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!

Good-Byes Are Never Easy.

Especially for Tiara.

Daydreaming while mesmerized by Crystal Bowersox.
She’s my very sweet…but very sassy…6 year old, going on 26 year old.  She’s wise beyond her years, pours her heart into everyone she meets, and gets fired up over injustice — whether it’s a situation with her sisters, or hearing about something unfair happening through current events.  She loves shoes, lip gloss, and cartwheels.  She’s as passionate as they come, and ripping her heart away from something or someone she cares about is incredibly painful for her on a very deep level.



When she met Misty’s Middle Little, it didn’t take long before I knew the devastation that waited when the moment came to bid farewell.  Both middle sisters.  Both younger sisters to a T1 older sister.  Both older sisters to a little sister.  


They spoke the same language in their own little world.

The final hugs good-bye.
Fortunately there are ways for these Friends For Life to keep in touch…






PS…Jason and Misty’s husband, Keith, connected instantly as well.  As did Sugar and Misty’s T1.  Oh, and Tink and Misty’s youngest hit it off too.  And…well…I’ve “known” Misty for several years via the old blog-a-roo here…I guess that makes it a win-win for everyone!


Let the good times roll!

#FFL12: Poolside Dex Checks.

I was standing by the pool, waiting for a group I had planned to meet when I saw a cute little family   checking things out.  After being greeted so kindly by several people during my first experience at FFL, and feeling pretty confident this family was in town to attend the conference, I approached them with a smile in hopes that I could help them feel welcome.


Before I could say anything, however, she looked at me and said “You’re Candy Hearts!”


(This is always surprising to me whenever it happens, btw.  I’m honored and humbled to know our family has so many supportive friends out there…so please, please, please {!!!} feel free to say hello anytime, because we really do enjoy meeting you guys!!)


I smiled back, and asked about the two cutie-pie girls with them.  Before I knew it, one of the girls was showing me her pump and pulled out Dexcom…I swear sometimes I think all little girls are the same — she reminded me so much of Sugar just a couple years ago.  


With Dexcom in plain sight, my new friend let out a deep sigh, and mentioned the mixed blessing that comes with all the information a CGM provides.  I completely understood.  The arrows are awesome when deciding how to proceed from one minute to the next, but then there’s a punch in the gut when you see the glaring peaks and valleys.  She pushed a button, and I saw the familiar pattern of rolling hills ……. cruising up ……. and down ……. and up …….


“It’s so bad.  I can’t believe I’m showing you how horrible we are at managing her diabetes.”


“What?  You’re not horrible!  This looks totally normal to me.”


“It does?”


“Yup.”


“But she spikes so high, and sometimes it takes forever to come down, and…”


“Normal.”


She pointed to a spike…


“Normal.”


And another…


“Yup.”


“But people don’t ever post pictures like this!  I never see Dexcom pictures online that look like this.  I feel like I’m letting her down, and can’t figure out how to fix it.”


*DING DING*!!!!

Oh, my friend.  I have been there!!!  I can completely relate to the feeling that everyone else seems to have their act together, except you.  And so, because I want to reassure you that you’re doing a great job, here’s a few pics I dug out to prove that we have days like those too…



And, guess what?  


We aren’t the only ones!!!!



You aren’t alone, my friend.


Pinky promise.


PS (I’ll be adding more links as I find them, so feel free to stop by again!  If you have a related post, please leave a link in the comment section so I can add it!)

Friends For Life 2012: The First Days.

We’ve never flown with all three girls in tow before.  It didn’t help that Sugar was diagnosed with an early ear infection 2 days before our flight or that the washing machine flooded our laundry area – twice – while I was trying to get the vacay laundry done.


But nothing was going to steal our joy.


We were headed to the Children With Diabetes Friends For Life Conference in Orlando, Florida!



The flight was smooth, and the girls did great!  Spice’s flight landed about 10 minutes after ours, and our family felt complete as we set off to enjoy her summer visit by attending this family-oriented T1 focused conference.


There have been a few immediate sightings — Heather, Misty, MeriSara, Kim, KarenKelly, JessKerriScott, Scott Johnson, Lee Ann, Bean’s Mom, GingerTim…and I’m sure there are others, but my brain is moving WAY faster than my fingers!!!!  It’s weird.  To “know” these faces — their stories, their struggles, their victories — and then to casually encounter them in passing as if we’ve known each other for years.  Oh, wait.  It HAS been years.  Years of keeping up with their blogs, Facebook statuses, and (occasionally, for me at least) Twitter updates.  This evening, I was able to sneak a way sans kiddos, and headed to the lobby with my laptop to take advantage of the free wi-fi…as I was sitting here, they started trickling by after dinner…one by one, until I found myself surrounded by a dozen or more friends, most of whom I was meeting for the first time in real life.  


Anyway, Sugar had a retinal eye exam earlier in the day, and it was completely fascinating to me.  The doctor really took his time with her, and we learned that she’ll probably need glasses for a slight case of nearsightedness (this has changed since her eye visit last year.).  He pointed out an area of sun damage on the back of her eye, and explained that long term sun damage can lead to cataracts…don’t worry…he said everything looked normal for her age, but it was a definite reminder of why sunglasses are so important.  Perhaps, however, the most amazing part of her exam was this…


Anyway, in the days to come, I’ll be updating about my very own Animas pump start, making art with the diabetes trash we brought along, and sharing information from the sessions.  Be sure to like the Candy Hearts Facebook page for some exclusive photos you’ll only find there as the rest of this journey unfolds.  



Stay tuned…the fun is just beginning!


Disclaimer:  Our family’s attendance at the Friends For Life Conference in being sponsored by Animas Corporation.  As I’ve previously disclosed, I have a contract with Animas which compensates me to blog/vlog about type 1 diabetes from my perspective, as a parent who is raising a child with type 1 diabetes.  You can find the previous posts I’ve written for Animas HERE.  Animas is not paying for any entertainment excursions, park visits, or mickey mouse ears for all 4 girls.

And Celiac, So There’s That.

May is Celiac Awareness Month!

It seems over the past several weeks, I’ve gotten more emails, Facebook messages, and texts from people inquiring about our experience with celiac than ever before.  I’ve already written out our diagnosis stories, but to kick of Celiac Awareness Month, I’ve decided to do a recap of our gluten-free journey.  I hope this will help to answer many of the questions I’ve been receiving…

Symptoms:

Sugar had celiac symptoms from the time she was an infant, sitting in a high chair picking up Cheerios:

  • Severe, debilitating tummy aches
  • Explosive diarrhea/gas
  • Severe headaches
  • Complaints of leg/joint pain
  • Constant appearance of a bloated tummy
  • Poor pale color, with dark circles under her eyes

This means she had celiac symptoms long before diabetes entered our world.  I brought up my concerns repeatedly during both sick and well visits, only to be told over and over again that everything was “normal”.  In the back of my mind, I cannot help but to wonder if things would be different for Sugar had a doctor taken my concerns seriously, and dug deeper into the symptoms I kept bringing to their attention.

Would a gluten-free diet have stopped the autoimmune cascade that ultimately led to her diabetes diagnosis?

We’ll never know.

And I can’t dwell on it.

At any rate, in the first five years of her life, we had several trips tot he ER for stomach aches and headaches.  She had cat scans of her head and abdomen several times, and aside from 1 bout of sinusitis, nothing else ever came from them.  Over the years, her symptoms waxed and waned, but they were NEVER (EVER) gone completely.

Testing and Diagnosis:

Sugar was tested for celiac during her hospitalization at the time of her Type 1 Diabetes diagnosis in 2005.  Despite obvious symptoms, her lab test came back negative.  Her annual diabetes lab work includes a celiac screening, because studies suggest that 5-10% of people with Type 1 Diabetes will also be affected by celiac.  She was tested 4 more times over the next 3 years, and each time the labs were negative.

When she was 5 years old in 2008, her bloodwork was positive, and an endoscopic biopsy confirmed the diagnosis.

This article explains celiac testing better than I can, and also provides a brief explanation of why Sugar’s lab results may have been been negative for so long:

Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results.

Because celiac is genetic, and it is estimated that there’s a 20% chance of a first degree relative being affected, we decided to have our entire family tested following Sugar’s diagnosis.

Everyone had normal lab work…except me.  My labs also showed anemia, presumed to be caused by long-term, untreated celiac disease.  An endoscopic biopsy also confirmed my diagnosis.  It’s worth noting that I did not have any symptoms…AT ALL.  I would never have known about my own diagnosis if not for Sugar’s.

Follow Up:

One week after eating gluten-free, her symptoms were GONE.  Mind you, these are symptoms she had every day of her life since infancy — G.O.N.E!!!!  Six months after Sugar’s celiac diagnosis, she had a repeat endoscopic biopsy that showed “no evidence of disease”.  She continues to have annual celiac screenings to make sure gluten is not inadvertently getting into her system.  To date, her celiac labs have all remained negative.

As for me, it took about 18 months to get my labs back to normal range.

Celiac and Diabetes:

We did not notice any change in Sugar’s blood sugars pre-GF and post-GF.  Her A1c one month before her gluten-free transition was 7.3% and 2 months afterwards, it was 7.2%.  Her celiac diagnosis really didn’t impact her diabetes management at all.

Interesting Facts:

As taken from the National Foundation For Celiac Awareness:

  • Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.
  • One in 133 Americans have celiac disease.
  • An estimated 3 million Americans across all races, ages and genders suffer from celiac.
  • 95% of celiacs are undiagnosed or misdiagnosed with other conditions. (Source: Fasano A, et al. Arch Intern Med. 2003;163:286-292.)
  • 6-10 years is the average time a person waits to be correctly diagnosed. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center)
  • 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac.
  • Celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
    Learn more about Related Diseases »



    There are NO pharmaceutical cures for celiac disease.
  • 100% gluten-free diet is the only existing treatment for celiac today. Get gluten-free recipes and tips on where to shop »
  • A positive attitude, 100% of the time, helps celiacs create a gluten-free lifestyle for themselves and their affected family members.
  • The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009)
  • Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015. (Source: Packaged Facts, 2011)

    Taken the night before we found out her celiac biopsy was positive.

That’s a (Gluten-Free) Wrap!

I’m a dipper.  My ideal meal includes a variety of dips and sauces accompanied by an array of options to drench in said condiments.  For this reason, I used to LOVE eating wrap sandwiches. I would dip each bite in salsa, the next in BBQ sauce, then mayo, or whatever else all I could find.

But then Sugar and I were diagnosed with Celiac Disease.

And my wrap sandwiches changed.  Sure, I’ve tried some GF wraps that I really like.  But…if I’m honest, it’s easy to warm them for a few seconds too long, resulting in an “almost-cracker”. Many GF wraps don’t seem to fold without cracking, and often have a chewy texture that makes each bite a little harder to rip off than it needs to be.  Not to mention that, at about $5 for 6 wraps, these GF options cost a pretty penny when compared to their non-GF counterparts.

Ah, the gold old days of pliable, affordable, convenient flour tortillas.

And then, one day, my friend told me about these corn tortillas she picked up at Costco.  She told me about them, because they’re labeled as gluten-free and it made her think of our family. She went on to tell me how great tasting they are and how nicely they fold up, just like a flour tortilla.

Pssshhhhyeah.  Obviously she must have been confused.  On their BEST day, corn tortillas don’t fold up nice and easy like a flour tortilla.

Then she let me have a pack to try for myself.

I swear I would not have believed her if I hadn’t experienced it firsthand myself.

These are one of the best gluten-free finds I’ve had in a long time!  So good that I picked up a Costco sized pack of my own.  SIXTY (60) uncooked corn tortillas for around $8.  Sugar and I are SET for taco night, wraps for lunch, Mexican pizza, whatever!

Seriously.

Here…let me show you…

This is what it looks like out of the package.
You throw it in a heated pan for about 30 seconds on each side.
No oil.  No spray.  Just a hot pan.
It even starts to bubble when you cook the second side!
I know you’re busy.
Trust me, you have 1 minute for this.
When I say they are pliable and wrap without cracking, I mean just that.
THEY ARE PLIABLE AND WRAP WITHOUT CRACKING!
Let me show you…
Today I had a turkey-avocado wrap with salsa for dipping (!!!!), and mango on the side….
Now THAT’S a wrap!
PS — No one sent me free tortillas or paid me to tell you about this product…
in case you were wondering.

I’m Not The Same.

She came home with an invitation to a cookie decorating party the other day. No special reason…just a group of friends getting together to make some memories and have fun on a Friday afternoon.  She excitedly handed me the card as we were walking away from her gate, and then scurried ahead to join her pals before skipping off to the park.

I looked around at the other moms, who were also reading the invitation, and couldn’t help but to wonder what they were thinking.  One by one, they smiled before tucking it away without a care in the world.

I saw that invite, and my mind immediately thought about gluten and carbs. About how I’d need to make some gluten free cookie dough since my freezer stash was used up with the holidays.  I thought about shared decorating knives, and the tops of sprinkle bottles that would inevitably touch the glutenous cookies they were embellishing.  I wondered if I’d be able to gauge the pump setting changes I made this week.  After all, it’s not every day, you get to smother a cookie with decorations and call it dinner.  Ugh.  I wondered if this party would wreak havoc on her blood sugars, and if I’d sleep for more than a 3 hour stretch on the night that followed.

I’m not the same.

Across the parking lot, up the little hill, and the park was there. Perfect weather. By the time I made it to the table where she left her backpack, they were already off and running.  I knew she needed to test her blood sugar, but I let it slide.  The other moms huddled, and we chatted about sore throats and runny noses…a fever and antibiotics.  They were talking about plans for the weekend, while I stared past them, watching her play at the far end of the field. She seemed off.  Slower, off balance perhaps?  From where I was sitting, trying to listen to the conversation, I couldn’t tell if there was a problem.  I was distracted by the distance between us.  They looked around and glanced from side to side, making sure their kids were okay while I stared at every step, every move, every sign to determine if I should run her supplies out to the to the field.

I’m not the same.

I decided to walk a few laps around the field.  It would give me a chance to meet up with my girl on the other side, and check her number while passing by. 55.  I knew it.  The other kids started running back to the tables.  Snacks were waiting. We sat on the sidewalk with juice. And Starbursts.  And Nerds.  I retested to see that she was coming up, and then we walked back together. Everyone was scattered.  I watched as the other moms doled out granola bars and handfuls of goldfish without a care in the world about carbs or gluten.  She was feeling better, so we retested to see that she was over 100, calculated the carbs, and bolused to keep her from skyrocketing.

I’m not the same.

We opened the backpacks, and started going through the folders.  The other mothers were talking about their children’s 100% scores, and I noticed that mine had missed 9 math problems.  Math certainly isn’t her favorite subject, but nine is still a lot of errors for her.  Come to think of it, I had no idea how her numbers had been all day.  I wondered what part of the day this assignment was given.  I wondered what her blood sugar was at the time.  I reached for the Ping remote to scroll through the history.  They reached for a cell phone to return a text.

I’m not the same.

Drama runs an extra half hour after school now.  The big show is getting close! They talked about how nice it would be to have an extra 30 minutes for prepping dinner, and helping the other kids with homework.  I wondered if I should decrease her afternoon basals, just to be safe.

I’m not the same.

Before bed, I brushed her hair while she read to me.  Then we talked about school, and who she played with at recess.  We talked about who she sat with at lunch.  She showed me a silly handshake they made up on the playground.

And we talked about the cookie party.  She told me that she got nervous when her friend started passing out the invitations.  She was worried that she wouldn’t get one.  When I asked her why, she replied…

“Because I’m not the same.”

December 19th: Timeline Reflections.

Three years ago, I was in the kitchen making Christmas cookies.  I was up to my elbows in cookie dough, and flour dusted every surface area around me.  The phone rang in the midst of this madness.


It was the news that my daughter’s celiac biopsy was positive.


I remember hanging up, and staring and the floured fingerprints on the phone.


Even though I wasn’t shocked, I felt shocked.

Numb.



We’ve come so far in the three years since we started our gluten-free journey.  At the time I was blogging under a different URL.  That blog has since been made private, but every now and then I like to dig out an old post to share over here.


If you’ve read Candy Hearts for awhile, you already know that I don’t use my children’s real names.  I’m making an exception with this post, because I want to leave the posts exactly as I wrote them in this timeline.


And so, without further ado, welcome to the blur that was the start of our gluten-free journey…but be sure to read to the end.


Because, really, everything is okay.

******November 21, 2008******

Lord, thank You for this beautiful day. Thank You for rescuing our family in the midst of crisis and planting us in AZ — where I can be home to manage Addy, Jason has a secure job during this economic tornado, and our family has access to quality health insurance. Thank You for the abundant blessings You’ve poured down upon us.

It’s been a very difficult week. Managing Adalyne’s diabetes has been extremely challenging and we’ve been left grasping for answers when none can be found. If we ever needed a CGM, now would be the time. I got all the paperwork back from the hospital in today’s mail and just faxed it to the CGM company. And we’re off…

We got the “high blood sugar call” shortly before 9 am this morning. Not sure what to do, we just decided to pick her up and avoid the redundant school drama that we’ve been dealing with all week. She was fine. By lunch, she was a perfect 107. Thank You, Jesus!

But there was a different call this morning too. Addy had her yearly labs drawn on Monday. No news is good news — but we got news today. Addy’s celiac screening test was positive. It wasn’t a little positive. It was nearly 11 times normal — it was VERY positive. Now we’re on the “urgent wait list” for a GI appt at PCH. She’ll need an endoscopy to confirm the diagnosis.

A celiac diagnosis won’t surprise me. She’s had symptoms for YEARS…but her yearly screening has always come back negative, so I’ve tried not to dwell on it. Now it looks like I’ll have to face it. I cannot tell you what an impact this will have on our already topsy turvey life. This is like finding out she has diabetes all over again.

She’ll have to transition to a completely gluten free diet. If we don’t abide by the dietary changes, it’ll wreak havoc on her diabetes, ruin her small intestine, and leave her with a colostomy. She’ll be at high risk for developing GI cancer on top of the myriad of things she’s already at risk for due to diabetes.

I didn’t expect this today. Now I have to figure out where to go from here…

******December 2, 2008******

I’m making chicken tacos tonight. Actually I made the chicken filling in the crock pot yesterday, but realized that we didn’t have any tortillas at the last minute. So we had pancakes last night. Gotta love breakfast for dinner.

This afternoon, I was making cornbread while Addy was working on her homework. After asking what we’re having for dinner, she made an ugly face and announced that she doesn’t like tacos. In our house, we have a rule…if you don’t like what Mom is making for dinner, you get oatmeal. Guess Addy is having oatmeal for dinner. Easy as pie 🙂

Or is it? Then my mind started wandering…what will I do if her endoscopy does actually show that she has celiac? From what I’ve read, oatmeal is out…as are the chicken nuggets she had for lunch and the NutriGrain bar she had for breakfast. Same goes for the cookie she had before starting her homework. Sighing heavily, I looked down and realized the cornbread I was making wouldn’t work either – I had just poured in a cup of white flour.

No birthday cake. No pizza. No “normal” bread products at all. Certain shampoos and body washes even contain gluten. She’ll need her own toaster, set of pans, utensils…cross-contamination can have devastating effects. Will I be making 2 dinners every night? Most of the time I struggle to come up with one. Gluten free food is extremely expensive and we have very little options for places to shop anywhere near us. Looks like we’ll be doing alot of mail-order groceries. I applied for a part-time job back at the bedside this morning. We can’t let her starve to death.

She saw the GI doc today and now we’re waiting for the hospital to call us with her endoscopy appointment. Wait, wait, wait. Hurry up and wait. The doc wasn’t warm and fuzzy at all. Very blunt and to the point. No room for emotion — thank goodness only half my brain was in the room. The other half was trying to keep my 3 little girls from destroying the office. Distraction is a good thing.

How exactly are we going to make life with celiac normal around here — as if already living with diabetes isn’t hard enough??? Oh, my little Addy. You’re only 5 years old and have already faced so much.

But, God has a plan. And, if celiac is part of our plan, we’ll do whatever we have to do. No doubt celiac will introduce us to many new faces that we wouldn’t otherwise meet…faces that might need to hear the Good News of Jesus Christ and it’ll be up to us to carry on His message of love, hope, and peace. There is love, hope, and peace today…and, if her endoscopy is positive, there will be love, hope, and peace in that moment and all the moments that follow too. God does not change.

We’ll be able to figure it out. I have faith in that. Even still, selfishly, I have to admit that I’m praying for Addy’s endoscopy to be negative. And, selfishly, I would ask for all of my blog readers to pray too — and also to get as many people as possible praying for a negative endoscopy result as well.

I know the picture is bleak: She has Type 1 Diabetes (10% of people with T1D will develop celiac — that’s why they screen for it routinely once a year.), she’s had unexplained belly pain and bowel issues since she was 18 months old, and now she has a positive blood test. The odds are against us. But does that mean I should give up hope? Does that mean I shouldn’t lay it at the cross and pray for God to spare her from living the rest of her life with celiac too? As her mother, I have to do whatever I can…so I’m pleading with you to find it in your heart to be vigilant in prayer for her. If you’re faith is on the fence, find it, and hit your knees.

Addy needs your prayers…and, quite frankly, so do I…

******December 19, 2008******

First of all, I’d like to take a moment to give thanks for the many blessings God has bestowed upon our family. He has always provided for our family’s needs and we are extremely grateful for his mercy and grace. We know that God does not change…He has a plan and His love for us does not waiver.

Adalyne has celiac disease. I can’t say that I’m surprised. I’ve known for many years that she has shown symptoms. Every year that passed with a negative celiac test was a relief. But those days are over…her biopsy was positive and now we need to figure out where to go from here.

The implications are huge. I cannot even begin to describe the many, many, many changes that we need to implement around here in order to assure her well being.

I was in the middle of making cookies when the phone rang. Ironically, my kitchen is covered in white flour and cookie dough. Cookies that she’ll never be able to eat again…

******December 20, 2008******

Life is too short. So, we got the news…time to enter the GLUTEN FREE (GF)WORLD! But first…

THURSDAY:

Jason took the day off on Thursday for Addy’s kindergarten musical. Afterwards, we kept Ava (Kaelyn’s BFF) with us and headed to The Good Egg for breakfast. I wouldn’t say it was a GF meal, but we hadn’t gotten the call yet and were still proceeding as normal. That being said, breakfast was very yummy!!!

After breakfast, I decided to embark on the task of CHRISTMAS COOKIES. I had looked through my cookbook the night before and assembled a list of things I’d need…Jason headed to the grocery store while the girls and I headed home.

I figured that, if this was the last time our family would enjoy traditional Christmas cookies, I’d better get with the program. Sooooo….I started with these cute little stocking shaped sugar cookies filled with chocolate chips and pecans. Here’s a picture of what they’re were supposed to look like…

Cute, huh? Yeah, well…mine — not so cute…


If you look at them from the right angle they kind of resemble a “plumbers crack”. Yum. They’re overly crunchy and, quite frankly, I would rather just toss them out. Jason says he likes them….even though they haven’t been touched since I made them — thanks for trying to make me feel better, Honey 🙂

My next batch didn’t turn out very well either. Cute little wreaths that were supposed to “melt in your mouth”. Instead they just seem to dry your mouth out!!! I’m talking DESERT DRY — 120 degrees dry…you get the point. Jason didn’t hold back with the faces and drama to let me know they wouldn’t make the cut.

As they say, the THIRD TIME’S A CHARM!!! My mom used to make these things called “Snowballs” every year. They were my absolute FAV growing up. Must admit that my batch came in a close second to hers 🙂
Thursday evening, we went to look at Christmas lights. We found a really cool house last year…an elderly gentleman puts together this AMAZING display of hand made wood carvings and opens his home for tours. I’m telling you his place is Christmas Headquarters!!! Last year we went while my mom and grandmother were in town….the theme was “Santas“. This year, the theme is “Angels”.




There’s a really funny story about his swimming pool. He raised 4 kids (or was it 6?). Anyway, he kept them in line — especially during the teen years — by making them dig the hole for the backyard pool! He said it took a long time…but they managed to stay out of trouble…and he ended up with a nice backyard when they were all grown and gone 😉


FRIDAY:


Well, Friday, I technically made that 3rd batch of cookies I mentioned earlier — the yummy snowballs. In fact, I was in the middle of making them when the call came in announcing that Addy has celiac disease.
Friday evening, Jason and I went to the Michael W. Smith concert at CCV. This was our first date in quite awhile. Aside from the marriage conference we attended in February, our last date was in November 2007 for our anniversary.

While it was nice to have an evening out, we were both pretty pre-occupied thinking about the new turns life would take now that we have to live with diabetes AND celiac. One of the songs really hit me hard and I couldn’t help it when I started crying. Part of me is so sad. I remember grieving over losing our “normal” life when she was diagnosed with diabetes 3 years ago. It feels like we had finally achieved our new “normal” and now everything is about to change again…

SATURDAY:


Well, I guess the call came just in time. We headed downtown with a HUGE church group to deliver food and clothing to the homeless. What better way to rid ourselves of gluten!! We dug through our pantry and cooked up everything we could find in our freezer…chicken nuggets, chicken patties, pancakes, taquitos… They were pleased to have something aside from a PB sandwich!

This is the 4th time our family has participated and, each time, it makes an incredible impression. This time, however, there was something much bigger that uncovered a difficult reality to accept.

There were children. Never before had we encountered children on the streets. Families walking around trying to collect as much as they could carry — families with children. On the corner, there was a family with 7 kids living in a box. A BOX, PEOPLE!!!! THIS IS THE UNITED STATES OF AMERICA!!!! Our government has bailed out all of these big corporations while families are losing their homes and CHILDREN ARE BEING LEFT TO LIVE ON THE STREETS!!!! I can only imagine how overwhelmed social services must be. It seems that kids are usually intercepted before they get to the street…but, they were everywhere. Little innocent children.

We didn’t come prepared to deliver stuff to kids. There wasn’t much to offer them. I dug through my purse and came up with 2 diapers and some wipes. When I walked them down to the corner, there was a little 10 month old girl — in a pink jacket with a pink barrette in her hair — sitting in A BOX.

And I cried over Addy’s celiac diagnosis? Let me tell you…this experience really put things into perspective. I can’t get that baby girl’s face out of my mind.

After experiencing the sobering reality of children on the streets, we went out to lunch. Addy had a yucky low blood sugar and she needed to get some grub. The Old Spaghetti Factory even had a GF menu 🙂 The girls and I shared our first GF meal. Jason had some too, but there wasn’t enough for all 5 of us, so he got his own plate — of “normal” pasta. Actually, our GF dish was quite tasty. Addy hardly noticed and gobbled it up!

After getting home and letting the girls ride bikes for a bit (Addy is a TWO WHEELING FOOL!!!), we took showers and headed to church. The service was great. Pastor Don talked about the importance of praying for your children and physically laying your hands on them during the prayer. Taking his message to heart, Jason and I had a special prayer with Addy before bed. We talked to her about what was happening and told her about how she’d begin to notice some changes in her food. She took it well…had a few questions…and we assured her that we’d take care of her. With that, she fell asleep in my arms.
I stayed on the couch all night holding her…feeling thankful that we weren’t on a cold corner in a box.

SUNDAY:


Well, today Jason took Addy to breakfast and then grocery shopping. Armed with a list of GF foods, they hit Trader Joe’s and Safeway. It took several hours to read all the labels…they both came home happy and Addy seemed excited to try some new things. Jason said the staff at Trader Joe’s was EXTREMELY helpful…even told him that we could return anything she doesn’t like. With the price of this food, that’s something to be grateful for.

I tidied up the house and finished cleaning out the pantry. I created a GF shelf for her stuff…and I guess that’s that.

Gluten Free Addy has arrived.

Baby Steps

We’re going to a potluck tonight.

I’m bringing some home made gluten-free baked macaroni and cheese.

What?

Oh.

That.

Yeah…umm…let me rephrase:  I’m bringing along a pan of home made gluten-free mac-n-cheese, minus one corner.

You see, I prepared it yesterday so all I would need to do is pop it in the oven before the party starts this evening.

Then I went to pick up the girls from school.

As we were leaving, I noticed a friend of Sugar’s flagging us down, so I pulled over.  Her grandmother walked up to my window and asked if Sugar could come play for the afternoon. Sugar, of course, IMMEDIATELY perked up and began nodding her head while excitedly stomping her feet.

Smile, Wendy.  You’ve been caught off guard, but don’t let your fear show.  Just keep smiling.

“Oh.  Ummm.  Well.  I suppose that would be fine.  Can you follow us back to the house so I can check her blood sugar first?”

“Sure.  And I’ll only be about 20 minutes away, so it’s not too far.”

Is it me, or is the world moving in slow motion?  Did I just agree to let my daughter go to this kind grandmother’s home, whom I’ve only met once before…20 minutes away?  Just keep smiling.  Plaster. the. smile.  And stop ringing your hands like that.


“Ohhhhhhhhhhhhh….kaaaaaaaaaaay.  Yeah.  It will be fine.”

Driving back to the house my mind was racing, my heart was pounding, and I had a pit in my stomach.  I was trying to condense a million things she should know into a quick conversation.  

BG = 115.  8 carbs / no insulin…because.  That’s all.  Just because.

“Soooooo, here’s her bag.  She knows how to use everything.  If she says she’s feeling low, she’ll need to test her blood sugar and drink a juice.  If she’s acting confused or seems too shaky to test, don’t worry about the blood sugar part.  Just help her with the juice, and call me.”

I proceed to write down my phone numbers, and contemplate if I should include her insurance information, along with my social security number.

“Ok.  Got it.  And we’ll be having dinner before she comes home, so don’t worry about feeding her later.”

I need to sit down.  I’m feeling lightheaded.  Did I hear that correct?  Dinner?  As in…a full meal?  Who is going to count those carbs?

“I’ll just make them some macaroni and cheese.  And I have watermelon, and apples, and carrots, and….”

What is she saying?  I’m stuck on “we’ll be having dinner”.  


She seems like a nice grandmother.  What a pleasant lady.  Blue is a great color for her.  How nice of her to stop by.  


I saw a butterfly once that was the blue color of her sweater.


Nothing that starts with a “D” is on my radar.


Diabetes.


Dinner?  What dinner?  

“Um.  Yeah.  So, there’s another thing.”

Reaching into the pantry to grab a gluten-free snack for her bag…


“She also has celiac disease.  It means she can’t eat anything that contains wheat and a few other things.  She won’t be able to have the macaroni you make.  But….  Hmmm….  Well, I just so happen to have this big pan of gluten-free macaroni and cheese already cooked up in my fridge. It’s for a party we’re going to tomorrow, but I’m sure no one will care if a little corner is missing.”

“Okay.  And ribs should be okay, right?  And I have some watermelon and grapes and some other fruit in there too.  I’m so glad she can come play.  L has been asking me to talk to you about it for weeks!  She’ll do great.”

Turning to look my daughter in the eye…

“You’re in charge of diabetes this afternoon.  If you have ANY questions, make sure you call me. Please don’t forget to give your insulin, and I need to know if you’re going to have fruit with your dinner so we can figure out the carbs.  You should have plenty of juice boxes…and don’t try to guess the carbs for anything.  Just call me, and…”

“MOM.”

Takes bag.

“I’ll be fine.”

And then she was gone.

Skipping out to the car, laughing, and smiling with her friend…while I stood in the doorway wondering if I had lost my mind.

A couple hours went by, so I called.

Turns out she was 59 before dinner.

And she was eating fruit, but didn’t know how much.

And she needed a reminder to give herself insulin.

And she was 328 two hours after she got home.

But she had a great time.

Baby steps.

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