Jessica decided she wanted a Dexcom. Although I was not crazy about the idea (the kid is going to get a hernia with all the crap she carries on her small body!), it is her disease and I told her it was her decision. She is only 8, but from the time she was diagnosed I have tried to let it be her disease. I have told her that I will always be part of Team Jessica, but she is the most important member of the team.
She amazes me and I am in awe of her. She also makes me feel like a wuss. I may have dissected cadavers, but I truly don't know if I could do what she does. She is such a champ with the site changes with their scary spring loaded sound. And, now to add to that, she is choosing to have one more piece of equipment injected into her body. I guess if you are worried you will die in your sleep having things attached and inside you is the better option. It breaks my heart that she, at 8 years old, fears dying in her sleep, but I am also glad she can voice this. It also makes me feel I have failed her. I have been walking around in a sleep deprived daze since she was diagnosed due to checking on her, but yet she still has this fear. It is just one more reminder that I can't carry this burden for her and I can't make it go away. It is just one more reminder of how angry I am this was dealt to my little girl, and to so many others.
Her healthcare team thinks the Dexcom is the answer, and I think they are probably right. But, seriously the kid has the lowest BMI of any kid I know, so we just don't have a lot of real estate to work with! Anyone who has or cares for someone with T1 can imagine what real estate we are having to use, and it has changed what position she sleeps in and how she sits. But, she has not complained once. And, for the first time in a long time she isn't fighting us about going to bed. Hmmm...
The compromise her amazing provider came up with is that Jess will wear the transmitter at night and on weekends, but not carry it to school. For those of you that haven't seen it---the thing is humungous! I mean really...we have iPhones that do everything imaginable and they are barely bigger than it! I know, I know...technology takes time....a smaller one will come soon. But, when you have this little girl with all these gadgets attached you can't help but wish it would come now. And, there are babies waiting, and toddlers waiting. But I digress...
So, it came in the mail today (she had been using my husbands up until now) and she is thrilled. She wishes it came in purple, but she is thrilled. I am thrilled she has an absolutely amazing provider who listens to her and advocates for her. It was Jessica's decision. And, although others may disagree I think it should have been.
I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.
And, of course, it is by no means meant to offer medical advice.
Wednesday, April 20, 2011
A recent post on another blog really sent my wheels turning, and some of the comments I found down right disturbing. Do caretakers of T1's or any disease for that matter deserve to air their feelings? I am a Family Doc. I was trained, and I believe that illness affects not only the patient, but the family, and the community at large. Everyone's experience is unique and deserves to be recognized. Illness is not a competition. The caretaker does not know what it feels like to have the chronic disease, but the person with the chronic disease doesn't know what it feels like to be the caretaker either. One can say that it is harder to have cancer or diabetes or a number of illnesses, but that doesn't mean that it is not hard to love someone with them. How do we measure pain and suffering? To experience pain is to know it, but who is anyone to judge the pain that someone else is feeling? No, I thankfully don't know what it feels like to be high or low, but I do know what it feels like to worry my daughter or husband will die in their sleep of hypoglycemia. How can we put a label on pain and suffering? How is a caretaker "whining" anymore than a person with a chronic disease is "whining?" And, doesn't everyone deserve the right to whine once in awhile? Clearly it is a healthier coping mechanism than running away or drinking to deal with the pain. The parent who has lost a child to cancer doesn't know what it feels like to have or die of cancer, but does that mean they didn't experience as much pain? This world is too full of judgement. If people actually focused their energy on supporting each other instead of competing and judging each other think about what we could accomplish. Pain should not be judged or measured. It just exists.