Sarah's Story

Dear Friends and Family,
I can't believe it is already June 2.  This day has been looming over my head and creeping up.  It is not a day that I choose to remember, but here it is and I can't believe it, but so are we.   This has been an amazing year for our family and for Sarah.  Our lives have been turned upside down and inside out and we've landed on our feet.  We've settled into our new "normal" and even though life is still very hard, it is still very good!  Sarah is the most amazing girl.  I can't believe how well she has adapted into her new life and with such spirit and happiness.  She is courageous and so strong.
I've put together a video about her diabetes and her new life.  Please take the time to watch it with an open heart and an open mind.  This is our life every day, every hour.
We are walking on August 22, 2015 in Idaho Falls to support Junior Diabetes research.  For Sarah, it's something we have to do.  We need to support her and all the other children who deal with this disease.  I invite you all to save the date and to come and support her in this walk.
Please let me know if you plan to join us and I will order a shirt for you and tell you how to join our team.  Thank you for all your support.  We love you all.

A Good Experience

2 weeks ago at a very small and informal Diabetes conference at the college, we got to listen to a totally inspiring story of Miss Idaho's diabetes diagnosis and the reasons why she chose to pursue Miss Idaho and Miss America.  It brought tears to my eyes as Sarah sat there and listened to words of advice about not trying to be what your peers want, but to figure out who you are and be the best you can.  She learned about using your disability to make something awesome out of your life.  Until now, Sarah has been so admit about not having a pump, tonight was the first time she's actually considered it.  Through Sierra, she saw that a pump does not hinder your beauty or make you weird. 

Carb Counting Mama

I just counted my 915th meal (that doesn't count the many, many desserts and snacks in between).  It would turn you into a carb zombie too! I am a pro.  

Before and After

I think in the rest of the family's sees Sweet's one years diabetes mark would be June 2nd because that's the day she was diagnosed.  It goes back earlier for me though, because it was in March that I started to notice a difference.  I cannot blame myself for not knowing something was wrong at that time.  It was a very slow progression and as everyone knows, small changes over a long period of time go unnoticed.  She was just extremely thin.  I can, now, compare pictures of her and see how sick she looked.

I had to go and delete all the pictures of her from March to June of 2014 because they make me soooo extremely sad.  My baby was very sick and we didn't know, but the pictures tell a different story.

This picture of her with the flower in her hair was the only one I allowed myself to keep and I can barely look at it without breaking down.  I remember this day so well.  It was nothing special, just a first spring walk along the canyon rim. 

So as I reflect upon the last few weeks of March, my heart is filled with feelings I cannot explain.  I won't try because, quite frankly, unless your a T1D parent yourself, there is no way to understand no matter how willing or how hard you try.

                                April 2014                                                             March 2015

These girls are two very different girls.  Sweets would say, the one before diabetes and the one after diagnosis.  She has changed and she knows she's not the same girl.  Anyone would say in shock "of course she is.  Just because she has diabetes doesn't make her different. How can you say that"?

Well, in retrospect, her personality hasn't changed.  Sweet's hopes and dreams, likes and dislikes, sassy attitude and all are all the same as before,  but she is physically changed and her life is changed.  A part of her (her pancreas) has died and that has changed her forever.

Sweets is a special girl full of extreme energy, drama, emotion, and fortitude.  There is nothing halfway about this kid and anyone who has lived around someone who is that dramatic about anything and every detail in life, knows that it can be an exciting roller coaster ride full of ups and downs. 

I can't go so far as to say that she has embraced her disease, but I am surly surprised at how well she has taken it and at how much she has learned over the past 10 months.  There is nothing, and I mean nothing, that she hasn't done, that she's wanted to, because of diabetes.   She has not self -pitied or cried or complained about life.  She is not depressed or sad.  She wishes she didn't have it, but who wouldn't.  She understands that she needs to keep herself healthy and will make good choices in what she does and doesn't eat to keep her levels steady.
I wish I could write post after post of awesome things that we've learned, or people that we've come to know, or how diabetes has impacted our lives for the good, but actually.............(and I am not trying to be negative) there really isn't.
All I can write about is our experiences and what is going on.
So here it is.......March......a year from when I first noticed something different about Sweets......and it's been a rough week emotionally.
I am just so thankful that she survived.....that our family is still in tact after this crazy year......and that she's happy.

T1D fears and night checks

Last night we had to try and try to tell Sarah that she was ok to go to sleep.  I felt so sad to think that my daughter was just laying in bed trying not to fall asleep because she was afraid she was going to die that night.  She has to put her complete trust in us and the only reason she allowed herself to sleep is because of that.   I can't imagine being just 11 years old and having to live with that fear.  It makes me want to punch something.

There is a possibility that an unknown

  low blood sugar could make someone with Type 1 Diabetes slip into a coma and die in their sleep, but there are also precautions to take to make sure this doesn't happen and it is rare that someone is neglectful enough to let it.  Still, the possibility is scary enough that I do check her BG in the middle of every night.  Not every T1D parent does, I don't necessarily need to either because she is never low because we know how to prevent it.  Still, the nagging possibility propels me to her room in the middle of each night.

A snippet of the last few moths......a snippet

-Measured our pizza with a ruler on Friday and measured waffles on Saturday.  Weighed rolls on Sunday, weighed a banana Sunday night, weighed a potato on Tuesday.  Counted out blueberries on Wednesday morning, counted out pretzels Wednesday for snack, measured out popcorn with a cup on Wednesday night.  So goes the meal prep, every day, every meal.

-The other day I was driving by myself in the car and was extremely hungry.  I had not taken the time to eat breakfast.  I looked over and saw the bag of Pepperidge Farm cookies sitting in the passenger seat.  I immediately scarfed down three.  Then I almost threw up and started to cry as I realized what I had just done.  Just the other night Sweets was asking for one and I had to tell her no because there were too many carbs in one to eat without taking insulin and it wasn't a good time for me to be giving her any more insulin that day.  I had just eatin' three of them.  I took advantage of the fact that my pancreas worked, and without me thinking of it, ate three of something my daughter had begged and begged for.  I felt, and still, feel awful.  I didn't need three cookies, they weren't good for me anyway, and here I sat stuffing my face with them.  I felt so guilty for taking advantage of something my daughter fights for every day.

-Sweets got sick the day after Christmas and it seems like, whenever she gets sick enough to be down for the day with a fever, it messes up her levels.  Not for just the day, but for good. We were also out of town.  I waited it out for a week and they never went back to how they were with the ratio's and doses she was on.  I tried to move her carb ratio up, but that did not work.  So I checked her Ketons each day and finally called the endo because that's what I do when I consistently see levels in the 200's for every check.  What?  Endo's aren't suppose to go out of town for a week!!  Luckily she had a Ped's appointment in a couple of days.

-  Before our Ped's app. we went out of town again.  I have never had to check Sweet's Ketons so much as I have in this week.  Alas, I forgot her Keton strips and she measured over 300 when traveling to our destination.  We just about turned around and went home.  We did decide though, that diabetes was not going to rule our lives, so we stopped at a Walgreens and then at a Walmart to find Keton strips.  Who knew they were so popular?  Walgreens was out and I picked up the last box at Walmart.

-Sweet's numbers were creeping and creeping up week by week, so a call to the endo fixed that.  We have now split her Lantus into two seperate doses.  6 units in the morning and 6 units at night.  Amazing!!!  That fixed everything.

- Today Sweets mentioned to me that no one ever.....ever invites her over to play.  She told me she thinks it's because she has diabetes now and no one wants to bother with having her over.  I cried that day.

- Big day for Sweets.  She got her favorite Lofthouse cookie for a Valentine's Day treat in her classroom.  I never do this......but I gave her 3 units and let her eat it all.  See how happy she is?

-Ugh.....insurance is not covering her short term insulin (Novalog) anymore and they are making us switch to Humalog.  Our endo talked to a pharma rep and she got us a sample of a half unit dosing pen and a vile of Humalog to go with it.  Not many patients use the humapen that comes in half unit doses.  I am happy that we got a free pen and a sample.  It's a very pretty pen and comes with it's own leather hard bound case.  It looks a bit like something a pair of eye glasses would come in.  The pen is a pretty emerald green and sweets has decorated it with stickers.

- Steady numbers, averages looking good and are going down.  Sweets has an appointment with the lab this week on Thursday.  They are taking blood and checking her thyroid because she is not gaining weight (she only weighs 67 lbs) and there are other sypmtoms as well.  Also they are checking for Chron's Disease.  I have not told her she is going in for testing.  I am just sure she will be crying.......(I will be too on the inside, but confident for her on the outside).  Blood draws have always made me afraid.

Hide 'n' Seek

One of these things is not like the other, can you see it?  Kudos if you know what that is.  I have found them on the garage floor, in Sweet's bed, on the kitchen floor, under the car mats, on the window sill, under the rug, in the bottom of my purse, in between couch cussions, and on the kitchen counters. 

She goes through 5-8 of these a day and will test herself wherever she may be at that time.

Test Strips.......expensive little buggers!

A1C Score

Sweets had her first A1C test today since her diagnosis.   When she went into the hospital it was 14!!  Ouch.......

Today, I am proud to say, it was 6.8 

Whoop whoop.

It is has been by far the hardest thing I have ever done to keep Sweets blood sugar in range day in and day out.....hour after hour.  Sometimes I wonder why in the world I care so much, but after we get a score like this, and after only just a few month of learning how to care for her, I remember what it's all about.  Keeping her healthy so she won't go into ketoacidosis again or pass out from low blood sugar.  So later in life she won't go blind, have kidney failure, nerve damage, skin disorders, gastroparesis(just to name a few complications), and will be able to have children.

Plus it feels really good when the Endo pats you on the back and looks you in the eye and tells you "good job" because sometimes you don't hear it enough.

It's just a pizza party

or it used to be just a pizza party.  Now it's...........

She has a pizza party at 1:00 and I can't give her the normal lunch at noon with insulin and then turn around 45 minutes later and give her more insulin for pizza. It's dangerous to stack insulin.  So, I take baby sister to the sitters while I go pick up Sweets so she can hang with me for an hour at noon while the rest of her class is eating their lunch.  I know it's been very long since she has had breakfast and that she won't last an extra hour without eating or we risk low blood sugar.  I can't give her much though, or it will raise her blood sugar too much, so I choose to give her a couple sips of juice and some peanuts to hold her over.
We drive to the convenient store and get her a diet soda then head back to the school to wait for the bell to ring.  We find that the teacher is going to allow each student 1 piece of pizza.  That's usually no big deal, but this is Sweet's lunch and she's starving.  One piece of pizza isn't going to cut it.  So I head to the office where she has yogurt tubes in the fridge. I count the carbs for her pizza and yogurt while she checks her Blood Sugar (which happens to be in a very good range thank you very much).  We go to the restroom to take the insulin because Sweets still hasn't gotten over the fact that it's ok for someone to see her take her shots.  I leave her to have her pizza party without mom hanging around.
I drive back to the sitters and grab the little sister.  It's 1:15 by now and at 3 o clock (two hours after she eats) I have to go back to the school to check Sweet's BG to make sure she isn't dropping.
I told her Home Health nurse not to bother coming in for her today because the schedule was all messed up and consequently I got to nurse her today. No big deal...........it's just a pizza party
................(for a normal person).

How does Halloween work?

I read a little piece of advice in a magazine article on holidays with Type 1 while I was in the hospital with Sweets.  It advised, for Halloween, on making the other parts of the holiday such as: pumpkin carving, costume making, party games, and getting together with friends the focus and fun instead of the trick or treating.  We tried to help sweets have the costume she wanted, made a whole evening dedicated to carving pumpkins and roasting seeds(which are very high in protien and low in carbs), attended the church Halloween dinner and party, and her school grade tried to make the class Halloween party about movies and making slime instead of the treats.  Of course we let her go trick or treating.  How can you tell them they cannot.  But, then you get this whole big plastic pumpkin full of sugar crap.  Knowing all about carbs and sugars and what they do to your body makes you look at that much candy in a new light.  There is no way she even can have more than 1 piece of it a day. Some days it's not any.   1 small candy bar can mean a half unit more of insulin with her meal and if she's in a higher range already to begin with, well, that doesn't work for me.  I do my best to let her have some though and she is very understanding.  Good girl.

Candy makes the blood too sweet for this vampire girl.

I offered to buy it from her, we tired to convince her to give it away, etc.  She's hanging on to it though and I don't blame her.  As she said "I worked hard for all this candy"!

Diabetes Awareness Month

Just another month to make me feel like I should be doing more, but can't figure out how.  I am not campaigning, or wearing t-shirts around town every day.  I am not spreading the news to neighbors and friends because, frankly I don't have time to associate with anyone.  I do not have a huge Diabetes blog that I am spreading the word with or even a Face book account connected to hundreds of friends. 

My daughter has diabetes.  The End.  I figure it's enough that I keep her alive and not sick every hour of the day.

it IS true

I called the pharmacy today to renew Sweet's prescription of Lantis.  We had a pen of Levimur the endo gave us to try because Sweets had complained of the Lantis stinging.  Long story short, we did not have so much success with the Levimur. 

When I got to the counter I did not recognize this particular Pharmacist.  I did have to chuckle though, because she knew who I was and which prescription I needed without me even saying a word.

So it is true............

On the top of the World

Dear Sweets,

I hope that you can always feel that in this life, you are on top of the world.  Daddy encouraged you to try your hardest to find a way to climb to the top of this rock. You almost gave up.  We waited patiently for you to find your way.  It is something you really love to do......climb.  

You have not let your diabetes slow you down.  You never complain, cry, or ask why.  You go on with life, but in the quiet moments, sometimes I can see your pain.  You try your hardest to not let it slow you down.  You are so strong.....so much stronger than I.

I pray that throughout this life, you will continue to climb.  To see whatever you want in life and find a way to get to the top of it.  I pray you will never  let your disease define you or tell you what you can't do or who you should be.

You have so much spirit, fortitude, determination, and just the right amount of stubbornness. 

Your Daddy and I will be right behind you....encouraging you....helping you....cheering you on.

You are amazing Sweets.  Everyday you prove it again and again.

We love you to the ends of the Earth and back again.

Love, Mom

Unpacking and hiding the memories away

Some experiences are to be treasured, photographed, talked about around the dinner table, and remembered for years.  Others are pushed deep down inside, hidden away, and locked from the heart.
They are so emotionally awful that you go out of your way to not remember them.  But, sometimes, they creep up.  Like when you are trying to fall asleep and all you can play in your mind is that experience.  Then you end up crying yourself to sleep.  Other times they unexpectedly hit when you are cleaning and find related objects that slams your heart to pieces again.
Sweet's gifts and cards and things from the hospital stay over the summer were Godsends.  They uplifted her heart, gave her joy in that time of stress, and let her know how much everyone loves her.  They kept her busy for hours in that boring place. She cried at the love and caring others sent.
We packed them up with us in a big gift bag and brought them home.  We put them in her room, and there they sat, untouched.  Eventually the bag got moved to her walk in closet.  When she was bored, I told her to go get out some of the lovely gifts to play with.  She declined......every time.  Eventually I put two and two together.  She didn't want to look at the gifts because it reminded her of her most awful experience on this earth this far. Memories of the day and time that changed her life so dramatically forever.  Of the week she went into the hospital one person, and came out another.
One day I tried to clean out the closet, I looked at the bag, and the pit immediately formed in my stomach. I totally understood her then.  I didn't want to clean it out either.  I just shut the door and left.  We hardly ever go into the closet.  It's a huge mess, a room not used anymore.  I need to put the laundry back in there, it needs to be cleaned.  Which means, I have to do something with the bag of stuff.  I will have to go through it.  Today is the day for me to clean it, to remember. Of course I will cry.  I might break down.  I might hyperventilate.  But, I will lock the cards and gifts away from her.  Not to be seen, until the time when she can begin to heal from the emotional trauma.  When we can pull them out, and remember again, all the love our friends and neighbors and family gave us at that time instead of the awfulness.

p.s.~ on a strange discovery, the stuffed animals she recieved in the hospital, for some reason, do not provoke these feelings. They are all on her bed and slept with every night.  Also, the gifts she recieved from family and friends upon her return home are not catergorized in this either.
p.p.s.~ Again, thank you to all who sent cards, flowers, and gifts to cheer up our Sweets.  We love you.

Endocrinologist

Endocrinologist...... I love you

Diabetically Scheming Friends

Sweets told me something that happened at school the other day and I thought it was quite amusing.

She has another boy in her grade with diabetes and they often find themselves walking to lunch from the office together.  Sometimes they eat next to each other too.  

This particular day, I had put a chocolate in Sweet's lunch.  Matthew was sitting next to her and as any diabetic knows, a sweet treat is very nice to find.  I can just imagine the look on his face as Sweets pulled it out.

I don't know the exact conversation that went on from there, but it had to be something like this.

Matthew: "I love mint patties".

Sweets: " Here, I think I can break off this much without it messing up my carb count.  Do you want some"?

Matthew:  "Sure, thanks!!  I think that will be just the right amount that won't make my blood sugar go high.   Thanks for sharing Sweets". 

Sweets:  " I know how much you probably love to have candy.  Just like me.  And I know how you feel every day about diabetes.  I know what you go through."

Matthew:  "It sure is nice not to be alone anymore.  I am happy to see you in the office and at lunch every day.  You are so happy and friendly".

Sweets:  "It's nice to be able to diabetically scheme with you Matthew.  Don't tell our Mom's we share"!

D-Mom

How God Selects The Mother Of A Child With Diabetes

By: Erma Bombeck



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with Diabetes are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint Matthew."
"Forrest, Marjorie, daughter. Patron Saint Cecilia."
"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a child with Diabetes." The angel is curious. "Why this one, God? She's so happy."


"Exactly", smiles God. "Could I give a child with Diabetes to a mother who does not know laughter? That would be cruel."

"But has she the patience?" asks the angel.


"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But ,Lord, I don't think she even believes in you."


God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"


God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, this is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in mid air. 

God smiles. "A mirror will suffice."

D-Dad

D- doesn't just stand for diabetic.  This is the most awesome D-Dad you will ever find.  He is Deserving, Dutiful, Determined, Diligent, as well as Dashing.

I recently read a blog post written by a D-dad which was about his little girl's pink supply purse. He carried around everywhere for her.  It was mentioned that a more masculine bag could have been bought to put her things in since he would be the one to carry it most places, but  he let her pick a pink princess one out because he wanted her to be happy.

We went on a cave tour this past weekend and this Dad had his daughters purse strung over his shoulder the whole time too.  This picture is so symbolic.  We as parents, and especially this Dad, carry her burdens on our shoulders for her. We do not make her carry her diabetes on her own.  We throw her purse of worries and supplies on our backs for her until one day(as she grows and we teach), she will be big enough, strong enough, and emotionaly mautre enough to carry her "purse" on her own.

You know what?  He looks pretty good with a bag!

Back to School with T1D

I have been putting off writing this post.  The last 2.5 weeks have been so tiring and emotionally draining that I felt even the thought of pounding out a post on it might just tip the scales so far that I could be officially considered a wreck. These last two weeks have been the worst for me since I brought Sweets home from the hospital last June. I don't even know where to start.
Lets just say, the nonchalant manner in which the other T1D Mom's handle their children in Sweet's school, makes me look like a neurotic lunatic.  Granted, there are only two others, one boy who is Sweets age, and a girl just a grade younger.  She was diagnosed just a month before Sweets, he's had diabetes since he was three and has a pump.  Go figure.  But, it wasn't long before I realized that I was the only parent training staff members on diabetes, creating action plans and low blood sugar guides for all the classrooms she would be in, creating low blood sugar boxes for the office, her classroom, and other rooms she would be in, meeting with recess aids, talking to lunch ladies, planning ahead for fire drills and lock down, etc.  I was the only one coming into the school every day, checking my daughter, interfacing with the teacher, and consequently.......looking like a stalker.  Am I over reacting?  Maybe......  Am I overprotective ? ......Probably.  But, how can you leave your child at school unless you are 100% sure everyone can take care of her, that there is a plan and it will work, that she will make it through the day and not eventually pass out from low blood sugar, or be in trouble for laying her head down when she's high.  How can you make sure that she will get the correct insulin dose for lunch if she's normal, high, or even low for that matter?  How can you leave her there and go home and get anything done without worrying so much that you are in tears, or sick, or unable to stop yourself from texting the teacher or calling the office every hour?  You can't, unless you have taken every step available to make sure, sure, sure, that everything has been thought of, and all staff is on board.  And still, I worry.
See?  My blood pressure is rising as I write this.

Here is a copy of her Care Plan I worked out for her.

Here is a copy of her Low Blood Sugar Guide for the classrooms she is in

Here is a list of the items in her Low Blood Sugar Boxes
- 4 juice boxes
- 4 15 carb snack pouches
- Peanuts for protein
- Glucose Tabs
- Cake Gel
- Quick guide for Blood Sugar Monitoring
- Carb count book (office)
- Keton strips (office)
- Extra pen needles (office)
- 20 carb yogurts (office fridge)

I bought Sweets the cutest D-Bag (purse) she keeps in the classroom and carries with her everywhere except to recess. The items in her bag: meter, strips, alcohol pads, glucose tabs, Cake gel, Glucogon shot, juice box, 15 carb snack, extra batteries for meter, insulin, and extra pen needles to be with her everywhere.  Then, in the case of a lock down or fire drill or wherever she is, she has access to those things that will keep her alive.  The other D- kids keep their stuff exclusively in the office and that baffles me.  Why wouldn't they keep it with them in case they couldn't get to the office?


*She has reminder notes on her desk when to check and to help her remember to stop and think about how she's feeling.

*Myself or the Office manages her 10 'o' clock check where she gets a snack so her levels don't crash to a dangerous zone, again.

*The home health nurse comes in at lunch and 2 hours after for her insulin and checks.

*Her teacher texts with me her levels and she has a log for Sweets to fill out.

Still, every day is a battle as her diabetes makes us jump through hoops with unnatural high numbers in the early morning, to crashing lows in the later morning.  Then it laughs at us as we deal with low's before lunch and roller coaster numbers in the afternoon.  She has had to eat lunch alone on two occasions and has already missed a P.E. class.  I am constantly trying new things to hopefully figure it all out. I hope, one day, that I can come home, confident that Sweets will be fine at school and I don't have to sit here and worry all day.  It will take time, to realize that the staff can handle her, that she can take care of herself, and that the hurdles we have to get over will be behind us.  Until then, I will cry in the mornings, worry all afternoon, and cry again at night that we have to do this all over again the next day.

A Silent Cry

Did you know that as a T1D mom you learn to cry with your heart instead of with your eyes.  When things are very scary or frustrating or you feel you can't take one more second of it, you learn to smile with your mouth and cry with your heart.  It squeezes and hurts and you stop breathing for a moment.  Then it does it again and again until you can compose yourself enough to make it stop or are lucky enough to escape to a secluded place to be able to really cry with your eyes.  Someone might think I am describing a panic attack, but it's not, it's a learned behavior.  I do it on purpose.

I am around my children 24/7.  Most of the time I can't just leave to cry and I can't let Sweets see me upset.  I can't cry in the middle of the grocery isle, or when the Dr. is talking to me and Sweets , or during the middle of church, or in a meeting with the Principal, or when I can't mentally wrap my head around what is going on, or when Sweets is upset and needs me to be strong for her.  Crying on the outside is not an option.  So I cry on the inside.

It's amazing what the heart can go through and keep on beating.