A family living well with type 1 diabetes.

Posts tagged ‘little victories’

This Day.

This day a meeting was scheduled to take place at noon — an IEP meeting to assess how the school is doing at addressing Jenna’s needs in school. Both my husband and I were present along with Jenna’s teacher and the student support teacher. The meeting went well. I was able to voice my concerns about the fact that no one in the school has been trained to give life saving glucagon to Jenna in the event of a severe hypoglycemic episode. We were informed by the public health nurse before the start of the school year that the school is not permitted to give insulin or glucagon. For reasons that are all too obvious, I have grave concerns about this policy.

The support worker understood my point – that it is imperative that someone at the school is trained to administer glucagon. He too questioned why this is the policy. In an effort to demonstrate the steps involved in giving glucagon I reached into my backpack that contains, at any given moment, my laptop, a few books and a large makeup bag with an extensive array of back up diabetes supplies inside (no makeup, whatsoever). This includes, but by no means is limited to, a glucagon kit. I always have it with me. I keep it in an old rigid eye glasses case that used to house my glasses, before my laser eye surgery. I haven’t opened the case to gaze upon the prefilled syringe and accompanying ampule of glucagon powder in months. But today I did.

This day was all about the worst-case scenario. I went into detail about what can happen during a low and when it is the appropriate time to give glucagon. I noted out loud that our glucagon was expiring soon and J and I both agreed we would have to pick another one up at the pharmacy. I then carefully placed the glass syringe and ampule back into the case, closed it and returned it to the makeup bag, grateful for another year that we didn’t have to use it.

Fast forward to this evening:

It was around 7:00pm. The girls had just had baths and were enjoying a hot chocolate before bedtime. I was working at the computer desk and J was snuggled up with the girls in the living room. We live in a new, rural townhouse development with quiet roads that are only used by locals.

It was Jenna who first noticed the black SUV sitting right in front of our town home unit.

“Why are there cars sitting outside?” We all turned to look out the living room window at the black SUV sitting, engine running and brake lights on. Another car was trying to maneuver around the SUV in an attempt to get by. It was a little strange to see a car running yet stationary in the middle of the road with the driver at the wheel, making no attempt to park or continue driving. Just sitting.

We kept our eye on the vehicle for another four or five minutes.

“What the hell is this guy doing?!” J finally said.

“Go out and ask him if he’s okay” I replied. I wasn’t thinking this guy was in any need of medical help. In all honesty, I thought maybe he just needed some directions. But then J said he could see his hand on the steering wheel was moving up and down repeatedly.

“Okay. That’s a little strange” I said. Now it starts to cross my mind that this person may need medical assistance of some kind.

J got up from the couch, headed out the door and walked around to the driver’s side of the vehicle. Another woman, a neighbour, was also there. She had been out for a walk and was compelled to check on this individual who was stopped in the middle of the road, conscious but not responding to questions.

J knocked on the driver door and started talking to the guy.

“Hey, man. You okay?”

The man startled when J knocked on the door and made a feeble attempt at eye contact.

“You okay, bud?” J repeats the question.

Nothing.

I opened the deck door and J looked up at me.

“911” was all he said.

I headed right back inside and grabbed J’s cell phone from the coffee table and made the call. J came and took the phone from me to talk to the 911 attendant while I tried to help the man and keep my girls on lock down at the same time. The neighbour woman who was there told us she was going to get her husband to help and she would be back. I was attempting to get the girls to stay inside the house while neighbour woman’s husband (who we later found out is a medical doctor) arrived, turned off the engine to the vehicle and did a quick assessment.

“He’s sweaty.”

“Maybe he is diabetic” I said. “I’ll get my daughter’s meter.” I ran inside and grabbed Jenna’s OneTouch. Back out I went and performed the check.

Three….two….one….BEEP. 1.4 mmol/l.

“SHIT!” My suspicions confirmed, my heart suddenly broke into a gallop and my legs quickly followed suit as I ran inside to grab sugar. I raced around the house trying to find glucose tabs.

“JUICE!” J shouted from outside.

Juice! Of course! The poor guy can’t hold his head up, let alone chew, for shit sake!

I ran to the fridge but J beat me there. There were three boxes of grape juice sealed together in plastic. He grabbed them and started fiddling with the plastic. I had a feeling we would need more than one box since this was a grown person we were dealing with — not a five year old little girl.

“Just take all of them.”

Back out the door to the black SUV where a man was experiencing the very thing I have been terrified of happening to my daughter for the last three and a half years — the very thing I have been losing countless hours of sleep in an effort to prevent — the very thing that haunts me and compels me to advocate for her with a passion.

And all the while my little girl with type 1 diabetes is looking on — taking in the urgency and seriousness of the situation.

We started feeding the man juice box after juice box. He was able to suck the juice up through the straw. Seven minutes later, he was still very diaphoretic and still unresponsive, his head hanging down with his chin touching his chest. Neighbour-Doctor-Man (Doc, from here on) was attempting to palpate a pulse while holding his head up so he could continue taking in juice.

“Time for another check?” I asked with a voice I didn’t recognize. My words tumbled out of my mouth all at once. The adrenaline was flowing full chisel.

“Good call” said Doc.

Doc readied a finger for me and I cued up the strip and fresh lancet.

Three…two…one….BEEP. LOW.

“He needs glucagon” I said.

“You’re right. I will take responsibility for that” Doc states, reading my mind about the legal ramifications of this intervention.

I ran back inside and got the very kit I had pulled out just hours before to demonstrate to school staff the steps involved in reconstituting and administering glucagon. I then went back out to our deck, sat down on the cold concrete and proceeded to do just that — nursing skills kicking like an old friend, there for me when I need it.

I brought Doc the syringe loaded with a full dose of reconstituted glucagon, still inserted in the vial to avoid anyone getting an accidental stick and to show Doc what he was about to administer. He revealed the man’s forearm, unable to roll his shirtsleeve up past his elbow, and gave the injection.

At one point I looked up toward my deck to see Jazmine standing with Jenna, holding her in a full embrace while Jenna cried. My heart broke knowing my smart girl was getting a harsh lesson in what could happen to her. But I was also somewhat grateful for this. Jenna has never had a bad low. Not like this. And as I mentioned recently in another post, Jenna is stoic and prefers not to invite attention on herself, especially where her diabetes is concerned. She has insisted many times in the past that she is fine when a check reveals a blood sugar between 2 and 3. I worry that Jenna could opt not to speak up when she feels symptoms and therefore risk having a bad low.

Five more minutes passed and Fire and Rescue showed up followed by the paramedics. Finally. From the time we called 911 to the time the help actually arrived was a good 20 minutes, at least. By this time the man had received the proper help from his neighbours — who just happened to be a former nurse with a type 1 diabetic child and a medical doctor — and was now conscious and responding, insisting that he was fine. His girlfriend arrived on the scene at some point and asked him why he had driven so far down the road, passing his parking spot entirely. I quietly wondered if she was ’new’. He told her, in a manner laced with slight annoyance that she would even ask that question, that he had driven too far and missed his parking spot. Clearly, he had been confused and plummeting before he finally, somehow, fortunately made the decision to put on the brakes right in front of our house. We told him he couldn’t have picked a better place to have a bad low.

I apologized for the crazy high he would no doubt suffer after all the sugar we poured into his system.

“It’s cool” he replied through chattering teeth as he shivered in his sweat drenched shirt in the cool night air.

A few more words of relief and gratitude were exchanged and we decided to give the guy some privacy and retreat back into our home to deal with the emotional fallout our girls were, no doubt, experiencing. It was a little past their bedtime but I knew we had to let them express their feelings about what they had just witnessed, especially Jenna. I was interested to know what was going on inside her head.

Once we were back inside and closed the door, Jenna wrapped herself around me and we sat together for a while. She cried some more. I asked her if that was scary for her to see what could happen if a low was really bad. She nodded. She sobbed. I assured her that we do everything possible to make sure she is safe and that we would never stop doing that. I also told her how important it is for her to tell us or her support worker at school if she is feeling low so that she never has to go through that. She hugged me tighter.

This day has been a strange culmination of a series of events that I am going to be pondering for some time to come. I do believe, now more than ever, that there are no coincidences; things don’t just happen. I have seen too many “coincidences” that are just too uncanny to be such. This day was a gift on many levels. This day has strengthened my resolve to advocate for better care in schools for our children with diabetes. This day has left me dumb-founded.

This day has also left me without glucagon and with the sobering realization that we live in an area where timely emergency medical assistance can’t always be counted on. I’ll be making a trip to the pharmacy tomorrow and picking up a real-estate magazine while I’m there.

Letting Go

There are a few significant events in every parent’s journey that mark a time of pride and excitement; first words spoken, first steps, the first time you say goodbye to your child at the babysitter, preschool, kindergarten… These are events worth documenting, photographing and celebrating.

But some of these events are also pretty darn anxiety laden. It isn’t easy for parents — often (but not always) moms — to say goodbye to our babies and trust their care to someone else. But we must, and we do. Sometimes it doesn’t feel natural, but it’s a part of life, right? …to say goodbye and help our children make that slow journey toward ever increasing independence.

Jenna has begun her school journey. She is attending full time kindergarten and, in all honesty, she is absolutely loving it. She no longer has to feel left behind watching her big sister walk into the school every morning. She is a big kid now, in real school. She is ready.

Sure, she had some anxiety at first. She was shy, withdrawn and a little lost. But her teacher, Ms. C, handled it beautifully and in no time Jenna warmed up to her.

Of course, the big pink elephant standing right smack-dab in the middle of the room is…

DIABETES.

Without question Jenna’s diabetes has been a tricky one to juggle. There are a few factors that make it so:

  • Jenna is far from completely independent with her diabetes management. (Of course she is, she’s five.)
  • Jenna is often unaware of her lows until she is well below what constitutes a low.
  • Jenna is stoic. This scares the ever-loving stuffing out of me as she is not apt to speak up if she is having a problem, preferring to avoid the spotlight and be “just like all the other kids.”
  • No staff member at the school is legally allowed to administer either insulin OR glucagon to a child with type 1 diabetes in our province.
  • A single teacher in a busy kindergarten class of 20 young children, all equally deserving of attention, cannot possibly be expected to do her job AND watch a child with type 1 diabetes for the often subtle signs and symptoms of hypo or hyperglycemia, let alone react to a low or high in the appropriate way. (I have two children and trust me – this is no easy task at the best of times.)
  • Since no staff are able to give glucagon, it is absolutely vital that Jenna receive timely intervention in the event of a low to avoid a dire situation.

Given these obstacles, it was crucial that we obtain government funding for an additional support staff in the classroom to assist Jenna with her care.

The trouble was, we had to actually prove that she really does need this assistance.

Jenna’s pediatrician likely anticipated this because I received a letter from him this summer stating that her medical condition placed her in the special category that makes her eligible for this added support. That letter turned out to be the means to a fabulous end and the way it played out was beautiful poetry to this D-Mom who felt all kinds of panic wondering why I actually had to prove my daughter’s need for help to ensure her safety while in school. To me it was as clear as the nose on my face. But this is the system we have and this is the way things are done.

This summer I met twice with the public health nurse who gathered all the pertinent data regarding Jenna’s medical needs and her care. She drafted a care plan outlining, to the utmost specificity, how Jenna’s diabetes management is to be conducted in school: If A, then B. Then follow up with C fifteen minutes later. However, if D, then E…

It is clear, precise and to be followed to the nth.

This care plan was presented at a meeting we — members of the school staff, the public health nurse and I — had last week in preparation for Jenna’s school start this past Monday. This meeting was to provide diabetes training to the staff and give a chance for the concerns of everyone involved to be voiced. The vice principle was also present. She is the lady with pull. She, along with the letter from Jenna’s pediatrician, was key in achieving the ideal outcome.

When the meeting was winding down, I noticed her eyes were wide as she digested the full scope of what she had learned. She realized that this was a life and death situation which would require constant diligence and monitoring beyond what one teacher would be capable of. She promptly excused herself from the meeting stating she had some phone calls to make in her office, assuring us that she would be back.

Staff members who had been pulling for us since last spring when this whole process got started gave me subtle, reassuring pats on the back. They knew her and knew that this reaction bode well for us.

I whispered to Jenna’s teacher “What does this mean?”

“It’s a very good sign. She realizes now what we are dealing with. She can make this happen for us” she whispered back then gave me a wink.

It was all I could do to maintain my composure. All the anxiety and fears I had been living with regarding Jenna’s start in the public school system that dated all the way back to her diagnosis were daring to subside.

The vice principle returned not 15 minutes later and announced that Jenna would have an assistant assigned to her in the class room for four hours everyday.

And it was like  letting go of something I had been clutching with a death grip for three and a half years.

It was validation. They understood how precarious my child’s health is — the fine line we walk.

So now Jenna is attending classes everyday and looking every inch the big girl, school kid that she is in her new school clothes with her giant backpack on her back. I still go in to the school to give her boluses for her snack and her lunch — that won’t change until Jenna is old enough to do so on her own with supervision — and, until today, I had been spending my days in that little room off her class room to be available in case there were any questions. But my presence there has become less necessary as her worker, who is so awesome, has become more confident and capable. I must remain in town (we live rurally, almost a twenty minute drive from the school) to bolus and in case there is a problem — a stubborn high, a dislodged infusion site, etc. — but I am quickly phasing out my constant presence there.

And now it’s my turn to feel lost — proud and relieved, but lost, nonetheless. Suddenly I am struggling to fill some free time and it’s a foreign feeling. I am trusting others to ensure my child’s safety, as capable as they are. I won’t deny it, I’ve had some moments of anxiety sneak up and put me in a head-lock. But I’ll be okay. If there is one thing I am, it’s tough. That is undeniable. I’ve been able to wrestle free from the anxiety when it does ambush me. I just remember that there are good people at that school who really care about my daughter and her wellbeing. They want her to be safe too.

Another milestone, complicated by diabetes, has been reached. Now there’s just the dreaded teen years and college to worry about.

Just keep blogging, Sherry — just keep blogging…

I Don’t Get It.

I am an advocate for people with diabetes. I am one because I have a child with type 1 diabetes. I did not choose to become one, but rather was compelled to become one after my daughter was diagnosed just a few weeks past her second birthday. It is my passion now.

Type 1 diabetes isn’t just a disease for which there is no cure. It is also a disease plagued by misinformation, stereotypes, stigma and blame. Many people still believe that you can get type 1 diabetes by eating too much sugar. The majority of people with type 1 diabetes will tell you that they have had to battle these misconceptions and stereotypes at some point in their lives, or have been the victim of judgement and ridicule. And many parents of children with diabetes have found themselves in situations where they have had to explain to the ignorant among us that they did not, in fact, indulge their child in too much candy or let them play video games rather that go outside for exercise, causing their pancreases to punish them for an unhealthy lifestyle because of poor parenting.

It gets old. And it can, at times, be hurtful. But it is what it is. Ignorance.

Now, as a nurse, long before I had children, I have had under my direct care, elderly patients who have battled type 1 diabetes for many years. They beat the odds and survived into old age; for, to be diagnosed in the 1920’s or 30’s with this disease likely meant a considerably shorter life expectancy than an individual diagnosed today. But they often didn’t come away unscathed by this ruthless disease. I have had amputees under my care. I have assisted a blind woman with her activities of daily living, her sight stolen by diabetic retinopathy. I have dressed toes, blackened and necrotic due to advanced peripheral vascular disease secondary to type 1 diabetes. I have arranged transport every week for a patient with diabetes for their weekly course of renal dialysis. And I have terminated that transport when the same patient made his decision to stop renal dialysis because it had become too exhausting to endure, knowing that this decision meant he would not live much longer.

I have seen far too much to be afforded the comfort of ignorance and denial about what my little girl could face at some point in her future.

My beautiful Jenna.

I also know that today, because of better therapies to treat this disease, the chances of our children with diabetes having to endure these horrific complications are reduced significantly. But they are still a risk. My little girl has spent the past three and a half years with a medic alert bracelet on her wee wrist; three and a half years of this disease waging war on every organ and system in her body. Three and a half years isn’t a long time, but when you consider that she has had diabetes for 70% of her life already and when she is twenty years old, this disease will have been chipping away at her health and longevity for over 92% of her life, it doesn’t take a nurse to realize her chances of developing complications are not minuscule, even with diligence and modern medicine working for her.

From my perspective, there is nothing funny about the complications of this asshole of a disease. Even before I was the mom of a child with type 1 diabetes, or even a nurse, I never really got the humour in making fun of people with disabilities, diseases or special needs. To me it feels like the humour of bullies.

So you’ll forgive me for taking exception to this “harmless” little limerick written by a very popular and well liked humour blogger

Normally, I let stuff like this go. I’m not one to speak up and open a can of worms that would cause me to have to defend my hurt reaction to ignorant people who are only too content to remain so. But for my daughter’s sake I saw an opportunity to raise some awareness and perhaps change a few hearts. So I penned a letter to the author of the blog:

Hi Jenny,
I’ll be honest, this is the first time I have visited your blog. I found a link to your most recent post on my Facebook feed. I’d be willing to bet it is also one of your shorter posts, which makes it interesting to note that it appears to have generated such a long comments list.

I am the mother of a five year old little girl with type 1 diabetes, diagnosed at the tender age of two. Clearly, you are an intelligent woman who writes a popular blog as you have a whole slew of people, your readership, who have your back. They have fiercely come to your defense when some people took exception to your limerick. And I do have a sense of humor. Really, I do. And I am sane. And I have no stick up my ass (as far as I know). And I can laugh about certain things pertaining to my child’s disease. When you live with a chronic condition every minute of every hour of every day for three an a half years, you learn to laugh about certain stuff.

Here’s the thing: What we live with? Parent’s of children with type 1 diabetes? It is something that breaks our hearts every single day. We watch our children go through a fuck of a lot. EVERY. DAY. And another part of our heartbreak is worrying about what their futures hold for them. Will they one day need toes or feet removed?…below knee or above knee amputations? Will they go blind? Will they develop hypertension, cardiac or kidney complications and the list goes on. So it is a lot to ask of people who are so emotionally invested in this disease to “lighten up”.

We also deal with the misinformation and judgement every single day. People asking me if my child drank too much juice as a baby, was overweight, or was given candy. And what is most heartbreaking about that is knowing our children will be out there dealing with this same misinformation and ignorance on their own one day too, much like the adults with diabetes do who took exception to your limerick.

I know you meant no harm in what you wrote. I don’t think you are a malicious person in the least. From reading a few other posts on your blog, you have your own crosses in life to bear. You’re no stranger to life’s shit piles. And you have chosen humor to deal with it. But what if it was your child with the chronic condition? What if your child had a disease that could do all that stuff I mentioned above and more, even IF you did everything in your power, every single day and night to try to avoid it? Can you honestly say you would have no problem whatsoever with a “harmless” limerick like that?

Perhaps we are a little hyper-sensitive. But you have no idea the fears we have for our beautiful children’s futures, both near and distant. They are fears that I keep hidden away. To let them exist at the surface would cause me to be a non-productive, despairing mom. I couldn’t function. Your limerick, took my breath away when I first read it. My heart went into my throat. It felt so cold and heartless. It brought to the surface all those fears and what-ifs I have as the mom of a child with this horrible, relentless disease. That, I guess, is my problem. But I think, if people consider this situation in the context of something that brings as much fear and heartbreak to them as my daughter’s diabetes brings to me, people might have more understanding as to why your limerick hit a nerve with some.

I guess what I am trying to accomplish is an increased awareness. I don’t expect anyone to recant their enjoyment of your limerick. I understand that not everyone has as much sensitivity to the plight of diabetics (both type 1 and 2) as those of us who live with it every day. And I am aware that some people with diabetes enjoy this kind of humor. But there are a great number of us who’s breath is taken away by something this callous – who’s hearts leap into our throats – even when the horrible, frightening reality of what we live with is presented as a “harmless”, clever limerick.

Thanks for the listen.

Sincerely,
Sherry

I didn’t expect much to come of my letter. I knew going in that it would likely draw more negative attention to me and my sensitivity than I was comfortable with and likely prompt some people, namely her fans, to launch an attack on me for being too PC and touchy.

And it did.

I had made up my mind that the most positive thing I would likely get out of this was a cathartic effect–a release–and that would just have to do. I did not expect Jenny, the author of the blog, to write a private email to me apologizing for the hurt her words caused me.

But she did.

She was kind and understanding and I got the sense that she was allowing me to see her serious, sincere side as she made an attempt to right a wrong. She too is a mom, after all. She explained that her brand of humour isn’t for everyone, but it is her way of dealing with the hardships and battles she has endured in her own life. I was truly touched by her sincerity. But she made it clear that her response to my letter would not be published on her blog as that was “…a place for laughter, not debate.”

It’s just too bad not everyone was laughing.

I know that this disease isn’t my disease, it is my daughter’s. And I know Jenna may grow up to find this sort of humour amusing. That’s fine. That’s her choice. I don’t know that I will ever be okay with it, though. It’s just not in me. It feels wrong, callous and hurtful. And right now, while she is only five years old, I will do what parents have done since the dawn of time and advocate for her until she is old enough to advocate for herself.

Another good thing came from my comment and it came in the form of a comment I received on my blog. It is Laura’s comment – the third one down.This really warmed my heart and validated my hurt and the hurt all parents feel in the face of ignorance and hateful judgement directed toward our children with special needs, whatever those special needs may be. Laura got it. And what’s even more awesome, she had the balls to write to me publicly and say so.

All in all, I feel like speaking up was the right thing to do and something pretty awesome came out of it. And at the end of the day, a few more people out there are a little more aware of and sensitive to what people with diabetes are up against.

Win.

Jenna Says You Can Do This.

I really had no intention of contributing to the You Can Do This project. I think it’s a wonderful initiative, no question. And I have definitely enjoyed viewing the submissions by members of the D-OC. But I just didn’t feel I would be able to invest the time to prepare a video to contribute to this awesome project. So, I never even mentioned it to Jenna.

Well, in keeping with the theme of “strange coincidences”, I was sitting at Starbucks this morning with Jenna. (I’m trying to soak up as much 1:1 time with her as possible since she will be starting school full time next September.) She was enjoying a yogurt and I – an iced latte (hot drinks anger the tooth) when, out of nowhere, Jenna says “I want you to record me on your phone. I want to talk about diabetes.”

My eyes widened and I asked her why she wanted to talk about diabetes.

“I don’t know. I just do.”

So as I was cueing up my video function on my iPhone, I told her very quickly about the “You Can Do This” project. I explained that since she has had diabetes for a while now, she might be able to share her story with other people with diabetes. It might help them feel less alone. I asked her if she would like to do that. Very casually, Jenna simply shrugged her shoulders and said “Sure.”

There is a considerable amount of background noise (we were at a Starbucks on a busy Monday morning, after all) but you get the gist of her message.

Here’s what Jenna had to say:

I couldn’t be more proud of Jenna. She really is a veteran of the Type 1 Diabetes battle, at the tender age of 5, and she has much to offer in terms of experience and empathy. I’m glad she wanted to do this. And I’m glad it was all her idea.

My 5K. And My Tooth.

Last night while I was composing my last blog post, a tooth that has been giving me some minor grief for a few months decided to ramp up its game. It hit me suddenly and caused me to decide to turn in as soon as my post was published. I couldn’t think straight so off to bed I went after I dosed up with analgesics. This morning, a call to my dentist at home (awesome dentist? Hell, ya!) resulted in a course of antibiotics ordered (he feels it is likely a nerve dying in a tooth I had crowned last fall) and a new best friend for me – my bottle of extra strength Advil.

Just completed my run. The treadmill looks tired, don't you think?

These little trials have such impeccable timing, don’t they? My tooth had to pick a Friday night to flare up. It also happens to be the 5k weekend. I was worried I would have to walk the entire 5 kilometers fearing the impact of my feet hitting the ground (treadmill) would jar the affected tooth. But the Advil worked its magic and I was able to run most of it.

My time was 40:24 minutes. I’m fine with that. In fact, I am rather proud of it. Not bad for a gal who wore the wrong runners (the ones I opted for rub on my heels and I am now sporting an angry blister) and has a tooth that’s begging for a root canal.  But I’m not complaining. Not one single bit. I enjoyed the run, even though I did it on a treadmill instead of my preferred outdoors. I wanted to be sure of my distance and time.

I just kept thinking about my daughter and all the other people with type 1 diabetes who don’t have a choice. They can’t quit diabetes. Its a part of who they are. It’s for life, unless a cure is found. So there was no way I was going to quit for a silly tooth or a poor choice in footwear (which must run in the family)!

BOOYA!

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