Sunday, December 28, 2014

First Diaversary

I don't know whether to dance and sing and scream for joy or bury my head in my blankets and bawl uncontrollably.  It's been a year today.  This evening marks the day I heard the words "Your son has Type 1 diabetes and is in severe DKA and we need to move him to the PICU."   His breathing was so fast, like he'd been running a marathon and just finished.  His face was ashen and his lips had a blue tint to them.  He had dark circles under his eyes.  And his hands and feet were the coldest things I'd ever held.  He was lifeless.  I was so scared.  Today he is alive.  A year later and he survived.  In another country or 50 years ago or had I not taken him in when I did there would have been no hope.  I hold onto that hope with two hands and a whiteknuckled grip.  I don't want to think of what could have, what might have happened.  He's here.  I'm grateful.  I'm grateful for that ER doctor.  She was an angel.  It was our second trip to the ER.  My Mommy instincts were screaming at me that something wasn't right with the stomach bug diagnosis we had in the morning, in the first trip to the ER.  They missed it.  They misdiagnosed him and we almost lost him. 
First trip to the ER.  Stomach bug diagnosis.

This time of year has always been a time to reflect, to look back.  It's so difficult to do that today.  We've changed so much this year.  Now there is so much planning for meals and outings and just life in general.  It was so overwhelming at first. It's still overwhelming. It's like always having a newborn. The disease hasn't changed.  We have.   Type 1 is the only disease I can think of where you are given the basics and sent home to care for it essentially on your own.  Insulin can be a deadly weapon.  It can give life but it can kill too. But the other option is not even on the radar.  There is no other treatment.  No amount of diet change, exercise, or any other "cure" bandied about will change a diagnosis of Type 1, he'll always need a source of insulin since his body doesn't have it anymore.  Type 1 is autoimmune.  It is a disease where his own body attacks the cells in the pancreas that make insulin and kill them off.  It sucks, but with artificial insulin injected into his body 4 or more times a day he gets to live.  I'll take that.

We've made misstakes.  We've given too much insulin where he then needed to eat more carbs.  We've not given enough insulin and then had to correct highs later.  We've forgotten to take the kit in the car with us.  We've forgotten to pick up more insulin at the pharmacy in time for breakfast.  He has snuck treats without telling us or us noticing until he was having highs all day.  Misstakes happen.  Luckily these misstakes were caught and there weren't any immediately noticeable issues.  But with every high I worry about longterm effects to his body.  We try and avoid misstakes, but we are human. 

 Christmas was wonderful this year.  Quiet, uneventful. Sugar Bear's diagnosis and stay in the hospital colored last Christmas with a broad stroke.  It made it the last "normal" holiday.  I remember the boys eating their candy from their stockings before breakfast.  I remember the laughter and happiness.  I remember the ease.  I remember the normalcy.  I remember the freedom.


What a difference a year makes.


So I'll spend my day in reflection and gratitude.    We are stronger because of our year.  We are more prepared.  We are healthier.  We are more aware.  We might not have the same ease or freedom and there is pain involved, but we got the best gift in 2013 when we got to keep him. I'll take that.  I have my baby. 

Friday, December 19, 2014

The Sibling

We have an older son, a teenager.  He is 14 going on 30.  He was 13 when his brother was diagnosed.  He has always been a fairly responsible, cautious kid.  He's kind and clever.  When Sugar Bear spent that Friday into Saturday throwing up our oldest was a big help.  When Sugar Bear was non-responsive and breathing like he'd run a marathon it was the teenager who helped me quickly get a few things together as I carried his brother out to the car.  While I was in the ER right after being told it was Type 1 and calling my husband it was my older son who was the comfort. He's had a lot to take in in his short 14 years.  A lot of medical issues and stress for a young man.  His Dad is disabled so a lot of responsibility falls to him.  I talk a lot about Sugar Bear and his diagnosis and his journey, but today I wanted to take a look at the non-diabetic sibling.  The one who learned as much at the hospital.  The one who has given his brother a few shots and tested his brother's blood sugar.  The one that allows people to feel comfortable watching Sugar Bear because his brother is there with him.  The one that is phobic when it comes to needles and turns green at the sight of blood.  I want to talk about him because he is important and I don't know what I would do without him.

Before August of 2013 we had homeschooled both the boys.  Drago (the teenager) had tried to get into a school in 2012 but wasn't picked but he was picked for 2013. So in August of that year he started his first brick and mortar experience in 8th grade.  It was a big transition.  He has some fine motor skill issues so writing and writing a lot was a struggle.  He needed a lot of attention as a confidence booster that he could do this.  We were focused on him.  He went to his first dance.  He made new friends.  When Sugar Bear started showing symptoms that we now know were type 1 we easily were able to rationalize them away.  The bed-wetting must be from his anxiousness of not having his brother around as much.  His irritability might be from the same thing.  The weight loss was a growth spurt with him getting back to his earlier body size.  His hunger was just a growing boy.  And it soon became the holidays with all that entails.  The focus stayed on Drago.  Then that horrible weekend after Christmas and everything turned upside down.  The focus became Sugar Bear and Type 1 diabetes. 

Drago visited the hospital, the first time while Sugar Bear was in the PICU and not responsive.  Drago didn't talk about it.  He seemed to take things in stride.  When Sugar Bear was moved to a regular wing, Drago came for the education.  My needle phobic 13 year old even allowed himself a saline shot to know how to do it.  He might have enjoyed giving me my shot a little too much, but he did it.  We all did.  When the three of us (hubby, myself, and Drago) took the test that would allow us to take Sugar Bear home, Drago did the best.  At the hospital we were told that Drago had a slightly higher risk of developing Type 1 since he now had a sibling with it.

We came home.  We worried. We cried.  We stressed.  We changed.  All the while, Drago went back to school not really having had a Christmas Break.  I let the school know what had happened just in case my stoic teenager started having issues.  He didn't.  He knew the focus was on Sugar Bear.  Sometimes things would slip that he felt like Sugar Bear got "better" treatment.  Some resentment on the new snacks in the house that were for Sugar Bear also popped up.  But overall, Drago seemed the most adjusted of all of us.  He got a concussion in school in gym class in the Spring.  He started having headaches and missed a lot of school.  It was challenging for him.  I worried.  I stressed more.  He finished out the school year with straight A's.  No easy feat in normal circumstances.  He did the JDRF walk in June with us.  He proudly wore his bother's shirt.  No complaints.  He rolled with the punches.  He got to have a little break when he went to camp the end of June beginning of July for a week.  But then he came home to find out his brother had had two seizures.  Back to our reality.  Back to stoicism.  During all this time I tried to get the TrialNet done with him.  But because of some local snafus it never happened.  So I would periodically check Drago's blood sugar.  He hated it.  It was always normal.  In July, we lost a good friend that Drago adored.  We went to a funeral.  We went to a family reunion.  He stayed stoic.  August school started back up, and it was back to the grind for him.

And here we are, holiday season again.  Drago is 14.  He always seems hungry and thirsty.  He gets irritable easy.  All these can be rationalized as normal teenage stuff.  But then December 10th, my 14 year old wet the bed.  I freaked.  I checked his fasting blood sugar.  132.  I called Sugar Bear's endo.  They wanted Drago to come in for labs right away.  My needle phobic, stoic teenager lost it.  It was almost impossible to get him to go.  But he did.  He is amazing.  I held his hand while they drew the vials, the whole time looking into his beautiful brown eyes and talking to him about the things he loves, mainly Math and Physics and video games.  But I'd seen past the veneer that day.  He was a scared little boy in a young man's body.  I held him while he bawled.  We got the results later that afternoon.  All the lab work came back fine but we were still waiting on the antibodies results.  In the meantime Drago needed to test his blood glucose 2 hrs after eating and in the morning when he first wakes up through the weekend.  Sugar Bear had a few things to say privately to me like "Is it bad that I really hope he doesn't have it but I kinda want him to know what it feels like even for just a little bit?"  and "Mom, I know how to do my shots and testing so you can focus on Drago right now."  I cried my eyes out.  Please, please, please don't let my stoic teenager have to deal with this. Drago took to the blood glucose testing amazingly well.  I held him, my child that is as big as a man, while he cried with worry.  You see, I forgot that he worries about his brother.  I forgot that he worries he might end up with Type 1 too.  I forgot that he is grown enough to stress about these things and still make it look like nothing is wrong.  Stoic.  Brave.  Courageous.  I have two very amazing boys.  I love them so very much.

The antibodies tests came back all negative!  For now.  The worry is always there, but the stress of it isn't right now. Christmas break starts today when Drago gets home from school.  Maybe we can enjoy it this year.   

Friday, December 5, 2014

Let it Go

Almost two months without blogging.  I've missed it but just haven't been able to put into words all the feelings still churning inside me.  Nothing "major" has happened.

Halloween and our annual Halloween party both went fantastic.  Sugar Bear had a blast.

November was Diabetes Awareness Month and I spent every day multiple times a day posting on my facebook wall facts and info hoping that maybe I'll help just one person, or maybe help educate someone a little on what we go through.  I know I reached a few and for that I am grateful.

Thanksgiving was wonderful.  For the first time in years I didn't have to work.  I have a new job as of October 10th.  Their Grand Opening was the 13th and the evening before was a VIP just come and check us out night.  We went and it was crazy and crowded and fun.  Sugar Bear even did his shot in the moving vehicle in the parking lot because we couldn't find a place to park.   And they are closed on Thanksgiving.  It was fantastic.  Sugar Bear told us at dinner on Thanksgiving that he was thankful for a parallel universe where he doesn't have diabetes.  I'm thankful to have him.  I don't like to think of parallel universes because I know in one we lost him at diagnosis.  I'll stick to this reality, please.

This disease is so insidious.  No moment without a thought for it.  Even when he is sleeping it is on our minds.  It's constant.  We are learning how to incorporate it without letting it rule our lives but some days it is the dictator.  Shots in the middle of the night, juice for lows, adjustments of insulin, doctor appointments, constant blood sugar monitoring, carb math.......It doesn't rest, so neither do we.  Sugar Bear has had about two weeks of going low around 3pm and 6pm.  We adjusted with the endo and hopefully that will help.  But now he's not feeling his lows.  He had one of his lowest lows recently and we only caught it because it was snack time and time to test.  No symptoms.  No cold hands.  No sweating or shakiness.  That makes me nervous.    

We had our last endocrinologist appointment for this year yesterday.  His A1c was 7.4.  Three months ago it was 7.6.  Not bad, actually really good.  The next appointment in March is fasting labwork.  He has to have his thyroid checked regularly and right now he has gained too much weight.  We're hoping that more exercise will help with that but it's a vicious cycle with Type 1.  Insulin is known to add weight.  Exercise drops blood sugar.  Treat for the low.  More exercise.  More lows.  More calories.  But I have hope.  I have to.  We got this. 

We're coming up on his first "diaversary" and lots of things weigh on my mind.  Holidays have always been reflective for me anyways and this year it's a little more challenging.  I keep thinking back to how we, and especially Sugar Bear, were last year at this time.  20/20 hindsight and all that sucks.  I have to learn to let it go.  The what ifs and how did I miss's are just no good.  He's here; we go forward.