Day two of the Health Writers Activists Monthly Challenge and today its all about what I would tell or have told the newly diagnosed. At first I was not going to do this topic. I don’t really write to the newly diagnosed–do I? I mean, I just ramble about things that we are dealing with now. Diagnosis was a very long time ago. What do I have to offer?
I then realized that yes I do write to the newly diagnosed. I talk to them at conferences. I respond to them on Facebook. I let them know that it will be okay.
They will find humor in the strangest places….Like this past Christmas season when my teenage son discovered the reason for this night time high blood sugar levels–the dog was feeding him in his sleep! There was also the time that my son decided that he no longer should be doing his own site changes. His doctor suggested that he do them since he was about 13 and now at 15 he has had enough. His reasoning was typical teen and another source of comic relief for an often draining disease.
We need comic relief because there will be times that parents will feel overwhelming fear. This is normal. Its the new normal that comes from living with a brutal and unforgiving, silent disease. It will sometimes lead to depression and it is important to recognize it, accept it and get help to find a way to move forward. We all have our days when we want to be the way we perceive the rest of the world to be. We want sleep. We want a life without injections or insulin pumps. We don’t want to see blood or test strips but there are sunny days. There are people who understand. You will make it through another day and begin to accept your new normal–I promise.
There is no choice. The alternative is not worth thinking about accept when counting your blessings. Our children are strong. They are younger versions of us and we are making it. They will amaze us and frustrate us. Diabetes will not hold them back from being incredible.
Type 1 diabetes is much more than “take an injection and call me in the morning”. It changes our lives. It changes our perspective. It demands our time and our efforts even when we don’t want it to but our chidren are alive. We will connect with amazing new people who also live this life. There will be downs but there will be ups and over time you will learn to live life with diabetes not for it.
Last night I got an email from fellow Diabetes Advocate Mike Durbin asking everyone to take part and/or spread the word about “Diabetes Blessings Week“.
With the American Thanksgiving holiday coming up, I have seen many friends noting the things that they are grateful for throughout the month of November. Gratitude is a great practice and something that I promote in my Life Coaching practice. It is also something that I try to incorporate into my own life.
Mike asked that we blog about a few of the blessings that diabetes has brought into our lives. Ideally you would look at one blessing per day for the week of November 19-25th. Since I am a day late in getting started, I will try to come up with two for my first day…
Actually the top two are simple and intertwined. My diabetes family and CWD conferences.
Its has been almost twelve years since I “found” my family. I had just gotten onto the Internet for the first time. I searched “parents of children with diabetes”. I was instantly sent to a website and a parents email list. There I posted a question about a battle I had been having with my toddler–trying to convince him to eat after giving his insulin. We had been experiencing tears, vomiting, and terrifying lows. I was at my wits end.
Within seconds I received two emails back from parents telling me what I already knew but for some reason could not do. They told me not to give him insulin until after he ate. It was so simple but until another parent told me, I could not grasp NOT giving my son insulin.
That was just the beginning. Over the years, these face-less friends became my support. They were there through the good times and the bad. They understood the bittersweet feeling of having your four year old being able to lance his own finger and draw blood. They understood the exhausting nights and the drag your butt days. They were there to pull me out when I just wanted to curl up and hide under a rock for awhile. They were there through diabetes fights, political battles and personal struggles. No matter what was going on, there was always a strong shoulder to cry on and firm hand to push me forward.
|Beach party with our amazing Friends for Life!|
As the years went by, I was able to share the wisdom taught to me with others. I was also able to meet some of my nearest and dearest friends in person. I travelled to visit some at a beach party. I later travelled to visit others at what has become the foremost diabetes conference in North America–CWD’s Friends For Life. It is the one place on earth where friends connect and friendships truly are made for life.
|Just a few of the amazing people that I am blessed to call “friends”|
Imagine how blessed I felt when I was asked to not just attend a FFL conference but be a part of the staff? I was honored I was humbled. Each year that I attend, I have to pinch myself. I am surrounded by the most amazing people in the diabetes world. Parents, doctors, nurses, educators and advocates…and me. It truly is the high point of my year when I am there!
Diabetes, despite its brutal nature, has brought many blessings with it. The two that make each day a little easier are definitely the incredible friendships I have made and the gathering of those friends at FFL Conferences each year.
|More of my wonderful friends!|
I have said it time and time again, CWD conferences truly are the very best events out there for people living with diabetes. Vendors who fail to take part are missing a lot. Families who do not take part are missing a lot. People with diabetes who do not attend are also truly missing out.
As I have mentioned many times, about a year after my son’s diagnosis with diabetes I joined the world of the Internet and found an amazing group of people in Jeff Hitchcock’s Children with Diabetes Parents online mailing list. In those days there was no Facebook or Twitter. I had no other support but this group of people that I would email with and they would reply. Over the years many of these online names have become some of my closest friends who have been there for me, been there with me, and kept me going when I wasn’t sure if I could do it.
This was (and is) a very diverse group. There were people with strong opinions, people with wide shoulders and people who were incredibly talented at putting their words to paper. Linda Kaniasty was one of those talented people who put the feelings of many parents into words. Her poem, A Mother’s Anthem has been a fixture on one of the pages of my website for years.
Recently it has been used to created a film. Sucscita Films took this poem and gave it a face for “Children with Diabetes UK.” and their national diabetes week. The poem was powerful. The video will reduce you to tears. Each time I watch it, more memories return and more tears flow.
A wonderful friend that I met thanks to the online parents list, Jen summed up our feelings best when she said “God, I’d forgotten about the bruises. She’s been pumping for so long that I’d forgotten about the bruised arms, and wondering what other parents thought of those bruises….This was harder to watch than the poem was to read years ago because its in their eyes. That thing that we keep just barely tucked away beneath the surface, so others don’t see our pain. the pain that we even fool ourselves into forgetting about, because we’re so good at being strong. But it takes something as simple as this to bring it right back up to the surface.”
I remember the bruises and thinking that people must believe I abuse him when I am actually fighting to keep him alive. I remember the fights to get him to eat because there was insulin in his system that had to be fed. I remember crying in the dark at night after my children were gone to sleep. I didn’t want them to see me but it hurt to know that no matter what I did, I would NEVER be able to “fix” this. I couldn’t “make it better”.
Thank you to Linda for this powerful poem and thank you to the people at Children with Diabetes UK for having the courage to put their pain to video and show the world what we all feel as mothers–as parents.
Diabetes has definitely changed me, and maybe in some small way, some of those changes are for the better.
I roll over wanting to just cuddle in and enjoy the warmth and coziness of our bed. As I roll, I glance at the clock and see that it is 4:30am. I had better get up and test my son. I don’t want to move. I am so very comfortable. That doesn’t matter. Out of bed I get. I stumble in the dark, trying not to disturb my fiance and not fall into any of the bedroom furniture.
Housecoat on, I head into my son’s room. Again I navigate in the dark to find the lamp and his testing supplies. I find his glucometer close to his XBox and prepare the device for a test. During the process I am praying for a good reading but the meter tells me otherwise. He is high. Crap! Okay, new cartridge and all, let’s just hope its the high fat lunch still messing with him. Correct and head back to my bed. I will be up again soon so I don’t worry too much.
Less than four hours later I am up. He has no school so he continues to sleep. I take my time and cater to my own needs before creeping into his bedroom to do a morning test. With some guilt, I head to his room about twenty minutes later. I go through the same routine and test his blood once again. He is still high…higher actually. Dang! Not happy.
I grab his pump but before I can input a correction I see “delivery stopped”. What the?????
How long has his pump been off for?? What happened? How did he sleep through the alarms? How did I sleep through the alarms? When the heck am I supposed to sleep??
I get the pump to restart and then began to figure out where the history is. My son can get his pump to do almost anything but Mom doesn’t use it as often any more so it takes me a bit longer. I find the history and about 2 minutes after I bolused the 4am correction. A blockage was detected and the pump shut down! More Mommy guilt. Did I really crash that fast last night? What is wrong with me? How did I miss this?
Thankfully the pump is working fine now, site is good and child is okay. He said he felt a little ill earlier this morning but now is up and being his usual nutty self.
I have been dragging myself out of bed at the wee hours for more years now than I can count. Lately I wake up wondering why? Why do I have to do this? Can we please have a break? Today reaffirmed why I have to do it but when am I supposed to sleep? How am I supposed to be chipper and ready to deal with the rest of my life when I am dragging my butt from broken rest?
I have been volunteering at my kids school for years now. One of the things that we do is parents prepare meals for the students. Today was one of those days.
I don’t think I have ever watched the show from start to finish. I never record shows anymore and I don’t know when I have had people go through so much trouble to find me a link to watch a TV show but here you have it…a bunch of firsts for me and a big Wow!
For those who never watch this show either, there is a TV show on called “Suppernanny“. She is a British lady who comes in and straightens out your family when you can’t do it on your own any more. In 41 minutes she fixes your marriage, makes all your children angels and teaches everyone how to get along with each other. This is why I don’t tend to watch it on a normal day. I am just not into shows that make life so black and white and pat. I had however heard that she would be going to help a family who had a child with Type 1 diabetes.
I don’t know if all diseases are like this, but those of us who live with Type 1 diabetes in our lives are harsh critics. I think it has to do with all of the misconceptions that we deal with on a regular basis. We are so used to defending and teaching that we are quick to judge when Type 1 diabetes is portrayed in the media. In our defence, a lot of media outlets do make horrific mistakes but still we are a tough crowd to get something past.
Supernanny had received a passing grade. No rave reviews now but most parents seemed to be impressed that she went in with a good general knowledge and was able to separate the disease from the child’s behavior. Now I was really curious! I had been traveling when it was originally aired but no fear because these things are always to be found online. I received three links to the show before I was given one that was usable outside of the US! Finally this morning I was able to sit down and watch it.
I was impressed. I still will not be watching the show but for a change the focus was on Type 1 diabetes. They didn’t fuss too much about the little boy who loved to pound on his sibling. They did focus on Mom’s fear that her son would die from Type 1 diabetes just has his grandfather had. They didn’t focus too much on the big sister who was sick and tired of cleaning up after two obnoxious little brothers. They did focus on the fight to get the child with Type 1 to eat all of his food. They showed blood glucose testing. They showed injections being injected. They showed carb counting and insulin calculations. They showed a child who refused to eat and threatened to vomit. They showed a child who could take 2 hours to finish a meal.
Now if Jo the Supernanny was also a super CDE then she would know to put the child on a different insulin regimen and no longer worry about feeding the insulin except in the case of lows. She would then be able to give the parents the power to say “If you don’t want to eat fine but you won’t be getting anything later” and mean it.
We are coming closer to 10 years since diagnosis with each passing day and some of what this family was dealing with I remember as if it was yesterday. Liam was 2 and this child was 5 but still both of them used food to control a situation that was well beyond their control. Liam would keep an entire meal in his cheek without swallowing. He would finally swallow only to vomit it all back up. He would take 2 hours to eat a pop tart. I would end up feeding him almost anything just so that he had the carbs to cover the insulin that was already in his system.
I will remain eternally grateful for the incredible support we had both in his diabetes clinic and through some wonderful people I met online. They finally got me to click in to the fact that if I didn’t inject him with the fast acting insulin he would be okay with minimal food. We were using NPH at the time and Humalog. As I learned how the insulins worked, I began to have power as a parent again. I could allow him to leave the table without touching his food and not worry about him passing out in 5 minutes. I was free to discipline him again and his doctor encouraged it! It was so liberating.
As you know if you have read my rantings before, I still get frustrated. I still get worried. I still have fears. I have to learn to move past them so that my soon to be teenaged son doesn’t continue to learn how to use those fears against me. We will be okay. He has a different way of taking care of himself but he is doing a good job. Together we will get through life and life with diabetes. One day he will be a confident, resourceful young man who just happens to have a life-threatening chronic illness.