Speak now…

Below is my prepared speech for the Lions Club – Diabetes Awareness Forum. I didn’t actually get to present it at the forum as we ran out of our alloted time – but wanted to share it anyway… 

 

Our family has been living with Type 1 Diabetes for just over 4 years.

My daughter Eden, now 12 was diagnosed just before her 8th birthday on July 4th 2010.

As with any other D parent – diagnosis day will be etched in my brain forever.. It is a day where our lives completely changed – some days I believe for the better – some days I curse D with all of my being and wish it would leave us alone.

When Eden was diagnosed we were shocked – it seemed to happen so quickly. There were no lingering symptoms – it was just BAM – healthy one week and seemingly overnight she turned into a frail, lethargic kid who was usually so full of life.

We got extremely lucky – I happened to know some of the symptoms – so when they reared their ugly head I KNEW deep down what was wrong.. Eden was diagnosed early without being in DKA which is a life threatening complication. A mothers intuition maybe, I knew the symptoms and I knew Eden was sick but beyond that I had NO IDEA what changes it meant for our life.

Eden was a rock star – she handled the diagnosis and hospital stay with amazing strength.. I think she actually laughed when she was given her first insulin shot – I’m sure more out of nerves than anything else.. The hospital stay for me is a bit of a blur – it was so overwhelming with all of the information that needed to be adsorbed to care for your child. Hours upon hours of training before going home all the while trying to come to terms with the seriousness of it.

When we got home it was incredibly overwhelming – following the doctors orders to a T. Scared to death that if we did anything wrong we could endanger our precious daughters life. I would watch her sleep and cry wishing I could take it from her.

It took a while for Eden to start to recognize some of the symptoms of low blood sugar in particular. She would become incredibly mad and aggressive when her blood sugar would drop. Many times we would have to physically hold her down to test her blood sugar and try to calm her enough to get her to eat or drink something. It was intense – heartbreaking and scary at the same time….

We tried hard for Diabetes to blend into our family – not wanting to let it run our life entirely. After getting past the first month or so we felt pretty good. Within a year Eden was moved to an insulin pump from injection therapy and the steep learning curve started all over again. It was a good move, but not without a lot of struggles.. Eden screamed and cried and hated every single site change – it is incredibly difficult to knowingly inflict pain on your daughter – even though you know you are doing something to help keep her alive. The insulin pump has been a good addition to Eden’s management as it is easier to fine tune insulin dosages for a constantly growing body.

After a pretty good run – about a year or so ago things started to get challenging. Growth and puberty hormones threw our life into a tailspin. Eden’s diabetes was very hard to manage – she herself was starting to act out in defiance against Diabetes and getting burnt out with the day-to-day requirements imposed from this disease. Her out of control blood sugar numbers were affecting our home life and her school life – usually a perfect student – I got contacted by her teacher about her behavior for the first time ever. I was stressed, over tired, emotional, grumpy and burnt out myself and was facing one of the biggest challenges of my life. Keeping my daughter safe, alive and emotionally well when we were both at our wits end and wanting D to just take a hike and never come back.

Luck was on my side – I happened upon some T1D support groups on Facebook that were a HUGE help and we got through it. Knowing that other people were going through the same struggles and hurdles was my lifeline and just what I needed.

Not many people understand the heavy emotional side of caring for a Type 1 Diabetic child – so I started blogging about it. At first to help me and now to help others in the T1D community and to spread much needed awareness about this disease. I read constantly and learn so much from other D families who have so much more experience than I do.

D affects our lives in so many ways, physically, emotionally, financially and socially. Our eldest daughter Ally gets the rough end of the deal too. Eden gets a lot of attention – not necessarily good attention – but we are always fussing about blood sugar numbers, carbs counts, insulin dosages and site changes. Over the years I have needed to attend birthday parties with her, play dates with her, school field trips and every single basketball practice and game.. (hundreds of them!) That means over the years I have also missed out on precious time with Ally and I know that has caused friction and a divide between us and the relationship that they share as sisters.

Type 1 Diabetes has as a whole made our family stronger. We need to depend on each other – it can be literally life or death dealing with this disease day in and day out. Eden is incredibly brave and strong and has had to grow up so much faster than kids her own age. People see a beautiful, athletic girl who is always smiling and full of life. Type 1 Diabetes does not hold her back nor will it stop her from chasing her dreams. But people do not see what we go through behind closed doors every.single.day. and the roller coaster life we live and how hard it can sometimes be.

We are gradually teaching Eden to manage things on her own – not an easy thing to do as a parent, especially when mistakes can have such huge consequences.  Living with Type 1 Diabetes is a huge responsibility every.single.day. especially for a pre-teen, with currently no end in sight.

Obviously my biggest hope for the future would be a cure for Type 1 Diabetes. But if that doesn’t happen in my lifetime – I would be happy if research could at least stop new diagnosis – NO MORE families having to live with the burden that is T1D

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