Last week, I was privileged to participate in JDRF Government Day. This is an event sponsored by JDRF in which advocates from across the country meet in Washington D.C. Over the course of four days we learned about research progress, networked with other T1 D advocates, and met with our respective state's elected officials.
On the first night, we stood and introduced ourselves and spoke of our connection to T1D. I fought back tears more than once as roughly 200 people told their stories. We heard of success stories and we heard of losses. Despite the resilience shown by all present, the message is clear, this story of T1D needs a happy ending and the sooner, the better.
We heard that The Special Diabetes Program (SDP) is making progress. So much so that Dr. Aaron Kowalski- JDRF's Chief Mission Officer and VP of Research stated, "We have this disease on the run." As a person living with diabetes himself, he has a reason to give chase. Since the inception of the SDP in 1997, we have seen the improved technology including better CGM's and the Artificial Pancreas. However, what about the person who doesn't want to be attached to a device 24/7? To that end, we saw an Encapsulation device as small as a band-aid that could potentially be implanted under the skin and allow a person to live insulin free for up to two years. We heard of research projects such as The Environmental Determinants of Diabetes in the Young (TEDDY) that has made incredible strides in determining the causes and progression of T1. SDP researchers have identified over 40 genes associated with T1D bringing the total to 50 known gene regions- up from only 3 just a few years ago.
While Type 1 and Type 2 are two different animals, SDP research has benefited both in terms of preventing complications. Continuous Glucose Monitors (CGM) and the artificial pancreas systems can improve glucose control in both populations, thus lowering long term complications such as eye and kidney disease. SDP is accelerating a treatment which can reverse vision loss in patients with diabetic macular edema.
The SDP not only benefits people with T1D but also those with other autoimmune diseases Collectively, autoimmune diseases affect approximately 5-8% of the population. Some of the genes associated with T1 are also associated with other autoimmune diseases. Research and therapies effective for T1 could have a positive effect on other autoimmune diseases. This little bit of information about autoimmune diseases is particularly personal to me as my immediate family seems to collect them like other people collect stamps!
We spoke with our members of the House and the Senate to bring our stories home, to demonstrate the progress and the need for SDP to continue and to ask them to please vote to extend the SDP, which is set to expire in September 2015. It is currently attached to the "doc fix" and will potentially be renewed for 2 years. Our voices were heard as the House overwhelming voted in favor of HR 2. The Senate will continue to discuss their corresponding bill after the Easter break and hopefully bring the bipartisan bill to a quick Yay vote.
While all of this progress is hopeful, the ending to this story cannot come quickly enough. Yesterday, my husband sent me a text telling me that his blood sugar was 395! I responded with an inappropriate statement, thinking to myself he was one day early for an April Fool's joke and a terrible one at that! But, no-- it was no joke. Troy had a kidney transplant nearly 10 years ago as the result of a different autoimmune disorder (IgA Nephropathy). Things have been going great-- until this complication. We had been told that prolonged use of Prednisone and Prograf could lead to diabetes. For the last few weeks he has been really tired, had blurred vision, and just generally not feeling well. His regular blood work came back with good news for the kidney but bad news for the pancreas. After seeing his elevated fasting blood sugar, an A1c was ordered. The result was a whopping 10.2-- officially the highest in the house- and not the news we wanted to hear! However, knowing what we know about hypoglycemia, we should have seen this coming. Today he became the 4th insulin user in our house and our diabetes arsenal has taken over another shelf. Text messages about missing socks have become text messages about blood sugars and sliding scales. After day one we both, especially Troy, have a renewed respect for what our kids have been handling for years. If all goes well, his diabetes adventure will be short lived; for our kids, it's a ferris wheel ride they may never get off.
Despite the progress being made and the hope on the horizon, regardless of its type, diabetes is an ugly disease. It's mean, it's painful, it's aggressive, it's unpredictable, it's deadly and it's time to kill the beast.
Follow the link to learn more about the SDP and what you can do to help http://advocacy.jdrf.org/our-work/special-diabetes-program/ JDRF is currently sponsoring more than $568 million in scientific research in 17 countries including 50 clinical trials. This link will tell you other ways you can be involved http://jdrf.org/get-involved/. For my running friends, JDRF is a charity for this year's Fargo Marathon. If you plan to run in any of the races, consider joining their team.
Wednesday, April 1, 2015
Thursday, February 19, 2015
Still Learning
It has been a while since I have posted. That doesn't mean I haven't been writing, just that I haven't been able to write a post worthy of publishing! Sometimes, a girl just likes to vent! However, in recent weeks, I have been following the story of a little girl named Kycie. This story has touched my heart in so many ways.
I once had a little sparkly blue-eyed girl with a puff of pale blonde hair much like Kycie. That baby girl is now 19 and reached her 16 year "diaversary" just 5 days before Kycie's diagnosis. She still has sparkly blue eyes and a giggle so infectious you can't help but laugh with her. I thank God everyday that we had a doctor who thought to look beyond the typical ailments of a 4 year old and do an extra little blood test, "just to be sure." When the tests came back, he gave us the news with quiet reassurance. He had already set up our appointments for our next step (thank goodness as I was numb) and we actually had nearly a full day to let the news sink in before we had to admit her to the hospital. In essence, we got to prepare her for her journey- a luxury most T1D kids and families do not get. Since then, I have had numerous people--friends and acquaintances--ask how we knew. I have to confess, I didn't. I was convinced Tylie had a bladder infection. I didn't see Taya's symptoms, Troy checked her because he had a weird feeling. I definitely wouldn't have seen TJ's symptoms if his moodiness hadn't reminded me of a high blood sugar tantrum. There are days I still beat myself up over that- should we have seen the signs sooner? Diabetes is sneaky. I always respond to these people, if you wonder, have your doctor run the blood work "just to be sure."
I once had a little sparkly blue-eyed girl with a puff of pale blonde hair much like Kycie. That baby girl is now 19 and reached her 16 year "diaversary" just 5 days before Kycie's diagnosis. She still has sparkly blue eyes and a giggle so infectious you can't help but laugh with her. I thank God everyday that we had a doctor who thought to look beyond the typical ailments of a 4 year old and do an extra little blood test, "just to be sure." When the tests came back, he gave us the news with quiet reassurance. He had already set up our appointments for our next step (thank goodness as I was numb) and we actually had nearly a full day to let the news sink in before we had to admit her to the hospital. In essence, we got to prepare her for her journey- a luxury most T1D kids and families do not get. Since then, I have had numerous people--friends and acquaintances--ask how we knew. I have to confess, I didn't. I was convinced Tylie had a bladder infection. I didn't see Taya's symptoms, Troy checked her because he had a weird feeling. I definitely wouldn't have seen TJ's symptoms if his moodiness hadn't reminded me of a high blood sugar tantrum. There are days I still beat myself up over that- should we have seen the signs sooner? Diabetes is sneaky. I always respond to these people, if you wonder, have your doctor run the blood work "just to be sure."
As I read the daily posts from Kycie's family, I have a renewed sense of wonder. The strength and faith this family has demonstrated is nothing short of amazing. I distinctly remember the overwhelming helplessness when learning to care for all three of my T1's. While I had more knowledge with each diagnosis, this did not make it less overwhelming. However, none of our experiences were nearly as life changing as Kycie's diagnosis. Read their Facebook posts, https://www.facebook.com/kissesforkycie. Ironically, I typically read these posts in the middle of the night after I hear one girl or the other girl shuffling around to treat a low. Even after I know they are fine again, I can't sleep. Their posts are awe inspiring and humbling and even in my anger and sadness I feel hope.
Today, I was at the doctor with Tylie. While sitting there, I still see her as that little girl covered in band-aids, frustrated that her IV pole prevented her from entering the tree house on the pediatric floor. We have reached a new phase in care that I am not that comfortable with. I am no longer the primary pancreas- she has trained well, and the job is now hers. However, I pushed this appointment because she had chosen to go a different direction with her regime and I had concerns- old habits die hard. I went into the meeting feeling nervous and afraid but left it feeling hopeful. While I'm not sure it would be the choice I made, she is forging her own way. She is able to do so, because more opportunities exist to help her manage and control her blood sugars. We will see at her next A1c if her gamble pays off, but I feel better about her plan and am again amazed by the resiliency and courage she displays. As a control freak, it is hard to let go, but it seems it's her turn to teach me! It also doesn't hurt that I have a friend at the doctor's office to give me the inside scoop!
In 4 short weeks I will be in DC with a sea of other like-minded people for JDRF Government Days. We will be advocating for continued research and the ultimate goal of a cure. This is my first time being invited to this event and I enter it now with even more resolve. Sometimes, living with this disease as long as we have, I get lulled into complacency; trying to survive day to day. New challenges my kids face and stories like Kycie's, wake me up again. Our babies need our voices, even when we are no longer their primary pancreases.
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| Know the Signs! |
Friday, November 14, 2014
Being Aware
Today is World Diabetes Day. Sixteen years ago, I did not even know there was more than one kind of diabetes. It was a word I had only heard associated with my 100 year old great-grandma. Then, life took a turn.
The first time I became really AWARE of T1 Diabetes was on January 25, 2000 at roughly 9:36 am. It is one of those moments, frozen in time that you would like to slowly rewind and then replay with a new ending. At that moment, I was numb with questions and fear of the unknown. Ironically, I had no idea then how much really was unknown- as evidenced by my question, "When will she outgrow it?" Within 24 hours, my baby was on an IV and I had added words like beta cells, pancreas, insulin, ketones, carbohydrates, and autoimmune to my daily vocabulary. We should have gotten college credit for the four days she was in the hospital and the amount of new information we were required to absorb! After a period of time we settled into the added parenting role of pancreas, and our days took on a new normal. This first time around, the biggest lesson I learned can be summed up by the quotation, "Be kind, everyone you meet is fighting a hard battle." Diabetes is sneaky, mean, and invisible to the naked eye. Sadly, people say some really stupid things!
The second time I became really AWARE of T1D, was about 18 months later. It was July 26, 2001. It was before noon when I got the message from Troy that he thought something was wrong with Taya. I was in grad school, and I remember that I was driving back from class and telling him she had to be fine; the doctor had told us having a sibling with T1 only increased the other kids' chances by 4-7%- that translated to slim chance in my mind! In one of the few incidents I had to concede that my husband was right, we took her for a blood draw and left with a glucose meter and another prescription for insulin. I was even more numb than the first time around and Troy was furious. This time, finding a new normal was even more difficult. Troy had also recently been diagnosed with his own kidney ailment, was coaching two sports, and teaching. I had just gone back to work full time and was finishing up grad school. As if that wasn't enough, we had a 1 year old and two girls under the age of 6 who required daily insulin shots and frequent fingerpokes to check blood sugar. I have said this before, God Bless my dear friend and daycare provider, Traci! The lesson I learned from this second time around was that it really does take a village. We have connected with some beautiful souls because of T1 in our lives and we have been blessed with a truly amazing support system. This doesn't take away all the pain, but it makes the worst days bearable.
The third time I became really AWARE of T1D- as if I needed more reminders- was January 8, 2010 at 7:05 pm. This was the moment I checked TJ's blood sugar and found it a whopping 536. Diabetes definitely does not play fair! If Tessa had not been home with me, I am not sure what I would have done. With the wisdom of a soon to be 10 year old, she advised me that she would watch TJ a second because I needed to call grandma. In her mind, grandma fixed everything. I knew in my heart what was happening, but my head just would not accept it. Tessa was right, I did need to call grandma. I needed someone to tell me what to do, because how- HOW- could this be happening again? Even as I type this, I can feel the hysteria rising in my throat. So I called Troy's mom. She said she would go to Taya's hockey game so she wouldn't be alone and that I needed to take TJ to the hospital and she would come up later to get Tessa. Somewhere in the midst of this, my mood went from numb to really, really angry but two funny things happened that night: 1.) Taya got two penalties in her hockey game. If you know Taya at all, you know that this is proof the stars were not in our favor that evening. She HATES the penalty box - her dad can't even pay her with ice cream to get penalties! Her only other experience in the box was when he made her serve his bench minor. 2.) After hearing our family history, the admitting doctor asked me if I had married my cousin! This still makes me giggle! The lesson I took away from this go round was you have to find the humor because if you can't laugh, you will always be crying!
The fourth time I became really AWARE of T1D was early August, 2011. We were driving to Minneapolis and I received a text from Taya's Godmother saying Addison was in the hospital and they were pretty sure it was T1D. My heart broke. T1D was now a 'normal' part of our lives, but I surely did not want this for my friend. That was when I learned the lesson that we should not keep hiding the battle - we needed to live it out loud. If we minimized it, no one would be aware and no one would fight for a cure or even care. This is why I have been posting a fact a day about what it is really like to have T1D, this is why I advocate with JDRF, this is why we walk and raise money- because the more people that are AWARE, the greater chance we have for change and ultimately, for a cure!
These kids inspire me each and everyday!
The first time I became really AWARE of T1 Diabetes was on January 25, 2000 at roughly 9:36 am. It is one of those moments, frozen in time that you would like to slowly rewind and then replay with a new ending. At that moment, I was numb with questions and fear of the unknown. Ironically, I had no idea then how much really was unknown- as evidenced by my question, "When will she outgrow it?" Within 24 hours, my baby was on an IV and I had added words like beta cells, pancreas, insulin, ketones, carbohydrates, and autoimmune to my daily vocabulary. We should have gotten college credit for the four days she was in the hospital and the amount of new information we were required to absorb! After a period of time we settled into the added parenting role of pancreas, and our days took on a new normal. This first time around, the biggest lesson I learned can be summed up by the quotation, "Be kind, everyone you meet is fighting a hard battle." Diabetes is sneaky, mean, and invisible to the naked eye. Sadly, people say some really stupid things!
The second time I became really AWARE of T1D, was about 18 months later. It was July 26, 2001. It was before noon when I got the message from Troy that he thought something was wrong with Taya. I was in grad school, and I remember that I was driving back from class and telling him she had to be fine; the doctor had told us having a sibling with T1 only increased the other kids' chances by 4-7%- that translated to slim chance in my mind! In one of the few incidents I had to concede that my husband was right, we took her for a blood draw and left with a glucose meter and another prescription for insulin. I was even more numb than the first time around and Troy was furious. This time, finding a new normal was even more difficult. Troy had also recently been diagnosed with his own kidney ailment, was coaching two sports, and teaching. I had just gone back to work full time and was finishing up grad school. As if that wasn't enough, we had a 1 year old and two girls under the age of 6 who required daily insulin shots and frequent fingerpokes to check blood sugar. I have said this before, God Bless my dear friend and daycare provider, Traci! The lesson I learned from this second time around was that it really does take a village. We have connected with some beautiful souls because of T1 in our lives and we have been blessed with a truly amazing support system. This doesn't take away all the pain, but it makes the worst days bearable.
The third time I became really AWARE of T1D- as if I needed more reminders- was January 8, 2010 at 7:05 pm. This was the moment I checked TJ's blood sugar and found it a whopping 536. Diabetes definitely does not play fair! If Tessa had not been home with me, I am not sure what I would have done. With the wisdom of a soon to be 10 year old, she advised me that she would watch TJ a second because I needed to call grandma. In her mind, grandma fixed everything. I knew in my heart what was happening, but my head just would not accept it. Tessa was right, I did need to call grandma. I needed someone to tell me what to do, because how- HOW- could this be happening again? Even as I type this, I can feel the hysteria rising in my throat. So I called Troy's mom. She said she would go to Taya's hockey game so she wouldn't be alone and that I needed to take TJ to the hospital and she would come up later to get Tessa. Somewhere in the midst of this, my mood went from numb to really, really angry but two funny things happened that night: 1.) Taya got two penalties in her hockey game. If you know Taya at all, you know that this is proof the stars were not in our favor that evening. She HATES the penalty box - her dad can't even pay her with ice cream to get penalties! Her only other experience in the box was when he made her serve his bench minor. 2.) After hearing our family history, the admitting doctor asked me if I had married my cousin! This still makes me giggle! The lesson I took away from this go round was you have to find the humor because if you can't laugh, you will always be crying!
The fourth time I became really AWARE of T1D was early August, 2011. We were driving to Minneapolis and I received a text from Taya's Godmother saying Addison was in the hospital and they were pretty sure it was T1D. My heart broke. T1D was now a 'normal' part of our lives, but I surely did not want this for my friend. That was when I learned the lesson that we should not keep hiding the battle - we needed to live it out loud. If we minimized it, no one would be aware and no one would fight for a cure or even care. This is why I have been posting a fact a day about what it is really like to have T1D, this is why I advocate with JDRF, this is why we walk and raise money- because the more people that are AWARE, the greater chance we have for change and ultimately, for a cure!
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| Haley, Addison, and Taya at camp! |
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| Taya, TJ and Tylie advocating on the Hill! |
Wednesday, October 15, 2014
Invisible Battles
I am writing this post feeling frustrated, sad, and more than a little angry. I want to tell you a story of a little girl. This little girl was born struggling for her life. She spent days in the NICU, while doctors worked of clear an infection raging through her body. She hardly cried, even as she was poked in a new place each day for blood or new IV when her little veins wouldn't cooperate. As she got older, she kept that stoic persona but her big blue eyes didn't miss a thing. Her first words were "Me, too" because she wanted to be just like her sister. At age 4, she actually smiled when she skipped out of the hospital with her new diabetes kit- just like her sister. After the first day, the smiles only came between wrestling her to the ground to give shots between meals. Oh, the tears she cried- everyday for 6 years. But, she battled through and the only people that saw those tears were us at home. She played hockey, volleyball, and soccer. She went to school and hung out with friends. Very few people would say she wasn't like everyone else. On her 10th birthday, she got an insulin pump, cutting the tears back by gallons but not the frustration and pain that comes with a life long disease. Now at age 17, she is still fighting that battle. She continues to be active in school, recently elected president of DECA. She plays hockey, works part time, and wants to tour colleges that will help her get into med school. On the outside, she is your typical 17 year old girl. On the inside, she cries. My fear is that she is losing her battle. In her effort to pretend she is just like everyone else, she isn't taking care of herself. When she was little, I could do some of the work for her, take some of the burden. But, now, so much is in her hands and I don't know how to help her find a balance that works for her, that doesn't make her feel like she isn't like everyone else.
In the last month, I have gotten a call from our diabetes educator regarding both girls. She is worried. I am worried. I wish it would go away. I wish. It is the simplest of sentences but yet so complex. I was listening to a friend talk about the 3 C's of addiction that families must understand. "I didn't CAUSE this." "I can't CONTROL this." and "I can't CURE this." In the middle of his story, I blurted out, "That sounds a lot like parenting children with diabetes." That first C is a whole other blog post and that third C, I have written about before but that second C- that's the one I'm struggling with right now. When they were young, control was what we fought for; good blood sugar control, that is. Some battles we would win and many we would lose. Changing dosages, times of delivery, more frequent checking of blood sugars, taking out this snack and adding in this one- all strategies to try and find that elusive control; the balance between sugar and insulin. While we still strive for blood sugar control, as they get older the decisions they make are more theirs and less mine. I can advise, punish, take a step back, nag, scream, and even cry to try and influence their daily decisions (and I have tried!) but they are not mine to make. Again today, we sat with the educator searching for the answers. We talked about progress in research, promising breakthroughs, and future appointments. Unfortunately, none of those things are helping her right this minute and I lack the words to make this all better. It is not an owie that a kiss or a funky band-aid will fix. I tell her we are not angry at her, that we want her to be successful, that we are proud of her, that we understand this sucks. I don't know what she hears. I know she is angry at the cards she was dealt. I know she is sad when she feels she is disappointing us. I know she wants to never see a glucose monitor again. I know just being a teenager and the trials that alone brings increases her burden. In my mind, she is still that baby girl fighting for her life. I want her to keep fighting. I don't want her to let this disease win; it doesn't deserve to win. How do I help her find a way to conquer what must feel like an unconquerable demon? I wish I could slay it for her.
In the last month, I have gotten a call from our diabetes educator regarding both girls. She is worried. I am worried. I wish it would go away. I wish. It is the simplest of sentences but yet so complex. I was listening to a friend talk about the 3 C's of addiction that families must understand. "I didn't CAUSE this." "I can't CONTROL this." and "I can't CURE this." In the middle of his story, I blurted out, "That sounds a lot like parenting children with diabetes." That first C is a whole other blog post and that third C, I have written about before but that second C- that's the one I'm struggling with right now. When they were young, control was what we fought for; good blood sugar control, that is. Some battles we would win and many we would lose. Changing dosages, times of delivery, more frequent checking of blood sugars, taking out this snack and adding in this one- all strategies to try and find that elusive control; the balance between sugar and insulin. While we still strive for blood sugar control, as they get older the decisions they make are more theirs and less mine. I can advise, punish, take a step back, nag, scream, and even cry to try and influence their daily decisions (and I have tried!) but they are not mine to make. Again today, we sat with the educator searching for the answers. We talked about progress in research, promising breakthroughs, and future appointments. Unfortunately, none of those things are helping her right this minute and I lack the words to make this all better. It is not an owie that a kiss or a funky band-aid will fix. I tell her we are not angry at her, that we want her to be successful, that we are proud of her, that we understand this sucks. I don't know what she hears. I know she is angry at the cards she was dealt. I know she is sad when she feels she is disappointing us. I know she wants to never see a glucose monitor again. I know just being a teenager and the trials that alone brings increases her burden. In my mind, she is still that baby girl fighting for her life. I want her to keep fighting. I don't want her to let this disease win; it doesn't deserve to win. How do I help her find a way to conquer what must feel like an unconquerable demon? I wish I could slay it for her.
Monday, July 28, 2014
Significance
From the very beginning, I can remember being told "Always remember, it's just a number, it's not good or bad." Of course, they were referring to the number on the glucose meter- the number that tells us whether the blood sugar is too high, too low, or that magic, Goldilocks 'just right' number. In truth, the number itself has little meaning at all, it is what it symbolizes. Let me preface this little essay be telling you what is normal for a non-diabetic person. If you were to check your blood sugar when you woke up- a fasting blood sugar- it should be between 70-90 mg/dL. A blood sugar reading two hours after eating should be less than 140 mg/dL. The girls have a target blood sugar of 100 mg/dL. TJ's is a little higher at 125 mg/dL. If we had a day when all 3 kids blood sugars ranged from 100-140, I would consider that a Goldilocks day. (By the way, it has never happened; being a pancreas is ridiculously demanding. I wouldn't recommend the job to anyone.) On any given day a reading of 250 is considered high. A number like that would make me shake my head and frown and start the guessing game: Is it sickness? Bad site? Insulin gone bad? Dehydration? Full moon? Wind from the wrong direction? However, a reading of 250 after 3 readings over 500 brings a sigh of relief- we are headed in the right direction. This morning TJ did a little happy dance because his wake up blood sugar was 111. He had spent the day in the 200's yesterday- it's a big deal.
Numbers are significant not just in relation to blood sugars but in other ways as well. For example, last year, Tessa turned 13. The 13th birthday is a big deal in a happy way. The 13th Diaversary, that Taya hit last week has a totally different significance. Is it happy? Well, sure, she has LIVED with diabetes for 13 years. Is it sad? Well, sure, she has lived with DIABETES for 13 years. I think a fitting descriptive term might be bittersweet. In January, Tylie will reach her "Sweet Sixteen" Diaversary. Are you catching the irony in these last two statements or is that just poor D-mom humor?
Back to the numbers- according to the Center for Disease Control, the prevalence of T1 D in Americans under age 20 rose 23% between 2001-2009. Current estimates are that 80 people per day are diagnosed with Type 1 diabetes. The rate of Type 1 diabetes in children under age 14 is expected to rise by 3% annually worldwide. Now, those numbers are disturbing- not good or bad- just flat out alarming. I do feel the need to differentiate here. I am speaking solely about Type 1 diabetes. Simply speaking, in Type 1 diabetes, the bodies immune system destroys the beta cells that produce insulin. It used to be called Juvenile-Onset Diabetes or insulin dependent diabetes. At this time, it cannot be prevented or delayed. There is no cure but there is insulin and different management options available for treatment. I will be honest, Tylie's doctor at diagnosis stated to us that she had Juvenile Diabetes. I clearly remember saying to him, "Well, if it's Juvenile, at what age will she outgrow it?" Yes, I have learned a lot in 15.5 years! Type 2 on the other hand, can be prevented or delayed by lifestyle choices. While Type 2 is rising at an equally alarming rate and I don't mean to minimize it- please, do not confuse the two types- again the number may not be good or bad, but it is significant! Well-meaning individuals telling a tiny, energetic 38 pound 4 year old that she shouldn't have eaten so many fruit snacks or asking her if she watched too much tv instead of playing outside is a bit devastating. (True story.)
Numbers- in our house, we make them a game. If two kids happen to be testing at the same time, they guess who will be closest to target. If they happen to have the same number, we laugh. If it says 123, we laugh. We laugh, because you can't cry everyday. These are numbers that the average person has no idea about. Those lucky enough to have a perky pancreas that does the thinking for them have no idea of the rise and fall in blood glucose daily. Sadly, we know almost hourly and even though we make it a game, many days it feels like there are no winners.
I am reading a book right now called, Daring Greatly , by Brene Brown. I started reading it as a teacher but there has been a lot of take away for me as a mother. In the book, she states that we have to recognize that "we are enough." That is a hard one for me because I like things to be perfect and neat. I like to know the answers in advance. Yeah, uh huh, I know, I am a parent and more, the parent of three T1D kids- life is not neatly wrapped and I cannot do or predict it all. (Wow- I just said that!) Another significant point in the book is in regard to taking risks. I see these two going hand in hand because in my effort to make life be neat and tidy, I have not always let people really understand the impact of T1D on our lives. People looking in often say we make it look so easy. I think I am doing a disservice to my children and all those other families living with T1 by letting people believe that. It's hard, hard 24 hour, 7 days a week, 365 days a year work! The risk I have decided to take on this year is educating and advocating. If people don't want to hear about it, they don't have read my social media posts or my blog. For me to accept that I am enough, I need to feel I am doing enough. I might write a thousand posts and people may read only one thing that they can take away. That number is neither good, nor bad- it is significant.
Numbers are significant not just in relation to blood sugars but in other ways as well. For example, last year, Tessa turned 13. The 13th birthday is a big deal in a happy way. The 13th Diaversary, that Taya hit last week has a totally different significance. Is it happy? Well, sure, she has LIVED with diabetes for 13 years. Is it sad? Well, sure, she has lived with DIABETES for 13 years. I think a fitting descriptive term might be bittersweet. In January, Tylie will reach her "Sweet Sixteen" Diaversary. Are you catching the irony in these last two statements or is that just poor D-mom humor?
Back to the numbers- according to the Center for Disease Control, the prevalence of T1 D in Americans under age 20 rose 23% between 2001-2009. Current estimates are that 80 people per day are diagnosed with Type 1 diabetes. The rate of Type 1 diabetes in children under age 14 is expected to rise by 3% annually worldwide. Now, those numbers are disturbing- not good or bad- just flat out alarming. I do feel the need to differentiate here. I am speaking solely about Type 1 diabetes. Simply speaking, in Type 1 diabetes, the bodies immune system destroys the beta cells that produce insulin. It used to be called Juvenile-Onset Diabetes or insulin dependent diabetes. At this time, it cannot be prevented or delayed. There is no cure but there is insulin and different management options available for treatment. I will be honest, Tylie's doctor at diagnosis stated to us that she had Juvenile Diabetes. I clearly remember saying to him, "Well, if it's Juvenile, at what age will she outgrow it?" Yes, I have learned a lot in 15.5 years! Type 2 on the other hand, can be prevented or delayed by lifestyle choices. While Type 2 is rising at an equally alarming rate and I don't mean to minimize it- please, do not confuse the two types- again the number may not be good or bad, but it is significant! Well-meaning individuals telling a tiny, energetic 38 pound 4 year old that she shouldn't have eaten so many fruit snacks or asking her if she watched too much tv instead of playing outside is a bit devastating. (True story.)
Numbers- in our house, we make them a game. If two kids happen to be testing at the same time, they guess who will be closest to target. If they happen to have the same number, we laugh. If it says 123, we laugh. We laugh, because you can't cry everyday. These are numbers that the average person has no idea about. Those lucky enough to have a perky pancreas that does the thinking for them have no idea of the rise and fall in blood glucose daily. Sadly, we know almost hourly and even though we make it a game, many days it feels like there are no winners.
I am reading a book right now called, Daring Greatly , by Brene Brown. I started reading it as a teacher but there has been a lot of take away for me as a mother. In the book, she states that we have to recognize that "we are enough." That is a hard one for me because I like things to be perfect and neat. I like to know the answers in advance. Yeah, uh huh, I know, I am a parent and more, the parent of three T1D kids- life is not neatly wrapped and I cannot do or predict it all. (Wow- I just said that!) Another significant point in the book is in regard to taking risks. I see these two going hand in hand because in my effort to make life be neat and tidy, I have not always let people really understand the impact of T1D on our lives. People looking in often say we make it look so easy. I think I am doing a disservice to my children and all those other families living with T1 by letting people believe that. It's hard, hard 24 hour, 7 days a week, 365 days a year work! The risk I have decided to take on this year is educating and advocating. If people don't want to hear about it, they don't have read my social media posts or my blog. For me to accept that I am enough, I need to feel I am doing enough. I might write a thousand posts and people may read only one thing that they can take away. That number is neither good, nor bad- it is significant.
Thursday, July 10, 2014
Throwing it Back and Moving it Forward
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| JDRFCC 2013 |
I have been terrible at blogging. I would like to spend my days telling you all about life with T1 D. However, first that could get downright depressing and second, we are busy living our days. Some days are good and some days, not so much. I would be dishonest if I didn't tell you I roll my eyes sometimes when people go on and on about their child's sniffle. I know this isn't fair of me as each family has their own reality and what has become normal for us would constitute Hurricane Katrina for someone else. I know this, because that was once us. I found myself alone one afternoon when two of the kids were at D camp and the other two were not at home. I did not know what to do with myself. I literally felt as if I were crawling out of my skin. At that moment, it occurred to me that I am so used to living with that element of chaos always in the shadow ready to leap out and attack in the form of a low blood sugar, keytones, lost site,or some other T1 annoyance that when the threat was removed, I was lost. This discovery made me want to jump for joy and sob with sadness at the same time. Joy- here I was for a few hours- FREE! No insulin to inject, no carbs to count, no fingers to poke. On the flip side- sadness because this is not something my kids can be free of- this disease is "managed" not "cured". Just because I wasn't watching over them the insulin, fingerpokes, and carbs were still part of their every moment. In turn, I felt humbled thinking of these kids at camp. The strength in those little wooden cabins could move mountains.
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| Three of my inspirations! |
Monday, May 12, 2014
Stolen Nights
Diabetes sucks much of the the time but it particularly sucks in the middle of the night. Last night alone, it interrupted my sleep 3 times. Once for a high, once for a low (different kid), and the third time to do a set change because the high wouldn't come down. Oh, how I long to sleep through a night. However, even when diabetes doesn't officially wake me up, I still don't sleep. Somewhere around 3 am, I always seem to wake up feeling unsettled. I toss and turn to no avail and finally, get up and take a trip through the house. Once I am assured all babies are breathing and appear to be in a solid state of slumber, I attempt to return to my own sleep. Sometimes it works, sometimes it doesn't. I have a hard time shutting my brain off. The 'I wishes' and the 'what ifs' and the "to do' lists keep knocking around and growing and tangling like the branches of dogwood trees. Some thoughts are related to work, some are related to normal family things like money and time and why I can't keep the house clean for 5 minutes but usually, it's diabetes.
Diabetes consumes our time. Just this morning, I received a call from a crying child attempting to get her blood draw at the lab. They are changing the computer system at the hospital and they were missing information and orders. She spent over an hour there, only to leave having nothing done. I called to confirm if she even had an appointment. She does. So before noon, diabetes has taken up over 2 hours of her time and that doesn't include the minutes it took her to check her blood sugar and bolus for her carbs. I am angry that those 120 minutes could not be used for normal 16 year old worries- like where she will meet her friends for lunch and what to study for the chemistry final. Factor in the amount of time we have spent on the phone scheduling appointments, in the waiting room waiting for appointments, in line at the pharmacy and well, that's a lot of time!
Diabetes consumes our space. Test strips litter the floors, in cars, in cupboards, in purses and bags. This morning I found a canula for a pump in my computer bag. Literally half of my bathroom linen closet is full of D supplies as well as a kitchen cabinet. I may be a bit of a hoarder, but well, diabetes is unpredictable. Diabetes also fills one entire drawer in TJ's dresser- yep, D t-shirts from camps and walks are outnumbered only by shirts representing his favorite hockey players.
Diabetes consumes our emotions. There is not a minute that goes by when it doesn't cross my mind, when it doesn't effect my child's day to day life. The amount of time I spend thinking about it can't even compare to theirs- living with it each day. Two of them always attached to something- the only break when they take a shower. The other gives herself shots from 5-10 times a day. I don't think anyone could understand the frustration of a child who has just done a set change- essentially given themselves a shot- only to have it fall out a minute later and have to do it all over again. Or disappointment of a blood sugar so low, he can't play the game. Or the pain of a blood sugar so high she can't stop crying and her head is pounding and no amount of insulin and fluids seems to want to make it better.
But, then there is that moment in the middle of the night that I say a bit of thanks. Last week, someone's precious baby did not wake up. Her blood sugar went so low in her sleep, she could not recover. This morning instead of cursing the mess of cereal and empty juice boxes on the counter, I said a silent thank you for waking her up. I have 4 incredibly amazing children, 3 of whom live each day with a challenge no one else can see. Everyday, that challenge worries me, angers me, frustrates me, and every night it steals my sleep. They did not ask for it, they did not earn it, and they cannot give it away. But, the key word is that they LIVE -with courage, compassion, and optimism. People ask me how "I" do it. In truth, I don't! They do and because they do, I will not stop fighting for a cure, for awareness, for education. I am an advocate for JDRF because they fight for my children so that someday, we may all sleep peacefully through the night.
Diabetes consumes our time. Just this morning, I received a call from a crying child attempting to get her blood draw at the lab. They are changing the computer system at the hospital and they were missing information and orders. She spent over an hour there, only to leave having nothing done. I called to confirm if she even had an appointment. She does. So before noon, diabetes has taken up over 2 hours of her time and that doesn't include the minutes it took her to check her blood sugar and bolus for her carbs. I am angry that those 120 minutes could not be used for normal 16 year old worries- like where she will meet her friends for lunch and what to study for the chemistry final. Factor in the amount of time we have spent on the phone scheduling appointments, in the waiting room waiting for appointments, in line at the pharmacy and well, that's a lot of time!
Diabetes consumes our space. Test strips litter the floors, in cars, in cupboards, in purses and bags. This morning I found a canula for a pump in my computer bag. Literally half of my bathroom linen closet is full of D supplies as well as a kitchen cabinet. I may be a bit of a hoarder, but well, diabetes is unpredictable. Diabetes also fills one entire drawer in TJ's dresser- yep, D t-shirts from camps and walks are outnumbered only by shirts representing his favorite hockey players.
Diabetes consumes our emotions. There is not a minute that goes by when it doesn't cross my mind, when it doesn't effect my child's day to day life. The amount of time I spend thinking about it can't even compare to theirs- living with it each day. Two of them always attached to something- the only break when they take a shower. The other gives herself shots from 5-10 times a day. I don't think anyone could understand the frustration of a child who has just done a set change- essentially given themselves a shot- only to have it fall out a minute later and have to do it all over again. Or disappointment of a blood sugar so low, he can't play the game. Or the pain of a blood sugar so high she can't stop crying and her head is pounding and no amount of insulin and fluids seems to want to make it better.
But, then there is that moment in the middle of the night that I say a bit of thanks. Last week, someone's precious baby did not wake up. Her blood sugar went so low in her sleep, she could not recover. This morning instead of cursing the mess of cereal and empty juice boxes on the counter, I said a silent thank you for waking her up. I have 4 incredibly amazing children, 3 of whom live each day with a challenge no one else can see. Everyday, that challenge worries me, angers me, frustrates me, and every night it steals my sleep. They did not ask for it, they did not earn it, and they cannot give it away. But, the key word is that they LIVE -with courage, compassion, and optimism. People ask me how "I" do it. In truth, I don't! They do and because they do, I will not stop fighting for a cure, for awareness, for education. I am an advocate for JDRF because they fight for my children so that someday, we may all sleep peacefully through the night.
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