I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Wednesday, August 29, 2012

The Greatest Fear

Jess and I have been working so hard on her diabetes these past few weeks.  It is an immense amount of work but she has rarely been over 200.  I have been thrilled...she has felt good...and I have just been hoping we can continue it so that her next Hemoglobin A1c kicks butt.

And, then tonight I checked Facebook.  A seven year old died in bed of hypoglycemia.

The "Dead in Bed" syndrome that every Type 1 parent I know fears.

This is the down side of good control.

What are we as parents to do?

If we don't aim for strict control we deliver our children to adulthood with years of the devastating effects of hyperglycemia.  Jess was diagnosed at seven.  By the time she is eighteen she will have had Type 1 long enough to have retinopathy and other complications starting.  She is too young to understand this in detail, and too young to fully manage her disease.

But, by working hard towards strict control, the risk increases that she will have a fatal low.

I don't know fear greater than putting a child to bed and praying they will be alive in the morning.  No matter how positive I remain it is always there.  Those first steps past her bedroom in the morning when I pause at the door to look for the rise and fall of her chest.

My heart absolutely aches for this family.

We need better technology.  The FDA must stop the slow approval of life saving devices.  We need the artificial pancreas with its auto shut off functions when a low blood sugar is detected.  We have been waiting on technology here in the United States that Europe has had for months.  It is inexcusable.

Sunday, August 26, 2012

Back To School Jitters

Sending a child back to school with diabetes is no easy feat.  I remember hearing a story of a T1 child that went to school and the preparation was a bag of candy that was given to the teacher with the instructions "If he acts funny, give him some of this."  I sincerely hope that story is nothing but a story, and my heart breaks for that child every time that I hear it.

I have prepared to the best of my ability.  The nurse has all of Jess's supplies.  The teachers have their "crash course" sheet on Type 1 diabetes, and their forms I made for the unexpected substitute, the letter for the parents in Jessica's class that will largely be ignored (kindly asking them to let us know before unexpected treats are brought in...).  I reviewed all of the laws regarding a 504 from the Office of Civil Rights, and had a meeting with the principal, counselor, teachers, nurse, and district psychologist that went better than I could have dreamed.  Plans are underway for the 504 that will protect Jessica's safety, and allow her to reach the potential she would have had if her pancreas had not gone on strike.

Jess and I have spent the past two weeks meticulously managing her diabetes.  She has been a trooper brainstorming with me ways to get her numbers in line before the start of school.  We have kicked butt and I have wished her Hemoglobin A1c could be based on two weeks and done tomorrow.

And, the big day is tomorrow.

So, of course all hell breaks loose.

She wakes today with a blood sugar of 64.  Just when I thought I had nailed her overnight basals.   She levels out before breakfast only to rise to 302, followed by 397 after a correction.  Just as I am about to pull the site, she plummets to 81.  She then has repeated lows, alternating with highs.  All of this with her barely eating a thing.

"I'm not hungry" she tells me.  "My stomach is a wreck."  We spend a long time talking.  Of course, she is scared to return to school.  The lone T1 in a sea of working pancreases.  Not to mention the normal start of school jitters every child is prone to.

I don't know if that is why her numbers have been a mess today, but I do know it hasn't helped.  "What if my numbers do this tomorrow?"  I reassure her we will work through it just like we always do, and she won't be alone.

I know she'll be fine.  She is so brave.  I struggle with stage fright and public speaking, yet watch her practice her power point that she will give to her class to explain what diabetes is.  I know she will weather this transition from summer to school once again, and emerge stronger than before.

The transition is hard for me too.  She has been safe this summer---watched closely by myself or her wonderful babysitter with Type 1.  She attended CWD where she spent the week in a cocoon surrounded by other Type 1's.  It is hard to watch her return to the "real" world where she is alone and I can not protect her.

Yet, I know this is her life story.  It will form her and make her into the adult that I am beginning to see glimpses of.  These back to school jitters will be just one of many obstacles she will have to encounter.  And, she will.  Broken pancreas and all.

Wednesday, August 22, 2012

Site Change Phobia

Jess and I have been working hard on site changes.

I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes.  I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child."  And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child.  I know he is right.  I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her.  I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl.  And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.

He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue.  This really made me think, and was a life changing lecture.

In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot.  We had fallen into the same pattern with site changes.  She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building.  The hubby and I have approached this different ways.  I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning.  The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more.  Neither of us knew what to do or how best to truly handle her anxiety surrounding them.

It took talking to other families living with Type 1 and this lecture to help me understand why.  As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby.  As many times as I and others have told him it is not his fault she has Type 1, the guilt remains.  It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains.  And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.

As luck would have it Jess had a site failure shortly after I heard this lecture.  The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon.  Much to her protests, I told her we were doing the site change in the bathroom.  She panicked and was not happy, but we did it in less than 5 minutes!  Victory!

When we returned home I took over site change duty.  I hate it.  But, I know the hubby hates it more.  We did well...accomplishing all of them in 5 minutes or less.  And, a HUGE moment.  Jess did the first one completely on her own.

But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again.  The drawn out site changes began again, and she stopped doing them on her own.  She had two in a row that hurt and her anxiety escalated.  Once again the anticipation and anxiety became the worst part.  She once again became her own worst enemy.

It is frustrating and heart wrenching to watch.

I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all.  I told her we are making a game out of site changes and doing them in a different room every night.  Tonight we did a site change in the garage.  My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine.  I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.)  I basically yelled at her to "Push the button, push it now!"  I hated myself, but she did it and it worked.  And, it didn't hurt.  Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?"  It is like she needs to hear this to force herself to do it.  But, we are making progress.  She has done the last two in new areas of the house and pain free.  And, in under 5 minutes.

This is such a balancing act.  On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly.  On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.

My heart so bleeds for her.  I can't imagine how she will do this the rest of her life.  I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.)  It has been an effort to come home every night and review all of her numbers and make changes.  I am determined to see better blood sugar control as we enter this new school year.  I mentally groan when I realize it is a site change night.  I am so incredibly sick of it all.  There is never, ever a break.  Every vacation, every second it is there.  I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days."  It has been almost three years, and enough is enough.  I just want it to go away.  And, the guilt just fills me.  How dare I feel this way?  If it is this exhausting for me, how must my husband feel after 23 years?  How will Jessica feel as the years march on?  I freaking hate this disease.

But, I will keep working.  I am determined to help her conquer this site change phobia.  I couldn't protect her from getting this, but I will give her the tools she needs to fight it.  And, I will stand and fight it with her.