January 12, 2016

Five Wild Onez

Is it strange that an 18 month old little girl would drink a 16 oz. bottle bottle of water and ask for another immediately?  The unquenchable thirst, a slow down in activity followed by a 1 hour unstoppable burst of energy.  Is this “normal”-we were both first time parents with limited exposure to young children – niece and nephews on the weekends or at family get togethers. Would we know what to do or notice things that parents are supposed to notice?  What if something happened? Our only point of reference was our pediatrician, whom we liked very much. He is very personable, answered all of the questions that we had thus far. So we called to make an appointment-my wife suspected SOMETHING. He told us to come in the next morning.

Our appointment was shorter than most, he squeezed us into the morning schedule and once the appointment was over he said that there was nothing that he could see immediately wrong and that he would call us later if anything came back from the tests.  The quiet demeanor of our pediatrician seemed to have a sense of urgency we had never heard from him and it had our immediate attention and honestly had me concerned. He said, “Evelyn’s Blood Glucose level is elevated and you need to go to Children’s National Hospital is DC, leave immediately, they know you are coming.  Check in and they will take care of you.”

The next thing we knew, we were the parents of a child diagnosed with Type I Diabetes.  I find it hard to capitalize the word “diabetes.” I try not to capitalize it because I feel that use the upper case “D” makes it more “dramatic” and draws WAY TOO MUCH attention to it than it really deserves.

Since the whirlwind of classes and doctors visits that first year-we have developed a strong grasp on diabetes care as parents. Our level of understanding diabetes as it applies to Evelyn’s care has definitely translated to how she has chosen to care for herself-and we couldn’t be more proud of that.  She handles it all in a “matter of fact” sort of way, and explains what she is doing to anyone that asks-and a lot of people have. We chose not to hide Evelyn’s diabetes, but to embrace it and leave it out in the open.  With needles, it was a little more challenging for us and people would give strange looks or give the face of pity.  They were less likely to inquire as to what was going on with this medication; but when they did engage us, they “couldn’t believe that diabetes had taken hold of such a beautiful and vibrant young child.

Once we started using the pen and now as we use the pump, giving a dose of insulin is as quick as a simple math problem in your head and checking a text message on your phone. It has gotten much easier as Evelyn is able to tell us how she feels, when she feels a low coming on due to activity, when she feels a cold coming on-all the things we used to have to guess at when she was barely able to walk and had been newly diagnosed with T1D.

Raising money for the American Diabetes Association is something that we have been doing as a way of giving back.  We would meet so many people at the many fundraisers and meet-ups we had been attending that it was hard to keep the names straight! The people that we had met gave us a lot of encouragement and reassured us that what we were doing was the right approach-they were so comforting to us as people new to parenting and new to diabetes care. As we had become more comfortable with what we were doing, we offered our “lessons learned” to other young parents as they started onto a path with their young children since we had already walked that path what seemed like ages ago.  We have answered emails, Tweets and Facebook posts hoping to provide a bit of comfort and encouragement closing with the comment that “at times, it may seem difficult, but it’s not impossible”.

2011 ADA Youth Ambassador and January 2012 Diabetes Forecast Magazine Cover
2011 Youth Ambassador
Fast forward to 2011, Evelyn was 10 years old and Mary Merritt, the Director of the American Diabetes Association Washington DC Metro Area office asked us if Evelyn would like to be a Youth Ambassador. We asked about the duties that she would be expected to carry out as a Youth Ambassador and agreed to them.  Evelyn went to a few luncheons and meet-ups ramping up to the Step Out Walk in October. She gave a speech as a part of the opening ceremony of that Step Out Walk and was excited to be up front to cut the starting ribbon with a huge red scissors!
January 2012 Diabetes Forecast Magazine Cover
At the end of her reign as the 2011 Youth Ambassador, we went to the ADA office and was sure to thank everyone for their kindness and help over the past year.  As we said our last few goodbyes, Mary asked if we would like to have some pictures of Evelyn taken for an issue of Diabetes Forecast Magazine.  We easily agreed and thanked them for thinking of us. She said that we would be getting a call from a photographer and that he would set it to take place at our home. She tossed out a little comment as we walked out the office door, “Evelyn, you’ve had quite the year, what could you ever do to top it?!”  Evelyn said, “Just you wait and see!”  We didn’t know the adventure we was about to embark on, but it turned out pretty spectacular!
Sure enough, the photographer called to gather some information about what he would like to do and set the appointment.we were all very anxious and couldn’t believe that they had set up everything and that we really didn’t have to do anything to help out-we just had to sit back and let this happen.
The photographer and his assistant showed up with a few changes of clothes and some props that they used during the shoot. This was too cool-a PHOTO SHOOT IN OUR HOME? Evelyn had a huge smile as they set up the white backdrop in our family room and started to unpack the clothing and prop items. They photo shoot lasted about 90 minutes or so when he asked if they could take the shoot to the playground in our community. We eagerly obliged, but felt sort of weird when the neighborhood kids started to gather behind the photographer as he snapped pictures of Evelyn as she acted out checking her BG and jumping on her pogo stick with our dog running through the shot on demand. As they left, the assistant asked the photographer out loud if we had been told that Evelyn was going to put on the cover of the January 2012 issue of the magazine.  We were shocked, stunned and amazed at what we had just heard!  We couldn’t wait to see the cover!  I called and asked if there was any way to get a few copies of the magazine to give to family and friends. They sent us an entire case of her issue, which is great because we’ve handed a few of them out to other people that we’ve met that have also been on the cover.
Diabetes Forecast Cover Meet-ups
It started with a local venue that was advertising for a Bret Michaels concert. We contacted Kelly Rawlings to see if she had any idea how to make contact with Bret Michaels people to try and help us arrange a meet and greet.  We were willing to meet before, after, during the concert-any way possible to try and swap Evelyn’s autographed magazine for an autograph in a copy of their Diabetes Forecast magazine.  After emails and Tweets to Bret and other people that were in a position to help us-it came right down to the wire with a generous donation of their meet & greet passes. There were also two passes waiting for us at the will call table-courtesy of Bret Michael’s people. We spent quite a bit of time talking with him after the concert, considering the time of night.  It was a terrific first time that set our expectations high.  We weren’t disappointed!
We have met 13 other people that were also on a cover  (Bret Michaels, Crystal Bowersox, Sam Fuld, Miguel Paludo,  Elizabeth Profit, Dr. Nat Strand, Elliott Yamin, Brandon Morrow, Erin Spineto, Ryan Reed, Nick Jonas and Kyle Love.  (Sean Busby, Sierra Sandison, Stephen Wallem, Kris Freeman and Carling Nolan have responded positively to our Tweets, but our schedules need to mesh for it to happen-Supreme Court Justice Sonia Sotomayor’s office sent a polite decline letter because of her book tour engagements; but we’ll keep trying.) The meetings that we’ve been able to pull off have taken place in various places, in different States on the East and West Coast at different times. At every meeting we’ve asked them how they deal with diabetes in their lives, when were they diagnosed, how they/their parents dealt with the news, and how it affected them growing up, if they told us they had discovered when they were young.  Everyone that we had met was engaging and was very approachable.  We were very surprised how accommodating each one of them were-not because we didn’t think they were nice people, but because we were complete strangers.  They didn’t know us at all-never met us before this moment-but they were instantly willing to talk with us-people with a story much like their own when it came to living with Type I diabetes. So that has been what we have been up to since the cover of Diabetes Forecast.  A huge thank you to Kelly Rawlings (the editor of Diabetes Forecast magazine), Bret Michaels Crystal Bowersox, Sam Fuld, Miguel Paludo,  Elizabeth Profit, Dr. Nat Strand, Elliott Yamin, Brandon Morrow, Erin Spineto, Ryan Reed, Nick Jonas and Kyle Love.  Sean Busby (Feb 2016) Stephen Wallem, Sierra Sandison and Carling Nolan-we will see them VERY SOON-we hope!)
We thank you all for talking with us and sharing your story-and thank you for becoming part of our story.