know Kevin and I can.
I liked working next to Kevin. He was witty, charming, sarcastic, and way more warped than me. He was there for me in those first years of Chase's diagnosis. He patiently listened to many a diabetes adventure from me. For some reason, I remember telling him a story about my non-cooperative boy and a shot one day.
And here is the part that hurts.
Really hurts.
At the end of my "Chase was running from us and we had to pin him down to give him a shot" story, he shook his head and said, "I could never do that to my child." Now, if you know Kevin, you know how much he freak'n loves his kids. Although he is a teddy bear, I'm pretty sure he'd claw out your eyes (and other body parts) if you hurt his kids. And here's the crappy part, his son was diagnosed with type 1 almost two years ago.
Wrap your brain around that.
"I could never do that to my child." - I uttered that same damn sentence to myself many times while sitting in the hospital room with Chase. Insulin ratios, carb ratios, carb counting, how to draw insulin, how to give a shot...it was overwhelming. How was I going to do this to my child?
You quickly wrap your brain around the reality of the situation. You have to do it. They are counting on you. Amazingly, you find strength and courage you never knew you had.
In each and every:
shot,
finger poke,
carb counted,
doctor visit and blood draw,
pump site change,
504 meeting with the school,
midnight blood sugar checks
force fed juice or fruit snack
there is love for your child. Unconditional love. Love does come in a bottle.
Wrap your brain around that. I know Kevin and I can.
Monday, June 10, 2013
Best Day Ever
I love age 5. LOVE IT. At this age, she still holds your hand. You receive about 10 "I love you!" cards a day. She is in love with life. Every day she tells you this is her best day ever.
Lately I've been trying to "Live Like Leah". Usually I'm like Homer Simpson in the Simpsons Movie. After being publicly humiliated, Bart tells his dad, "This is the worst day of my life!" Homer, giving his best fatherly advice, tells Bart, "This is the worst day of your life so far."
I've met a lot of families with more than one child with type 1. Everyday I wait for the proverbial other shoe to fall. I analyze everything my little non-type 1ers do. Why are they asking for water in the middle of the night? Why are the peeing so much? They are crabby lately. Why are they so crabby lately? Should I test their blood? When is it going to happen again?
When am I going to experience a day that tops my worst day ever?
I've done all I can to keep that day away. The problem is, there is no prevention. Every year Leah is tested to see if she is developing the auto antibodies to that lead to type 1. This year Cole will start the testing as well. It rips at my heart to see that needle break her skin and take that blood sample. The sample that will take six weeks to analyze - the longest six weeks of my life.
When the letter from the University of Minnesota finally appears in my mailbox, I shake. I search immediately for the "no auto antibodies are present at this time" line. It is my best day ever.
I know a cure is on the horizon. I must think like Leah. I must trust that every is my best day ever. And that tomorrow it will only be better.
Today is the best day of my life, so far.
Lately I've been trying to "Live Like Leah". Usually I'm like Homer Simpson in the Simpsons Movie. After being publicly humiliated, Bart tells his dad, "This is the worst day of my life!" Homer, giving his best fatherly advice, tells Bart, "This is the worst day of your life so far."
I've met a lot of families with more than one child with type 1. Everyday I wait for the proverbial other shoe to fall. I analyze everything my little non-type 1ers do. Why are they asking for water in the middle of the night? Why are the peeing so much? They are crabby lately. Why are they so crabby lately? Should I test their blood? When is it going to happen again?
When am I going to experience a day that tops my worst day ever?
I've done all I can to keep that day away. The problem is, there is no prevention. Every year Leah is tested to see if she is developing the auto antibodies to that lead to type 1. This year Cole will start the testing as well. It rips at my heart to see that needle break her skin and take that blood sample. The sample that will take six weeks to analyze - the longest six weeks of my life.
When the letter from the University of Minnesota finally appears in my mailbox, I shake. I search immediately for the "no auto antibodies are present at this time" line. It is my best day ever.
I know a cure is on the horizon. I must think like Leah. I must trust that every is my best day ever. And that tomorrow it will only be better.
Today is the best day of my life, so far.
Wednesday, May 08, 2013
Guardian
Diabetes - it not only destroys your beta cells, it steals your sleep, too. Last night it was a trip to the bathroom that made me curse it silently and crawl out of bed for a blood sugar check (late night bathroom trips are always an indication of a high blood sugar).
These midnight potty trips always make me think of the first Austin Powers movie where, after being frozen for 30 years, Austin is put in front of a urinal. And he pees. And pees. And pees... Well, you get the picture (if not, click here). As I waited for Chase, I giggled thinking about the movie and it made me wonder what has been good about this disease other than pee jokes?
First of all, it makes you take nothing for granted - especially our health. Thanks to the education we have been given in the human body over the last 7 years, I can safely say, it has made us healthier. As a example, one day I brought a Marie Calendar's pot pie to work for lunch (yum, I know!). Being a diabetes mom, I wondered how many carbs where in that baby's flaky crust. Taking from my education in checking nutritional labels, I was surprised it was only 54 carbs. Then I checked out the serving size - 2. Holy moly! 108 carbs. And over 1,000 calories. I haven't touched one since.
Diabetes makes us stubborn. It doesn't stop us from traveling, eating (except pot pies), or dancing like crazy to whatever is the favorite song of the month in our house. We pretty much tell it, "You can't stop us from living. We will show you."
Diabetes makes us friends. We have been blessed to share this journey with some other amazing type 1 families. If it wasn't for diabetes we wouldn't know them, and for that I am thankful for type 1. They are wonderful moms and dads just as crazy and neurotic about their children as we are about ours. Best of all, their eyes don't glaze over when I talk about insulin pumps, carb ratios, sensitivity factors and ketones.
Diabetes makes us trust. It's one thing to put your child in some one's care, but it's another ball game when they are diabetic. We've come a long way in the trust department. We've even worked up to sleepovers. It hasn't been easy, but we've learned to give up control and learned to trust.
Because of all of the above, we feel. A year ago, while driving to work, this song came on the radio: Guardian by Alanis Morissette. It spoke to me like no other song ever has. After it ended I looked liked Alice Cooper with my "water proof" mascara running down my cheeks. It was a song about Chase and me. It made me sad, but it gave me, for the first time since diagnosis day, a reason. I am not only his mom, I'm his guardian - his label reading, stubborn, trusting guardian with a great support group in her corner.
Guardian
by Alanis Morissette
You, you who has smiled when you're in pain
You who has soldiered through the profane
They were distracted and shut down
So why, why would you talk to me at all
Such words were dishonorable and in vain
Their promise as solid as a fog
And where was your watchman then
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
You, you in the chaos feigning sane
You who has pushed beyond what's humane
Them as the ghostly tumbleweed
And where was your watchman then
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
Now no more smiling mid crestfall
No more managing unmanageables
No more holding still in the hailstorm
Now enter your watchwoman
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
These midnight potty trips always make me think of the first Austin Powers movie where, after being frozen for 30 years, Austin is put in front of a urinal. And he pees. And pees. And pees... Well, you get the picture (if not, click here). As I waited for Chase, I giggled thinking about the movie and it made me wonder what has been good about this disease other than pee jokes?
Diabetes makes us stubborn. It doesn't stop us from traveling, eating (except pot pies), or dancing like crazy to whatever is the favorite song of the month in our house. We pretty much tell it, "You can't stop us from living. We will show you."
Diabetes makes us friends. We have been blessed to share this journey with some other amazing type 1 families. If it wasn't for diabetes we wouldn't know them, and for that I am thankful for type 1. They are wonderful moms and dads just as crazy and neurotic about their children as we are about ours. Best of all, their eyes don't glaze over when I talk about insulin pumps, carb ratios, sensitivity factors and ketones.
Diabetes makes us trust. It's one thing to put your child in some one's care, but it's another ball game when they are diabetic. We've come a long way in the trust department. We've even worked up to sleepovers. It hasn't been easy, but we've learned to give up control and learned to trust.
Because of all of the above, we feel. A year ago, while driving to work, this song came on the radio: Guardian by Alanis Morissette. It spoke to me like no other song ever has. After it ended I looked liked Alice Cooper with my "water proof" mascara running down my cheeks. It was a song about Chase and me. It made me sad, but it gave me, for the first time since diagnosis day, a reason. I am not only his mom, I'm his guardian - his label reading, stubborn, trusting guardian with a great support group in her corner.
Guardian
by Alanis Morissette
You, you who has smiled when you're in pain
You who has soldiered through the profane
They were distracted and shut down
So why, why would you talk to me at all
Such words were dishonorable and in vain
Their promise as solid as a fog
And where was your watchman then
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
You, you in the chaos feigning sane
You who has pushed beyond what's humane
Them as the ghostly tumbleweed
And where was your watchman then
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
Now no more smiling mid crestfall
No more managing unmanageables
No more holding still in the hailstorm
Now enter your watchwoman
I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian
Wednesday, April 10, 2013
Are You There God? It's Me, Susan.
There are two topics I avoid in this blog - politics and religion. I stay clear of politics because some people feel the incessant need to change me. That's not going to happen, I like what I am.
Then there is religion. I was raised Lutheran. Gary was raised Catholic (he says he's a recovering Catholic). So, therefore, we are members of the United Church of Christ (it seems to be a theme). A vast majority of my friends are Catholic, some are Baptist, Evangelical, Lutheran and even Hindu. I have a few agnostic and atheist friends as well. Faith fascinates me. Faith infuriates me.
There is a saying that God only gives you what you can handle. Well, lately, I kind of feel like I've been given enough. I often ask God, "Isn't diabetes enough? Do I really have to deal with all this other shit?" Even when trying to get away from it, it's always there.
Gary and I were able to finally take a vacation together after 10 years. No kids. Just us in sunny Las Vegas. It was the first time in 7 years we were 1300 miles away and in a different state from Chase. It was a BIG deal. He was in the expert care of my parents so Gary and I never once worried about regular blood testing, carb counting, etc. We didn't even talk about diabetes, until the boat ride.
I was so looking forward to the gondola ride. It was the main reason I picked the Venetian Hotel. (I've come to the conclusion that I will probably never make it to my dream destination of Venice, so I'll have to settle for a themed Vegas hotel.) So, we board the boat with another couple and the gondolier serenades us with song (yeah, it was cool). As we approach a tunnel, she instructs us that if we make a wish and kiss in the tunnel, it will bring good luck.
Well, you can guess what I wished for which then took me into that dark place. The one that wondered what the other couple sitting across from me wished for. Did they wish for something fun, crazy or extravagant? A few minutes after departing the ride, I turned to Gary with tears in my eyes and asked, "Did we wish for the same thing." With the squeeze of his hand, the answer was yes.
I used to believe everything happens for a reason. Now I just feel like Charlie Brown. Every fall Lucy promises to hold a football for Charlie Brown to kick, and every year she pulls it away as he follows through, causing him to fly in the air and land painfully on his back. I wish I had the faith and belief that I see my friends have. I wish I had the faith and belief that I try to show my friends. Right now, I'd just like to kick the damn ball.
Then there is religion. I was raised Lutheran. Gary was raised Catholic (he says he's a recovering Catholic). So, therefore, we are members of the United Church of Christ (it seems to be a theme). A vast majority of my friends are Catholic, some are Baptist, Evangelical, Lutheran and even Hindu. I have a few agnostic and atheist friends as well. Faith fascinates me. Faith infuriates me.
There is a saying that God only gives you what you can handle. Well, lately, I kind of feel like I've been given enough. I often ask God, "Isn't diabetes enough? Do I really have to deal with all this other shit?" Even when trying to get away from it, it's always there.
Gary and I were able to finally take a vacation together after 10 years. No kids. Just us in sunny Las Vegas. It was the first time in 7 years we were 1300 miles away and in a different state from Chase. It was a BIG deal. He was in the expert care of my parents so Gary and I never once worried about regular blood testing, carb counting, etc. We didn't even talk about diabetes, until the boat ride.
I was so looking forward to the gondola ride. It was the main reason I picked the Venetian Hotel. (I've come to the conclusion that I will probably never make it to my dream destination of Venice, so I'll have to settle for a themed Vegas hotel.) So, we board the boat with another couple and the gondolier serenades us with song (yeah, it was cool). As we approach a tunnel, she instructs us that if we make a wish and kiss in the tunnel, it will bring good luck.
Well, you can guess what I wished for which then took me into that dark place. The one that wondered what the other couple sitting across from me wished for. Did they wish for something fun, crazy or extravagant? A few minutes after departing the ride, I turned to Gary with tears in my eyes and asked, "Did we wish for the same thing." With the squeeze of his hand, the answer was yes.
I used to believe everything happens for a reason. Now I just feel like Charlie Brown. Every fall Lucy promises to hold a football for Charlie Brown to kick, and every year she pulls it away as he follows through, causing him to fly in the air and land painfully on his back. I wish I had the faith and belief that I see my friends have. I wish I had the faith and belief that I try to show my friends. Right now, I'd just like to kick the damn ball.
Tuesday, March 12, 2013
Burn Notice
This has been a tough diabetes year. Luckily, it hasn't been due to endless nights of sleep lost trying to reign in crazy numbers (that's been the previous 6 years). It hasn't even been due to battles with Blue Cross/Blue Shield. Heck, they have yet to make me me cry this year (knock on wood)! No, it's due to the dreaded burnout.
Unfortunately, I've been expecting this time would come - the time when he's just had it with type 1. This school year he has made it abundantly clear he's tired of it all - the questions from classmates and well-meaning teachers, nurses, and the school counselor. Tired of testing his blood 5 times a day. Tired of having to pull his insulin pump out after every meal. Tired.
I've been asked (twice) lately what it is like to be "normal" - what is it like to not have diabetes?
It is an easy, yet a tough question. I don't want to sugar coat (pun intended) what he is going through. I am honest. I told him, "Well, for starters, I don't have to test my blood before I eat every meal. I don't have to give myself insulin for everything I eat. I don't have my parents on my butt all the time saying, 'Test your blood. Did you give yourself insulin?'" I let him know that I have no idea what it feels like to have a high or low blood sugar.
And then I told him I wish I did.
I told him that diabetes hurts me, too. It hurts that my beautiful son has it and I don't. As his mom, it hurts me to see him hurting. It hurts me to know that I can't make this better. And, if I had the opportunity, I'd take it from him. Right. Now.
He may only be 9, and not yet a parent, but I saw that he understood we have something in common. Although we live in different worlds, we aren't alone in how diabetes can hurt you. Although it didn't take away his pain, he knows he's not alone. He's never alone.
Unfortunately, I've been expecting this time would come - the time when he's just had it with type 1. This school year he has made it abundantly clear he's tired of it all - the questions from classmates and well-meaning teachers, nurses, and the school counselor. Tired of testing his blood 5 times a day. Tired of having to pull his insulin pump out after every meal. Tired.
I've been asked (twice) lately what it is like to be "normal" - what is it like to not have diabetes?
It is an easy, yet a tough question. I don't want to sugar coat (pun intended) what he is going through. I am honest. I told him, "Well, for starters, I don't have to test my blood before I eat every meal. I don't have to give myself insulin for everything I eat. I don't have my parents on my butt all the time saying, 'Test your blood. Did you give yourself insulin?'" I let him know that I have no idea what it feels like to have a high or low blood sugar.
And then I told him I wish I did.
I told him that diabetes hurts me, too. It hurts that my beautiful son has it and I don't. As his mom, it hurts me to see him hurting. It hurts me to know that I can't make this better. And, if I had the opportunity, I'd take it from him. Right. Now.
He may only be 9, and not yet a parent, but I saw that he understood we have something in common. Although we live in different worlds, we aren't alone in how diabetes can hurt you. Although it didn't take away his pain, he knows he's not alone. He's never alone.
Thursday, February 07, 2013
Diminished
I feel that society is telling me that I'm suppose to feel lucky that my child only has diabetes. I'm suppose to tell my 9 year old that things could be worse. I am to diminish all his pain, anger and frustration from the last 7 years because he "just has diabetes". Will I? HELL NO.
My child has every right to feel sorry for himself. He has endured 13,000 pokes to his fingers and toes. His insulin pump needle has been changed over 300 times. He's had over 30 blood draws. Everything he's eaten in the last 7 years has been monitored. Everything. He's had to take insulin for every carbohydrate eaten. Never a break.
His pump is attached to his body 24/7. It is removed to bathe or swim and then it is immediately attached back to his body. Why? Because he would die without it. Melodramatic? No, truth. Without insulin he would go into diabetic ketoacidosis (DKA) in 2 days. In less than a week he would be dead. I am to be thankful for this disease?
I've seen him in DKA. It was November 29, 2005. He was dehydrated and lethargic laying on a hospital bed. He was vomiting. He was dying and he needed insulin. After 4 days in the hospital & on an insulin regimine he was back. He came home and Gary and I became full time pancreases. We've worked our asses off to make sure we never see DKA again.
Now, do I talk about Chase's journey because I feel sorry for myself? Because I want attention? HELL NO. I scream Chase's story from the roof top because I want people educated about this disease. I want people who have healthy children to not take for granted one second their health and well being because things can change. For the worse.
So, the moral of this post is: never, ever, ever tell someone that things could be worse. You have NO idea what they have gone through. You have no idea what they are currently going through. We know things could be worse. Comparing our suffering to someone else's is futile.
But, if we want to compare things, chances are, I hug my kids tighter at night than you hug yours. I take nothing for granted. I can thank "just diabetes" for that.
My child has every right to feel sorry for himself. He has endured 13,000 pokes to his fingers and toes. His insulin pump needle has been changed over 300 times. He's had over 30 blood draws. Everything he's eaten in the last 7 years has been monitored. Everything. He's had to take insulin for every carbohydrate eaten. Never a break.
His pump is attached to his body 24/7. It is removed to bathe or swim and then it is immediately attached back to his body. Why? Because he would die without it. Melodramatic? No, truth. Without insulin he would go into diabetic ketoacidosis (DKA) in 2 days. In less than a week he would be dead. I am to be thankful for this disease?
I've seen him in DKA. It was November 29, 2005. He was dehydrated and lethargic laying on a hospital bed. He was vomiting. He was dying and he needed insulin. After 4 days in the hospital & on an insulin regimine he was back. He came home and Gary and I became full time pancreases. We've worked our asses off to make sure we never see DKA again.
Now, do I talk about Chase's journey because I feel sorry for myself? Because I want attention? HELL NO. I scream Chase's story from the roof top because I want people educated about this disease. I want people who have healthy children to not take for granted one second their health and well being because things can change. For the worse.
So, the moral of this post is: never, ever, ever tell someone that things could be worse. You have NO idea what they have gone through. You have no idea what they are currently going through. We know things could be worse. Comparing our suffering to someone else's is futile.
But, if we want to compare things, chances are, I hug my kids tighter at night than you hug yours. I take nothing for granted. I can thank "just diabetes" for that.
Friday, January 11, 2013
Passion
I shouldn't be writing. It's too soon. It's too painful. It's coming back. But I need to do it.
18 years ago. I remember it like yesterday. I was home from college. I was watching Days of Our Lives. The phone rang. It was my mom. She was in Minneapolis with my dad, sister and brother-in-law, John. Mom asked me what I was doing. I could tell something was wrong. Then she was gone. My sister came on the phone and said, "Susan, Dad...". Then she was gone. Then it was John. "Susan, your dad has had a stroke." I don't remember what he said after that.
What the hell? He's 49. What the hell?
The story I've heard is that he left the hotel room to get batteries at the nearby gas station. Then it hit. He was able to walk back to the hotel. He's told me that he remembers leaning against a semi trailer as he tried to walk back. People asked him if he was drunk. My dad was having a stroke and people were asking him if he was drunk.
I don't remember how long he was in the hospital in Minneapolis. It was too long. He came back to North Dakota for rehabilitation in Grand Forks at the Rehabilitation hospital. Luckily, I was going to school at UND at the time and I was able to see him everyday.
Now, 18 years later, he is back there. And due to a fricking winter storm, here I am - not with him.
What caused his stoke? Diabetes. F***ing diabetes. It was the first thing I thought of when Chase was diagnosed at the age of 2. STROKES. I really hate strokes. REALLY.
If you want to know why I am so passionate about finding a cure, this is why. I've seen first hand what diabetes can do to the human body. Thirteen years ago I remember hugging my dad goodnight before he had open heart surgery - yet another complication due to diabetes. I didn't know if that would be the last time I'd ever see him again.
What my dad has been through has made me the type 1 diabetes mom that I am today. Neurotic. Obsessive. Passionate. And, today, angry and sad.
My dad was a teacher. A kind of crazy-fun teacher (I had him for Shop and Graphic Arts, so I can say this). One day he brings up from storage an old winter coat that belonged to my sister. We ask him what he's doing. He says there is a girl in one of his classes that he's worried about. She needs a better winter coat.
That's my dad. Diabetes can take a lot from us, but it can't take who we are. It may affect the mechanics of your heart, but not the beauty of your heart.
There is no cure for diabetes, but I do believe in the power of prayer. Please pray for my dad for a quick and speedy recovery.
18 years ago. I remember it like yesterday. I was home from college. I was watching Days of Our Lives. The phone rang. It was my mom. She was in Minneapolis with my dad, sister and brother-in-law, John. Mom asked me what I was doing. I could tell something was wrong. Then she was gone. My sister came on the phone and said, "Susan, Dad...". Then she was gone. Then it was John. "Susan, your dad has had a stroke." I don't remember what he said after that.
What the hell? He's 49. What the hell?
The story I've heard is that he left the hotel room to get batteries at the nearby gas station. Then it hit. He was able to walk back to the hotel. He's told me that he remembers leaning against a semi trailer as he tried to walk back. People asked him if he was drunk. My dad was having a stroke and people were asking him if he was drunk.
I don't remember how long he was in the hospital in Minneapolis. It was too long. He came back to North Dakota for rehabilitation in Grand Forks at the Rehabilitation hospital. Luckily, I was going to school at UND at the time and I was able to see him everyday.
Now, 18 years later, he is back there. And due to a fricking winter storm, here I am - not with him.
What caused his stoke? Diabetes. F***ing diabetes. It was the first thing I thought of when Chase was diagnosed at the age of 2. STROKES. I really hate strokes. REALLY.
If you want to know why I am so passionate about finding a cure, this is why. I've seen first hand what diabetes can do to the human body. Thirteen years ago I remember hugging my dad goodnight before he had open heart surgery - yet another complication due to diabetes. I didn't know if that would be the last time I'd ever see him again.
What my dad has been through has made me the type 1 diabetes mom that I am today. Neurotic. Obsessive. Passionate. And, today, angry and sad.
My dad was a teacher. A kind of crazy-fun teacher (I had him for Shop and Graphic Arts, so I can say this). One day he brings up from storage an old winter coat that belonged to my sister. We ask him what he's doing. He says there is a girl in one of his classes that he's worried about. She needs a better winter coat.
That's my dad. Diabetes can take a lot from us, but it can't take who we are. It may affect the mechanics of your heart, but not the beauty of your heart.
There is no cure for diabetes, but I do believe in the power of prayer. Please pray for my dad for a quick and speedy recovery.
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