Diabetes Love Letter: An Ode to Mandi’s Late Parents

By Mandi Franklin

To my late parents:

It was the winter of 1990 and I was spending the week at my aunt and uncle’s house while my parents were chasing sunsets in the Caribbean. I loved sleepovers at their house – we would play “grocery store,” paint my fingernails, and stay up late.

This time was different…

“She’s drinking so much water. She can’t seem to quench her thirst,” my aunt said to my mother when she called to check on me.

I was so thirsty that I would climb on top of the bathroom sink and gulp water from the faucet like a parched cat. My aunt and uncle knew something was wrong.

Photo credit: Mandi Franklin

My parents caught the next flight home and I was rushed to Sinai Hospital in Baltimore, Maryland.

This is when the perfect world we once knew changed for me and my family.

“She has juvenile diabetes and we need to give her insulin,” explained the ER physician to my parents. Imagine hearing that your little, previously healthy 3-year-old now has a permanent disease that will need to be managed with multiple fingersticks and numerous injections daily.

Confused. Angry. Sad. Guilty. Numb. These are things that I am sure my parents felt at this moment.

Over the next few days, we learned how to cope with my new life with the help of the medical team, nurses, dietitians, child life specialists, and of course family support.

From that day on, my parents vowed to never treat me differently and promised that I would live a “normal” childhood.

Photo credit: Mandi Franklin

Looking back, I admire them for how they tackled this diagnosis and disease. I never felt like I couldn’t do something due to my illness. I was able to dance, play sports, go on vacations, and have sleepovers.

I have been living with type 1 diabetes for 29 years. There are days when I want to throw in the towel and say “OK diabetes, you win.” The other days are just like yours, except with a few extra pokes and a special ability to count carbohydrates.

My parents taught me to live my life and never let my disease get in the way. Because of this, I do what I love and continue to chase my dreams.

In conclusion, don’t ever give up.

Thank you, mom and dad, for raising me to be a strong, independent, resilient, goal-crusher who just happens to also have type 1 diabetes.

Love you always,

Mandi

More about the author on her website and Facebook Page.

Source: diabetesdaily.com

Letting Go of the Way Things Were

This content originally appeared on Beyond Type 1. Republished with permission.

By Bonnie O’Neil

Familiar Territory

I was no stranger to type 1 diabetes when my son was diagnosed with the disease at age five. My sister has been living with type 1 diabetes (T1D) since she was sixteen years old, and my brother died as he was being diagnosed when he was just eight. I was born eighteen months after my brother’s death as the replacement for the child my parents had lost. I was born on the shadow side of grief, into a family desperately in need of hope.

When my son was diagnosed with T1D, I instinctively knew I had reached the end of an era and would forever mark time by Before Diagnosis and After Diagnosis. This disease was deeply personal to me and so I responded swiftly and deeply to its reappearance in the warp and weft of my family.

I was riddled with anger — at the disease, at God, at the universe. My fear — for my son’s safety and quality of life, and for the health of my other children — threatened to undo me. I discovered I had a deep need for control, yet control was more elusive now than ever before. I struggled with guilt, knowing T1D had passed to my son through me. I found myself experiencing deep jealousy, perhaps for the first time, over everyone whose life seemed easier, sweeter, less complicated than mine. Frequently, in that early season, my jealousy even turned to self-pity. I felt isolated and was constantly exhausted.

I learned about carb counting and sliding scales for dosing insulin. I learned about the effects of diet, exercise, and illness on blood sugars. I was prepared for how difficult T1D would be on my child, but nowhere in all the training was a forewarning about how hard it would be on me, his caregiver.

What we have been called to as parents of a child with T1D is hard and can leave us physically and emotionally drained. While it is my son who lives with type 1 diabetes, I discovered the disease also invaded me personally, and hasn’t left any single aspect of my life untouched or unaltered. Refusing to be ignored, it’s chiseled at the deepest parts of my being, forcing me to dig deeper for strength than I have ever needed to before.

T1D also seeped into every pore of my family, as I’m sure it has seeped into yours. It has brought additional challenges to my marriage. It has complicated my relationship with my son, as I struggle with being his mother and caregiver without being a hoverer. The weight of the disease has even affected my other children. Chronic illness is the great disrupter.

Releasing Control to Gain It

How can we hope to build emotionally healthy families in the midst of all the disruption that accompanies T1D? We must begin deep within ourselves as parents. We begin by recognizing our own pain and attending to it, rather than continuing to brush past it, hoping it will just go away.

Because it won’t.

If we don’t find healing for our unhealthy emotions, the muck will spill over and spiral out into the rest of our family. But, when we begin to tend to our own hearts, we create space for our wounds to heal, allowing the healing to spiral outward until gradually it touches every relationship within the family. Hope and healing begin with us.

The undoing of our captivity to fear and anger, mourning and brokenness, requires the relinquishing of our constant longing to live a different life. An easier life. A life where loving and care giving don’t hurt quite so much. To move beyond fear we must begin to accept what is. As long as we refuse to accept our new normal, fear will hold us in its grip. Acceptance allows us to face our fears, and once we face our fears, we can begin to deal with them. In accepting this disease, I acknowledge my son’s vulnerability and also my own.

But acceptance is hard, isn’t it? It requires us to do the difficult work of releasing control. Control is our need to influence and determine the outcomes of all situations affecting our life. Control is our attempt at ordering the world around us, and it’s our insistence that life conform to our view of how things should be. My son’s disease interrupted the carefully ordered world I had envisioned for my family. It shattered my expectations. It took away my control.

And when we lose control, it’s easy for anger to step in and take its place. We don’t like the unsettled feeling of being out of control. We prefer to walk on solid ground, yet this disease demands we embrace the shifting footing of uncertainty. I’ve learned though, that the only way forward is through the crucible of releasing control. To take hold of hope we have to release our lock-fisted grasp on the way we insist things should be. The way things once were.

A new hope can only be birthed out of our willingness to set aside our need for control, and to courageously begin to accept things as they now are.

This essay is a taste of the book Bonnie O’Neil is currently finishing writing for parents of a child with chronic illness. Through narrative and reflection, the book weaves a story of hope amidst the challenges of raising a child with T1D.

Source: diabetesdaily.com

Search

+