Profound Yet Amazing…..

Profound Yet Amazing…..

Grace is 8. She turned 8 last November. Who could have imagined that the normalcy that existed on her 8th birthday would change in such a profound way in just 2 months.

On January 17, 2012, after her Mom made a doctor’s appointment to discuss Grace’s unexpected weight loss, she was diagnosed with Type 1 Diabetes. There were other subtle signs that appeared in the weeks prior to the diagnosis and now all the pieces started to make sense. The thirst, the fatigue, moodiness and finally the weigh loss were all symptoms of diabetes. Grace and her family were still blindsided by the diagnosis. She was immediately admitted to the A.I. Dupont Hospital for Children. When she got to the Emergency Room she was immediately admitted in critical condition. After five days of a learning curve that seemed (and still seems) to never end, Grace was discharged to home with a new life as a Diabetic. The changes that took place that week….Profound.

Grace returned to school on January 23, less than a week after her diagnosis. It was scary for her. Fortunately, (or unfortunately) there were other students at her school who also have T1D, so the school nurse was prepared and very supportive. But her family was still in shock. While her Mom went through the motions of counting carbs, and Grace endured the grueling process of checking her blood sugar and injecting herself with Insulin syringes, they still weren’t prepared for the constant fluctuations in her blood sugar levels, and the way it affected her – or didn’t affect her. Those first few weeks at home…..Profound.

At her first follow-up appointment with her Endocrinology team, the doctor wanted to know if Grace had any questions. She didn’t have questions about her insulin, needles, carbs…..the only thing she wanted to know is when she could start swimming again? Laying around and being sick was just not her style! Amazing.

On January 27th, just 10 days after her diagnosis, Grace returned to her regular swim practice schedule. Uncertain of how her blood sugar would react to such a vigorous physical workout, Grace’s Mom and her coaches kept a very close eye on her and checked her blood sugar before during and after practice. It was tough at first because Grace was experiencing “lows” during her hour long practice, but after a few weeks and lots of conversations with her Diabetes team, Grace was able to figure out what type of uncovered snacks would get her through a vigorous hour long practice (usually a cereal bar or a PB on apple with a 1/2 cup of milk).

Grace excelled, and placed in every race through the end of season. It didn’t seem like she was sick at all. Amazing.

Then, as if Grace wasn’t experiencing enough complexity, in March 2012, Grace was diagnosed with Celiac Disease which meant a gluten-free lifestyle in addition to managing all of the T1D stuff. This, of course, meant a re-evaluation of all her meals and snacks, what was in the pantry, what restaurants we could go to, and what extended family dinners looked like. Most of the snacks that were determined to get her through her swim practices were now off-limits because they weren’t gluten free…….It was like starting all over again. Profound.

While all of this was going on, a family friend reached out to the Bret Michaels organization to tell them about Grace and everything she was going through. In contacting them, her hope was to get an autograph picture and maybe some words of encouragement from Bret Michaels…..but no, no, no……Mr. Michaels didn’t send her an autographed picture. Instead, her very generously offered to let Grace pick out a diabetes camp (sleepover) to go to during the 2012 summer and he would sponsor her for the whole thing. Grace was thrilled. And excited. And relieved…..because after her TD1 diagnosis, going to a sleepover camp was not something she imagined she could do!!!! Amazing!

She attending Camp Setabaid in Central Pennsylvaia for a week in June 2012. learned so much more about her diabetes then she ever would have learned at home. And the value of having Grace be with this unbelievable group of kids that she could relate so closely to…….The camp experience definitely boosted Grace’s confidence and made her more committed to controlling her diabetes and keeping up her extremely active lifestyle. Amazing!

During the short break between winter & summer swim team practices, Grace began training for her first youth triathlon. She ran her first event on June 9th and finished 38th out of 90 participants (aged 8-14). In July she participated in her second youth triathlon and placed 3rd in her age group. And in August she ran her 3rd triathlon, and again placed 3rd in her age group. (Grace was the only athlete that had skittles and glucose tabs in her transition area!!!) And then she finished in 1st place at League Championships for 8 & under backstroke. Amazing!

Grace starts 3rd grade in September. She will also be starting on her insulin pump in September. Although her Endocrinology team told her it would be at least a year before she could start with an insulin pump, Grace learned about the pump at Diabetes Camp, she got to wear a pump for 24 hours (with saline running through it) when she was at camp and several of her friends with TD1 convinced her that there was nothing to be afraid of. Persistence pays…..because the Endocrinology team did finally agree that she was ready and she will be on the pump less than 8 months from her diagnosis. (She tackled the UPS driver when her pump arrived last week!)

WOW – what a crazy few months – profound & amazing!

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