Thursday, April 27, 2017

Spring Clean-Up

I spent the weekend working around the house and more specifically, the backyard deck.  After serving a twenty year cycle of Michigan weathering, the lovely deck had finally given way to something closer to mush than wood.  The dilemma was instant; replace or repair.

Due to the massive influx of financial needs while raising teenagers (oh dear friends, you can not save ENOUGH to help this issue), the answer the ONLY answer was to repair just enough to make it through another (hopeful) five - ten years. Which, if these people of mine do become doctors, will place us smack dab in the middle of PHds.  

With determination to save as much as we could, boards were removed and replaced.  Pieces that could be salvaged were cut and repaired.  Three coats of protective stain was carefully added and the results were indeed beautiful.  A little maintenance, some hard work and a whole lot of time was all the deck really needed.

Since the bulk of the project was mine, I had plenty of time to think back to the last time that we worked on the deck.  Our daughters were little.  I remembered how hard it was to balance the time needed to wash and clean the deck with checking blood sugars and ensuring that lows were far, far away.  I remembered how I could only do a little section before I felt the stress and worry of what was happening with their blood sugars. I remembered feeling a compulsion to have snacks on the ready as though I was preparing for a disaster relief effort.  It felt as though any attempt to do anything except manage T1D was insanely difficult.  I remembered crying and thinking that we should just move to a place where nothing else needed our attention because the T1D monster was such an overwhelming beast.

Yet, it happened.  We got through that point in our lives.  Decks were cleaned and stained while managing blood sugars and supervising little children.  Life was hard but it never stopped us from doing anything that we wanted or needed to do.  We dug deep and continued on, crying a little and complaining to each other and yet, reaching our goals.

Some of my closest friends that had walked the T1D journey before we arrived had explained this phenomenon to me.  They had shared that one day, it would be easier.  I never really knew if I could believe them. However, it is true.  With each age and stage of T1D, life does change and it does get easier.  If you are raising little ones with T1D, I can assure you that one day, the stress of repairing or replacing will possibly outweigh the stress over checking blood sugars.

In fact, you may even find yourself longing for a little one that ensures that you take a break and enjoy a snack of a little peanut-butter and jelly sandwich too.

xo

Monday, April 17, 2017

Middle of the Night Alarms

I live in Michigan where the weather can be a mixture of April snow (two weeks ago), 80 degree days (two days ago) and seasonal nights.  While my allergies do not love this practice, to me, there is nothing better than opening a window at night and enjoying the first fresh air after a long winter.

Last night, I did just that.  After opening the window and then, tossing a bit as the unfamiliar noises became familiar again (why does a chirping bird sound louder than a dryer tumbling tennis shoes??), I finally drifted into a deep sleep.  And to be clear, this moment of sleep is so fantastic, that I feel completely calm and relaxed, even on a eve of a very busy week.

Well, as the law of parenting with T1D happens, sleep is just not meant to be.

Suddenly, a deafening scream shot me straight out of bed.  Panicked, I raced into our youngest daughter's bedroom, opened her phone to check the CGM and at the same time checked her little finger with the meter.  124 mg/dl.

Shoot.  Wrong child. In our world, it is a 50/50 guess when you are completely out of it and forget to check your own phone before running down the hall.

Swiftly walking into our oldest daughter's room, I repeated the same series of steps and again, a great but slightly surprising number shot back, 178 mg/dl.  What in the heck was that noise??

Thinking I imagined the noise, I tiredly crawled back into bed, checking my phone to ensure the volume was on and tried to fall back to sleep again.

The scream came again and this time it brought along a series of shrieks and crying.  Sounding almost like a baby, I worriedly again hopped out of bed but this time, went straight to window.  Ridiculously peering out but in the dark, knowing that looking for anything, and really a baby??? - how would that even be possible.

The sounds didn't last too long and eventually my tired brain sorted out the reality that it was most likely a coyote, and well, probably a mating coyote at that.

However, for everyone that finds it easy to sleep through CGM alarms, might I suggest this to be a new sound for both Dexcom and Medtronic?  Guaranteed there will be no sleeping in!

Monday, March 13, 2017

We Need A Cure

I rarely focus on the details surrounding the back story of our youngest daughter’s dx.  I wrote about it here when I started to write NaturallySweetSisters.com.  Once the initial story was on paper, I have wanted to keep the wound closed in hopes of fully healing.   Although, as long as my girls are living with T1D, I am not sure if that will ever be possible. The vines of T1D entangle every ounce of our beings despite my attempts to prune them.

On Friday, and in the way that life is full of twists and turns (and bigger vines), our youngest daughter’s best friend started writing her own family diagnosis story.  Her youngest brother was also diagnosed with Type 1 Diabetes. 

Processing the news of anyone having a diagnosis of T1D is painfully hard but knowing the family intimately for years, made the news hurt even more terribly.  Forever, a new T1D dx is truly like a punch in the gut. It completely takes your wind away.

The call from my mom friend on her way to the ER was poised and scared but also, full of strength and hope. As she sweetly shared, she knew ‘us’ and we showed her that it will be ok. As I listened, I felt like such a faker as T1D is anything but easy.  Just hours before the call, I had been awake, tending to my oldest sleeping daughter and giving her not one, but two juice boxes so her blood sugar with stay high enough to get a few hours of sleep.  While I may have told her a little bit here and there, I work hard at trying to not let T1D consume us, so not everything is shared.  Knowing this wasn’t the time to admit anything negative, I squashed my feelings and left her with more positivity, hope and strength, along with the promise to alert people that I knew within the medical community. 
Hanging up the phone, I fully exhaled and then through my tears, realized that I needed to share the news to my girls. Having just attended a ‘Breaking Bad News Seminar’, I tried to think of the words that could be used and how best to share.  The reality is that there is no way to deliver any type of bad news message while sparing someone that hurt. 

As the morning crept closer to pick-up time at school, I ruminated on our diagnosis stories.  I remembered my baby being so sick, so frail that at age 3, she weighed as much as some 1 year olds.  I remembered the inability of triage to poke her for an IV.  And oh did I remember. I remembered the tears.  The buckets of tears that were shed from her, from me, from my husband and later when things had ‘calmed’, our oldest daughter. 

Then, the learning came.  The foreign medical language, the decoding of acronyms, the medical procedures like injections, infusions, therapies; the understanding of the chain of medical command – that all people wearing white coats were not doctors and the vast array of insurance, pharmacy, and DME needs.

And it took years to figure it out and to believe in ourselves, that WE were experts.  There were good days and bad days.  Days that played nice and days that shook us to our core.  I became the mom that I am today.  I gave up listening to other parents about things like ‘independence’ and ‘helicoptering’.  Instead, I focused on keeping my child alive and ensuring that they were learning while living kids first, diabetes second.  Some people left out friendship circles and others came in. 

A second dark day loomed and our oldest was diagnosed.  I tried to stand in front of the train of T1D to stop it by calling everyone and anyone that had a connection to research.  This diagnosis gave us a gift with six insulin-free months and yet, like a ticking bomb, not one of those minutes could be used to stop the destruction of beta cells.  Humbled and determined, we continue on. 

Until today, where another diagnosis brings us to our knees.

When I told the news of her friend’s younger brother, my youngest daughter looked at me with wide open eyes and said, “Maybe I am contagious”. 

Then she started to cry. 

There are no words to explain the depth of her pain.  She cried and cried some more.  Knowing from decade – plus of living with T1D, that the world would never be the same for him, his siblings or her family, she cried deeply and painfully. 

This is why we need a cure. 

We reassured her, even though she knew, that there was no contagiousness in T1D.  Her questions of ‘why’ remained unanswered as none of us really know. 

We need a cure.

Sweet babies, little boys, little girls, teenagers, adults, friends, family or strangers should not have to live with Type 1 Diabetes.  The needless pain, suffering, and burden of care must end. 

And we are close.  Research is doing more than ever to help us get there.  But it’s not fast enough.  

We needed a cure yesterday.

Yes, we need a cure.


We need it today.