I want to tell you about my hero. Her name is Journey Bloom. She is 4 years old and she is my daughter. We nearly lost our gorgeous little girl when she was just 1 1/2 years old, and, since the date of her diagnosis, February 11, 2010, absolutely everything
has changed in our lives--some things for the worse, but still plenty for the better. Somehow, the four of us have made it to where we are today--knit closer together as a family, more determined than ever to support and love each other. This is the story
of our Journey.
"The heartbreaking diagnosis for Journey was swift, grim and permanent: Type 1 Diabetes. At just 21 months old."
Since the day she was born, Journey was a happy, easy-going baby and the picture of perfect health. From the moment we laid eyes on her, she became everything our world revolved around. As her personality developed, we learned Journey was a firecracker.
She was vibrant, hilarious, energetic and always lit up every room she entered.
Following the birth of our son in January of 2010, Journey's disposition quickly switched from bright and cheerful to sullen and quiet. As any parent would, we thought having a new brother around was proving to be a difficult adjustment for her. However,
when our son was just 2 1/2 weeks old, Journey became very ill with what we thought was the first flu of her life. She nearly stopped eating and began breathing heavily. She wouldn't play or walk around too much and would just stand in place screaming or laying
on the floor crying. We were perplexed by her complete change in behavior but thought we would cure her terrible flu by cuddling with her on the couch for a few days. We were convinced that soup, crackers and a little extra attention would work wonders towards
her full recovery from the flu. After two days spent resting on the couch, however, Journey's breathing became intensely laboured, and she stopped moving completely. My husband, Mike, called our pediatrician in a panic and was told to bring her in immediately.
Upon her arrival at his office, Journey's pediatrician took a quick look and instructed Mike to drive as fast as he could safely make it to the hospital, saying there was no time to waste in waiting for an ambulance to arrive. I will never know how he held
it together, but miraculously Mike had a clear head through the chaos and managed to make the drive. Journey's pediatrician had called ahead, and the hospital was waiting to rush her into the Pediatric ICU.
The heartbreaking diagnosis for Journey was swift, grim and permanent: Type 1 Diabetes. At just 21 months old.
Those days and nights in the ICU were the darkest of my life. Little Journey was in a life-threatening state of diabetic ketoacidosis, the result of her body being unable to burn off the sugar accumulated in her veins. Her pancreas
no longer had the ability to produce insulin, and, starved for energy, her body had started to rapidly consume her muscles and fat out of desperation. This self-consumption process released "ketones", a by-product which is poisonous and fatal in high quantities.
I just held her limp little hand for hours at a time, not wanting to let go, while an artery line, IV and various tubes were running out of her tiny body. We waited in silence with our unresponsive baby for any progress update from
the stream of ICU doctors and nurses bustling back and forth, over and around our daughter. In the back of my mind I was vaguely aware that I had a newborn son, who, at just weeks old, was being passed around amongst a group of close friends. However, we were
unable to care for him while our daughter's life was on the line. During the first 24 hours, we were told that the overall outcome was uncertain if she even survived. The team worked hard to prevent swelling in her brain but was initially unable to decipher
what additional side-effects or damage might already have been caused by her critical condition.
With incredible skill and diligence, the doctors and nurses stabilized Journey within the first 48 hours. She remained in the ICU for a week, gaining back little bits of strength every day, though she was still too weak to even sit up unassisted for months
afterward. After one week in the ICU, she was transferred to the children's ward for another week. When we were finally discharged from the hospital, we had to visit daily to undergo Type 1 training and management courses where we were bombarded with facts
and instructions on how to care for our daughter for the rest of her young life. When we were finished training classes, overwhelmed, we took our little girl home, fumbling with needles we had very little practice using, lacking confidence in knowing how much
insulin to inject and when. In-home visits from a nurse were scheduled twice a day for the first week and then we were on our own.
"Type 1 Diabetes is a chronic autoimmune disease that is unpreventable, irreversible and incurable."
I will be able to never convey the pain in my heart as a mother, armed with the knowledge that I had to approach my 21 month old daughter with a needle or lancet in my hand up to a dozen times a day, every single day, just to keep her alive. She was too
young to speak at the time of her diagnosis, but the fear in her eyes spoke even louder than her cries every single time she spied us pulling the syringes, lancets and testing strips out of the drawer.
There is nothing we could have done to prevent this from happening to our precious little girl. Type 1 Diabetes is a chronic autoimmune disease that is unpreventable, irreversible and incurable. Type 1 Diabetes is fatal unless treated with insulin, thereby
requiring dedicated lifelong monitoring, precise calculations, and the persistence and ongoing support of the child's caretakers along with a knowledgeable medical team. Blood sugar that dips too low can cause a seizure or loss of consciousness. But blood
sugar that is too high can cause a multitude of serious long-term complications or lead to diabetic ketoacidosis which can result in a coma or death. The delicate 24/7 balancing act is continuous, stressful and tricky, with a high learning curve. There is
never a break or even partial day off from the cruel reality of Type 1.
Yet, for the sake of our daughter, even in our complete state of shock, we felt our best option was to confront the diagnosis head-on, learn the facts about the treatment option that would give Journey the most ideal quality of life, and proceed from there.
We quickly learned from our medical team that, though costly, an insulin pump was hands-down the smartest decision we could make for the present and future health of our daughter.
The pump itself is a sophisticated $7000 piece of life-sustaining medical equipment which is costly to operate every month (with the cost of infusion sets, cartridges etc), and it is recommended that it be replaced every 4 years. This, in addition to the
high monthly medical bills for testing strips, lancets, insulin and more, would be a significant financial burden for any family. We were trying to juggle a toddler, a newborn, and a business startup a few years under development but not yet launched which
meant the cost of the pump was going to be a serious stretch. Luckily for us, while we were still in the ICU, our dear friends Ryan and Lianne Hastman created and organized a fundraising campaign to raise money for an insulin pump for Journey. We were truly
amazed and humbled by the generosity of friends, family, and even strangers who had the pure kindness in their hearts to donate to Journey's fund so we could purchase an insulin pump for our little girl. Under the guidance of Ryan and Lianne, the fundraising
goal was quickly reached.
Almost seven long months after diagnosis and learning to survive with syringe injections, Journey's endocrinologist gave us the go-ahead and approval needed to proceed to an insulin pump! We again underwent extensive training at the hospital and Journey
began life on her insulin pump in August of 2010. The transition from multiple daily injection therapy to the pump was nearly as life-changing as the initial diagnosis itself. Without exaggeration, the pump has improved Journey's quality of life (as well as
ours!) 100%. The pump provides a great deal of lifestyle flexibility and, most importantly, allows for precise control of her levels. This results in long and short term health benefits, greatly decreasing her risk of Type 1-related risks and complications,
as well as various organ damage/failure down the road. We strongly feel the pump has given our joyful daughter back to us, daily and in the immediate future, as well as 50+ years from now.
"She is the most vibrant, cheerful little girl who loves to dance, sing and make friends everywhere she goes."
So what does daily life look like for Journey? Well, now that she is on her insulin pump, Journey receives about 5-10 blood tests in her fingers a day, where we read her blood sugar and correct with insulin or treat with food as necessary to keep her blood
sugar within an ideal range. Every bit of food that she eats is measured and weighed, counted for carbs minus fiber and then inputted into her pump. Nothing is ingested without evaluating the nutrition information, and, for every carb she eats, she is given
a bolus dose of insulin to account for and cover the food in her system. Journey's pump calculates and factors highly complex equations that vary throughout the day such as insulin sensitivity, insulin to carb ratios, how much insulin is currently active in
her system, and so on, thereby allowing for optimal and precise management. Her pump is about the size of a smart phone and is worn around her waist on a belt pack 24/7. From her pump is a tube running to an infusion set inserted in any fatty tissue we can
find in her thighs or buttocks region. Every 3 days, we rotate the site of her infusion set to ensure a stable insulin delivery site and to prevent infection. This is done with a handheld cartridge containing a long needle that inserts the cannula of the infusion
set subcutaneously. At her age especially, this is never an easy procedure.
To date, Journey has received thousands of syringe needles, blood tests in her tiny fingers, and infusion set needles for her insulin pump. She has spent weeks in the hospital, had her first and hopefully last seizure with a subsequent ambulance ride, and
has not complained once. Not one single time. She has been scared and there have been countless tears, but she has not complained or felt sorry for herself, nor has she ever refused a test or attempted to rip out her pump. Instead, she is the most vibrant,
cheerful little girl who loves to dance, sing and make friends everywhere she goes. She is remarkable and inspiring in every way. I cannot look at her without thinking how absolutely blessed I am to have her in my life and how privileged beyond words I am
to be her mother. Every day of her life, she is a miracle. Journey is a gift from God, given to us exactly as she is; I could not ask for a more wonderful daughter in the entire world.
Journey has made us see the good in every situation and the truly precious gift that life is every day. We face challenges with a new determination and strength. We are grateful for little things and choose to always search for the positive. This entire
experience with her has forced us to rearrange our priorities and thoroughly re-evaluate our goals in life. And we have become better people for it.
Journey's tiny, calloused hands tell only the beginning of her story of survival. The marks that linger for months on her body from her infusion sets are her battle scars and bring with them an immense pride at the constant strength and courage of our daughter.
Every day is a challenge and a struggle, but also a victory. Each time we have to make our daughter bleed for another test or give her yet another needle, it is the most honest and sharp reminder of what a gift life is--and, in some circumstances, what you
must deal with to preserve and hold on to that delicate gift.
Following Journey's diagnosis, we felt an unbelievable amount of support from friends and strangers alike. One of the couples who cared for our newborn son while we were in the hospital took the time to shoot professional baby photos of him so we wouldn't
feel we were missing out on his earliest days. We received countless letters of love and encouragement that helped us get through the shock and long months of adjustment. Perhaps the one that repeats over most in my mind was from my friend Leah, whom I had
not seen in many years, yet who made the effort to donate to Journey's fund and to send so many uplifting messages. Leah wrote: "...I'm SO happy she got her pump!! I feel like her name is so fitting. That her life IS about the journey God has taken and will
continue to take you on and always be faithful to her, and to you. And that despite this, she will bloom." (Thanks Leah!!) In reflecting on the course of everything that has happened in her young life, it's true, Journey Bloom's name could not be more fitting.
Giving Back
With absolutely no pressure or obligation, it would mean so incredibly much if you are ever able to fund-raise for or donate even a small amount to the
Juvenile Diabetes Foundation as they continue to make advancements for Type 1 Diabetics like Journey Bloom.
While working towards a cure, they are also developing a "closed-loop" insulin pump that can continuously read blood sugar and make adjustments immediately. The result will be an external, fully automated artificial pancreas! Every dollar makes a positive
difference in their work and search for a cure to help children like my daughter.
I want to sincerely thank you for taking the time to read little Journey's story. She truly is our Incredible Journey. We hope she has inspired you with her strength and bravery. Wishing all of you health, happiness and so, so much love!
xoxo
Bean Benson
Keep up with Journey Bloom's daily adventures on her photo blog:
TypenOne.com
A few facts about Type 1 Diabetes (NOT to be confused with Type 2!)
- Type 1 is an autoimmune disease and is NOT related to diet, lifestyle, or weight
- Type 1 is NOT caused by consuming an excess of sugar or carbs
- Type 1 is NOT preventable
- Type 1 is NOT curable
- Type 1 is NOT reversible
- Type 1 cannot be managed with pills, diet or exercise
- Type 1 is FATAL unless managed daily with insulin syringe injections or insulin pump therapy
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Background: photo by meanbike