The Daughter I Love with Diabetes

Lucy is at art class. I have an hour to kill. While Lily-Anne stares, fixated, at episode after episode of Clifford the Big Red Dog (whom she identifies as blue when asked – so much for educational TV), I sit searching the Internet for writing prompts; my attempt at freeing my mind from what seems to be interminable writers block.

            Do I invent a monster and describe it? Convince someone why music or art are important to me? Or do I make-up a tall-tale, exaggerating an actual event? None of the hundreds of options touch me or inspire me. Not even depicting the zombie apocalypse jump-starts my imagination.

Instead I choose the mindless act of browsing Facebook, hoping to find something new, different, interesting, or inspiring. Surprisingly, it is the American Diabetes Association’s post asking, “Who do you love with diabetes?” That gets me thinking, and writing.

My 2-year-old daughter, Lily-Anne, was diagnosed with Type 1 Diabetes when she was 19 months old, just one week after we finalized her adoption. A positive diagnosis of diabetes initially seemed like a cruel joke on a child who had faced challenge after challenge since the time of her conception.

Born into the foster care system to a mother who tested positive for drug use during labor, Lily-Anne spent the first 6 months of her life in the supervised care of her birth mother, who was physically, mentally, and emotionally incapable of caring for her. Three months prior to arriving in our household, Lily-Anne was being housed with her birth mother at the Lund Center, a home for troubled mothers.

When we received Lily-Anne, at six and half months old, she was developmentally delayed by several months. She was also very flat, showing few emotions and even fewer expressions. She seemed to have resigned herself to an unhappy fate. I remember standing over her one day, tickling her toes and raspberrying her belly in an attempt to coax a smile or a laugh from her. Instead of reacting with joy, she sat staring at me with little expression on her face. Horribly disappointed and worried that she was, somehow, permanently damaged by her short past, I began to cry.

It took time, love, and a lot of support, but Lily-Anne did, eventually, come out of her shell. With the help of occupational and physical therapists she caught up developmentally and after a year of being unofficial parents we were able to officially make her ours. We celebrated both her adoption and baptism with friends and family over the course of a long weekend. Never did I imagine that a week later all the joy we felt adopting her would quickly turn into terror when she became seriously ill.

I knew, on a gut-level, that Lily-Anne was diabetic even before her diagnoses. Two weeks before her adoption, I had expressed concern to her doctor about her waking from her naps shaking with tremors. I had assumed that she was suffering from low blood sugar during these episodes. My assumptions were confirmed when I would feed her immediately upon waking and the tremors would stop.

My concern progressed to worry when the weekend before her diagnosis she began having unquenchable thirst, even waking in the middle of the night begging for water. She was simultaneously leaking through diapers every one to two hours. Knowing that both were signs of diabetes, I intended on speaking with her doctor about them during my scheduled doctor’s appointment that week. However, it was the onset of vomiting and lethargy that drove me to the doctor before our scheduled appointment. Worried and somewhat frantic, I asked the doctor to test her sugars resulting in my suspicions being confirmed and a positive diagnosis of diabetes. After hours in the ER, and days at Dartmouth in the PICU, where we were given a crash course in the care of diabetes, we were sent home to begin life in a whole new way.

I spent a lot of time crying the first four months after Lily-Anne was diagnosed. I cried from exhaustion (waking up at 2am every night was physically draining), from frustration at her constantly fluctuating sugars, and from grief for the life we had hoped for her, the life we had now lost (a spontaneous life, unhindered by a strict schedule and worry about every crumb that passed her lips), and the very uncertain future that now existed for Lily-Anne’s health.

It has been a little over a year since Lily-Anne was diagnosed and much has changed, not only in our attitudes towards her disease, but also in the management and therefore ease of her disease. I no longer cry for the changes her disease has ushered in, I personally have found an inner strength I didn’t know existed. However, I will admit to having moments of jealousy when I see parents happily feeding their children snacks without thought to the time, number of carbs, insulin delivery, or affect on those little bodies. I do not have the luxury of keeping my child happy with snacks so that I can leisurely browse through a store. We have to maintain a fairly strict meal schedule in order to prevent lows but our day now revolves around those meal times.  We now test Lily-Anne two times a night, once at midnight, and once at three am, but I no longer look at these testings as an exhausting burden (at least not all the time) but rather part of the routine necessary for the health of my daughter.

Upon initial diagnosis, Lily would fight and scream at being tested and receiving her shots.  Now before being tested herself she likes to test her dolls, declaring, “91, perfect.” Lily-Anne has gone from receiving 4-5 shots a day to being on a pump that painlessly delivers her insulin continuously and when needed at meals. She is coming to know when her sugars are low, and what to do to treat those lows. She is a happy, healthy, little girl, who knows no other life than one with diabetes.

I both look forward to and dread the day Lily-Anne is old enough to manage this disease herself.  I pray that we can provide her with a normal life, one full of fun and fitness. I pray that she never sees herself as different, awkward, or incapable because her diabetes. I pray that the rebellious teenage years pass by quickly and without consequences to her health, both mental and physical. I pray that she understands the importance of healthy living so that the long-term side effects of this disease fail to affect her. I pray that she surrounds herself with people that support her endeavors to remain healthy. But mostly, I pray the same prayer all parents pray for their children, that she should live a long, healthy, happy, and meaningful life. One in which she feels loved and accepted despite her disease.

Homesick

           I am homesick. Extremely homesick. I miss my friends and family. I miss winter in all its white glory. I miss my rickety old farmhouse that oozed charm and character. I miss living in a place that aligned more closely with my values and morals. I miss the glory of the mountains. I even miss the local supermarket, which offered endless choices. But most of all, I miss feeling connected.

            I am no stranger to moving. I have now lived in five different states, all located in different regions of the country. Each with its unique culture. Every time I moved I left a piece of myself behind, but also grew as an individual, becoming a better person along the journey. However, none of the previous moves hit me as hard as this one has. In every other place I have lived, I made new friends almost instantaneously. I had school, work, or other activities to keep me occupied

and feeling remotely fulfilled.  I felt a sense of belonging. Even in Baltimore, a place I was not particularly fond of, I had friends, family, and connections.

Four and half months into our move to Tampa and I have met only two or three people, none of whom I would call friends. I attend story time and a moms and tots group once a week for the mere sake of getting out of the house. The conservative religiously based culture is at odds with my beliefs and morals. I feel stifled and extremely alone.

In a week I am returning to Baltimore and Vermont. I will spend time celebrating Lucy’s Birthday and the holidays with friends and family. I am excited, and petrified. Excited to once again feel connected, loved, and free to express myself. Petrified that the trip will only heighten my homesickness. Meanwhile, I will continue to struggle and pray that both my physical and emotional state are temporary.

The Sap That I Am

I am a hopeless sap. I sob uncontrollably during movies (even during Disney movies), TV shows, You Tube videos and while reading books and listening to music. My inability to control my emotions amuses both my eldest daughter, Lucy, and my husband. Lucy often stares at me bemused and exclaims, “You’re going to cry, aren’t you, Mom?”

While browsing Facebook one day this week, I ran across a video of a cancer survivor meeting his bone marrow donor for the first time. As the two strangers clung to each other weeping, I sat fixated, tears streaming down my face. After blowing my nose and wiping my eyes, I began to reflect on my inability to keep it together when faced with heartwarming or heartbreaking stories.

I can’t say that before the birth of Lucy I avoided emotional outbursts, I have always been touched by stories regarding the human condition. However, it wasn’t until the birth of Lucy that every love story, success story, or heartbreak affected me so severely.  Hormonal changes, combined with the overwhelming responsibility for another’s physical, emotional, and mental well being have taken their toll on my own emotional and mental well being.

Watching or reading about individuals who have overcome unbelievable odds, individuals who freely offer up their bodies, souls, and lives to others, often complete strangers, has made me realize how exceptional, brave, and loving human beings can be, and how unexceptional, cowardly, and cold I truly am. My tears, therefore, are born out of disappointment and anger at myself for my inability to overcome fears, insecurities, and heartbreak. Heartbreak that is far less dramatic than what some individuals have experienced and conquered.

My tears, therefore, will continue to flow as long as human beings continue to exhibit exceptional love, bravery, and resilience. My tears will continue to flow until the war that rages inside my rebellious brain decides upon peace. And the next time Lucy asks me if I am going to cry I will respond with a smile, a sniffle, and a tissue to the nose.

Rabbit Droppings

           For the last hour Lily-Anne has been sleeping peacefully in her crib, while I have spent the last 20 minutes folding laundry. The ten minutes before folding laundry, I spent deleting and merging contacts on my phone. My morning was spent walking and cleaning the garbage out of my car. My early afternoon was spent feeding Lily-Anne lunch.

I look around at a house taken over by toys. Toys that need to be neatly tucked back into their respective bins. There are still boxes to be unpacked, others whose contents need to be sorted, stored, or given away. I still have doctor’s to call, appointments to make, bills to pay, and a plethora of paperwork to muddle through. I am overwhelmed by the amount of work that presents itself each day. I am overwhelmed by exhaustion and frustrated with my lack of motivation and energy.

 Not only do I seem to lack the physical energy to tackle these daily tasks, but I also seem to lack the mental and emotional energy. My tears begin to well, as my list grows longer. I tell myself to complete at least one task a day in order to feel some sense of accomplishment, the laundry that had been sitting on my bedroom chest was today’s task, and yet, I feel like I am taking one step forward two steps back as I look at the three laundry baskets waiting to be washed, folded, and stored away.

I am, naturally, a very organized individual. The chaos that children rein on a household causes frustration, anger, and ultimately tears. I tell myself to say, “Fuck it!” to let it be as it is, since cleaning is a losing battle. For a short time this seems to work, but then I step on a pony or trip over a Barbie and become so irked that I shower the wrath of God on my children in the hopes that their habit of dropping toys like rabbits do turds will subside. It doesn’t.

Lily-Anne is now calling my name, wanting to be plucked from her crib. Any hope of accomplishing a second task is dead because Lily will proceed to walk behind me, undoing all that I do. I am taking a deep breath willing myself to stop writing, get up from my chair, and continue on with my day despite my lack of productivity.

Change: It Does Not Always Sit Well, Especially With Lucy

I am sitting in bed listening to the hysterical laughter of my daughter, Lucy, and the witty banter of my husband. Twenty minutes ago, I was laying in bed with her as she sobbed, “I want to go home!”

Lucy is not one that does change well. When she was 20 months old we relocated from Maryland to Vermont. I did not think that, at twenty months, the move would affect her much. Surprising to both my husband and I, she asked once a week for six months when we would be returning “home,” meaning Maryland. It took a lot of explaining and a room makeover before I convinced her that Vermont was her new home.

Today, she has no recollection of ever living in Maryland. Home is now Vermont. Home is our big falling down farmhouse.  Home is our half an acre of land that houses various types of rope swings. Home is the park, a two-block walk from our front door. Home is her friends, her school, and her Mi MA and Pop Pop.

Despite our efforts to highlight the positive aspect of living in a new place, with new adventures to be had, Lucy misses her home. And because she misses her home she is having a hard time accepting and loving this new home. She grieves, and each time she melts down, sobbing for the familiar, my heart ties itself in a knot.

Thank God for the wit of my husband, who can bring a smile and produce a laugh during some of the worst times. He handles her grief much better than I do.  He knows that potty and physical humor will make Lucy laugh even in the saddest of times. He is currently twisting the title of The 500 Hats of Bartholomew Cubbins by Dr. Seuss into a variety of toilet-oriented titles. Including The 500 Farts of Prune Juice McGee.  This one in particular turned her gut wrenching sobs into breathless belly laughter.

Things are quieting down now. I have placed a pad complete with pillow blanket and stuffed animal next to my bed in the hopes that when Lucy migrates from her bed to ours in the middle of the night (as she has done every night since occupying our new house) she can rest peacefully and comfortably far from the fears and worries that moving has created.