Relinquishing Some Control

There is nothing more worrisome for me than not being readily available to take care of Deacon. I have been no more than 15 minutes away at all times since he was diagnosed in 2007. This has always been comforting to me. Last year I was very fortunate to be taking online classes for both semesters. I was free to handle anything at any time.

Tomorrow I will be commuting to where I will attend college for, hopefully, two years. I do not know which is harder; attending classes and doing the homework while raising four boys, or letting go of the control I have had and letting others take care of Deacon. Right now the idea of getting into my minivan and driving 45 minutes away is pretty daunting, and I want to be like my son, who started middle school last week, and yell, “I don’t want to go.” Yes, I am being childish and I know it.

I spent last week writing list after list of phone numbers, hypo and hyper symptoms, simple protocols and meeting with nurses and teachers. Today I spent the afternoon talking with my father about different procedures for Deacon, having him practice with the glucagon and performing a site change so that my father could get more familiar with it. Everyone who needs to be informed has been and are prepared to take care of Deacon. I will have my cell phone with me so I can be contacted if really need be. I even contacted my teachers to inform them of my situation in case I get contacted during class.

Tomorrow I will put on my big girl panties, keep my phone close at hand and I will be calling to check on Deacon more often than usual. I will undoubtedly keep a closer eye on the time more than normal. In time, as the semester goes on, I will slowly relax and become more accustomed to having a less hands on role with Deacon during his school day. But in all seriousness, right now I am looking forward to Tuesday when I will be at home no more than 3 minutes away from his school!

A Single Mother

 

On a personal level, I have been a single mother for 3 years and 10 months. Yesterday, in the eyes of the law, I officially became a single mother to my four sons. The settlement came after many years and months of worry, tears, frustration, anger and self doubt. When I entered my lawyer’s office yesterday, I didn’t hesitate signing my name on several copies of the document. I had already spent yesterday morning re-reading the emotional abuse and its toll on me that I had written down to remind my heart why the marriage had to come to an end.

As with many mothers, I tend to forget that I am as important as my children are to me. I have been fighting to keep my sons safe and advocating for them in all of this, that on occasion, I did forget the emotional roller coaster I had been put through as well. I may at times feel sad, lonely, jealous of happy couples but I will also no longer have to worry about whether myself or my sons are being abused or neglected.

The kids and I have come a long way since October of 2007. We have grown to become our own little family with our special quirks, talents, traditions and inside jokes. We have made our own friends. We have made a house we all fell in love with a home. I look forward to having friends and my sons’ friends over.

I have become a better mother since the separation. I have grown to be more patient with the kids. I enjoy having my sons and doing things together as a family. I laugh more with them than ever before.

Diabetes, ADHD, anxiety issues, school, bills and everyday life may exhaust me, but I believe in doing the best I can to continue on this road that I have been blessed with. A door has just closed but another one opened and I intend to make the most of it for myself and my boys.

When Diabetes Goes Bad

            I do my best to see the times that diabetes goes bad as a learning opportunity. It may take a few days for the lesson to become clear but there almost always is something to be learned.

            To say that this past week was like living through hell would be an understatement. I am still recovering from the nights of little sleep and the days of trying to keep my calm because Deacon’s erratic numbers were causing him to be very cranky. Oh so cranky…I am fortunate enough to know how his crankiness works and how long it will last once his numbers start regulating again. Deacon seems to be whiny, teary and wanting to have a tantrum for 24 hours after he starts to stay in the 100’s.

            This week of illness started last Friday when Deacon developed a cold. At the time the only symptoms he had were a very runny nose and a sore throat. The cold symptoms went away over the weekend, but on Sunday afternoon I started seeing the highs. I changed out the site and started a brand new vial of insulin. He started going low, so I started a temp basal. When he woke up Monday morning with a 307, I thought the temp basal I had started that night contributed to the high.

            Monday went from bad to worse within a matter of a few hours. Alex was upset and kept sighing at his breakfast (He wanted something else to eat.). I spent close to an hour at the store and still forgot something, I broke a plate while feeding the cats, and within ninety minutes of dropping off Deacon at school, the morning nurse called and said, “Deacon is 309 and has large ketones.”

            At 9:45, Deacon and I walked through our back door, and I had to remind him that he could not play the Wii until the ketones had cleared. By 11:00 the ketones had become a trace and his number was in the low 200’s. I began to breathe a sigh of relief and started on my class work while Deacon rested. I thought that everything was going to be fine. Diabetes had other plans. At noon, Deacon was climbing back into the 300’s but still there were no ketones. I treated the high and got him to rest some more. At 1:30, I tested him and he was 595! Okay, I decide it is time to change out the site again. Does this work? Only temporarily. He came down for a little bit but only into the 200’s, and he still wanted to climb into the 400’s.

            On Tuesday, I kept Deacon at home from school because of the endless highs. I tried a temp basal but the increments either kept him high or dropped him low. By the end of the day I felt my resolve and patience wearing. I was grateful when my parents agreed to take Deacon for the afternoon on Wednesday. After much imagined head banging, talking ideas over with other parents of CWD’s, and trying to gain some perspective, I chose to move Deacon’s site to his leg. I set my alarm for two hours later and went to sleep.

            My alarm beeped and I tested Deacon to see that he was 54! I treated him with cake gel and sat down on my bed to find that my heart was racing. This wasn’t the “normal” heart race reaction to a middle of the night low. Through my fog I reached for the meter and tested myself. I am 71!  (Not many people know this, but I have Type 2 diabetes. I am very well controlled and am not on medication anymore.) So, I started eating 4 glucose tabs and began to really feel the shakiness of a low. I went downstairs and made myself a pbj sandwich. It was close to 15 minutes later when I stopped feeling my low and I was above 100. I tested Deacon who was 85 but was feeling better. I gave him more cake gel and after that treatment he was 121. I stayed awake until 2:30 a.m. though. Coincidentally the last time I had a middle of the night low, Deacon and I were the same numbers we were for this latest hypo episode.

            Wednesday morning I took Deacon to the doctor and she said that it looked as though he was coming out of a virus and his numbers should start settling down soon. That day he had some more lows and his highs went into the mid-200’s. I sent him to school on Thursday where his highs were in the low-200’s and he didn’t have any lows. Now he is more stable and has stayed in the 100’s since Friday.

            The lesson I did learn through this illness is that there was a pattern to the wonky numbers. As the illness progressed, where the bg’s wanted to climb went from being dangerously high to moderately high and then there were no highs at all. I can see the numbers slowly go from being in the 500’s and 400’s to the 300’s, then the 200’s and slowly lower into range day by day. I am marking this down that way I can look for this again the next time Deacon gets sick.

            It is now Saturday and I am feeling less tired and frazzled than I had on Wednesday and Thursday. Hopefully by Monday I will be back to being my own energetic self. Thank you to everyone who helped me, kept us in your prayers and listened to me vent.

Rehabilitating the Control Freak

"He doesn't seem to have good control of his blood sugars." or "When will he be under control?" or "His numbers are all over the place." are just some of the comments I have heard about Deacon’s numbers since he was diagnosed.
            Control is a word that is verboten in the vocabulary of Type 1 diabetics. There is no control and there are no "shoulds" when it comes to Type 1 diabetes. That was something I was going to learn very fast. If anything I learned that diabetes was the one in control. Diabetes may allow you to think that you are in the driver’s seat but it will remind you at least once a week that you are just a backseat driver.
            Before Deacon was diagnosed, I was a closet control freak. I wanted everything to be perfect. The kids were to be dressed nicely. Our home was to look clean for visitors. The kids were to be well behaved while out in public. Not only did I want things perfect, I wanted things planned. I was a serious planner. I hated surprises and schedule changes. I liked to know what was coming around the bend. Diabetes has changed how I have approached life.
            I am often prepared to drop everything to go take care of Deacon.  I tend to fit into diabetes’ schedule far more than having it fit into mine. After all, diabetes isn't going to stop causing lows and sites will not stop being pulled out just because I have an exam. I did fit diabetes into our meal time schedule but it seems to be about the only thing I could fit diabetes into. I carry a cell phone with me that only those who care for Deacon know the number to. I let the school nurses know when I will not be available that way they can call one of my back-up people. I even made it possible to be more flexible with my time by taking online courses these past two semesters.
            I am still a planner but I am more understanding about changes to the schedule. I have learned that a house can look cluttered and slightly messy because of being too tired to clean properly. Instead of a “once a month” house scrubbing, I do a 3x a year deep cleaning of the house and closets. I still like the kids to look their best but I am not a basket case when Sebastian walks out of the house with holes in the knees on the weekends when we are running errands. I have learned to accept that not everything I want will get done and I may have to find a different time to get it done. . I have learned to try not to plan ahead and to focus on the upcoming day or upcoming few days.  I have become a more flexible, less frazzled mom since diabetes has taught me some important life lessons about unexpected interruptions and I am enjoying life more that way too.

Ipro 2011

            I am scared. Deacon is having this year’s IPro study done and I am being very honest when I say that I am scared of the results. I look forward to seeing the A1c results every 4 months but this blind CGMS study is tying me into a bundle of nerves.

            My voice of reason reminds me that this study will help with the trends that are already confounding me and the ones hidden from view. After all, last year’s Ipro study was very rewarding in what it showed and how it helped. It is fun to see what is going on behind the scenes as it were.

            But last year’s IPro study also showed me every parents of a child with diabetes worst fear. Deacon was dropping at night and he was having rebounds. The IPro caught two different rebounds. (I had known about the lows but when I was treating those lows his body had already kicked in the rebounds.) In some ways it was very satisfying to have proof of the pattern I had been telling the endo about for two years. I had been telling her Deacon rises from 8 p.m. until midnight and then he will drop. That rise is the main reason why I still do not give him anything to eat after dinner time. The endo has since stopped telling me that there will come a time that I can sleep through the night since she saw that trend firsthand.

            For me though, I couldn’t sleep for fear of losing Deacon to a low at night for two weeks. I slept fitfully in between alarms because the endo and I were changing settings at night. I kept listening to Deacon’s breathing for his signs that he was going low. I watched him at night like a new mother staring in awe at her new baby; only I was gripped by fear not awe. The fear slowly abated as Deacon became steadier overnight though.

            But now I feel that trepidation again of what this study will show. Has Deacon gotten to be less wild now that he is another year older? Are there still hidden lows while I do my best to get my sleep at night? How many weeks after this test will I be awake every 3 hours to test?

            As we get closer to the end of this study, I do my best to keep my thoughts light-hearted. After all, it is not always that I get to see what is really happening with Deacon’s numbers. My endo and I work well together at bringing our heads together to come up with new calibrations, and it is fun to talk with her. If what his meter is telling me is right then he is more level than last year, and wouldn’t that be a nice graph to see? If it is less peaky than last year’s, then I am going to put it in my personal drawer to take out the next time Deacon’s numbers are being wonky to remind me that,  “Yes there are times he really is fine and this too shall pass again.”

Four Year Diaversary

    It has been 4 years since Deacon was diagnosed with Type 1 diabetes. In that time, I have gone from believing I had a partner to handling this on my own. (My father has remarked that I have been single nursing Deacon for 4 years and been a single parent to 4 boys for 3 ½ years.) Four years ago mine, Deacon’s and his brothers’ lives changed immeasurably. I did not know the extent of the changes that would be made when I took Deacon to the ER that night. I knew it was diabetes but I did not realize how pervasive diabetes was.

    In this four years time, I have cried, gotten angry, known a different kind of fear, kicked myself for making a potentially costly mistake and felt the pride that comes with seeing Deacon growing up healthy. I learned how to adjust his insulin, found out which foods did what and how to handle those issues, and have endured the dreaded sick days. Deacon and I have gone from injections to using the insulin pump. We have tried out what seems to be all the meters on the market. I have watched Deacon learn to test himself, read labels to find the carb count and begin to recognize if he is low or high.  I have felt the worry of sending Deacon to school and the relief of him having his nurses checking him throughout his day. I have adjusted my parental beliefs and accepted help from Deacon’s brothers because they wanted to help. There have been a lot of adjustments and more will come too, I am sure.

   Recently, I changed how we managed lows, how I log BG’s and started using a brand new meter. Deacon had been using the Freestyle Lite for the past 3 years. I had gotten a Bayer Contour USB for free and gave it a test run. Deacon loved the ease of holding it to test himself and I enjoyed how easy it was to log. I just plug the meter into a USB port and the numbers are uploaded. The Bayer logging software does color code the numbers and the trends are easier to see than the Copilot software I had been using. I do miss seeing the three month average and standard deviation that Copilot showed. I have begun to alternatives to glucose tabs. We are finding that jelly beans are effective. I suppose after 4 years of doing everything the same way, the routine can get stale.

   Today, I am not going to dwell on the fact that I, for the most part, have been Deacon’s sole caregiver since he was diagnosed. I am not going to relive the memories of the week Deacon was in the hospital or the subsequent months. I am going to celebrate the fact that Deacon is a healthy, happy, energetic 6 year old. I am going to give Deacon’s older brothers a hug for their hand in this past year.  I am going to pat myself on the back for another year of success and blow out a candle to wish on for another successful year. Happy Fourth Anniversary to our “new normal.”

The New Normal

Getting accustomed to "new normals" are a part of life. There are pleasant and unpleasant changes throughout our lives. There are changes that in the beginning someone believes that they could never get used to, yet later realize that it was the best change that could have ever happened for them.

In January of 2004, I was looking forward to a new year where I had two sons in school, I was searching for a daycare for my youngest son to attend, and I was applying to the local college to resume my education. I was still married at the time, and my husband had returned safely from Iraq and no deployments were planned for about a year. To me, the future was looking bright and I was content with where I was.

In mid-January, I began to feel tired, had dizzy spells and felt like I had a cold. On January 21, I stopped living in denial and I took a pregnancy test. The positive line came up before the test line did on this particular test. I was washed over with feelings of fear and sadness. I was happy to only have 3 sons. Sebastian was reaching an age where I was comfortable with leaving him in someone else's care while I went back to school. Being pregnant was not going to allow me to go back to school. I was anxious about the morning sickness. I have "all day for most of the pregnancy" sickness. Sebastian was very sick when he was born and I was terrified that was going to happen again. My own health degrades as my pregnancies get close to term so I was also nervous about that. The shock I felt with this positive pregnancy result hit me harder than when I learned that I was pregnant with Hawke when Alex was 5 months old. Alex and Hawke are not even 13 months apart. They missed that milestone by 5 days.This was a surprise pregnancy that I had a difficult time getting overjoyed about.

Deacon fully entered our world at 11:59 p.m. on September 9, 2004 with his usual element of surprise and on his terms. My family's and friends' worries that I would not bond with him were unfounded. I wanted to hold him as soon as the nurses would let me. I was a mother hen when he became jaundiced, slept longer than I had seen with his brothers, developed a cold when he was one month old and got diaper rash. It was pretty clear that I could not imagine life without having Deacon in it. Deacon with all of his joy for life has completed this family. I think even his brothers would agree.

On March 17, 2007,  I was met with another new normal. This was a new normal that I couldn't fully comprehend even though I had been introduced to diabetes before Deacon's diagnosis. I was overwhelmed with learning how to carb count, keeping to a strict schedule, what the numbers really meant, drawing up insulin and injecting it, and how to use the glucometer. Over time, I learned that there was a need to still test Deacon during the night. Through trial and error I learned what foods caused what reaction and how to combat them. I am one of those parents that will prohibit a particularly evil food, such as pop tarts, pie or blueberry muffins. It took a few months to accept it and get used to the new normal. Like newly diagnosed parents, I never thought that I would.

I have ridden the diabetes roller coaster for 3 1/2 years now. I have gone from the new normal of giving injections several times a day to using an insulin pump. I unconsciously look at the clock to see if it is time for Deacon to be tested by his nurse. I grab the "emergency" phone on my way out the door without fail. I panic if I cannot readily find the kit in its usual places. Carb counting is so ingrained in me that I will carb count everyone's meals. I occasionally feel the pull to test all of my sons and bolus their meals too. My body is so accustomed to waking up at 3 a.m. that I really do not need my alarm set to ring anymore. My nightly ritual is to turn off lights, lock up the house, put the dog in her crate, and grab the kit and cell phone off of my desk as I walk upstairs. The first stop I make at the grocery store is the pharmacy area to get more glucose tabs. I spend 5 minutes every weekday morning packing Deacon's snack and writing his morning BG, what he ate for breakfast and the carb counts, and what he was bolused in a book that goes to school for his nurses. In the afternoon, the first thing I do is read that book to see what his numbers were like at school. I am used to the new normal of diabetes and, like having Deacon, I cannot imagine my life without it either.

As I write this though, there are families who had gotten used to the new normal of the diabetes diagnosis and are now grappling with a different new normal. It isn't the new normal we want for any of our families. These families have experienced what most families of children with Type 1 diabetes fear. They have inexplicably lost their child to diabetes. Like most members of the diabetes community, I am at a loss for words. I have sat at my desk dumbfounded at the news of another child being taken way too soon. I have cried. I have hugged Deacon tighter and have stepped up my own vigilance in response to the news.

My thoughts, prayers and tears continue to be sent to these families. I cannot begin to completely imagine how they must feel, but I do my best to be there for them in spirit and online words as much as possible.