Dear John

Dear John,

I talked to your mom tonight. It seemed like we were on the phone for hours even though it was really closer to 20 minutes, but I guess there are situations were minutes drag out forever.

She seemed like a nice woman, certainly a mother who loves her son very much. I heard her love for you in every word she spoke, in the quiver of her voice, the pain in her screams. I think if we had "met" under different circumstances we might have become friends, but I know in my heart I'm the last person she ever wants to speak to again.

When your mother called me tonight saying she'd found you unconscious and barely breathing I immediately feared the worse.  Twenty-two year old men with no medical problems rarely collapse without cause, but when I asked if there was any chance you had overdosed on drugs she adamantly denied it. She assured me you were a good kid, a collage student who held down a part time job while keeping your grades up. You routinely mowed your grandmother's lawn and drove her to do her grocery shopping.  You didn't do drugs, absolutely didn't do drugs, there was NO WAY you had taken drugs!

I kept talking to your mom, waiting with her for help to arrive, encouraging her to check your breathing often, to unlock the door, turn the porch light on, check your breathing again, put the dog outside, check you again, reminding her to tell me if there was even the slightest change in your condition.

When your mom said you were making "funny noises" I told her she needed to pull you off the couch and onto the floor. I know my request didn't make any sense to her but I knew what was coming, I've seen it hundreds of times before and I wanted to be ready for the inevitable.  That's when you're mom found the syringe under your body and started crying hysterically. I only had seconds to get her calmed down, to ask if she knew CPR. I almost groaned out loud when she told me she had meant to take a class but had never found the time.

I told your mom how to reposition your head to open the airway, praying that this would be enough to keep you alive until the paramedics arrived, but knowing it probably wouldn't, and sure enough in seconds your mother screamed that you were no longer breathing

I tried to talk to her calmly John, I really did, but she was screaming and not listening to me. I had to yell to get her attention so I could teach her a 4-hour CPR class in 30 seconds while you lay dying in front of her.  I counted the compressions for her, encouraging her to go faster, make sure she was pressing hard enough, two compressions per second I counted for her "1, 2, 3, 4, 5, 6, 7, 8, 9, 10 , 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30... one hand under the neck, one hand on the forehead, tilt the head back, pinch the nose close, completely cover his mouth with your mouth, blow two regular breaths into his lungs, about 1 second each.  Did the chest rise with each breath?  Okay, 30 more compressions... 1,2,3,4,5... FASTER... 6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30...two more breaths, hand under the neck, the other on the forehead, tilt the head back, two regular breaths... did the chest rise? Good...30 more compressions..."

Your mom worked so hard to keep you alive, I worked so hard to keep you alive...we did CPR for 16 minutes until help got there....16 minutes that felt like 16 hours.  Even I was asking the medical dispatcher what was taking so long.

I had to explain to your mom the ambulance that is normally near your home was already on a call so the next closest one had been dispatched, but it would take a little longer to get there. "Keep doing CPR" I told her while also assuring her the fire department was responding too and everyone was getting there as quickly as they could.   I could hear your sister crying in the background, calling your dad, screaming for him to come home.  You're mom was working so hard that she was gasping for air, trying to count with me, pleading between the numbers for you to stay with her.

The scream that tore from your mother's lips when the paramedics got there and took over broke my heart.  I've heard it before, so many times. It's a scream you never forget, unlike any other scream you've ever heard.  It rips your heart out to hear, I wanted to wrap my arms around her, comfort her and tell her everything would be okay, but I couldn't because I didn't want to lie to her. Instead I told her what a great job she did, how she had done everything possible to help you, I tried to calm her and keep her attention focused on me instead of what the medics were doing to you.

You were lucky John, your mother found you while you were still alive, I was already on the phone with her when you stopped breathing, we started CPR immediately. So often it's too late when we get the call, more often than not the person is already dead and no matter what we do, no matter how long we do CPR or how much Narcan the medics administer we can't get them back.

I hope your near death will save your life.  I hope you learned from your mistake, I pray you turn your life around, but I know that using heroin even one time forms an addiction so the odds are we'll be dispatching another ambulance for you in the future for yet another overdose.

I only hope we're not too late.

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. 

One Year

Today marks one year since I brought Brandi home from her last hospitalization. 

Oh what a difference a year makes!

A year ago my daughter was a walking skeleton at 93 lbs. 

A year ago she was telling me what music she wanted played at her funeral. 

A year ago I prayed Bella was old enough to remember her mother. 

A year ago I had nightmares of finding my daughter dead when I went down to check on her. 

A year ago she was placed in palliative care and I was told it was the last step before hospice. 

A year ago I was clinging to hope by bloody fingertips. 

A year ago I cried everyday, several times a day. 

A year ago the doctors talked to me in hushed tones telling me Brandi had no quality of life and her body was too sick, too tired to continue fighting. 

A year ago I wondered how long we'd have before we were rushing Brandi back to the hospital. It was normally a matter of days but never longer than two weeks. 

A year ago we were anxiously awaiting the arrival of Brandi's diabetic alert dog, praying her intervention could keep Brandi alive until she was well enough to receive a pancreas transplant. 

Today Brandi is a healthy weight and she looks amazing. 

Today she is able to have outings with her daughter, not many, but even one every month or two is significantly more that what she had. 

Today Bella no longer asks me if her mommy is going to die. 

Today Brandi smiles and laughs. She has tickle fights with Bella and she's able to attend family functions more often than not. 

Today, every day isn't filled with gut wrenching fear. We still have fearful moments but it doesn't rule our lives anymore. 

Today Brandi is planning to have a spine stimulator implanted to help manage the pain she has from all her herniated disks. She's at the end of the process that we had to scrap two years ago when her health rapidly declined. 

Today she's getting things ready for her child to start school, another dream we didn't think she'd live long enough to see. 

Today is a day I never thought I'd see. 

Thank you to all our family and friends who have sent daily prayers on her behalf. Thank you sweet Jesus for bringing us Hope, because her arrival is when everything started changing. Thank you Dr. Raju for the tremendous love and care you've given my daughter.  Thank you my darling Brandi for being the fighter you are, for continuing to fight when you wanted to give up and thank you God for answering our prayers. 

Brandi still fights, still takes obscene amounts of insulin and other medications to keep her alive and keep her pain under control. My baby is a warrior, the strongest person I have ever known. Although each day continues to be a battle for her, we know its a battle she WILL win!-

Oh the irony!

Today we had our second bake sale benefiting the Juvenile Diabetes Research Foundation's Ride to Cure Diabetes and I'm happy to say it was a HUGE success!  Between our two JDRF Bake Sales we have raised $1,285...that's a LOT of cookies, cakes, pies and other baked goods, but as I told someone today, if you're going to eat crap you might as well eat crap for a cause!  The irony of raising money for diabetes research by selling food with high sugar and high carb content is not lost on me.

One of the greatest joys of these bake sales is meeting other people who have family members living with diabetes. 

Even though our family has people with Type 1 (my daughter) and Type 2 (my grandfather, grandmother, father -all now deceased- two of my brothers, and my best friend) it's still nice to meet others in the diabetic community and connect. The best part is watching them live...really LIVE...not letting this disease stop them from pursuing their dreams. 

These people inspire me to continue fundraising, educating and advocating, because realizing their dreams is so much harder with diabetes. My goal in life, my #1 priority, is to raise money to fund the cure or at the very least come up with better medications and treatment options for everyone living with diabetes, especially my daughter. 

Last week my dear friend died due to complications of T1 diabetes. I hear so many stories of people young and old who lost their lives due to this disease, I've seen my daughter close to death, and now I watch my beloved 5 year old granddaughter who has been tested and has the markers for diabetes and I say ENOUGH. 

I want to find a cure for this disease BEFORE it is triggered in Bella or a million other unsuspecting children's lives are irrevocable changed forever. I want to find a cure for my friend's children, Liam and Netty, who I love with all my heart. I want to honor the memory of all the children who were found dead in bed or died because their families, and even their doctors and school nurses failed to see the symptoms of diabetes prior to their tragic deaths. I want to continue the fight on behalf of every mother and father  who is pulled into the hallway of a hospital emergency room and told their child has diabetes. 

So the fight continues but make no mistake, a cure is out there and we WILL be the generation that finds it!

Rest in peace my friend

My friend died yesterday and I'm heart broken.

Steve and I have been friends for 30 years. We met when we both worked for the sheriff's department and we immediately became friends, as the years passed our friendship blossomed into a much deeper brother/sister type of relationship.

We supported each other through marriages and divorce, birth of children and death of parents. He teased me about being a bleeding heart, I teased him about having no heart...but he did...he had an amazing heart.

Steve can best be described in one word...SALTY.  He could - and did - cuss like a sailor, he was outspoken and at times crass.  He had the most hysterical dry sense of humor.  He didn't entertain fools and if he took a dislike to someone there was absolutely nothing that could change his mind, but if you were one of the lucky few he allowed into his heart, he loved you with every fiber of his being.

I was blessed to be one of the lucky ones.

Steve was a cop, one of the best I ever worked with although I often teased him about being a "shit magnet." He loved sitting with the "fucking rookies" (as he called them), telling tale after tale of his law enforcement career.  New guys would sit with their mouths gaping open in amazement, listening to all he'd done over the years.  That man was one of the best story tellers ever.

Every conversation I ever had with Steve started with the same four words, "Hey kid, what's up?" My answer was normally, "Nothing old man, what's up with you?" and usually at some point during the conversation I'd nag him about his diabetes.  He'd tell me to stop being a bitch and I'd tell him to stop being an asshole, then we'd both laugh and tell the other we loved them.

When Brandi was diagnosed with diabetes Steve became my go-to guy, my walking, talking diabetes encyclopedia.   During every conversation we've had over the last 8 years he ALWAYS ask how she was, how her numbers were, if she was staying on top of the disease.  More than once he told me to remind her of all his problems...which of course would lead to me telling him to get his head out of his ass and start taking care of himself...and the fight would be on again.

He gave me unflinching support and I gave him the same. 

Steve has been and will always be part of my life.  I miss him so badly I want to scream, but instead I'll honor his memory by continue what I've been doing...educate and advocate about this monster we call Diabetes. Steve knew the monster intimately, it almost killed him several times and caused part of his foot to be amputated.  He hated diabetes, hated the shots and finger pricks, the effect it had on his body and his spirit.

When I talked to Steve about wanting to participate in the Ride to Cure Diabetes he laughed at me, saying I'd lost my mind and reminding me I wasn't 20 years old. But when the laughter stopped and I explained why I NEEDED to ride, why I NEEDED to do everything I could to find a cure for him and Brandi, and after a moment of silence he told me he understood and thanked me, and from that moment on he supported me 100%.

I miss Steve, it hurts to know I'll never hear his grumpy voice or listen to his stories again.  I will love him and I'll miss him every single day for the rest of my life, and I imagine when it's my time to go and I reach the pearly gates my grumpy friend will be there saying, "Hey kid, what the hell took you so long."

Rest in peace my friend, I take comfort in knowing you'll have no more pain, no more needles and no more suffering.