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.

A Free Ride

Today I let my 10 year old ride in the shopping cart basket during our shopping trip.  Yup.......I did.  We pulled into the parking lot and she had been complaining of not feeling well.  I checked her B.S. and it was high.  She was tired and sick.  I felt guilty for making her walk around the store for an hour like that so into the basket she happily went.  She laid her head back while we piled her over with boxes of cereal and toilet paper.  You know what?  Sometimes you just have to forget about what other people might think......because chances are, they are not thinking anything at all.  Her sisters had a good time pushing her and giving her a ride too.

The Ultimate Challenge

 I totally admit that we eat at buffets.  It is a place where all three picky kiddos can be satisfied.  Load 'em up, roll them out.  We never gave much thought to going to a buffet until the other night when Sweets mentioned that she wanted to go, but thought that it was probably an impossibility considering the amount of food one can consume at an alarming rate in those places and the fact that most people just go load up their plates giving no thought to what they are actually eating before they pile it on.

Challenge accepted.

We know what the Golden Corral has to offer and Sweets already knew what she would most likely get.  So with our handy Calorie King book and the amount of knowledge I now hold in my head, I felt pretty confident (ok I was dying, but Sweets couldn't know that) I could count the carbs in her meal successfully.  I told her she had to reign it in to about 45 carbs because she had been in a higher B.S. range than I appreciate all day.  

A piece of pizza, breaded shrimp, salad, and a small ice cream with a chocolate covered strawberry is what she chose as her menu.  I crossed my fingers, gave her some insulin in the parking lot, and we headed in for our fate.

Turns out I am a pretty darn good carb counter!!!  Two hours later and she had only risen 3 measly points!

There is a downfall for knowing how many carbs are in most foods you eat because, now your meals start looking like this.   I also know how many carbs that should be in a meal you eat and it's waaayyy lower than you think.  So the whole time I am eating at the buffet and then watching what other are consuming I was just about to lose it.  All I could think to myself was, what all this food must be doing to my poor pancreas.  Ha Ha.  Food isn't so appetizing anymore.

A Proud Moment To Cheer

We were sitting on the couch watching a cartoon and preparing to do a quick 2 hour check. I was having Sweets get everything out and all ready for me.  I turned my back for a second and when I turned around again she was holding her poker to her finger.  I said "you should just push the button Sweets.  I didn't cock it so you should just practice doing that.  Go a head, it's not cocked.  Just pretend".  Little did I know that she went ahead and cocked it when I had my head turned.  She looked me straight in the eye and pushed the button as I suggested.  I heard the snap and my eyes flew wide open.  She knew what she was about to do and I didn't!  Sweets gave me the surprise of my life and I hollered and jumped and hugged her!!  She cheered and was sooo happy.  

Sweets has been very afraid to go to school this upcoming year. She has been scared to death to prick herself and knew that it was something that she needed to be able to do in order to have a successful school year.  For some reason, today was the day.  The day to be brave........again:)

She has been taking her own levels for the rest of the day and seems quite proud to be able to take care of herself in this way.  So grown up.

A Special Milestone

The day after we got home from the hospital, I called our swim teacher and told her we'd have to change our lessons until the very last session in the Summer.  Sweets was not strong enough to participate in lessons (which were scheduled for the next week), and I was so frazzled that I couldn't even begin to figure out how to handle an activity like that.  To me, at that point and for a few weeks after, for some reason taking her swimming seemed like a really hard thing.  A scary thing to have her in the water with that much activity.  We have taken her a few times now, as a family, to the pool.  I know how to work the schedule and the amount of exercise to carbs she needs.

 Today was a special day.

It was a milestone we passed.  A marker of success.  I can't believe that it has arrived.

Sweets had her first swim lesson for this summer and she rocked.......I rocked.  It may seem like and insignificant thing to those who don't quite understand diabetes, but it is a balancing act.  Schedules had to be adjusted all day just to be able to get that blood sugar check right at the right time before her lessons.  Meals had to be prepared and eaten on time and sugar levels had to be in a safe range and maintained for her to exercise like that.  I am so proud of us.  Sweets and I.......a team.

We will be doing this for the next two weeks.  I am not a bit afraid anymore.

Bottles

I save things.  So when Sweets was done with a bottle of test strips, I kept the bottle on my dresser.  Yesterday I looked at the stack and it hit me.  6 empty bottles, that each once held 50 test strips, now sat there.  300 times.....  Those bottles represent 300 times Sweets has had her finger pricked.  She had plenty more in the hospital and is now just about done with another 50.  

In only 7 weeks, she has had her finger tips pricked over 375 times.  Can you imagine your fingers being poked that many times?

It is what it is.  In another 7 weeks it will be nearly 700 times......Then it will be 1000......Then it will be 2000 times. I think I will stop saving the bottles and just throw them away.  I don't need a record.
I can't wait for her to get a CGM.  A continuous glucose monitor would be heavenly.

A Picture Stroy about Type 1 Diabetes

This pink thing here is a pancreas.  It is located in your body across the back of your abdomen and behind your stomach.  Those black polka dots are islets or beta cells.  These beta cells create something called insulin.  When you eat, insulin tells your muscles to open up and receive the sugar or carbohydrates you ate and to use it for energy.

Sometimes someone is born with one or more HLA Complex genetic markers that will cause their immune system to see the beta cells as a foreign body and it will attack and kill them.  It's an auto immune disease.  Sometimes a virus will get in there and help the process along.  One can be tested to see if they have the genetic marker, still there is no telling at what time in their lives it will manifest itself.  

People who have Type 1 Diabetes have a dead pancreas.  It does not create insulin anymore.

Without the beta cells making insulin, telling the muscles to unlock for sugar, the sugar gets trapped in the blood stream.  The body does not receive any energy from the food that is eaten.  After a while, the brain thinks the body is starving and will start breaking down the fat and muscles for energy to stay alive.

As the muscles and fat are broken down, something called Ketones are produced and they also get trapped in the blood.  It's a poison and will make a person very sick.  Very high measurements of Ketones can make them throw up, dehydrate, and the body will hyperventilate to try and release toxins through the breath.  It is diagnosed as DKA or Diabetic Ketoacidosis.

This is when you get to go to the hospital because if you don't you will die.  This is where you learn you have Type 1 Diabetes if you don't already know.  This is where you get better.

Because the pancreas isn't working, insulin is delivered to the body via needle and syringe.  It is given 4 times a day.  A long lasting insulin once in the morning or night, and then a short acting insulin before each meal.  The blood sugar levels are checked at least 4-7 times a day to make sure everything is going o.k.

Now, all that sugar can go into the muscles and brain like it's suppose too.  The body can grow and develop like it should.

So this is what happened to Sweets.  She is o.k. now, but her pancreas will never make insulin again. She will always have to have it given to her through a needle or a pump for the rest of her life or until research offers something better or a cure.  She is happy though.  Which is a wonderful thing.

The Darkest Hour

It was a dark hour for Sweets.  Maybe the darkest she's had since her hospital stay.  No, she wasn't on the floor in a coma.  No, she wasn't sick from being too high. No, she wasn't in pain(physical pain anyway).  She was forced to be left out.  All of the family (family reunion) were headed to the park for a game of softball and fun.  She was so excited to play with her cousins.  Of course, we were behind because we had to do a check really quick to make sure she'd be o.k. there while I ran to the grocery store 10 minutes away.  She was left behind with the assurance I would drop her off in a second.
Her B.S. came back at 54.  She was over 200 ( too much juice) just an hour ago.  What the heck?  I had to go to the store for food for the next morning. There was no way I could stay with her at the park and I could not safely leave her there, even if I did get her levels back up.  There would be no one there to tend to her if she needed.  So, with a very tearful child, we left the fun behind and drove to the store.  I did pack up her sisters as well though, so she wouldn't be totally alone and promised a wonderful treat while we were out.  Still, nothing can bandage the sting, the hurt, the anger, the disappointment, and the sadness of something like that.  Diabetes..........has no mercy.

I put my sunglasses on and quietly cried with her all the way to the store.  Her littlest sister, in the best way possible, said "Mama, when Sweets get all better, she get no more pokes".  Sweets said "no Baby, I will not get better, I will have pokes until the day I die".  I began crying even harder.  The real killer was when Sweets then began to explain that she feels like a butterfly.  Before she had diabetes she was flying high, however she wanted, and now, she feels like someone put her in a jar with the lid shut tight to cage her in.  It was all I could do to pull it together before we pulled into the parking lot.
Yes.......I dare say......a very dark hour.

In the Background of the Celebration

We (my husband and I) were in the far shadows, in the background, behind the pancake breakfast, down the bench with snacks during the program, further back watching her gather a sack full of candy from the parade, on the sidelines of the water fight (that went on for hours) with a juice box or two, by ourselves quietly and frustratingly counting carbs for the picnic dinner, sitting on the ground with a watchful eye during rambunctious play during the firework show, measuring homemade ice cream with a 1/2 cup after everyone had their turn, and then I was sneaking through the dark of the night to treat the delayed low that was inevitable.

Sweets had a "normal" Fourth of July.  We tried our best to let her be on this day.  To let her eat what she wanted and to let her play as hard as she could.  It wasn't easy, but it was possible and it all worked out.  Sometimes I wondered if I was even enjoying my Holiday while trying to give Sweets hers.  I was secretly jealous of all the other parents, who were chatting away, having no sense of time, loading up their kid's plates with how much of whatever, letting their children run without a care in this world.  No worries at all.  Even though I may not have enjoyed my Holiday as much as others, I bet it meant more to me.  I gave my child something she wouldn't have been able to do on her own and that sacrifice is one I would do over and over again.  One that I will have to do over and over again.  And I am glad too!

P.S.  As I watched Sweet's gather up candy like the rest of the kids, I was wondering if she was even thinking that there was no way she was going to be able to eat it.  I mean a piece here or there with a meal or when she's low.  It would take 3 months to go through it.  Still she had a good time scrambling for it though.  I was worried about how I was going to deal with a big sack of candy in the cupboard temping her.  I thought maybe she could trade it in with me for something else.  I got a big break though!  She had also picked up an Otter Pop that was thrown.  It had a hole in it and leaked all over her candy and ruined it. I threw it away immediately and without her knowing. You know what?  She didn't even ask about the bag of candy.  I think she knew in her mind all along that it wasn't going to be feasible and had already let it go before I threw it away.

Trust And Help

I never ask anyone for help. I think if I need help then I am not strong.  I am stubborn.  Also, I don't trust people to a certain degree.  I have one babysitter I trust enough to take the kids for a couple of hours once in a while.  They don't spend the night places, I don't like them driving in other people's cars if I am not there, I don't trust men around my kids, I don't let them run around the neighborhood, I check on them all the time.  The list goes on.   I know I am insane (I don't need advice or lectures about it).........but, my kids are safe.  These two traits of un-trust and do-it yourselfness( I realize this is not a word) are not a good combination for a Mother who's child has just been diagnosed with Type 1 Diabetes.

First of all, my first bout with distrust in this diabetes thing was when our night nurse came in and immediately I was weary.  Anyone who has been in the hospital for a critical thing can tell you they have had a nurse or two who didn't seem as confident.  I was worried she couldn't take care of Sweets.

Second, I started to wonder if I could really trust the IV systems that were keeping her alive.  It's a box with wires and beeps and tubes and bags.  It could be faulty.  I had to trust in the Dr.'s, the equipment, the insulin, the needles, etc. etc.  Were they all going to do their job right?
Third, I really started to wonder if I could even trust myself.  The ONLY person(besides my Hubby) I really do trust!  Ha.....seems like an oxymoron.

I had to trust neighbors to take care of my children.  I had to trust that they would be fine without their Mom and Dad there.

When we got home I had to trust myself to be strong enough to do all this.  I had to trust Sweets to LET me do all this to her.

I had to rely on help from others.  My parents, neighbors, friends, nurses, doctors.  They all saw me cry.
I had to rely on my husband for strength more than I ever had.  He helped me more than anyone.
I had to accept help from people I never have met and will never see again.
I have to ask for help now.  I can't do this one alone, although my stubbornness makes me want to try.  I need emotional strength.  I need others.

I am learning to Trust.   I am learning to except that I need Help.   And that's all o.k.

Something Positive

 I realize there is not much happiness in this blog, but it's a blog about diabetes and there is not one good thing I have to say about that.  Nope, not one.
On the other hand, it is a trial our family and Sweets face.  A trial that lasts forever.  Everyone knows that good things come from trials (if you let them) so good things must be a comin' for the rest of our lives too right?
Anyway, there are a handful of positive things that have happened to us because of her diagnosis (not in any particular order).

1).  I have realized I am a lot stronger than I thought.  I always thought I was emotionally weak.  I always wear my feelings on my shoulder and have had a hard time controlling my emotions.  This forced me to learn to exert extreme patience and mental control in situations where it was necessary to put on a brave face and a smile for Sweets.

2).  Husband's and I's relationship has been brought to a new level of support, understanding, and love. After 15 years of marriage, I cannot express how thankful I am for him and for the new respect and admiration I have for him.
3).  I got to feel the love and support from neighbors and friends at the exact time in my life that I thought there was none.  I was going through a rough year wondering if our Church members really cared for each other.  I was thankful to have my Faith regained in them.
4).  We have met some amazing people who are completely dedicated to their work and people.  In a world where it seems everyone is for themselves, it is refreshing to see people serve others just because they love to help.
5).  It has been brought to our attention that our family needs to spend more time away from our individual pleasures while we are in the same house and use that time to interact with each other.
6).  I have a deeper respect for all those who are suffering from health related issues.  I realize that people are walking around looking "normal" like I do, but inside their lives it is tumultuous.  I need not to judge others.
7).  The small simple things please me to no end.  For example, an evening drive through the country to smell the fresh cut alfalfa, see  the wild birds, feel the cool air, and sing songs on the way with the children has been one of my favorite things to do this summer.
8).  My eyes have been better opened to my children.  I am more aware of their feelings, thoughts, and actions.  I am more concerned about their happiness and their progress in life.  I am more dedicated to their health and their future.  It's easy as a Mother to get in a lazy groove at home with the children.  We seemed happy and functioning enough.  I hadn't realized that I was slacking in certain areas.
9).  I have felt the great love and concern of my siblings.  At a time when were are all busy with our families and not near each other much, it has brought me great comfort to see them rally around and support our family.  I have realized, we are a strong extended family.  Not one brother or sister has failed to call or text multiple times wondering how we are doing.
10).  I have a deeper respect for my oldest daughter Sweets.  She has been an interesting personality in our home to work with. It's been hard for me to get along with it.  My eyes have been opened to the kind of Spirit she has and it's amazing.  She is strong, courageous, full of life, and never lets things get in her way.  She has never complained, asked why, or cried.  She had not been depressed or upset or too worried.  She goes on with her life dancing and playing and being herself.  She bounces back for all sorts of sad things and always seems generally happy from day to day.
I know I can go on with my list, but these are the top ten.  Our family is extremely blessed each day.  We have each other and we are strong.  We have family, friends, and neighbors who love us.  We have the means necessary to care for our children and to provide the things in this life that they need to succed and be happy.  We have awesome doctors who allow us to reach out to them in thier personal lives if necessary.  Our insurance coverage with all of Sweets medical needs is awesome.  I can't imagine having medical bills hanging over our heads too.  We will and can make it with this.................

Time

In my mind I think it, but I never say it out loud to anyone. Not even my Husband. I mark the time quietly to myself.  It's been one week.  Now we've made it through two.  Look, three have gone by and Sweets is still living.  Today it's a month.  It's silly because why bother measuring something that's in infinite in time?  I am I going to say later "oh look, it's been a year, two, twenty, thirty.  Holy cow it's been 50 years"? It seems absurd to even think about the time.  Diabetes is here forever and it's never going away so there is no reason to mark the time.  It's not even a joyous event to remember.  Like a birth or something.  What are you suppose to tell people?  "Happy Diagnosis Day, Congrats, it's been 10 years and you are still here".
Then there's the thought........it's a killer......how much time does she really have?  You hear about Diabetes claiming the lives of children in their sleep.  It haunts me every day.  You can do everything in your power perfectly and the unexpected happens.  The thought can drive you mad making you set your alarm for 12:30 a.m., 2:00 a.m., and 4:00 a.m. just to shake her to make sure she can respond to you.
Then there's the all the time you spend looking like your doing o.k. on the outside (going throughout life and doing normal things), but on the inside, your brain is constantly in worry, or thinking, or planning, or whatever parents of Diabetic children think about 24/7.  No one can understand what it feels like to have to constantly be thinking of the next thing you have to do to make sure your daughter can live through the day.  You think you can plan one step a head of it, because really it's a game of strategy, but sometimes you lose because Diabetes cheats.  It's cheated Sweets out of life.
Speaking of time......it's time to start planning lunch and dinner and then our outing out tonight.  It all has to be meticulously planned to the hour.  You can't schedule a time to go test drive a car unless the rest of your day is perfectly planned because you don't want to get caught at the dealership when dinner should be served or when a low could be expected.
Yup, Diabetes runs the show and has stolen our time.  Time that shouldn't even be measured.

Our First Trip Away

Lantus....check.  Novalog....check.  Meter, strips, poker....check.  Alcohol....check.  Cotton balls....check.  Log book....check. Pink Panther book....check.  Carb King book....check.  Extra insulin....check.  Glucagon....check.  Glucose tabs....check.  Juice boxes....check.  Lantus....recheck.  Novalg....recheck.  15 carb snack packs....check.  Kitchen scale....check.  Traveling schedule....check.  Dr.'s phone numbers....check.  Check....check...check.
We were headed out of town.....just to Grandma and Grandpa's.  A safe first trip just a couple of hours away.  Still though,  I am full of anxiety and nerves.  Seems so silly, now that it's all over,  at how scared I was to leave my safe haven house where elements are controlled and are pretty much predictable.  I was worried about traveling alone without my Husband and taking care of all the kids and things by myself for days.  I planned our traveling hours aroung her meals and B.S. checks.  I planned Sweet's meals and snacks and brought a lot of our own food.  I did my best to plan for everything so that Sweets could have a good time and that I could not worry sooo much.

 Just being silly at the Zoo.
Which make this Mama happy to see.

Another feat under my belt.  Traveling, sleeping over several nights, planning for extra activity and exercise, carb counting for meals I didn't make, etc.  My parents were great supports, my sisters were there helping me along the way.  The cousins were there to whisk Sweets away from her diagnosis for a time and to help her forget all about it.  She played and ran and swam and was outside all day.  I ran half a juice box out to her every half an hour during her hardest play times and checked her at night for low's.  Her levels stayed adequate all weekend long!!!!  We went to the Movies and had treats too, we visited the zoo and the park and we ate lunch out to McDonald's.   I am sooo proud of myself!!

HbA1c And Hypoglycemia

I have a few new favorite kitchen gadgets.  Instead of serving spoons we now use a lot of measuring cups.  It's not unusual for me to go through as many as three different one's in one meal.  I have four sets of measuring cups and it's fun to have some bright colors.  The scale is a necessity for weighing everything from pasta to fruit to baked goods.  It's awesome for calculating the carbs perfectly in certain things.  I love that this set of measuring spoons comes with a 2 TBS.  I give Sweet's 2 TBS. of most condiments and it's made it easier to dish it out this way.  A calculator is sitting right in the middle of my counter at all times now.   I am getting quite handy at dividing fractions and figuring portions per servings.  The plastic cups are re purposed applesauce containers.  I just wash them and throw them in the drawer.  They are perfect for small portions of fruit and snacks and condiments.  They weigh next to nothing and are easy to set on the scale. I use them at almost every meal.

There is something called an HbA1c test that they do every three months.  The blood test can tell the average Blood Sugar level that Sweets has been at for all that time.  The numbers on the scale are broken down like this.  The higher levels Sweets are at for a higher period of time indicate possible future problems with her eyes, kidneys, feet, etc.  As a parent, I want to try to regulate her Blood Sugar levels as tightly as possible to ensure that she is almost always in this green area.  This way, she can live happier as an adult with less problems.

This is why I try to count the carbs exactly, match the units of insulin exactly, get her exercising to bring those numbers down and test her often to make sure her Blood Sugar levels are within a proper range.  I feel as a parent it's my job to do this for her now and to teach her how to do this for herself as she grows.  It is a gift I am giving her now, so she can be healthy as an adult.

Another reason I try to manage her Blood Sugar levels so closely is that it is really easy for her to have the opposite of Hyperglycemia (high blood sugar).  Hypoglycemia scares me more than high levels.  It seems that she can get low enough to really have problems in a short period of time.  Within hours actually.  If it's not promptly caught and taken care of, she can become unconscious.  She is becoming better and being aware of the symptoms of low blood sugar and how they affect her body so it's easier to catch and faster too.

Every day we are learning more and becoming more confident in managing her levels with our own knowledge.  We have not been having to contact her physicians daily like we used to because the picture puzzle is clear enough.  This gives us a great amount of satisfaction and control.