You CAN do this

"You can do this."  I repeat this to myself almost every day.  My daughter has not taken off her "You Can Do This" bracelet since she got it.  I don't know if Kim Vlasnik, the creator of the "You Can Do This" project has any idea how many lives she is truly impacting.  The power of these four simple words is huge.

I see so many diseases and so much suffering on a daily basis.  It is hard, and perhaps only human, to look at every disease I see and not compare them to Type 1.  I am no doubt biased, but I have yet to see a disease that requires so much hourly (secondly?) work.  And, I am not sure I have found one that is so laced with guilt.  This by no means makes the other diseases easy to have.  But, Type 1 seems to be its own unique daily adventure.

It has been almost three years...there is no end is sight.  And, the mantra "You Can Do This" sustains both myself, my daughter, and my whole family.

So many normal moments that are impacted by Type 1.

We baked cookies together the other night.  I stopped doing this for at least 2 years when she was diagnosed.  I LOVE to bake (cooking not so much).  I missed it.  I needed to bring a dessert for work, and looked in the cupboard to realize decorated sugar cookies were the only option.  I didn't intend for her and her sister to help.  But, they quickly realized what I was doing, and like any eager ten year olds popped in to help frost the cookies and decorate with sprinkles.  I saw her lick frosting off her fingers a couple of times.  Who doesn't do this when they bake?  I didn't plan ahead and bolus her for this unpredictable moment.  And, I truly didn't see her take that many licks.

310.  The highest number we have had in weeks.  "I hate diabetes," Jessica yells when she sees it.  I miss when she was seven in some ways.  When the numbers meant nothing to her.  When she didn't understand what it meant every three months when she went to her diabetes appointments and heard the value of her HgbA1c.  I hate that we can't spontaneously bake and decorate cookies without later having her feel guilty.  Of course, I tell her that we only do this on special occasions, that we have insulin and it will get that number down quickly, and that this is absolutely nothing she needs to feel badly about.  And, of course, in my head I think "why didn't I bolus her?"  But, how do you judge how much frosting a ten year old might lick?  And, when decorating cookies at 8:30 pm at night, what parent wants to guess wrong only to have her bottom out later.  And, this is truly the first or second time we've done this since diagnosis, so like everything we just need to learn how to do it with Type 1 in the picture.

"You Can Do This," I tell her.  It is ok to hate diabetes.  I hate it too.  But, we had fun making cookies, and we will get this number down quickly.  And, "You Can Do This."  I see her glance at her bracelet.

A vampire site (Thank you Kerri Sparling for introducing me to the term!)  The needle goes in and she yelps.  Blood oozes.  The famous vampire site that has hit a capillary and is now sending blood dripping down her leg.  I pull it and apply pressure.  And, of course we need to do another.  She starts to get upset.

"You Can Do This," I tell her.  Let's not let this become a big deal.  Let's just get it done and move on with life and not let diabetes ruin the evening.  She calms down, the new site change is done, and we move on.

"A boy at school said to me Oh, I'm high...Oh, I'm stupid...Oh, I can't take a test" Jess tells me.  We have a 504 plan for the first time this year.  If Jess's blood sugar is significantly elevated she defers major exams until it is in the normal range.  It was the right thing to do.  Taking an exam with glucose laced brain cells is not fair, and doesn't allow her to reach her potential.  But, clearly other students have caught on to what is going on.  "That must have been upsetting," I say to her..."How did you handle it?"  Jess tells me she told him that she felt that was bullying and that he should stop.  I am so proud of her..."Jessica!" I proclaim..."Wow...you handled that so well.....You Can Do This!"  She beams with pride.

I wake at 5:30 am to prepare for the day.  We find it is easier to manage Jess's numbers, and to ensure her school days are better if we pack her lunch every day.  We spent hours researching the grams of carbs in the school lunches, but changes are made without notice, serving sizes vary, and to be honest, in a world where french fries count as a vegetable, I am happier just to have her pack.  I hate packing her lunch.  Measuring every blueberry on the food scale.  Trying to balance a small treat with other food that has a low glycemic index so she doesn't spike too quickly.  Making sure I put her post it note with the number of grams her lunch is in her bag.  Checking her supply bag for lows, strips, a new tissue.  It is a lot of work, and some days I'd love to just throw in a lunchable and call it lunch.  I choose not to (this might work for some families) as I have seen in Jessica and Sean the difference high glycemic vs low glycemic foods make in their blood sugars.  Some days I would give anything for a break.

"I Can Do This," I tell myself.

Blood sugars of 85 right when I had planned to go to sleep.  Knowing that this means at least one more night check.  Days with repeated unexplained episodes of hypoglycemia and knowing I'll be up during the night checking.  Complete exhaustion.  This is the life of every Type 1 parent I know.

"I Can Do This," I tell myself.

The hubby comes home from inpatient.  "I admitted a patient in DKA last night," he tells me.  Diagnosed at 12...now in her 30s.  She just decided not to take insulin.  I can see he is upset.  And, I am too.  How do we not worry this will be Jessica?  People telling us "that will never happen to her...she is too smart," doesn't help.  How can we possibly know how she will feel after living with this for 23 years by the time she is 30?  I can not even begin to imagine how sick and tired she will be of it all.  My heart breaks when I imagine the impact it will have on her in middle school, high school, college, and beyond.  Site changes every three days for years and years.  Multiple blood sugar checks a day indefinitely.  Measuring every single stinkin morsel of food...or feeling guilty about it.  The co-morbidity between diabetes and depression is huge.  I hope we are giving her the tools she needs.  I hope she sees that we are a team and always will be.  My husband has told me how alone he has felt living with Type 1, how hard it was that when he was diagnosed he was old enough for it to be his disease alone, and what a lonely world that was.  We have told Jess we will be there if she reaches a point where she can't do it another day and needs a break...no matter how old she is.  We are Team Jessica.

"We Can Do This."  My whole family can do this.  In part, because quite frankly, we really don't have a choice.  But, we CAN choose how we will do this.  And, so far I am pretty darn proud of the way we are choosing to live.  There is no doubt that this hated Type 1 impacts almost every hour of our life.  But, we control it.  We don't let it stop us.  It may get each of us down at different times, but there is always a member of Team Jessica willing to pick that member back up.  And, we are so incredibly blessed to have a big Team Jessica.  Our friends and family who "get it."  For every child that says something mean or rude to Jess, there are so many more who support her.  For every grown up that says something insensitive, or fails to recognize how much work this is, and the impact it has on our lives, there are those that fill us with kindness and compassion.  Our close friends, and members of the Type 1 diabetes community that we have yet to get to know well...they sustain us.  And, we are showing Jess that she is not alone...it does take a village.  And, most importantly I hope she sees that there is no doubt that she "CAN DO THIS!"

The Race

I'm running my first race tomorrow.  It is just a 5K, but next is half of a half marathon (a little more than a 10K) and after that...well...who knows.

I started out doing it for Jessica.  In my profession I get to see a lot of healthy and not so healthy people.  If you take bad luck out of the picture, so much of what I see has to do with how people eat and whether or not they choose to exercise.

Like all T1 parents, I will do anything in my power to help Jessica live a long and healthy life.

So, I decided to set an example and when I turned 40 I bought a new pair of running shoes and hit the trails.  I wanted her to see that I felt it was important.  And, I have tried to bring her along too.  We have run together some, and she seems to enjoy it.  She eagerly entered the race with me tomorrow.  But, then at soccer this week she told me she actually really doesn't want to miss her soccer game to run the race.  And, of course I won't force her.

I almost cancelled entirely.  And, then I realized that somewhere along the road of trying to be a good example for Jess, I have fallen in love with running.

It is the only time I get totally to myself.  Well, of course I bring the dog...after all if I weren't multi-tasking by running the dog, then I'd be taking time completely to myself and then the mommy guilt would kick in!

I run through the woods, listening to the stream and the birds, and my steady breathing.  I feel alive, healthy, and at peace.  It has been amazing to test my old 40 year old s/p twin pregnancy body and see what it can do.  And, it has amazed me.

And, I've realized that just as I so often tell my patients that they as caretakers need to take care of themselves, this is what running has become to me.  A reminder that amongst all the focus on my daughter and husband's health, my health is important too and should not be neglected.

It feels odd to be going to a race tomorrow that is not a Race for A Cure or a JDRF walk.  But, it also feels guiltily wonderful to be running tomorrow to support another valuable cause.  For almost three years I have lived and breathed diabetes every waking and sleeping moment.  And, I will continue to do so and continue to support and help my husband and daughter any possible way I can.  I will continue to live in awe of all they must do and wish with all my heart that they didn't have to.

But tomorrow morning for a brief time it will be my time.

I don't know how I'll do tomorrow.  As luck would have it I'm on call tonight.  And, there's the stupid cold I have had all week.  

But, if my daughter can be the leading scorer on her soccer team with a blood sugar in the 300's then surely I can do this one small thing.

Small Victories

First Halloween with T1- even broken pancreases can't stop the Halloween fun of carving pumpkins with Grandpa!

"Halloween is my FAVORITE holiday," her sleepy voice tells me as I tuck her in tonight.  "I just can't wait...I love Halloween!"  I smile with complete joy.  Just a little under three years ago I was filled with dread while also trying to deal with all the emotions that surround a new Type 1 diagnosis.  There is no good month to be diagnosed with Type 1, but especially for a small child October seemed particularly cruel.  Jess had already picked out her costume.  She was dreaming of candy, and ready for Halloween.

And, then her pancreas went on strike.  And, I was left wondering...how do I deal with a holiday whose main focus is candy? Maybe if we had started Jess's diabetes healthcare with the team we have now I would have felt more supported.  Her current healthcare provider would have insisted she eat the candy like the other kids, rather than instead giving us information on a program at a local department store where you can turn in all your candy for a small gift card.  I am by no means disregarding this program, but what small child wants to take her bag of candy and surrender it for a gift card that doesn't even buy one real toy?  I remember thinking "how am I going to pull this off?"

Panic breads creativity.

And, the Halloween Fairy appeared.  Both Jessica and Courtney saved five pieces of candy and then decorated a bag to leave the rest of the candy for the Halloween Fairy.  In the middle of the night while they slept soundly, the Halloween Fairy appeared leaving her magical pathway of glitter as she traveled across their bedroom.  Taking the bags of candy, she left behind presents decorated in black and orange paper and lots of Halloween stickers.

I woke to the kids screaming with glee.  "Mom---you were right---there is a Halloween Fairy!"  They loved the glitter all over their floor and were thrilled by the presents.

Of course there were questions.  Where had this fairy been before?  Well, the Halloween Fairy only visits Type 1 children and their siblings, I explained.  

Suddenly, having Type 1 diabetes was a pretty special thing.

The Greatest Fear

Jess and I have been working so hard on her diabetes these past few weeks.  It is an immense amount of work but she has rarely been over 200.  I have been thrilled...she has felt good...and I have just been hoping we can continue it so that her next Hemoglobin A1c kicks butt.

And, then tonight I checked Facebook.  A seven year old died in bed of hypoglycemia.

The "Dead in Bed" syndrome that every Type 1 parent I know fears.

This is the down side of good control.

What are we as parents to do?

If we don't aim for strict control we deliver our children to adulthood with years of the devastating effects of hyperglycemia.  Jess was diagnosed at seven.  By the time she is eighteen she will have had Type 1 long enough to have retinopathy and other complications starting.  She is too young to understand this in detail, and too young to fully manage her disease.

But, by working hard towards strict control, the risk increases that she will have a fatal low.

I don't know fear greater than putting a child to bed and praying they will be alive in the morning.  No matter how positive I remain it is always there.  Those first steps past her bedroom in the morning when I pause at the door to look for the rise and fall of her chest.

My heart absolutely aches for this family.

We need better technology.  The FDA must stop the slow approval of life saving devices.  We need the artificial pancreas with its auto shut off functions when a low blood sugar is detected.  We have been waiting on technology here in the United States that Europe has had for months.  It is inexcusable.

Back To School Jitters

Sending a child back to school with diabetes is no easy feat.  I remember hearing a story of a T1 child that went to school and the preparation was a bag of candy that was given to the teacher with the instructions "If he acts funny, give him some of this."  I sincerely hope that story is nothing but a story, and my heart breaks for that child every time that I hear it.

I have prepared to the best of my ability.  The nurse has all of Jess's supplies.  The teachers have their "crash course" sheet on Type 1 diabetes, and their forms I made for the unexpected substitute, the letter for the parents in Jessica's class that will largely be ignored (kindly asking them to let us know before unexpected treats are brought in...).  I reviewed all of the laws regarding a 504 from the Office of Civil Rights, and had a meeting with the principal, counselor, teachers, nurse, and district psychologist that went better than I could have dreamed.  Plans are underway for the 504 that will protect Jessica's safety, and allow her to reach the potential she would have had if her pancreas had not gone on strike.

Jess and I have spent the past two weeks meticulously managing her diabetes.  She has been a trooper brainstorming with me ways to get her numbers in line before the start of school.  We have kicked butt and I have wished her Hemoglobin A1c could be based on two weeks and done tomorrow.

And, the big day is tomorrow.

So, of course all hell breaks loose.

She wakes today with a blood sugar of 64.  Just when I thought I had nailed her overnight basals.   She levels out before breakfast only to rise to 302, followed by 397 after a correction.  Just as I am about to pull the site, she plummets to 81.  She then has repeated lows, alternating with highs.  All of this with her barely eating a thing.

"I'm not hungry" she tells me.  "My stomach is a wreck."  We spend a long time talking.  Of course, she is scared to return to school.  The lone T1 in a sea of working pancreases.  Not to mention the normal start of school jitters every child is prone to.

I don't know if that is why her numbers have been a mess today, but I do know it hasn't helped.  "What if my numbers do this tomorrow?"  I reassure her we will work through it just like we always do, and she won't be alone.

I know she'll be fine.  She is so brave.  I struggle with stage fright and public speaking, yet watch her practice her power point that she will give to her class to explain what diabetes is.  I know she will weather this transition from summer to school once again, and emerge stronger than before.

The transition is hard for me too.  She has been safe this summer---watched closely by myself or her wonderful babysitter with Type 1.  She attended CWD where she spent the week in a cocoon surrounded by other Type 1's.  It is hard to watch her return to the "real" world where she is alone and I can not protect her.

Yet, I know this is her life story.  It will form her and make her into the adult that I am beginning to see glimpses of.  These back to school jitters will be just one of many obstacles she will have to encounter.  And, she will.  Broken pancreas and all.

Site Change Phobia

Jess and I have been working hard on site changes.

I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes.  I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child."  And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child.  I know he is right.  I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her.  I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl.  And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.

He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue.  This really made me think, and was a life changing lecture.

In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot.  We had fallen into the same pattern with site changes.  She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building.  The hubby and I have approached this different ways.  I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning.  The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more.  Neither of us knew what to do or how best to truly handle her anxiety surrounding them.

It took talking to other families living with Type 1 and this lecture to help me understand why.  As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby.  As many times as I and others have told him it is not his fault she has Type 1, the guilt remains.  It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains.  And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.

As luck would have it Jess had a site failure shortly after I heard this lecture.  The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon.  Much to her protests, I told her we were doing the site change in the bathroom.  She panicked and was not happy, but we did it in less than 5 minutes!  Victory!

When we returned home I took over site change duty.  I hate it.  But, I know the hubby hates it more.  We did well...accomplishing all of them in 5 minutes or less.  And, a HUGE moment.  Jess did the first one completely on her own.

But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again.  The drawn out site changes began again, and she stopped doing them on her own.  She had two in a row that hurt and her anxiety escalated.  Once again the anticipation and anxiety became the worst part.  She once again became her own worst enemy.

It is frustrating and heart wrenching to watch.

I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all.  I told her we are making a game out of site changes and doing them in a different room every night.  Tonight we did a site change in the garage.  My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine.  I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.)  I basically yelled at her to "Push the button, push it now!"  I hated myself, but she did it and it worked.  And, it didn't hurt.  Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?"  It is like she needs to hear this to force herself to do it.  But, we are making progress.  She has done the last two in new areas of the house and pain free.  And, in under 5 minutes.

This is such a balancing act.  On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly.  On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.

My heart so bleeds for her.  I can't imagine how she will do this the rest of her life.  I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.)  It has been an effort to come home every night and review all of her numbers and make changes.  I am determined to see better blood sugar control as we enter this new school year.  I mentally groan when I realize it is a site change night.  I am so incredibly sick of it all.  There is never, ever a break.  Every vacation, every second it is there.  I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days."  It has been almost three years, and enough is enough.  I just want it to go away.  And, the guilt just fills me.  How dare I feel this way?  If it is this exhausting for me, how must my husband feel after 23 years?  How will Jessica feel as the years march on?  I freaking hate this disease.

But, I will keep working.  I am determined to help her conquer this site change phobia.  I couldn't protect her from getting this, but I will give her the tools she needs to fight it.  And, I will stand and fight it with her.

Hurdles

A rarity-two posts in one day.  But, I don't want to forget tonight.

It was an ordinary night.  I was making dinner.  The hubby was still at work.  Jess left to go upstairs and I didn't even notice.

"Can you come here mom?"  I hear from upstairs.

And, there she is.  She has the site change all set up and she is holding it on herself about to press the button.  She has done this but once before, and it was very directed by myself.  Her fingers technically pushed the button, but they were under mine and there was a lot of coaxing.

"I'm so disappointed- I wanted to come downstairs and tell you I did my own site change."  "But, then I  decided I wanted you here for this.  I'm so scared mom- I'm shaking."  And, she is.  Her whole body is trembling, especially her little hands.

"I can do this," she says.  "I'm wearing my bracelet."  She is wearing an "I Can Do This" bracelet from the Friends For Life conference (The "I Can Do This" project is amazing-check it out!)  "YES, you can," I reiterate.

And, she does.  The site goes in.  I truly don't think I have ever seen her so proud.  She jumps up and down screaming, hugging me tight.  She calls daddy at work.  She runs downstairs and she and Courtney do "the happy dance."  I am so incredibly proud of her.  And, more so - I am so incredibly happy FOR her.  What a huge hurdle.  What a huge step towards independence.

And, for one split second I feel a bit of pain.  I have done so many site changes for her.  I have loved being able to take this one part of the burden away from her just a bit.  Have I done my last site change?

The thought passes as quickly as it came.  Happiness floods me.

And, my sweet little girl says "Mom, if I'm tired or just don't want to do one---will you still do a site change for me?"  "Sweetie- even if you are thirty years old and you call to tell me you're tired and sick of it and you just need a break-I'll be there."  And we share the sweetest hug.

I'd like to think this has been a life changing summer for Jessica.  We found the Children With Diabetes support network and so many amazing, amazing people.  She knows we have already registered for next year.

We have had a wonderful babysitter who happens to be a college student with Type 1 with us.  I can only imagine the comfort this has brought Jess.

I hope these memories and experiences are enough to help her through this year.  She'll be the only Type 1 kid at her school this year.  The only other Type 1 having gone on to middle school.  I know it is lonely.  And, it is no fun to be different.  But, she is also but a phone call or email away from so many who support her now---so many who know just what it is like.

We have her diabetes appointment Monday.  As usual I fear the "mommy report card."  But, I am also glad it is still mine to feel guilty about.  I dread the time when she takes ownership and feels the guilt and frustration that my husband and all other Type 1 friends I have talked to feel when their HgbA1c is not up to par.  I try to remind myself that we have accomplished so much this summer.  Even if her number is not at goal, it can not take away from the hurdles we have jumped.