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!

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...

2:30am

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

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!

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: http://www.youtube.com/watch?v=vi-QAcZAH7Q.   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?

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?