Category Archives: Juvenile Diabetes

When You Feel Numb

There are days when you just feel numb. Whether you are new to diagnosis, or like us, have been managing Type 1 Diabetes for the past three years, some days are harder than others.

Carter has been struggling with lows lately, and sickness has once again permeated our home. My oldest daughter is recovering from bronchitis, and I have been working feverishly to keep the virus from attaching itself to Carter, add-on being 11-weeks into my fourth pregnancy and it’s a recipe for ultimate exhaustion.
While making dinner tonight, I heard Carter’s dex receiver beep. It was his low alert, I called him downstairs and asked him to bring me his receiver and come to me in the kitchen so I could help him correct his low. He brought me his receiver, I grabbed a yogurt handed it to him and told him to eat it.

Carter walked out of the kitchen, placed the yogurt on the dining room table, and went back upstairs to play with his sisters, unbeknownst to me. A few minutes later I hear his urgent low alarm sound. I run out of the kitchen, look at his dex, he is now 55. I race upstairs and walk into my daughter’s room and see a dazed Carter sitting on the floor.
I grab him, grab the frosting from his bag and shove it in his mouth. Once he is rising, and has finally hit a number in range, out of pure frustration I yelled at him. I yelled at him for being so irresponsible, for creating an emergency that wasn’t needed, but mostly because he knowingly left me to be the only one caring about his low blood sugar. Eventually Carter understood the error he had made, and promised me he would work harder at following instructions so this doesn’t happen again.

Now that my son is peacefully asleep, with good blood sugars, I am overwhelmed with guilt and sorrow. I understand that my son is only 4-years-old, but by the same token, having been dealing with Type 1 Management for the past three years, he is well aware of what is required to keep him healthy. I am very open with my son with the care we must have to ensure his survival, and what that entails, as well as the ramifications of not following the regime. Not taking care of himself results in a hospital stay at best, at worst it means death.

When Type 1 Diabetes has been dealt, there is no time for games. No time to test the waters, the consequences of playing games is too costly. I can’t be the only one in this house who cares about his health. With Carter starting school in less than six months, he has to obtain an accountability for his care.

He has to grow up fast, it’s unfair, it sucks, but it’s necessary. If I wasn’t preparing him to care for himself without my presence, I wouldn’t be doing my job as a Mom.

So though I feel guilty, though I feel sorrow, I know these feelings are temporary, that tomorrow is a new day, and that with each incident Carter is learning a lesson. He’s learning what my expectations of him are, what he must do to stay healthy, that he is accountable, but most of all, even though there was anger, he knows it is out of immense love for him that I am so serious about his care.

May tomorrow be filled with more feeling, feelings of joy, feelings of love, and less filled with the numb walk of going through the motions of managing Type 1 Diabetes.

Be Good to Yourself

Be Good To YourselfIt is so hard, to remember to be good to yourself. It’s hard when you’re a parent, when you’re a spouse, and even harder when you are the parent of a Type 1 Diabetic.

Every move you make, every dose of insulin you give, every blood check, feels like the weight of the world is on you. We want perfection, with a continually imperfect scenario. We want our children to live normal lives, when their very lives are dependent on a regime that is exhausting and all-consuming, at best.

We are harder on ourselves, because as the adult, we should know better, do better, be better. But at the end of the day, the reality is, we are human beings, who through our mistakes, our fumbles, our grief, our heartache, our suffering, and our shortcomings, learn and get better.

Carter sunbathingI love this picture of Carter, it shows him loving life, enjoying the sunlight beating into his skin as he lounges in the water. But for the pump site attached to his tummy, one would never know he was a Type 1 Diabetic. Living with Type 1 Diabetes, proves to my son that he is anything but ordinary, he is extraordinary.

Me and Carter fight for every breath he takes, and through that battle, we have proven more to ourselves. We have proven how much fight we have in us, how brave we are, how tough we are, how we rise to the occasion, how no matter what is thrown at us, we find the solution. Despite everything, we grow.

There is a comfort in our bond, in seeing the trust my son has in me to help him survive, and how much I am able to prove of my love for him through each and every scenario. My son has encountered situations that most adults have never had to deal with. It has given him a confidence and maturity that many strive for but never obtain.

So though I make mistakes, I will be good to myself, because I know I am doing my best. I fight everyday for my son’s health, for his life and I am proud of what my family has grown into, through all of this.

Diabetes Makes Me Different

My siteCarter: Mom, I want to take my site off.

Me: Why Buddy?

Carter: Because I don’t want people to laugh at me

Me: Who would laugh at you?

Carter: People

Me: Why do you think they would laugh at your pump?

Carter: Because it makes me different.

Me: You earned that pump, it’s what keeps you healthy. If anyone laughs, or tries to make you feel “different”, you tell them it’s your bravery patch that you wear. Tell them that they wouldn’t think getting poked with a needle for every meal would be that funny if they had to do it. Buddy, your pump does make you different, it shows how brave you are, how conscious of your health you are, and have to be, and it’s the best tool we have to keep you healthy.

Carter: OK mom.

Me: I love you buddy…..

Carter: I love you Mom.

I cried, I went downstairs and cried for about 15 minutes.

The best part of this conversation, was that my six-year-old heard it and came in to Carter’s room to reassure him of his bravery. She also told him that she would always protect him and wouldn’t let anyone laugh at him. I have watched Ashleigh protect her brother, when at birthday parties, or even at the park, she has fiercely defended her brother, and I know I can count on her to protect her brother’s spirit and feelings.

I hate that my son feels different, but am so happy that I gave birth to a fierce warrior who will assist me in protecting my brave son, and will make sure that he is not misunderstood.

This is exactly why I let Carter put a site on my arm, I don’t ever want him to feel alone.

Type 1 Diabetes, Two Years Later

11.20.15It’s two years later, and what have I learned? I’ve learned never to have expectations from Type 1 Diabetes, whatever I expect Type 1 to do, it will do the opposite.

I’ve learned that no matter the efforts, no matter what the statistics have been with Carter’s numbers for the past week, the day I think all will be well, it won’t.
I learned that in an instant, everything changes.
I’ve learned a new depth of sorrow. I’ve learned how to rapidly pull myself out of that hole, so I can manage Type 1 for my son.
I have learned who my real friends and family are.

I have learned to walk alongside something I hate with every fiber of my being, and work with it, not against it.
I learned that Type 1 Diabetes is a family disease and it affects my daughter, Carter’s older sister, just as much as me.
I have learned how to push past the distraction, past the pain, past the disappointment and love like I have never loved before.

I have learned how to value life, how precious every moment truly is.
I have learned patience, perseverance, and passion in advocacy.
I have learned about how I am in charge not only of my happiness, but the happiness of my children, especially my son after each poke he endures.
I have learned, that no matter how tired, how defeated I feel each morning, MY mood sets the tone for the rest of the day.
I have learned to really celebrate the victories, as they are few.
I have learned the true definition of surrender. My biggest adversary is something I cannot control.
I have learned the depth of a mothers love, over and over, and over again.
I have learned what it means to never give up. Never give in, and never back down.
I have learned how to live under constant pressure.
Most of all, I have learned a convoluted, antiquated process filled with algorithms that are necessary to keep my son alive. Insulin is not a cure, it is my son’s life support. I hate the process, but I love the outcome. I remember that on November 20, 2013 I was faced with losing my son, and I will do everything in my power to make sure that never happens again.
I learned about my strength, I learned that no matter how wounded or scared my heart is, I always have the capacity for great love for my children.
I have learned that through tragedy, come great triumphs. I hate Type 1 Diabetes, but I love what it has brought out in my family in these past two years.

The Impact of Type 1 Diabetes

Carter and Daddy beach June 2015It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.

It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed.  Everything continues to change.  Relationships,  outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.

Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids.  There is no common ground anymore,  ground where you can relate with what your other friends are going through.  Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.

The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand.  People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested.  Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.

Extended family, old friends, new friends,  there is so much to explain, all of the time,  so much to be judged on by the unknowing  eye.  In an effort to remain protected,  you disconnect.   Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.

It’s refreshing when you surround yourself with those who have been through the dark tunnel you have.  Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.

The reality is that having a child with Type 1 Diabetes, death is always shadowing you.  Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked.  Type 1 Diabetes, for all intents and purposes is a silent disease.  One that isn’t visible, and  one that shrouds the care that is necessary in mystery, but for those who live it.

As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be.  That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed.  We didn’t even understand what we needed to survive.

Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis.  It takes some time to be OK with those who judge or wallow in the hurt of being left behind.  After all, there is a bigger purpose here, a bigger calling.  Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.

 

Tired of Type 1 Diabetes

www.wrha.mb.ca
www.wrha.mb.ca

I’m tired.  Tired of the blood checking, tired of the dosing, tired of the mathematical calculations, but most of all, I’m tired of watching my son battle this disease every minute of every day.

I’m tired of the constant changes, tired of the not knowing, tired of the what ifs, tired of grieving.  I would love a break, it’s something I fantasize about, dream about, something I know is not a reality.

I think back to those first 17-months of my son’s life, it was a different time back then.  It was a time where we took every minute of every day for granted.  We were carefree, before I even had a concept of what the word carefree really meant.  We lived “normal” lives, with the “normal” worries.  What we were going to wear that day, what we would eat for dinner, where I would take the kids to get them out of the house.

Now there is so much effort put into Carter’s care.  It’s exhausting.  We went to look at insulin pumps today, and I wasn’t prepared for the emotion it would bring to the surface.  It wasn’t long ago that we were thrust into this life, with no choice, now here I was looking at technology strewn across the table, and presented with the choice of which small device I wanted to pick to assist me in keeping my son alive.

I am grateful for the insulin pump, which will allow greater freedom for Carter to be a child, though connected to a device, he won’t have to slow down to get a shot.  This in turn will allow him to not get poked multiple times throughout the day, it will be one bigger poke every 3 days and then but for the cell phone shaped pump he will harness to his clothes, Type 1 Diabetes will be somewhat less invasive.

For all intents and purposes, today should have been a joyous occasion, well as joyous as picking out hardware for a disease you hate could be.  But as we sat and listened to what training would be required, how the pump differs from multiple daily injections, the risk of Carter being able to unlock the pump and dose himself enough insulin to kill him, the weight of this change hit me.

All in all, I know this is the right choice, the right change, it will carry with it a learning curve, as any change that sustains your child’s life should.  I know I will have better management of Carter’s numbers, he will be in range more, he will be free enjoy being a kid, etc. etc.  Yet there are aspects that are a scary new.

As I sat tonight meditating on the choices ahead of me while out to dinner, I sat at the table with Ashleigh and Natasha while Greg took Carter to the restroom with him.  As we sat at the table, across the way from the bathroom, I heard Carter’s screams and yells.  I looked up and met Ashleigh’s sad eyes as she said to me: “Carter just got his shot.”  It was affirmation that I’m making a better choice for my son.

I hate Type 1 Diabetes, and ultimately, I’m just tired.

Switching to an Insulin Pump

www.medtronicdiabetes.com
www.medtronicdiabetes.com

Researching insulin pumps is bittersweet.  It’s exciting knowing that there will be more freedom for your child, yet at the same time, it’s a daunting task.  Searching for the best “device” to keep your child alive, was never something I thought I would have to do.

I look at the features of these insulin pumps and am impressed with how I will be able to remotely dose Carter from another room, as opposed to having to chase him and nail him down to inject the insulin up to eight times a day.  Then of course, the stories from other pump users about the tightening of numbers, better A1c numbers, etc.  The pro’s seem to negate the cons.

Yet the closer I get, my nerves make me wonder if I am strong enough to go through with it all.  Learning a new system, one which may take up to a month to fully understand and tweak to get Carter’s ratios right, it all seems counter-intuitive.

I am comfortable with Multi Daily Injections, but deep down I know Carter isn’t.     Carter is who this is ultimately about, although I know the one larger poke every 2-3 days will take some getting used to, Carter will enjoy being more “normal” while walking through the most not normal circumstances, having to manage his Type 1 Diabetes.

Carter’s health and well-being are the most important thing to me, no matter what I have to do to accomplish that.  Yet, I feel like I am yet again grieving this diagnosis, though we are almost 2-years into it.  Up until now, Carter’s Type 1 Diabetes was virtually an invisible disease.  One that was only noticed when I would check his blood or dose him.  Now, wearing a pump, it will be an advertisement of his condition.

All this makes me realize how fragile I still am.  When we started giving Carter shots, we didn’t have a choice.  It was a necessity in order to keep him alive and have him survive.  Now I have a choice, it’s odd making life saving choices for your preschooler; and honestly given the choice, I would choose not to have to deal with Type 1 Diabetes.

Ultimately,  all I’m trying to do is raise a healthy and happy little boy who doesn’t feel held back.  Right now I believe the pump will give us that.  It’s hard enough having Type 1 Diabetes to manage, I’m striving to give my son just a little bit more freedom, and hopefully through this new learning curve and process it will help me feel less broken.