Where oh where does the time go?

I am so sure it hasnt been months since I’ve posted.  Except it has.

Life is living itself in fast forward whether Im on board or not.  It does not slow down no matter how nicely I ask or how pissed I get.

Let’s catch up!  Braden got a CGMS – the NEW Dexcom G4.  I’ve only been asking for this ever-loving piece of equipment since diagnosis, yet hear we are almost a year later and just getting started.  Which leads me to the next bit of news – Im firing Childrens Hospital Diabetes Clinic and we have our first appt early in December.  It feels damn GOOD to take this step.  While Im thankful we had resources when Braden was diagnosed, I quickly found the flaws of a large clinic’s care, and its not for us.

Hmmm, lets see.  I almost thought I lost Nolan at the park today.  Yes, my life is now 10 years shorter.  He was hiding from me ON PURPOSE and I was panicked and screaming.  He was laughing.   I told him that if he hides from Mommy a monster will get him.

Not a practical parental response, but he’s obsessed with monsters right now so its sure to do the trick.  And we’ve rehearsed “What happens if you hide from Mama?” 

“E monsser gonna get you”

Yes, thats right.

The reality of it all

You know, I have come to terms with the fact that Braden has diabetes.  I hate it, and I struggle with it everyday – but I have come to terms with it 9 long month later.  What I havent come to terms with is that Nolan can develop it, and that its a black cloud hovering over us year after year until one day he does develop it – or he makes it to adulthood where his changes are less likely.

I see EVERY sign and symptom in Nolan –  from excessive drinking, peeing through diapers, not eating and slow growth to excessive sweating.  We’ve had him tested for the antibody in April and he did not/does not have it.  Although, it doesnt mean he cant develop it at any time.  I’ve caught a few low fasting blood sugars (60 and 62), which are lower than norm but not too low for concern.  I’ve tested him plenty with finger sticks and tested his urine for keytones randomly all good results.  His A1C was normal, thyroid panel was normal, and endocrine levels were normal.  So am I imagining these symptoms???

I cant stand the wait and see.  He could never develop diabetes, or he could next week.  How’s that for comfort?

A Case of the Crazies

Do you know whats maddening about diabetes? Well…everything.  But more specifically, as of this week I cannot explain the numbers.  Usually (or thus far) I can look back at the information and figure out what went wrong.  For the past 11 days – I don’t know what the hell I’m doing.  And it’s literally driving me crazy.  I think about basal rates in the shower and second guess carb counts at school drop off.  I mess up doctor appointment schedules, and over cook dinner when analyzing weekly blood sugars.  This is not me.  I am organized dammit!

I am letting diabetes run my life – and I don’t know how to stop.  How does a mother not worry?  How can I relax with so much uncertainty?  How do I sleep after seeing  an unexplained 46 on the meter at bedtime?

Even worse, I don’t think many people understand.  Our CDE continues to tell me I need to stop “obsessing” or “trying to control” the numbers. I feel like they don’t see the importance of those numbers long run, or don’t care because they see it so much.  Are they that unrealistic that something horrible couldn’t happen?  Or that the raging highs wont cause complications down the road?  This is my SON.  How could I not obsess?  I can’t fail him, it’s not an option.

I’ve thought about therapy, but honestly unless that therapist is a Type 1 Diabetic or the parent of a Type 1 Diabetic I don’t see that helping.  There’s that missing link that is necessary for someone to understand what is going through your head and what everyday life is like with Type 1 Diabetes.

So this morning, I’m drinking my coffee feeling misunderstood, crazy and exhausted.  The great news about that is Braden woke up this morning happy, healthy and not letting blood sugars get him down.  God I love that kid.  If only I could learn half his resilience.

the blue candle

Nine months ago, I had no idea what a blue candle meant – or that it even existed.  Nine short months ago, I rested easy at night, and complained of all the mundane parenting issues everyone goes through.  Nine months ago, I lived without fear. Nine months ago, I knew nothing of Type 1 Diabetes.

Today, I stare at blue candles everywhere I look online.  Those blue candles mean someone was lost again to this horrible disease.  Type 1 Diabetes took another life – of a child – and these blue candles hit me like a brick wall when I see them.  They remind me of the fear, of our reality and of the ultimate sacrifice.  And again Im back at day one in the hospital, head spinning and overwhelming sadness and fear.  My heart holds hope that one day Braden can live without that fear, and we can put these blue candles out for good.

I have to believe.  I have to hold hope. The alternative is more blue candles.

Kindergarten here we come!

I mean, my goodness!  My baby is really going to Kindergarten!  Im not ready. FOR SURE.  But he is, and he’s incredibly excited!  There are so many reason’s I have vomit creeping up my throat everytime I think of leaving him with complete strangers, but he needs this and I need to realize I cannot keep him in the same room with me his entire life.

My head is swirling with thoughts: How well will the teacher pay attention to his symptoms?  Will he be comfortable enough to tell them when he feels low?  Will he eat? Will he be too active for his basal?  What time is gym?  How far is the nurses office?  How much does she know D care?  Has she ever used an Omnipod? Is my carb count off? Is he happy? Is he safe????

But today isnt about me. Today is Braden’s day to be a happy healthy 5 yr old Kindergartener.  My heart explodes with love for this guy!

Lows are SNEAKY!

I think I can say that Braden doesnt have tooo many lows.. but when he does, they are SNEAKY!  Like it just happens to be a night daddy & I go out to dinner, or are stuck in traffic, or take a walk to the park.  Out of no where and our guards down – Braden tells his grandparents he feels shaky and he thinks they should check his blood sugar.  (good job buddy-proud mommy!) 50 and an hour of active insulin :( WHY?  He has pasta and lots of it?  He ate all but 2 bites, drank all his milk and wasnt very active. Stupid sneaky pancreas popping up to remind us of the scary reality? Yes.  I guess so. Jerk!

Sleep

It’s such a simple word, but yet so difficult to accomplish round our parts.  Sigh.

Im exhausted!  And my body (or brain rather) is not letting me sleep!  If its not checking blood sugars, its comforting Nolan at 3am, or going to the bathrooom, or tossing and turning, and Daddy leaving at 5am – finally I just give in and give up on it. So Im clipping coupons at 6am while the kids and dog are fast asleep.  At least my coffee is yummy!