The RIDE of our lives..............

January 29, 2012

I RIDE WITH DIABETES.   A simple statement that is on the back of Allison’s Red Rider Jersey that she has been given for the upcoming Chesapeake Bay Tour de Cure bike ride in May. On Friday we visited one of sponsor companies, Easton Cycle and Sport, and they helped Allison get all “geared” up for the ride. I think getting a new bike has inspired her and she is even more excited than ever. As I heard my daughter talking to Ryan Hickey at Easton Cycle and Sport (in picture below with Allison and her new bike) about training for the ride her excitement built and I realized that this RIDE in May would mean a lot to her – friends, family and those like Ryan Hickey of Easton Cycle and Sport (and the many other great sponsors) are taking their time to support Allison and all those with this disease.

As the weekend progressed I kept thinking about the statement: I RIDE WITH DIABETES. Its purpose is to denote that those that wear it are diabetics and they are special and the reason we all ride our bikes in support of one of the many Tour de Cure’s across the country. But as I thought about it more that statement, I RIDE WITH DIABETES, started to take on many more meanings to me.  We all RIDE with something in our lives, but most of us can get rid of our unwanted riders – my daughter however has to have a two person bike with her until there is a cure – probably not the most positive spin on the statement I RIDE WITH DIABETES.  However, it also means that all those that surround a diabetic also RIDE with it, helping them along the way.

As the weekend continued the RIDE of Allison’s life moved forward and it had nothing to do with diabetes. She got her first basket at a basketball game (it was an amazing moment to all those in the crowd – I wish I had videotaped it – it was a once in a lifetime moment!)  Allison, along with her brothers Cub Scout Den ran into the Chesapeake Bay for Special Olympics (January in the Bay is COLD), she played with her friends, she attended church, she watched a movie and she played with her siblings. All these things occurred even with that unwanted RIDER always with her.

Our family RIDES along with her. Her dad and I take on the extra RIDER for her as much as we can - remembering to test her, counting carbs and measuring insulin – we do what we can to give her some freedom from her unwelcome guest. Her brother and sister RIDE with her by constantly watching over her, never letting her be alone and ensuring we are aware if she isn’t feeling right.  Her teachers and nurses at school RIDE with her during the school day watching her closely and making sure she balances her work and fun of education with being healthy. Allison’s friends RIDE with her by caring about her and asking her tons of questions about her disease. Our friends RIDE along with our family by doing the same and watching out for her when our eyes need to be focused on one of our other kids.

I just started promoting the Chesapeake Bay Tour de Cure bike RIDE to our friends and family – I know Allison will be grateful for all the donations that she will receive but I know she would be even happier to have people take the time to RIDE alongside her. This is going to be the RIDE of her life – a moment to feel SPECIAL instead of DIFFERENT – along with a way to raise money that directly affects and impacts her RIDE of life – all the money goes to the American Diabetes Association and is used to prevent and cure diabetes and to improve the lives of all people affected by diabetes.

Like everyone else with this disease we did not choose to take a RIDE with diabetes, and if I could kick it to the curb I would not hesitate (it is not our friend!), however we have to figure out how to make the RIDE work with my daughters two person bike.  After all the RIDE of life is too short to not make the most of it. I was just telling my son yesterday that life is not about how long you live but what you do with the life you have – and that is all about how you handle the RIDE.

Please join us for our RIDE and join our team Al’s Pals. We would love to have the RIDE of your life meet up with our life's RIDE for at least this one day!!

Until there is a cure,

Jennifer

Taking a breath and counting to 10 together.........................

January 20, 2012

This week living with diabetes in our family has been one that has tested my strength and ability to manage stress – and has also tested Allison a lot. She has been on a terrible roller coaster of a ride for a few days in a row – 580 to 60 and back again – it has not been the most fun time in our house.

After a couple of days of ups and downs I think it finally got to her – she had already started asking me to give her the shots she would normally do herself – in her belly and leg. I thought this weird but from the beginning of this disease in our life I always stressed to her that the minute she wanted someone else to do things for her I would be there – so I was. She came home from school one day because her number was so high and she just wasn’t feeling good – and then she stressed the rest of the day about a test she took and how she did on it (turns out even with high numbers she can perform well on a test.)

Last night after a day on the roller coaster of highs and lows she was back to a high and I asked her to test her keytones. No big deal to me – all she has to do is pee on a stick – not a big deal – right? As she sat next to me on the couch she broke down. She didn’t mind testing her blood sugar and she didn’t mind sticking a needle into her skin – but peeing on a stick, again – that was the last straw for her and she broke. Of course I told her that this was the “easy” part of diabetes – no blood, not sharp things – easy. I didn’t understand and I wanted to get frustrated and upset with her at that moment (because we were both feeling the stresses of the past few days.) But I said okay, let’s both take a moment and count to 10 to calm down.

So I started counting (and when I count I make a point to think of something with each number):

1. I do not have diabetes, she does
2. I don’t know what it feels like to have diabetes
3. I have no idea what being high makes you feel like
4. I don’t have diabetes, my little girl does
5. I cannot make this go away, just keep hugging her
6. Allison has never complained about getting a shot
7. Allison rarely complains about testing her blood sugar
8. I don’t have diabetes, she does
9. How can I make the tears go away
10. Just keep hugging her

As she finished her count and I finished mine – we were calmer and I realized, again, I don’t know what it is like to have this disease living inside my body. I don’t know what it is like to have a mother nagging you constantly about how you feel and to check your blood sugar. I don’t know what it is like to watch everyone else start eating while I wait on my carb count and shot (although at our house we have a rule that no one eats until Allison has insulin IN her body). I don’t know what it is like to have to have your mom come to school to look at a cupcake and give you a shot to celebrate a classmates birthday. I don’t know what it is like at all to feel “high” or to feel “low.”

As we sat on the couch I decided that she didn’t need to test her silly keytones, we would simply have a snack together and I would give her insulin for her high and carbs and if in an hour she was still high we would address the keytone issue. I know that you might think this is playing with fire but she felt fine, she had not had signs of keytones all day with all her highs and she just didn’t want to do it – so I didn’t make her. An hour and a half later she was in a good range for her blood sugar – so we were all good.

As hard as it is on me day in and day out to be the parent of a child with this disease - not getting to take a break (because diabetes doesn’t take a day off) – I need to remember that Allison is 7 years old and she deals with it every second of every day. I wish that I could worry enough for her and me both, that I could take away her stress of dealing with it and that she could just be a kid. I do this by always being worried and nagging her – but maybe I just need to be her crutch – so that on days like last night we can sit and cry on the couch together and hug each other until we get to the number 10 and the pain of the moment passes (which it always does.)

Until there is a cure,

Jennifer 

What I learned from my meeting this week........

January 12, 2012

I am sitting in the airport in St. Louis after a three day meeting waiting to get on a plane to take me home. It was a good meeting from the business perspective – all my work and everything I was in charge of went well – but it was, on a personal side, very difficult.  This isn’t the first time I have been away from Allison since diagnosis but it is the first time I have been half way across the country – but that still wasn’t my issue. The issue was that this is the first time that I have seen a lot of these specific people since Allison’s diagnosis – they all knew something happened to her and that I cut back to a part time consultant for the company – but they weren’t sure of why.

So question after question from people explaining what disease my daughter was diagnosed with and the constant lack of understanding of what type 1 diabetes continued. Maybe I have gotten to comfortable in my own circle of friends and family that understand – that have taken the time to dive in and learn and listen to me and others so that they understand my feelings and emotions. It was overwhelming and hard to not be bitter towards a few of the questions, comments and suggestions from people at the meeting, but I held my tongue and let them give me advice and tell me they were sure my daughter would get better.

I did have the most outrageous conversation about diabetes though and almost went over the edge -I was talking to someone about Allison and we were interrupted by someone else that was listening and she proceeded to compare her dog to my daughter.  Apparently it was very difficult for her to deal with a dog with diabetes but she loved him enough that she decided they would work with him on it. She went into detail about having to give him shots and when he collapsed had to squirt gel into his mouth. It was grueling and hard but she perked up and was pleased to tell me that he lived to be about 12 years old, which is old for a dog. It did get too hard for them when the dog started having kidney problems and they did have to put him down. Immediately after saying that she looked at me and said “I don’t think you should have to do that with your daughter though – she is person so it must be easier to deal with than with our precious dog.” At that moment I actually wondered if she thought that putting our daughter down was an option if it got too hard on us. I still can’t wrap my head around this moment and that someone could or would equate their dog to my 7 year old daughter. It was truly a surreal moment in my life.

There were the slew of other questions that came from everyone that has little to no understanding – but I have heard these before: she must be doing better now, at what age does she grow out of it, a friend of mine has the really bad kind of diabetes at least she doesn’t have that, well she looks healthy in her pictures so why did you cut back at work, and who is taking care of her while you are gone (because apparently my husband is not an adequate care giver.)

Near the end of the meeting though an interesting discussion occurred on how the general public does not understand the industry of the attendees of this meeting  – there are a ton of misconceptions about the profession they lead and they spent a good portion of the meeting discussing how to handle the general ignorant public. The entire time I could only think about the ignorance of the general public about type 1 diabetes – and that included 90 percent of the people in that room. The speaker was wise and helped them through understanding how to use your words to educate and not intimidate. I learned a lot too that I will take with me in explaining type 1 diabetes.

Since everyone at the meeting were people I work with on a professional level I never said anything out of turn or tried too hard to explain too much how they were incorrect – I did at times correct them though.

I got to take two nuggets of wisdom away with me from this trip:

Apparently diabetes in dogs is worse than a daughter with it – but my daughter is not a dog (I actually learned from this that some people aren’t just ignorant they are stupid) and I learned how to speak to people in a different way that have great misconceptions about your situation – I wish I had learned this before the dog conversation!! J

Until there is a cure,

Jennifer