Thursday, April 7, 2016


I wrote this post on the airplane while traveling to an Advocate Forum given by Novo Nordisk. On Monday I will post my thoughts about our meeting. Until then, I'll just leave my emotions here. With prompting from a friend, I left it raw and unedited.

For the past 18 years my life has been submersed in the familial relationship of Mom and Type 1.

My tolerance for the disease ebbs and flows like everything else in life.

Some days I can think about it all day long and my psyche isn’t affected.

Other days, I rebel against it. Pretending it isn’t important. Refusing to give it the power it demands while it sits on the throne of my boys’ well being.

Lately I have been suppressing an uproarious anger. I push it down, not allowing the feelings to make it to the surface. It seeps into my cells and becomes a natural part of my spirit, and as a result, I find myself on edge more than I should be.

There is an article circling around social media about a teenage boy who passed away while driving, allegedly because of his diabetes.

There is another article that generally finds its way right below about a young, recently diagnosed child who passed away.

I flip through the stories, numb. I let the anger sit with me, but don’t allow manifestation.


It exists nonetheless.

My anger exists and I’m so so tired.

I’m tired of watching my children jog on the hamster wheel that is Our Diabetic Life.

I’m tired of watching them give in from the exhaustion and then watching them in horror as they allow the wheel to toss and turn in violent circles until they are forced to find their footing again.

I’m tired of nothing new. Of mice being cured, but humans not. Of organizations leading on that they are hopeful for a cure, but behind closed doors not expecting one. We are like perpetual Hansels and Gretels, finding candy houses and preparing to feast on their greatness; because we hunger so badly we ache…but then finding nothing but fight after fight inside each one.

I wonder if pharma knows how hard it is? I wonder when they announce their profits if they think of us and the constant injecting of their products and the toll it takes on bodies and minds.

Type 1 Diabetes times three lives in this house. There is always someone bolusing. There is always someone eating. There is always someone changing a set, someone overwhelmed, someone who just wants to forget.

Every minute of every day. We are not allowed the luxury of not thinking about it. Yes I am grateful for insulin to keep my children alive. I praise the Lord for it. But I. AM. TIRED.

And I don’t even HAVE diabetes.

I’ve had all three boys on CGM’s before. What results is a wave of information that is so overwhelming I can’t think straight. What results is every minute turning into every second. It results in no sleep for me, and no sleep for them. Beeping. Beeping. Beeping. Three boys in puberty means someone is always beeping. The guilt sits on my shoulder like an especially large elephant. I want them to be on CGM’s, but I cannot. Looking at the graphs my brain swells with the outpouring of numbers. I watch those with one child with diabetes and I know that if I had but one, they would wear the CGM. My child would be safer, healthier. And even though their A1C’s show that all is well, I’m not doing what all of you are doing.

And I hate myself for it.

But the hate is suppressed. I won’t let it consume me, even though it has. Even though it is part of who I am.

Don’t get me wrong, I don’t’ feel sorry for myself for having three amazing boys with Type 1. I only know that with three, I can only do so much. And the story I’m telling myself is: it isn’t as much as you.

I’m doing my best.

Yes, they thrive.

Yes, they live good lives.

But yes, they are tired too.

I’ve sat for the past 15 years reading article after article about breakthroughs.

And yet. Same. 15 years of same. Since the introduction of Humalog and Novolog, there has been nothing that has changed our lives. Throw us a bone universe. Give us something that will make life more predictable for my boys.

I’m not sure how much longer I can harbor this anger. Pretending it doesn’t exist has worked for so long…I’m not sure I can continue this forever.

Give us some change. Concrete change that I can pick up from the pharmacy or order from DME. Something that I won’t have to take out a second mortgage for.




  1. Meri....I am right there with you. Thirty three years ago I was diagnosed and told that there would be a "cure" in five years. So, what gives? I am not looking for the cure, but the very realistic probability that the AP will be available within three years. Just to not have to think about it all the time would be a tremendous giving back to me of my mental faculties. Let alone .....I have no clue how you even keep your head on straight with three boys with it! Praying for you from the "same" ground you live on 24/7. Peace, love, hope, and blessings to you and the boys..........

  2. Meri - good post. As you probably remember Anne and I are also parents of three diabetic boys. Our oldest is 26yo and a PhD candidate at UC Denver where he is a diabetes researcher. While he and I were discussing his woefully non-compliant younger brother last year, he commented "guilt and shame ought to be formal complications in the diagnostic manual for T1." I'll never forget that comment. No doubt, burnout is a real and staggering problem with this disease.

  3. Meri, You are amazingly strong day in and day out. You deserve to tire, to burnout, to be mad at the medical system and their promises. I can't imagine not having a full nights sleep in 15 years...I would be bonkers! I hope someday soon there is cure for this hideous disease, but in the mean time...we have to keep our hope. If I won the lottery I have promised to give, give, give to find a cure. My 42 year old son and his 15 year old son, my grandson are both T1' grandson since 2 yrs old and my son well after that at 36. Your strength is our strength. Continued strength to you and blessings to you and your family.

  4. Trying to keep my teenager on her CGM is challenging for me and when she's on it, I juggle feeling overwhelmed with numbers, but also relieved for safety. We fight depression every day. Can't ever begin to imagine your life...and I do think of it often. Your life. God bless any of you out there with multiples. I do think of you from time to time and say a quiet prayer.

  5. Great post Meri. You always hit the nail right on the head. As the Grandma of 2 T1D "Sweet Sisters" I worry constantly for them and for my daughter who is the main caregiver for Taylor 10(diagnosed age 3) and Jordyn 3 1/2(diagnosed age 21 mos). I can't imagine how you stay as upbeat as you do. Waiting for your post forum post. God Bless you and your 4 boys. Grandma Smith (

  6. Thank you for always sharing your heart. It's like a warm embrace to so many who need to hear they are not alone. Sending you that same hug tonight.

  7. Meri, you are a saint! You are appreciated more than you can know for what you share here. The love that holds your children close, the power your example gives them, the amazing insights you share about how to survive, etc -- you are amazing! I'm an agent orange diabetic, and I'm still angry about that, but you--you have so much on your plate that I can't imagine how you do it! Blessings on you. Remember that The Father will bless you, and keep you, but you have to open up to Him! I survived four different near-death experiences, the last one where I actually drowned and was on the other side for "a time" -- time doesn't exist there! I was send back to love my family, and it has been an amazing experience since then! For He told me that Love is all there is, just love, and Love your family! So here I am. I share this with you because I feel the stress you're under, and the effect it is having on you, but I assure you -- He will fix it!

  8. Dear Meri~
    My heart goes out to you..... I don't have children or grandchildren with T1D (yet...), but I've had it for 50 years, since age 5, and my biggest "deal" is honestly, fatigue... so, so tired.... and of course, guilt, worry, fear.....I have CGM and love it, until I crawl into bed at night, and "beep, beep, beep..." above target... I want to set it real high so it doesn't beep, but I don't want it to go/stay high!!! Some nights it beeps and beeps and I give insulin and more insulin.... The dr. sees a1c of 6.2 and says, good. I see (and feel) all the highs and lows... and read of those who have theirs at 5.5... I love reading all the blogs, but sometimes I think that makes me more tired too... I'd like to eat something sweet and/or salty....and then go take a nap.... Story of my life!!! But to encourage you.... For YEARS I lived with high blood sugars, and have had a remarkably "normal" life with few complications... I believe your boys will do GREAT for years to come....


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