Helpless

Tears.  So very many tears.  My husband's best friend passed away yesterday on the heals of two other deaths, my cousin and another friend of Hubby's that was struck by lightening in Colorado. But this last one....we were still reeling from the most recent ones.  And both of these are part of the same group of friends.

Chuckles was a great guy.  Always there, even though he lives in another state.  Solid.  Sweet.  An amazing Dad and husband.  His daughter is only 10.  And the bestest of friends.  Family.  Funny.  He talked with my husband just about daily, the very last time on Saturday.  They considered each other brothers.  He called me Sis sometimes.  He died Monday evening.  Unexpectedly.  He was napping.  When his wife got home he was gone.  I can't fathom it.  He was going to be coming this week for the other friend's funeral.  None of this is right.  None of this is fair.

When Sugar Bear was in the PICU that first night with labored breathing and we didn't know if he'd make it, Chuckles called me at 3am, just to be a support.  To be the calm in my silent void.  That's the kind of guy he was.  Comforting.  He's always been there for us.  This blurb doesn't do justice to the man he was.  I'm at a loss for words.  He was loved.  There is now an emptiness that will always exist.

We'll be attending two funerals.  Two too many.

The Navigator

No longer waiting to exhale.  In the last 24hrs we've had five numbers in range!  Five out of eleven.  It's a start.  At least the rest of the numbers have dropped out of the 200s.  We'll take it.  These two weeks have been super stressful.  We're all exhausted but the weight has lifted somewhat from my heart.  Fingers crossed that we've turned this corner.

I was able to go to a spontaneous dinner with my Mom's cousin last night with less anxiety than I've had for two weeks.  It was so nice to see him.  We talked for hours.  He's a really great guy.  He has diabetes too (2), and we talked some about it.  He also has a child with health issues that will require a kidney transplant down the road.  It was wonderful to just talk with someone who has such a great outlook on life even with his own stressors that would get anyone down.  When our children are battling health and social issues and we have very little control we look for anything that will help us. My Mom's cousin has the ability to cut to the heart of it.  He gets it.  He navigates.  He reads.  He researches.  I hope that Sugar Bear will have these tendencies too.  I want him to be able to take the wheel and chart his own course.  But for now we'll be his pancreas and his co-captains.

Diabetes Sucks!

Just a little over 6 months. Since we left the hospital we've done: 755 shots of insulin,  1,476 blood sugar tests.   Half a year.  184 days + about a week.  Hmmm.  That's how long my baby has been fighting for control of this beast. And every day, every moment, every test is a fight.  Some are easily won and some are battles we have to win. Some days are easier; even some weeks, but right now...

We have a new activity to add to our diabetes experience list besides seizures now, it's called the high blood sugar shots in the middle of the night (midnight and 3am).  I'm hating it.  He's hating it.  We can't seem to get his blood sugar in range (ever since the ratio changes in response to the seizures).  Highest number we've seen in the last week: 336.  Lowest: 57  That averages to 187 for 7 days.  I'm so sick of the high numbers.  It makes Sugar Bear tired and irritable.  Also with every high number that shows up we hear "I swear I haven't been sneaking anything" which just breaks my heart.  It's not his fault.  It's not anyone's fault.  We called the endocrinologist again yesterday and changed the Lantus back to what it was but left the new ratios for corrections.  I still had to give a shot at midnight and 3am last night.  This sucks. I wanted to write more, but I just don't have it in me.  I'm saving my energy for this ongoing battle.  Diabetes sucks! 

Shattered

I haven't written at all for awhile.  My heart has been heavy.  My eyes weepy.  Diabetes has been kicking our butts a bit.  I hate (not even a strong enough word) the monster lurking always ready to tear apart my baby, my family.  Our teenager headed off to camp a week ago.  He was nervous.  He's never been to camp.  He's never been away when we haven't been able to at least talk with him on the phone.  Sugar Bear wasn't too happy to have him leaving.  But everybody was a bit excited too.

 

 

After dropping him off on Sunday, Monday and Tuesday seemed pretty normal.  Sugar Bear's numbers have been running high but not horribly so.  And then between Tuesday night and Wednesday early morning, Sugar Bear had what we now know is a focal seizure due to dropping sugars even though he wasn't out of range (remember the boy at the drive in ?  yup, that's what that is).  It was just like after our JDRF walk and amusement park day.  I guess I was always under the impression that a seizure would look more like thrashing and foaming.  I knew it was uncontrollable.  That night after the JDRF walk had been the scariest and loneliest moment since diagnosis for me.  I knew it wasn't "right" but just couldn't explain it.  When the first one this week happened, hubby and I were not on the same page.  The stress caused us to fight.  He didn't understand.  We had to force sugar into our little guys mouth.  He wasn't there.  I knew it.  I hate it.  It makes me want to cry again.  And then to have the added arguing with my husband....well, wednesday and thursday were tough.  Work didn't help with my stress levels being a holiday week and all.  Anyway, and then thursday night.  Here is what my husband had to say.
 
A post from my husband:

"Sugar Bear had another CNS event tonight (thursday, July 3rd) at our friends' house. He was sleeping on the couch when we came down to collect our things and go home.  He was in a cold sweat and not responding. His sugar level was 85. Not out of range but on the low end of where we like to be this time of night.(midnight) This requires the eating of food. Sugar Bear could not come out of his event enough to eat. Swiping any hand that came near him, crying, shaking, angry refusal with no words. It is scary and it comes on from nowhere.

Two days ago I posted on facebook a rather abrupt post about diabetes. I didn't have the words to describe what I had seen. I didn't have the words to describe what was ripped apart between me and my wife in mere seconds. I didn't have the words to explain the helplessness I felt. I didn't have the words to describe what I was witnessing. Our son Sugar Bear is a vibrant, intelligent, sensitive, and caring 9 year old. He can be stubborn but it's normal. Tonight I witnessed a second episode much like the first one. We were at a friends house. It unfolded like this. The invite came while I was out dropping off recycling. Our friends wanted us to come for dinner. We scrape by on next to nothing so a steak dinner is a rare treat we usually don't pass up and these wonderful folks were just back from a trip to California for a wedding and there was some catching up to do. It was about 5:30 when I figure out what we are doing and my wife tells me she'll just meet me there at our friends' house after work. Sugar Bear usually eats around 6 but we were still running errands. At 6pm he tested himself in the back of the moving van (he's done this three times now--he's awesome) and was at 100 which is a low middle stable sugar. He ate 15 carbs and we proceed to finish our errands and head to our friends' house arriving around 6:15 figuring those carbs would carry him to the late dinner and we would get another baseline sugar before eating.
We have done this with him before at times when we go out. When we got to dinner time at 7:30 he was 165. It's a little high but we know from past experience he is active with our friend's children so we feed him dinner and give insulin after 15 minutes. We decide to drop a unit because he will play with his friends for a couple hours and he burns more sugar when we are out. At 9:30pm his sugar is a very high(for us) 241 so we give him a snack(normal) and a single unit of insulin as correction for the high per the ratios with which we are currently working. At 10pm his night time slow acting insulin goes in without a hitch.
Pictures finally came in on the Camp website where our teenager has been for most of the week with no contact so we are in a really great place...our son who is off at camp seems to be having lots of fun. Our son who is with us seems to be having lots of fun...we relax and play Cards Against Humanity with our friends. It seems to be a great evening. We wrap up our game and my wife heads down to check on Sugar Bear while I chat a little with our hosts. Their son comes up and tells me Sugar Bear is having a problem like the other day...My heart sinks, I know what he means and this is the second moment like this in two days. That's two too many. Nothing can reach him in this state...you must figure out somehow to get sugar into his system because he is chemically incapable of pulling out without it...it was the scariest 10 minutes of my life. I want to avoid these events as much we can. May you never. Back won't release. Stomach in knots. Neck is stiff and aching.

So I want to say this about independence day. We are none of us independent. We are interdependent. In the biggest sense, and I get it now, community is God is all of us in community with our universe. As parents we will not be free of this thing which exists in our son. He will never be free of what it does to him and how he will live his life. So with a heavier and more resolute heart I bid you love and strength to get through your challenges and immovable moments. I bid you know that your friends are there and love you. And finally I bid you grace and triumph over that loneliness which protects your softest place that you may share in the genuine trust of one another."


Sugar  Bear remembers nothing from these events.  After he starts coming out of it he's shaky and a bit weepy.  Vulnerable.  It breaks my heart into millions of pieces.  Hubby called the endocrinologist on Friday the fourth and the doc explained what these are and how serious they are.  We changed some ratios and the night time insulin and adjusted when corrections happen (no more unless he's above 250 after 9p).  So scary.  So unnerving.  So awful.


Friday morning came.  I got some news from my family that my cousin who was 32 had passed away.  I went to work.  I'd only had 3 hours of fitful sleep.  So much stress.  So much anger and sadness, but it was a holiday.  I had to go.  On the way in to work, hubby called.  He was nervous.  He's physically disabled and after our evening it was frightening for him to be alone with Sugar Bear.  He's worried about how he could handle one of these seizures.  They take a little physicality to get sugar into him.  I assure him he's got this and I could be home in 20 minutes and if it's where he can't handle he calls the hospital.  We both are quiet.  He knows I love him.  He knows I trust him.  But to hold a life in your hands like this....it's so heavy. It's so worth it. I work with my heart and soul at home with my man and my baby.  The updates on text and phone calls allow me to pause and breathe.  Work is rough.  I get through it in a fog.  The day after a seizure is recovery.  All are exhausted.  But I have saturday off to collect our teenager and regroup as a family.  


Saturday we drive almost an hour away in the early morning to collect our camper.  We listen to our diabetes playlist.  It's a collection of songs we're all contributing that somehow relates for us to this awful disease.  Sugar Bear's most recent one he wants added is called Game Over.  We aren't ready to add it yet.  It's his sense of humor but makes us smile nervously.  The one that resonates the most with us this time, Leonard Cohen's Anthem. 
"Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in"

We pick up our other baby.  Sugar Bear is so happy to see him.

 On the ride home we have to tell the teenager what has happened after stories of camp fun.  We have to bring reality in so he's not shocked if we have another of these seizures.  Innocence is shattered.  We pick up the pieces and let the light in.