the ups and downs of celiac disease

Sometimes celiac disease makes me cry.

The other day, when we went out for lunch for Chloe's birthday, I saw Samuel come face to face to a world that isn't gluten free. In our home he's sheltered, our home is always gluten free friendly, and Samuel lives with those who understand the importance of gluten free and making his life normal. And then, then at that lunch, Samuel saw a world of gluten. It made him cry, and put his head on the bench, and get a bit mad.He saw the tiramisu that came to our table and didn't want to wait for his gluten free chocolate cake. He saw food that he could never ever touch.

That was a down day.

It's hard to see him deal with the reality of not eating gluten. I know it could be worse, I know it, but it still isn't fair. And that is what I tell him, it's not fair, Samuel, and I'm sorry.

And it's simply not fair. If I could take it away from him would. I would take it so quick - the lab draws, the the compromised immune system, the not playing with playdough, the tiredness, the never eating wheat or barley or oats or rye,  the whole thing. I'd take it without even thinking.

But, I cannot. And that hurts my heart.

So I fight for him. I fight for restaurants to provide gluten free options. I fight for awareness of Celiac Disease and push for quicker diagnosis. I fight to find and create normal. I fight for grocery stores to stock great food. I fight to explain Celiac Disease so it's no longer a mystery. And I fight for his heart.

His heart. So important.

It's so quick to look at an issue and to just dismiss the feelings attached. With Celiac Disease sometimes I find myself saying it's just gluten and trying to shrug off how complicated it truly is to live with that limitation. And then, then I'll sit in the hospital sharing our story and I'll have a nurse tell me how much she respects parents with kids that have to deal with such life changing conditions.

I forget the life part.

And those are the downs.

But, I don't sit there, I just don't. I look at that sweet little face and how much he teaches me. Even after grumbling about not getting dessert he quickly became grateful for the good. I think about his health and how he's thrived in the last two years since he was diagnosed. And that is what I remember. It will be two years very soon since I heard the doctor on the phone tell me that due to the lab panels it looks like it is Celiac Disease and that we need to do a biopsy immediately. I remember staring out the window on that dreary January day with tears running down my face - tears of sadness mixed with tears of relief for finally getting a diagnosis. You see, with knowing that it is Celiac Disease I also learned what to fight and what to do to bring life and health back to my boy.

Celiac Disease may have its downs but my son has taught me the ups.

He's taught me to embrace today and to love the moments and to be grateful for all he can have. He's taught me how to fight and not give up. He's taught me to say thank you and be positive even when things are challenging. He's taught me about finding joy in the little things. He's taught me to embrace the good. He's taught me that it's okay to laugh and to cry and to sometimes do a bit of both. He's taught me about the importance of speaking up and teaching.

Today is an up day. Like most days - and those days really help me through the down days. In fact, most days area just normal, and I don't think of the limitations of Celiac Disease and instead I simply remember how amazing it is to have a boy that is healthy and running around my home.

Samuel is healthy. He's wandering around carrying his stacks of books and smiling.

And for that, I am always grateful. Always.

What questions do you have about Celiac Disease? I am a very proud community leader on the Udi's Gluten Free Boards. This forum is set up to encourage those that are living gluten free or those who are curious about learning gluten free. I write and share a great deal about my experience in raising a child with celiac disease. You'll find fabulous recipes, great links to encouraging sites, and fabulous support. I'd love to have you connect with me over there as well.
Here's the link -> Udi's Gluten Free Community.

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grateful in the middle. where I've been.

Samuel is sleeping, and I was able to connect so I thought I'd give you all an update. For those of you who follow my facebook page you've been updated there. I've included some instagram pics that I've taken. Thanks for the thoughts. ~Rachel

I am writing this from the sixth floor of the Minneapolis Children's Hospital. My son, Samuel, was diagnosed with Influenza A on Monday afternoon and then was sent to Children's Emergency Room due to his extremely high fever and dehydration issues. From there he was admitted and is being taken care of for influenza support. They're concerned he might have rsv as well, and will be testing him for that later today. Part of the issue is that since Samuel has Celiac Disease, which is an autoimmune disease, his immune system is compromised. It has been very taxing on his body fighting this influenza and has been hard for me to see him so weak. Right now the goal is for us to try to get home on Saturday.

That being said I am so grateful for the care he's receiving and for proactive doctors and nurses.

Little did I know several weeks ago when I wrote Why Vacuuming Should Always be Beautiful just how personally that would hit home. My normal is all messed up right now - it's spent in a place I didn't expect I would be in. But, despite it all, I'm trying to be thankful for good moments in the midst and for the time that I am being blessed to spend with Samuel.

Here's a list of some good in the midst of the hard.
Samuel wanting me to hold him.
The abundance of stickers that now adorn his room.
The giant John Deere tractor balloon sitting in the corner.
Lab tests that are rapid.
The iv that is providing fluids constantly for Samuel.
Samuel's spitfire personality.
Samuel's braveness.
Amazing doctors and nurses.
Coffee made for me in the morning .
The abundance of toys gifted to Samuel (please donate toys - they make a difference)
Monkey Preschool App.
The sunrise on the first morning here.

A great salad bar downstairs.
Monitors to check him out and keep him normal.
Friends that have emailed and called and messaged me.
That I thought to bring my computer, chargers, and stuff with me on Monday.
The sun shining outside today.
Movies on demand. Even if it means watching The Lorax multiple times.

And that is that. It is where we are. I had been planning on starting the New Year with an organized bang - and had this post about my one word and my schedule and some intentionality things. But, then, life happened. And part of life is adapting in the midst and living in the middle of things. So for now, my life is spent on the sixth floor, looking east towards St. Paul, watching over my sweet three year old, and being grateful for all the good in the middle.

Blessings (and health) to each of you.

Rachel

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"I not eat gluten." life lessons from a child with celiac disease

It was about three in the afternoon and Samuel was sitting on my lap. We were reading - the Richard Scarry book Things that Go. Page after page we read, searching for the elusive goldbug in the process, laughing at the silly antics of the Pig family. And then, we get to the page where the Pig family visits the farm.

At Grandma Pig's farm, all the farmhands are very busy. They are picking corn, gathering hay, and delivering milk. They are harvesting wheat to be made into bread.

I pause. Just for a moment, glance at Samuel, and then keep reading.

Grandpa is cutting the grass and Grandma is clanking...

That's gluten, Momma.

It was Samuel pointing at the picture of the red grain harvester harvesting wheat.

That's gluten. Yucky. Gluten hurts my tummy.

And sigh. Like a knife in my mother's heart he utters the words that two years ago I never would have thought twice about. I could have avoided reading those lines about harvesting wheat to make bread or I could have changed them that it was going to be gluten free bread. But, I knew I couldn't. I knew that I needed to read it word for word because despite how easy I make Samuel's life there is no hiding that he is forced to live gluten free in a very gluten full world. And that? That stings. Deep.

Especially now. Now, during Christmastime with the abundance of pastries, cookies, pies, and treats. And I know that most of them Samuel can never ever not even a tiny bit of cheating ever have to eat. And, honestly, my friends? I hate that reality for him. I know, I know, it could be worse. But, it's still not a fair reality for him. No matter what. This world? It's not perfect.

Yes, Samuel, that's gluten. 

Me gluten free. Read momma.

And that's it. For me it's a pondering moment about life, and for him it's just an acknowledgement of the fact that there is gluten on the page and that he can't have it. I know I've said it before, but the boy teaches me so much about contentment in life. Again - he focuses on everything he can have and refuses to dwell on what he cannot.

For me to learn from him. For such a time as this.

So we sat there and read. Me with tears brimming my eyes - tears of gratitude for his health and still tears of sadness for all I know he can never have - and him, content to sit in my lap on a Wednesday afternoon and to read.

Celiac Disease is hard. Plain and simple it's hard. I look at labels constantly. I call companies. I watch and watch and watch. But, he is healthy. He is thriving. And he is content.

I am constantly learning from him. He goes to bed at night grateful for all he can have and never complains to me about the many things he cannot eat. He's grateful for the good.

I not eat gluten, Momma.

And he is content.

And I am humbled. Again.

To read a bit more of Samuel's story read this post: One Year: The Celiac Disease Fight.

****

As many of you know I am very honored to be a voice for Celiac Disease and gluten free living. For the last seven months I've worked as a community leader for Udi's Gluten Free and their online community. I've chosen to continue working with them for the next three months - and honestly friends, it is such a gift for me to be able to offer words from our gluten free story on their platform. It gives me space to be a voice - and I do not ever take that for granted. I never imagined two years ago when Samuel was so terribly ill that two years later I would be a voice of hope and encouragement for Celiac Disease. I am humbled. And blessed.

You can find me there --> Udi's Gluten Free Community.
Today I'm asking about the biggest challenge in raising a child with Celiac Disease.

click dear mom letters to read more encouraging letters for moms
Images and original content are sole property of Rachel Martin and may not be used, copied or transmitted without prior written consent.

to samuel, who is now three.

Samuel - you are now three.

{sigh...sometimes I wish time would slow down just a bit}

I look at you, and that sweet but powerful face of yours, and I'm so grateful. I'm so thankful today for you. For the joy that you bring to our home, the laughter, the fun, the seeing of the little things of life, and the living fully. How can you, at three, be so incredibly wise?

Look at you three years ago. So little.

Samuel's Birthday 9/25/09

You love your family.

Like today. You wanted your whole family with as you opened your presents -- you told me let me go get my girls -- as you raced down the stairs to wake up your three big sisters. And, a secret, you're the only one that could have woken those sleepy sisters of yours before 7am with your voice telling everyone it's my birthday, it's my birthday. Your family matters to you little, but now getting big, Samuel. I love that about you.

Samuel's 1st Birthday 9/25/10

Samuel, I am so grateful to be your mother. Between these two pics, birthday one and two, that was one of the hardest years of my life as that was the year we found out about Celiac Disease. I am so thankful that I was able to fight for you - to get that Celiac Disease diagnosis and to continue to fight for you and for Celiac Disease awareness.  I still look back in wonder and with such gratitude at the little boy who emerged - who got a second chance at life when he stopped eating gluten. You inspire me with your courage and your attitude of seeing all you can have in life and not what you can't.

Samuel's 2nd Birthday 9/25/11

And now, this year, this last year you've thrived. You talk and talk and talk. You're learning your letters, and love to read, and of course play outside. You love your superheros {you put your new Captain America shirt on immediately}, and playing light sabers, and you just want to get big. You'll get there, so don't race too fast.

You are simply a gift, a beautiful part of this family, and we all love you dearly.

I'm just blessed to be your mom. So today, today with my words, I celebrate you.

Happy 3rd Birthday Samuel Josiah.

love me.

If you are interested in learning more about gluten free living please connect with me at the Udi's Gluten Free Community. If you're interested in Celiac Disease and Samuel's story click the Celiac Disease tab above to learn more.

seeing what we can have and not what we can't

I know I've written about this lesson from Samuel before, but on those hard days {like my yesterday} it is all too easy for me to focus on everything that isn't going right and to miss all that is going right.

You all know Samuel cannot ever eat gluten because he has Celiac Disease. Gluten {which is found in wheat, barley, rye and sometimes oats} destroys his gut - literally destroys the villi, the tiny hairs, that line his intestinal tract. And if they're destroyed he can't absorb nutrients. At all. So he never ever never not even a tiny taste even one little cheat can have gluten.

This bothers me. I get angry for him or sad or wondering why.

Samuel? He doesn't let it bother him. He can go into a room, a fellowship hall at church filled with breads and pastries from Panera Bread, and ask me it gooten fwee momma? And when I tell him no he will then simply tell me gooten hurt my tummy. And then he's done asking. No complaining, no whining, no irritation.

He sees everything he can have and doesn't focus on things that he can't have.

So yesterday, on my challenging hard day - as I joked on my facebook page I need to be careful about writing about spills and hard days and that as that seems to actually mirror my day - I got stuck in a rut focusing on everything that I couldn't do, didn't have, and wasn't working. We need a new bookcase. There is nothing for dinner. You didn't get anything done {when in fact they had accomplished much}. I had gotten myself stuck in my own perpetual cycle of seeing everything that wasn't working.

Enough.

I need to learn {again} from Samuel. To look at my day and all that worked. Chats with Hannah, a wonderful dinner, an eight year old who understood his All About Spelling Lesson, my almost seven year old who just wanted to do one more math page and ended up finishing nine of them, and my Samuel grateful for the gluten free food that he can eat and never sitting in the complaint of what he can't eat.

So today, today I'm going to try to see the world like Samuel. Grateful. Not comparing. Thankful.

How about you?

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*****

As many of you know I am a community leader for Udi's Gluten Free Foods. It's a fabulous forum where those interested in living gluten free - whether with Celiac Disease or choosing to eliminate gluten come together, ask questions, share recipes, and support each other. Today, I'm asking the question How Do You Remind Yourself to Be Grateful? If you'd like to add your comment to this grateful question feel free to pop over to the wonderful Udi's Gluten Free Community by clicking here. You WILL be blessed there!

please don't drive with your bass loud. and other miscellanies.

Miscellanies. Updates. Truth about music volume in vehicles. And motherhood encouragement.

1.  Two weeks ago Samuel would go to bed easily. We'd say goodnight, tuck him in, pull up his John Deere blanket and leave him in his room, sound asleep, until about 9.5 hours later when he'd awake. Refreshed. Cheerful. Healthy. Until last Tuesday when someone decided to drive down our street at 10:30 at night with their bass loud enough to rattle windows on our home thus waking peaceful Samuel up and causing him to scream in terror.  And yes, now, he has hardly slept at all since.

2. That obnoxiously loud bass driver has probably long forgot about the thrill of going deaf with extra loud bass and subwoofers as he drove down our street on Tuesday. But, me? Nope. Night after night with an awake child makes me remember the insensitive move of driving through a residential neighborhood without concern. The things we do? They make a difference in people's lives. In fact, I want my cheerful, well-rested, not afraid of loud noises coming from cars, Samuel back. *** edited to add: last night was the first night Samuel slept all night long since Tuesday. Thank goodness.

3. My 20 {more} Motherhood Tips article was featured on the Blogher main site - Tips for Motherhood. I'm honored that they decided to feature it over there. If I could add another tip -- it would be -- ha -- teaching my kids to not drive residential streets with loud bass and that extremely large amounts of caffeine are allowed if you are only getting 3-4 hours of sleep a night.

4. Speaking of Blogher -- I was blessed to write, review, and be a part of the Capri Sun Super V review and giveaway -- it's for a $1000 Visa Giftcard {Seriously -that would be a blessing!}. My kids loved those juice and veggie {yes, veggie} pouches. Post will be live at 8am CT so make sure to enter! And listen to my Brennan's super fun vlog about the veggies in the drinks.

5. You know, I should have just sent my daughter Hannah and sister Abby out to deal with that driver. After all they make a really good Thor and Captain America. ;) {pic below is a walmart instagram in the aisles exclusive}

6. I've been working on my ebook and another 10 Days of Intentional Mothering Series. Are there any topics you're interested in? If you haven't seen my first 10 Days Series click -- Day One:Awake.

7. I'm also working on finalizing my homeschool plans for this year. It's crazy picking out curriculum for kids from toddlerhood to my {gasp} junior in highschool. It truly does just seem like that it was just yesterday that I was picking out {and over buying} my Hannah's kindergarten curriculum. And, sigh, now we're onto all this advanced stuff that seemed so so so far away. Embrace today. They truly do grow. Very fast.

8. I've had some requests to print out pictures and articles to be used for MOPS groups, Bible Studies, and more. Please feel free {just please drop me a note a let me know}. And, grin, I speak as well....so if you're ever interested I'd love to send you my speaker bio and topics. Which include things like - Living a "Loving the Little Things" Life, Joyful Motherhood, and Intentional Motherhood in a Busy World.

9. Today is my Elijah Nathaniel's 5th Birthday. That precocious boy {which inspired a yet unpublished Dear Mom of a Spirited Child letter} is certainly a dear to me. He's funny, loving, and just an amazing and awesome addition to our family. I'm so blessed by him and am just completely grateful to be his mother. Look at that face - that angelic I never get into anything but really do face. I love him.

10. Motherhood takes patience. And energy. And lots of coffee. And good friends to call to listen to you. And remembering that an almost three year old who doesn't sleep at night anymore will someday grow big. And lots of love.

Remember that this Monday.

And please, please, please....always keep your bass down. :)

Linking with my lovely friend {who was also featured in Blogher -- read Being a Mom and Starting a Side-Gig} Carissa over at lowercase letters.

why going outside matters more than the dishes

I think Samuel thinks about going outside from the moment his blond head hits his Backyardigan pillow till the moment he wakes up and tosses his much-loved green and yellow John Deere blanket aside and wanders down the stairs for his gluten free breakfast.

Go outside, momma?

He'll start asking before breakfast - it doesn't matter if it's raining or sunny or 97 degrees. He sees that world of wonder beckoning to him and watches his older brothers run in and out as the day progresses and he just wants his time in that backyard of green.

Go outside, momma?

All morning I made excuses to not go outside. I've got dishes, Samuel, I would say. And then laundry, sweeping, and tidying. Truth is? Sigh. I didn't really want to go outside yet. But, that little face did.

Go outside, momma?

Okay, Samuel. I finally relented and pushed my schedule filled with lots of things to do but none of them urgent in the moment away. As I opened the heavy sliding door to the much in need of new stain deck, my little healthy boy ran past my and scurried down the stairs. He ran from thing to thing to thing - with simple joy on his face.

I found a spot in the grass that needed mowing but I chose to ignore in this moment and watched.

I watched a little boy running in the backyard from toy to toy and back to the fence and to the swingset and again. Then he stopped, and looked at me, and ran over to my always in bloom Black-eyed Susans growing next to the deck. His two little hands grabbed the stem and plucked one of those golden flowers with the black button center out.

For you, momma.

Dishes. And to think that I'd been telling him no for hours and using the dishes as an excuse to not go outside until I was totally ready. He doesn't care about those dishes being done on time. He just wanted to go outside, to play, to run -- and then, when he was there he simply thanked me. There was no complaining about me taking too long, -- he just thanked.

Oh, those children, they are constantly teaching me.

Let go of the dishes.
Run in the sun.
Pick the flowers versus leaving them.
Don't give up.
Thank those you love.
Have patience.
Good things come to those who wait.
Embrace today.

Go outside, momma?

In 5 months, when the world is blanketed in white, I will be thinking of the days when we could just freely walk outside and wishing that I would have done more of it. So now, now I'm going to work to answer yes, we'll go outside just a little more often.

After all, look at what Samuel taught me.

Little things matter.

More.

*****

thanks so much for the encouraging words and for sharing my post 7 ways to cultivate simple in a busy world from yesterday. It's a blessing to know that I'm not alone in the quest for stillness in a crazy fast world of information.

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cherish today

I hate this.

Those are the words that kept spinning in my head as I held Samuel tight as two nurses worked to get his annual Celiac lab draw. My sweet boy, who minutes ago was asking for a John Deere sticker, was now so incredibly sad and crying and telling them to be all done.

I hate this. It's not fair.

I just wanted to tell them to stop, to pick up my sweet little one, and to race out of that Pediatric GI Clinic as fast as I could and to never ever ever have to bring him back for all those pokes and prods. And yet, I knew I could not. I knew I had to hold him and to keep him tight and to be the one to tell him that I loved him in the midst of this really awful hard thing. I knew that his health depends on these hard mothering moments.

Those are the moments that break at the mother's heart.

When they're born we picture the good - the first steps, smiles, and birthdays. We see bike rides around the block, picnics in the park, and bubbles blown in the backyard. Lovely, everyday, beautiful Hallmark worthy moments.

Yet, being a mother often means that we're going to be the ones there in the really hard moments of life. The moments where I get an exhausted from crying little boy strapped safely in the carseat and give him an extra hug and then proceed to sit in the front and put my own head in my hands. When I sit there with tears in my own eyes outside a clinic, staring out the window as the sun streams in, and wish that none of this had to happen. Those are the hard moments in motherhood that make us strong and often jolt our perspective back into focus.

{There are mothers that have this level of strength every single day. You amaze me with your grace.}

And so, now, on a Tuesday morning, as I sit in my half freshly painted living room, I've thought about my day and my words that I write. And it comes down to this: cherish today.

Cherish today.

When those littles wake up and run up to you, knocking your coffee a bit, and they want and want and want, take a moment to step back and simply cherish it. Pull off the tired perspecive and look at your life through a cherish today perspective. Grab that 2 Minute Grateful List from yesterday and fill it out again today.

We need those cherish today moments to build us up for those days that exhaust.

Cherish today.

Even if life isn't perfect, and the house is a bit messy, and you're laundry is piled up high. Cherish it. The normal, everyday moments, are in fact, the beautiful moments of life that one wishes for during the hard moments. I remember just wanting normal, and yet in the midst of normal I forget how beautiful normal can be. And so, that is what I'm writing about today. Because I forgot. Again. I got so wrapped up in my own to-do list that I forgot the gift of normal in today.

Cherish today. Cherish normal.

It truly is a gift.

remember to grab your free 2Minute Grateful List
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Celiac Disease - 10 Things I've Learned

I am frequently asked questions about Celiac Disease and how we got Samuel's diagnosis and what the biggest challenges are in living with Celiac Disease. Here are the answers to many of those questions {with cute full of life pics of Samuel} - and remember I'm not a doctor, but rather a mom, an advocate sharing her experience so please seek out medical help if needed. The biggest thing? You will find a new normal.

1. The biggest challenge in Celiac Disease was getting the diagnosis. It took months and months for doctors to figure out what was wrong with Samuel and even then the Celiac Disease test was just thrown on their lab list after I asked them to include it. It should NOT be this difficult to get a diagnosis. The initial screening is a lab test. Samuel was lucky - he was diagnosed fairly quickly {within six months of me constantly going in questioning symptoms}. However, he was crashing rapidly and ended up in the hospital twice due to the slow pace of diagnosis.

2. You cannot cheat. Samuel can never have gluten. Ever. Any bit of gluten damages the intestinal villi and starts the cycle of disease again. Celiac Disease is an auto immune disease not simply a gluten allergy. Untreated Celiac Disease can lead to another list of health problems including things like diabetes and intestinal lymphoma. It is important to distinguish between Celiac Disease and a wheat or gluten allergy.

3. When Celiac Disease is left undiagnosed it compromises the immune system. Samuel was chronically ill prior to his diagnosis {via a Celiac Panel and endoscopy} and since being diagnosed has not had the chronic illness that had been a constant in his life. In fact, prior to diagnosis he was sick every 3 weeks and now it has been 4 months since he's even had a cold. Only difference? No gluten.

4. Celiac Disease can show up at any time. If you have a family member with Celiac Disease your risk of having the disease shifts to around 1 in 20. Make sure to not eliminate gluten before your have a Celiac Panel as you must have gluten in your system in order for the panel/lab test to be accurate.

5. Gluten Free Food can taste great. When our family first started eating family meals gluten free the options felt limited, but now, 18 months later, there are few dishes that we used to enjoy that we don't enjoy now. It takes a bit more time, and yet, it's very doable. Remember how I said the biggest challenge was getting the diagnosis? Well, often people will ask if it's eating gluten free. But, honestly, even though it's challenging I remember that eating gluten free equals life for Samuel. And that? Changes perspective. Quickly.

6. Playdough should not be played with by individuals with Celiac Disease. Playdough contains wheat - wheat gets on hands and then inevitably into the mouth. Also look for bath products {and cosmetics for women} that don't contain gluten.

7. Eating gluten free is more expensive - if you rely on packaged foods. If you eat a great deal of fruits and veggies it is not nearly as expensive. Find products you love and stick with them. I find a great deal of our favorites at Costco, we love Udi's bread, and I order my flour via Amazon {Gluten Free Mama, Mama's Almond Blend Flour, All Purpose Flour, 32-Ounce Pouches (Pack of 2) - that's our favorite} and I've learned to stock up on gluten free items that have a deep discount at our local grocery store.

8. Food is not always clearly labeled. Be prepared to contact food manufacturers and restaurants. Contact is good - it brings awareness. I've spent a good time talking to various companies and am grateful to chat with them about the importance of labeling, of providing gluten free food, and then I thank them for their time. Grin, if you ever see me in the grocery store, on my phone, while reading labels chances are I'm talking to a company about their products. In fact, just last week it was to verify that a certain spice blend was gluten free {thanks McCormick}.

9. Keep copies of your labs and medical information. Since Celiac Disease can compromise the immune system I know that when Samuel is sick that the doctors very quickly are trying to assess if it's Celiac Disease related or just a cold/sick. I keep a copy of all of his labs {it's a thick folder} with me so that I can simply hand over the labs so they have a baseline. This has helped him avoid lab draws twice -- this is important when you're two. :)

10. Find support. I've found great support - from his pediatrician, to my family {that pic below is of my Dad, my sweet Dad who has prayed and helped so much, with my Samuel}, to my friends, to online groups {celiac.com}, to online friends, blogs, and to the forum at Udi's Gluten Free {where I'm a leader}. It truly helps to chat with others who are in a similar situation and who can offer advice, agree with the challenges, and can give support.  Part of my goal is to be a voice of encouragement and support in the gluten free world.

That's it - ten things I've learned in the past 18 months. Do you have any other gluten free questions?

One last thing - as part of be blessed to be a community leader for Udi's Gluten Free I get the honor of participating in monthly chats. This month I'll be at two including one that is on Monday, July 30 at 8pm ET. Here's the link Udi's Gluten Free Live Chat Link, but don't worry, I'll remind you as well. And if you follow my facebook page I'll put the notice up there right before it begins. The topic this time? Food Sensitivities versus Gluten Intolerance and Celiac Disease and the various testing needed.

please note: this post contains an affiliate link to amazon. for more info please read my disclosure statement. thank you.

i not eat gooten

Those were the words of Samuel this morning.

He was wandering around the living room, carrying his lego guy and a board book with the letter c on the cover, and came up to me with his getting too long blond hair and told me i not eat gooten. Translated? I not eat gluten. I'm not sure what brought it up, really, but honestly, there isn't a day where the subject of gluten free doesn't come up.  Jut this morning we were reading that c boardbook, and on a page was a picture of a cupcake and Samuel points to it and tells me it's gluten free.

I wonder how much he thinks about gluten free.

He certainly strives to make sure that his world is balanced and fair and that his gluten free reality doesn't feel limiting. Even though I know that it actually is limiting - birthday cakes, church nursery and goldfish, playdough, sunscreen, potlucks, and more. Each of those things would be cause for me to pause, investigate, and devise a solution for Samuel. Bring his own cake, no nursery or I bring all the snacks, buy gluten free playdough and always tell nursery/preschool/friends no playdough, find gluten free sunscreen, bring food for potlucks -- you see -- it affects everyday facets of his life.

I not eat gooten.

That's my boy. The one I love so dearly - the one I fight for and share my heart about Celiac Disease and living gluten free. And that's why, once again, I am so blessed to be able to devote time to sharing our story, offering advice, gleaning advice, finding amazing recipes, finding support, and developing community on the Udi's Gluten Free Board.  So today I'm asking you what you're interested in learning more about - diagnosis? living everyday gluten free? some of our favorite gluten free resources? protecting Samuel's gluten free heart? - so that I can begin to answer those questions and help and encourage. And, within the next several weeks I'm going to set up a live chat on the Udi's site and I'd love to use that time to answer those questions even further.

Why do I do this? Why is this my heart? It is because of that i not eat gooten boy that is playing cars in his room and gets his hands blue with paint and my desire for his life to be as normal as possible. And that includes me fighting for awareness, sharing our story, and being encouraging to others walking this gluten free journey as well. Thanks for walking with us.

Here's my latest forum topic and question on the Udi's Gluten Free Board {not sure why it's pulling my words twice - just ignore that}. Within the last week I've chatted about gluten free sunscreen, favorite foods, and more. I'd love to have you join the chat with me over there. And please do let me know of live chat options. Thank you! Feel free to answer the chat prompt about gluten free birthdays {or other food allergies how you handle birthdays} in the prompt box or in the comment section.

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read my weekend notes

Weekend notes.

- Vacation -
In less than two weeks our family will be leaving for our annual week vacation to the lake with my extended family. It's a joyous time of family, fishing, swimming, playing games, doing nothing, and eating. I've gone every year since I was either eight or nine - this is a huge deal and is a tremendous defining moment of our summers. My father is proposing a media free week up there. I'm mulling that over. I mean look at this view - high def naturally.

Any vacation plans for you?

- Elijah -
He's doing better since his boy meets captain's drawer incident. Besides having quite the shiner he's been a bit more tired - so we're encouraging that four year old of ours to rest as much as a four year old will. Which, in case you forget, is almost impossible. I'm still watching him carefully to make sure that he mends up and gets back to his incredibly precocious state.

- Momma's Heart -
Somedays the reality of  Samuel never ever eating for gluten hurts my momma's heart. Last night, after coming home from our sweet neighbor Emma's baptism I stopped to grab Grace a treat. One fry remained on the table. One fry with just a bit of wheat starch in it. Gluten. And Samuel came downstairs, holding that lone fry and looked and big sister Hannah. This gluten free, Hannah? And she told me she hated telling him no. As much as I try to make his world gluten free the reality is that he lives in a very gluten full world and will have many of those no moments - birthday cakes, food at the coffee shop, potlucks and not being able to try - and that is hard.

I know in the scheme of life that there are greater sorrows and harder trials. I know to be grateful for all that he can eat. But, sometimes, my friends, I will tell you that it simply hurts my momma's heart. Or his sister Hannah's heart. It is not fair. Short and sweet.

But, despite it not being fair I will not sit in it. I will rejoice for all he can have and only buy him fries that are gluten free. And I honestly will pray that he continues to retain his amazing strength -- he is two years old and knows to ask if something is gluten free or not and then he is content when he hears the answer. Was he a bit sad? yes. But did he sit in it? No. I don't know if I could be that strong.

That boy is amazing.

- BEECH -
For the last several months I have been working behind the scenes on something amazing. That awesome thing? The BEECH Retreat - Blogging to Encourage and Equip Christian Homeschoolers that will be taking place next year in beautiful South Florida at the South Seas Resort on Captiva Island. Yes, island. Yes, Florida. In the winter. You simply must check it out - and be prepared to be blown away by the absolute beauty of this setting. :)

- Sponsors -
And some closing housekeeping. If you are interested in sponsoring/advertising on finding joy I am now working on wrapping up sponsors for July and the third quarter {can you believe that? I had to check twice}. I am truly grateful for each sponsor - thank you.

- Recap -
Go to the BEECH site and do not pass go.
Share with me your favorite vacation destination.
Tell me iced or hot coffee. {random,  I know}
Sometimes auto-publish is not reliable. Like today.
Have you joined Finding Joy on Facebook? If not, today, when it's 13 from 2000 would be a great day. ;)
Gluten free pizza with pesto, roasted veggies, and fresh mozzarella is amazing. {just had to add this}

And thank you for praying for Elijah.

- Linking -
With my lovely friend, Carissa. Who I am so delighted to call my friend. Blessings, indeed.