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.  

Really Aware

November is Diabetes Awareness Month.  I started out the month with the best of intentions.  I wanted to use Facebook as a way to educate people about what it was like to live with Type 1 Diabetes everyday.  That there is no vacation, that it's hard work, that it's exhausting, that it's frustrating, lonely, sad, painful...  But, somewhere in the month, I got too busy with "living" I didn't get time for the posts.  When I stop to think about it,  I still think it is important for people to realize the day to day challenge of living with such an disease.  However, in living our lives, I became more aware of not just the hardships of this crazy disease but the unexpected and random blessings.

We have met some amazing people that we never would have had the chance to know if it weren't for diabetes.  Last night, I got a call from a mom whose 9 year old daughter was diagnosed with T1 and Celiac this summer.  I have never met her before and, in fact, this was the first time we had talked. Within minutes we were laughing like old friends.  Why? We have something in common that no one can really understand unless you live with it too.  Who else would get the humor in your kid yelling, "Hey mom!  I'm high!" and having the strangers around you look at you like they are considering calling social services?  And then we sighed in understanding when we discussed the expense of gluten free bread and the challenges of trying to make it yourself.   Then there is the group of families that I have met a few times at various events for diabetes but have not ever connected with on a regular basis.  I might never actually meet some of them in person but when I read a post and hear about their challenges and their joys I feel like I am right there with them crying or celebrating.  I know that if I need something- help with a kid, a partner in misery, a voice of reason- they would be there.    That gift of connections goes for my children, too.  Through Camp Sioux they have made lifelong friends, built their self-confidence and know that they don't struggle alone. Their health care providers never fail to hug and encourage them.  The nurse at school is simply the best.  Even the managers of restaurants who care enough to come out and meet the kid they are making the special meal for and to make sure his food gets to his table safely.  We have also re-established connections.  It makes me sad to think that I might have lost touch with a good friend forever if it hadn't been for her daughter's T1 diagnosis.  While I would never wish T1 on anyone, I am thankful to have her back in our lives.

Two nights ago, in the middle of a set change, I caught the whiff of the insulin as it dripped from the plunger.  My first thought was, "I hate that smell."  My second thought was, "What if this wasn't an option?" So, yes, I hate the set changes, the pharmacy visits, the constant doctor appointments, phone calls, pump uploads, blood draws and all the rest that comes with the medication but I certainly can't hate the thing that gives my kids the options that they have!  This clear little liquid gives them a chance to play hockey and baseball, run, dance, be active in school, participate in DECA,  have a social life and just "be".  That little box they wear is not a beeper or a cell phone but is much more valuable- it's their pancreas.  As TJ pointed out once, "Diabetes isn't great, but I do get to wear this awesome machine!"   These two things put together are not their cure- oh, how I wish they were- but they give them the choice that not everyone has and for that I am thankful.

Over a year ago, the mom of a player Troy had coached called me out of the blue. (Again with the past connections.) Her 3 year old granddaughter had been diagnosed with T1 and she wanted to be actively able to help when she went out to California to visit.   She came over and met the girls and TJ and they talked to her about how they live with diabetes.  They were honest with her about it being hard and that sometimes they hated it.  But, when she asked if it limited what they did and their choices, their answer was, "mostly no."  The girls gave her some of their children's books about diabetes,(TJ didn't want them- they had girl main characters,eww!) a little stuffed bear, and a backpack they had gotten from Camp Sioux that was pink for her to take to California and share with her granddaughter.  She called me a few more times with questions throughout the year.  This spring her granddaughter was also diagnosed with Celiac so we talked about that and how we meal plan and the difference in carb counting and gluten free food that is kid friendly.  I have never felt that I went out of my way or that she inconvenienced me by asking for help.   So, I was quite surprised a few weeks ago when she showed up at my house with a story.  She said she felt grateful that she and her husband are able to help her son pay for their granddaughter's medical care.  She told me about how when she was young she was very poor and it always had an impact on her and that she felt now that when she could give back it was important to do that.  She thanked me and we chatted a bit longer.  As she left, she handed me an envelope.  I assumed it was a gift card to Starbucks,  imagine my surprise when I opened it and found cash!  And, not just a few bucks!  I was shocked!  Nothing I had done warranted that kind of reward.  I felt that I should give it back but when I told Troy the story he felt that she would be insulted, she wanted to give the gift.  The incredible thing was the timing.  That very week we had had to make some unexpected repairs to a car we had not planned for in our budget.  Her gift got us by in a tight time and hopefully taught my kids a lesson in giving back.

As Diabetes Awareness Month comes to an end and the holiday season rolls on, I am going to make a more conscious effort to be more aware of the positive things.  I would like to ask the kids more questions about their day that doesn't involve diabetes management.  I am going to try to not just focus on those missed finger pokes or boluses but instead cheer on the two extra she managed the previous day.  I am not going to focus on the sleepless nights or the roller coaster blood sugar readings but be happy that today no sites fell out at inopportune times.   I will smile and nod at the annoying parent at hockey practice who can't quit talking about how busy she is while in my head silently praying a low blood sugar doesn't ruin my kid's time on the ice.  Sadly, Diabetes isn't going to go away tomorrow.  I will continue to do what I can to try and give people a realistic picture of a family living with chronic illness.  We laugh, we cry, we yell, we scream- and that was just today! It's easy to be aware of the hard stuff- it's always there, right in front of us or in the kids' case, attached at the hip, literally.  But, along this unpredictable road, our lives have been touched by some amazing people who remind me to also tune in and be thankful for the hidden blessings.

Looks Like We Made It!

Well, we survived our 10 day family vacation!  Actually, I think I had built it up to be this overwhelming, impossible experience so that when nothing major went wrong it was just plane fun.  Judging by the regular luggage in addition to the 2 boxes of food- with and without gluten, large bag of D supplies, and cooler of insulin I would say I maybe over packed! But, better to be safe than sorry, right?  The car ride did get a bit long at times, but the kids got to see parts of the country the wouldn't otherwise have a chance to see.

On our way out to California, we stopped in Vegas for supper.  We drove the strip so they could see the sites.  It took longer than anticipated, as you know there is a lot to see!  Everyone wanted to eat at In and Out Burger.  So, we chose one on the edge of town, thinking it wouldn't be as busy.  It was a good plan, except we got lost and ended up right by the strip in the busiest, most ethnically blended joint ever.  My girls were a bit overwhelmed.  Tylie had on yoga shorts and was afraid she would be under-dressed and didn't want to get out of the car. After her father and I assured her she would not be the worst dressed she did agree to go in!  As a people watcher, I thought it was great!  As a  mom, I was also thoroughly disgusted by the icky bathrooms and the close proximity to all these strangers.  However, we survived and I was quite impressed with how careful they were with TJ's meal after I told them he was gluten free.  Tylie was also happy as she has "cut back" on bread and really enjoyed the burger Protein style!

In general, I worried most about TJ's eating and really shouldn't have.  Once we got passed Idaho, people are pretty aware of food allergies and most places we stopped not only had a menu but automatically asked us specific questions or sent out a chef or manager.  It was refreshing not to look like the neurotic mom looking for special treatment!  In fact, at Disney somehow we ended up with an extra kids meal. In the process of getting all 6 of us settled, I mixed up the boxes.  I went to an attendant and just asked if he could confirm the bun, as I was pretty sure I knew which one it was but needed reassurance.  Before  I knew it I had 3 managers and a cook beside me!  In Hollywood we ate at a Mexican place.  At the place we usually eat in town, TJ can have the tortilla chips so we didn't even think to ask.  A man at the table next to us had overheard our order and informed us that the chips were fried in oil with floured items.  TJ was disappointed but got over it when his corn tortilla quesadilla arrived.  It is now his new favorite thing.

Diabetically speaking, we had no major issues.  The kids didn't complain when I asked them to check blood sugars, all pumps worked as designed- even after one took an accidental dip in the pool- and blood sugars were all relatively stable.  The day at the beach is always my most nerve wracking day since they are unattached for so much of it.  But, as it turned out the waves were harder on us than our chronic health issues.  And, I guess this isn't a bad thing!

Back to School

School starts next week.  I seem to have blocked this from my mind and all of a sudden here it is!  So, today I have been making lists.  School supplies, D supplies for school, Gluten free snacks for TJ, touch base with school nurse, forms to dietitian, update health plan...you get the picture. 

We have been pretty lucky, I think, with our school experiences.  Thinking back to Tylie, her daycare provider  and preschool teachers were right at the hospital with us learning to count carbs and treat highs and lows.  When she started kindergarten, there was no school nurse, but we met with school staff and created a health plan that worked.  At that time we were still mixing "cloudy" and "clear" and she did not get a shot at lunch time.  Wow- we have come a long way!  We did have some struggles with Taya.  She told me- way after the fact- that the teachers at the daycare she went to before kindergarten would make her eat all by herself.  They said she ate too slow and they couldn't keep track of it in the big group.  She hated going to this center.  But, we always thought it was because she went there alone, without any of her siblings.  It wasn't until recently that she even told me about this memory!  If I had known I would have pulled her out of there so fast.  I still drive by there and want to march in and ask what they were thinking!  She told me of teachers that made her walk up and down the hall in an effort to lower her blood sugar.  She has always been so secretive about having diabetes and these two stories showed me why.  She is slowly working her way through this and having an insulin pump has really helped her to be more compliant.  This is not to say she doesn't struggle but we see progress.  While Taya likes to pretend she doesn't have diabetes, Tylie has been known to use it to her advantage.  Her 5th grade teacher told me once that Tylie was always low at music time.  Well, after some investigation it seems she didn't really like music.  But she really liked spending time in the classroom with her teacher!  But, overall, their experience was good, particularly in elementary school.  The teachers were open and willing to meet.  I came into the classrooms and talked with the kids.  It still breaks my heart when I hear the bad experiences that others have had. 

When TJ was diagnosed he was still at the daycare the girls had attended and T was more than willing to learn how to give shots and get a refresher on fingerpokes.  He also attended a preschool.  There they had not previously had any children with diabetes but the director had gestational diabetes with her last pregnancy and agreed to give him his shot at lunch time.  For kindergarten he attended the same school the girls had but now there was a nurse!  Wow- is she amazing!  She is as irritatingly organized as I am so she double checks everything.  I love it!  When he was also diagnosed with Celiac she contacted the school district dietitian and helped us create a plan so he could eat lunch at school most days of the week.  This year she is as excited as I am about no shots but I have no doubt she will monitor him with his pump just as stringently. 

They have all had their back to school appointments so basals and bolus' have been tweaked.  Now I will work on updating health plans and packing tubs of snacks to take to the class open houses next week. I still will worry if their blood sugar got checked before lunch or if they remembered to bolus or if the teacher remembered to grab TJ's juice boxes for the field trip.  But, I am thankful for the support we have and the plans in place.   The big girls are lucky enough to have their parents teach in the buildings they go to school in so we will go shopping for a stash of snacks for there as well.  Actually, I kind of enjoy the times they have to come to my room because their blood sugar is low.  They usually bring a friend and you can learn a lot about them they don't normally share! 

My goal for this school year are for the big girls to consistently remember to check at lunch time and in the busy mornings.  It is difficult with teenagers because if I remind them, they are annoyed that I am treating them like babies. However, if I don't they "forget."  I don't think that battle will really end, but my hope is that they get to a point where they don't need me to remind them.  Taya actually has a pretty cool plan.  She has a spare meter she put at the end of her bed with a note to herself saying, "Check!" with an arrow pointing down.  It will be the first thing she sees when she wakes up and the last thing she sees when she goes to bed.  Tylie also makes lists.  They have both made huge gains in this area so I am really hoping for the best A1c's ever at their next appointment.  As for TJ, my biggest worry is actually school parties and snacks and more related to gluten than to insulin.  And I will write more about that later!