Show Your Hope!

I’m at a loss again tonight…words seem to escape my rage filled heart.  Another precious life gone too soon because of Mitochondrial Disease.  Another family is grieving over the loss of their sweet child.  Another sobering reminder shakes me to my core reminding me that each moment is Precious, Not Promised.

It seems like, no matter how hard we try -  we find ourselves constantly swirling in the chaos of day to day life.  Between our spouses, parents, children, work, social media, social life, hobbies, extra-curricular activities, medical appointments, therapies, school…we barely manage to squeeze an extra breath in before the day is done.

And, when all is said and done…when we close our eyes to slumber, we still somehow cannot escape the frenetic and exhausting rhythm that carries us into the next sunrise.

And through it all, there is a soft whisper that beckons us….hopelessly yearning for us to hear it…reminding us that each moment is Precious, Not Promised.

Despite the whisper, the ever monotonous hustle and bustle ruthlessly drowns out the plea…and moment after moment slips through our fingers – unnoticed.

The whisper that once was….becomes a a fervent cry  audible enough that it sometimes stops us momentarily…and for that moment, that sweet, blissful moment…we find ourselves soaking in the essence of even the most mundane and seemingly unimportant occasions.

But even still….it is not enough, the call of the day to day suffocates the tears of our patient whisper…and moment after moment pours into the abyss of regret…unnoticed.

And finally, when there is nothing left…when almost every sweet and blissful moment is nearly extinguished by our careless ways, that whisper screams with rage and heartache because it knows that the moment has passed, the tears will fall, and regret will soak our every breath.  It mounts one final desperate attempt….and, in the 11th hour, somehow it manages to rise up from the ashes of ‘too late’ and pierce our hearts with a deafening scream.

The time is now….

Embrace it.

Cherish it.

Hold it.

Love it.

 

Live it.

We only have each moment ONCE…and no matter how deep our anguish, we will never be able to retrieve, replace it, or change it.

Don’t let precious moments pass you by because life got in the way.  It’s so easy to get caught up in the chaos, the responsibilities, the technology.  Sadly, even I am guilty of it more than I’d like to admit.  But lately, the whisper has been screaming at me – begging and pleading for me to slow down, step back, give more, fear less, and live every second as if I will never get it back, because – truth is….I won’t.  None of us will.

And while we may never be able to get back the moments we’ve lost…we have the power, the privilege, and the opportunity to hold steadfast to the ones before us and fiercely embrace them.

Each moment is Precious, Not Promised….the choice is yours what you will do with it.

Love and Light,

Stefani

Last night I had a few friends over for what we call, “Game Night” at our house.  One of my good friends stopped at Hannaford Supermarket and bought some cookies.  She even picked up some flowers for me as the cookies contained chocolate and eggs (both of which I am allergic to) and she wanted me to be able to ‘enjoy‘ something.  My first instinct was to scrutinize the labels of all 4 boxes of cookies (she purchased 2 boxes of Oatmeal Raisin and 2 boxes of Chocolate Chip).  Because my son had anaphalyxis to peanuts a few years ago and almonds last year, we are extremely careful and read EVERY label on EVERYTHING Will eats.  My friend jokingly said she already ‘vetted’ the cookies and they were nut free, but I told her that I always double check.  Sure enough, none of the boxes noted any nuts within the ingredient list or the allergen list.  I opened the boxes and Will decided to try both cookies.

About 5 minutes later, I saw my husband scouring the same labels I just had looked at.  I overheard him saying to Sasha, “Well, you can have the Chocolate Chip cookies…” – to which I quickly replied, “She can have them both, neither contain nuts.”  He gave me a puzzled look and said, “The Oatmeal Raisin cookies have walnuts in them.

Imagine my confusion when he said this.  I mean, I knew that I had carefully checked the labels, how could I have missed that????  

I briefly glanced at the cookies when I opened the box, but – my brain was not thinking to check for nuts – I actually thought that the walnuts were just oats.

I quickly jumped up to re-read the labels…NOPE..no nuts, PHEW!

But Ralph quickly burst my bubble of relief when he then pulled out one of the cookies to show me that there indeed WERE nuts in those cookies…walnuts to be exact.  I was mortified…I had just handed over a box of cookies and watch Will eat a potentially deadly treat.  I called Will over to me to see if he was okay, and at that point…he was totally fine.

I paged the on call immunologist, who thankfully answered within 2 minutes of the page.  He instructed me to give him Atarax and watch him closely through the night.  I gave him the Atarax and we crossed our fingers and hoped for the best.  About 20 minutes into the ordeal, Will complained of some mild itching, but it never went any further than that, thankfully.  Ralph went up with Will to his bedroom and stayed there until it he drifted off to sleep.  We busted out our old infant video camera and trained it on him and went to bed, with one eye open.

At 4 a.m., Will woke up with all over body itching…but no other symptoms.  He fell back asleep.  The rest of the night was uneventful…but Ralph and I didn’t get much sleep as we were worried about Will.

Given all of Will’s serious medical issues, this could have been worse…MUCH worse.  Thankfully, Will is apparently not as severely allergic to walnuts as he is almonds.

He clearly had some sort of reaction, but nothing that required emergency intervention like his almond exposure did.  We dodged a bullet….

But here’s the concerning thing -

I called and spoke to Hannaford’s manager last night.  I explained to her what happened and she was extremely apologetic.  She stated that they only have ONE type of boxed Oatmeal Raisin cookie in their bakery – and it’s always been labeled this way – which means that these cookies – CONTAINING WALNUTS have NEVER been labeled as “Oatmeal Raisin Walnut” cookies – they have always contained walnuts and it has NEVER been labeled as such.  HOW DOES THIS HAPPEN???

She was shocked that NO ONE has EVER brought this to their attention before and told me that she would notify corporate.   I told her that I had no idea why quality control wouldn’t have caught this and I INSISTED that she go one step further and IMMEDIATELY pull every single box of cookies from the shelves in EVERY store.  I told her how dangerous it is to have these boxes of cookies mislabeled, especially given how serious and life threatening nut allergies can be.  Hannaford, (which is owned by Belgian Delhaize Group, a company that owns and operates 1,500 stores along the Eastern Seaboard), hopefully will listen and take this seriously.  I went into the Chelmsford Hannaford this morning, they had – indeed, removed the cookies from their shelves.  The store manager, Kevin, was also very apologetic and was going to work from his end and contact all the local stores around here and let them know that these cookies contained nuts.  He hadn’t heard back from the Corporate office (so no official action to notify ALL their stores about removing the mislabeled product has been taken), but he said he would follow up as soon as I left.  Until then, he was going to work hard to get the word out as best he could.  I was pleased with the response we had locally.

I wonder how many unsuspecting tree nut allergic adults and children have eaten these cookies (after vetting the labels) and had an allergic reaction…without realizing it was the cookies that triggered it.   And my fear is that our experience will not be taken seriously.  Which is why I am sharing this with all of you.

Let this be a STARK reminder that, even though there are labels on foods…they are not always accurate, which could be potentially life threatening for some.  Who’d have guessed that, after reading and re-reading labels (that we are supposed to trust) – that you’d have to then break out the microscope and inspect the food?  What’s next, do those of us with food allergies have to test it to make sure the labels are accurate before ingesting it?

It’s unacceptable…absolutely UNACCEPTABLE.

We are supposed to be able to TRUST our local supermarkets and the labels that we go by to protect ourselves and our loved ones from senseless and life threatening exposures.  Last night was a CLEAR and SOBERING wake up call that this sadly is no longer the case.

SO WAKE UP FOLKS: Buyer Beware….

I couldn’t believe my eyes when I read the date of my last blog here – January 29th!  That’s a far cry from my usual ‘every 2-3 weeks‘ rule that I’ve kept strongly to since I started this blog.

I was also surprised to see that, despite my lack of posting, my blog has surpassed the 30,000 hits mark with readers from 134 countries around the world! I want to thank everyone for following us on our journey through HOPE…

And….I guess I have some explaining to do while I attempt to give you an update….I will do my best to keep this short!

On January 5th, our hometown was rocked by a devastating and deadly fire.  2 precious lives were lost, 1 child was severely injured, and more than 30 people were displaced from their homes – losing everything…including their vehicles.  Feeling helpless but willing to help…a few of us in town joined efforts and formed the Woodcrest Fire Relief Effort.  By mid January, efforts were in full swing, we were working closely with those affected and our fundraising efforts continued.  Our amazing group worked tirelessly day and night until February 15th, when we held a charity auction for the residents.  When all was said and done, the relief effort raised more than $60,000.00 in one month and 3 weeks.  It is a testament to how amazing Chelmsford is.  Words can’t express just how awesome our town is…instead, I’ll show you:

*The following photos are all courtesy of Eric Sciacca*

And, of course….in true fashion – not even 12 hours after I got home from the event (which completely wiped me out and left me running on fumes and in the middle of my own crash), Sasha had a medical crisis that landed her inpatient at MGH for several days.

I then focused my time on helping her get back to her baseline (which took several weeks) and trying to figure out what was going on with Will (who was also having some issues).

All the while, Ralph was working hard to finish up the basement so Will & Sasha could do their school work down there (yes, they are still out of school and are not likely to return until the fall).

  During this time, it came to light that Beast has been having some cardiac issues and there’s a possibility that the issues stem from a metabolic origin.  We literally broke our bank with testing for him, but I knew in my gut that something was wrong and I am SO glad we pushed for answers because, sadly – we were right.  Honestly, I’d do anything for him….Beast is our world and he deserves no less than the best.   We still don’t know 100% what the cause is of his 300 beats per minute + heart rates and the temps of 106.8 with only 6 minutes of activity….but it’s clear something isn’t right.  The vet has been amazing and has been working with others in the practice and outside the practice to figure out what is going on (only us, right?).  The consensus was to put him on ‘light duty‘ and begin the process of obtaining another service dog.  While the thought of this breaks my heart, the reality is that Beast comes first…

I just barely began to catch my breath from all of this when illness hit me…and I landed in the hospital for 5 days (because when I do things…I go all out, ya know?!?!?) BUT….I still celebrated going more than 2 months between hospitalizations (that was my trend). For the first time in more than 2 years, I went 3 months between hospitalizations!

Nonetheless…it was really rough going…

It took me several weeks to get back on my feet again, but I did…and, have been doing much better than I have been in years.  I’m still not great, but I feel like I’m making progress…I keep telling myself ‘slow and steady wins the race’ (although, as you can tell – neither of those are in my vocabulary).

There’s SO much more to catch you up on - SO much GOOD to update you on….but it will have to wait until the next post – which I PROMISE will be within the next week!!!!

For now, I am going to wrangle in the Munchkins….one with a severe migraine (super weepy and in a lot of pain) and the other one tired and grouchy – it’s time get them ready for bed!

The next 7 days will be full of appointments and difficult discussions – so, if you could please say a prayer that the path we need to take is clear and that we handle the answers with care, we’d really appreciate it.

Love and Light,

Stefani