Honoring my promise

Since Brandi is having surgery this week I have had to make the heart breaking decision to not participate in the Ride to Cure Diabetes in La Crosse, Wisconsin next week.  As much as I want to ride I simply must put my daughter's health and recovery first. Brandi has been and always will be my #1 priority.

However, I strongly believe that a person's word is their bond and a true measure of their character, so after talking with both my team captains (the one from my local JDRF and Moira, our Team Outspokin' leader) I have received approval to have my own personal Ride to Cure Diabetes.

So...here's my plan.

Brandi's recovery will take approximately 6-8 weeks (barring any complications) so on one of my weekends off in October I will be hitting the Katie Trail in St. Louis and making good on my promise to ride in honor of all those who live with diabetes.  The ride is TENTATIVELY either the weekend of October 5th or October 19th.

You all have supported my ride efforts both emotionally and financially and I WILL honor my commitment.  I may not have a crowd or get the pretty medal, but I will have the satisfaction of honoring all the men, women, boys and girls who have shown such strength and courage.

Thank you all for the love and support you've given. I plan to make you proud!

Hope

 

 

Several months ago a dear friend sent me a bracelet that had silver blocks spelling out HOPE. It was an unexpected but cherished gift that has always been with me. It helped me stay focused, it helped me remember to never give up, it reminded me that our family is loved by people who have never met us.

 

Yesterday the bracelet broke and I was heartbroken. I gently picked up all the pieces and placed them lovingly in my wallet, and then I went back to caring for my daughter.

 

As I waited for Brandi to finish her test today I pulled the pieces of the bracelet out and thought about how much hope has been a part of our lives for the last three years. At times hope and faith have been the only things keeping us going, and of course Brandi's diabetic alert dog Hope has changed her life.

 

What I realized is just like my bracelet, it may seem as if your ability to hope is broken, but I've learned you just have to gather up the pieces, string them together with your faith, and nothing is impossible.

 

 

 



Controlling the crazy thoughts

Last night I was standing in the doorway to Brandi's room while she was getting her CT scan and I overheard one nurse ask another what the date was. When I heard the reply of "August 2nd" my mind immediately went to a dark place. 

It was two years ago this month that we were told Brandi needed a pancreas transplant to survive. Two years ago that we were told she would probably only survive another two years without one. 

I immediatelely set off to find the doctor and see if this was it... if her body was shutting down because we were officially out of time, panic clawing at my gut and tears filling my eyes. I wasn't ready, we couldn't be out of time, we just celebrated a year of no hospitalizations...

It was my fault, I got too lax, I got too cocky, I had to make a big deal out of the anniversary and this was Fate's way of smacking me down, putting me in my place. How could I forget how sick she still was? How could I be so STUPID!?!

A long talk with a very sympathetic doctor assured me this wasn't "the end", it was just another bump in a very long diabetes lined road. A big bump, a serious bump, but just a bump. 

DKA is bad, it can be life threatening, but the truth is no matter how hard we fight, no matter how much food we measure, how many carbs we count or insulin we inject sometimes our diabetic loved ones just get sick. 

We have 504 plans, sick day plans, backup plans, and management plans but the bottom line is diabetes doesn't give two shits about our plans. How many times do we have to hear that diabetes doesn't follow rules until we stop trying to blame ourselves for this hideous disease's behavior?

Brandi's sick, she's been sick for a long time and although we had a pretty good year it doesn't mean that she's been magically cured. Her pancreas still doesn't work. Her adrenal glands still don't work. She still has seizures and her back is a mess. Nothing's changed so why am I...or any mom and dad of a diabetic...so quick to blame ourselves?

The truth is we work our asses off to keep it all under control. We go years without sleep, we stand toe to toe with doctors and insurance companies demanding our children get the best medical care, we write letters, we meet with our political leaders, we advocate, we educate, we do EVERYTHING right yet still blame ourselves when something goes wrong. 

Nothing short of a cure for diabetes is going to make our kids better. But that's okay, because I....WE...are doing everything we can to fund that cure. We walk, we ride, we have galas, bake sales, and drive our friends crazy asking for donations...we do whatever we need to do to raise the money needed to keep those scientists doing the research to find the freaking cure we so desperately need. 

I must stop blaming myself... WE as a community MUST stop blaming ourselves. We must take all that energy we're wasting on our guilt and  harness it for good, use it to educate, use it to advocate, use it to help our kids grow up feeling "normal" and secure in the belief they can do wonderful things...powerful things, despite having diabetes. We need to teach them that diabetes hasn't made them weaker...it has proven they are stronger!

I want a damn cure and I'm not going to stop till I get one.