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.

Struggling

I’m struggling this morning. Struggling to move. Struggling to find motivation. Struggling not to cry. I’m simply struggling.

            Knowing why I am in this place would be helpful. However, I myself am at a loss as to why I am struggling so terribly this morning. Maybe it is once again the grueling routine of school after a long break or it could be the burden of a messy house and never-ending laundry. Maybe it is just this overwhelming feeling of being alone with a pile of responsibilities I don’t want to face. Whatever it is, I am having a hard time lifting myself up, both physically and mentally.

            I made myself a Chai Tea Latte this morning in the attempt to cheer myself up, this usually does the trick; however, today it was ineffective. I decided to get out of the house for a bit, running errands at Office Depot and Target in order to distract myself, again, ineffective. I even ordered myself a Smoked Butterscotch Latte at Starbucks hoping a double shot would do me good. I came home and did a bit of organizing in Lucy’s room. I fetched the mail (I even received a package I have been anxiously anticipating for a month), opened all the doors to let fresh air in, and cleaned the counter to the best of my ability. I have done a series of small things that usually help to improve my mood. Short of exercising, which I have no desire to do at the moment, I have utilized a variety of coping strategies. Instead I sit here fighting back tears.

            At some point in the next hour I will have to leave to pick up Lily. I dread the hour and a half that exists between Lily getting out of school and Lucy getting out of school. An hour and a half I usually enjoy walking and playing with Lily on the playground. I don’t want to leave the house. I don’t want to exercise, even though I know I need to. I don’t want to do anything but sit on my butt in a state of pure laziness. I even dread this evening’s chaos. Getting dinner, entertaining Lily while Lucy is at aikido, the bedtime routine. It all seems so overwhelming today. Obviously I need a break, but when, and how?

Readjusting to Alone Time

           Every morning for the past two months, I come home, after dropping both girls off at school, and make myself a pumpkin spice chai tea latte. As I sit drinking my chai, I take note of what has to be done around the house that day, which errands need to be run, and how much laundry I have gathered in my laundry basket.  On the days my mom is home, I call her and we converse for 45 minutes or so before I get my day started. When I hang up the phone is when my anxiety sets in.

            I haven’t had time without a child by my side for four years. Therefore, it is a bit disconcerting to walk into an empty house with four hours of quiet ahead of me. I admit that in the past all I have wanted is time to myself. An hour of quiet to sit and read or to leisurely browse the plethora of magazines that come in the mail seemed like an unattainable dream, one that I have longed for for the past four years. However, now that I have the time, I find myself wracked with anxiety because I feel lost and alone.

            I remember feeling this way when Lucy first started preschool at the age of 3. I was petrified to leave my house should an emergency arise at her school. I found myself pacing the floors waiting for the phone to ring to deliver some disastrous news. It took me forcing myself out of the house and a whole lot of talking myself off of a ledge until I became comfortable with the thought of being alone.  Once I became comfortable, I was able to relax and enjoy the time I spent with myself. I came to terms with the fact that some days I was extremely productive and others I did nothing but care for myself.       

            But then we got Lily, and everything once again changed. I not only had a new baby and limited time to myself, but then she was diagnosed with diabetes and time to myself became almost non-existent because she requires 24 hour care from someone trained to take care of her, that person being either my husband or I, with a little help from my parents when we lived in Vermont.

            Today we live thousands of miles from friends and family. The lack of support has taken its toll on my mental health. It has made me more vulnerable to anxiety. Lily’s physical health is a constant state of worry, and even though I have taught her teachers the basics, they aren’t trained to deal with every situation that may arise. Daily, I find myself making mental lists of all that could go wrong and sticking close to my phone in the event that I should have to run out the door at a moments notice. I have to talk myself of ledges regularly and remind myself that keeping busy and taking care of myself are the keys to reducing anxiety.

            Therefore, I am sitting here doing something I love, writing; a task that also tends to ease my anxiety. I will probably browse Facebook for a bit after posting this, and then make a list of all those household tasks that are still incomplete. Hopefully, I can keep myself busy enough to keep myself sane.