Every year parents are told that their children may have a chronic disease like diabetes and the history of that family changes dramatically. I have, in the past, worked with families with children who have a variety of chronic diseases and was often taken aback by the platitudes offered to parents and siblings. The truth of the matter is that learning that a child who you adore has a disease that could potentially cut the length of his or her life, cause blindness, kidney failure and possibly learning and emotional disorders can not be passed off. I often wonder who writes things like "having diabetes should not prevent your child from anything", without adding that managing a child's diabetes is a family affair and that a child will do better on a daily basis if the diabetes is managed properly. Once again, this is easy to say and more difficult to do on some days or weeks.
Our first thought to share with you is that guilt will get you nowhere but spinning your wheels. One of the early thoughts that occurs to parents is " What did I do?" To tell the truth, you did nothing. If we knew why your child developed diabetes, we could begin to really cure the disease or prevent it. How do you work on these thoughts? One suggestion is to learn about the Diabetes Prevention Trial 1 and the DAISY study. Ask your child's doctor how to enroll your other children in a study because studying siblings is a good way to explore ways of preventing diabetes. Enrolling your children in a study may not help your family, but it could help others in the future and you will be doing something concrete about a situation that can make you feel overwhelmed on some days.
If you get discouraged, know that you are not alone. We all have times of feeling overwhelmed. If the feelings do not melt away in a reasonable amount of time, tell someone and get help, not just for your emotions, but also to help you with the family. Sometimes, we look so capable, that others don't see that we are all façade and that inside we are crumbling. Family, friends, and even spouses can help lighten your load and give you time to enjoy.
These are the first two paragraphs of an article we wrote for you in Jan, 2001 about having a child newly diagnosed with diabetes. Last month we received an e-mail from the mother of a very young child who had been diagnosed with diabetes and she told of how she had come up with the "better mousetrap" for her child's insulin pump. We rarely tell you about products that come our way, but these two young women. Julie and Dawn took the initiative to help their children in a positive way and regain control of a situation that can seem daunting. Please read on and we hope that you will raise a glass of tea to toast these two fine women.
Julie and Dawn's words: On June 19th of 2000 our then one of their 2-1/2 year old daughter was diagnosed with Juvenile Diabetes. All the research we did on what would help her gain better control of her diabetes lead her mom to the pump. So on April 10th of 2001 with the support and guidance of the doctor and nurse Nikki Tyler was put on the insulin pump.
Adjusting to being on the pump for us was like Nikki had been diagnosed all over again. We were learning everything about the pump, counting carbs, changing infusion sites and watching our beautiful little girl wear this insulin pump that was now her life support.
Since Nikki is only 3 and very few of her clothes had belts on them we soon found that the options available to hold her pump were limited. We tried the harness that we were given but just seeing her wear this item made me cry. Then we tried clipping it to her pants but it would fall off. So in desperation I finally took some of Nikki's favorite t-shirts to a friend's mother and asked her if she could sew some pockets on the back for me. Once Nikki started to wear the new t-shirts with the pocket on the back I felt like we had turned a corner. All of the sudden the dresses that she loves to wear were pulled back out of the closest. Where to put the pump was no longer a problem. By wearing the t-shirts Nikki now has the versatility of wearing anything she wants. Also the pump is away from her busy hands. When I need to bolus her I simply go down the back of her shirt and pull the pump out. Most people now don't even know that Nikki has a pump on unless they are looking for it.
Now that Nikki was progressing so well on the pump my best friend and I started thinking about other alternatives. For example what was I going to do when she went swimming and wanted to keep her suit on? That's where the pump pak comes in. Everything that we saw on the market just did not appear to be kid oriented. My best friend and I thought why is that? Why can't our kids have items that they would actually be happy to wear? Why can't there be a site where parents and children can go and look at their options for pump wear together? That's when we came up with the idea that they could. Our children deserve to have a childhood. Their lives have already been interrupted by this horrible illness. The very least we could do is offer them some fun, colorful and creative ways to wear the pump. That's how www.pumpwearinc.com got started. We kind of closed our eyes and charged ahead. We surveyed our children to see what kind of designs they would like to have. Nikki likes flowers, Dawn's daughters like hearts, and my boys like skateboards. We hired someone to make up the designs we wanted, had them created and then found a manufacturer.
Dawn's also very talented in coming up with ideas, and her computer skills well exceed mine.
As a mom going through the pump experience I found that there was a very emotional aspect. It's hard to watch someone you love deal with this illness and you want people to realize that this illness is more than just a finger prick and life goes on. Our children have been dealt a life sentence. That's why we also decided that we wanted a support pin that was something that we would be proud to wear. We designed a special Juvenile Diabetes pin that we feel truly represents the thousands of finger pricks our children have to endure just to live.
Nikki's only 3 so we know that there will be a lot of other items that she will need as she gets older. We are hoping that soon we will have a cure and we won't need www.pumpwearinc.com but until then Pump Wear Inc. is committed to providing what our kids want and need while letting "Kids be Kids". That's what we are all about.
Thank you, Julie and Dawn, for sharing this important information and formation of this website with us.
BSP
