Thursday, November 29, 2012

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.

Wednesday, October 10, 2012

Again with the Roller Coaster

So all last week I wanted to find time to blog because things were going great!  I wanted to quick write about it so that I could remember the good feeling before things came crashing down again.  Of course, I did not find time and of course, we are having one of those weeks when diabetes sucks even more than usual and I desperately wish I could get back that "feel good" feeling!

Taya had an appointment this morning.  She was excited to go as she got her new meter and she has been really careful this past two weeks to be taking good blood sugars so we would have information to present to our educator.  Well, we get the print off and it seems her pump has been malfunctioning on and off and we weren't aware of it.  The printout had several rows of clocks- meaning the time was somehow off and so blood sugars and boluses didn't upload.  The days that it did work were great, however.  She only had two reading above 200 in the 5 days that showed up.  Unfortunately her A1c was not great at all.  She cried, I cried, the educator cried.  I am so frustrated for her.  It has always been harder for her to maintain a low A1c.  She never has the drastic highs and lows of her sister, which to me should be a good thing- but she is just never able to get it down where we want it.  We have tried monthly appointments, uploading every two weeks, various pump settings, on and on.  We have not tried sensor because she does not want to be hooked up to one more thing. She is active in sports and I don't blame her at all.  I just want to make it better for her.  She recently did a research paper on T1 for English and while the complications seem light years away for her, she was made much more aware of how devastating they can be.  When I leave appointments like that I am so angry.  She is 15 years old and has been dealing with this for 11 years.  I just want her to get a break somewhere, sometime.  It makes me sad that a hug and a kiss won't take the pain of this away as if it were a skinned knee.  She works so hard at school and sports and diabetes and just being a teenager.  I tried to tell her that it's impossible to balance all the balls all of the time and she needs to be proud of the little things and we will keep working on the rest.  But, I see her frustration, her anger and her sadness in her eyes.  I so wish I could take it away.  I don't think she has any idea how her real, genuine laugh brightens my day- mostly because it's such a rare thing.

Meanwhile, I got a call from TJ's school.  His blood sugar is over 400.  No rhyme or reason there.  It was normal when he had breakfast and I sent venison jerky for morning snack so there was absolutely no reason for a spike.  Got a call a few minutes ago and it is still over 300.  Guess we will be doing a change and hoping that he is not getting sick. He told me the other day he would keep his diabetes if he could just get rid of Celiac.  Most people who aren't aware of T1 believe that the diabetes would restrict his diet more than gluten.  Not that I promote junk food, but how is he going to feel when he is 15 and can't even go through the McDonald's drive thru?  You can always correct for carbs but you can't take the wheat out of a bun!

My friend posted something about it being easier to nail jello to a wall than manage diabetes.  Yep, totally having one of those days.  At times like this it is easy to let my mind wander to all the things that can happen.  We are touring another college next week for Tenley.  There comes another set of worries.  Taking care of people with chronic illness is hard work and there are times I feel completely weighted down by it all.  But, putting myself in their shoes I am so amazed at how they persevere.  I can take a night off, they never can.  And even in the mist of a bad day like today, I see their optimism.  Tori wants to work in the medical field.  She wants to make this better for others.  It broke my heart when TJ came home the other day and asked me if Diabetes was a disability.  I am not sure who told him such a thing but I wanted to kick their ass! He wants to teach his friends about T1  and Celiac and tell them that they all have special things about themselves.  He is a bigger person than me!   Tenley is ever hopeful in her view of the future that includes travel and big cities and adventure.  The same friend told me today that there will be curve balls and we can't be perfect all the time. We just do our best.  There is hope in that statement and I guess the bad comes with the good, right?

Oh, the good news from last week- insurance approved new pumps for the girls,  Tylie and Taya were elected as officers for DECA (treasurer and VP respectively) and Taylor got elected to student council.  I really am proud of my kids- all of them!

Monday, September 17, 2012

Earning our Money

Some weeks it is harder to be a parent than others.  As my husband said, "We earned our money this week!"

Well, on the non-D front, Tessa decided skating was not her thing anymore.  It wasn't an over night decision and she cried a lot of tears.  She had actually started talking about it this summer, but we talked her into continuing since she had tried out for the team and others did not make it.  I honestly thought once the program started going, she would be back on board.  However, once school started, she also wanted to play volleyball.  For the past few weeks she has been doing both, nearly every day of the week, plus school work.  In order to continue skating, she would need to miss 6 games to attend synchro practices.  This was the ultimate dilemma.  I agree that she committed to her synchro team, but skating has become a year round sport.  I think it is unfortunate that at age 12, she had to make such a choice- between games of the sport in season and practices of the winter sport.  She felt pressure from both sides- not wanting to let either down.  Had she not been able to say specifically why she wanted to quit, I think we would have made her stick it out.  However, there is a fine line between forcing your child to do something and causing them to dislike it even more and allowing them to make a change they have considered carefully and let them deal with the consequences.  The kicker was when I came home from a Synchro meeting.  At the meeting, many of the girls had come even though it wasn't required.  They were excited about everything the coach had to say- you could see it on their faces.  Tessa used to look like that.  When I got home and shared the information with her, she started to cry.  That is pretty telling considering how excited she used to get about skating and competitions.  After several hours of discussion between mom, dad, and Tessa, she felt pretty sure that quitting skating was what she wanted to do.  She wrote her coach a note expressing her feelings.  She originally planned to meet with her, but that didn't work out.  I was also disappointed in some aspects of how her coach handled it.  But, overall, there has been a definite change in mood for the better so it was probably a good decision.

Then there is the impact of technology.  This has affects our lives everyday, but this week seemed to have an even greater impact, particularly for Tylie.  First, I will just skim over an episode she had involving friends, former friends, text messages and Twitter.  The handiness of having technology readily at your fingertips leads to some impulsive actions that in the end, hurt more people than just yourself.  It is hard to explain to a child the art of patience in a fast paced world.  Which leads me to our other problem- the insulin pump.  The gift and the curse of technology according to Tylie.  She is currently using a loaner pump as hers malfunctioned this summer and the warranty had expired.  For insurance purposes, she needs to be checking her blood sugar consistently to demonstrate that she uses the pump and it is effective in her diabetes management in order for a new pump to be covered.  At our appointment with the diabetes educator, Tylie stated she wanted to go back to shots.  In her mind, she feels it will be easier.  My heart hurts thinking of her returning to shots.  I believe that she remembers them to be easier because it was her dad and I doing all the math, taking care of morning and bedtime, and much in between.  She did not drive, or spontaneously go out to eat, or babysit.  I don't believe she knows the impact and the time commitment required to be "good at" shots.  Her main complaint is that she hates to be hooked up all the time to something.  I really do get that as I can't imagine it myself.  No matter how you look at it,  diabetes is an inconvenience.  There is nothing fun about it- especially if you are a teenager.  I would give anything in the world to be able to give her and and her sister and brother even one day off from dealing with highs, lows, and set changes.  But, the idea of her going off of the pump after it has allowed her to have less night time lows and stable A1c's for the past five years makes me physically sick.  We had a good discussion during which I was impressed that she allowed me to say my peace and not snap at me.  I told her that I was very proud of where she was at and acknowledged that many teenagers are in a much worse place than she is- and they don't have diabetes.  I tried to express my fear without frightening her and to have her recognize the importance of the control being on the pump allowed her.  We reached a compromise that she would do what she needed to do to get a new pump.  If she wanted to take a "pump vacation" we would meet with the educator and set up a plan.  That way, she could make an educated decision without losing the option of the pump.  I know that it is her life and she is 17 years old.  She will need to start making decisions on her own and since she is the one that lives with this on a daily basis I will need to respect that decision.  There will come a time that we will just have to trust that we raised her with as much information as she could get, enough self-confidence that she can get through the tough teenage times, and enough strength to make the right choice, even though it isn't the easiest. I guess that last statement applies to more than just diabetes and more than just one child.  Sigh...

I have to end on a humorous note, however.  On Saturday, after this stressful week, I had lost my battle with the messy house which also resulted in me losing my temper.  As a result, the kids were asked to do some tasks they dislike which lead to much disgruntled arguing with each other and complaining to me.  This did nothing to ease my mood.  I was talking to Troy and said, "This morning it felt like they were sucking the life right out of me!"  He replied, "Fun suckers!"  to which TJ chimed in, "Suckers!  I want one!"   Nothing like a little kid's innocent comment to relieve tension!

Tuesday, July 31, 2012

Thinking ahead

Last week, I had the opportunity to spend a few days with just my with my two oldest daughters.  It was a very interesting experience. The primary purpose was to tour a college Tylie is considering.  It happens to be where I went for my undergrad degree.   For some reason, I found it to be very emotional.  Much more so than I had anticipated.  It was so strange to be in that setting with my children and realizing that one of them would actually be old enough to attend there next year.  Just yesterday, I was skating down those ice covered sidewalks- how could I possibly have child old enough!  I told my husband I was glad he wasn't along, I probably would have cried.  As it was, I did tear up but managed to cover it up by claiming allergies.  Some things were so exactly the same that it was a little scary.  But the growth and opportunities available have greatly increased.  I was really impressed that the food service program posts meals, has options for gluten free, and there is a nutritionist available if there are questions.  Of course, I didn't even tell the kids how excited this made me and I am sure they would never in a million years go to see her, but still, it made me feel better.  Going into the tour, Tylie was very reserved but going out, I was pleasantly surprised that for the first time she actually seemed excited about the prospect of college.  Taya was wishing she was the senior!  As we left, I had to say to the girls that I was quite proud of myself.  I didn't think I was the most embarrassing parent there at all!  Both of them agreed, possibly because I was taking them out for Sushi and they were afraid I'd change my mind if they disagreed!  Overall, it was a very fun weekend and I am glad we had the opportunity to have some relaxing fun.  We had pedicures, shopped, ate (a lot!) and talked.  Being away from home and the younger kids seemed to take some of the pressure off and they girls even managed to get along for the majority of the time!  I have to admit if Tylie won't agree to start out at the 2 year college at home, I hope she goes here.  At least she would be close to family and not so far away that we wouldn't get to see her.  It would also be close enough for her to continue to see her care team here.  I try not to say anything to them, but this is a worry for me.  We have had such excellent care from people that have become like family and it worries me that in a sense, at some point they may have to start over in this respect.  But, I will save that worry for later.  For now, we just have to get her to think beyond the next 5 minutes!

Tuesday, June 19, 2012

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!

Monday, May 7, 2012

Confidence and Questions

It has been a very busy spring.  It surprises me because our really busy sports season is over, but with that there are banquets!  Taya also was confirmed this weekend.  It was good to have friends and family join us to celebrate.  Taya's Godmother I have mentioned before.  In the course of life, we had lost touch for a while.  Then, in an unfortunate twist, her little girl was diagnosed with T1 last summer.  I feel fortunate to be back in touch with her again- I just wish the renewed connection wasn't because of diabetes!  It is really a strange little circle, full of odd connections that 14 years ago we could never have expected or predicted.  I know that my friend worries constantly, we all do. But watching her little girl this weekend, it is very clear she is doing amazing!  She has not even been diagnosed for a year and is barely 5 years old and she gave her own shot!  To have that confidence has to come from the incredible care she is getting from her family!  She is a Rockstar and so is her mommy!!!
TJ and Addison- taking a break from the trampoline to check blood sugar! 

Between the Confirmation, spending time with family and friends, and the school year ending soon, I have become very reflective in my thinking.  Our oldest, Tylie, will be a senior next year.  She wants to go to school in California.  Wow- that is far away!  It has now occurred to us we will face new challenges as a parent of a child with Diabetes.  What kind of medical care will she get when she is not with me?  Will she remember to check her blood sugar?  Who will be there in the middle of the night?  The list of questions goes on and on until I literally can't breathe with panic.  I remember dropping each of them off at preschool for the first time with the T1 diagnosis and thinking it was the longest 4 hours of my life until I could see them again and be reassured they were fine.  How in the world will we survive dropping one off at college?  To try and relieve some of that feeling, we have decided to take a family trip to California.  We will be driving cross country-yikes!  It should be an interesting experience!  We will be visiting family, seeing the ocean (TJ's first time!), going to Disneyland and touring the college of Tylie's choice.  Yes, my lists are already growing and I will do my best to keep you updated on this particular adventure as I am sure it will be one!!!

Back to my reflection-  Our educator always tells me she can tell when kids will do well.  She noted, ALL kids will have good and bad days.  Sometimes these days last weeks or months but she says can tell when a kid will be able to overcome these tough times.  When I took the picture of  TJ and Addison, that was my thought- These kids will be okay!  At least I hope that as parents we have and will continue to instill and support them so that they can be confident, resilient and strong enough to overcome the bad days.   In regards to the older kids though, I came to the realization that it is going to be scary- it has been scary for the past 12 years so I am not sure why I ever thought it would change as they got older!  I think sometimes with the older two, I get lulled into a state of "comfort".  They don't tell me everything about their daily care.  I usually know if they have been consistently too high or too low, but for the most part, they are very independent.  It is really a tight rope to walk between being too invasive and smothering them and being too complacent that they "forget" the importance of that annoying little finger poke!  Over all, our kids have set some high goals for themselves.  I know that they see diabetes as an annoyance, as a thing they would like to go away.  However, I don't think they see diabetes as a handicap.  Failure in their goals does not seem to occur to them.  Another tight rope- to explain to them how much I want to see them succeed and at the same time to urge some caution because there are things they need to consider that other children their age do not.  And, what I wouldn't give to not have those things be an issue!  Oh, to have all the answers!  For now, I will settle for uploading their pumps tonight so I can see how they are doing and either be reassured or not...

Friday, March 30, 2012


One child up throwing up -blood sugar 375. Meanwhile, another child is low. Mom scurrying about, cleaning up puke, completing a set change, serving cereal. Dad and other kids snoring peacefully. Low blood sugar corrected and tummy settled - all kids. return to sleep. Not mom...wide awake! Sigh

Tuesday, March 20, 2012

Spring Fever in March

Again it has been a busy couple of weeks!  Taya's hockey team got 3rd in state so her season has wrapped up. That doesn't mean she is done- just on to off season practice.  She has decided no soccer and is going to focus on hockey and volleyball and school- okay, she didn't say school, I added that and really, she has some fabulous grades this quarter!  Tylie did very well at State DECA.  Her team placed second in the Apprenticeship Challenge and she placed first in a role play and 3rd overall to qualify for Nationals in Salt Lake.  Pretty exciting- if only she could pass Algebra!  She will be starting soccer soon.  Tessa wraps up her regular season with the ice show this weekend.  It should be a fun show.  She is still skating in April for Synchro tryouts and to try and test two tests before she gets a break until summer.  She made a really cool mosaic for her Roman/Greek project and it was fun to work on it with her.  TJ finished up his regular season of hockey with his tournament last weekend.  He had a very fun year.  My favorite was when he scored a goal from what might be considered the point (it was a small game). He shot it in, celebrated, and booked it to the net when he realized he was supposed to be goalie that shift!  We are sad to see our backyard rink melt away- or evaporate as my husband says- but happy to see strangely warm weather we have had this March.  We are also getting new windows in part of our house, which I am really excited about!

On that note of spring fever- we are all suffering!  It is hard to focus on school when the weather is so great!  We only hope the weather is still great in July!  As a teacher, attitudes are going down hill and we still have 9 weeks left of school.  As a parent, they are going downhill at home, too.  Homework is just not high on the priority list.  Additionally, with three girls- 2 teenage and 1 tweenage- I wonder how I can be a teacher of Emotionally Disturbed students and a parent!  There are days it is like never leaving work!  Most the time, I like to think they are pretty good kids but there are days I would like to give them up for adoption!  For example, one morning one was yelling at another for taking some item of clothing, another couldn't find her shoes and was crying and the third was lying on the couch because she felt like she might die.  Meanwhile, my 7 year old son was happily doing an art project at the table.  After a while he hands it to me- it is a volcano!  Not sure he saw the symbolism in that but it made me laugh!

On the T1 front- we are hanging in.  TJ's recent appointment had a higher A1c than I would have liked, but not bad.  The girls still struggle with consistency and compliance.  Sometimes purposeful and sometimes unintentional.  Our educator told me last week that in teen years the average kid only complies about 25% of the time.  Wow- that is low!  So, with that as a comparison, I guess we are doing okay.  The perfectionist in me would just like it to be better!  TJ and Taya are all registered for Diabetes Camp and I don't think it can get here fast enough for either of them.  We are gearing up for the Strides Walk in May to support Camp Sioux.  As always, it's an adventure!

Making Strides

It has been one crazy busy month!  We are winding down our hockey season and getting into ice show month. This always makes me kind of sad!  When we are in the thick of it I always think we need more time- it is all too rushed.  Now, with one state tournament over and another next week, I wish it would last just a little bit longer!  The other morning with all but one kid and me at home, I was ready to go in 25 minutes.  I sat looking around my house and missing the usual morning chaos.  Some good news to note for the month:  Two doctor visits and two lowered A1c's!  Not hugely lowered, but heading in the right direction.  Way to go, girls!

Our family has also been asked to be the 'spokesfamily' for an upcoming event sponsored by the local Lion's Club.  It is called Strides Walk for Diabetes Awareness.  They give a portion of the proceeds to assist the blind and a portion directly to Camp Sioux.  We met with them last week and were struck by how genuinely kind these people are.  One woman has had diabetes for 43  years with no complications.  She talked about attending Camp Sioux as if it were yesterday and her words echoed those of Taya.  It's a place where they can belong!  We often wish they could have mini-camps through out the year, just so the kids could come back refreshed.  The walk will take place in May.  They asked us to do it after reading about our family in the Medcenter One magazine.  The kids have mixed emotions about being so "famous".  Tylie has always been all about educating people, Taya is fine as long as she doesn't have to do any talking and TJ thinks it's AWESOME!  He is hoping that he gets to be on TV.  At the meeting I was touched that one of the member's thought to ask Tessa how she felt about not having Diabetes.  It is interesting to think that she has never known any other way and she seemed a bit shocked to be asked such a question.  Overall, we are honored to be a part of it and I hope we can help drum up support for such a wonderful cause!

Thursday, January 26, 2012

12 Years

Twelve years ago today we sat in a hospital room with our 4 year old daughter ready- well, "ready" or not- to start our new life with T1.  I remember the little blonde, blue eyed baby who would giggle every time Dr. T would come near her.  She was so ticklish!  She insisted on a band aide after each fingerpoke and her little fingers held every color of fluorescent by the end of the day.  It feels like yesterday and when I think of it, my heart still clenches the same way and I wish I could rewind the clock to take back all the pain this nasty disease would or could cause her. Some days are so much harder than others - there is always kind of a roller coaster - weeks of good and weeks of  anger and weeks of coasting.  In retrospect, I can honestly say I believe, in general,  she has laughed more than she has cried and that is amazing to me!   I am very proud of her and her determination not to let this disease control her life.  In recent weeks, I have noticed even more of a change in her, a maturity.  She recently  met with our nutritionist and came out of the meeting smiling!  I can't remember the last time we left the clinic with a smile.  She was excited about making healthy eating choices and had recently begun to work out with a friend on a regular basis.  The other night, she asked me if I wanted to listen to her speech for English.  It was about Diabetes and focused largely on the lack of education and money available for treatment world wide-  particularly in developing countries. Here is the link to the video she included:   It is very enlightening and heartbreaking.  It makes us count our blessings.  Twelve years later, our baby is still active, still healthy, still giggling when Dr. T needs to examine her.  Twelve years later, she meets the T1 challenge every day and she is teaching others.  With knowledge is power and progress- I wonder where we will be 12 years from now?

Tuesday, January 3, 2012

Finding a Balance

Yesterday, I got a text from a friend with a T1 daughter asking if I ever felt sorry for myself.  I had to laugh because, of course, the answer is yes!  Some days, there is little else to think about but blood sugar, finger pokes, A1c's, and the nagging doubts and worries about the future. Especially if you have more than one because it is rare that they are all having a good day at the same time!  For example, just the other day I got a call from the school for an over 600 blood sugar.  I did a set change and within an hour he was 56!  The whole rest of the day went like a teeter totter, up and down for him.  Finally got him settled into bed with a respectable 150 and one of the girls wakes up a 37 for a midnight snack.  Even with the technology of the pump and the fine tuning available, there is no guarantee of a "perfect" day.  Which means as the caregiver, we are always asking the questions:  "Did I do everything I could?  What can I do differently?"  It can consume your life!

I remember when Tylie was first diagnosed- nearly 12 years ago!- and I couldn't imagine myself with any kind of life except making sure she was safe.  For the first week, I literally hovered over her!  If I was away from her, I couldn't quit crying.  I needed to have something to focus on, so I was her shadow.  I am not sure when it happened or even how, but at some point I realized that this would not be able to continue.  For one thing, I had a 2 year old and a baby on the way!  For another, was this really helping anyone?  We were very lucky that daycare providers and family members were willing to step up and learn right along with us.  If we hadn't had that support system, I can't imagine where we would be today. It is so easy to be literally consumed with the enigma of diabetes.   The first time I left her with a sitter, I think we were gone barely 2 hours.  We timed it around insulin shots and carefully planned a snack for all contingencies of highs or lows.  Again, I am not sure when or how it happened, but at some point we realized that it was important to have a life away from diabetes.  Just as we followed the motto, "They are kids first." we needed to consider our own lives.  If we were unhappy and stressed out, than we weren't helping anyone!  We hired a babysitter for one night a week.  Troy coached hockey and I played volleyball.  After, we either met up together or went out with friends for a primarily adult night.  Sometimes we snuck in real "dates" but it was good to have a consistent time to get away for a few hours and recharge.  Now that the kids are older, we no longer need a babysitter but we do still try to make a point of one night a week as a couple.  Even if it's just late night appetizers.  While I see the importance of these escapes, it always makes me sad knowing this is an escape the kids never fully get.

The two year anniversary of TJ's diagnosis is on Sunday.  It seems like yesterday but so long ago at the same time.  I work with children who have a mental illness.  Typically, this is a familial trait.  I watch their struggle daily and always have a debate with myself as to whether if I had to choose-  would I choose mental health or physical health?  When I put these children side by side with my own- I have to pick mental health.  Yes, my kids struggle everyday.  Their life is not perfect and some days it is painful to watch their struggle.   But, they have the love and support of people, they are happy and they are able to 'be kids", which was our ultimate goal for them.  Our diabetes educator has told me a number of times when I am frustrated with the choices they are making that "they will be fine.  They are teenagers but you can tell they get it."  I hang onto those words like a lifeline and I believe her.  You can see it in the way they care for their brother.  So, as TJ and Tylie's T1 anniversary dates approach, I am thankful and hopeful.  Thankful that we were blessed with such an amazing support system.  Thankful that we have been able to recognize that it is okay to be angry, sad, disgusted and annoyed with this stupid disease and the hand we were dealt but had the strength to look beyond the anger.  Thankful that we, as adults, can also recognize there is a time to cry and a time to fight and hopeful that my children will be able to learn this from us.  Thankful for the advances in science and medicine that makes that fight easier and hopeful that in the very near future it cracks the T1 code and literally saves my children's lives.  Mostly, I am thankful for each and every day that I have with them and hopeful they recognize the power that they have over their own lives and can create a balance that works for them.

I was thinking about it last night while at the same time thinking about a young man and his family in Minnesota.  This 16 year old boy was playing in a hockey game and went head first into the boards.  The result was a severe spinal cord injury and a devastating prognosis.  My heart breaks for this family.  Faced with the idea their son may never walk again, they pray for a miracle.  Just as we do everyday.   I can identify with them on so many levels.  As the mom of hockey players, their nightmare is one I never hope to live.  As the mom of children whose lives were drastically and unexpectedly changed, I can actually feel their pain.  On his Caring Bridge site, they talked about transitioning to a "new life, a life we did not plan, but must embrace."   They tremendous support coming to this family from all over and the positive tone they have set when speaking about their son gives me so much hope for them.  It reminds me of a quote by Plato, "Be kind, everyone you meet is fighting a hard battle."  It would be so easy to focus only on yours- but at what cost?