Monday, July 21, 2014

Hope Springs Eternal

While sitting on the couch last night taking a break from the movie we were watching I decided to click on Facebook to pass the time.  I saw a post by a fellow D dad.  His son and Riley are very close in age and dealing with the same all-consuming stupid disease that is Type 1 diabetes.  We’ve been “friends” for years.  I know little about him.  But, the only thing I really need to know is that he hates Type 1 diabetes as much as I do.  And, he has the same ache in his heart for his son that I have for mine. 

I clicked on this video.  I knew it was about the clinical trials being done now to test the bionic pancreas.  I’ve been reading some about it.  Just the other day I found out one of the participants is a little girl whose mom has a blog I used to read.  She was just one year old when her pancreas decided a permanent strike was in order.  I was so happy for her and for her family.  I also thought how great it would be for Riley if this artificial pancreas thing pans out.  And, then I promptly put it out of my mind. 

Like I said, I knew it was going on.  But, I’d kept myself on the fringes of it.  I knew about it but I didn’t really want to KNOW about it; didn’t want to get too close to it.  I didn’t even realize that’s what I was doing until last night. 

The video began innocently enough.  I was watching.  They were explaining what Type 1 diabetes is and how they were able to fund this trial.  They show the kids running around, splashing in the mud, playing games all while grinning from ear to ear.  I felt a little lump forming in my throat and the sting of salt water behind my eyes. 

Then, it got to a part where they show a group of girls sitting around a table.  The camp counselor is explaining that 8 of the girls will be on the bionic pancreas for the next 5 days.  And, during those days their diabetes will be cared for exclusively by this little medical device.  That means there will be no sugar checking, no carb counting, no activity restrictions, no middle of the night sugar checks; you know, those things all the rest of us take for granted every day.  There was clapping and a countdown and smiles all around. 

And, then I lost it.  I started bawling like a baby.  I was overcome with emotion that this is going on, that this is REALLY happening.  This isn’t some far off in the future, maybe-one-day-we-can-hope-for-this-kind-of-thing that we diabetes parents are used to.  We’re used to hearing “this might be possible one day” or “whenever we can get enough funding”.  But, “Hey, look, this wonderful awesome thing that will benefit your child, it has come to fruition and we’re getting to test it and the findings so far have been great.”?  Yeah, we don’t hear that too much.  Like, not at all. 

After the video was over, I sniffed for a while and wiped my eyes and got my emotions under control and went back to watching the movie.  But, something felt different.

Today, I watched the video again, this time with Riley sitting by my side watching it with me.  Out of the corner of my eyes I watched as a grin spread across his face as he took it all in.  When the guy said that the device would do all the work, Riley turned to me, his grin widening and said:  “That means you wouldn’t have to get up in the middle of the night and check my sugars anymore.” 

Really?  That’s his first thought?  Not, “Yay me!  No more sugar checks, no more carb counting, no more having to factor this in to soccer practice.”  No.  His first thought was for me.  I wish I could take the credit for how awesome he is.

Of course, by the end of the video I was bawling again.  Riley looked at me in that pre-teen my-mom-is-crazy way and galloped off to his room to build worlds and mazes on his computer.

I sat there, a familiar feeling in my chest.  It took a moment for it to register what it was.  It was like a scent you catch on the breeze and it makes your stomach flutter but you’re not quite sure why.  Then, it dawned on me what it was. 


It was hope. 

Hope that one day Riley really will be able to just live his life without giving thought to whether what he is doing or eating may affect his blood sugar.  Hope that when he goes off to college I won’t be up at night wondering if he’s up at night checking his sugar.  Hope that when his first child is born or he’s standing at the altar waiting for his bride to walk in that diabetes will be the furthest thing from his mind.  Because, he won’t have to think about it anymore.

I don’t know when I pushed hope to the background.  I don’t think I ever gave up hope.  But, somewhere along the way I gave up hope on hoping. 

How did that happen?  Hope has been my mantra almost from the moment Riley was diagnosed 8 years, 9 months, 15 days, and 2 hours ago.  I even have the word “hope” emblazoned just under my left collarbone.  A reminder that no matter what, all is never lost.

I realized I had given up hope on hoping for one simple reason: what if it never happens?

But today, instead, I’m thinking: what if it does?

Oh. My. God.

What if it does?

Tuesday, January 14, 2014

Type 1 Diabetes Invades Another Home

I was sitting in the gym early Saturday morning.  While waiting for Riley’s basketball game to start I got on Facebook on my phone.  I had a message.  When I checked it, it felt like my heart immediately sank into my stomach.  The message relayed that a girl that I’ve known all her life, a little girl the same age as Riley, was just diagnosed with Type 1 diabetes.  Immediately upon reading it tears stung my eyes. 

I spent the rest of the day reliving the day Riley was diagnosed.  Little images would flash through my mind.  I thought of that morning at home, checking his sugar because I knew something just wasn’t right.  I remember gasping when the meter flashed “HI” instead of a number.  I remember running around in a fog trying to get things together to take with me.  I knew, knew deep down, what was wrong and I knew he’d be admitted to the hospital.  I remember throwing his sheets in the washer before leaving, because he had, yet again, wet them during the night.  (A sign of high sugars.)  I remember berating myself over and over for letting him have a pop tart and apple juice for breakfast. 

Saturday night, in the middle of the night, each time I got up to check Riley’s sugars, the girl and her parents would come to mind.  Each time I silently said a prayer for them.  They came to mind off and on the next day too.

Last night, I missed a phone call.  When I checked my messages I heard the voice of the girl’s grandfather.  He said he was just calling to check and see if I had the same number so he could pass it along to the girl’s mother.  I was glad he was doing that.  I am more than happy to offer support.

Again, a flood of emotions rushed in.  I kept thinking of the girl’s mother.  I kept wondering what I would say to her and if I’d even be able to say anything at all.  Every time I thought of it, I would start to cry. 

I completed some chores and then I ran a nice, hot bubble bath.  I sat in the tub as tears streamed down my face and made tunnels in the bubbles.  I ached, actually ached, for this girl and her parents.  Again, old emotions surfaced.  Emotions of guilt for not realizing Riley’s symptoms sooner.  Feelings of guilt for passing along faulty genes to him.  But, mostly, I remembered the feeling of complete and utter helplessness.  I remembered wanting to “fix” my child, my baby, and being completely helpless to do so.  I remembered crying and screaming at God to take it away from Riley and give it to me.  I remembered hour upon hour just sitting on the couch in a fog watching Riley play and run around looking for any sign of a low.  I remembered staring at the clock, consuming myself with when it would be time to check his sugar again.  I remembered chasing Riley around the house to hold him down to give him a shot.  I remembered the feelings brought up from hurting my child to help him.

When I got out of the tub I thought about writing this post.  Then, I decided maybe I should wait.  My emotions were too high and I knew it would be nothing but a downer post.  Things look and feel different in the light of a new day.  I needed to feel what I felt and I needed time to process it so I could move on. 

The thing it all comes down to is this:  Type 1 diabetes sucks.  It sucks big time.  There is no, ifs, and, or buts about it.  Once this disease invades your house, your life and the life of your child will never, ever be the same again.  Type 1 diabetes is like an uninvited house guest that no matter how hard you try to ignore will just not go away.  It comes in and changes the whole atmosphere.  It changes how and when you eat.  It changes how and when you sleep.  It doesn’t leave and give you some space to just enjoy birthdays or holidays.  Nope.  It’s always there.  Always lurking.  Always, always, always demanding attention. 

BUT, everything is going to be OK.  This girl will be OK.  She’s smart.  She’s an athlete.  She has a great support system.  Her parents will be OK.  They will learn, by trial and error, what works for their daughter. 

This girl will go on to do and be whatever she wants.  Diabetes will not stop her.  Diabetes will not define her. 

In the light of day, I see that now.  My mind knows it to be true.

Intellectually, I know that everything will be fine.  But, my Mama-heart aches.  It knows the pain and the sleepless nights.  So, while I know that life will eventually be a new normal for this family, my heart aches for all that it takes and will always take to make that new normal happen.