Because Growing up is Hard Enough

This year, our second daughter decided to move into an apartment in her college town and take some summer courses.  In the short 2 months she has been away, she has definitely applied the life skill of problem solving.  The last few times she has called me, she is the epitome of Murphy's Law.  I have renamed it Taya's Law in my mind.  She learned how to change a light bulb of  light on a 10 foot ceiling without a ladder.  (Let's hope she doesn't do that again!)  She learned how to find financial aid when FAFSA fails and that you have to work hard and long to make money.  She learned how and where to get her oil changed so they don't try to convince her that her car will fall apart tomorrow if she doesn't fix this or that.   She learned that fun stuff costs money and so does locking yourself out of your apartment.  She learned you can't win a wrestling match with road dividers and she is on a first name basis with her building manager after discovering a wasp's nest in one of the bedrooms. (Very gross!)  One recent text simply stated, "I hate doing adult things."

All of the above incidents could have happened to anyone, well, maybe not anyone in 8 short weeks

Taking a break from anatomy
to do blood sugar check/
insulin bolus

but these incidents aren't exclusive to Type 1 Diabetes.  To top all of this off, she is learning to manage her own healthcare.  She has started seeing an endocrinologist, a new dietician and a new diabetes educator.  She is learning to navigate these relationships so that she can find balance between the life she wants to live as a normal college student and the life she needs to live as a young person with a chronic illness.  I am so proud of how she is learning to advocate for herself to find that balance.  To that end, she made the decision to take a vacation from her insulin pump. This, I am told, is a pretty typical occurrence.  She is just sick of being "plugged in" and wants to try something different.  Tylie made the same choice at age 18.  The difference was, Tylie was at home working with our own familiar pharmacy and healthcare providers.  Taya's first frustration came when her endocrinologist's PA, a young person herself,  was very supportive and encouraging.  The diabetes educator, an older woman, was not.  Taya stuck to her guns and chose to stick to the plan she worked out with her PA, which includes a shot of an ultra long acting insulin daily as well as 3-7 shots of short acting insulin as needed to cover food or treat highs.  Let that sink in...up to possibly 10 shots in a day not including finger sticks!  On the pump, she would still do finger sticks but only change her set (the part that delivers the insulin to her body) every 3 days.  Essentially she is exchanging roughly 2-3 "shots" a week for potentially 70 or more!

Next up, finding a pharmacy.  Since she was unfamiliar with Grand Forks pharmacies, her physician sent the scripts to a well known chain.  I gave her the information she would need for insurance and all should have gone just fine.  At 6 pm, the phone rings, followed by the question, "How come everytime I try to do adult things something goes wrong?"  They would not fill her prescriptions because they said her insurance was denying it.  After a frantic call to me, who called our insurance company, it seems the pharmacy was not entering her information correctly.  After another couple hours of run around- I sent out an SOS to people living in Grand Forks who finally hooked us up with a pharmacy near her that worked with her on a much more personal level.  At 19, picking up cold medication used to stress me out.  I can't imagine how frustrated she was waiting to get the medicine that is required to save her life while all her friends were off having a relaxing summer afternoon!

Blood sugar check before the Bison game. 

Tylie, too has had numerous challenges in her quest to fit diabetes things in with 21 year old things. Her path to diabetes independence was a bit less bumpy as she had the luxury of a more gradual transition.  An unexpected blessing for the girls is that for the first time since Taya was diagnosed, they do not have medical personnel comparing them to each other as they now see different teams.  But, we can't forget TJ as he transitions to middle school and hormones and balancing friends, sports, and his desire for independence.    In a world that is fast moving and ever changing, there is one certainty for these kids of mine--diabetes isn't something they can grow out of, ignore, or pop a pill to cure.  They need insulin and sometimes juice boxes for life support.

My desk at work showing a week
of blood sugar chaos for the middle
school boy.  

I encourage you to help us keep advocating for a cure by reaching out to your government officials and ask them to sign a letter of support for the Special Diabetes Program.  This program provides $150 million annually for the National Institute of Health to continue vital research on Type 1 Diabetes.  Finally, if you feel so moved, help us reach our family goal for the JDRF One Walk next weekend and donate to our team- T1-cubed and of course, we'd love for you to walk with us.

Changes

Four years ago today, Troy and I were driving to Minneapolis for a weekend getaway to take in some Twins baseball.  On this particular drive, somewhere between Fergus Falls and Alexandria, I got a text from a friend I had lost touch with in recent years.  Her words instantly took my breath away and brought tears to my eyes.  "Addison was just dx'd with diabetes."  You see, we had become rather insulated in our little world.  We managed day to day.  We felt we were living successfully with diabetes.  We had ups and downs both in blood sugars and emotions but we were surviving.  We had become complacent and overly accepting of this disease in our lives.  Her text made me realize we shouldn't have to settle for this and no one else should have to live with it.

Now, four years later, we are in a different place.  We have become more active as a family in seeking a cure and promoting awareness.  I am no longer complacent or willing to accept that they will live with this disease their entire lives.  However, this has been a tough summer for me.  There are a lot of changes going on in our family.  First of all, two girls will be going off to college in two different places.  Taya will be venturing off to Duluth to tackle a biology major and Tylie is moving to Fargo to study History and English.  Just reading that you can see the differences in their personalities, yet it is hard for me to imagine one without the other. Tylie may be the oldest chronologically, but Taya has always been the one pushing her out of her comfort zone.   If Taya hadn't decided learning to ride a bike was a good thing, I am fairly certain Tylie would still be using training wheels.  Taya does things by the rules with order and logic and Tylie likes to dream and discover mysteries as they come along in her own time. They give each other balance.  What I have been learning in recent weeks is that they also give me balance.

Sending kids off to college is, in itself, an emotional event.  Now imagine those kids having diabetes. In addition to making sure they have bed sheets and coffee pots, my list includes finding a pharmacy and making sure glucagon is up to date.  In truth, I am terrified.  I have always been their back-up pancreas.  Even as they have learned to take care of themselves and I am more hands off, I fill the prescriptions, I follow their care, I see them daily.  I am up in the middle of the night when I hear the fridge open.  I am there when they are throwing up or have screaming headaches due to blood sugars that won't settle where they belong.  As they begin to make the natural separation from us and learn to live independently, I find myself anxious and unsure of what my new role is in both their real life and their diabetes life.  Endless questions run through my head and when I say them aloud, I can see their annoyance.  Does your roommate know what you are like when your blood sugar is off?  Does she know what to do if you can't do it yourself?  What if you get low in the middle of night?  What if you get sick?  Will you remember to check for keytones even if you don't think you have them?  I have managed to keep some thoughts in my head.  Instead of asking if there is a plan for where to keep pump supplies or syringes, I say out loud, "Do you need a microwave?" while quietly stashing AAA batteries and fruit snacks into the Target cart.  Much like four years ago, when I got that text from my friend, I realize yet again, we have become insulated.  I forgot to consider that there will be a time that they need to care for this disease more on their own, without me as immediate back-up.   They have to learn to manage it and own it in a way that works for them. I know we have raised them well.  I know they are independent and strong and resourceful and I am so proud of the women they have become. Frankly, I'm even a bit jealous of this new adventure they are about to undertake.  But, I know that diabetes does not play fair and that...well, that makes me angry.

Four years from now, we will again be in a different place.  The girls will either be finished up with college or working toward post graduate degrees.  TJ will be starting high school.  I want things to be different then.  I want them to move into homes without considering where to put all the medical supplies.  I want them to have families without fear of their health.  I want Addison and TJ to go college without being encumbered by a machine that doses medicine so food nutrients can actually fuel them.  Of course, above all, I want them to be happy.  Imagine how that would look in a world without Type 1 diabetes.

If you feel inclined to help make this a reality, please visit this link.  It will allow you to donate or join our One Walk team.  We are stronger together!  http://www2.jdrf.org/goto/T1cubed

Changes and Chances

 

The sign behind the kids' pumpkin alter egos gave me a bit of a laugh the other morning.  A picture is worth a thousand words, right!

      This fall has brought a great deal of change to our house.  I began a new job, Tylie began college, Tessa got braces, Troy had knee surgery, and we began house hunting just to name a few.  Our busy life just seems to get busier.  Sadly, in the midst of all of this transition, diabetes seems to be the one thing that never goes away and never gets easier.  We struggle to find the time to really manage it.  By that I mean uploading pumps more frequently, analyzing the data, questioning the crazy numbers. It is very comparable to grading papers.  I keep up with the grading (fingerpokes) but fall behind entering the grades in Powerschool (uploading).  I know in both cases, I need to take both steps to get the full picture and make better decisions but before I know it, another day has gone by and we are one day closer to the end of a quarter (A1c test) and I wish I would have done more!  Three kids and three A1c tests completed this month: Two were better, one was not.  I can't think of much worse then sitting through those appointments when the tears fall and we curse the broken pancreas all the way home.
    Today, Tylie went to her first appointment all by herself.  It took three tries to get there as the first time she forgot and the second time she had the time wrong but finally, she made it.  For a year or so now, she has been talking about taking a "vacation" from the pump.  So, today she brought the subject up and decided to take the plunge. (Ha- syringe humor!)  After three years off, the idea of shots is a bit daunting to me.  However, I am not the one constantly "plugged" in, either.  While she has been pretty independent for the last couple of years, I considered the ability to upload as my ace in the hole for keeping her accountable.  The fact that I can't readily see those numbers is more than a little frightening.  It is hard enough for me to shift my thinking as she enters this world of adulthood without throwing in diabetes.  I am proud of her for taking ownership and I hope she is able to find a method that works for her on a daily basis.  It is so ironic that when we first began pumping I had these exact same feelings.  That is the thing about this disease- the only thing you can be 100% sure of is that the pancreas won't be repaired by morning.  That is why we work so hard for a cure- A CURE- not just treatment.
     On that note, November is coming up and there are some things you can do to be more aware and to help find a cure.  This link will allow you to sign up for one days worth of texts designed to give you an idea of what it is like to live with T1D on a daily basis. http://jdrf.org/blog/2013/take-the-t1d-for-a-day-text-challenge/    You can also sign up to be an advocate:  http://advocacy.jdrf.org/get-involved/.  This is particularly helpful as we are working to make JDRF a more active force in North Dakota.  The work that has been done towards a cure is tremendous but there is still much to be done.
 



 

Taking a Step Back

Changing roles is something I am used to when it comes to my job.  I have had several jobs in my life and even when I have the same job- teaching- I have done it in different buildings and at different grade levels. Change is good, it's expected, it keeps us fresh.  Except, I am having a little more trouble with embracing theory in regards to parenting!

Two weeks ago, my three girls flew off to Europe.  Before they left, I made sure that I had placed all the insulin supplies in their hands to be packed.  Lots of supplies!  Aside from the money factor, a large part of the reason I didn't want to go on this trip with them was that I wanted to allow them the chance to experience Europe on their own.  By that I mean, without the Diabetes Police.  I will admit, it is hard for me not to constantly ask them about their blood sugars, if their site needs changing, did they bolus, and the list goes on.  Of course, I left some instructions with my mom and told Tessa to slyly be sure they were checking.  We pick them up on Tuesday and I have to say, I am pretty proud of myself for not inundating them with texts about their care.  I did ask a few times, but in my defense, one was a follow up because Tylie was having low morning blood sugar and needed me to get a message to our educator asking for suggestions.  (They worked!)  The end result of all of this is I miss THEM!  The girls, not the diabetes.

I know that I have a tendency to get wrapped up in the details and the what ifs to the point that sometimes I forget to be in the "now."  Whether I am focused on blood sugars, lesson plans, house hunting- that is all I can think about or, as my husband points out, over think about.  My back up plans have back up plans. Do I like to control situations?  Absolutely!   I know that at times I can be downright irrational about it in fact. Call it OCD if you must.  However, in this case, beyond helping them get their necessary items in order and visually and verbally confirming that they were in the bags, there would be little I could do from across the ocean to change anything.  I knew without a doubt they could take care of themselves.  Somewhere, about day three as I was forcing myself not to send a text asking if they had been checking their blood sugars it occurred to me that I had to trust that they would take care of themselves.  It was time to let them practice all that we have taught them.  Maybe in the end, this will give them more confidence and they will be more consistent with their care overall.  At the very least, it will give me more confidence that they are more than capable without those annoying reminders I can't seem to hold back.  Keep in mind, I still have TJ at home so I am not diabetes free and still have had plenty of opportunity to exercise my inner control freak!   There is also Troy, who insists I never miss a chance to tell him what he should be doing!

The bottom line is that I am so proud of them.  I am not sure, in the same situation, I would have dared fly across an ocean.  Heck, I don't even have diabetes and the idea of flying across an ocean makes me queasy. It's that OCD thing again.  By all indications, they are literally having the time of their lives.  My two T1 girls side by side with their non-D sister experiencing the world.   I envy them that, their ability to go with the flow. Granted, they each approached this trip in a different way and with different expectations.  I have no doubt when they return, they will all be looking at the same picture but seeing a different story and that is how it should be.   I can't wait to hear the stories, to really listen to them and not ask the questions about diabetes that lurk in the back of my mind like a storybook villain.  These two weeks have made it painfully clear to me that my kids most certainly do not allow diabetes to slow them down.  I find it embarrassing to admit for all my talk about letting them be "kids first" that way too often I begin a conversation around a diabetes question.  Maybe I am letting it slow me down?  I am not making any promises about being entirely hands off.  After all, I am a mom and will be watching from the wings ready to jump in and save the day,  but I am going to make more of an effort to let them drive what they need from me.  These girls have lived with this disease for so long that they don't know anything different. They have grown with the support of some amazing health care providers, teachers, mentors and friends.  It might be time for me to learn from them and take as step back and trust what they know.  I am excited to discover what these amazing young women will teach me.

We did it!

Well, we did it- we got one of our offspring to adulthood! Whew- it's a lot harder then they make it out to be when you read the "What to Expect" books when you are 8 months pregnant.  I notice they quit writing those after "The Toddler Years."  Is that because it is basically a dice roll every single day?

For example, I remember at age 18 months, the first time Tylie got really sick and projectile vomited EVERYWHERE.  I could do nothing but surround us in towels and hope the volcano would stop.  I clearly remember thinking to myself while holding back the gags, "They do NOT tell you about this stuff in the books!"  Then there was the time she fell off the couch and into the coffee table.  No skin was broken but the swelling on her forehead looked like a Unicorn's horn!  As luck would have it, that same day she had some sort of allergic reaction to a bug or a plant and her right I swelled shut!  I took her into the clinic because I thought her brain was swelling from the fall!  Thank God for Benadryl!  Back then we could give that to a kid under age 4.  Thinking about this now, it is shocking that we chose to have three more of these little creatures!

Speaking of age 4...that was the year of the big D diagnosis.  When I held that newborn tiny baby swaddled in my arms I never imagined that a short 4.5 years later I would be watching as the nurses swaddled her again and struggled to get in an IV.  I can still see the procedure room.  It was blue, with fish decorating the walls and ceiling.  Relaxing, right?  It was designed to keep a child's mind off the procedure about to happen.  A side effect is that I hate fish...and aquariums...and IV's.  That room is the turning point; the moment "pancreas" was added to our list of parental roles.

Life moved on and we made it through the typical experiences- friendship troubles, middle school, driver's license,  high school, hormonal fluctuations, Algebra II, sibling rivalry (close calls there!), and fender benders. We have survived- or I should say SHE has- moments when I could have strung her up by her toes.  For example, she gives me parenting tips, directions on how to drive to the eye doctor's office, and questions my every movement while blatantly ignoring my suggestion to follow up on her college application.  Really? However, I am able to overlook some of that when she helps me make good choices by picking me up from the Ground Round after I have had a beer or two. Better safe than sorry, right?  We  have made it through a few more hospitalizations, an allergic reaction to Vancomyocin, and blood sugars so low I can't believe she was talking! I don't think I can say we have a full fledged grown up yet, but I think she is on the right path. Last night, she text for permission to sleep at a friends.  I told her she didn't need my permission anymore, but I appreciated knowing where she was in case I ever needed to send the cops looking for her. (I stole that line from my friend, Traci!)

As I write this, she is 18 years and 1 day old.  Thirteen and a half years ago, this point seemed so far in the future and faced with a new world of insulin, blood sugars, needles and keytones, I could literally not imagine what this day would look like. Ten years ago, we thought our life had become so much easier because there was a new long acting insulin called Lantus and we could use insulin pens instead of drawing up a shot cocktail.  Six years ago we introduced the freedom of the insulin pump to our lives.   Two and half weeks ago, we were at Capitol Hill, speaking to members of Congress and today, she is writing her own letter in support of the SDP.  Her next milestone birthday is age 21.  Maybe she will be given a cure for that one! Until then, we have 3 more kids to grow and many more battles to fight.  But, we will take a minute to pat ourselves on the back for how far we have come!

If you haven't yet...


https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=384

Ordinary Extraodinary

My friend, Jenni, talked me into going to a two day class this week.  She didn't have to twist my arm too hard as it was a class about writing.  The timing was good and I thought it would be just what I needed to re-frame my teaching mind from special education to regular education.  The first day, we walk in to find the table scattered with objects: tape measures, matches, hair ties, band-aids.  Really, just ordinary things.  The prompt was to choose one of those items and write about it for 20 minutes or so.  I picked the band-aid.  Honestly, going in, I had no idea what would be the final product of this little writing experiment.  I figured I would come up with something funny as I would have to share it with these people and I didn't even know them.  My innate sarcasm usually helps me out in these situations.  It certainly wasn't the time to go deep. But, as I put that blue pen to paper, it seemed out of my control,  this story that emerged.

We called her the Band-aid Queen.  She lay reclined on her hospital bed throne wearing a crown of blonde curls and a smile, despite the tubes attached to her tiny arms.  Next to her, the ever present IV pole stood like a sentry standing guard.  Every two hours, came a person in brown scrubs pushing an ominous looking cart full of stuff.  The little girl sat, brave and stoic, while the person poked her finger and milked a drop of blood.  The drop registered on a machine to tell us if her blood sugar was high or low so we could determine our next course of action.  The little girl didn't care why, to her it just hurt.  That is until the person in brown smiled and offered her a Band-aid.  The smile returned to her face and her eyes lit up as she chose bright pink to compliment the yellow, green, and orange already adorning her delicate fingertips.  To her, that pretty little Band-aid made things all better.  To me, that Band-aid was resilience.  

Thirteen years later, I am watching that Band-aid Queen, her blonde halo still intact, struggle with where to go next in her life.  I wish that a simple pink Band-aid would return her twinkling giggle and her confidence in life.  Despite the knowledge that this time a Band-aid can't literally, "make it better,"  there is comfort in the knowledge that resilience still stands guard.  

That is what I read to the group, feeling slightly embarrassed.  The writers before me were humorous and fun.  I have no idea why these thoughts had chosen  now to flow like a river in front of virtual strangers!  But, that is the magic of writing and maybe even life, isn't it?  You just don't know the stories you can tell.

As a side note, Tylie chose her college today and decided to attend BSC for a year. She has huge hopes and dreams and can't wait to get them started.  It was difficult for her to start small and stay at home for a year.  Her fingers are no longer decorated with colored Band-aids but she wears her resilience like a badge.  I can't wait for the rest of her story!

A Day in the Life...

Yesterday T1D, Celiac and 3 teenage girls completely kicked my ass!  Let's rehash- shall we?

First, I woke up in the morning to the lovely sounds of whispers in the distance.  Only they weren't whispers so much as roars and the distance was only about 5 feet!  What was the problem, you may ask?  Well, of course it was the hair straightener and that dreaded act of waiting for it!  Somehow, it escalated to World War 2,627 and woke up TJ- poor kid, never needs to set an alarm.  This was followed by something about wearing jeans or shoes without permission,  me liking one better than the other,  why don't we ever have anything good to eat, where are my car keys, can I have some money...you get the idea.  Finally, I escaped out the door to work with a little bit of self-esteem and patience remaining.  You would have thought I was safe!

At work, the first order of business was a presentation by two young boys with Cerebral Palsy.  Considering  my emotional morning and the girls impending appointments with the CDE, the timing was bad.  It is never good when the teacher is in the back of the room crying.  I was never at any point thinking, "Oh, my kids could have it so much worse."  Instead, I was thinking of those boys' parents, of how exhausting some days can be, the constant list of needs and appointments and frustration.  As the presentation ended, they showed a slide show of the boys - in their wheelchairs- doing things like riding in a boat, skiing, sledding, fishing and above all smiling, always smiling.  They did not let their chairs slow them down, just as mine do not let their pumps get in the way.  Realistically, I know they do not smile everyday, just as my children do not.  But, it struck my as amazing that despite all they do and go through just to get up and get ready for a day, that they choose to smile.

With renewed optimism I set about looking for a a possible solution to stop the incessant fighting at my house.  For the last year or so, we have been trying to figure out how to put a 5th bedroom in our semi-finished basement so that Tessa and Taya would not have to share.  While my homebase kids were reading, I was also reading- about DIY projects.  Just when I am thinking I have found a solution, my email dings.  Did TJ bring a lunch today?  It's pasta and his teacher is concerned.  Of course!  I knew I had to leave for work early in the morning so I packed it the night before and left it in the fridge- where it still was apparently sitting!  GRRR- off to find that bag and deliver it before lunch !  It was beginning to feel like a Monday on a Wednesday and some of my new found optimism diminished.

Meanwhile, regarding the Diabetes Educator after school, Tylie was going to go by herself to the appointment as it was just a pump check up and I couldn't get out of work to be there at 3:00.  Taya, I planned to meet for her appointment at 4:00.  Through the course of the morning, she had informed me that she did not want me to go.  I was okay with Tylie by herself as she is almost 18 and will need to learn to do some of these things independently over the next few years (OMG, scary, another blog!).  But, I didn't want Taya to go alone.  For one thing, she keeps too much of her feelings inside and I don't want her to think of it as being alone.  Secondly,  I am just not ready for her to be that independent.  So, we are having a mad text messaging war and finally, she admits she doesn't want me to come because she knows it will be bad.  Again, this is exactly why I want to be there and she agrees to let me go.  She was right, it wasn't awesome, but it wasn't the worst either.  Our CDE is so good with her.  She never fails to find one positive every time we see her.  A few years ago, we had an educator that was like a military drill sergeant and when even Troy cried at an appointment and refused to go back, it was time for a change.   My dream, however, is still to get through an appointment without tears- well, that and a cure so we wouldn't have to be there at all!

Next on the agenda was to take Taya shopping for some "new room" items, followed by another doctor visit for Tylie.  Pneumonia take three for her this winter!  I won't list all of our winter ailments on top of the usual scheduled visits but honestly, I should get paid for my time in the Sanford waiting rooms and the pharmacy.  This was followed by a shopping trip to make sure Tylie and Taya (and their dad!) had all the food supplies they will need for their weekend in Minneapolis.  At 8 pm, I pulled into the driveway.  Thank goodness Tessa had found the perfect track shoe the previous night so I could actually go home!  It was time to kick back and put my feet up!  Ha ha ha- of course not!  We double checked set changes, insulin, strips, batteries and meters for the trip. Then we went back to the store to pick up the big item for the bedroom we couldn't fit in the car the first time around and a new Sioux sweatshirt for TJ for the big game today.  Lucky for me, this trip was just Troy and me and it ended with a margarita and an appetizer!

Parenting is hard business.  I have no doubt I would make just as many mistakes- maybe more- if they didn't live with chronic illness.  Some of our daily issues are "normal kid stuff."  But, I wouldn't be honest if I said there were days that the "chronic" part didn't drag me down.  It's impossible to smile every minute, everyday but like those boys on their boat or my girls in the shopping mall, or TJ on the rink, we can try for most!  Today is a new day and I tried to be proactive about my stress relief by going for a run.  As for yesterday, thank God for that margarita and this laugh- and assurance of bail money- provided by my friend.