A Day to Honor…
…all those living with Diabetes in whatever form it takes in their lives. On this day, World Diabetes Day, we are especially remembering the thousands of people, both children and adults who live bravely with Type 1 Diabetes all over the world. It will be two years on December 7th, that our daughter Maddie was diagnosed with Type 1 Diabetes. She continues to amaze us with how she daily faces this disease, courageously bounces back when it tries to knock her down, and creatively solves “problems” she faces with its limitations.
A recent example of this is how she has chosen to deal with issues arising from taking a gymnastics class. She has left this weekly class in tears because of the pain of either the teacher accidentally touching her inset while helping her up on an apparatus, or from it hitting a bar as she tries to twirl around it. Since she did not want to put her inset in her back area (where the insulin does not deliver very well), SHE decided she wants to take out her inset for the duration of the gymnastics class, then come home, put on the lidacaine cream for numbing, and re-insert a fresh inset. Mind you, the insertion of an inset is not a pain-free process! But she insists on this, and her dad and I want her to be “in charge” of managing this disease and of her own body. We salute her bravery, her creativity, and her determination to not let diabetes keep her from doing ANYTHING!
Here’s to ALL who live with diabetes around the world. We think especially of those children living in areas of the world where diabetes supplies are slim, unattainably expensive for them, and who do not have access to some of the technological advances our children in the U.S. benefit from. We pray for provision for them, for people to educate, train, and care for them as they manage their diabetes.
If you would like to read more about our own journey with Maddie and Type 1 Diabetes, click on the Category link in the right-hand margin of my blog, titled Type 1.
A Great Day for Walking
On Saturday, October 23rd, my three kids and I went for a beautiful walk around the campus of Wake Forest University. It wasn’t just any old walk. It was the Walk for the Cure for Type 1 Diabetes sponsored by the Juvenile Diabetes Research Foundation here in the Triad of North Carolina. It was the third Walk of the season, having hosted Walks in Greensboro and High Point already.
The day dawned glorious! The sun seemed to dance along with our hearts as we walked under the balloon arch. We were walking for a purpose, walking with friends, walking to support our daughter and all children and adults like her who live with this disease. My heart was full as I walked with friends who came to walk with Maddie: her soccer coach and his daughter who is a teammate of Maddie’s, a nurse and dear friend from Baptist (not pictured here; she was taking the picture!), my parents, and both of my teenagers.
As I walked, I also remembered the numerous people who had given to JDRF in Maddie’s honor…friends both near and far who couldn’t join us at the Walk, but who nonetheless gave of their resources to promote the research that will one day find a cure for diabetes. It may even happen in Maddie’s lifetime!
We joined up with her very good friend, Jessica, and her family. Here’s Maddie and Jessica walking along together. Jessica was diagnosed with Type 1 Diabetes one year prior to Maddie and was a fifth grader at Maddie’s school last year. We met her when Maddie was diagnosed and she has been such a friend and encouragement to Maddie! Her family reached out to us with open arms, offering advice, listening ears, and empathy. I will always treasure this family!
These photos were taken by my oldest daughter who is becoming quite the photographer with her new high tech camera. I asked her to be the photo-documenter this day. I had originally thought I would create drawings from the photos, but they are so beautiful, I wanted you to see the beautiful light and specifics of the day. This final photo of Maddie says it all…a beautiful girl for whom the efforts of JDRF have given a rich, full life at the ripe old age of 8!
Thank you to JDRF for all you do for our daughter and so many others’ daughters and sons!
And thank YOU to all who contributed money and time for the Walk!
It was indeed a great day for Walking!
Maddie’s Mission
Around a hundred years ago, Maddie’s great-grandfather was growing up in Burgaw, NC as the oldest of 10 children. He had a younger brother, three years old, who followed his mama around crying, “wahwah, wahwah!” (that’s baby for “water, water!”). His thirst grew and grew, along with other health problems such as frequent urinating, weakness, vomiting, and he soon died of what was then called “water diabetes.”
We now know so much more about what killed my grandfather’s little brother: juvenile diabetes, nowadays referred to as Type 1 Diabetes. Knowledge of what diabetes is, as well as advances in how to manage it, now allow most people with Type 1 to LIVE and to live much healthier and more active lives than ever before. Most of these advances are due largely to the efforts of the Juvenile Diabetes Research Foundation and the American Diabetic Association. So much of what Maddie uses today to manage her diabetes is a direct result of the research and discoveries made by funding from JDRF.
Maddie and I will be walking for a cure for diabetes and for more advances in understanding and managing diabetes. Our Walk will take place at Wake Forest University on October 23rd, 2010. I invite you to take part in providing necessary funding for JDRF to continue their research. “Smart” Insulins, and an artificial pancreas are just some of the incredible advances they are working on now, along with daily progress towards an actual cure for Type 1 Diabetes. Even the smallest of donations goes a LONG way with JDRF!
Maddie and I also invite you to walk with us that morning. It would be wonderful to have a group of folks to walk with her, supporting all she does to manage her own diabetes as well as her efforts to raise money for a cure. Thank you ALL for your friendship and support we have experienced already in the last ten months since her diagnosis!! We could not have made it this far without all your thoughts, encouragement, and prayers!
***The easiest way to donate to Maddie’s Mission is click on this link here. It will take you right where you need to go to contribute. Thank you so very much!
What the data “says”…
Picture This: My husband and I are sitting in a room at Brenner’s Hospital on the 7th floor, just a month or so after Maddie going on the pump. Our wonderful diabetes doctor, Bobbi Hackman, asks us how it’s going with the pump.
My answer: “I’m drowning in diabetes. I’m frustrated with her blood sugar numbers, they don’t seem to stay in a good place for very long, and I can’t seem to wrap my head around how to do it better.”
My husband’s answer: “It hasn’t been easy, but I think Jennifer and I look at the numbers differently. She looks at what Maddie’s blood sugar is to tell her whether she judged correctly or not, whether she has done everything right. I, on the other hand, just look at the blood sugar number to tell me how we need to proceed from here.”
A light goes off in my head. And our diabetes doctor says, “You do realize you have a Mars and Venus thing going on there. That’s probably why the two of you were put together.” Amen to that!
This was a wonderful revelation for me. As I said in an earlier post, my need to calibrate my own mind as to how the pump works was just this! Maddie’s blood sugar numbers are not judging me as to whether I’ve cared for Maddie in the way I should’ve. Those numbers are just numbers that say where she is at any given moment in the day. And they are data that helps me know what we can do next, NOT whether I’m being a good mom or a bad mom, NOT whether I’m totally stupid at calculating what is needed to manage her diabetes, NOT whether I should just throw in the towel (or throw out the pump!).
In some ways, I needed to realize that I MUST GET OFF THE ROLLER COASTER! I need to see myself as OBSERVING the roller coaster of blood sugar levels, and having an active part in managing those levels. The more I can observe and learn, the better care-giver I’ll be. But if I allow the numbers to determine WHO I AM, I’ll sink. This is Maddie’s body after all! Not mine. It is her little body that endures the effects of the roller coaster and some of it, even SHE cannot manage. We’ll do the best we can, together, with the information we’re given.
To our Diabetes Doctor, the data says this: “It’s the nature of the beast. This is fixable, we can do something about it.” Ahhhh………
The Roller Coaster Ride
To say that Blood Sugar Levels for a Type 1 Diabetic are like a Roller Coaster Ride, would be accurate especially if you are talking about roller coasters such as Carolina Cyclone, ThunderRoad, and Top Gun, all from the Carowinds themepark in SC. Here’s a one-day roller coaster we ride fairly frequently:
7 am at breakfast: Maddie’s blood sugar=125. Good place. Eats 60 grams of carb, receives correct amount of insulin via pump, goes off to school.
10:45 am: Phone Call from Secretary at school, “Um, Jennifer–Maddie just tested for lunch and she is at 264, is there something we should do other than bolus for lunch?” Me: “No, just let her bolus for the carbs she’ll be eating and include the BG#. The pump will calculate both what she needs for her food AND will correct the high blood sugar.”
2:45 pm (Maddie has to test everyday at lunch AND just before getting on the bus to be sure her numbers are in a safe place for the ride home): Phone Call from Secretary at school , “Jennifer, Maddie is 63, what should I give her?” (63 is way too low–we shoot for her numbers to be between 80 and 180) Me: “Give her two glucose tablets and a granola bar…I’ll come pick her up asap!”
5 pm dinner: Maddie tests for dinner and her blood sugar is 135. Good spot. Now to bolus for her dinner carbs, but must subtract some carbs or monkey with the I:C ratio since she is getting ready to go to soccer practice. We don’t want to give her too much insulin since she will be using up carbs exercising. This was likely the reason for her low at school because they had recess after lunch on a hot day.
7:30 pm: Home from soccer, doing homework, practicing piano…”Mom, I feel shaky, I think I’m low.” We test, and sure enough, her number is 78. We check how much Insulin she has on board, leftover from dinner, and make an educated guess at how much carb she should eat to bring her up to a healthier level, AND be enough to carry her through the night as she sleeps. This is the trickiest part of the day, as if the rest of the day wasn’t tricky. But sending your child off to sleep with the possibility of her going low without knowing it and possibly passing out in her sleep is unbelievably scary, worse than the steepest plunges of a roller coaster.
8:45 pm: Test one last time before she sleeps=134. Hmmm…might be on its way up or might not be enough. I tend to err on wanting to give her a bit more carb, so she drinks a bit of milk, the perfect food for carb/protein ratio.
Midnight: 232 Good grief! Obviously, I overcompensated for her evening low. Other nights this doesn’t happen even with a similar amount of carb given. One never knows. It’s a bit of a guessing game. I correct the high blood sugar using the pump.
7 am the next day: 155. A good place to start the day. Who knows whether today’s roller coaster will be Top Gun, or a small one, like Scooby Doo.
Ok, so this gives you some idea…the above is a print out of Maddie’s blood sugars we keep every day. This is invaluable information for us and for our Diabetic Educator who can look at this and see trends that need fixing, places in her day that can be tweaked on the pump to better manage her blood sugar levels. I think at some point, families stop writing all this down. We’re not there yet.
Oh, and did I tell you, I’ve never been terribly fond of roller coasters?
The Inset
At the other end of the pump and tubing, is the highly important “inset”, short for “Infusion Set”. We chose a particular kind of inset for Maddie based on several factors: her being a child and needing a slanted insertion rather than 90 degree insertion, and a manual insertion rather than an “automatic” type. As I mentioned in my previous post, there are several problems you have to watch out for with the inset: possible crimping, air bubbles, or site complications. The inset has to be changed every three days in order to prevent infection. Our bodies are so good at noticing the presence of foreign objects, that they begin to attack them, thus creating an infection. We change the site of the inset in order to keep this from happening.
Site care is very important. Our “pump book” recommends actually creating a chart of your child’s front and back mid-sections to mark about 16 different places to alternate placing the inset. The body needs time to heal from the inset “hole” as well as the insulin delivery to that area. During our shot-giving months, we unknowingly caused something called “lipohypertrophy” around our daughter’s belly button. This is where the fatty tissue there begins to swell from repeated use. The insulin apparently causes this condition when it is inserted in the same place over and over again. We do NOT want this to happen to Maddie’s belly, sides, and back!!
The inset has a “cannula” which is inserted via a fairly large needle. Maddie doesn’t like looking at it. I don’t blame her. We are learning to insert the cannula and then remove the needle quicker each time. She also “wears” a glob of lidocaine to numb the area as much as possible before we give her a new inset. It’s about a 1 1/2 to 2 hour process from the time the lidocaine goes on to the actual inset application. We can’t wait too late in the day to change the inset…we need time afterwards to be able to assess whether the new inset is functioning properly, ie. whether the insulin is actually delivering. You do NOT want to have to change the inset again in the middle of the night.
Just imagine how a typical 8 year old might react to all this. I keep thinking we would have hysterics, crying, hiding, running away, in general doing what I myself might do. But incredibly, we do NOT have a typical 8 year old. We found this out as she bravely took her shots. We did not tell her to buck up and be brave. She’s a very creative gal: she tries different things and then sticks with whatever routine helps her. She has found that watching SpongeBob Squarepants helps keep her mind off of the inset going in. She likes having a little soda next to her to drink in case she feels a bit woozy. She likes to have as much “say” in the process as she can, and then leaves the yucky part to us. We know that she has a bit of dread on inset days…she wakes up and sometimes the first words out of her mouth are, “Oh pooey, today’s an inset day.” Other than that we don’t see too much resistance. She is AMAZINGLY brave, courageous, and boldly faces each inset change with fierce determination.
An artist friend, Dan of Dan’s Canvas, said in a comment on the previous post, that his son, who has autism, has taught him so much. His son has taught him to be “more empathetic, more patient, more accepting.” This has already been true of our daughter. We have learned so much from her. Her acceptance of it all is sobering to me. She does not merely accept it, but seems to embrace it and truly find joy in it. I know what Dan is saying is true and that my husband and I, and our other two children, will continue to learn so much from Maddie!
The Pump…Not a Pancreas
After 7 1/2 months of giving our daughter 4 shots a day (sometimes more if she wanted to eat more), she “went on the pump” July 22nd. This is terminology used for saying that she now wears, 24-7, a cell-phone sized device that administers insulin for both meals and a continuous base-line amount. This little device has a cartridge containing a 3-day amount of insulin (it can hold more, but with hot weather, the insulin can “go bad”, so we only put in 3 days worth). It is attached to a length of tubing which is “connected” to her mid-section via an “inset” or, as I’ve heard other parents call it, a “port”.
We were told, in advance, of the transition period required to set the levels on the pump to Maddie’s needs…a period of about 6-8 weeks. We were told, in advance, of the benefits and limitations of the pump. We were told it was the best way to manage her diabetes. We were told that it would indeed add more challenges due to technological issues, inset function, etc. I was aware on a cognitive level of these things. I was not aware on a personal, day-to-day experiential level.
To briefly state what the last LONG two months has taught me, it is that THE PUMP IS ONLY A COMPUTER. It only “knows” and can “do” what you have programmed it to do. And then, it can only do what it has been told, if you have given it the correct resources to pull from, ie. enough insulin in her cartridge, tubing without air bubbles in it, and an inset that is not crimped or otherwise compromised. The number of variables as to what can go WRONG with the pump is oftimes overwhelming for me.
I won’t go into all the particulars of what has to be checked every day (that may be A topic for another post), but I will say, that as we have been calibrating the pump (tweaking and adjusting the ratios); I have also had to calibrate my mind–to adjust and correct what I somehow had in my head that the pump would do for Maddie. I never expected it to be able to test her blood sugar levels…I knew all along she would still have to prick those sweet little fingers multiple times a day (in fact, MORE times now on the pump). I knew all along that it would not be able to adjust itself to meet her needs. But somehow, getting it square in my head that this VERY EXPENSIVE, tiny little thing is ONLY a computer, has helped me. It is NOT a pancreas. It doesn’t know how much carb she is getting ready to eat…we still have to count the carbs for a meal or snack and TELL the pump this info. It doesn’t know when she is getting ready to exercise (exercise causes her to use up carbs pretty quickly, so you have to back off on the amount of insulin you give her). It doesn’t know that she is anxious about taking a test, or excited about a party, or angry, or ANYTHING!! all of which can raise her sugar levels! There are so many variables a healthy pancreas monitors (our bodies are truly amazing!), but this little device is no pancreas!
Lest you think it is all doom & gloom, the pump DOES have many benefits that mere shot-giving cannot touch. Once all the ratios and levels are set (for the time being ONLY, since she is always growing and her insulin needs are always in flux), then it will do all the math for us. You type in the number of carbs she is getting ready to consume (and hope she will actually consume all of them!) and then type in what her current blood sugar level is, and it will calculate how much insulin she needs based on the time of day (it changes throughout the day), based on her insulin sensitivity level, and what insulin she may still have on board, if any. Very useful, very helpful information. She is also able to give herself insulin when we go out to eat, instead of us giving her a shot in public. She also doesn’t have to get the shots, although the burning of the insulin going in is felt every time, just like it was with her shots. We are even able to adjust the basal levels so that she has less of a chance of going low in the middle of the night. Yet we are still testing at midnight every night. We did, however, drop the 3 am testing several weeks ago, for which we are very thankful. Neither my husband nor I are ready to drop the midnight one…not sure we ever will.
So, in many ways, my husband and I try to THINK like a pancreas. But here we see our own limitations as well. As much as we can predict, adjust levels, bolus for fewer carbs, or whatever; we are not able to keep Maddie’s blood sugars within “normal” limits at all times. We thought, or perhaps I should say, I thought, I would better be able to do this with the aid of the pump. Every day, I’m reminded that just as the pump is not a pancreas, neither am I. I am human. I can only do the best I can with the information and technology I have at my disposal. And then, I have to leave it there and pray.
Type 1, My Story
Danny Gregory’s most recent post on September 21st, has caused me to think a bit. He talks about how Everyday Matters, the book, came to be…how he had not thought that his story of learning to live again after his wife Patti’s tragic accident which left her paralyzed, was something he could/should/wanted to share with others. He knew that drawing was how he worked through the aftermath, how he chronicled even the smallest of things that became treasures in the wake of tragedy. But he did not feel he could share this most personal, private part of himself. He didn’t think that something that mattered so much to him and to Patti would matter much to anyone else. He discovered that it mattered a lot to those who’ve had the good fortune to read his book.
Prior to reading his post, I had been toying with taking a blog-holiday. I’ve been feeling increasingly scattered, both creatively and personally. A blog certainly supports this approach: short and sweet entries about WHATEVER! But I felt I needed a break to sort out whatever was being stirred up. Typically, my scattered, all-over-the-map creative self, is an indicator that something’s getting stirred up. I usually won’t see it for a while. I just have to wait it out. But after reading Danny’s post, I realize I’ve only shared with you the tip of the iceberg of my story as a mother of a Type 1 Diabetic child. Here, here, here, and here are just a few of the posts I’ve spoken about and shared with you. But there is so much more. So much that is indeed simmering around in my head and heart, and I think I can share it with you.
In beginning this journey of posts, I feel there are several things to state up front. I am only giving MY perspective, not my daughter’s or my husband’s, or any one else who is touched by Type 1 Diabetes in any way. It is MY story…how I’M processing all this…how I am learning, growing, grieving, rallying, learning to live again. Though no one has died, nor become paralyzed, there has indeed been a kind of a death. A death to a way of life that we will never return to. I keep having to learn this.
I am also NOT fishing for sympathy!! I am in no way trying to wrest out of you an emotional response, nor do I invite cheerleader comments. I am simply wanting to share my journey in such a way as to encourage ANY who might be on a similar path. Certainly, if you or anyone you know is touched by Type 1 Diabetes, please share this with them…it might encourage them.
And so, what does the above drawing have to do with all this??? I drew it yesterday, standing at my sink, gawking at the temperature gauge, longing to go sit outside on my back deck, but knowing I’d be back inside within a few minutes. Oh the heat!! Here in my little part of the world, we are having a record breaking year! We have had more days above 90 degrees than any other year on record! It has felt oppressive. I have had many days when dealing with diabetes has felt equally oppressive. And though we are looking toward the heat breaking next week sometime, I face the fact that Type 1 Diabetes is here to stay. It will not go away with a rain storm coming through. It will not take a break for a season or two. The work that my husband and I do for our daughter, and indeed the work that she does to manage her diabetes is never ending. 93 would actually be a great blood sugar number for her. But alas, her sugar numbers do not stay at 93…they are only passing through to some other number, be it 250 or 50. I’m learning to live with this and to find joy in it.
BTW-I’ve begun a Category for all my posts on life with Type 1 Diabetes. You can see the list of categories over in the right margin if you’re interested in reading more.
“I’m Pumped!”
Thursday, July 22nd was a day I had both been anticipating and dreading all summer. This was the day our youngest daughter, Maddie, who was diagnosed with Type 1 Diabetes on December 7th, of last year, was to go on the pump. We’ve actually had the pump in our possession for over a month in order to learn about it and “use it” with saline instead of insulin as much as possible before it being hooked up to her body. Last Thursday was “hook up” day. We had it on the calendar as Pump Day. Maddie couldn’t wait! To her, it meant the end of shots, the end of Lantus (the more “stingy” of the two kinds of insulin she received), more freedom, more independence, and a cool gadget to wear, just like her 5th grade friend who also has Type 1 Diabetes. “I’m pumped about the pump, mom!” she would say.
I too had some excitement about fewer shots to give (we made it clear to her that there would be times when she would need to have a shot even though she was going on the pump). I too had some excitement about more freedom for her to eat at odd times and to have some special sweets, like birthday cake at a party. I too, in theory, was glad for her to have more control in her diabetes regimen, though we really drilled into her the importance of mom and dad double checking her carb counting and BG levels. I was NOT, however, glad about the idea of her being hooked up to something 24/7. Somehow the thought of my little girl always having tubing coming out of her mid-section, with a small computer device clipped onto her shorts or worn in a pouch, did not seem very “free”. My emotions bounced around from grief to gladness, from resistance to acceptance, from fear to a knowledge that this is really the best way to manage her diabetes. I also know that she, as a child, has a TON more resilience and openness to her new life, than I do. And I did NOT want to infect her with my resistant attitude.
Aside from her almost passing out when the first inset went in at our Diabetic Educator’s office, everything has seemed to go fairly well, considering. SHE is doing great! My husband and I are exhausted from being up round the clock at night to check her blood sugars, trying to remember how to “correct” a blood sugar, how to bolus, what this particular alarm means, how to load the cartridge, prime the tubing, the cannula, etc. On Sunday we successfully inserted inset #2 (it’s an hour and 1/2 long process!!) and things went much better than the first time…I’m hopeful that each time we do this (every three days), it will get better and better. I hope.
On Sunday, in church, Maddie drew this picture and one other she asked I not post. I tried not to show her my teary eyes when I saw them. It is just an expression of what’s on her mind these days. She loves her lime green pump. Yet she doesn’t love calouses on each of her fingers (her other drawing). But she charges on, each day, taking hold of her new life with diabetes, seemingly fearlessly. Her dad and I are SO proud of her. She is brave, responsible, joyful, and beautiful. Her 13 year old brother told her today that he would not be so brave as she, if he had diabetes. I think she really took this to heart…it’s different when someone other than your mom and dad are telling you these things.
If SHE is pumped about the pump…I am gonna be also!!
P.S. To identify for you the objects in her drawing: #1 is the lancet, used to prick her finger for blood sugar testing; #2 (on left) is the bottle of test strips with the code number on it; #2 (on right) is a test strip; #3 is her blood sugar meter with the strip in the bottom and it is registering 158 (a bit on the high side, but we don’t panic with that number:).
Honeymoon Over…
A recent conversation with our diabetic educator (the wonderful Kathie Cooper):
Me: “I don’t get it, I don’t know what I’m doing wrong…but Maddie’s sugar levels are up and down, all over the place it seems, and for reasons we can’t quite figure out.”
Her: “Welcome to Diabetes. This is what I would call classic evidence of a child with Type 1 diabetes coming out of the honeymoon phase. This is what real diabetes looks like.”
As strange as it may seem, this was actually a comfort to me. My shoulders relaxed a bit. Not that I want this kind of roller coaster ride for our 8 yr. old, but to know that there are SO MANY factors other than carb counting and the appropriate level of insulin, is helpful to know. These other factors are impossible to “manage”: stress, exercise, activity levels, growth, etc.
What I THOUGHT was meant by “the Honeymoon Phase” was that she and we, were learning how to manage and cope with diabetes and that at some point things would level out. What THEY meant by “the Honeymoon Phase” was a period of time (no one really can predict how long it will be for each child) when their last remaining beta cells are still producing small amounts of insulin, thus helping the insulin you are already giving them to maintain the blood sugar levels where they need to be. Coming OUT of this “honeymoon” means that she no longer has any insulin being produced and we are now operating solely on the insulin we give her and counting carbs and trying to think like a pancreas…WAAAAHHHHHH!!! (picture here a roller coaster of the wildest kind!)
So we are getting very familiar with lows…sugar levels diving under 80…and highs…sugar levels spiking up into the upper 200′s and low 300′s. We are getting familiar with smarties and juice. Two packages of smarties are a fast-acting carb that brings her back up to a healthier level where she isn’t weak, shaky, and about to keel over. Small juice boxes (I found the perfect carb count-15 g- at Walmart!) are great too! It’s just so odd to actually HAVE to give your child sugar, when you’ve tried to foster in her a good sense of taking care of your teeth, your sugar intake, etc. It all goes out the window when you’re experiencing a low. At that point you are giving candy to your child hand-over-fist to get sugar in her.
Sometimes she’s too low to go to sleep at night and we have to give her snacks with carbs right before going to bed. This was NOT a habit of ours prior to diabetes! Now, we say what a lucky kid she is…to be able to eat yogurt, or granola bars, or ice cream right before going to bed!!
Perhaps there ARE some perks for her even if the honeymoon’s over.
Angelica from Hawaii
Before Spring had sprung, our family had a visitor…she came down the stairs dressed in her bathing suit with shorts and tee shirt over that, and a light yellow jacket on top. She wore a pink tinkerbell visor with sun glasses and flip flops. She introduced herself as a friend of Maddie’s from Hawaii! She even had a little accent, a lispy sort of accent, but was very chatty telling us all about her life in Hawaii and how she met Maddie. She hung out with us as we got dinner ready. She showed us all the things that were in her small brown “luggage case”. When dinner was just about on the table, we asked if she knew where Maddie was. As she nodded her head yes, we asked if she would go tell Maddie that dinner was ready and she needed to do her routine (our word for the diabetes shots routine) and come eat. She said she would let her know, said goodbye, we wished her a “bon voyage” and a few minutes later, Maddie came downstairs dressed in what she had been wearing that day, which were long pants, a long sleeved shirt with a sweater, socks and shoes. Good way to dress for the frigid temps we had been having.
As we got Maddie ready for dinner, we talked about her friend from Hawaii. She asked if we got to meet her and if we liked her. Maddie explained that her friend was a bit cold since she had dressed in her Hawaii clothes. She also told us that her friend, Angelica is her name, does not have diabetes, so she (that is, Maddie) has to explain everything to her. It was all quite fun and we kept it lighthearted and played along.
Yet my heart couldn’t help but ache a bit. Whether Maddie realizes it or not, I wondered if the play acting is actually how she is working out things that she longs for: warm weather and no diabetes. I don’t exactly know how a child’s mind works, but it seems pretty evident that she would at least on some level want sunshine and warmth (me too!) and to be free of diabetes (i want that for her too!) Maybe she even wants to travel (i could go for that as well!). How wonderful that children have a healthy way of dealing with these longings…playacting is so much better than temper tantrums, pity parties, and the like. As an adult, I tend toward the latter…perhaps I’d do better to get on my shorts and tee and flip flops…
…maybe even GO to Hawaii!!:)
The Glad Game
Maddie and I have just finished reading Pollyanna together. She received the book for her birthday in January from a friend. It has been the perfect story as we are in the beginning stages of the diabetes journey. I was surprised and delighted as each chapter unfolded; and couldn’t wait for the ending! I really did not expect to like it so much.
When I was a young girl Maddie’s age, I got the distinct impression from others that “Pollyanna” was a bad word. At least, the way they talked about it was in a very negative light: such things as, “You don’t want to be a pollyanna!” or “She is such a pollyanna!” I was never quite sure what the problem was, and now that I’ve read the book, I’m still not sure.
I AM pretty sure that being a “pollyanna” has to do with playing “The Glad Game”. This is a game that young Pollyanna learned to play from her pastor-father when life dealt less-than-desirable events, such as receiving crutches in the missionary barrel, when she had longed for a doll. Finding something in the situation to be GLAD about was the game…to see if one COULD find something to be glad about and then allowing oneself to actually BE glad in the midst of the disappointment or tragedy, whatever it might be. Pollyanna and her father found that the fact Pollyanna did not need crutches (at the time), was certainly a reason to be glad indeed. Pollyanna would go on to experience far more distressing events than not receiving a doll: the death of her father and an auto accident leaving her paralyzed; to name the worst of them. Pollyanna becomes a bright light in a dark town, bringing the game into the homes and hearts of so many people when she goes to live with her Aunt Polly Harrington after her father dies. The story is compelling, heartwarming, and has a wonderful touch of mystery and romance too.
I s’pose what is so repelling to those who frown on this way of looking at life, is that it appears to be a way of merely passing over or denying a very real disappointment or heartache. Nothing could be farther from the truth, IF one reads the book! I have personally gone through hard times when some well-intentioned folks tried to “cheer me” by playing “the glad game” for me…but in most cases, their efforts fell flat because I had no sense that they themselves had ever been through anything remotely as disappointing or heart-wrenching as I had experienced. Yet when others, whom I knew to be survivors of suffering, came alongside me and played the glad game (not in so many words), I could hear it and I was buoyed by their perspective…challenged to see even some measure of light in the darkness of my circumstances. I now feel pretty certain that this “glad game” is really NOT for the faint of heart…it requires a strength of character to play it, to even entertain that there might be a glimmer of hope in the midst of horrid circumstances.
Of course, it often takes a while…for the game to have it’s sway in one’s heart. This is certainly born out in the character’s lives as they struggle to understand the game and play it along with Pollyanna. Indeed, Pollyanna herself struggles greatly with playing the glad game when her legs “won’t go” after the automobile accident. She just can’t seem to find anything to be glad about that. And we can fully understand! But in time, her eyes are opened to the “good in the bad” (as someone said to me just the other day as we talked of our daughter’s diagnoses) and Pollyanna is able to embrace the glad game. It is NOT denial, or some way of putting on rose coloured glasses. No indeed. It is the hugest, most difficult thing our hearts will ever do: find joy in the midst of suffering.
It is gut wrenching, yet lovely, to realize how my own dear little one is playing the glad game with more fortitude and openness than I am. She has in many ways, a greater strength of character and a stronger willingness to see the good-in-the-bad than I have. On more than one evening as we finished our chapter just before tuck-in, she would say, “So, playing the glad game with having diabetes means…” and then she would say something she thought was good about her having diabetes that would catch my heart and bring a teary smile. The book has even brought her a deeper sensitivity to the physical challenges that others face…seeing someone in a wheelchair, or someone who has a pump, or a limp. The really cool thing is that the family that gave her this wonderful book, are indeed survivors of suffering (actually they endure it each and every day); and to know their story makes the gift of this book all the more powerful!
One of the most difficult things for me in watching my daughter deal with diabetes is the numerous finger sticks she has to do in a day. Anywhere from 5 to 8 times a day, she bravely jabs the lancet into one of her precious, beautiful, 8 year old fingers to give a drop of blood for testing her blood sugar level. I asked her recently (genuinely wanting to know her thoughts on this), if she was able to play the glad game with the finger pricks….and this was her response: “I’m glad I have a way to know what my sugars are so I won’t faint and so I can get my insulin.” I gulp. I grin. I’m grateful. Honestly, people, I wonder if I would have such strength of character.
To Hogwarts and Back Again
Well, not quite Hogwarts. Our family went to the Grandover Resort & Hotel in Greensboro on Friday for a JDRF family conference. JDRF stands for Juvenile Diabetes Research Foundation. We had been telling our older kids (I call them The Teens) all week about this, trying to cast the very best light on it, and still met with resistance as we were driving over on I-40. Maddie couldn’t wait. She knew that a friend from school, who also has diabetes, was going to be there with her family, and that there was a pool indoors. Even the pool didn’t seem to be too much of an enticement for The Teens. But as we rounded the corner, one of The Teens, said, “Is it that castle over there?” And we all turned and said simultaneously, “WOW!” Someone dubbed it Hogwarts. It was indeed Grand, with lush interiors, beautiful rooms, lovely pool (but so packed with kids, The Teens refused to swim until late at night:), and good food. ANY food is good when I have not had to make it.
Coming home late Saturday, my head and heart were full! Head was full of information, some which I could absorb and some which I could not. My heart was full from meeting so many people, so many families from across our state who were living with diabetes just like us. It was encouraging to say the least. There were blood sugar monitor kits, pumps, insulin shots everywhere. What has seemed so UNordinary to us in these first weeks was so ordinary there. Everyone there had walked this path, was walking the path, and facing the future with the same hopes and fears as we were. We were amazed at this organization called JDRF. All of what our Maddie receives today, is a direct result of the fund-raising and research that JDRF has done over the years… from the types of insulin, to the blood sugar monitors and test strips, to the knowledge about carbs and exercise, to the pumps, and even to amazing things in the works for the future: a once-a-day insulin (called Smart Insulin), an artificial pancreas, and SO much more. Incredible things are happening in the research area for Type 1 Diabetes. We are so thankful to be living in an era where so much is available for Maddie’s health and vitality.
But the icing on the cake was to come home to all your lovely comments and thoughts you left for me in my blog “mailbox”. I had sent out that last post about Maddie’s quilt just before leaving for Hogwarts the Grandover Hotel, and had no idea so many of you would visit and be moved to comment on that lovely gift. Your comments were yet another lovely gift to help settle my overwhelmed head and heart. Thank you so much!
The Comfort of Yarn
When we were told we would probably be staying a night or two at Brenner’s for our daughter to be cared for her newly diagnosed diabetes AND for our training in caring for her, I tossed into my purse a zip-lock bag of two balls of Noro Matsuri yarn, some crochet hooks, and a pair of scissors. As I put them in, I knew I would probably not get a chance to actually crochet a design I’ve had banging around in my head. But I wanted to take it, to have it on hand. When we got settled into our room, I placed the bag on a shelf near where I would be sleeping. I could see those happy balls of yarn from just about any spot in the spacious “homey” room, and that was really all I needed…just to see the yarn.
It’s amazing how comforting yarn can be. Somehow, just seeing the colors sitting there brought comfort… the bright vivid colors, the soft squooshiness, the promise of a beautiful scarf, the anticipation of creativity, the hope of life opening up again to allow for time to crochet, a reminder that my life is not ONLY finger pricks, insulin shots, sugar levels, ketones, carb counting, etc. I do often carry around my sketchbook and pen. Yet it doesn’t quite hold the same kind of comfort. The sketchbook in and of itself does not have that warm, home & hearth kind of feeling about it.
An artist friend left a comment on the “When Life Happens” post that she didn’t think she could concentrate so well while facing so much. Yes, that is a challenge. But it is also a comfort. To engage in creative endeavors while going through difficult times, functions somewhat like a tether. Your life feels like it is whirling out of control. And so it is. But drawing, knitting, crocheting, grounds you, reminds you that at the very least, some things do not have to change. When concentration is difficult, choosing to create in ways that are “second nature”, or very simple, are helpful. It may merely be placing the creative project or the supplies close by that will offer some comfort as you whirl around in the unknowns.
When Life Happens…
My knee-jerk reaction when difficult things come crashing into my life is to view them as interruptions, aberrations, abnormalities, unwanted guests, separate from the life I’m supposed to be living. This reaction was very prevalent on Monday as I sat in the pediatricians office with my sweet 7 year old girl waiting for a urine test to come back. I had actually called and made this appointment. Certain things about my girl had been bothering me for a couple of months. I had these nagging thoughts that something was not quite right, but could come up with seemingly reasonable explanations for each of them. My growing suspicions kept bringing one thought to mind…juvenile diabetes. Due to heightened symptoms in the last week, I got online to find out what the signs of juvenile diabetes were, and there in the top 3, were all the things I had been seeing in my child. I immediately made the appointment.
I was prepared, somewhat, for the doctor to say that yes, her sugar levels and ketones were high and yes we need to tend to this. I was not prepared for him to say that we needed to go to Brenner’s Children’s Hospital ASAP. I told him we had so many other appointments that afternoon having to do with our other children’s needs. He very kindly said that he thought others would understand us cancelling these appointments due to our child being diagnosed with diabetes. He also said, again very gently…she needed insulin yesterday. Life interrupted. Life rended in two. Life, as I had known it, halts.
There was a brief moment- as I sat in the ER at Brenner’s, after hearing the confirmation of this diagnosis, just how high her blood sugars were, and what needs to happen next- the thought came into my mind to gather up my Maddie and walk right out the doors of that hospital and return to our life as it had been. Of course, I did not do this. Something kept me in my seat. Somehow I knew that no matter how difficult and painful the coming days would be, that this would be what would restore my child’s health and keep her from further damage and even worse pain. The “difficult thing” was exactly what she needed to survive, to really live, to flourish.
What I’m realizing anew, as I have many times in the past, is that THIS IS LIFE. This is not an interruption or aberration to a life we think we were meant to live. THIS IS IT! Though I am NOT saying that this is what life was MEANT to be like, I am saying that it is in these difficult patches that life can be rich, full of love and meaning and learning. The rest of life becomes a sort of theatrical backdrop to what is really happening on stage. I do not want to only hang out in the scenery…I want to engage on the stage of life, whatever comes my way.
I’m sounding a bit like I’m preaching. And to be honest, I am. I need to do this. You must not think that tears have not been shed, or that I stoicly push myself to “look on the bright side” of things. Even as I type, my eyes well up, my mind replays the memories of how Maddie cries sometimes when she gets her shots, the feeling of being overwhelmed looms large. I need to live one moment at a time, one finger prick and one insulin shot at a time. We’ve been watching Santa Claus is Comin’ to Town (several times in the hospital and again last night)…the song “put one foot in front of the other” has been running in my head these last few days. It’s a good thing to remember.
When life happens, it’s good to also remember: The “difficult thing” is exactly what I need to survive, to really live, to flourish.
