Turning 7

  

This week, my baby turns 7. I can’t believe he is going to be 7 years old. It seems as though he just turned 5 yesterday. I can still remember my surprise late the next morning after he was born seeing how much frizzy dark hair he had when I took off his cap. It was definitely a sign of what his hair was going to be like. It is curly and still frizzy. There are days I put the hairbrush down, throw up my hands and send him off to school with however his hair wants to behave that morning. He is still as bouncy as he was when he was a baby. He broke two bouncers and a johnny jumper when he was a baby because he bounced so much.  He loves his older brothers and he looks forward to telling them everything after school. He seems to always have a smile on his face and will greet everyone he meets. He definitely walks to his own drummer and there are days I cannot seem to silence that drummer of his .
A stranger would never guess that this upbeat, boisterous, cute curly haired boy has diabetes and has had it for the majority of his life. It will be 4 1/2 years this month.

I DID IT!!

As I drove away from the elementary school after I dropped off Sebastian and Deacon this past Monday the full force of starting school hit me. I was reminded, “This is what you have been working for these past few years. You finally did it.”

I have been attending community college since Deacon was diagnosed in 2007. I stumbled a bit on which major to take. Because I was afraid of not making enough money for myself and my sons, I took an attempt at accounting. After two semesters of taking business and accounting courses, I decided to swallow my fears and return to what I loved.

For those who do not know, I am majoring in sociology with a minor in criminology. I have also taken several psychology courses. I love to analyze and I am hoping to become a consultant in the criminal justice system. I want to help change the parts of the system that do not work. I plan on focusing on victimology and penalogy. My own personal goal is to get a PHD just to be able to say I did it.

The criminal justice field was a fluke. When I returned to school after years of not being a student, I chose to take psychology but the school I wanted to attend required a minor too. I thought criminal justice goes well with psychology, why not give it a try. I discovered a passion I didn’t realize I had. I seemed to have a knack at writing legal briefs, loved all the topics in my classes and I was passionate about the discussions I had with my classmates. I took several courses at the community college to save money and to get a lot of my gen. ed. courses completed. This also allowed me to remain close to Deacon these past few years.

This past Monday, I officially started this last leg to getting my degree. Several times a week for the next four months, I am not a mother, nurse, chauffeur, errand runner, secretary, chef or event planner. I am ME the student. I love being a student and I always have. I love to learn and share my own ideas.

What I also love is I get an hour after my classes to play whatever music I want in the car without hearing someone make a comment about it. So yesterday, I played Aerosmith, Alice Cooper, Meat Loaf, Poison and Bon Jovi on my way home. Who knows which artists I will pick for after classes this week.

Reactions

One thing that I make sure to do on the first day of class, in all of my classes, is to talk to my professors about the importance of keeping my cell phone handy and the reason why. I haven’t had to do this in over a year since I took online courses for the 2010-2011 school year. I have gotten used to a range of reactions when it comes to this. There have been a few of my professors who knew all about diabetes so they were perfectly fine with me keeping the phone handy. Other professors understood the situation and were still okay with the cell phone. But there is one reaction I get that still surprises me to this day.

When I spoke with my professor, with whom I have two courses with this semester, he/she visibly paled. When Deacon was still a toddler I got that reaction a lot. I assume it was because he was so young when he was diagnosed. As he has gotten older I have gotten less of this type of reaction.

The effect of my teacher’s reaction didn’t hit home with me until I sat down in the hallway near my next class and thought about it. My first thought was, “Wow. I hope I didn’t frighten the guy/gal. It’s only diabetes.”

Okay now then that may get me in hot water on the net. I know diabetes is far more than “only diabetes.” I have experienced the worry, fear, anger and a range of other emotions. But when I thought that it was because of my surprise to the reaction along with the fact that I am several years down this road. I have come to understand that even though this is a demanding, emotionally tolling disease, Deacon could have more serious diseases. I have felt the twinge of sadness when I walk into a hospital and see a child or adult battling a far more debilitating, life threatening disease. I have had the reminder that this could be a lot worse and have taken it to heart.

And even with that thought I thought, I still kept a close eye on my phone all day and I also called my father more often than I normally would. I was like a mother who just left her new baby with the babysitter while she runs errands. Deacon was not far from my thoughts that day.

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.”