So I was thinking last night about something. Our hands reveal a lot about who we are as people. I look at my own hands and I see a scar from when I cut myself as a kid...I see a few callouses from where I hold my crochet hook...I see Mom hands. My hands are strong and yet tired...soft for the most part and yet tough in other ways. These hands have held my daughter when she cried as a baby and these hands have held her tiny hand as we crossed the street together. These hands have squeezed blood from her fingertips more times than I can count...they've injected her with insulin and changed her pump site. These hands have brushed the hair from her eyes and squeezed her cheeks as she smiles. These hands have created beauty. These hands have loved.
I look at my husbands hands and I see rough hard working calloused and scarred hands. Hands that work hard every single day to provide for us. I see hands that have held our newborn daughter...cuddled her when she was afraid...hands that have wiped away tears from his own eyes as he beamed with pride at the girl she has become. His hands have held mine in moments of doubt...moments of worry...moments of love. His hands are strong and safe.
I look at my daughters hands and I see determination. I see the tiny holes in her fingertips...memories of how much she's endured and how far she's come on this journey. Her hands have created beauty unimaginable already. Her hands are soft and yet more sure and steady than I could hope for. Her hands are an extension of her humour as she tells a story making me laugh until tears fall uncontrollably from my eyes. Her hands have patted my back as she sought to comfort me when I have been unwell or sad or worried. Her hands have pet our cat...loving her like no one can. Her hands have endured so much pain in her short 12 years...and yet when I look at them, I see all the potential in the world is right at her fingertips. The lines on her palms...the way they embrace any challenge that comes her way. I look at her hands and I see power.
Our hands together represent what family means to me. Love, laughter, strength, and grace.
Monday, March 7, 2016
Wednesday, August 26, 2015
It's NOT my disease
I've learned a few things over the years of being a D-Mom...and there's one in particular that resonates the most with where we are at in life now.
This is her disease...not mine. Yes, I have spent the past seven years injecting her, bolusing her, counting carbs, battling the ugly blood sugar numbers, stressing over things, constantly thinking about and trying to predict trends and find patterns and relentlessly searching for that perfect balance to keep her healthy. BUT, it's her disease...not mine. SHE is the one living with it. She is the one feeling the injections and feeling the effects of highs and lows. She is the one wearing the pump...having to explain what it is to those she encounters every day. She is the one living her life in spite of the fact that her pancreas no longer functions as it should.
It's HER disease...not mine. She is the one who will live with it every single second of every single day for the rest of her life or until a cure is found. I am merely a supporting player in this game. I started out holding the reigns and doing it all for her. As she is growing up, I am the teacher...showing her how things work...giving her helpful hints...offering advice...support...guidance....showing her what has worked in each situation I've encountered thus far. Soon, I will be handing the reigns completely over to her and letting her fly solo with her management....because I believe one of the greatest gifts a parent can give their child is the gift of independence.
Yes, I will ALWAYS be there for her to wrap my hands around hers whenever she needs help hanging on to those reigns...no matter how old she gets...because the job of a D-Mom never truly ends....hell, the job of a MOM never truly ends...it's a bond that can't be broken.
Yes, I feel pain when I see her struggle with blood sugar numbers...I feel pain when I change her pump site and she cries out or winces in pain. I FEEL pain when these things happen...because I am her Mom...she is my child...and what hurts her, hurts me.
BUT, it is her disease....not mine.
I feel a person...no matter child or adult...deserves the full and complete respect and acknowledgement of living with this disease. It's ridiculously hard sometimes and I will never fully understand what it is like.....
Because it's not MY disease....it's hers.
I am in awe of the strength...the determination...the acceptance...the power they exude. I think it is incredibly inspiring and I am greatful for the chance to be around the light they shine out on the world around them.
This is her disease...not mine. Yes, I have spent the past seven years injecting her, bolusing her, counting carbs, battling the ugly blood sugar numbers, stressing over things, constantly thinking about and trying to predict trends and find patterns and relentlessly searching for that perfect balance to keep her healthy. BUT, it's her disease...not mine. SHE is the one living with it. She is the one feeling the injections and feeling the effects of highs and lows. She is the one wearing the pump...having to explain what it is to those she encounters every day. She is the one living her life in spite of the fact that her pancreas no longer functions as it should.
It's HER disease...not mine. She is the one who will live with it every single second of every single day for the rest of her life or until a cure is found. I am merely a supporting player in this game. I started out holding the reigns and doing it all for her. As she is growing up, I am the teacher...showing her how things work...giving her helpful hints...offering advice...support...guidance....showing her what has worked in each situation I've encountered thus far. Soon, I will be handing the reigns completely over to her and letting her fly solo with her management....because I believe one of the greatest gifts a parent can give their child is the gift of independence.
Yes, I will ALWAYS be there for her to wrap my hands around hers whenever she needs help hanging on to those reigns...no matter how old she gets...because the job of a D-Mom never truly ends....hell, the job of a MOM never truly ends...it's a bond that can't be broken.
Yes, I feel pain when I see her struggle with blood sugar numbers...I feel pain when I change her pump site and she cries out or winces in pain. I FEEL pain when these things happen...because I am her Mom...she is my child...and what hurts her, hurts me.
BUT, it is her disease....not mine.
I feel a person...no matter child or adult...deserves the full and complete respect and acknowledgement of living with this disease. It's ridiculously hard sometimes and I will never fully understand what it is like.....
Because it's not MY disease....it's hers.
I am in awe of the strength...the determination...the acceptance...the power they exude. I think it is incredibly inspiring and I am greatful for the chance to be around the light they shine out on the world around them.
Tuesday, June 30, 2015
Crossfit or Crosstwit?
In light of the CEO of Crossfit, Mr. Greg Glassman, tweeting some ignorance about diabetes the other day....I thought I would share just a few things that I have heard over the years...so I can set the record straight.
Did she get diabetes because she ate too much sugar (drank too much juice/pop? Ate too much fast food? Ate too much ice cream? Had too many candy bars?)?
No, that's not why my kid got diabetes. In fact that's not why anyone gets type 1 diabetes. It is an auto-immune disease and her pancreas no longer produces insulin because her body one day decided to attack the cells that produce insulin. It just happened. She was only 4 yrs old and had never even had a soda before in her life actually.
Did you hear about that magic okra/cinammon/hemp seed oil/ moss that grows on a single majestic tree found in the remote rainforest of Costa Rica? It will cure her diabetes. I know because my sisters neighbours step brothers teacher from 1962 has a cat that is best friends with this one dog that had diabetes once and then he ate that stuff and now he doesn't.
Yes.....yes, I've heard of that stuff....and your sisters neighbours step brothers teachers cats best friend is a liar. Stop telling people that. Instead tell them that there is no cure yet, but you know this one chick who is raising money for people actually looking for a real cure and she sure could use your help.
Should she be eating that?
Yes....she can eat anything she wants....as long as she gives herself insulin for it.....except for poison.....and beets...cause beets are just gross.
How long has she had "diabeetus?"
Unless you're Wilfred Brimley, you're not allowed to call it that. It's "diabetes".....pronounced "dye-a-beet-eez".....and she's had it for seven years now. Long time, eh? And she eats sugar every single day. Look how healthy she looks! Weird, right?
So, when will she outgrow it?
Never. The answer is never. She will have it until a cure is found....so how about that $5 in your pocket? I'll gladly take that off your hands for you and give it to people looking for a real cure.
So, can I just get her some of that sugar-free candy instead so she can still feel included and like she still gets to be a kid?
Sure, you can get her whatever you'd like...but I probably wouldn't waste your money on the sugar-free stuff cause it will just wind up in the garbage. It still has carbs in it...so she'd still have to give herself insulin for it...and the sugar-free stuff is fake chemically manufactured gross tasting stomache inducing garbage...so I prefer to just give her the real stuff.
Awww I feel so bad for her...such a shame that she has to go through all of this...I could never do it or I could never stick my kid with needles every day.
Don't feel bad. She doesn't need pity. She needs you to learn the facts about this disease so she doesn't have to encounter ignorance every day. And yes.....yes you could do it...and you would do it. She does it every single day.
At the risk of sounding like a broken record, I just want to say that I've heard the ignorance over the years more times than I care to think about. It used to piss me off every time. Now, it just exhausts me. It makes me sigh. It makes me sad to know that people like Mr Glassman, who have even a slight amount of clout or power in their public voice, have the ability to spew their ignorance out into the world and shatter every single moment that I fought...every moment that I spoke up...every moment that I screamed and cried and shouted the TRUTHS about this disease from the rooftops. He had a fancy to tweet something that he is misinformed on...probably just to benefit his company...which lines his pockets with obscene amounts of cash.....and his tweet had the power to shatter everything I fight for every day for my daughter.
Education is EVERYTHING, my friends. If you're unsure, ask. If you want to learn, ask.
Mr. Glassman, I hope that diabetes never invades your life like it ours. I suggest you pause for a moment before you feel the urge to spread your ignorance to your followers...pause....open a book....google diabetes...call your local JDRF...ask me. I will gladly share our truths with you.
Did she get diabetes because she ate too much sugar (drank too much juice/pop? Ate too much fast food? Ate too much ice cream? Had too many candy bars?)?
No, that's not why my kid got diabetes. In fact that's not why anyone gets type 1 diabetes. It is an auto-immune disease and her pancreas no longer produces insulin because her body one day decided to attack the cells that produce insulin. It just happened. She was only 4 yrs old and had never even had a soda before in her life actually.
Did you hear about that magic okra/cinammon/hemp seed oil/ moss that grows on a single majestic tree found in the remote rainforest of Costa Rica? It will cure her diabetes. I know because my sisters neighbours step brothers teacher from 1962 has a cat that is best friends with this one dog that had diabetes once and then he ate that stuff and now he doesn't.
Yes.....yes, I've heard of that stuff....and your sisters neighbours step brothers teachers cats best friend is a liar. Stop telling people that. Instead tell them that there is no cure yet, but you know this one chick who is raising money for people actually looking for a real cure and she sure could use your help.
Should she be eating that?
Yes....she can eat anything she wants....as long as she gives herself insulin for it.....except for poison.....and beets...cause beets are just gross.
How long has she had "diabeetus?"
Unless you're Wilfred Brimley, you're not allowed to call it that. It's "diabetes".....pronounced "dye-a-beet-eez".....and she's had it for seven years now. Long time, eh? And she eats sugar every single day. Look how healthy she looks! Weird, right?
So, when will she outgrow it?
Never. The answer is never. She will have it until a cure is found....so how about that $5 in your pocket? I'll gladly take that off your hands for you and give it to people looking for a real cure.
So, can I just get her some of that sugar-free candy instead so she can still feel included and like she still gets to be a kid?
Sure, you can get her whatever you'd like...but I probably wouldn't waste your money on the sugar-free stuff cause it will just wind up in the garbage. It still has carbs in it...so she'd still have to give herself insulin for it...and the sugar-free stuff is fake chemically manufactured gross tasting stomache inducing garbage...so I prefer to just give her the real stuff.
Awww I feel so bad for her...such a shame that she has to go through all of this...I could never do it or I could never stick my kid with needles every day.
Don't feel bad. She doesn't need pity. She needs you to learn the facts about this disease so she doesn't have to encounter ignorance every day. And yes.....yes you could do it...and you would do it. She does it every single day.
At the risk of sounding like a broken record, I just want to say that I've heard the ignorance over the years more times than I care to think about. It used to piss me off every time. Now, it just exhausts me. It makes me sigh. It makes me sad to know that people like Mr Glassman, who have even a slight amount of clout or power in their public voice, have the ability to spew their ignorance out into the world and shatter every single moment that I fought...every moment that I spoke up...every moment that I screamed and cried and shouted the TRUTHS about this disease from the rooftops. He had a fancy to tweet something that he is misinformed on...probably just to benefit his company...which lines his pockets with obscene amounts of cash.....and his tweet had the power to shatter everything I fight for every day for my daughter.
Education is EVERYTHING, my friends. If you're unsure, ask. If you want to learn, ask.
Mr. Glassman, I hope that diabetes never invades your life like it ours. I suggest you pause for a moment before you feel the urge to spread your ignorance to your followers...pause....open a book....google diabetes...call your local JDRF...ask me. I will gladly share our truths with you.
Tuesday, June 2, 2015
The Meaning of Why
You've been doing this for so long that it shouldn't bother you anymore. The ugly a1c number...the high blood sugar that won't quit...the never ending assembly line of pump site changes and needles and trying to decipher why a certain blood sugar occurred...the why of it all...the why.....sigh...the why.
In the beginning of this life, the why meant something different to me. Why did my kid have to get this? Why did this happen to her? And now....nearly 7 years later, the why is usually more of a WHY the hell did this stupid blood sugar number happen? Where did I go wrong? Did I count carbs incorrectly? Was it the rainy weather? A growth spurt? Hormones? Why? Why dammit? I just wanna know why so I can change it so it doesn't happen again!
Sometimes life seems to be a vicious cycle of why's....interspersed with making dinner and driving her to gymnastics lessons.
I'm sure I'm just having a pity party tonight...table for one! Amy, your table is ready! Nonetheless, here I am pissed off at the fact that hot tears are slowly leaking from my eyes. I'm pissed off that I feel like I failed at being her pancreas the past couple months. I'm pissed off at the ugly a1c this time. I'm pissed off that I'm letting the number get to me this time. I'm pissed off at hormones and growth spurts and the fact that pancreating an 11 yr old girl is SO hard. I'm pissed off that I feel like people don't care anymore. I feel like they expect me to always make jokes and be funny and laugh it all off. When in reality, all I needed today was for someone to hug me and say hey....you did good kid...I see you trying and it's totally ok to be pissed off for a minute.
Just because I'm not new to this game, doesn't mean that I don't ever need a moment to be pissed. It doesn't mean I don't need a hug. It doesn't mean I don't need a friend to be there for a second.
Just because I'm not new, doesn't mean that it still doesn't hurt once in a while.
Sigh.
Well, now that I got that out....I think I'll take my seat at the pity party and browse the appetizer selection....and maybe even the wine list...because, ya know.....wine not, right?
In the beginning of this life, the why meant something different to me. Why did my kid have to get this? Why did this happen to her? And now....nearly 7 years later, the why is usually more of a WHY the hell did this stupid blood sugar number happen? Where did I go wrong? Did I count carbs incorrectly? Was it the rainy weather? A growth spurt? Hormones? Why? Why dammit? I just wanna know why so I can change it so it doesn't happen again!
Sometimes life seems to be a vicious cycle of why's....interspersed with making dinner and driving her to gymnastics lessons.
I'm sure I'm just having a pity party tonight...table for one! Amy, your table is ready! Nonetheless, here I am pissed off at the fact that hot tears are slowly leaking from my eyes. I'm pissed off that I feel like I failed at being her pancreas the past couple months. I'm pissed off at the ugly a1c this time. I'm pissed off that I'm letting the number get to me this time. I'm pissed off at hormones and growth spurts and the fact that pancreating an 11 yr old girl is SO hard. I'm pissed off that I feel like people don't care anymore. I feel like they expect me to always make jokes and be funny and laugh it all off. When in reality, all I needed today was for someone to hug me and say hey....you did good kid...I see you trying and it's totally ok to be pissed off for a minute.
Just because I'm not new to this game, doesn't mean that I don't ever need a moment to be pissed. It doesn't mean I don't need a hug. It doesn't mean I don't need a friend to be there for a second.
Just because I'm not new, doesn't mean that it still doesn't hurt once in a while.
Sigh.
Well, now that I got that out....I think I'll take my seat at the pity party and browse the appetizer selection....and maybe even the wine list...because, ya know.....wine not, right?
Wednesday, March 18, 2015
Under Pressure
Lately I've been thinking about the early days after Emma's diagnosis...how I would feel a lot of pressure from others about putting her on an insulin pump. It seemed like everywhere I turned, I was bombarded with people telling me that I NEEDED to get her on one...how it was so much easier...how I was missing out...depriving her of normalcy. I tried to take it all with a grain of salt...but I must admit sometimes it was a little overboard and I let it make me feel like I was a bad parent.
Now that she has been pumping for almost 4 years now, I see the same thing happening online to other people. I see the pump pushers trying to convince non-pumpers to switch over to their side. I always try to keep my distance from discussions like that unless I'm directly asked for my opinion because I remember that feeling of pressure. Yes, I LOVE Emma's Animas pump and I know that it has been a game changer and made life so much easier....but I am also a firm believer that everyone needs to do what works best for them...be it pumping or injections. If they decide to switch from one to the other...that's entirely their own decision and they shouldn't feel any type of pressure from others...fellow d-parents or doctors or anyone.
I think we have moved into a second phase of pressure these days unfortunately. I seem to be a magnet for people suggesting in one way or another that I should get Emma a CGM (continuous glucose monitor). Just to clarify, I think they are fantastic devices as well...however...Emma has made it quite clear that she does not want another device attached to her body 24/7.....so as her Mom, I must respect her wishes...because it is in fact HER body.
I'm familiar with this type of pressure now. We've been at this for a lot of years. I know that people generally have the best of intentions when they make "suggestions" as to what we should be doing or not doing in our diabetes management. I get it. It's human nature to want to help others who are going through the same experiences you are. If something works for you, of course you want to see it work for someone else, right?
I wish though....that life in our little world with diabetes along for the ride could be a little less about pressuring others to do what you do....and more about embracing the beautiful fact that we both somehow manage diabetes differently and still make it work.
Now that she has been pumping for almost 4 years now, I see the same thing happening online to other people. I see the pump pushers trying to convince non-pumpers to switch over to their side. I always try to keep my distance from discussions like that unless I'm directly asked for my opinion because I remember that feeling of pressure. Yes, I LOVE Emma's Animas pump and I know that it has been a game changer and made life so much easier....but I am also a firm believer that everyone needs to do what works best for them...be it pumping or injections. If they decide to switch from one to the other...that's entirely their own decision and they shouldn't feel any type of pressure from others...fellow d-parents or doctors or anyone.
I think we have moved into a second phase of pressure these days unfortunately. I seem to be a magnet for people suggesting in one way or another that I should get Emma a CGM (continuous glucose monitor). Just to clarify, I think they are fantastic devices as well...however...Emma has made it quite clear that she does not want another device attached to her body 24/7.....so as her Mom, I must respect her wishes...because it is in fact HER body.
I'm familiar with this type of pressure now. We've been at this for a lot of years. I know that people generally have the best of intentions when they make "suggestions" as to what we should be doing or not doing in our diabetes management. I get it. It's human nature to want to help others who are going through the same experiences you are. If something works for you, of course you want to see it work for someone else, right?
I wish though....that life in our little world with diabetes along for the ride could be a little less about pressuring others to do what you do....and more about embracing the beautiful fact that we both somehow manage diabetes differently and still make it work.
Sunday, February 8, 2015
Cake
Every year when I blow out the candles on my birthday cake, I always wish for a cure for diabetes.
I see the flames twinkling and casting shadows across the pretty flowers made of icing.
I squeeze my eyes shut tight.
I say the words in my head, "I wish for it to happen this year...please let it happen this year...let this year be the year a cure happens."
Every year I do this.
I know some people probably think it's silly or ridiculous...a waste of a wish...juvenile...or stupid.
I still do it every year though.
I turned 38 today (technically yesterday now at this point of the night) and it was such an incredible day. I spent time with my little family and really saw them...I wasn't distracted by crochet orders or needing to wash the dishes in the sink...or even by the fact that I am another year older. I saw them. I saw my husband...his smile...his eyes...the way he looks at me. I saw my daughter...the dimples in her cheeks as she laughed...the light in her eyes as she handed me a bracelet and card she made for me. I saw them...really saw them.
Today was a good day...amazing actually...one that I will think about years from now and smile.
Yes, diabetes was there...it's always there...sometimes more in the spotlight than I'd like...but for the most part after all these years, I've learned how to see everything else first. I don't mean I ignore diabetes now...because obviously I don't. I mean that I have learned how to see her dimples....her eyes...the way she walks just like me...the grin that spreads across her face when she reads something funny and she doesn't know I can see her. I see these things first...I see these things in the spotlight.
No matter how many more birthday wishes I choose to use on a cure, I know that as I am saying the wish in my head and blowing out those twinkling flames....I will see her face in my mind...smiling.
I see the flames twinkling and casting shadows across the pretty flowers made of icing.
I squeeze my eyes shut tight.
I say the words in my head, "I wish for it to happen this year...please let it happen this year...let this year be the year a cure happens."
Every year I do this.
I know some people probably think it's silly or ridiculous...a waste of a wish...juvenile...or stupid.
I still do it every year though.
I turned 38 today (technically yesterday now at this point of the night) and it was such an incredible day. I spent time with my little family and really saw them...I wasn't distracted by crochet orders or needing to wash the dishes in the sink...or even by the fact that I am another year older. I saw them. I saw my husband...his smile...his eyes...the way he looks at me. I saw my daughter...the dimples in her cheeks as she laughed...the light in her eyes as she handed me a bracelet and card she made for me. I saw them...really saw them.
Today was a good day...amazing actually...one that I will think about years from now and smile.
Yes, diabetes was there...it's always there...sometimes more in the spotlight than I'd like...but for the most part after all these years, I've learned how to see everything else first. I don't mean I ignore diabetes now...because obviously I don't. I mean that I have learned how to see her dimples....her eyes...the way she walks just like me...the grin that spreads across her face when she reads something funny and she doesn't know I can see her. I see these things first...I see these things in the spotlight.
No matter how many more birthday wishes I choose to use on a cure, I know that as I am saying the wish in my head and blowing out those twinkling flames....I will see her face in my mind...smiling.
Sunday, January 25, 2015
Artificial pancreas?
So, a few days ago my newsfeed on Facebook was blowing up with links to an article about a young Australian boy having been the first in the world to receive an artificial pancreas.
At first, my heart skipped a beat thinking...oh my God...what happened while I slept last night? Was it some sort of miracle? Had things progressed right along in the wee hours while I slept making this device I'd been dreaming about for nearly seven years finally reach completion and get the ok from the powers that be ensuring it's safety?
My second thought was.....no....calm down, Amy.....you know this game...you've played it many times before...stop and read the article first before you let that spark of excitement turn into a full blown raging fire. So, I clicked on it....and after the first few lines realized that it was merely a case of sensationalism. The title of the article proclaimed great things....and the actual content of the article turned out to be an explanation of how this young boy had received a wonderful new insulin pump that has the capabilities to shut off when his blood sugar was low. I was crestfallen, to say the least.....BUT....like I said...I've played this game before...I know how the media is...I know how things that seem too good to be true....likely are.
Don't get me wrong, I am ecstatic for this young boy to finally have such an amazing tool in his life with diabetes. It's a game changer for him, I am certain! It made me smile like only another d-mom can smile to see his little face sitting beside his loving parents. I love that his family can rest a little easier now that this device is in their hands.
My issue...plain and simple...is with the author of the article....more specifically, the person who thought the title was a good idea.
I know the term "artificial pancreas" can be open to interpretation. However, in my eyes...and the eyes of many who read those words....what was described in the article was not in fact an artificial pancreas...but rather an insulin pump. In my eyes, an artificial pancreas would be a device that is worn and has insulin as well as glucagon in it....it requires little to no input from the user to be functional...if the blood sugar drops too low, it will automatically dispense glucagon and if the blood sugar is too high, it will automatically dispense insulin.....essentially...it will function like a real pancreas...but....an artificial one because nothing beats the real deal, right?
I saw many friends share this article with excitement and hope and tears of joy. I saw them realize what it actually was describing in the article and their joy turned to sadness...to feeling that overwhelming sense of being let down again....and it hurt my heart.
So, I'm writing this on the off chance that any writer may come across it. What you do matters. What you do means something to so many. What you provide the world is important. Please take a minute to ask yourself if the words you are choosing are more for gaining readership and following the path of sensationalism.....or if the words you are choosing are more for providing a service...a voice...an accurate and truly honest description of something that means a lot to so many. I hope you will choose to go with the second set of words...not the shiny eye catching ones...but the real and honest ones...because THAT is what we as readers want to hear...that is what matters to us...that is what we consider meaningful.
To the writer of the article about the precious young Australian boy receiving a brilliant new device....I applaud you for sharing his story because he deserves it and we in the diabetes community love to read about members of our family making strides in this life. I just wish you had chosen a different title....an accurate one...one that wouldn't have let us get our hopes up only to be let down once again.
Words are powerful...we must choose them carefully.
At first, my heart skipped a beat thinking...oh my God...what happened while I slept last night? Was it some sort of miracle? Had things progressed right along in the wee hours while I slept making this device I'd been dreaming about for nearly seven years finally reach completion and get the ok from the powers that be ensuring it's safety?
My second thought was.....no....calm down, Amy.....you know this game...you've played it many times before...stop and read the article first before you let that spark of excitement turn into a full blown raging fire. So, I clicked on it....and after the first few lines realized that it was merely a case of sensationalism. The title of the article proclaimed great things....and the actual content of the article turned out to be an explanation of how this young boy had received a wonderful new insulin pump that has the capabilities to shut off when his blood sugar was low. I was crestfallen, to say the least.....BUT....like I said...I've played this game before...I know how the media is...I know how things that seem too good to be true....likely are.
Don't get me wrong, I am ecstatic for this young boy to finally have such an amazing tool in his life with diabetes. It's a game changer for him, I am certain! It made me smile like only another d-mom can smile to see his little face sitting beside his loving parents. I love that his family can rest a little easier now that this device is in their hands.
My issue...plain and simple...is with the author of the article....more specifically, the person who thought the title was a good idea.
I know the term "artificial pancreas" can be open to interpretation. However, in my eyes...and the eyes of many who read those words....what was described in the article was not in fact an artificial pancreas...but rather an insulin pump. In my eyes, an artificial pancreas would be a device that is worn and has insulin as well as glucagon in it....it requires little to no input from the user to be functional...if the blood sugar drops too low, it will automatically dispense glucagon and if the blood sugar is too high, it will automatically dispense insulin.....essentially...it will function like a real pancreas...but....an artificial one because nothing beats the real deal, right?
I saw many friends share this article with excitement and hope and tears of joy. I saw them realize what it actually was describing in the article and their joy turned to sadness...to feeling that overwhelming sense of being let down again....and it hurt my heart.
So, I'm writing this on the off chance that any writer may come across it. What you do matters. What you do means something to so many. What you provide the world is important. Please take a minute to ask yourself if the words you are choosing are more for gaining readership and following the path of sensationalism.....or if the words you are choosing are more for providing a service...a voice...an accurate and truly honest description of something that means a lot to so many. I hope you will choose to go with the second set of words...not the shiny eye catching ones...but the real and honest ones...because THAT is what we as readers want to hear...that is what matters to us...that is what we consider meaningful.
To the writer of the article about the precious young Australian boy receiving a brilliant new device....I applaud you for sharing his story because he deserves it and we in the diabetes community love to read about members of our family making strides in this life. I just wish you had chosen a different title....an accurate one...one that wouldn't have let us get our hopes up only to be let down once again.
Words are powerful...we must choose them carefully.
Sunday, November 23, 2014
Six years, four months,and twenty-nine days
Diabetes sucked today. Plain and simple. It sucked.
Notice how I didn't say that I was the one who sucked? Yea...me too. I guess I'm making progress in that aspect. In six years time, I've learned that when numbers suck and everything seems to be going wrong...that it's not my fault...but rather that it's diabetes fault.
Emma was high all day today...all freakin day..and it took me until almost 10pm to figure out why. I kind of feel like I've just run a marathon to be honest...which is strange to say, because it wasn't me and it wasn't my body having to go through the high blood sugar extravaganza...it was hers. Nonetheless, it's how I feel right now at 10:30 on this particular Sunday night.
I realized though...that while I do know what it's like to fight this bastard of a disease day in and day out for six years, four months, and twenty-eight days.....I don't have a clue as to what it's like to fight it for six years, four months, and twenty-nine days. I don't know what will feel like. I don't know what tomorrow will bring. I don't know what numbers will show up on the screen of her blood sugar meter. I don't know if it will be another battle of highs...or maybe lows...or if it will be an average typical day of decent numbers.
I don't know. Because I'm not there yet.
Back when she was first diagnosed, I used to think ahead all the time. I used to wonder if she would be ok...if she would catch a stomach virus at school...if she'd have to endure struggles because of this disease. I would dwell on it. I would worry about it. I would get caught up in a never ending mental loop of "what ifs?"
I don't let myself live that way anymore.
I focus on today. I focus on the here and now. I live in the moment with her...because the moment is what I have in my grasp. I keep trying.
And when tomorrow comes, I will try again. I will know what it's like to do this for six years, four months, and twenty-nine days tomorrow...and that's how I will handle things then.
Notice how I didn't say that I was the one who sucked? Yea...me too. I guess I'm making progress in that aspect. In six years time, I've learned that when numbers suck and everything seems to be going wrong...that it's not my fault...but rather that it's diabetes fault.
Emma was high all day today...all freakin day..and it took me until almost 10pm to figure out why. I kind of feel like I've just run a marathon to be honest...which is strange to say, because it wasn't me and it wasn't my body having to go through the high blood sugar extravaganza...it was hers. Nonetheless, it's how I feel right now at 10:30 on this particular Sunday night.
I realized though...that while I do know what it's like to fight this bastard of a disease day in and day out for six years, four months, and twenty-eight days.....I don't have a clue as to what it's like to fight it for six years, four months, and twenty-nine days. I don't know what will feel like. I don't know what tomorrow will bring. I don't know what numbers will show up on the screen of her blood sugar meter. I don't know if it will be another battle of highs...or maybe lows...or if it will be an average typical day of decent numbers.
I don't know. Because I'm not there yet.
Back when she was first diagnosed, I used to think ahead all the time. I used to wonder if she would be ok...if she would catch a stomach virus at school...if she'd have to endure struggles because of this disease. I would dwell on it. I would worry about it. I would get caught up in a never ending mental loop of "what ifs?"
I don't let myself live that way anymore.
I focus on today. I focus on the here and now. I live in the moment with her...because the moment is what I have in my grasp. I keep trying.
And when tomorrow comes, I will try again. I will know what it's like to do this for six years, four months, and twenty-nine days tomorrow...and that's how I will handle things then.
Friday, October 24, 2014
Have you ever?
Have you ever closed your eyes for a second after dinner and woken up two hours later wondering what day it was...where you were...what the hell your kids blood sugar was...and why she wasn't getting ready for school...even though you come to find out it's actually 10:30pm on a Friday night?
Have you ever driven around town running errands with the volume on your cell phone cranked to full blast AND the vibrate feature turned on and the phone placed in your lap just so you can turn up the radio when your jam comes on and still be able to hear if your kid is trying to reach you from school because she is low or high?
Have you ever unintentionally placed all the items on your pantry shelf with the nutrition info label facing outward just so it's easier to see what to bolus when your kid wants a snack?
Do you know the carb count for an Oreo cookie by heart? 8
How about a turkey sub from subway? 46 for a 6"
How about a cookie dough blizzard from DQ? 104...yes...one hundred and freakin four!
But yet, you can't remember your husbands cell number...and you have to REALLY think about what year he was born?
Have you ever measured out a cup of water for your kid to drink...only to realize immediately after pouring it, that water has no carbs and that whole task just took a whole lot longer than was necessary?
Have you ever found a used test strip in the litter box?
Or in the refrigerator?
Or in the lint trap of the dryer?
Have you ever had to kneel down to look in the eyes of a real life hero?
Have you ever held their hand and stared at the thousands of tiny black holes in their finger tips and felt your heart ache?
Have you ever wondered how you managed to stab your own flesh and blood in the fingers, the arms, the legs, the belly...thousands upon thousands of times for more years than you care to think about at this point...and managed to not kill them in the process...or lose your sanity along the way?
I have.
I've done all these things and more.
If you have too...
Thanks.
Thanks for making me feel like the impossible is entirely possible.
Have you ever driven around town running errands with the volume on your cell phone cranked to full blast AND the vibrate feature turned on and the phone placed in your lap just so you can turn up the radio when your jam comes on and still be able to hear if your kid is trying to reach you from school because she is low or high?
Have you ever unintentionally placed all the items on your pantry shelf with the nutrition info label facing outward just so it's easier to see what to bolus when your kid wants a snack?
Do you know the carb count for an Oreo cookie by heart? 8
How about a turkey sub from subway? 46 for a 6"
How about a cookie dough blizzard from DQ? 104...yes...one hundred and freakin four!
But yet, you can't remember your husbands cell number...and you have to REALLY think about what year he was born?
Have you ever measured out a cup of water for your kid to drink...only to realize immediately after pouring it, that water has no carbs and that whole task just took a whole lot longer than was necessary?
Have you ever found a used test strip in the litter box?
Or in the refrigerator?
Or in the lint trap of the dryer?
Have you ever had to kneel down to look in the eyes of a real life hero?
Have you ever held their hand and stared at the thousands of tiny black holes in their finger tips and felt your heart ache?
Have you ever wondered how you managed to stab your own flesh and blood in the fingers, the arms, the legs, the belly...thousands upon thousands of times for more years than you care to think about at this point...and managed to not kill them in the process...or lose your sanity along the way?
I have.
I've done all these things and more.
If you have too...
Thanks.
Thanks for making me feel like the impossible is entirely possible.
Wednesday, October 8, 2014
Denial
I read a post online today from a newly diagnosed D-parent. She shared how she is only 2 1/2 months into this life and she felt like she was in denial. She asked if this was normal.
I don't know why, but this post hit me. I read countless posts every day that are diabetes related...and many of them stick with me...many I feel compelled to reply to...offering up support or encouragement. I am usually able to carry on with my day and the post is gone from my thoughts for the most part.
Except for this one.
I can't stop thinking about this parent. I think because that parent was me...six years ago.
I remember taking Emma to a children's museum just a couple of months after her diagnosis. I remember watching her run around with the other kids there...playing...laughing. I remember thinking how this just couldn't be true. I mean look at her! She looked just like those other kids. She didn't look like anything was wrong. She didn't look unwell. I remember thinking that maybe the doctors were wrong...maybe I would wake up tomorrow and she wouldn't have it anymore...maybe the doctors would call me one day and say that they had made a mistake...she didn't have diabetes...she just needed an antibiotic of some sort and she would be right as rain before long. I remember thinking if I just went to bed that night...and closed my eyes extra tight...and slept the night thru...that I would wake up in the morning and this all would have just been a really long...really horrible nightmare.
And then I took her for lunch at the little cafe in the museum.
And diabetes smacked the denial right out of my head again. I pulled out her meter and jabbed a needle into her tiny little finger...saw her wince from the pain...just for a second though...a quick second...because at that point needles in her fingertips were already no big deal to her...she didn't cry anymore...she didn't voice to me that it hurt...it was already just her accepted reality. I scoured the menu for something that I knew the carb count on...I ordered that even though it wasn't what she wanted...because at that point I still wasn't comfortable guessing the carbs in her food...and I didn't know that many by heart yet. She got her food...ate it...and I jabbed another needle in her arm.
I lived in denial for a while. It was something I held onto for dear life. I had to. It's what got me through those first few weeks.
Looking back on it now, I think I confused denial with hope. I hoped it wasn't true. I prayed it wasn't our reality.
Here we are all these years later and I still sometimes will randomly feel that waking nightmare scenario seeping in to my thoughts. The way we as parents cope with this life is really a beautiful thing if you think about it. We grieve the loss of what will never be. We strive for unattainable perfection. We hope.
So, to you, the newly diagnosed parent sharing your innermost thoughts today....I say thank you. Thank you for being brave and speaking from your heart. Thank you for allowing yourself to feel whatever it is you're feeling whenever you're feeling it. Hold on to each day...hold onto it with everything you've got...and know that you can do it....know that you ARE doing it...and it will be ok...I promise you that.
I don't know why, but this post hit me. I read countless posts every day that are diabetes related...and many of them stick with me...many I feel compelled to reply to...offering up support or encouragement. I am usually able to carry on with my day and the post is gone from my thoughts for the most part.
Except for this one.
I can't stop thinking about this parent. I think because that parent was me...six years ago.
I remember taking Emma to a children's museum just a couple of months after her diagnosis. I remember watching her run around with the other kids there...playing...laughing. I remember thinking how this just couldn't be true. I mean look at her! She looked just like those other kids. She didn't look like anything was wrong. She didn't look unwell. I remember thinking that maybe the doctors were wrong...maybe I would wake up tomorrow and she wouldn't have it anymore...maybe the doctors would call me one day and say that they had made a mistake...she didn't have diabetes...she just needed an antibiotic of some sort and she would be right as rain before long. I remember thinking if I just went to bed that night...and closed my eyes extra tight...and slept the night thru...that I would wake up in the morning and this all would have just been a really long...really horrible nightmare.
And then I took her for lunch at the little cafe in the museum.
And diabetes smacked the denial right out of my head again. I pulled out her meter and jabbed a needle into her tiny little finger...saw her wince from the pain...just for a second though...a quick second...because at that point needles in her fingertips were already no big deal to her...she didn't cry anymore...she didn't voice to me that it hurt...it was already just her accepted reality. I scoured the menu for something that I knew the carb count on...I ordered that even though it wasn't what she wanted...because at that point I still wasn't comfortable guessing the carbs in her food...and I didn't know that many by heart yet. She got her food...ate it...and I jabbed another needle in her arm.
I lived in denial for a while. It was something I held onto for dear life. I had to. It's what got me through those first few weeks.
Looking back on it now, I think I confused denial with hope. I hoped it wasn't true. I prayed it wasn't our reality.
Here we are all these years later and I still sometimes will randomly feel that waking nightmare scenario seeping in to my thoughts. The way we as parents cope with this life is really a beautiful thing if you think about it. We grieve the loss of what will never be. We strive for unattainable perfection. We hope.
So, to you, the newly diagnosed parent sharing your innermost thoughts today....I say thank you. Thank you for being brave and speaking from your heart. Thank you for allowing yourself to feel whatever it is you're feeling whenever you're feeling it. Hold on to each day...hold onto it with everything you've got...and know that you can do it....know that you ARE doing it...and it will be ok...I promise you that.
Monday, September 22, 2014
I believe
I believe
I believe in love at first sight
I believe in dreams come true
I believe in wishing upon all the stars in the sky
I believe in that inner voice whispering to give it a try
I believe in perseverance
I believe in fate
I believe it can be done
I believe it will be done
I believe in choosing happy
I believe in hope.
I also believe in facts
I believe in experience
I believe in making mistakes
I believe in making mistakes
I believe in making mistakes
I believe in learning from my mistakes
I believe in trying my best
I believe in you
and
I believe in me.
I believe in love at first sight
I believe in dreams come true
I believe in wishing upon all the stars in the sky
I believe in that inner voice whispering to give it a try
I believe in perseverance
I believe in fate
I believe it can be done
I believe it will be done
I believe in choosing happy
I believe in hope.
I also believe in facts
I believe in experience
I believe in making mistakes
I believe in making mistakes
I believe in making mistakes
I believe in learning from my mistakes
I believe in trying my best
I believe in you
and
I believe in me.
Wednesday, September 17, 2014
Staring at my kitchen
I think too much.
I do...really...it's ridiculous at times, if I'm being completely honest.
Sometimes I find myself sitting there in the middle of the day, while Emma is at school, and I'm thinking about the numbers. It's not so much that I'm worried about what her number is at that moment (that was me about 2 years ago though lol), but more so I will think about what her numbers were the night before...or that morning...what her ratios is currently for her breakfast bolus...what her basal rate is for 2:00am. I will catch myself blindly staring into the kitchen...because that's where her meter sits..on the counter...that's where I keep my tools of the trade...my command central, really. I stare off into the kitchen and the numbers swirl around my brain. Throw a little sleep deprivation for the last six years in there..add a little....ok a LOT...of caffeine in there from that mornings pot of coffee...and you sometimes wind up with a whole murky mess of confusion sloshing about up there.
I guess it's because I have been conditioned over the years to try and decipher the patterns...echoes of the diabetes nurses voice in my head encouraging me to "loooook for the patterns. Seeeek out the pattern. The key is in the patternnnn!" I wish the numbers would connect and form a brilliantly obvious and beautiful pattern for me every time. In reality, it's not that easy...and sometimes...more often than I care to think about....the pattern remains elusive to me.
After all these years, I'm definitely not as panicky as I used to be about it. I'm not a slacker either though. I guess I'm stuck somewhere in the middle. It is what it is and if I find the pattern in her blood sugar numbers and am able to make the adjustments needed, then great...fanfreakintastic. BUT, if I don't find it...if I can't find it....I hunker down and wait....I sit on my couch and gaze into the kitchen...waiting...letting it swirl around in my head....holding onto my patience....OR, I ask for help.
See, the thing about diabetes that has been uber hard to accept still, is that sometimes there is nothing to be deciphered...sometimes there is no rhyme or reason as to why shitty numbers occur...sometimes it just is what it is...and you have to remind yourself over and over again that it's ok.
Patterns can be a beautiful thing. But, so is the ability to have a quiet mind...free of numbers.
I do...really...it's ridiculous at times, if I'm being completely honest.
Sometimes I find myself sitting there in the middle of the day, while Emma is at school, and I'm thinking about the numbers. It's not so much that I'm worried about what her number is at that moment (that was me about 2 years ago though lol), but more so I will think about what her numbers were the night before...or that morning...what her ratios is currently for her breakfast bolus...what her basal rate is for 2:00am. I will catch myself blindly staring into the kitchen...because that's where her meter sits..on the counter...that's where I keep my tools of the trade...my command central, really. I stare off into the kitchen and the numbers swirl around my brain. Throw a little sleep deprivation for the last six years in there..add a little....ok a LOT...of caffeine in there from that mornings pot of coffee...and you sometimes wind up with a whole murky mess of confusion sloshing about up there.
I guess it's because I have been conditioned over the years to try and decipher the patterns...echoes of the diabetes nurses voice in my head encouraging me to "loooook for the patterns. Seeeek out the pattern. The key is in the patternnnn!" I wish the numbers would connect and form a brilliantly obvious and beautiful pattern for me every time. In reality, it's not that easy...and sometimes...more often than I care to think about....the pattern remains elusive to me.
After all these years, I'm definitely not as panicky as I used to be about it. I'm not a slacker either though. I guess I'm stuck somewhere in the middle. It is what it is and if I find the pattern in her blood sugar numbers and am able to make the adjustments needed, then great...fanfreakintastic. BUT, if I don't find it...if I can't find it....I hunker down and wait....I sit on my couch and gaze into the kitchen...waiting...letting it swirl around in my head....holding onto my patience....OR, I ask for help.
See, the thing about diabetes that has been uber hard to accept still, is that sometimes there is nothing to be deciphered...sometimes there is no rhyme or reason as to why shitty numbers occur...sometimes it just is what it is...and you have to remind yourself over and over again that it's ok.
Patterns can be a beautiful thing. But, so is the ability to have a quiet mind...free of numbers.
Tuesday, August 12, 2014
The Orange Moon
Lighting up the night with orange bursts of dreamy moons and stars yet to be wished upon
I reach for you beneath the trees
The leaves above us a blanket of strength and hope
Softly enveloping us in a cocoon of peaceful beauty
Your breath even and whispered against my neck
There is no time
No ticking of the clock
No number shouting from the rooftops
No pressure
No fear
No anxiety polluting the air between us
A thick fog of misty madness
The passage of time does not exist in this moment
Beneath the trees
Beneath the orange moon
Beneath the wishing stars
Star light star bright
Where are you hiding tonight?
Time stands still
As I hold you tight and
Dream of your smile
Your smile that holds the power of a thousand untold stories
Just waiting to be heard
As the last flickers of the moon burn out
And turn once again to the light
I reach for you beneath the trees
The leaves above us a blanket of strength and hope
Softly enveloping us in a cocoon of peaceful beauty
Your breath even and whispered against my neck
There is no time
No ticking of the clock
No number shouting from the rooftops
No pressure
No fear
No anxiety polluting the air between us
A thick fog of misty madness
The passage of time does not exist in this moment
Beneath the trees
Beneath the orange moon
Beneath the wishing stars
Star light star bright
Where are you hiding tonight?
Time stands still
As I hold you tight and
Dream of your smile
Your smile that holds the power of a thousand untold stories
Just waiting to be heard
As the last flickers of the moon burn out
And turn once again to the light
Tuesday, July 22, 2014
Defeat isn't real
Victories happen all over the world...every second of every day. People reach insurmountable goals and achieve greatness all the time. It's a fact.
In my opinion, defeat is non-existent. Defeat is something we tell ourselves when we feel like we are too tired...or too weak...or too small...or too...whatever. We tell ourselves these things and we whole-heartedly believe them in that moment. Other people might even tell us these things. They might scoff at our lofty dreams and snicker behind our backs at what they consider to be something silly. However, defeat is not real. Defeat is not an option. Defeat is non-existent. It's simply a moment in time where we must choose to continue on or wait a while longer and wallow in our setbacks.
In this life with diabetes, I feel defeated all the time. A strain of ugly blood sugar numbers...a failed pump site...a combo bolus gone awry. I feel like a failure when I see the effects of my mistakes all over my child's face...the dark circles under her eyes...the shaky hands of a low blood sugar...the tiny holes in her fingertips from countless blood sugar checks as I battle yet another high blood sugar. I see my own defeated feelings mirrored back at me in her eyes. I see it...and I feel it...but I am NOT it. I'm not defeated anymore.
I kicked ass at being her pancreas today. I have been battling high blood sugars for what seems like forever...due to seasons changing...the hormones of a ten year old body...the randomness of summer day schedules. I have felt like a failure a lot lately.
But not today.
Today I won. Today we won.
Today was a victory of epic proportions in my eyes.
So I am writing this to acknowledge those of you out there who might have been feeling the weight of defeat...and those of you who won today as well. I raise my glass to you and smile in silent victory...together. It's a quiet victory on the outside as we sit here after midnight...but it's a sweet victory. A hard fought win. I'm proud of you for sticking it out. We may stand in solidarity in the wee hours of the morning...meters and lancets in hand...squeezing blood from our babies fingertips...but we stand as one together in spirit always and forever...and for that I'm greatful.
In my opinion, defeat is non-existent. Defeat is something we tell ourselves when we feel like we are too tired...or too weak...or too small...or too...whatever. We tell ourselves these things and we whole-heartedly believe them in that moment. Other people might even tell us these things. They might scoff at our lofty dreams and snicker behind our backs at what they consider to be something silly. However, defeat is not real. Defeat is not an option. Defeat is non-existent. It's simply a moment in time where we must choose to continue on or wait a while longer and wallow in our setbacks.
In this life with diabetes, I feel defeated all the time. A strain of ugly blood sugar numbers...a failed pump site...a combo bolus gone awry. I feel like a failure when I see the effects of my mistakes all over my child's face...the dark circles under her eyes...the shaky hands of a low blood sugar...the tiny holes in her fingertips from countless blood sugar checks as I battle yet another high blood sugar. I see my own defeated feelings mirrored back at me in her eyes. I see it...and I feel it...but I am NOT it. I'm not defeated anymore.
I kicked ass at being her pancreas today. I have been battling high blood sugars for what seems like forever...due to seasons changing...the hormones of a ten year old body...the randomness of summer day schedules. I have felt like a failure a lot lately.
But not today.
Today I won. Today we won.
Today was a victory of epic proportions in my eyes.
So I am writing this to acknowledge those of you out there who might have been feeling the weight of defeat...and those of you who won today as well. I raise my glass to you and smile in silent victory...together. It's a quiet victory on the outside as we sit here after midnight...but it's a sweet victory. A hard fought win. I'm proud of you for sticking it out. We may stand in solidarity in the wee hours of the morning...meters and lancets in hand...squeezing blood from our babies fingertips...but we stand as one together in spirit always and forever...and for that I'm greatful.
Thursday, July 17, 2014
Our shoes
So, I haven't blogged in a while. As we were driving to the beach today, I started thinking about it actually. I wonder if I've said all I need to say about diabetes for now? I wonder if my heart and my mind has somehow found some sort of peace with it finally? I wonder if I've just gotten to the point on this journey where more of my mind is focused on living and making memories with my kid...that I just don't really focus on the diabetes aspect of things as much anymore?
I mean I still think about the numbers...I'm sure I always will. I still get that panicked tightening in my chest when she has a dangerously low blood sugar...like she happened to have this evening in the deodorant aisle at the grocery store...and I had to open a bottle of soda and hand it to her...haul her into the cart because she could barely walk...and quickly finish our job of checking out and getting home. I still feel it. I still don't like it. I still worry.
But it's just not always at the forefront of my mind anymore.
LIFE is.
LIVING is.
I look back at how far we've come and how long we've been on this journey and I'm amazed that we've made it. I'm amazed that we've survived the insanity. I'm proud of us.
I look forward and...yes...I worry...I wonder what sort of obstacles we will encounter up ahead and how many times my heart will skip a beat at an ugly number...how many more site changes she has yet to endure...how much longer we will have to wait for that elusive cure. I look ahead and I wonder.
Yet, for now....right here...in this moment...I'm ok. We're ok. We are living and laughing and learning. I stand here at this spot on our path and look below at my feet and I see acceptance. I see strength. I see two feet firmly planted below me...and her two feet beside me. Our shoes are worn and slightly tattered....but they are still bright...still sturdy...and they still have plenty of miles left in them.
I mean I still think about the numbers...I'm sure I always will. I still get that panicked tightening in my chest when she has a dangerously low blood sugar...like she happened to have this evening in the deodorant aisle at the grocery store...and I had to open a bottle of soda and hand it to her...haul her into the cart because she could barely walk...and quickly finish our job of checking out and getting home. I still feel it. I still don't like it. I still worry.
But it's just not always at the forefront of my mind anymore.
LIFE is.
LIVING is.
I look back at how far we've come and how long we've been on this journey and I'm amazed that we've made it. I'm amazed that we've survived the insanity. I'm proud of us.
I look forward and...yes...I worry...I wonder what sort of obstacles we will encounter up ahead and how many times my heart will skip a beat at an ugly number...how many more site changes she has yet to endure...how much longer we will have to wait for that elusive cure. I look ahead and I wonder.
Yet, for now....right here...in this moment...I'm ok. We're ok. We are living and laughing and learning. I stand here at this spot on our path and look below at my feet and I see acceptance. I see strength. I see two feet firmly planted below me...and her two feet beside me. Our shoes are worn and slightly tattered....but they are still bright...still sturdy...and they still have plenty of miles left in them.
Tuesday, June 17, 2014
Step away from the edge
The 26th of this month will mark six years since Emma's diagnosis with type 1 diabetes. On one hand, it feels like a lifetime ago...I was a different person...she was a different child...it was a different life all together. I was naive to so many things in life. On the other hand, it feels like it was just yesterday that I stepped through the hospital doors with her tiny hand in mine...my heart pounding in fear...real honest fear...the kind that grips your heart in it's frozen hands and laughs right in your face as you struggle to put one foot in front of the other.
We did it though. We made it. We are still here.
If you had asked me six years ago if I could foresee a day where diabetes wouldn't always be at the forefront of my mind, I would've said no way!
If you had asked me if I would've thought that my kid would ever stop struggling and fighting and crying tears of complete fear before ever needle...every finger poke...every injection, I would've looked at you with hot tears burning my eyes and whispered no.
If you had asked me if I would ever feel capable and confident and like I could handle whatever diabetes threw my way, I would've laughed right in your face and sputtered out a maniacal NEVER!
And yet I say again....we made it...we are still here.
In a little over a week, Emma and I will be commemorating the day with a couple friends. I'm taking them ziplining out in the forest....80 feet in the air. I'm scared...she's scared...her friends are scared....but we are excited! Emma chose this activity because it's something she's always wanted to do....and who am I to stand in her way?
I know that I will stand behind her before she steps off that ledge to fly across to the other side...I will stand there and be in awe of her bravery. I will be in awe of her love of life...of living. I will be in awe of her ability to not let anything stop her...not even fear.
The way I look at it, fear is powerful. Fear is an emotion that can cripple you or propel you onward towards your dreams. Your ability to choose which path that fear will push you...is something personal to you.
When I walked through those hospital doors six years ago, I chose to let the fear propel me forward...I chose for her...because of her....because I wanted her to see from day one that fear is never an excuse or a reason not to do something.
Twelve days from now, when I stand behind my daughter and cheer her on as she steps off that ledge, I will be greatful for the memories we are making....I will be greatful and humbled and proud.
We did it though. We made it. We are still here.
If you had asked me six years ago if I could foresee a day where diabetes wouldn't always be at the forefront of my mind, I would've said no way!
If you had asked me if I would've thought that my kid would ever stop struggling and fighting and crying tears of complete fear before ever needle...every finger poke...every injection, I would've looked at you with hot tears burning my eyes and whispered no.
If you had asked me if I would ever feel capable and confident and like I could handle whatever diabetes threw my way, I would've laughed right in your face and sputtered out a maniacal NEVER!
And yet I say again....we made it...we are still here.
In a little over a week, Emma and I will be commemorating the day with a couple friends. I'm taking them ziplining out in the forest....80 feet in the air. I'm scared...she's scared...her friends are scared....but we are excited! Emma chose this activity because it's something she's always wanted to do....and who am I to stand in her way?
I know that I will stand behind her before she steps off that ledge to fly across to the other side...I will stand there and be in awe of her bravery. I will be in awe of her love of life...of living. I will be in awe of her ability to not let anything stop her...not even fear.
The way I look at it, fear is powerful. Fear is an emotion that can cripple you or propel you onward towards your dreams. Your ability to choose which path that fear will push you...is something personal to you.
When I walked through those hospital doors six years ago, I chose to let the fear propel me forward...I chose for her...because of her....because I wanted her to see from day one that fear is never an excuse or a reason not to do something.
Twelve days from now, when I stand behind my daughter and cheer her on as she steps off that ledge, I will be greatful for the memories we are making....I will be greatful and humbled and proud.
Sunday, June 1, 2014
Thank you
To all of you out there that share your life experiences about type 1 diabetes with the world...thank you.
To all of you that raise what you can for JDRF or whatever diabetes related organization you choose...thank you.
To all of you that put on fundraiser after fundraiser year after year...spending your own money to set it up and using your own time to make it happen..thank you.
To all of you that make phone calls, send emails, go door to door, ask your friends and family or even complete strangers for a donation...thank you.
To all of you that walk, run, ride, or speak at any gathering for these charities...thank you.
To all of you that run camps every summer for our kids...thank you.
To all of you that post on social media, write books, blog, call a newly diagnosed family, or visit them in the hospital..thank you.
To all of you that take care of that special type 1 in your life...day after day...sleepless night after night...thank you.
To all of you that support, volunteer your time, or even simply drive around with a JDRF sneaker decal stuck to your car window...thank you.
To all of you that do what you can...when you can...no matter how big or how small...thank you.
It's not easy.
It's not always fun.
But it's always worth it...and it's always appreciated...and I will always be greatful...so...
Thank you.
To all of you that raise what you can for JDRF or whatever diabetes related organization you choose...thank you.
To all of you that put on fundraiser after fundraiser year after year...spending your own money to set it up and using your own time to make it happen..thank you.
To all of you that make phone calls, send emails, go door to door, ask your friends and family or even complete strangers for a donation...thank you.
To all of you that walk, run, ride, or speak at any gathering for these charities...thank you.
To all of you that run camps every summer for our kids...thank you.
To all of you that post on social media, write books, blog, call a newly diagnosed family, or visit them in the hospital..thank you.
To all of you that take care of that special type 1 in your life...day after day...sleepless night after night...thank you.
To all of you that support, volunteer your time, or even simply drive around with a JDRF sneaker decal stuck to your car window...thank you.
To all of you that do what you can...when you can...no matter how big or how small...thank you.
It's not easy.
It's not always fun.
But it's always worth it...and it's always appreciated...and I will always be greatful...so...
Thank you.
Friday, May 23, 2014
Rhymes from my heart
Sometimes I like to pretend that I am you
And you are me
We see the world through eyes that are one
Forever dreaming of an honest land
Full of honest hands
That reach toward the skies
Yet to be imagined
Yet to be touched
Sometimes it's just too much
And the words escape me
The light betrays me
The night enfolds me
In it's arms
Cold and blinding
Never finding
That star of reason
Shining bright like a beacon of hope
Upon the vast sea
Whatever will be...will be
Don't you see?
You and me
We are free
And always will be
And you are me
We see the world through eyes that are one
Forever dreaming of an honest land
Full of honest hands
That reach toward the skies
Yet to be imagined
Yet to be touched
Sometimes it's just too much
And the words escape me
The light betrays me
The night enfolds me
In it's arms
Cold and blinding
Never finding
That star of reason
Shining bright like a beacon of hope
Upon the vast sea
Whatever will be...will be
Don't you see?
You and me
We are free
And always will be
Monday, May 19, 2014
What diabetes is REALLY about
To me, diabetes isn't about the needles or the blood. It's not about the highs and the lows. It's not about the worry or the fear.
To me, diabetes is about the little things that most people wouldn't even think twice about...things that they take for granted every single day. Things I myself used to take for granted every day. Things like taking a bite of food without thinking twice about how many carbs are in it...or what my blood sugar is...or if I plan on running around at the park after I eat it. Things like sending my kid off to school without a second thought as to whether or not she will be ok and survive the day. Things like sleep....going to sleep...and just sleeping without a single thought of her numbers running through my mind. Things like sending her outside to play on a warm summer day and seeing her friend hand out freezies or Popsicles to the kids they are playing with....all of the kids except for mine...because she didn't know if she could have one too...because she didn't know the carbs in it or if she should bolus because she was playing and active. Just knowing that she was the only one not to partake in a typical and simple summer day kid occurrence....because she has to think twice...she wasn't sure...so she didn't have one....ahh...that kills me. To think that a stupid freezie has the ability to piss me off and make me sad for my kid...well, it's just absurd....but it's real...it's true...it's valid....and it's the way life is for us.
Diabetes is about those little things.....those moments that we all take for granted....all of us EXCEPT for the ones who live with diabetes in there house.
I know I have a choice in how I react to moments like these. I know I can choose to focus on the positives...the fact that she made a smart choice in that moment and decided not to eat a freezie because she wasn't sure. She could have just ate one. She could have had it and not said a word to me about it. But she didn't. She chose not to eat one because she was unsure....and that's ok...that's smart...that's what I need to focus on...the fact that she chose wisely and kept herself safe. I should focus on the fact that she had fun playing in the sun with kids...laughing...being a kid...and she didn't have a low blood sugar...she didn't let diabetes stop her.
I should focus on that.
But right here...right now...in this very moment....I'm focusing on the stupid freezie that she didn't eat...and it's upsetting and annoying and heartbreaking and maddening all rolled into one.
I'll get over it. I told her what to do next time if it happens again.....eat the freezie if you want one.
But for now....I am allowing myself a moment to hate the freezie she didn't eat.
I'm allowing myself a moment to hate diabetes and all the little things it affects.
Just for a moment.
And that's ok.
To me, diabetes is about the little things that most people wouldn't even think twice about...things that they take for granted every single day. Things I myself used to take for granted every day. Things like taking a bite of food without thinking twice about how many carbs are in it...or what my blood sugar is...or if I plan on running around at the park after I eat it. Things like sending my kid off to school without a second thought as to whether or not she will be ok and survive the day. Things like sleep....going to sleep...and just sleeping without a single thought of her numbers running through my mind. Things like sending her outside to play on a warm summer day and seeing her friend hand out freezies or Popsicles to the kids they are playing with....all of the kids except for mine...because she didn't know if she could have one too...because she didn't know the carbs in it or if she should bolus because she was playing and active. Just knowing that she was the only one not to partake in a typical and simple summer day kid occurrence....because she has to think twice...she wasn't sure...so she didn't have one....ahh...that kills me. To think that a stupid freezie has the ability to piss me off and make me sad for my kid...well, it's just absurd....but it's real...it's true...it's valid....and it's the way life is for us.
Diabetes is about those little things.....those moments that we all take for granted....all of us EXCEPT for the ones who live with diabetes in there house.
I know I have a choice in how I react to moments like these. I know I can choose to focus on the positives...the fact that she made a smart choice in that moment and decided not to eat a freezie because she wasn't sure. She could have just ate one. She could have had it and not said a word to me about it. But she didn't. She chose not to eat one because she was unsure....and that's ok...that's smart...that's what I need to focus on...the fact that she chose wisely and kept herself safe. I should focus on the fact that she had fun playing in the sun with kids...laughing...being a kid...and she didn't have a low blood sugar...she didn't let diabetes stop her.
I should focus on that.
But right here...right now...in this very moment....I'm focusing on the stupid freezie that she didn't eat...and it's upsetting and annoying and heartbreaking and maddening all rolled into one.
I'll get over it. I told her what to do next time if it happens again.....eat the freezie if you want one.
But for now....I am allowing myself a moment to hate the freezie she didn't eat.
I'm allowing myself a moment to hate diabetes and all the little things it affects.
Just for a moment.
And that's ok.
Friday, May 16, 2014
Gross
It's been almost six years since we met diabetes.
My daughter has rolled with the punches since she was just four years old.
She's accepted it better than I think I ever could have at her age.
She rarely mentions the negatives that go along with it...the needles...the blood...the highs or lows.
Simply put....it is what it is for her.
I have always encouraged her to share her feelings and her thoughts....to let it out if she needs to...that it's ok to be angry or sad or pissed off. That it's ok to be jealous or afraid or worried. That it's ok to feel however she is feeling. I want her to know that she can vocalize her emotions and there will be never be any judgement...there will only be love and support.
So, because of this....I sometimes have wondered over the years what exactly goes on in her head...what she thinks...what she experiences when she's not with me. I worry about her encountering ignorance. I worry about her getting her feelings hurt. I mean she deals with enough as it is on a daily basis....I want to protect her feelings so much.
When she does share situations that occurred...comments people have made...it sometimes feels like her words describing the situation actually knock the wind right out of me.
Today she had a low blood sugar while we were out buying supplies to make new team shirts for this years JDRF Walk. I handed her a package of scooby doo fruit snacks and she shoved them all in her mouth at once. I've seen it a million times before....her cheeks puffed out full of chewy snacks...it's nothing unusual to my jaded eyes. Well, once she swallowed them all, she turned to me and very nonchalantly said, "ya know....one time some kids at school saw me do that....eat all the fruit snack pieces at once....and were talking to each other about how gross it was that I just shoved them all in my mouth at once." I felt the air whoosh out of my lungs and anger burn my fingertips...anger at the ignorance she had to hear...anger that people can be so inconsiderate...anger that this is not the first time my daughter would hear a comment like that and it most certainly would not be the last time either. I asked her what she said to the girls who were saying this behind her as she was fixing her own blood sugar. She told me, "nothing. They were standing behind me talking to each other about me. I wasn't a part of the conversation, so I didn't say anything. And anyways, I don't care...when I have to eat something to feel better and fix my low....I'm gonna do it...who cares what they think?"
Ignorance is a fact. Inconsiderate people are a reality. Diabetes is her reality. It is what it is.
I put my arm around my extra sweet girls shoulder and we walked into the store talking about tshirt design ideas....because you see....I have nothing to worry about....she will hear ignorance...she will make a choice to let her feelings get hurt or not.
It's my job to continue to teach her about the choice....
It's my job to continue to teach her that no matter what she may encounter in this life....diabetes related or not.....she will always always always have a choice in what she takes away from it.
Oh....and to those kids who thought the manner in which my daughter chose to keep herself alive was gross.....I advise you to recognize that YOU have a choice as well....and I hope next time you encounter something you find unusual...or weird...or gross.....well, I hope that you will make a better choice next time in how you react.
My daughter has rolled with the punches since she was just four years old.
She's accepted it better than I think I ever could have at her age.
She rarely mentions the negatives that go along with it...the needles...the blood...the highs or lows.
Simply put....it is what it is for her.
I have always encouraged her to share her feelings and her thoughts....to let it out if she needs to...that it's ok to be angry or sad or pissed off. That it's ok to be jealous or afraid or worried. That it's ok to feel however she is feeling. I want her to know that she can vocalize her emotions and there will be never be any judgement...there will only be love and support.
So, because of this....I sometimes have wondered over the years what exactly goes on in her head...what she thinks...what she experiences when she's not with me. I worry about her encountering ignorance. I worry about her getting her feelings hurt. I mean she deals with enough as it is on a daily basis....I want to protect her feelings so much.
When she does share situations that occurred...comments people have made...it sometimes feels like her words describing the situation actually knock the wind right out of me.
Today she had a low blood sugar while we were out buying supplies to make new team shirts for this years JDRF Walk. I handed her a package of scooby doo fruit snacks and she shoved them all in her mouth at once. I've seen it a million times before....her cheeks puffed out full of chewy snacks...it's nothing unusual to my jaded eyes. Well, once she swallowed them all, she turned to me and very nonchalantly said, "ya know....one time some kids at school saw me do that....eat all the fruit snack pieces at once....and were talking to each other about how gross it was that I just shoved them all in my mouth at once." I felt the air whoosh out of my lungs and anger burn my fingertips...anger at the ignorance she had to hear...anger that people can be so inconsiderate...anger that this is not the first time my daughter would hear a comment like that and it most certainly would not be the last time either. I asked her what she said to the girls who were saying this behind her as she was fixing her own blood sugar. She told me, "nothing. They were standing behind me talking to each other about me. I wasn't a part of the conversation, so I didn't say anything. And anyways, I don't care...when I have to eat something to feel better and fix my low....I'm gonna do it...who cares what they think?"
Ignorance is a fact. Inconsiderate people are a reality. Diabetes is her reality. It is what it is.
I put my arm around my extra sweet girls shoulder and we walked into the store talking about tshirt design ideas....because you see....I have nothing to worry about....she will hear ignorance...she will make a choice to let her feelings get hurt or not.
It's my job to continue to teach her about the choice....
It's my job to continue to teach her that no matter what she may encounter in this life....diabetes related or not.....she will always always always have a choice in what she takes away from it.
Oh....and to those kids who thought the manner in which my daughter chose to keep herself alive was gross.....I advise you to recognize that YOU have a choice as well....and I hope next time you encounter something you find unusual...or weird...or gross.....well, I hope that you will make a better choice next time in how you react.
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