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 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.

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.

 

All things frustrating and encouraging about Type 1 Diabetes