Its April 1st already and time to once again join in with the WEGO Health blog challenge! I enjoy doing this. Its a great time to connect with new blogs that you may not otherwise come across. The WEGO people also provide interesting prompts that require me to look at life from a slightly different perspective. Its great!
Day one asks us to either write about why we got involved with the Health Activists Writer’s Month Challenge or talk about how we started on this path, so I decided to talk about me! Actually, its because I can’t remember how long I have been doing the challenge or what made me start…except probably the fact that it was an interesting challenge.
But back to me!! Why do I write about my life with a child with diabetes online? For the therapy. Quite simply, that is in part why it began. Writing, journaling, and such has always been my way of getting out thoughts, feelings and emotions. If I wrote it out, I could work through it.
I began to write about my challenges. I wrote about our successes. I chronicled my fight with the federal government to get the Disability Tax Credit. I wrote about trying to choose an insulin pump for the first time. Eventually I also began to talk about our day to day life. The challenges of a preteen, and now the challenges faced in living with a teen. We deal with hormones and independence.
I write to share my fears. I write to share our joys. I write to educate and to create awareness. My son was diagnosed with Type 1 diabetes in March of 2000. I was an educated young mother of two boys. I knew about teething. I had been through the flu, colds and potty training but I knew nothing of diabetes until it barged into our lives and almost killed my son. In writing about Type 1 diabetes today, I hope to educate other parents, grandparents and the general public on what Type 1 diabetes is and the reality of how it impacts families and their lives.
Over the years, writing has also allowed me to connect with other parents and those living with diabetes. It gives those who have not yet reached some of the stages we have to see how we have handled things and what they can expect. It also helps those who are also living with a teen with type 1 know that they are not alone in their struggles and the strange victories that only those who live here can truly appreciate.
There you have it…why I write about type 1 diabetes. I am looking forward to the many thought provoking challenges presented over the next 30 days. I am equally looking forward to learning new things about other health writers. Let the fun begin!!
Its the last day of the Health Activist Writer’s Month Challenge and I made it!!! I actually posted, on time, all 30 posts!!! Tomorrow I am supposed to do a recap but I am afraid that will have to be late. Tomorrow I have a big surprise for readers that is way more important than a recap of my ramblings.
For the last day, the task was to create a word cloud for our health condition. So here it is…I cheated a little. I didn’t create a cloud with words, I put words on a cloud and because I can see a few rainbows from this horrible disease, well I added a rainbow too!
We are winding down and coming to one of the last posts for the Health Activist Writer’s Month Challenge. Today’s is exceptionally tricky…Tell a story in only six sentences!! Wow! I like to ramble. This will be a challenge that will require a LOT of editing I am sure but here it goes….
You were high. Did you do a site change?
I was going to but I got it down with corrections.
You needed a site change.
You would do a site change. Personally, I don’t do a change until I absolutely have to and since I came down, I really didn’t have to!
Today’s challenge is to write about a first. There are so many firsts in diabetes…the first time you inject your child. The first time you test their blood. The first time you make a dosing adjustment. The first time you let them go to a friend’s house without you. The first time they have ketones. The first time they go low…
We were not allowed to leave the hospital until my son’s blood glucose level went low at least once. It was a safe place for this to happen. He was two. He had no way of telling us how he felt. I was terrified as to how either of us would react when he went home. Eventually we did have to go home however and trying to regain some sort of control of our lives was not easy.
I tested. I injected. I watched. I lived by the clock. I counted each exchange. Food was restricted and fights with a toddler were many. Life was not good but it got worse…
The first time that I remember my son going low at home definitely puts me in the “World’s Worst Mom” category. We had not been home from the hospital for long. It was early spring. The snow had finally gone. The boys and I were enjoying the chance to be outside. They were playing and I was working on my yard.
As I worked, my youngest son began to get fussy. He was demanding. He wanted to go inside. He was whining and basically being an annoying two year old who desperately needed to go for a nap. I told him to give me just a few minutes. I would be done soon and we could go inside.
I never paid him any more attention. I continued doing what I was doing. Diabetes never entered my mind. It lived on the fringes. Memories of the hospital were still fresh. Living by the clock was our new way of life but “other” fears were not yet as strongly entrenched.
I tended to my garden, moving rocks and dirt. My son was quiet so I assumed that he had gone back to playing with his trucks and amusing himself until I was done. I finally turned around and looked for him. My heart stopped.
My son was laying lifeless on the ground. What had happened? What had I done? Instantly, I had him in my arms and was screaming at my older son, “Open the door for me now!!!”
I raced through the house and put my son on my bed. I ran to the washroom to get a clean face cloth to wash his hands and had my older son get me the glucometer. I shook as I tested his blood. He was low. How low? I don’t remember. I just know that I brought juice to his lips and prayed he would drink. He did!
Within a minute he was awake and wondering what my problem was. He wanted to go and play. I bribed him with watching his favorite show on TV instead. I knew he had to retested. His blood glucose level still had to go up some more.
I watched him as he sat, content and oblivious to the chaos that had just ensued. I continued to shake. What ifs ran through my mind. I would never ignore him like that again. I couldn’t. Diabetes was not interested in my timetable, its demands were to be met NOW!
I can’t say that that was the last time he went low but I can say that it was the last time I found him asleep in the dirt. There were many other “firsts” in our lives. Some were bitter sweet and some remain terrifying but such is life with diabetes.
|5 Challenges & 5 Small VictoriesMake a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.|
We are winding down the month and coming to the last few posts for the Health Activist Writer’s Month Challenge but the challenges are still just as thought provoking.
The five most difficult parts of living with diabetes (in no particular order)
1. Sleeping. Every night when I go to bed, I wake and wonder, “Should I test? Is he low? Is he high? Is it okay for me to sleep? Is he alive? Did I sleep through something that I shouldn’t? Will he ever wake on his own when he is low?” This happens if he is in the next room or across the province.
2. Letting go. My oldest son slowly (and sometimes more abruptly) pushed me away as he spread his own wings and learned to sink or swim on his own. For my son with diabetes, spreading his wings means more than just issues of handling drugs, drinking and other peer pressures. It means being able to handle his own health care. Its testing, avoiding lows, dealing with highs, bolusing food and being prepared for emergency site changes and low insulin cartridges.
3. Trading a diaper bag for a diabetes bag. I look at women with small purses and wonder how in the world they do it? Each time I have to fly without my son, my purse becomes a few pounds lighter as I begin to remove things like spare insulin, syringes, lancing devices, meters, glucagon, glucose gel, glucose tabs, alcohol wipes and more. For small trips, we must remember all of those things plus a few more…just in case!
4. Living life on a roller coaster. Never knowing if he will be high or low or living through the days when he is both. The uncertainty of diabetes can mess with vacations, outings and just your daily routine.
5. Knowing it won’t get better. The absolute worst part for me has been knowing that no matter how hard I work, no matter what I teach my son, he will not get better for all of this care. He will avoid complications. He will live a normal life but there will be no respite. He will always need to test. He will always need to count carbs. He will always need to bolus. He will always need to be on guard. He will always need to look at how his body reacts to his actions. It never ends. There is no break.
The five things that keep me going?
1. Amazing friends. The support network that diabetes has brought into our lives is second to none. I do not know what I would do without my amazing friends. We don’t see each other every day. We don’t talk every week but when you are in need—because of diabetes or just life, they are there for you 100%. They have become family in their own right.
2. Technology. The changes that have happened over the years have made our lives better. We get excited when we see new meters on the market to try out. We enjoy seeing what technology the latest pump will make use of. These little victories in our diabetes care brighten a few moments in our lives.
3. Emails from strangers. When I feel like I have done nothing and I am helping no one, I get an email or a phone call out of nowhere thanking me for all I have done. They (you) lift my spirits and empower me to keep going.
4. Victories. Getting the federal government to change the Disability Tax Credit to make it more fair. Advocating more and more provincial governments to cover insulin pump therapy. Teaching schools and personnel what diabetes really is and how to help our children.
5. Bringing people together. Going to events, especially ones that I have help organized or am a part of, and seeing people with diabetes come together. During these times we talk to old friends, we work together to help new ones. I walk a way with a sense of purpose and pride. I know I can go on to fight another day.
Do you remember the chocolate bar that my son brought home before Easter holidays? The one that he was not allowed to eat? Today we found out that this chocolate bar is not really a bar with almonds. Its a bar with special chunks that cure diabetes!
Seriously!! These small little particles that look like nuts are actually small encapsulated cells. The coating allows them to be dissolved in the stomach and release insulin. Instead of being destroyed, these little guys are absorbed into the blood stream! The larger “nut” chunks go to work in the pancreas creating long term benefits.
These larger chunks are actually specially designed beta cells. They move through the body and head back to the defunct pancreas. These amazing chunks then work with the pancreas and regenerate themselves. After approximately a week of chocolate bars for breakfast, lunch and supper, the person with diabetes will notice substantial changes in their body and their insulin needs.
First, they will not require any insulin to cover the bars because the small particles are supplying them with just the right amount of basal and bolus insulin. Second, they will soon not require any insulin at all because their body will quickly begin to produce its own insulin based on the regenerating beta cells.
After years of people saying “sweets cause diabetes” and parents of children with type 1 rolling their eyes and explaining how wrong they are, we are finally vindicated. We can now say…Chocolate bars? Yes I feed them to my child with diabetes multiple times per day. Didn’t you know? They CURE diabetes!
Oh the joy! No more needles, no more pumps, no more night time tests. Now its just chocolate and then CURED! Its time for the “we used to live with diabetes” get togethers. Ah what a long road but it feels so wonderful to finally have success…a CURE for diabetes!
No I have not completely lost my marbles. While a do remain a few short of a complete set, the WEGO writers challenge for today was create a miracle cure. Sadly, there is no miracle cure. I wish a cure was a simple and giving someone a chocolate bar three times per day. In the meantime we will keep working towards good health and funding research that may one day lead us to that goal.
Another day, another Wego Health Activist Writer’s Challenge! Today’s question is to come up with five people that you would love to have dinner with. Once again I have been challenged to really think. I am very blessed to have been able to have dinner, or lunch, or breakfast with many amazing people in the diabetes world so who would I want to sit down with now?
The first person I would want to join me would be Frederick Banting. I would be very curious to know how he felt to have changed the lives of so many people. I would be curious to know what he thought of the fact that research had not progressed as quickly as he had anticipated and ask him what he would do differently today.
Person number two would be the person behind the Cozmo insulin pump. I am sure that there was more than more person involved in the creation of this device but for this meal, they would all be rolled into one being. I would thank them for the most amazing insulin pump ever. I would beg them to take their knowledge and bring it to one of the remaining insulin pump manufacturers to reproduce. They would be told that they have spoiled us for any other pump and we desperately want to maintain their technology in our diabetes life.
My third guest would be Betty Fox. I know, she had nothing to do with diabetes but she was one of the most amazing parents of the last 100 years. Her strength in the face of adversity is something I admire. She raised a son who faced death and when asked “why you?”, he is said to have responded “why not me?” She took his legacy and maintained something that is still very much alive today. I would love to know how she did it. How did she brave through her son’s illness and death? How did she rise up to go on with such poise and dedication right up until her own death? How did she create this amazing family that continues to keep giving (her husband has picked up where she and their son left off).
I would also invite Martin Luther King Jr. I would be interested in learning from a person who could empower people and create such amazing change. How he would deal with modern day governments and create equity for people living with diabetes would be of interest to me.
The final person I would want at the table with me is my friend Kim. Kim is an amazing mother with a son close to the age of my youngest son who also lives with diabetes. I am blessed to have a lot of amazing mom friends in the diabetes community but I think I would need Kim at this dinner for one reason–she is so thoughtful and full of all of the right questions. She is a wonderful woman that I know would come up with all of the questions that I missed. She would be able to speak on behalf of other parents where I missed. Between us, we would get answers and thoughts on the tough questions.
As difficult of a task as I thought this was at the beginning, I can truly imagine sitting at a table with this amazing group. I hope dinner began early however, because I can well imagine conversations stretching late into the evening but the wealth of knowledge that I would take away from it would be immeasurable!
Today’s Health Activist Writer’s Challenge is to choose a book, open it to a random page, find a phrase and use that phrase to stimulate writing. I have no shortage of books around. As I have said before, I love reading. I love the written word. I love books! As I glanced around my office I saw James Patterson’s Kill Alex Cross, Harmonic Wealth by James Arthur Ray and so many more. What to choose?
I decided on the little book that was hiding between Alex Cross and The Book of Better. I love Mitch Albom books so this seemed to be a great choice. For One More Day is the most recent book of his that I have read. I opened to page 83 which lead me to 84 and the following sentence that struck a chord…
“…lost is lost, and I knew that look because I had worn it myself. I hated her for having it. I hated her for being weak as I was.”
There is so much in that small bit of prose. I can see myself as the author– being upset when my son has failed in his diabetes care. In those times when I have allowed him to go on his own with little outside influence from Mom and he fails? I then feel lost and upset. I first get mad at him for not stepping up to the plate and then I quickly hate myself more. How could I expect so much from someone so young?
I feel lost trying to find that balance. Diabetes has robbed so much from my son’s childhood and as a parent it is my job to keep its toll to a minimum. I have said before, it just does not seem right that a child should know what carbohydrates are before he can recite his ABC’s. Lancing his finger and drawing blood should not be a milestone marked with a feeling of pride…but in our life it was.
This quote also makes me wonder what my son must think at times. Mom is the strong one. Mom makes the choices when it comes to his care. Mom is the one who knows more than some of the experts we see. Mom is the one that people call to know “stuff”. What must he think when Mom loses it? When he is scared, Mom is not supposed to be lost and scared. Mom is supposed to have it together.
I remember once when Mom really didn’t have it together. It seemed that my carefully constructed world was falling down around me like a deck of cards. I could no longer hide the pain from anyone. I literally sat in the middle of my kitchen floor and cried. My oldest son sat with me. My heart broke that he had to see me like that. My younger son hid. He was very much like the author. I could see that he hated seeing me so weak. I understood and hated myself even more.
We are human however. Diabetes makes us superheros but also reminds us that we are mere mortals. Its a challenge to make sure that the moments of feeling lost and overwhelmed are reserved for the confines of a shower when no one else can see. Its a challenge that I work at more and more with each passing year. Its important to be that willow tree, bending with the wind and not the lost leaf blowing around lost and scared. Its a challenge but one that I hope I meet more often than I fail.