Wednesday, August 26, 2015

A Series on Gains

Initially I could see NOTHING that could be considered a gain with the diagnosis of Type 1 Diabetes.  So much was lost the minute we heard those words.  So many hard things were ahead for our precious little girls.  How could ANYTHING be gained by a disease that strives daily to take our girls' lives?

When I first posted about 'loss' I asked other parents to share what they felt was lost.  From that question, some also shared what they felt was 'gained'.  At the time, that sounded so foreign.  So unrreal.  How could anyone think ANYTHING positive could come from T1D?  I felt the devastation it was causing deeply. I saw the fear in my girls eyes every time I had to poke their fingers or stick them with a needle to give them insulin.  Positive?  What could be positive about any of this?

Yet, here I am.  Sharing some positives we have discovered from this road.   We are now almost 6 months into this new journey and I CAN see some positives; some things that have been GAINED as a result of this diagnosis.

A big one?


Our girls are SO brave.

That's something they have gained.

With the new school year starting, posts of kiddos going for their yearly check-ups are all over my Facebook feed.  I've seen numerous times how little ones have had to have multiple shots for vaccinations and maybe a finger poke to check for lead, iron, or possibly even glucose levels.  Responses to such posts have included numerous people applauding the bravery of these little ones.   I'll admit, prior to our girls' diagnoses, I did think they were brave when they had to get their vaccination shots and did so with minimal tears.  Now?  Now I KNOW how brave our girls really are.  When I saw the posts on kiddos getting shots, I couldn't help but think, "our girls go through that every day before they even eat breakfast."  It's surreal.  It's sad.  Yet, it does demonstrate just how brave they have become.

Both girls used to be TERRIFIED of shots. They hated them.  Selah would cry hours before her appointment if she THOUGHT she was going to get a shot.  Now?  Before every meal, large snack, and bedtime she just bares her little leg, tummy, or tush in preparation for her life saving insulin shot.  It's just part of life. She doesn't cry.  She rarely even cringes.  Same with Trinity.  She can even give herself her own shot.  Not to mention the multitude of times each day they have to prick their fingers to check their blood glucose levels.

When my mom was in ICU I saw her fingers.  She had been on steroids to clear her lungs and the medication had caused her blood glucose levels to rise.  They were doing finger pokes multiple times a day to monitor her.  As her health declined, those 'finger pokes' didn't heal, as our girls do.  I could see the black, bruised, pooling blood that was showing through the surface of her skin.  I cried.  For her, but also because I realized, THAT'S what I put my little girls through every day, many times a day, and will for the rest of their lives.

Talk about being brave.  I know some days their little fingers hurt and they don't want another poke, but... they also know they don't have a choice.  In order to give the proper amount of insulin, we need to KNOW their blood glucose levels. So... they suck it up and check their levels.


Definitely a gain.

Friday, August 21, 2015

Our New Normal

It's been 5 months since Selah's diagnosis and 4 since Trinity's.  The journey we started was so overwhelming. Especially in the beginning.

The emotions.
The carb counting.
The insulin dosing.
The finger sticks.
The fears.
The knowledge.
The lack of knowledge.

Everything was hard.  My emotions were raw. I was worried ALL the time.  I was scared. The girls were scared.  It seemed like life as we knew it was over.

In many ways that was true.  Our lives did forever change when we heard the words "you'r daughter/s have Type 1 Diabetes."  So many things will never be the same.  They will live with this diagnosis for the rest of their lives.  They will be poked and stabbed DAILY, multiple times a day, just. to. survive.

Yet.... despite that.... despite the hard adjustments, life is getting back to a 'new' normal.

Figuring out carbs isn't so stressful.  Calculating insulin dosages based on blood glucose levels and carb intake has become second nature.  Worrying has lessened - a little - thanks to the Dexcoms on the girls' arms giving us blood glucose reading all throughout the day. We can monitor the trends in their numbers and make adjustments as necessary.  The fear of a deadly low - although still a very real possibility - is less frightening because we can see them coming on with the Dex and make corrections as needed.

I finally emerged from my 'fog of grief' as I like to call it.  With so much hitting at once, I did recoil.  I cried - a lot.  I slept - a lot.  I did the bare minimum to get by, but other than that, I. was. in. a. fog.  

The girls' diagnoses; my mom's hospitalization; Selah's Hashimoto's diagnosis; my mom getting worse and passing away; then Selah's positive diagnosis of Cealiac -- it seemed more than my mind could handle.  

By the time the diagnosis of Celiac was confirmed, I was already beginning to come out of my fog.  I was ready to hear those words.  It was and still is hard to accept.  So many more changes.  But.... I was in a better place.  The emotions of the previous 5 months had been smoothed over a bit.  They weren't so ragged; torn; wide open. The wounds were beginning to heal.

We have started yet another journey.  Now we are traveling the roads of T1D AND that of Celiac.  They are bumpy, curvy, hilly, pot-hole-filled roads at times.  Nothing seems to make sense day to day on these roads. The curve you thought was ahead is now straight, yet the hill you thought you just crested now looms ahead larger than ever.  The pot holes seem to come out of nowhere.  But... you keep rumbling on.  You have to.  There's no going backwards.  You can't turn around and go back to your starting destination.  Plus, some days, these roads are lined with beautiful meadows of flowers and a smooth surface.  Some days the skies are blue and beautiful.  So, you drive forward.  Always striving for THOSE portions of the highway.

This IS our new normal and... it's ok.  Is it hard?  You bet.  Does it take a lot of work and effort?  More than you can imagine.  But, it's also very necessary in order to keep our girls healthy and alive. So.... we push on. We learn new things. We make adjustments.  We persevere. THEY persevere.  

I did a series of posts on "What was lost?" with the onset of Type 1 Diabetes in our girls.  Today's post is a catalyst of "What's been gained?"

Although we are still fairly early in this journey, I can already see some positives.  When we first heard the words, "Type 1 Diabetes", I wasn't sure I'd EVER see positives from this horrible disease.  My grief was too deep, too raw.  In reading posts from other parents, some did have 'gains' they shared.  I was happy to see those, but couldn't feel them... yet.  Couldn't even IMAGINE them.  I know I have a long way to go to see as many positives as were shared by others, but... I can at least see and even feel SOME already.

Join me in the coming posts to hear what we've learned over the last several months that has caused my attitude to change.  Much of it is time, as time does heal, but some of it is perspective and growth as well.

Come along on our journey. 

 It's gonna last a lifetime.  

Until a cure is found.