A family living well with type 1 diabetes.

Six.

Six years.

In two days it will be six years since diabetes became an official, uninvited member of our family. It has gone from being that thing that casts a dark, sad cloud over so much to being an omnipresent aspect of life that swings like a pendulum between almost–but not quite–forgotten, or all too there. 

Somehow, somewhere, at some point along the way, diabetes has woven itself completely into our family’s fabric.  We have found a way to see past it more often than not.  We only look directly at it and acknowledge its presence when we have to.  And then only for as long as is necessary to force it to submit by dousing it with insulin or pelting it with fast acting carbs.  All other times, we just go through the motions of blood sugar checks, boluses and carb counts.

Without speaking, we project what might happen in the next hour.  Or two. Or six.  And we do it almost subconsciously. Like breathing, but not quite.

It’s no longer a raw wound.  It seldom brings me to tears anymore. It isn’t that horrible hated monster it once was.

We have grown. Lived. THRIVED. Mostly in spite of diabetes.  But, at times because of it.

We would be different people today if diabetes were not a part of our lives.

Six years.

Three-quarters of her life.

Still hard to look at pictures from before D, though.

Oh. And I’m going grey.

20140607-231548-83748623.jpg

Diabetes Art Day

Art is a journey, much like life is. It is this journey that is important; the growth and learning that results from the experience of creating, or doing. We put far too much emphasis on the end product in art. We critique and judge. We decide if we like or don’t like art. We forget to honour the journey and the message.

There aren’t many better ways to open up a therapeutic dialogue with my kids than over a blank piece of paper with an assembly of assorted sketch pencils, paints, paint brushes and glue before us and the energy of creative potential that is so palpable. We sit together and discuss our approach to a certain topic. I reassure my girls, who are still learning to not be inhibited by what the world might think, that whatever they create–it is theirs, and it is good.

Yesterday when we sat down at our dining room table with our artistic accoutrements before us, we talked about our own personal feelings about diabetes and how we might translate that on paper using colour, images and even words. My oldest daughter, Jazmine, is a very literate 9 year old. She has ambitions of becoming a writer. Not surprisingly, she chose to employ words to express herself:

Image“The Rain of Diabetes” by Jazmine Roberts

My youngest daughter, Jenna, who has lived with diabetes since she was two years old, felt it important to convey how life with diabetes isn’t all bad. She spoke to me about how she feels it should be celebrated because of how strong it makes a person. She mentioned that people should have Diabetes Parties. I found this quite interesting and I told her how I loved the idea of a Diabetes Party. She proceeded to draw this:

Image“The Blue Surprise” by Jenna Roberts

I had been trying to plan and visualize what I would create for several days before sitting down to actually create. It was becoming a source of stress for me. This should have been a red flag to me that I was over-thinking it. But it didn’t occur to me until I saw a message from Lee Ann on her “Diabetes Art Day” Facebook page that might as well have been addressed to me, specifically. It basically said to not plan it and over-think it, but just sit down and DO it. I am paraphrasing, but that is the much needed message I took from it. So, that is how I approached things. I knew I wanted to incorporate several mediums. I have enjoyed working with collage and watercolour pencils lately. Of course, one of my favourite mediums is pencil, so I was sure to employ that. What I created was something that, to me, speaks of the dark, isolation one may feel while experiencing a low blood sugar. I can’t claim to know what that feels like; however, I have witnessed many low blood sugars and have talked endlessly with Jenna about how she feels. When I showed Jenna where I was going with this, her face lit up as she examined my partially finished piece. She looked at me as though she felt validated. “Yes, Mom! That is how I feel!” She then added her own spin on it when she said, “…and it’s like the tree has diabetes too!” I don’t know why I made the tree like something out of L.O.T.R.–it just seemed to happen. I didn’t want the tree to be menacing–more empathetic. That is just what Jenna picked up on:

Image“Low” by Sherry Roberts

Just as an aside, this morning Jenna requested a party on her diaversary, June 9th. This year marks 5 years with diabetes. I think a party is an absolute must.

Please visit the Diabetes Art Day site to see countless more amazing creations from the global Diabetes online Community. We are a creative bunch, indeed.

Steve Needs YOU!

Over six months ago I wrote about Steve Richert. If you missed that post you can be brought up to speed here

From what I’ve learned about Steve in the almost year that I’ve “known” him without actually meeting him in person, is that he is passionate about a few things: his wife, his health, climbing things of a rocky, steep nature and inspiring others to live life to the fullest in spite of diabetes, or any obstacle that one must overcome.

He is driven, level-headed, focused and disciplined.

Anyone who has kept their finger on the pulse of Living Vertical’s Project 365 will tell you it hasn’t been easy for Steve and his wife these past seven months. They have had numerous set backs and life has gone on delivering its usual grab bag of the unexpected in spite of the year long project of climbing every day that Steve has committed to, all the while managing his type 1 diabetes. But Steve has stayed strong throughout.

Along with the set backs have come some pretty amazing opportunities as well. Recently Steve has teamed up with Roche, the maker of Accu-Chek® Nano,  to help fund this project.

This is where YOU can play a part in helping Steve achieve his goal. For every “like” this video receives, Steve’s initiative gets one much needed dollar. Please view the short video where you will meet Steve and see what he is really trying to achieve, “like” the video, then please share the video with your Facebook friends and on Twitter. Every “like” the video gets helps out.

Thank you.

What if…

I’ve actually had docs tell me I’m being too paranoid about my daughter’s blood sugar control. One doc looked at my blood sugar check schedule, which included at least one–and often more checks in the night to ensure my daughter is safe. He scoffed, shook his head and said, “I know I couldn’t function on this kind of sleep schedule…” This doc insists my daughter will awaken if she goes too low. This doc assured me that “dead-in-bed” syndrome only occurs in type 1 teens who are rebelling and experimenting with alcohol.

Two things:

  1. As a member of the online diabetes community it pains me to say that I know this is NOT true.
  2. If he actually thinks this (false) information is a comfort to me he is crazy.

Earlier this summer I missed a night check somehow, likely because sometimes the natural need for adequate sleep wins out. I slept thru the alarm I had set. Jenna was 8 (144) at last check prior to my going to bed–a comfortable number with not much insulin on board to cause concern of an impending low. This may have contributed to my missing the alarm–a false sense of being on top of things. She awoke the next morning a very sick little girl. Her blood sugar was mid 20′s (450-ish) and she had moderate ketones in her blood–the most she has had since diagnosis 4 years earlier. She was nauseous, had abdominal cramps and generally felt terrible. This is a very dangerous situation for a person with type 1 diabetes. Ketoacidosis can occur very quickly and just a fast become life-threatening.

To say I felt guilt doesn’t even come close to conveying how I felt that morning.Image

Today I am devastated to read of a seven year old boy with type 1 diabetes who never woke up this morning. He was diagnosed at 2 years of age–the same age Jenna was at diagnosis. My heart hurts for this family. My heart hurts for the unthinkable “what if” I can’t help pondering–if only for one heart-wrenching, horrifying moment.

Type 1 diabetes is a vicious killer. Type 1 diabetes is a sneaky, unpredictable SOB. Type 1 diabetes deserves funding for research to find a cure.

The Last Resort.

Jenna seemed fine at bedtime.

The usual routine was playing out — bath, hair wash, a little family TV time before teeth are brushed, hands washed and stories are read. Then the final step before goodnight kisses are exchanged — the blood sugar check: 4.2 with a truck load of insulin still on board from supper.

A couple of carb tabs and another story later, a second check revealed a 2.8. This was NOT what I was expecting. Jenna has seldom had a stubborn low requiring multiple treatments. It has happened, but it’s rare, thankfully. So I gave her three more carb tabs, suspended her pump and stayed with her for snuggles and soft words of reassurance. But there was no hiding my concern from Jenna who is as smart as a whip with intuitive abilities to boot. She knew there was reason for concern. She tried to be silly to downplay the situation. I wasn’t in the mood to be silly back even though I knew she was just trying to cope the best way she knows how. She wanted me to join in this silliness like I often do. Anything to give her the sign that she was okay–that she would be okay.

I checked again and as I awaited the result I closed one eye while keeping the other firmly fixed on the meter (something I do when I’m afraid of what the number might be) and repeated out loud in a quiet chant, “Please be a good number. Please be a good number. Please be a good number…” BEEP. 2.4.

This is when mild concern rounds the corner on two wheels to desperate panic. That’s the wrong way, damn it! WRONG WAY!! If the carb tabs are not working, what the hell else is there?!

Glucagon. My final weapon against this most terrifying of D-demons. But before I proceeded, I posted on facebook for some much needed reassurance from my D-peeps. (I love you guys.)

Melissa, a person with diabetes and a mom, was the first person to give me a virtual pat on the back and encourage me: “You can do this, Sherry. Do whatever you have to.”

It was precisely what I needed to hear, even though the moment I read it I had to leave the room so Jenna wouldn’t see me bust into a full blown cry.

I went straight into my bedroom closet to where I keep the glucagon along with all of the diabetes supplies. I retrieved the kit from the travel case that accompanies us on all overnight trips away from home while flashbacks of the last time I had to employ this lifesaving intervention pelted my conscious mind like hail stones falling from a slate black cloud.

Blinking away the tears so that I could see what my hands had to do, I pulled out the contents of the kit on my bed and began reconstituting the white powder in the glass vile with the pre-filled intramuscular needle that comes with the kit. I remember thinking that at least I wouldn’t have to use that needle to inject Jenna since mini-glucagon dosing is done with a subcutaneous insulin syringe instead. That would be little consolation to Jenna, however.

I drew up the six units of glucagon (one unit per year of age) and with the needle hidden behind my back I entered Jenna’s bedroom once more. Jenna was upset now and kept telling her Daddy that she was tired and just wanted to go to sleep. She knew I had something in my hand and she knew what it was.

“No mommy! No mommy! Please NOOO!!”

I did what had to be done and left the room again to stomp the shit out of my bathroom floor while letting the tears come.

It wasn’t the fact that I had to give Jenna a needle. I don’t have a problem with that. It was giving her something I had never given her before that really upset me. Glucagon is a last resort. It is harsh. It gets the job done but it can really kick the shit out of the person receiving it. Vomiting post glucagon is not uncommon. How would she react to it? What will the rest of this night bring?

Jenna was craving toast. Before I gave her the glucagon she kept saying she smelled toast and how good it smelled to her. So as a way to wrap up this upsetting end to an otherwise great day, I invited her and her sister back downstairs for a late night, post bedtime toast snack.

Later as I was settling Jenna back in bed with a post glucagon blood sugar of 9.9, I told her she was okay and it was safe for her to go to sleep now. Jenna became emotional. She hugged me and told me how thankful she is to have a nurse for a mom who “…know[s] how to make it all better.” I told her how lucky I am to have her for a daughter and how amazing I think she is.

“I think you’re amazing too, Momma.”

We hugged more and then Jenna told me with her chin quivering and her eyes flooded with tears that when she grows up she wants to marry a man with type 1 diabetes so that they can take care of each other. This glimpse into Jenna’s thoughts made me realize just how much she gets the seriousness of her diabetes and how alone she feels at times facing the challenges diabetes presents.

I think this is one of the most heartbreaking aspects of being the mother of a child with diabetes: to watch her gradually lose her innocence and awaken to the reality of life with a disease that never sleeps and can turn on you without warning. She is thinking about her future with diabetes. And not just tomorrow, but 20 years down the road! A six year old little girl who still loves to play dress up, play with dolls, skip, ride bikes, blow bubbles and play in the mud should not have to worry about such things. And yet, a part of me is relieved that she is aware and gets it, as much as it hurts my heart.

I’ll be up several more times tonight — Jenna’s blood sugar is lunar bound and I just heard her awaken and take a big long drink from her water bottle. Last check was 16 mmol/l. This roller coaster ride is far from over.

*Nothing here should be construed as medical advice. Please consult your healthcare team of professionals if you have any concerns about your or your child’s diabetes.*

I can’t be the only D-parent that makes happy faces out of the zero when writing out the carb counts for school snacks, can I?

20120608-072003.jpg

The prompt: If you had a superpower — what would it be? How would you use it?

When I was a kid, my Mom could make it all better. Somehow, her hugs and kisses just did. Even if she really didn’t actually make it better — for me, just her TLC was enough to make me feel better. It is the magic Moms possess.

Kids want Mom when they don’t feel well.

Jenna doesn’t feel well when she has a high or low blood sugar. This means she doesn’t feel well on a daily basis. She musters through, sometimes without missing a beat and no one is the wiser. But other times, the glycemic ride from hell can knock her flat on her little scar tissued posterior. She wants hugs and lots of em. She wants snuggles with Mom on the couch. She wants a gentle voice telling her she is going to be okay. She needs to feel safe and comforted. And during those times there is no place on earth I would rather be than with my little girl snuggled in my arms.

Superpowers? I’m a Mom. I’m good to go.

Jenna had a low tonight at bedtime. I employed my ‘superpowers’ to help alleviate the symptoms. Also, three carb tabs.

Follow

Get every new post delivered to your Inbox.

Join 1,066 other followers