Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

2015 DBlog Week: Keep it to Yourself

While I’m pretty transparent about our life, there are some things I just don’t feel comfortable talking about here. To be honest, I don’t actually know what all of them are, because I’m pretty sure many of them haven’t even happened yet.

That being said, I just want you to know I understand.

If you’ve ever had to make the choice between a tank of gas and a test strip copay, I understand.

If you’ve ever sat up in the middle of the night, fretting over a glucose level while eating through an entire shelf in your pantry, I understand.

If you’ve ever cried for no reason, but for a million reasons at the same time, I understand.

If you’ve ever stopped believing in your dreams, I understand.

If you’ve discovered new ones you never wanted to find, I understand.

If you’ve watched life wander by, and wondered if you’d ever find joy in it again, I understand.

If you’ve ever looked in the mirror, and stared confused at the stranger in front of you, I understand.

If you’ve ever felt alone in crowded spaces…or crowded in quiet places, I understand.

If you’ve ever been stuck at a crossroads, and opted to remain stagnant instead, I understand.

If you’ve ever been terrified to move, to breathe, or to speak for fear your world would crash, I understand.

I show you the stuff I want you to see, but there’s a story behind the silence.

Thank you for understanding.

This post is part of the 6th Annual Diabetes Blog Week. To read more Keep it to Yourself stories, click HERE!

2015 DBlog Week: I CAN

Ten years ago, I knew.

Deep inside this (candy) heart of mine…I knew.

I knew something was wrong. I knew it was more than an occasional saturated diaper. I knew it was more than a simple childhood virus, but I was too afraid to push harder for an answer. I wasn’t ready.

I couldn’t.

I was right. Something was wrong. Very, very wrong. On July 25, 2005, she was diagnosed with Type 1 Diabetes. The room stared at me – the nurse – expecting that I would step up to teach my husband how to give our daughter a shot. Instead, I sat in a rocking chair, holding our sleeping baby, suddenly afraid of every needle on the planet. I was horrified that this is how she would live…how we would live…

I couldn’t.

At home a few weeks later, settled in for the night…I still replayed the doctor’s instructions in my mind over and over again. When to eat, how many carbs to eat, what to do if she was low, when to test for ketones, when to correct, when not to correct…I drifted off to sleep, and something forcefully woke me around 2 or 3 am. It literally shook me out of a deep sleep and forced me to check her blood glucose level for no reason. I found my baby sleeping soundly with a BG of 38. She barely responded when I was trying to force her to drink juice. I was sure I’d never sleep through the night again.

I couldn’t.

Fast forward a few years, and it was time to start preschool. All the other moms smiled and waved, then went back to their cars. I smiled and waved, then went to the office with my double stroller, newborn, and toddler. We’d sit there for the next three hours so I could be readily available because the staff didn’t feel confident about having her in the program.

I couldn’t.

She was invited to birthday parties, and sleepovers, and swimming playdates. I watched as other kids showed up to navigate these events on their own, but stuck around and didn’t go home. I slept on couches, and passed out cake. I helped monitor poolside, and took care of anything I could so I didn’t get in the way. She wasn’t ready to manage diabetes on her own yet.

I couldn’t.

And then, one day, I could.

I could face the diagnosis and do the shots. I was able to learn how to balance overnight BG monitoring and sleep. I left the preschool…then kindergarten…then, in the blink of an eye, 5th Grade. We figured out birthday parties, and she learned how to handle sleepovers.

Looking ahead, there’s so much yet to come.

Adolescence has arrived. Soon to follow middle school, high school, her first date, class trips, proms…eventually, her first job, driving, and college.

History has taught me I can do this.

WE can do this.

This post is part of the 6th Annual Diabetes Blog Week. To read more I CAN stories, click HERE!

Dear Tameka,

Ho.ly. Shizzzzz.

The past two years have been full of heartache in your world.

First, you lost your son, Kile, in 2012 after a he was hit by a jet ski while tubing behind a boat on Lake Lanier. Then you nearly lost another son, Usher Raymond V, last summer to pool drain entrapment when his arm got stuck while trying to retrieve a toy.

Now one of your boys has been diagnosed with Type 1 Diabetes. (You’ve probably heard by now that Usher mentioned your son’s Type 1 diagnosis on the Today Show yesterday.)

Really, Universe?

REALLY?????

Enough already.

My heart resonates with yours, because I’m also the mother of a child with Type 1 Diabetes. Not only that, I lost my older brother to suspected pool drain entrapment when I was a little girl. He was 9, and I was 5.

It’s nowhere near the same…yet very much the same.

Even though I haven’t lost a child of my own, I saw my mother’s struggle with grief as she tried to move forward, creating a sense of “normal” in the wake of my brother’s death. I fully understand the hole left in the family, where a child’s smile and laughter used to dwell…the emptiness that never goes away.

I also understand the moment you stand in shock as someone tells you that your child will die without receiving life-sustaining insulin by injection multiple times a day or via an insulin pump 24/7/365 for the rest. of. their. life. The moment you witness your child having a low blood sugar. Trying to figure out how to count every carbohydrate they eat or drink. The thud in your chest when they cry because they don’t want to be poked again. The seemingly endless pile of manuals attempting to outline how to raise a healthy child with Type 1 Diabetes.

It’s overwhelming.

Added to grief and healing over previous tragedies, it must feel downright mind-boggling at times.

I want you to know that there are many people living very fulfilling lives with T1D, along with parents who are raising children with T1D out there, and they’re happy to support you as you navigate the journey ahead. If/when you need a friend, please reach out. (Sidenote: That goes for Usher too!)

Here are some ways you can get connected:

First and foremost, check out the You Can Do This Project. Because you can. (Also, here’s my video.)

You’ll also want to check out the website www.ChildrenWithDiabetes.com and perhaps even consider making plans to attend the most amazing T1D conference experience EVER – Friends For Life 2014.

There’s a Tweet Chat every Wednesday night from 9-10 pm EST. Just hop on Twitter and look for the hashtag #DSMA (Diabetes Social Media Advocacy). You’ll find a blend of people with all sorts of connections to diabetes (Type 1, Type 2, LADA, and a few others) who share unique insights using a prompt from the moderator.

There are also DSMA live chats, where you can listen to a topic of conversation, submit commentary, and even call in to add your two cents.

There’s a slew of Diabetes Blogs out there, many that talk about life specifically with Type 1. You might be surprised at how connected you feel after reading some of their stories.

Diabetes Art Day is also a popular event in the Diabetes Online Community (DOC).

Anyway, I just wanted you to know that you aren’t alone. There’s a lot of people rooting for you, Usher, and your family.

Welcome to Type 1.

Photo-A-Day: Advocate

dmpad 5

 I won’t always be there to do it for her.

As her mother, I believe it is my responsibility to teach her how to stand up for herself in this world.

Originally posted in July 2013 over at Type 1 Nation, I’m re-sharing this post about our journey to the 2013 session of JDRF Children’s Congress through advocacy.

I stood next to my baby’s hospital crib, staring at the cardiac monitor and multiple IV pumps. Her little face was incredibly swollen, and she couldn’t open her eyes. She was barely conscious, responsive primarily to painful stimuli. Every 15-30 minutes she moaned as someone poked holes in her innocent little body – arterial lab draws, multiple attempts for venous access, finger and toe pricks. As the night progressed, she slowly began moving around more, and eventually called out for me.

“Mama.” 

At first it was just a soft whimper, but before long I could hear the energy return to her tender voice, and took comfort in her stronger cries.

Our journey to JDRF Children’s Congress began on July 25, 2005.

I didn’t know it at the time, of course. At the time, I was lost in a haze of confusion, fear, and disbelief. I was overwhelmed with information, and doubted my ability to learn everything necessary in order to keep her alive at home.

The horrible low blood sugars started shortly thereafter: random occurrences of passing out, hitting her head, and an hour or more of confused recovery.  She was hardly able to communicate verbally, let alone find the words to tell me when something was wrong. Paralyzed by anxiety, I was on constant guard for the next episode, and secretly wondered if it would be the one that would take her life.

And I knew.

Faced with the imminent loss of our health insurance, my husband began a worldwide search for a position that would provide our family with secure access to benefits. Ultimately, we would leave everything we had worked for behind to move across country as the economy crashed around us. In the interim, I called one insurance company after another in search of a policy to cover the gap, and was denied time and time again, because of her “pre-existing condition”.

And I knew.

We decided to transition to an insulin pump, hoping the precise micro-dosages would stop the terrifying lows. We had to fight with our insurance company to prove it was a medical necessity. We had to fight with the medical supply company to use the infusion set that suited her best. We had to fight with the pharmacy to get the number of test strips we needed.

And I knew.

She started preschool, and they refused to help her in the classroom. Then the school nurse insisted that we put her back on injections. Even after district level meetings involving an advocate, she was sent home with a low blood sugar once, because she identified a problem at 3:22 when the school day ended at 3:20.  My neighbor carried her limp body to my doorstep five minutes later in tears after trying, unsuccessfully, to force her to drink a juice box in the parking lot.

And I knew.

I knew we had to fight back. I knew I needed to equip her with more than her diabetes supplies. I needed to help her find her voice; then use it to advocate for her rights, her health, and her life.

We applied to attend Children’s Congress, and were rejected.

Again.

And again.

All the while, she attended meetings with legislators at our State Capitol, worked hard to raise awareness in her community, and made it a point to welcome newly diagnosed kids into her circle of T1 friends. She has defeated stereotypes, overcome challenges, and takes great pride in her ability to manage her diabetes with confidence.

In the fall of 2012, we applied for Children’s Congress a fourth time and cheers erupted from our home when she opened her invitation of acceptance a few months ago. The road to Children’s Congress has been a steady journey of battles and victories, but one thing is for certain:  She’s just getting started!

adieu

He liked to drive (and wreck) cars.  He had a knack for remembering specific things involving numbers.  He enjoyed cutting wood…with a chainsaw.  In fact, he had his very OWN chainsaw…that his wife may (or may not) have known about before he bought it.  After his father had a stroke, he stepped in to take over the family business:  A bakery.  He went to Germany to apprentice in baking…and if he knew that his raisin danish was your favorite, then he made sure you got all the leftovers.  He made countless wedding cakes for friends and family.  As a small business owner, he always seemed to have position to fill at the same exact time someone in his life may have needed a job.  Building relationships with his children was of paramount importance — even if it meant he hardly got any sleep after working such long days.  Bartering for goods and services in lieu of money was commonplace, and his word could be counted on.  Period.

My favorite story was hearing about how his parents would put him in a playpen near the bakery’s oven, and give him a stale loaf of french bread for a teething biscuit!!

There was also the time he crawled through Meri’s parent’s kitchen window when no one was home and fell asleep on the couch.  You see, he was a hard worker, keeping long hours at the bakery, but he also wanted to spend as much time as possible with Meri.  Breaking and entering,  and then napping on the couch while waiting for the family to get home seemed like the most sensible solution to a lovestruck young man.

There was more than one mention about how many people were there.  The church hadn’t ever seen as many people in the chapel at once, and a dozen or more rows of chairs needed to be added for overflow seating.

Ryan was an amazing man.  It was clear that everyone who knew him, loved him.

But no one loved him more than his devoted wife, Meri.

I won’t lie.  It was emotional…seeing her sitting there, in the front row.  The boys shuffled down, so this one could sit beside her — then a shuffle again, so that one could lean against her, under the comfort of his mother’s embrace — one shuffled to the end and traded places with another — someone moved to sit between his mama and Aunt Lisa — then someone else shuffled over to take up the empty spot.

Meri is the mama.  Even during these most difficult moments — sitting at her beloved husband’s memorial service — she was still the mama, and only her arms could comfort them.

I sat between Manny and Tracy.  We laughed and cried at the stories shared.  You couldn’t help but to smile most of the time, even when your heart ached over the reality of why everyone was there.

I will not soon forget the image of Meri and her boys following Ryan’s casket out of the chapel. This was, perhaps, the most emotional moment for me…it’s hard to describe the stabbing pain in your heart when your eyes meet those of your friend as she fights to put one foot in front of the other, knowing that all of the tomorrows are waiting.

The tomorrows without Ryan.

—————————-

I had been suddenly very emotional the morning that Ryan died. During the night, I got a message from Hallie that her husband had woken from sleep with chest pain…he was having a heart attack, and was whisked off to the cath lab faster than anyone could say “blocked artery”.

After hearing that news, and spending quite a bit of time reflecting on Ryan and Meri…I just needed my husband — wanted my husband — to be close.  It wasn’t until a few hours later that I would learn of Ryan’s passing.  Almost immediately, and without knowing any details surrounding the arrangements, Mr. Rose began looking at travel options.  He just knew.  He knew I had to go.  He said we’d make a road trip if we had to, but there was no way he would let me miss it.  I love him for that.  For understanding how genuine these friendships are.

Tracy called the next day, and it was decided.  We would go together.  In fact, Tracy’s parents, Bev and Lance, generously paid for both of our airline tickets.  They explained that normally they would send a spread of flowers…but they wanted to send Meri her friends instead…

It was a whirlwind trip, and I’m so grateful to April for taking us in.  Her home is absolutely beautiful, and I felt as though I was nestled in a french villa when we woke up the next morning…rolling hills and a pasture of sheep…it was amazing.  She thought of everything — there were gluten-free muffins and cupcakes waiting, along with a fridge stocked with water and a big bowl of fruit.  She was so welcoming and kind and gentle.

The DOC is full of such amazing people.  In addition to Manny, Tracy, April and myself, many others them came from near and far…Sarah, Ivy, Susan, Ashley, and Beth pop into my mind immediately.  April and Susan jumped into action, preparing salads for the luncheon and then staying to help clean up long after the family left to attend a private burial service.  Tracy and I set off to catch our flight back to Phoenix immediately following lunch, but not before hugging these wonderful people first.  What a blessing the DOC is.

Tom Karlya and his family sent a beautiful floral display.  The Diabetes Advocates sent a plant to represent hope.

Thank you, everyone, for your continued prayers of support.
I know Meri could feel the love from all of you.
I know, because I felt it too.
Donations are still being collected in support of Meri and her boys HERE.

I’m not really sure where to start this post.

I’ve written it a million times in my heart, but still have no idea what to say.

I suppose I’ll go back to the beginning…

I started blogging in August of 2008 using a different URL. (It’s since been archived and made private.)  Just about exactly 1 year later, I stumbled upon someone whose friendship would become a very special influence in my life…

At first there were just blog comments.  Then an occasional email.  Facebook was just gaining momentum at that time (or at least for US it was, anyway), and many of the names and faces in the Diabetes Online Community (DOC) were still new to us.  There was a small network of moms blogging about life raising children with diabetes (CWD), and we kept up with each other through our respective online journals.
Eventually we decided to take things to the next level.  Yes, my friends…we started to chat.  As in REAL TIME, REAL LIFE banter.  We picked a date and time, and threw it out there to see if anyone else wanted to join us…
(I blogged about it for D-Blog Day in November 2009…)
We chatted every Sunday evening at 7pm (PST) for…probably about 18 months!  New moms came and others moved on.  But some of us were there just about every. single. week. from that very first chat.
And Meri was one of them.
Whether through blog comments, emails, texts, FB messages, or tweets (okay — not a lot of tweets, but some!)…Meri and I have been in touch with each other almost every single day since the day I found her online three years ago.
You can call it cyber-stalking.  
Or weird.
You can call it nontraditional.
Or say it doesn’t count.
But I call it F R I E N D S H I P.
And, even if our friendship is based online…
It’s very real.
Over the past few years, Meri and I have discovered just how parallel our lives have been — yet distinctly contrasted at the same time.    
When Meri and I met for the first time, we squealed like school girls.  We took pictures.  We cried.  I had the pleasure of sitting at her kitchen table over breakfast while she and Ryan shared their love story.  We talked about each of their son’s individual diabetes diagnosis, and I witnessed them tag-team carb counting while keeping tabs on who had bolused for what.  
Ryan made Sugar and me some gluten-free pancakes…and I remember the way Meri was laughing while trying to tell him to be careful about cross-contamination — she talked, he talked, she talked, he talked…laughter….more laughter….and then he stood tall, put his hands on his hips, and declared like Superman…
“WHO IS THE BAKER HERE?  I am the baker.  You go sit down with your computer and do whatever you guys do while I work in here.  Do not disturb the master!”
His bold statement stopped Meri and I in our tracks before we erupted into laughter and wandered out of the kitchen.
It was a hilariously perfect moment.
And it was very, very REAL.
So….
On February 26, 2012…my heart sunk — or maybe it just stopped beating completely, I’m not sure — when she sent a message to a few people to say that her husband had spent the day at the ER, and six brain tumors had been discovered on his CT scan.  It would appear the melanoma diagnosis from 2009 had resurfaced, and was rearing it’s ugly head…with a vengeance.
I felt so helpless.  So far away.  So afraid for what this could mean for my friend and her family. I posted THIS FB message pleading for someone, anyone, EVERYONE to start praying for my friend, her husband, and their family.
Two days later, she told the world.
In the 187 days that followed, I watched in awe with everyone else as Meri fought through the statistics and the odds to remain hopeful and devoted to her husband through love and faith.  I shared their victories and cried over their struggles.
Throughout his battle, Ryan proved to be a valiant provider for his family.  He loved deeply, and set an example of honor for his sons.  His devotion to Meri was unwavering, steadfast, and endless.    He was a determined fighter and never backed down from fear, even if the journey seemed overwhelming and intimidating.  
On Saturday, Meri and I had a few exchanges.  Her last message sounded upbeat and optimistic.  Ryan had been experiencing some increased muscle weakness over the previous days, but a plan was coming together to help the situation.  Meri was feeling good about getting through the holiday weekend until she could make some phone calls when all the offices re-opened after Labor Day.  Life was coasting along for the Schuhmacher Family.
And then there was Sunday, 9/2/12.
Despite the nature of his diagnosis, Ryan’s death was sudden and unexpected.  His loss will leave a hole in the hearts of everyone who knew and loved him.
A celebration of Ryan’s life will be held on Saturday, 9/8/12.

Visitation from 9:30-10:30
Memorial Ceremony to commence at 10:30

The DOC is welcome.
If you are interested in attending, please email me for additional details.
candyheartsblog@gmail.com
A giving page has been established in support of Meri and her sons.
Your generosity is appreciated HERE.

#FFL12 – Warm Fuzzies Wear Glasses

Have I mentioned Sugar’s recent retinal exam?


The one she had at the 2012 CWD Friends For Life Conference?


You know…the one where I was completely fascinated by this…


Right.  That one.

Well…there was another finding we learned that I sort of glossed over.

Nothing major.  {Easy for *me* to say!}  No diabetes complications, or anything.  

Just that the doctor suspected she would need to be evaluated for glasses.

She heard him say it, and whipped her head around to look at me with panic written all over her face.  I kept a smile, and told her not to worry about it…we’d have her doctor check things out when we got home.  I didn’t want to let it ruin the rest of our trip.

So…fast forward to a few days ago, when she failed the vision screening at her annual well-visit.  And then, the following day, when we got her in for an eye appointment to get a final verdict.

She was none too pleased.

“No one will think I’m pretty.”

“What if someone tries to bully me?”

“What if they make fun of me on the playground because of having a pump AND glasses?”

I tried to tell her that nothing can steal her beauty.  I tried to reassure her that a bully would never be tolerated. I tried to say all the right things…  

“WELL IT’S EASY FOR YOU TO SAY, M  O  M  YOU HAVE A PERFECT PANCREAS AND PERFECT EYES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”

Ouch.

But she was right.

I found myself at a loss for words.  All I could do was shut up and hug her.

I posted something on Facebook — you know — because when a mom doesn’t know what the heck to do with a situation, she turns to her friends to see if they’ve ever dealt with something similar.  I was looking for something encouraging to share with her, words of advice, someone to listen.

By the time we returned home from her appointment a short time later, my Twitter feed and Facebook notifications had exploded.  Soon a personal message from Tom Karlya arrived.  Reassuring comments, pictures of people with their pumps AND glasses…and chatter of Sara, Kim, and Jess collecting pictures for “a little video”.

Well.  

Here.

Because I really can’t find the right words to explain what happened…

 

All I can say is…

Well, I don’t know what to say.  Thank you doesn’t seem to cover it.

Watching it reminded me of what it felt like to be at FFL just a few short weeks ago.  The warm fuzzy feeling of community, friendship, and family.  The sense that everyone around you “gets it”.  Smiling faces, silly faces, video snippets, and ROCKING dance moves {here’s looking at you, Alecia}.  

I want to reach through the computer to hug each person…and each person who sent a pic that wasn’t shown…and each person who wanted to send a pic, but didn’t see the message in time…and each person who even thought they MIGHT have a pic to send…and each person who has watched it and commented somewhere.

Warm fuzzies.

I just want each of you to know how incredibly touched I am.  How touched WE are.

So…here’s a peek of what last night looked like on our end…

I hope you can see the joy.  The unspoken words of sisterhood. 

(Also, if you happen to see a basket of unfolded laundry and shoes scattered about, just ignore them.)

Sugar takes things in quietly, and reflects on them by herself before sharing her feelings about something.  Tiara…well, Tiara is a firecracker who expresses herself with as much drama as possible at any given moment.  Tink is a comedian who finds any reason to laugh FIRST and then allows deeper emotions to emerge.

You may want to keep those personality traits in mind while you watch this.

From the bottom of our Candy Hearts…


Oh…PS…The “Beautiful” video was published on 7/25/12.  Sugar was diagnosed with T1D on 7/25/05.  Seven years of memories, thanks to insulin…and a million more memories to come, thanks to awesome friendships found in the DOC!

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