Islets of Hope About Elizabeth Rose
Lahle Wolfe founded IOH after her daughter Elizabeth was diagnosed at age four with type 1 diabetes. Wolfe has played an active role for more than ten years as an advocate for women with poly cystic ovarian syndrome (PCOS), eating disorders, and those with diabetes. She has extensive experience in health-related research reporting and support networking and knew from past experience that an effective way to help her own daughter was to reach out to others and create a versatile online community that offered up-to-date diabetes headline information and a place for others to exchange information and peer support.
Lahle has type 2 diabetes, polycystic ovarian syndrome (PCOS) as well as Hashimoto’s thyroiditis. The inspiring story of her personal search for positive solutions to her health problems culminates with dramatic lifestyle changes resulting in the loss of more than 135 pounds, A1c tests averaging 4.5, and the unexpected triumph over eighteen years of infertility. The story of how she took control of her health has appeared in the Washington Post, Woman’s Day magazine, and other publications.
Diabetes can often raise legal issues in addition to health issues, particularly concerning a health insurer’s responsibilities. If you are the parent of a diabetic child, you are likely to face another set of challenges concerning the care your child needs and receives while they are in school. Visit our “ask a lawyer” page to submit questions that a lawyer might be in the best position to answer. We’ll submit the questions to a lawyer, and post the answers.
If you live in California and need legal assistance in getting your diabetes supplies or care covered, or face discrimination at school or the workplace The Ehrlich Law Firm may be able to help. Mr. Ehrlich is the parent of a child with type 1 diabetes and understands first-hand the unique legal and personal challenges of diabetes that you may be facing
My pregnancy had been fairly routine, I took my vitamins, did not drink or smoke, and did everything I was supposed to do – including keeping my blood sugar on target and gaining only 26 lbs. Elizabeth’s delivery was uncomplicated and I breast fed her for the first two years of her life. She was the one I would not have to worry about. Yet just prior to her 3rd birthday I noticed a yellowish brown darkening in her groin and armpit areas and she was becoming hirsute. I was panicked because this same thing happened to me before my onset of type 2 diabetes so I took her to the pediatrician who assured me that all was well. Barely a year later was she back at the pediatrician’s office with symptoms of weight loss, headache, insatiable hunger and thirst, and frequent urination that began after a 3-week bout with a virus. I knew it was diabetes before I heard the diagnosis. The doctor would not tell me Elizabeth’s blood sugars she just said “your daughter is diabetic. You need to take her to the emergency room to be admitted.” When I said I would have to stop and pick up things (like my own medications) because she would “probably” have to stay a couple days in the hospital the nurse put her hand on mine and said “You don’t understand. You need to go and you need to go now.”
I was racing for the emergency room when Elizabeth slipped into unconsciousness from diabetic ketoacidosis (DKA). Her blood sugars upon arrival were over 1000 mg/dL. When her father got the news he hopped on a plane and flew 2,800 miles to be there for her barely 12 hours after her diagnosis. Elizabeth, in her delirious state kept asking for her daddy over and over and when she woke during the night and saw him there the smile on her face gave me hope that she would somehow be the same little girl she was prior to becoming diabetic.
After a 3-day hospital stay she was back home where I would spend every waking hour (with diabetes that is pretty much all the time) trying to keep her safe and put some sense of normalcy back into our lives. It was the hardest time our family ever faced. Without any warning diabetes seemed to have stolen childhood away from Elizabeth, as well as her siblings. And from me, diabetes took away my confidence that my children would always be fine.
Only two weeks into shot therapy it became apparent that Elizabeth was allergic to something in her routine. After each injection she got hives which worsened over time and she developed asthmatic symptoms. When I asked her endocrinologist what happens if she is allergic to insulin, she gravely replied “we don’t want to go there just yet.” Finally, it was determined that Elizabeth was probably allergic to buffering agents in long-acting insulin but she could take regular insulin! I was elated we were not dealing with an insulin allergy. But without a long-acting insulin Elizabeth was now getting far too many shots per day and her sugars were usually sky-high. Yet even this bit of bad luck turned into a blessing because she was put on an insulin pump – a device that gave her back control over eating, playing, and sleeping. She began to smile again and I no longer felt like the enemy chasing her around the house 5 or 6 times a day trying to stick her with needles. We were lucky; only one month had passed since she was diagnosed and now she was on a pump.
In the crisis moments that come with initial diagnosis all I could do was worry and fear and chant “why her?” Looking back now, however, I also remember how so many fabulous medical professionals really rallied for her. Animas donated an emergency pump, my endocrinologist called me almost every hour round the clock for two days checking on Elizabeth’s allergic reactions and even her dietitian gave us daily personal attention for almost two months. And my other children rose to the occasion being almost saintly patient as their needs often went neglected so that Elizabeth’s could be met. Strangely absent during that time were bewildered friends who were not sure what to do, how to help or handle with my sorrow, so they just backed off and all but vanished from our lives.
Since Elizabeth was diagnosed, I have faced what all parents of children with diabetes face or will face; hospitalizations, endless doctor appointments, seizures, worrisome highs, terrifying lows, school systems that would rather ignore my child than help, and a life now completely governed by sugar checks and activities determined by “ranges.” But the worst part, even above not having slept more than a few hours per night since January 15, 2004, is the guilt. I am type 2, with polycystic ovarian syndrome, and also Hashimoto’s Thyroiditis – all things associated with diabetes. I cannot shake the horrible feeling that I “did” this to her.
But life does go on after diagnosis and it does get better. If you are still in those stressful, perpetual motion days of “newly diagnosed” please know that your child will probably adjust faster and better than you will. They won’t always run from you when they see a syringe, or cry during finger sticks. One day they won’t even remember a time without diabetes and everything “abnormal” about living with diabetes will somehow become “normal.” I am so proud of my daughter; how brave she is, how stoic. She often inspires me out of depression and guilt and into action and she is the reason that Islets of Hope was created.
Some things don’t change after a diagnosis of diabetes; how much you love your child, how precious a gift they are. And you will still find yourself standing over their bed at night watching them slumber with new-parent awe and such love as to sometimes still bring tears. Only now, it will be at 2 a.m. because it is time for a sugar check and you will also wonder if it is truly sleep, or an insulin coma. But just when I am tempted to feel sorry for myself, for my daughter, I remember something else too. In the PICU where Elizabeth stayed for three days there were other children. During our brief stay one family went home without their child and I heard nurses whispering in the hall one night that two other children would never be going home either.
Elizabeth came home.
Maybe not to an ideal world, but even our prediabetes life wasn’t really all that perfect. In fact, diabetes may have darkened a part of my world but in doing so provided contrast to the brights which now seem even more brilliant and wonderful than ever before. My daughter is here, in my life, chasing butterflies, making pudding hand prints on my walls, and pointing out clouds that look like bears with crowns on their heads.
Now, I look at all of my children as miracles, in fact, refer to them as my Miracle Four. I appreciate the little things as much as the big things. While diabetes certainly is no gift, it came surrounded by gifts of grace and personal growth and the ability to see beauty in far more things than I ever imagined possible. As a result, I believe in things far greater and more fantastic than diabetes. I choose to feed on the uplifting feelings of love and gratitude that Elizabeth is sprawled out on the floor next to me this very moment coloring me pictures with her Crayolas. And I will thank God with every bolus and sugar check and challenge. Not for those things, but for the gift that even diabetes could not diminish – the gift that I was given – when Elizabeth came home.
"Be not afraid of life. Believe that life is worth living, and your belief will help create the fact." William James, American philosopher and psychologist
Page Updated 04/25/2007