Suggestions?

So we are having a bit of an issue and maybe those in the DOC could give me a hand.  Sugar Bear is now refusing to do a shot a day and a BS check a day as he says "I already know how to do it so I don't need to keep doing it."  We've explained to him the importance as well as helping to establish habits like brushing teeth but these conversations always seem to end in his frustration and tears.  Any thoughts?

Waiting

Just a quick snippet that makes for contemplation.  Mostly Sugar Bear just goes with the flow with his diabetes.   Mostly.  He's pretty resilient and resigned with it all.  Just every once in awhile we get a window into how he really feels.  Yesterday after talking some more about the vaccinations and what they do, he said, "Wouldn't it be awesome if this group of shots cured my diabetes?  I mean, then I wouldn't have that anymore.  I wonder if it could."  Of course we had to have more conversation about how that isn't how all this works.  It's made me feel a bit weepy.  Listening to Leonard Cohen's Waiting For The Miracle to Come.  We'll go on waiting.

Protection

First official day of summer!  Wishing we were camping during what used to be our annual week long primitive camping trip.  I have fond memories of mud covered babies, lots and lots of friends, comfy clothes, and drumming.  We will go again.  Next time we will have to plan accordingly.  We were planning on going this year but then December 28th happened and our focus has been elsewhere.   On the other hand teenager will be leaving in 8 days for his very first weeklong without family camping experience!  He's totally excited.  We are in the midst of packing all his needs.  My biggest concern, his headaches.  He hasn't had as many (still having them weekly, but not as debilitating).  Hoping camping is not too hard for him.  The neurologist okayed it. 

We didn't go to the drive in this past weekend.  (We went last weekend and saw How to Train your Dragon 2).  They were playing the same movies.  I'm hoping next weekend before the teenager leaves we can see a movie there. 

In other news, we joined the mainstream and started the vaccinations for our children.  Okay, okay, okay, before you start screaming at me.  I am not one of those die-hard anti-vaxxers.  (Obviously.)  And I'm also not a "follow the herd" with everything type of person either.  Yes, we opted for a very delayed schedule.  Did we have our reasons for not vaccinating "on time"?  Absolutely.  Do we have reasons for doing so now?  Yup.  Are they all personal.  Pretty much.  Do I despise how people who don't vaccinate have been portrayed.  Um most certainly.  Just like my choice to homeschool my children, to homebirth my Sugar Bear, to breastfeed, to have a "natural" childbirth, to parent with gentleness, to cloth diaper, to use disposable diapers, to introduce solids later, to do organic, to not do organic, etc....I've always, and I mean always, have done my research and given whatever the issue a lot of thought.  I will say one of the main reasons for going ahead with Sugar Bear now and vaccinating him is because of his Type 1.  Would he have eventually gotten his shots?  Yes.  But because I missed this, because I missed what was going on with him and it almost cost him his life.......it was time.  They didn't need the chicken pox vaccine as they'd already had it.  They did get extra Tetanus since that comes with the DTaP.   Everything else is started.  And I mean everything.  Did we get some grief from both boys about getting the shots?  lol Yes, and they wanted to know why we didn't just do it when they were babies.  After our very personal explanation they thanked us and then reiterated how sore their arms are.  Just another layer of protection and I'll stay vigilant but maybe if they do develop one of these diseases that seem to be reaching epidemic proportions I won't feel so guilty.  Maybe.

 

It's Complicated

Much has gone on in the last few days out in the diabetes world.  Because of the ADA conference this past week, (which I would love to go to some day) there were numerous announcements.  One that will definitely effect us, the ADA (American Diabetes Association) has new A1c guidelines for children with type 1.  Another announcement was "Xeris Pharmaceuticals, Inc. Announces Dosing of First Patient in Phase 2 Clinical Trial of its Investigational Soluble Glucagon for the Treatment of Mild-to-Moderate Hypoglycemia".  There has also been much talk about the bionic pancreas and the wonderful work a parent of a type 1 has done on it.  All in all, there has been a lot to digest. (Pun intended).  But one of the blogs I read this week that hit me hard is as follows.  I know that doing everything "right" won't prevent complications.  We try to find a balance with physical and psychosocial issues when dealing with diabetes.  Should Sugar Bear never ever have sugar?  Could we have prolonged his honeymoon with a gluten free, sugar free diet?  Will he have complications because of us or just because of his physical makeup?  Or maybe he'll never have complications!  (A Mom's most honest wish). My job is to try and navigate these murky waters and bring us out as unscathed as possible.  He's worth it but it's "complicated".

Complication: the Powerful Word in Life with Diabetes

By Melissa Lee

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Complication.

That’s such a gentle word in normal parlance. A hiccup. A head scratcher. A riddle.

How will we fit an extra chair at the table? Oh dear, that’s a complication I hadn’t considered. How do you solve for X in this equation? Well, that’s a little complicated. Let me think. What’s going on between you and your ex? Eh, it’s kind of complicated.

To people with diabetes, the word complication is code for “quietly life-shattering.” It’s a code word for failure.

The list of possible complications from diabetes is ridiculously depressing. I’d list them here, but between direct and indirect correlation, the list would be so long that I couldn’t be sure to exhaust the possibilities. Essentially, if a system or organ requires nerves, blood, or oxygen, it’s fair game. Eyes, kidneys, heart, lungs, reproductive organs, skin, bones, stomach. I can’t think of a system that’s off-limits. It’s awful to think about. So we don’t. Most of us online, I mean. We choke it down and push it back and we don’t dwell on it.

Dr. Bill Polonsky (love him) likes to say, however, that well-controlled diabetes is the leading cause of NOTHING. That reassurance always bolstered me when I’d let my thoughts wander to darkened corners.

But then when I wander into the many parent forums where I lurk and see parents reassure one another with “but all of these people withcomplications, they don’t have the tools that we do. They didn’t take careof themselves like our kids will…”

It makes me stop and grieve for the parent whose child passes away while sleeping – the parent who was not to blame and was doing everything “right.” It makes me think of my friends with retinal problems or nervous system problems or tingling in their toes, regardless of whether or not they have managed their diabetes well.

And it makes me righteously angry.

We have to stop shaming the victims. Let’s stop writing our fellow PWD off as worst case scenarios. Oh, but it won’t happen to me. Surely that other person…they did something…or didn’t do something…what? to deserve it? Isn’t that the implication?

When I’m trying to prove to the world that I can accomplish anything with diabetes – that I’m a go-getter girl and that I’m healthy as a horse – my dear friend with the scar over her heart from heart disease doesn’t fit my narrative. Her truth is inconvenient and it makes me uneasy.

My friend whose diagnosis was nearly 20 years after mine and yet already has neuropathy in his feet. He takes good care of himself. His truth is inconvenient.

A few years ago, I was invited to an event by my local JDRF. I was alone at a table with four adult type 1 strangers…who all had noticeable vision-related complications. I was new to meeting other people with diabetes. I squirmed in my seat. A lot. I didn’t have a complication. Why was I spared?

By all rights, say some of us, it should be ME considering the care I once took of myself. It’s called survivor’s guilt.

I believe that we need to be more honest that this disease is ruthless and unfair and that the truth is that complications will befall some of us and others of us will remain unscathed. There are people who reach 50, 60, 70, 80(!) years with diabetes and have no complications. There are people who have had this for 5 years and have been hit with something unexpected.

And we all have the same diabetes. Regardless of type, regardless of tools, regardless of care, we have the same disease.

During the Diabetes Hope Conference last week, Ilana asked “How do we acknowledge the luck factor involved with complications while still acknowledging our own degree of agency?”

Jeez, I wish I knew.

I wish I had been able to sit at that JDRF event table and not feel simultaneously guilty and frightened by others’ lazy eyes and surgical scars. At that time, I couldn’t look past my own discomfort to see those people as more than cautionary tales. Victims of a dark era’s diabetes care. It won’t be me! I’ll recommit myself. I’ll…I’ll…

I’ll stop deluding myself. It could be me. It will certainly be someone I know and love, at least. In my time online, I’ve lit blue candles for children I didn’t know and now won’t ever meet. And I’ve said a lot of encouraging, supportive words to people I do know about their complications and their bad news.

And whether they tried or didn’t try, had the best care and tools and education or didn’t, it’s not their fault.

Complications are not your fault. You have been dealt a lousy hand. You gave what you could when you could. And though sometimes it may seem like you gave up, maybe ‘up’ was all you had to give.

This is a hard life, this diabetes.

The media and your cousin and your co-worker are quick to tell you about someone who didn’t take care of themselves and it’s as though they’re saying that that poor soul got what they deserved. And perhaps they’re just as quick to say, oh but you take such good care of yourself. It’s such an uncomfortable kind of reassurance.

It’s not your fault, and yet we must encourage you to do your best to stay one step ahead of it. To stay healthy. To give diabetes no room to try to take your health from you. BUT if diabetes inches in and chips away at the best of you, forgive yourself and one another.

Forgive yourself for the cobwebs in your eyes and the numbness in your feet. Forgive yourself for the lost limb and the hypo unawareness and the cataract and the frozen shoulder. Forgive.

I know.

It’s complicated.

He's Our Rock

When I started dating my husband he already had a son.  The baby wasn't 't quite two years old yet.  He and his Mom lived many different places and we only saw him sporadically throughout the years but he (and his Mom) taught us how to be parents.  I loved seeing my new husband with a child.  He's always had a sense of humor and a childlike inquisitiveness that translates so well with children.  He's a great Dad and I don't tell him that enough..   

Before we had our two boys, we both worked and played hard.  He did house restoration with his own Dad. During that time I had my own health issues with endometriosis and he was my support.  Then we had our first baby.  What a learning curve.  The teenager was a colicky baby and those first weeks my husband would drive him around while he screamed so I could sleep a little.  I became a stay at home Mom and did that for Ten years.  When the Teenager was four we had Sugar Bear.  Hubby was just finishing law school.  Sugar bear was a planned homebirth that turned into a mostly unassisted birth.  (Hubby was answering the door to let the midwife in and Sugar bear was already half way out). Hubby was my only support during that labor and was the best.  Four years after Sugar Bear was born and hubby had many health issues to deal with.  Both knees gave out on him and he had to stop semi-truck driving and have both replaced at the same time.  During recovery, we realized Sugar Bear had never seen Daddy taller than Mom.  We could dance again.  He could walk.  Then just a short time later he was diagnosed with type 2 diabetes.  We thought we'd had our share of health issues.  Hubby wasn't able to return to truck driving due to health issues.  At this point, I was helping him dress and feeding him.  He has lipping (where bone grows over bone) in his neck, psoriatic arthritis in all his joints, genetically fused ankle bones, psoriasis, vitiligo, diabetes, etc...He has many autoimmune issues and chronic pain.  And even through all of this he has basically kept a good attitude and a great sense of humor.  We love him so so very much.

So I went back to work and he stayed home with the kids, homeschooling them and each helping the other.

 

Then Sugar Bear was diagnosed with Type 1.  I've never heard my husband cry so deeply. It broke my heart. I thought we'd been through it all.  I thought we could handle anything.  We were tested.  This was the hardest thing we've ever gone through and continue to go through.  But through it all my husband has been our rock.  I went right back to work on Saturday after Sugar Bear's release from the hospital (even though I had been recommended by the nurses and doctors to take at least the weekend off before returning to work).  I was only able to do that because of Sugar Bear's Daddy.  He's got this.  He does the majority of the testing while I'm working.  We keep in contact through text and phone calls during the day.  We've made mistakes, but we keep on learning. None of this would be possible without him.  We need him.  We love him.  Honey, Happy Father's Day.

Just Like Him

Tuesday was Smart Teenager's last day of 8th grade.  It ended his first year of brick and mortar school.  Up to this point we had homeschooled him.    Sugar Bear decided to ride with us in the morning.

 After school we all headed back for Exhibition night where we got to see what the kids had worked on at the end of the school year and during their three week immersion courses.  Teenager did his immersion course called "History According to Hollywood".  It was with his favorite (and one of the toughest) teachers he had this year.  Exhibition night was tough for Sugar Bear.  His numbers had been high once again all day.  By the time we were at the school he was having trouble keeping emotions in check.  We were only their maybe half an hour and he "melted".  Full on tantrum prone on the floor.  Teenager was a school ambassador so he wasn't "with" us at that moment but he did happen to be walking by with a family he was helping as his brother is loudly crying and laying on the floor.  We (hubby and I) picked up Sugar Bear and quickly walked him out of the school and to the van while whispering to the Teenager to just ignore us.  I felt so bad for all my boys.  Hubby sat in the van with Sugar Bear and calmed him down while I headed back in.  His BS was 231 when we'd gotten to the school by the time we left it was 136 (okay, so one number was in range).  It was tough on all of us, but I am so proud of both boys.  Teenager with his concussion even managed to keep all A's.  He's such a hardworker.  Oh, and their was frybread!  One of the immersions was a multicultural one run by a woman with Choctaw and Blackfoot family.  She was making frybread and my nose totally found it (luckily this was while hubby and Sugar Bear were in the van--I have no idea how to carb count frybread-I'm going to need to figure that out and soon). 

One of the coolest exhibits were these carved wooden puzzle figures.  The puzzle pieces were organs.  Sugar Bear's first comment was "Where's their pancreas?"  None of them had one.  So our assessment was they were all diabetic just like him.  :)

All in all it wasn't too bad of a day.  Just stressful.  Our normal.