Tag Archives: 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.

The Vulnerability in Type 1 Diabetes

I hopeVulnerability, it’s not something we as human beings embrace. Vulnerability has been linked to and associated with weakness, obligation, onus, all descriptive of feelings that are capable of haunting someone. The vulnerability in Type 1 Diabetes is hard to escape. I have been vulnerable since my son’s diagnosis in November of 2013. It feels like feeling vulnerable is the norm, and feeling secure is a fleeting feeling that I experience once in a while.

Being so fragile, constantly, is exhausting. I work continually to clamber back toward who I used to be, overtly confident, non-affected, gliding through life seeming to have it all together. Now if I can make it to my kids bed time without a major break down, I have conquered the day.

Living life under a microscope, essentially in a pressure cooker, the majority of the time, I feel like I am about to burst from all the pressure. Most days, I feel like I am barely hanging on.  This has been exacerbated this week, as Carter started the pump on Tuesday.

We had finally, in some ways, fell into a routine.  We knew how Carter reacted to dosages of insulin, how much he needed at any given time, and would just inject him to correct a high, or to dose him to cover what he was about to ingest.  His a1C was good in October 2015, 8.0.  I was thrilled, but at the end of the day, it all could be better.

I decided I would get Carter the pump, mostly because it would mean less pokes.  I envisioned the ease of dosing him remotely, letting him graze throughout the day to his heart’s content, and allowing him that milk he pleads for at 2:00 AM at his night check.  After all, it would just require a quick press on the remote, and he would be dosed!

I didn’t account for the complete change that starting the pump introduces.  I came home from our appointment Tuesday, the appointment where I had to put in my first infusion set.   I succeeded, but felt suffocated by the feelings of vulnerability that took over, and not only have they not left, they have grown in the 4 days since we began this new journey.

At the end of the day, it feels like Carter was diagnosed all over again.  I wasn’t prepared for the emotional toll starting the pump would take on me.  Waking every 2 hours through the night to check his blood is exhausting.  I feel so tired and so defeated, but I cling to the understanding that once I master this learning curve everyone is going to be happier.

Dealing with failed sites, an infected site, and every other issue known to happen when on the pump within the first week has been overwhelming.  But I watch the joy on my son’s face when he looks down at the pump as it vibrates, injecting insulin.  He beams, and lets me know he’s getting his insulin.

Being able to have the freedom to not get so many pokes, I watched Carter start to eat more.  The unspoken toll that this all takes on the diabetic is heartbreaking.  It is so hard to comprehend what they go through, and not get so caught up in the emotional toll it takes on the caregiver.  At the end of the day, feeling vulnerable doesn’t hold a candle to the peace my son feels being on the pump.

If I have to learn a difficult new task every hour of every day to ensure that my son feels as normal and happy as can be, I will do it in a heart beat.  Watching his happiness grow, along with his appetite, makes this transition less anxiety ridden, and more exciting for the possibilities Carter now has to live life to the fullest, despite having Type 1 Diabetes.

 

*My son is using the Animas Ping Pump.  For more information, visit Animas.com

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.

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.

 

The Ups and Downs of Type 1

maybeI hate today, actually a better statement would be, so far, I hate this year. When it comes to the management we have endured pertaining to Type 1 Diabetes, 2015 hasn’t been handed to us on a silver platter.

A lot of this is to be expected when you have a young child with Type 1, especially as they go through growth spurts and the like. Teething, growing, illness, these are all things that affect the way Type 1 Diabetes behaves on any given day, at any given hour.

Today, we have been fighting low blood sugars. I’ve always said that battling high blood sugar numbers is aggravating, and battling low numbers is terrifying. When Carter’s blood sugar is low, a different kind of care is required.  More vigilance, more supervision, and this is required whether it is daytime or nighttime.  More so if it is in the middle of the night.

Tonight it seems no matter what I do, I can’t get his blood sugar to rise.  Luckily he is hovering in the 80 range, which for a person without Type 1 Diabetes is a perfect resting blood sugar.  Tonight however, I’ve fed Carter a peanut butter teaspoon, 8 oz. of milk, and half a juice box and he is 88.  This means, without the carb loading I’ve done with him this evening, he would most likely be reading at a blood sugar of 50.

Now he is full of liquid and food, and I have to check his blood every hour, making sure that he doesn’t dip too low and become hypoglycemic.  This turn, is deadly, especially in the quiet of the night.  So I will set my alarm for every hour and monitor my son, making sure he makes it through the night.

I think this is one of the biggest misunderstood measures that is rarely discussed outside of the diabetic community;  beyond the frustration, beyond the exhaustion, we are responsible every second of everyday to keep our child alive.   Failure isn’t an option, and discovering that with each minute, the stakes change.

Truth be told, it is so difficult to bring understanding to those who don’t live this life day in and day out.  Hearing the horrific, difficult issues we as Type 1 Diabetic parents face daily, doesn’t resonate with the proper mind numbing fear that we experience throughout our days.

The feelings of helplessness, fear, anguish, anger, determination, pride, joy, all overlap and it’s hard to realize which feeling you are in from one minute to the next.

But the one feeling that is never missed, is once you are out of the woods, and you get the blood sugar reading you have been working so hard for, there is an overwhelming feeling that washes over you.  It is welcome and sought after continually, and is known as relief.

Type 1 Diabetes and Anger

diabetesthoughts.blogspot.com
diabetesthoughts.blogspot.com

“Don’t hurt me mommy!” This is the new phrase that comes out of my son’s mouth lately when I check his blood or give him a shot of insulin.

Type 1 Diabetes and anger walk side by side, and as Carter gets older he is manifesting a hatred for the life he has to lead.  I understand, to a degree, his anger.  I work hard to not be angry daily dealing with this disease.

It’s harder lately, as Carter pushes back when it comes to his care and the management of this horribly frustrating disease.  As his mother my heart breaks into pieces hearing him plead with me not to hurt him.  Then I am stuck with the difficult task of trying to explain to my not even 3-year-old son that in order to live I must poke him.

This year has been really hard so far, we have battled illness continually in some form since January, and feeling crummy already, then having to get pricked and poked in order to make sure DKA doesn’t add fuel to the fire was rough for Carter.

There have been many days this year that I have wanted to throw in the towel, but then remember I can’t.  Type 1 Diabetes never clocks out, there is never a down time.  The only options you have is to find ways to push through the exhaustion and the disappointment that greets you daily.

My prayer is that Carter will understand soon how because I love him so much I monitor his care so closely.  I know he will grasp this concept eventually, yet now there is an added dread to the blood checks and shots that exist throughout our day.

I watch my son wince when I grab his hand, just to hold it.  Every time I touch him, he anticipates a poke.  I take every opportunity to just hold him and cuddle with him, in an effort to reinforce our bond and connection minus the diabetic care.

I know this phase will end at some point, yet being in the midst of it is trying…to put it nicely.  I don’t know if my anger toward Type 1 Diabetes will ever completely subside, and now watching my son’s anger grow is a hard thing to witness.  I remember that his journey is much different from mine, and I must allow him these feelings in order to move past them.

“The forces that tend for evil are great and terrible, but the forces of truth and love and courage and honesty and generosity and sympathy are also stronger than ever before.”

Theodore Roosevelt