Experiencing Gratefulness

           I will never forget the first time I brought Lily to her endocrinologist here in Tampa.  Sitting in the waiting room, a woman and her daughter of 9 or 10 years old entered and sat down. The woman meekly smiled at me and, looking at Lily, who was 2 years old at the time, said, “Please tell me she isn’t diabetic.” I returned her smile and informed her that, yes, indeed she is. The woman looked visibly upset. Her daughter said, “I was just diagnosed 6 months ago.” We began to chat a bit. I told her that Lily had been diagnosed at 19 months old. She informed me that she was having a hard time with carb counting. She didn’t totally understand it. Before I had time to reply, the nurse called her and her daughter to a room. Our appointment proceeded as all endocrinologist appointments do. Lily’s weight and height were taken, her A1C was tested, and the doctor discussed areas that needed improvement. As we walked to check out, the woman and her daughter that were sitting with us in the waiting room were also exiting. However, the mother was visibly upset. Tears streamed down her face as she exclaimed, “I just want to get out of here.”  I wanted to tell her that it would get easier, that I too had been there, on the verge of tears, every day. I wanted to stop her and hug her to let her know that it would be all right. Instead I stood motionless and speechless. I regret my inaction to this day.

On our second visit to Lily’s endocrinologist, I encountered another mother and her daughter. A little girl around 6 or 7 who was bound to a wheelchair, unable to move, verbalize, or eat independently. The mother and I struck up a conversation after another patient expressed his dissatisfaction with the wait time. The mother informed me that she was at the hospital two to three times a week having her daughter’s blood drawn due to a series of complications, including thyroid issues and diabetes. She was disgusted with the impatience of the other patient, exclaiming, “You do what you have to for your child, even if that means waiting for some time.” I wholeheartedly agreed with her before the nurse called Lily and me.

Both experiences taught me a valuable lesson in gratefulness. Not only could my daughter be a lot worse off, like the little wheelchair bound girl, but I could also lack the emotional and/or intellectual capacity to care for Lily. Unlike the mother I met upon our first visit to the endocrinologist, I have never had a hard time conceiving the math required to take care of a diabetic child. Carb counting can be tricky and is often a guessing game, but today’s nutritional information makes it significantly easier.  I am grateful that, despite her disease, my daughter can lead a normal life. I am even grateful for the growth I have experienced due to this experience. I have found a strength I didn’t know I possessed and have dealt with situations that, in the past, I would have shied from or been unable to handle emotionally. I am grateful for my daughter and her disease.

Heat + Humidity = Hell

             Living in Baltimore, when Lucy was a baby, I used to walk with her six to eight miles a day. We would wake up, eat breakfast, and then head out for a walk to Starbucks and the playground. We returned just in time for lunch and a nap. After waking up from our nap, we would head out again. This time walking to Jody’s work to visit with him for an hour or so before heading home for dinner. Only sickness or rain would keep us from this routine. However, our well days generally out numbered our sick days and the weather in Baltimore was usually tolerable year round (though I admit that a handful of summer days were intolerably hot).

            Vermont, though cold in the winter, still allowed me my daily walks and began my long distance running career. When cold, I would bundle myself in layers, snuggly wrap Lucy or Lily in the stroller, and head out the door. Spring, though often wet and rainy, was mild enough to walk and run. Summer was ideal, and fall was breathtakingly beautiful for both walking and running.

            I now live in Florida where heat and humidity combine for 6 months of the year, making any type of exercise unbearably tiring and wholly unenjoyable. As I walked this morning, I found myself dragging along at a snail’s pace. My legs felt like lead, throwing my back out and making it difficult to stand up straight. The heat and humidity zapped my strength. Before even setting out, sweat was pooling on my brow and dripping down my back. My lungs felt constricted, fighting hard to breathe in the moisture naturally inherent in the air. I returned home drenched, drained, and depressed.

            Walking and running have always been stress relievers and outlets for my anxiety and depression.  A good walk or run has, in the past, never failed to make me feel better when down. They have always been instruments of joy. However, as I walked this morning all I could think of was how much I hated it. How much I would rather be lounging in the air conditioning. How much I despise this time of year in Florida.

            To be fair, Florida does have several bearable months, where the humidity disappears and the air dries out. However, you cannot depend on the heat to disappear completely. Last year we were in the 80’s for most of the winter. For now, I must power through the thick moist air and pray that this winter we see milder temperatures and more amicable walking weather. Both my mental and physical health depend upon it.

            

Being a T1D Mom

             I am a member of a group for Type 1 diabetic moms on Facebook. About once a week, I get notifications informing me that someone has posted a concern, a triumph, or a question regarding their child’s Type 1 diabetes. It is place to receive support, answers, and understanding of the struggles that parents of children with diabetes face everyday. So far my involvement has been limited to reading other’s posts and comments. However, I know that if I had a question, concern, or triumph to announce the community would rally around me. Having a community is important when you are a parent, but especially important when you are parenting a child with special needs. Everyday we face challenges that are foreign to most parents; challenges that take a toll physically, emotionally, and mentally. I, like most parents of children with special needs, am not looking for sympathy, but rather understanding. When you are a T1D mom:

1.    You do not sleep. Lily must be tested a minimum of 6-7 times a day. Three of those are in the evening. Once before bed, at midnight, and at 3am.  Jody and I have developed a system over the years. One of us tests Lily before bed. I go to bed by 9. Jody stays up and tests her before midnight right before he goes to bed. I then wake up at 3am and test her. If her sugars are high or low further testing may be required. I have been up all hours of the night at times making sure her sugars are level.

2.    Your life is dictated by numbers. Normal blood sugar levels should fall between 80 and 200. Anything under 80 requires treatment to bring her sugar up. Anything above 200 requires giving insulin to bring her sugar down. Both high and low blood sugar levels can be dangerous. Besides knowing her sugar level, you must know how to count carbs, calculate ratios, and corrections.

3.    You can’t just higher anyone to watch your kid.  Anyone that watches Lily has to know not only how to test her but how to bolus her, and what to do if her sugar level is low or high. Therefore, date nights are non-existent. We only get breaks when we take turns.

4.    You worry, A LOT! All parents worry, but as a T1D mom you worry ten fold. Not just about everyday sugar levels, but about sickness (which affects sugar levels), about leaving your child at school in the hands of other adults who aren’t necessarily trained to take care of your child like you are, and about leaving your child alone for any amount of time, even in another room. You worry about pod failures and alarms. You worry about the long-term effects this disease will have on your child.

5.    You feel isolated and alone due to the demand of your child’s condition. Taking care of Lily gives me very little time for others and every spare moment I have I use to take care of myself. Unfortunately, spare moments are few and far between.

6.    You find an inner strength you never knew you had. I have never liked disease or anything related to the medical field. I always said that I could never be a nurse or a doctor. I can’t stand illness. It stresses me out. However, since Lily has been diagnosed I have had to do things I never thought possible, like giving her shots and pricking her finger to draw blood.

Despite the challenges we face on a daily basis, I am continually amazed by Lily’s resilience and positive attitude towards life. Some days my patience is stretched to its limit. Some days I am worn out and stressed out, but in the end you do what you have to for your child’s health and happiness and along the way learn something about yourself.

           

Sleep...Oh How I Love Thee

           Each night, as I prepare the girls for bed, I also prepare myself for bed. Eight thirty lights out for the girls is also my lights out. However, I usually end up laying wide awake for the next hour or so until Lily’s squirming and wriggling subsides and Lucy’s eyes become too tired to read anymore.  It isn’t until I switch on Pandora’s spa radio, and the girl’s drift off to sleep, that I am finally able to relax enough to sleep myself.  It would be wonderful if that were the end of the story and I woke up refreshed the next morning. Unfortunately, it is only the beginning of a long night of anxiety-inducing dreams, restlessness, and insomnia.

            Last night, somewhere between the hours of 4am and 5:30am, I dreamt that I was back in my parents Baltimore house, although the house was bigger and grander than in reality. In my dream, I couldn’t close my mouth. Upon investigation, I discovered that I had five or six fishhooks wedged in my gums, which I proceeded to remove myself with needle-nose pliers. I thought removing the fishhooks would rectify my oral issues. However, my teeth soon became loose and began falling out. I stood staring in the bathroom mirror horrified and frozen, afraid of the procedures I would have to endure to restore my teeth. I woke up this morning practically hyperventilating and running my tongue along my teeth in the hopes that they were all still there. This is only one of a series of strange, anxiety-inducing dreams that I experience each night in the short stints that I am actually asleep.

            These dreams, along with the worries of the day, leave me tossing and turning most of the night. I wrestle with the covers half the time, either too hot or too cold, too covered or not covered enough. My pajamas wrap around my legs, squeezing the life out of them.  My restlessness is in part due to the quality of Jody’s sleep. Some nights he tosses and turns digging his knee into my back or twitching so violently that I am forced to the couch.

            I also suffer from acute insomnia. Initially falling asleep isn’t too much of an issue. However, staying asleep or falling back to sleep once I am awake is a constant problem. I have to wake up each morning at 3am to test Lily. This would not be that much of an issue could I sleep consistently between 9:30om and 3am. However, I usually wake up at least once during that time period and sometime don’t fall back to sleep before having to test Lily. Once I am up and out of bed, have gone to the bathroom, and tested Lily, I lay awake for another hour or two, unable to drift back to sleep. Again, this would not be an issue if I could sleep in. However, every weekday morning Jody’s alarm goes off at 5:50am, waking me up. My own alarm, which goes off at 6:30am, is pointless, as I am already awake most mornings. However, getting out of bed seems next to impossible due to my exhaustion from a night with little sleep.     

            My sleep habits make functioning on a daily basis difficult. They affect my anxiety, my energy levels, my brain function, and most of all my motivation. There was a time when sleep wasn’t an issue for me. In fact there was a time when I, literally, slept like a log. I do not know how many earthquakes I learned occurred the morning after while growing up in California. In Baltimore, I slept through fire engines outside my window, only to learn the next morning from my neighbor that there had been a fire across the street. Thunderstorms never disturbed me. Today, I long for that deep restful sleep. I long to wake up refreshed and ready for my day. I long for the motivation and relaxation that come from a good night’s sleep. And I fear that I may never experience it again.

Pay Attention, Please

         Last year, while at our local library, I ran into a mother whose children attend the same school as Lu. Though we saw each other daily we had not previously struck up a conversation. We did on this day. We talked about a variety of subjects, what grades our children were in (hers were a year ahead of Lucy), who they had as teachers (the one detail I can’t remember from the conversation), where we lived (she happens to live not 5 minutes from me), how long it took us to get our children to school in the morning (25-30 minutes) and which route we took to and from the school (she followed the main roads, I favored the back roads). We talked for 15-20 minutes before our children began to demand our attention and pull us in different directions. Throughout the rest of the year, I saw this woman every afternoon at pick-up. We often exchanged pleasantries and talked about how the year was progressing. The end of school saw Jody, the girls, and I traveling north for the summer and the end of our conversations.

            However, we struck up our daily acquaintance again at the beginning of this school year, nothing more than exchanging pleasantries but still small conversations. About a month ago, she began a conversation with me about Lily and her growth over the last year. We then began talking about IB middle schools in the area (there are only two), which led to her once again asking me where I live. I was taken aback, as she continued to ask many of the same questions she asked me a year ago at the library. At first, I simply felt like I was having a déjà vu. However, as I shuffled the girls into the car and began to drive home, I became more and more annoyed by the situation. Did this woman have such a short-term memory that she didn’t remember our conversation? Does she simply talk to so many people that remembering my details were impossible? Or was this an indication of something else, something inherent in our society, a lack of caring for other people and their situations? An egocentrism?

            This incident bothered me. However, I was able to brush it off because this woman is an acquaintance at best. Not two weeks later, I was texting a friend that I hadn’t talked to in awhile but keep in touch with through Facebook. The conversation began as most conversations among friends, with us asking each other how things were going and what was new. It then progressed into more specifics. I began to discuss the challenges of taking care of a child with diabetes and my desire to move. To my dismay, my friend asked me which of my children has diabetes, and where we are now living. I was shocked.  How could this friend, whom I adore, and was so close to at one point in time, know so little about my family and life, especially when I post so frequently to Facebook? I tried to excuse my friend’s lack of knowledge by telling myself that she/he had a family and a life too, one thousands of miles from me, but, honestly, I was pissed.

            I pride myself on learning names and retaining information regarding the individuals I meet, especially information regarding my friends. I am not perfect. I don’t always remember every detail, but my memory can often be easily refreshed. Whether this is a learned or inherent skill I am unsure, and I question whether others have simply not learned to pay attention to individual details, if it simply isn’t inherent in their personality, or if they simply don’t care enough to pay attention. I want to believe that others care but simply lack the skills. However, my interactions with individuals often have me questioning this theory. The only thing I do know for sure is that when I have interactions like the two described above I feel angry, sad, and discouraged. So the next time you are talking to someone, whether you will see them again or not, pay attention, you never know when those details may come in handy and make someone feel as if they are cared for.