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.

Advocating for your Type 1 Diabetic Child

IMG_1250The day my son was diagnosed with Type 1 Diabetes, I became his biggest supporter and his advocate. I was determined to make this seem “normal”, familiar, less invasive than it inevitably was.  Yet advocating for your Type 1 Diabetic child is easier said than done.

Carter was diagnosed when he was 17-months-old, which was bittersweet. On one hand, he was so young that essentially this way of life would be all he knew, yet the terror that invaded me was numbing. He was so small, so fragile, and I didn’t know how to get through this catastrophic event, especially since I knew nothing about Type 1 Diabetes prior to his diagnosis.

I have found, that is the norm, most know not much about the autoimmune disease that affects more and more people each day. Type 1 Diabetes has been on the rise and the reasons as to why, remain a mystery. My personal journey, compelled me to educate when I could, mostly in an effort for my son to grow up in a world that knows more than before about what he carries so bravely each and every day.

Everyday is a new opportunity to educate those around us, those who know us, and especially those who are strangers. I have checked Carter’s blood in aisles in the grocery store, in line at Disneyland, in restaurants, basically anywhere and everywhere it is necessary. I also dose him anywhere and everywhere.

We recently were on vacation, and while waiting for our food, my children had made friends with a boy who was running around the grassy hills, he too was waiting for his meal. The boy was around 5-years-old, sandwiched nicely between Ashleigh’s six-and-a-half-years, and Carter’s four. The kids ran around and played for a good 10 minutes before both tables food arrived.

The boy visited our table often throughout our meal, and happened to be standing right next to Carter when I pulled out the shot of insulin and injected him. The little boy wretched back in panic as I dosed Carter and screamed, “What are you doing!?” I calmly explained that my son was a Type 1 Diabetic, that his body doesn’t make insulin anymore and he needs to inject it to eat and to stay alive. Though still affected, the boy seemed to understand.

Every action is education, my husband pointed out how I scared that little boy and my response was that I wouldn’t hide and shame our son in dealing with his condition. At the end of the day, those around us need to adjust. It can be done, it has to be done. I will never adhere to society and how uncomfortable those around may be, when my son’s life is on the line. THIS is our normal, this is what my son does to live. I am proud of his daily sacrifices to live and each poke, whether it is MDI (Multiple Daily Injections) or his Inset site changes for his pump, is a deceleration of his survival.

I had a brief conversation with the boy’s mother, and she was eager to quickly learn what Type 1 Diabetes meant and we discussed the signs. Small victories, as I advocate for my son. Spreading awareness is the most important tool we have to assist those in understanding this disease. Allowing those to see what our hero’s endure, is the first step in tolerance, a bigger step toward compassion, and an overall guide in breaking the perception that surrounds 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.

Barely Hangin On

Carter 4. 2016I’m not quite sure what landed me at this edge, feeling like I am barely hanging on. In a way, it feels familiar, like I have camped out here before, frequently.

Maybe the gateway to this campsite is illness. Any sickness that Carter contracts brings an anxiety that is difficult to describe. Most minute illnesses we get through without any issue, then there are those that land my son in the emergency room. This past Thursday was one of those times.

We had been battling the stomach flu, it began with Natasha, my 11-month-old, worked its way to Ashleigh, my six-year-old, and finally latched onto my three-year-old Type 1 Diabetic son. Both my daughters threw up twice, replenished fluids and rested and recovered within a full 24 hours.

Carter, began throwing up at 8:00 am and by 6:00 pm he had thrown up 8 times. He couldn’t keep anything down. It was at that point that I called the endocrinologist. Although his blood sugars were good, I could see the beginnings of something brewing. Dehydration, Diabetic Ketoacidosis (DKA), when Carter’s eyes started to look sunken in, I knew it was time to take him in.

Lately, I feel as though I am starving for mercy.  It has felt like one thing after the other as I struggle to hang on to the edge of the cliff I fell off of three long years ago.  Watching my son battle Type 1 Diabetes has been humbling, heartbreaking, and unequivocally stressful all at the same time.

I am tired of the guess-work that it requires to keep my son alive.  I hate that I can look in his eyes and see that he’s heading toward a low, or a high blood sugar, yet at the same time I am grateful.  Grateful that through immense trial and error I now know how to see it in his demeanor before it strikes.

I’m sad that the hospital is a close comfort, because I know that they have everything at their disposal to save my child.  I hate watching my son be brave for all the pokes, all the site changes, all the IV’s, and all the scar tissue which is evidence of his condition.

Being on the brink of a breakdown seems to be where I have set up camp.  I don’t know how long I will stay, or if my camp will ever move on to acceptance.   I do what I can to find a way to survive where I am, never having all the answers, always having to fight, not just for my son’s life, but for understanding from the non-diabetic community.

Those who don’t live this life, 24/7 don’t understand the difficulty.  In a way, I feel it is my duty to report what we go through.  Maybe to raise awareness, but mostly to raise empathy.  I would hate to watch my son navigate through an environment where no one knew what Type 1 Diabetes entailed, and had no idea how hard it was to live in a world that requires constant vigilance and monitoring.

Carter was released 5 hours after being admitted to the Emergency Room, luckily that is all he needed this time.  I caught him in dehydration, and the beginning of DKA.  I’m glad that I caught it, I’m happy that I stopped DKA in its tracks, but angry at the same time that my son is continually haunted by the possibility of an illness where he is worse off than his sisters because of a misunderstood autoimmune disease that doesn’t play fair.

I would be remiss, if I didn’t document these trails, if I didn’t talk candidly about the world that the majority of Type 1 Diabetics live in, just on the brink, the brink of  life, which consequently also is the brink of insanity.

I believe that is the cliff I have been hanging on for the past 2.5 years, the brink of insanity.  Knowing at any moment my son could land in the ER, knowing that my tireless efforts throughout the day, are futile, knowing that even though I live in “groundhog day” the outcome of each day managing Type 1 in my son, always delivers a different outcome.

It’s unfair, it’s inconsistent, but it’s our reality.  It’s our hell, it’s our purgatory, until there is a cure.

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.

Getting the Insulin Pump

animas pingIf someone would have told me that starting the insulin pump for Carter would change our lives, I would have agreed, but thought so for negative reasons.

Learning a whole new system of managing his diabetes, along with a convoluted new vocabulary, then the removal of the long acting insulin that kept him stable through the night, was enough to have me running the other direction.

I had debated the pump switch for well over a year, always finding an excuse to avoid the transition.  Carter’s  A1c seemed on track, and I was literally living day to day, hour by hour some days.

I made the decision in July of 2015, about a year and a half in to Carter’s diagnosis.  It took a while to get everything together and ordered, in order to set up his pump experience.

Carter officially started insulin pump therapy on January 5, 2016, and it has changed our lives, but for the better.  Although I am up virtually all night as we adjust to “pump life”, I am so thrilled with how much better Carter’s glucose numbers have been.

We recently went to Carter’s endo appointment and learned that his A1c was down from 8.0 in November 2015, to 7.8 in February 2016.  I truly believe that month on the pump prior to the A1c check made a huge difference.  It’s not a massive change to his A1c, but it was enough of a change to solidify that we made the right decision.

Carter does have tighter control on his numbers, and I have noticed that my happy child has returned.  Site changes have become easier and take only 2 minutes, every 3 days.  I would watch Carter tense up before every meal, anticipating the shot of his insulin in order to eat.  I love being able to dose him remotely and not have it hurt him.

We’ve adjusted relatively well to having a pump, and Carter loves the freedom it gives him, to graze and not be poked all the time.  It reminds me, that even though this disease is awful at times, and requires immense vigilance, we are so lucky to live in the time we do.  Having the luxury of these machines, that are able to help us live our lives in the closest manner to normal as possible, enables not just longevity, but a better quality of life overall.

Having better control of Carter’s numbers means the likelihood of complications as he gets older gets diminished.  This is better for me, as his mom, but most important, it is better for Carter.  Ultimately, this is why I chose to start the pump for Carter, though it was a major life change and adjustment, Carter, being able to live life to the fullest, not being help back by Type 1 Diabetes was worth every sleepless night.

Insulin Pump Comparison, comparing insulin pump functions, and pros vs cons.


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

All things frustrating and encouraging about Type 1 Diabetes