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.

Tuesday, April 30, 2013


I am changed.  Not that this is a huge revelation.  We are all changing every day.  But, this was a big change.

I had gotten used to being the mom of a type 1 child.  I don't like it.  But, we have found a new normal.  We have found a home in Children With Diabetes.  It is still a constant, daily, exhausting struggle.  But it is a struggle that is now normal.

Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through.  And, that includes medical school, residency, and some pretty tough situations.

With all of those other situations, including Jess getting diagnosed I felt I was in control.  It may not have been an accurate perception all of the time, but it was at least a nice delusion.  There was no way I could delude myself that I was in control of any part of Courtney's situation.  And, things just seemed to spiral out of control.  The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident...  It was just one of those weeks where absolutely everything felt like it was spinning out of control.

Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life.  Not knowing how things would go.  Not knowing what she would be like.  Was the Courtney I know going to be the Courtney after this surgery?  I've unfortunately seen way too many complications and bad outcomes.  They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery.  In my mind I had gone to worst case scenarios.  She bleeds to death.  She's paralyzed.  She suffers brain damage.  Sure, I could tell myself that these were very unlikely.  We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over.  But, I could not stop the thoughts from coming in the middle of the night.  For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad.  Friends and family carried me through.

Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced.  Weeks of constant chest pressure evaporated.  She was awake.  Smiling.  Talking.  She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.

The hospitalization was surreal.  The night in the intensive care unit was the hardest.  I was in a fog where every two hours Courtney was examined and poked.  At one point they told me they were ruling out diabetes insipidus.  Diabetes.  The word that haunts us whenever we think of Courtney...the child not yet affected.  Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.

Sometime the next day we were moved to a regular pediatric floor.  I continued in a surreal state.  Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium.  Sleepless nights with frequent vital signs and neurologic checks.  And yet, it also felt like a break.  Even as I write that I realize how pitiful that sounds.  I had one job in the hospital: to be Courtney's mom.  I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework.  I just had to be Courtney's mom.  And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing.  It was a simple, surreal existence.  I remember thinking so many times that I could breathe again.  That constant chest pressure was gone.  I could finally see beyond the surgery.  Courtney was going to be okay.

As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults.  Never did Courtney panic.  I never saw her cry in pain.  She would simply push the button for more narcotics.  She handled things better than I did, and better than I would have by far had I been the one having the surgery.  Children simply amaze me.

And, now we are home.  She is still recovering, not yet back at school.  It will be awhile before she can run and play again.  Things must heal.  But, her Chiari is cured.

I wonder how this makes Jessica feel.  I know I have thought about it.  As absolutely acutely horrific as this entire experience was, Courtney is cured.  Jess continues her battle, her cure still elusive and unsure.

Our daily life with diabetes in back.  Relentless, exhausting, but yet our normal.

And, I am thankful.  I missed normal.  I missed my delusion of control.

I look at Courtney and Jess differently.  As with all parents, I always imagine I could not love them more.  And, yet especially after this it has exponentially grown.

And, I am changed.  My perspective has changed.  I have learned twice now not to take my children's health for granted.  I hug them tighter.  I listen closer.  I am thankful for this forced time with them, without the distractions of a stressful job.

Both my children carry visible reminders that they are warriors.  Jess with her calloused fingers, and pump.  Courtney with her incision that will become a scar.

They, too, are changed.

Monday, April 8, 2013

The Gray Zone

So, here's the thing about Type 1 diabetes.  It may be a 24/7 emotionally hard, exhausting, unrelenting disease filled with painful site and dexcom changes, but to my scientific brain it is clear what to do.  We have a big study that demonstrated the lower the HgbA1c, the less likely certain complications are.  That's not to say that the body always follows those rules.  Certainly many people invest all their energies towards good blood sugar control and still end up with unfair complications.  But, I don't know that many would argue that blood sugar control is important and will likely lead to improved health.

So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.

This thing with Courtney is all about the gray zone.  And, I am so NOT ok with that.  I like data and proof and evidence.  And, there is none.  Two surgeons THINK she needs the surgery, but they don't have any data to back that up.  Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse.  But, they don't KNOW.

Now her blood tests show her blood is just a bit too thin.  It COULD be nothing.  But, once again we just don't know.  It COULD also be a genetic condition that might increase her risk of bleeding.  And, even if it is a genetic condition and we identify it, it is unclear how to treat it.  We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing.  And, we just don't know.

If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about.  But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)

So, here we are in the gray zone.  At the end of the day, I just have to try to have faith that things will work out.  But, the problem is that so far my children seem to not do well with the statistic game.  And, I've seen far to many bad things happen in my career.

So, I am struggling.  I don't like living in the gray zone.

But, I don't have a choice.