Tag Archives: cure diabetes

Numbers

My world has become consumed with numbers. A1c, 6.8, glucose rage 100 – 140, danger zone 70 or below, conversely 180 or above. Alarm sets for 12:00 AM, 3:00 AM, 6:00 AM, blood glucose checks every two to three hours, more if needed. Copay amounts, numbers of vials of insulin, amount of units to be dosed to cover carbs to be consumed, but through all these numbers, the most important number, five…..the age of my son who works through these numbers every hour of everyday with me.

Two nights ago, exhausted, my alarm went off at 3:00 AM, i snoozed it and 5 minutes later it went off again. I had checked Carter at midnight, and his blood sugar was 180. He didn’t have any insulin on board, other than his basal insulin and my body tried to convince me to just go back to sleep, that he was fine. My heart and brain knew better, I staggered out of bed and checked him……..45. The race began to save his life, as happens often with this disease.

My flight down the stairs began. I grabbed a juice box, a cup of milk, and some marshmallows, and his glucagon, running back upstairs prepared for anything. Carter started not being responsive to the juice box, I climbed into his bed, and sat him up, shaking, he started to open his eyes. I opened his mouth and squeezed the juice in. He started to respond. A new number became prevalent, 20, the number of minutes I would sit with him to make sure this low is properly corrected.

Carter fell back to sleep, in my arms, and I then sat counting his breaths. It’s never the same scenario, never the same number, never the same correction that works. It always feels like a gamble, shooting in the dark to see what will work this time. I then have this 20 minutes of sitting in the dark of my son’s room to think about the number of times I have called and beg and pleaded with insurance to approve the devices we need in order to keep my son alive, only to be denied.

My mind shifts to the number three, the exact number of weeks until Carter starts school, and will be in the care of teachers who don’t know what his lows look like, what his high blood sugars look like. Ten, the number of minutes it takes me to convince myself that pushing past my fears is the only way to give Carter a normal life in spite of this disease.

It’s all numbers, all the time. Luckily, this time everything worked out OK, after 20 minutes, I re-checked Carter and his blood sugar was 110. I spent the following 10 minutes stopping myself from think of the “what if” scenarios. Left back at one, another hour of sleep lost, but grateful that Carter was safe.

Managing Type 1 Diabetes is all about numbers, and calculations, and math. One wrong calculation can be unbelievably detrimental, and shift the whole day or night. We have become really good with numbers in this house, we have had to. Yet the biggest number that I hope to see grow, is the awareness of those in my life and beyond who will gain a better understanding of what carter goes through in order to survive.

The Pressure of Managing a Type 1 Diabetic

The one thing people never talk about, is the pressure associated with managing a Type 1 Diabetic child. Yes this disease is manageable, yes, there are many devices that allow for better management of a relentless disease, but the underlying responsibility and pressure are forgotten in the fold.

As the parent to a Type 1 Diabetic child, my son’s existence relies on my ability to care for him. Working feverishly to maintain stable blood sugars can feel like a futile effort most days. Not letting a bad day with Diabetes define you, can be even harder.

There have been many nights that I sit and reflect on the day and feel the guilt of things I should have done differently. After all, we have been working at managing this beast called Type 1 Diabetes for over three years now, I should be a pro by now. What I don’t account for is human error, it is so difficult to function at one hundred percent, when working on only a few hours of interrupted sleep.

Type 1 Diabetes robs you of so much, it robs you of joy some days, robs you of sleep, robs you of peace, and piles immense pressure onto an already weakened spirit. Some days it feels like it is crushing you. Yet through the ashes, beneath all this disease robs, it pushes you to view life through a different lens.

Every day, every moment is a gift. We fight every moment of everyday for survival, and for normalcy. Yet, the pressure is still there. When a severe low, or massive high rear their ugly heads, the pressure to stabilize my son can be suffocating.

When I feel completely under attack from the pressure that managing Type 1 ensues, I find that changing the scenery can help. Once I get Carter stabilized I will take the kids out of the house, take them to the park. Getting out in the fresh air, and changing our view has a forgiving effect that helps me feel human again. It can be easy, sitting in the house, feverishly monitoring blood sugars, carb intakes, insulin on board, to forget there is more than survival, there is life to live.

Some days, I have to be forced. Forced to look at the bright side, forced to get out of the house, forced to find the silver lining. These are the days when the pressure can seem like it is too much, where I would pay for a break, but it’s on these days, when once we have found the joy, it is so much more meaningful, because we have had to fight for it.

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.

Growing with Type 1 Diabetes

Managing Type 1 Diabetes, can be a very lonely existence. Especially when you are managing it for your child. Without being engrossed in the care that is required, it is easy to watch the care being given with judgmental eyes.

People ask me all the time when Carter will grow out of Type 1 Diabetes. When I tell them he won’t they ask me when it will all get easier. The answer to this question, again is it won’t.

It’s difficult to wrap one’s head around the effort that is poured into managing a Type 1 Diabetic, it’s impossible to bring to light all of the variables in one conversation.The majority of the time, days are OK, and manageable. But there are those days where everything changes on a dime and care becomes almost impossible. An uphill battle that feels like you are climbing up the side of a glacier, barefoot.

We are rapidly approaching the time when Carter starts kindergarten. I will have to relinquish control of his care to the team at his school and I am extremely nervous. I am face to face with a mountain that I am not ready to climb. Allowing someone to care for my son, and having the trust in them to make the right decisions, in a moments notice is daunting.

Type 1 Diabetes is not a play by the book disease. It is an illness that changes minute by minute, based on many factors: activity, insulin on-board, excitement, fear, basal rates, growth, being nervous, food, or lack thereof, and the list goes on and on.

This is a milestone that we need to get through, a hurdle that must be traversed, but my heart isn’t ready. Beyond the exhaustion associated with Carter’s care which spans twenty-four hours a day, every day, the preparation for Carter’s entrance to school has me stressed.

I have faith that my son will be adequately cared for, with proper training, I will relinquish control and allow my son to take more accountability for his health.  It is amazing, as I am reminded yet again, how Type 1 Diabetes changes every aspect of life.  One hurdle at a time, that is what is required when managing Type 1 Diabetes.

How Life Changes after Diagnosis

struggleAfter the immediate devastation of a Type 1 Diabetes diagnosis for your child, the ebb and flow of the severity of how life changes after diagnosis is difficult to describe.

On one hand, the diagnosis brings a determination you didn’t know you had.  A determination to enjoy the fullness life has to offer, a thirst for the faith you may have haphazardly thrown on the back burner, a newfound purpose, and all of these are found at the bottom of the hole you are forced to attempt to crawl out of.

As we approach our three-year mark of Carter’s Type 1 Diagnosis this November, I look back and see that I have been through the many stages of grief many, many times.  These days, it’s not really clear what brings the grief stages again.  Maybe it’s the after summer blues, maybe it’s watching your son explain what his insulin pump is to those who stare at the beach or the pool, maybe it’s the built up exhaustion, who knows, but I do know that some season’s suck more than others.

Watching your child grow up, carrying this burden is bittersweet.  I remember standing in the hospital during diagnosis week, and wishing for the day when Carter was able to understand, when he would then be able to  take an active role in his care.  That day has arrived, and it’s more heartbreaking than I anticipated.

Watching your child realize they are different from their peers is hard.  Birthday parties, getting together with their friends, going to the beach, going to the pool, having to constantly interrupt his fun to do a blood check, or correct puts a damper on his fun.

I don’t think the change is a one time event, I believe after a diagnosis of that magnitude, we are ever-changing, always evolving and taking on what comes next.  We are always growing, individually and as a family as it pertains to Carter’s care and management, most often within each moment.  No one day is ever the same, and the worries that each day bring are always different, and changing.

The hardest days for me, are the ones where I can sense Carter is tired of it all.  On those days, my heart breaks just a fraction more.  I would give anything to take this burden from my son.  It affects our whole family, as my daughters are left with a shell of a mother most days.  Lately, exhaustion takes over and I walk through the day an ill tempered zombie.  Always tired, always worrying, always only half present in what is going on as I watch Carter like a hawk.

Will it get better?  Until there is a cure, I don’t think so.  We have decent days, and have fallen into a routine that works for us, but it isn’t void of immense effort and complications.  The frustration and disappointment are too much to bear some days, but we preserver and move on.

My son and daughters, exemplify the forbearance of those who know where this path leads.  We’ve traversed this road more than once, and we know that we come out of these trials stronger.  All in all, I see how their brothers health worries them, especially Ashleigh.

We fall down.  We pick ourselves back up.  We cry, we laugh, we are like any family, we just cling a little closer, because we are faced with the threat of possible loss every minute of everyday.

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.