Change is rough, and often we are forced into it. Going through it is always a struggle, and if given the choice most of us would avoid it. So when it is thrust upon you, how do you deal with it. Well, poorly at first, I remember the days and nights filled with tears, frustration and otherwise. I remember combing through what went wrong, how did my son get an autoimmune disease?
Those feelings get highlighted anytime I share Carter’s diagnosis with anyone new. Oddly, this is especially true when the audience is of the medical profession. It made me realize how encapsulated the endocrine system truly is.
The most interesting thing about having a child with Type 1 Diabetes, is that change doesn’t end with diagnosis. Change comes frequently, and most times with an angry vengeance. Routine is not a word that is used when speaking of how you manage Type 1 Diabetes. I find that the majority of the changes we experience lately happen when Carter is sleeping.
When everything is winding down, and night draws in, Diabetes releases the gamut of all its tricks. This consists of slamming my son into a 46 blood sugar, or throwing him into a 350 blood sugar. Through exhaustion and sadness we have to be ready at the drop of a hat to change our current process, our sleep schedules (though after diagnosis sleep is almost non-existent).
We have to welcome change, and the majority of the time, the change isn’t good. It’s more trauma, more sleep deprivation, more frustration, for both the parent and especially diabetic.
Realizing that the change you experience today, may not be the same change you struggle with tomorrow can be daunting, or a relief. Being able to adapt is one of the most important parts of managing diabetes. Finding ways to get through each day, some days is your biggest accomplishment. Realizing that change is imminent and in order to save what ever sanity you have left, you have to learn to roll with it.
One of the hardest, yet most rewarding tasks I completed this year, was ordering Carter’s Medical ID bracelet. It took me a while to be able to even stomach ordering it for him. Though I had accepted Type 1 Diabetes, for the most part, somehow ordering the worn declaration was to difficult for me.
I finally set aside my feelings and found a retailer online and placed the order. Once I hit send on my order, I cried. I find it captivating how many actions are tied to emotions surrounding my son’s diagnosis. Maybe it’s because I am still so raw. Maybe it’s because my hand was forced and I don’t take well to losing control.
One thing I have realized this year is the importance of knowledge. Knowing, truly is half the battle. God forbid anything were to happen to me, and Carter needed assistance, who would tell the rescuers he is a Type 1 Diabetic? It was another moment when I realized this isn’t about me or my feelings, it’s about my son.
When the bracelet arrived, I unwrapped the package, placed it on Carter’s wrist, then unwrapped my peace of mind from sadness. I know Carter will adjust to wearing it, and I will have complete peace of mind, especially when he starts school and is not always within arms reach of me. Letting go is so difficult, especially when you have a child whose physical wellbeing are dependent on you, 24/7.
Transition, though difficult, creates better boundaries, more confident people, more positive interaction, and a comfort within oneself that is only achieved by trudging through the pain and disappointment that has been handed to us.
Today’s the day, November 20, 2014, exactly one year after Carter was diagnosed with Type 1 Diabetes. For a full year, I never really knew how I would feel today.
This time last year, I wished I was here, a year into things, I naively thought things would somehow be easier. In some ways they are, but in others everything is still the same……difficult.
My biggest fear, this time last year, was the shots. I am so grateful to have adjusted to that. Dosing out insulin doesn’t terrify me anymore, it certainly has become second nature. But the frustration associated with Type 1 Diabetes is still there and I believe will be forever. Learning how to expect the hassle and not get flustered when it arrives is the key.
As a mother, being prepared for anything was a characteristic I had to learn when my first-born arrived. Being prepared for everything when you have a child with Type 1 Diabetes is a whole different thing entirely. Even with everything done the same way each and every hour of every day, we always live in the “what if.”
However, as I reflect today, that biggest theme is gratitude. I watch my son today, running and jumping, laughing, and full of life and realize that last year, as I sit sobbing in a PICU room, that this is what I longed for. I longed for the day when Type 1 Diabetes management became part of our day, and we have arrived there.
Self doubt has left me alone for a while now, and I am more confident in my ability to care for my son, I watch my son taking more and more ownership of his care and where my heart hurts sometimes because of that, I am comforted by his acceptance and knowledge of how important proper management is.
I sit here, exactly one year after my world caved in, and instead of living in the moment I am able to look to the future. What I thought would break us, has pushed us closer together, highlighted what gratitude really means, and proven that anything you strive for can be accomplished.
So it is with a happy heart that I say happy one year anniversary to my son, it’s happy because we have made it through the roughest year of our lives and have come out on top. My son, who is the bravest, most tenacious, happiest boy I know. I am so proud to call him my son, and am so lucky to have my daughter who helps me care for her brother, and comforts me when she sees on certain days it becoming too cumbersome.
Type 1 Diabetes is an invasion, but with hope and love, and patience, the learning curve is obtained, and life carries on.
I honestly don’t know how we arrived here. One year into my son’s diagnosis, it feels like just yesterday that we were in the hospital desperately trying to hold it together, watching our son connected to every machine, fighting for his life.
Having Carter diagnosed in November, which is Diabetes Awareness Month, makes this 1 year anniversary that much more complex.
This year has been a whirlwind of activity, and learning, and monitoring. When I think back to his time last year, I knew nothing about Type 1 Diabetes, and today I know more about this disease that inflicts my son and tries its best to push my family around, on an unwanted intimate level.
This year, I find November to be a double-edged sword. I am grateful for the awareness and the advocacy, I do my best to advocate on behalf of my now two-year-old son, yet I also find my heart break a little more each and every day throughout November. Maybe it is because the wound is still fresh, and lately all I can think of is what was happening this time last year.
These memories I know will fade, and I will be able to steadfastly view our accomplishments, but these days, those accomplishments are shrouded in pain.
I remember watching my son suffer for a week thinking he was fighting a virus, getting thinner and more gaunt with each passing day. I remember how small he looked in the huge hospital bed, barely visible under all the wires and life support he was connected to.
I remember the last look my son gave me was pained, and though he was only 17-months-old and couldn’t speak, his eyes screamed help me. I remember rushing home to pack our bags, and hearing the helicopter that carried our critical son across the sky to the children’s hospital, watching my then 4-year-old daughter run to window to yell goodbye to her brother, and feeling so helpless.
I remember the PICU, and the 3 days where Carter’s future were classified under “maybe.” Being told by the nursing staff to go across the street and get some rest, and my husband and I refusing to leave our son’s side. I remember finally being moved down to the pediatric floor, and the expectations I had, expecting Carter to spring out of bed and run around, and devour food. I still recall the devastation I felt when that didn’t happen.
I remember having to place my son in a wagon in order to get him around while in the hospital, since he had a central line that started at his groin and went up to his heart, that once removed hindered his movement for 2 weeks because of bruising and pain.
I remember with each minute of training, watching what our life used to be, becoming a distant memory. I recall wracking my brain for what we did different with Carter than Ashleigh, that inflicted him with this, even amid the proof and reassurance of the endocrinology team that we didn’t do anything wrong.
The feelings of helplessness, failure, anger, frustration, fear, exhaustion, I remember all of these so clearly. Watching my son squirm and cry when someone with scrubs would walk into the room, having to push my fear aside in order to comfort my son.
I remember leaving, after a week in the hospital, and watching Carter’s elation at life being what it used to. Looking out the window and excitedly waving goodbye to the building that tortured and poked him multiple times a day for a week, and then arriving home and having the torture continue.
But having been through all of that, I remember about a week after we’d been home and “adjusted” to our new life, I distinctly remember my son’s laughter which I hadn’t heard for well over a month. I valued it more than I had before.
I realize that without that week of hell, and a crash course that overwhelmed me, I wouldn’t have my son. So instead of having to rely on memories, I am blessed with the joy of watching my son persevere.
So while the month of November has been hard on me this year, I realize the importance of the advocacy, and the educational opportunities for all through the stories of sorrow and tenacity.
But most of all, I clearly see how God protected my son and my family through this 2 week span in November of 2013, and kept us safe, throughout the ignorance that shrouded my judgment and kept my son alive, and guided me to get him the help he needed to survive.
When living with Type 1 Diabetes, whether you have it or are the parent of a child who lives with it, there is a fine line you walk between fake positivity and realism.
There is a silent expectation that anyone afflicted with the task of managing Type 1 Diabetes must remain upbeat, and be grateful that this disease is manageable, where there is truth in these statements, there is also a pressure associated with the plastered on smiles and almost required denial of the hardship that Type 1 Diabetes management carries with it. I feel there is a negative stigma attached to people who can openly discuss how much Type 1 Diabetes sucks…….most days.
I find the link between this negativity can be traced to people who have never lived a day in the life of a diabetic, and who assume that cancer would be a worse diagnosis. Each disease carry’s with it horrible days, devastating hardships, and diseases shouldn’t be compared to find the worse situation. It’s unfortunate that the comparisons between Type 1 Diabetes, Type 2 Diabetes, and all other diseases get tossed around. Furthermore it’s frustrating that in the moment of frustration, most often brought on my the lack of control that becomes evident almost hourly when managing Type 1 Diabetes, people who don’t understand what all goes into diabetic management are the first to speak about their disdain for the complaint, and how grateful the diabetic community should be for the advances of medicine, etc.
I want to make perfectly clear how grateful I am for the advancement of medicine, I am indebted to those who have found ways to keep my son alive through the advancement of medicine, science, and technology. Yet to live in the glass house that this is enough to properly manage Type 1 Diabetes is unrealistic. Even with all the technology; a Dexcom CGM, a Pump, proper management of Type 1 Diabetes involves a continual vigilance.
There isn’t a minute of any day that goes by where Type 1 Diabetes isn’t ruling the day and it’s activities. I fondly remember the excitement attached to outings, pre-diagnosis. These days, packing the supplies and snacks needed for the “what ifs” that happen 90% of the time is exhausting. Tack on the through the night checks, the fixing of the low blood sugars, fixing of the high blood sugars, constant blood checking, monitoring of exercise, assessing what carbs have actually been ingested to cover the insulin that had been injected…….there isn’t a time where diabetes management isn’t the focus.
As a bystander, allow the grieving, even if the diagnosis was 5 years ago. One never really gets over the affliction that an auto immune disease carries with it. Be supportive, understand the need for advocacy, be OK saying, I don’t understand but am here for you. Most times we just need an understanding ear and a hug. The worry that is attached to Type 1 Diabetes, especially in small children, is real and never goes away.
“I hate that our son has diabetes.” These were the words that came out of my husbands mouth as he sat down on the couch last night. It was the first time that he actually talked about the effect this change in our lives has had on him. I glanced over and agreed, I feel as though the reality of this diagnosis has been weighing fairly heavy on me lately. I am still at that stage where I can think back to this time last year, the focus was on planning our daughters birthday and the joy that surrounded that. Not knowing what was brewing in my poor son’s body.
We hit our 11 month anniversary on Monday, October 20, and I wonder how long it will take for the 20th of every month not to carry with it the sting of sadness. It was nice to hear my husbands feelings on the matter, with our hectic schedules we don’t have the opportunity to discuss how he and I are effected by all of this. We spend our energy and time making sure that our children are coping, especially Carter.
For an instant it was a welcome relief to realize that I am not the only one carrying the burden of Type 1 Diabetes, and affirmation that being only a few weeks away from the 1 year anniversary of our son’s diagnosis, I am not the only one still angry. Continuing to remind myself that grief is different for everyone and that given the fact that I still don’t look upon Type 1 Diabetes with a comfortable recognition doesn’t mean I haven’t accepted the responsibility willingly.
There are many days I hate Diabetes, most days I do. Me and Diabetes are not friendly by any means, we tolerate each other because we have to. If given the opportunity I would do away with Diabetes and make it so that he couldn’t pick on an innocent child ever again. But for now we must remain in survival mode when it comes to Diabetes, and when frustration strikes we push forward and fight back harder.
No one more than Carter, who endures the pokes and blood draws, and burning of insulin injections with a bravery I could only hope to have. As Diabetes awareness month continues through November, I am made aware of how many people are afflicted by this disease that is really so difficult to manage.
I love the positivity that the community has as it pertains to the manageability of Type 1 Diabetes, but at the end of the day, forgetting to release the negative isn’t the answer. There are many, many days when living with and managing this disease are exhausting, and no matter what you do, there is always an element of failure attached to certain outcomes.
Embracing the negative realities while projecting positivity can be a delicate and difficult balance. There is so much pressure to promote normalcy, which I believe is easy when children are young and believe that everyone gets poked in order to eat, it’s when they get older and realize that they are different that the true fight may begin.
For now, I am geared toward allowing my son to have days when it’s OK to say Diabetes sucks, but when we have good days, with amazing numbers and wonderful outcomes, we celebrate those and live as long as we can in those moments. Diabetes is hard and horrific, but in order to have a healthy boy, I would sacrifice anything in my life.
I’ve never been reliant on science. Faith presided easier for me, and where faith is still at the helm within my life, I have become more dependent on science in the past year then I ever imagined I would.
Finding a way to trust in science and technology to keep my son alive is something I never was prepared to do, yet being thrown into the situation of having a son with Type 1 Diabetes, I have little choice. I trust that the blood glucose monitor will deliver the most accurate results every time I poke my son’s finger and milk the blood out. Beyond that, I have been forced to depend on a lab derived substance to provide for my son, what his body decided it can’t.
Where I am grateful for these advances in science, and the freedom that my diabetic son is able to have because of the scientific advances we are lucky enough to have access to, most times I feel trapped, almost hostage to the science.
The emotions come and go in waves, one day a cure is around the corner and my heart skips a beat at the hassle my son will finally be able to leave behind, and a week later, there is another push back, an unforeseen delay. My heart sinks, and I muster up the strength to push forward and find a new way to walk hand in hand with Type 1 Diabetes, for the sake of my son and his health.
Everyday is a constant reminder to survive and not get my hopes up for fear of the disappointment soon to follow. This is when my faith kicks into overdrive, and I am reminded that science isn’t the end all be all. I have faith that my son will always be protected, I have faith that I will always know the proper steps to take in order to help my son traverse this shaky ground that is Diabetes. I have faith that I will find peace in the midst of the storm.
I am hopeful for the cure I pray for everyday, not just for my son, but for all the Type 1 Diabetics who have been living with this horrible disease for years. Type 1 Diabetics are so deserving of a cure, and I am stuck wondering, given all I know now, if I would always question the cure. When would I be content to not check Carter’s blood through the night, would I ever fully be able to trust that my son now, with the help of science, finally have a “working” pancreas?
This is where faith again fills the gap and helps me, when the day comes and we are faced with relying on a cure to maintain my sons health, I will get used to that new routine as I have this past year with Carter’s insulin regime.
Learning to trust technology has been difficult, but I know that if it meant a cure for my son I would be able to place my trust in anything that will alleviate the hassle that my son goes through multiple times a day, all just to be able to eat and stay healthy. I am grateful for the dedication that scientists, parents of T1 kids, and organizations like JDFR and The American Diabetics Association have made in order to advance a cure for our children. A cure is so desperately needed and would be the beginning of a new life for so many.
All things frustrating and encouraging about Type 1 Diabetes