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.
