Dear family, friends and collegues,
Welcome to my personal JDRF Walk to Cure Diabetes fundraising page! I am writing this letter to ask for your support for my 3 year old son, Willem, and the millions of other people living with type 1 diabetes.
This update on Willem actually comes very late as we don't have much time until the walk. Having to sit and dwell on Willem's disease, and all the details, in order to write this is very emoionally taxing for me, so I have procrastonated too long. We've had a lot go on in our diabetes world this year.
Willem has had diabetes now for a year and 7 months. We had our first "diabetes anniversary" or "D Day." February 2 every year now will be a day that we celebrate and grieve. For Rob and I, February 2, 2012 was one of the worst days of our lives. It was a coming to realization that our son has a disease that we will never be able to fix, will never go away, and takes away a lot of the "normal" in our lives. More importantly though, we celebrate that Willem is alive. When he was finally diagnosed, he was so ill. His blood sugar was tapping out the meters; above 600, so the meters only read, "HI." His body was absolutely shutting down when he was admitted to the ICU in Diabetic Ketoacidosis. Obvioulsy, it couldv'e gone much worse, had I not pushed the pediatrician to see us again and to check his blood glucose and urine. So, this year and every year from now, we will celebrate Willem's life and celebrate the strength, devotion and perserverence that all of us, Willem, Rob, myself, Weston and Walker have as we all live with this disease everyday.
Early this year, we also attended the JDRF retreat at the Millenium Hotel in downtown St. Louis. What a cool event! The five of us stayed at the hotel for the weekend. Rob, Willem and I atttended a lot of discussions and speeches regarding some of the technological advances. There were a lot of motivational speakers, one even being an olympic snowboarder with type 1. Weston and Walker were able to rotate between a bunch of different fun activities they had set up for the kids, all ran by volunteers and student nurses, (Willem was too young at the time.) We had buffet dinner, a kids movie on the big screen with popcorn and snacks, and buffet breakfast-----all of which the carbohydrates were included and posted!! The whole family had such a great time, learned a lot, and we got to spend it amongst so many other kids with type 1 diabetes and their families. What a sense of normalcy for a weekend!
We also decided, back in the summer, to change Willem’s endocrinologist. We had been seeing the same one since diagnosis. She was a very good doctor. However, we felt like something was missing. Through complete coincidence, I had been referred to a particular endocrinologist at St. Louis Children’s Hospital by two different people. So, I decided to follow the signs, and had Willem’s first appointment there in July. It didn’t take too long at that appointment before I was convinced that we needed this change. The doctor, nurse and nutritionist we met with in that two hour appointment were so “on their game.” Obviously, Children’s Hospital is at the cutting edge of new research and advancement in the understanding of the disease and its treatment. They voiced their concern about the entire family, as a whole, dealing with this. That was a first. They also have so many resources. They have a whole big program for parents when deciding to put a child on an insulin pump. There are chances to be involved in research programs. They employ an amazing diabetes educator who is such an advocate for these kids, too. She even schedules appointments with kids’ schools and educators and school nurses to educate them on type 1 diabetes and how to care for the individual child she is there for! They have a resource center at the hospital where you can check out books. They also have a Diabetes Support Group that meets a few times a year with different speakers and topics, which I was so excited to actually attend my first one last night! Even though we are a very normal busy family of five, it really helps to meet with and talk with other families going through a lot of the same things and who may be at different points with diabetes and development. I met some really nice people there, had great conversation, and met another endocrinologist from that group who seems awesome. I left the support group last night feeling very empowered to continue to help Willem through life with diabetes and to teach him how to care for himself. I think this change in endocrinologists is going to really help us a lot to manage Willem’s blood sugars better and many other things down the road.
As time goes on, we are getting more comfortable with the care of type 1 diabetes. As anyone who understands this disease will get, this is a forever constant changing process. Just when you feel like, “Oh we got it, this is working……“ it changes. Everything in life can throw blood sugars for a loop. Growth spurts, illness, exercise, different foods, hormones, illness, etc. It all makes a difference in how the body reacts to insulin and how the body metabolizes glucose and how much glucose the body makes on its own. So, we have learned, there are no “bad” or “good” numbers. We have learned that we kind of have to roll with the punches. Willem still has really wacky blood sugars a lot of the time. Sometimes he can run in the 300-400’s, other times he is dropping to a very scary low in the 30’s. For those who do not know, a child without diabetes runs between 60-120, depending if they have eaten recently or not. So, highs and lows come with different symptoms. When Willem is low, he can feel very tired, sweaty, extreme hunger pains that make him cry with tummy ache, and sometimes he seems to just really be “out of it.” When he is high, he is very thirsty, tired, complains of horrible headaches and will completely soak through even night diapers to the point of drenching himself and his sheets. Thankfully, as Willem gets older, he is sometimes able to voice his symptoms and we catch whatever is going on. And then, other times, he may not even understand why he feels bad, we just catch it---thankfully! He does very well getting his blood sugar. He in fact, at the age of 2, learned how to take his own blood sugar. His brothers at 5 and 7 years old can also do it. Everybody takes turns reading the meter. It truly is a family affair. He also does so well getting four, sometimes more, shots a day. He of course has said, “mom, I wish I didn’t have to get my blood sugar.” Or, “I hate my shots!” But I will say, Willem knows that at any point in time, he never starts eating without asking if he’s gotten his blood sugar. He already knows these are things we just have to do in order to function.
Of course, there are a lot of concerns that come with type 1 diabetes. Obviously, the first being that his blood sugars are within range so he is not to pass out, have a seizure, cause long term effects on the growth of his brain or cause any of the other things that can come from having diabetes for a long time such as neuropathy, retinopathy, kidney disease and many other horrible things. But, there are so many other things aside from normal concerns about your kids. Sending him to school will be a huge adjustment for me to relinquish that control to Willem, his teachers and school nurse. Everyone will need to be educated on how to figure out carb counts, give his shots, take blood sugars, watch for signs of lows and know how to give an emergency shot of glucagon---God forbid, should he ever need it. I worry about peer pressure with eating. Even now at three years old, he is having to learn so much self control. At parties when people are snacking here and snacking there, I have to teach him that even though everyone else is, it is not what is good for his body. It’s not really good for anyone’s body, but eating is something that the majority of the population takes such for granted. He has to live, most of the time, very scheduled and structured, or his body suffers horrible consequences. We also have to watch his sites where he receives shots, as even after only a year and half, he has started to develop a lot of scar tissue. When a shot of insulin goes into scar tissue the insulin is not absorbed normally, so his blood sugars can be off. His fingers all have permanent little dots all over the tips from the thousands and thousands of finger pokes he gets. I’m pretty sure his fingers are numb at this point. And then, there are other concerns that I have about the possibility of one of my other sons getting diagnosed. It seems to be very back and forth on the subject whether chances are slim to none or chances are larger for one of them to also have the DNA that may predispose their bodies to it.
So, while there has been so many diabetes related things that go on in our day to day, we are a busy, normal family of five. Willem, Walker and Weston are the best of friends. Willem loves to play with his brothers and learn from them. He is incredibly smart and so loving. This kid makes me laugh and warms my heart everyday. He does not let his diabetes make him different from his brothers or anyone else. He plays sports, loves baseball, wrestles, and runs. He is an awesome eater, (lucky me)! He loves his mom and dad so much, and he never forgets to tell us that---all day. We talk to him all the time about the people out there who have type 1 diabetes and do incredible things, like, Sam Fuld---MLB, Jay Cutler---NFL, Sean Busby—pro snowboarder, Sam Talbot—pro chef and a big athlete, Mary Tyler Moore—actress, and many others in the NBA, Olympic swimmers, rock stars, etc. etc. One of my biggest priorities as his mother is to teach him and empower him to do everything and anything he loves. He is just as capable as anyone else, the diabetes will not slow him or us down, it is just something that we take along for the ride. As his advocate, I will continue to do everything I can to learn as much as possible to help him control his blood sugars and live happily and healthily with type 1 diabetes.
I hope to really get involved in the diabetes world to help spread the word and educate everyone on this disease. Millions of people live with this disease, yet there are so many people who don’t understand it. It is not type 2, it is very different. It was not a lifestyle that caused diabetes. It is an autoimmune disorder, where his body attacked its own pancreas and killed off the cells that make insulin. I am sure, that if you think you don’t know someone with type 1, you actually do and just don’t know they have it. It is so prevalent in our world. JDRF is working so hard towards better treatments and a cure. I am so hopeful someday in Willem’s lifetime, there will be a cure. It is my biggest wish-----so secrets out, you know why I blow out my candles on my birthday every year. Please contribute in anyway you can to help JDRF and their research. It means so much to anyone affected by diabetes. I hope that our regular team of support will please sign up to walk with us at the walk. Donations are obviously always appreciated if possible. And even if not, please do not pass up the chance to buy a JDRF sneaker at businesses when they offer. The contribution really goes a long way to help Willem and all the other people living with this disease. Thanks so much for reading our update. I hope to see you at the walk!
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