Category:

Samuel

read my weekend notes

by Rachel Marie Martin June 18, 2012

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.

June 18, 2012 10 comments

how the little boy with celiac disease changed his mother

by Rachel Marie Martin May 10, 2012

written by Rachel Marie Martin

Sometimes I forget, my friends. I forget.

I look at Samuel – healthy Samuel – wandering around our home. His rather large head with crazy blond hair popping up in the back if it’s cut too short, cute blue eyes, and sweet little voice walking through my kitchen. Healthy. As if nothing happened.

Do you think he really has Celiac Disease?

Those words will leave my mouth. It’s kind of a whisper, a soft whisper laced with just a glimmer of crazy hope. I’ll look at my husband and I’ll ask, I’ll implore of him to answer – to remind me – to tell me the truth that deep down I know but I hope that it’s not.

Yes. I know it.

He answers. No explanation, no details, no hemming and hawing, no wondering, no pondering, no doubting. Just a simple, and definitive, yes.

He remembers.

He remembers the little boy who was sick every couple weeks. He remembers how much pain he had – every single day. Not a day would go by where our Samuel wasn’t curled over in a ball – hurting. Our little Samuel didn’t know a life without that bowel pain – he didn’t know that gluten was hurting him – making him get sick, and have no energy, and not absorb food.

Sigh. I remember as well.

Deep down, I know, even though sometimes I’ll just ask. I know that my little boy, my sweet two year old boy, my lovely and strong and awesome and blessing of a boy, has Celiac Disease. It damaged his immune system. We fight and fight and fight and fight. But, my friends, it hurts my mother’s heart deeply. Sometimes being real means admitting that there are things in this world that just plain hurt.

I can’t fix it.

We want to protect them, right? And yet, there are things I can’t physically change. I can’t take away the Celiac Disease. However, I can fight it. I can write about it, and seek out change, and bend on my knees every night in prayer over it. I can bring awareness and buy gluten free and watch over him. But, friends, I can’t fix it. I know you get that – that’s a hard part about being blessed to be called mom.

It still hurts if I really think about it.

I think about all the things that I have to say no to – all the birthday party cupcakes, cookies, licorice, fried chicken, wheat bread, noodles, lucky charms, my grandmother’s wonderful sweet rolls, cool Star Wars playdough sets at Target, kitkat bars, ice cream cones, and more – so much. Even though there are options it’s still limited. I can’t got the clinic without the doctors asking if it’s just a cold or if it’s celiac disease – his medical chart is forever altered. Those things, those are life things, but I’ve learned these last 18 months that they are not defining things.

I don’t define him as having Celiac Disease. He’s my son. A fighter. A normal, extraordinary, sweet, and very busy two year old.

I love that boy. Love him love him love him. Something fierce.

He’s changed my mother’s heart. His struggle has made me celebrate the joys in the everyday. He’s made me realize just how often I absolutely need to be on my knees – praying – thanking, pleading, rejoicing, and really being grateful for all the good – what he can have and for his health. He’s made me a fighter – I watch him fight – I watch him win and I learn to fight. I watch him rarely complain about what he can’t have and instead brush it off and enjoy what he can. His strength and resolve amazes me. He’s two. And his mother {me} has learned from him.

Samuel, you fighter, I love you forever.

May and October are National Celiac Disease Awareness Months – thank you for fighting with me for awareness.

I am forever changed, dear Samuel, forever. So blessed to be your mom.

And so grateful to fight for you and for awareness.

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May 10, 2012 9 comments

motherhood Samuel

window of time

by Rachel Marie Martin March 21, 2012

written by Rachel Marie Martin

I see you.
Outside.
Playing.
Exploring.
Laughing and living life.

It’s a window of time.
A short window of time.
That time when you are little.

Let me be aware.

Let me listen to you.
Let me know when to hold you.
Let me celebrate the little things with you.
Let me be joyful.

Let me push aside the unimportant to spend time with the important.
Let me remember to guard time.

Let me remember to see you in the busy.
Let me learn to shut the computer.
Let me push away the distractions.
Let me get down on your level.
Let me remember to laugh.

Let me have grace.
Yes, grace.
And patience.

With myself.

Let me live intentional.
In this window of time.
Known as motherhood.

Let me celebrate motherhood.
One day
One window of time
After another.

******************

For more encouragement read:
Why Moms are Heroes.
Dear Weary Mom Who Needs a Bit of Encouragement

March 21, 2012 7 comments

Celiac Disease gluten free Samuel

ten {authentic} resources for gluten free living

by Rachel Marie Martin March 20, 2012

written by Rachel Marie Martin

The words I hear so often when I tell people that we eat gluten free is, “that would be so hard. I can’t imagine doing that!” And you know, I had the same thoughts when Samuel was diagnosed with Celiac Disease. I remember wandering through Target, with tears in my eyes, being overwhelmed because the entire store felt off-limits. Full of gluten. None of which my sweet little one could eat.

But, here I am, 15 months later, and I can tell you that living the gluten free life, while it is hard, can still be rewarding, taste good, and can be manageable to the point where instead of being hard it becomes normal. For today’s post I’m listing ten things I’ve discovered about living gluten free and then linking each fact to a post that I’ve written that goes along and compliments it.

1. Find a friend. {I am going to give thanks no matter what}
When Samuel was diagnosed with Celiac Disease I was overwhelmed. I felt like I was alone in this vast world of no gluten eating. My pediatrician, the doctors at the hospital, the GI Doctor, and the nutritionist all told me to connect with a support group. Find a friend. Seek out those who understand this, have been there a bit longer, and reach out to them. And I did. I joined Celiac.com and R.O.C.K. {Raising Our Celiac Kids} and I started blogging about our journey. Through times, I’ve developed a network of go-to people. And, I hope that I can be that type of friend, that resource, for many of you. Celiac moms – you are not alone.

2. Figure out what you can have. The Life Juice {well, actually it’s a smoothie}
Not eating gluten means living in a world where most items are off limits. Instead of focusing on what you can’t eat, instead find some things that you can eat. Find restaurants that you enjoy. Find flours that work as an excellent substitute. Stock your home with treats for those times, those inevitable times, where you wish you could have a gluten treat {I’m thinking the Udi’s Chocolate Muffins.} You would be surprised at how much food is gluten free and what is available.

3. Prepare yourself to talk about gluten free a great deal. what i learned & coming to grips
There is not a week that goes by where I’m not talking about gluten free food, or Celiac Disease, or sharing Samuel’s story. Instead of shying away from this opportunity I’ve embraced this role and pray that my words can bring hope and healing to another in this situation. I’ve also found that by sharing his story that it helps bring awareness. There are many times where I’ll have conversations with random strangers at Costco or Trader Joes about gluten free food/celiac because they’ve overheard me asking someone about the samples given or for the gluten free list.

4. Carry food with you. gf super delicious peanut butter cookie
This is challenging, especially if you have young ones as I do. I absolutely must take food with me for Samuel whereever I go. Most convenience foods have gluten in them as do most fast food places {on Samuel’s well-child visit I checked “never” for how many times a week he has fast food as he absolutely cannot eat any of it.}. I bring snacks for him at church, when we go out, and for shopping trips. I am still looking for a great gluten free substitue for Goldfish crackers. Food manufacturers? Did you hear that? Gluten free goldfish. Please.

5. You will say “no”. gluten free life
That is hard. There are many, many, many times where I have to say “no” because of not eating gluten. Samples at the store, in the church nursery {no snacks}, at playdates and more. In fact, I’ve gotten to the point where I’ll offer to bring the snacks so that Samuel’s snacks are the same as the other kids. It makes it easier, and it eliminates the concern that he will accidentally eat a gluten full goldfish that dropped.

6. No Playdough. letter to my celiac disease fighter
This came as a shock to me. Playdough and the other dough {I think it’s made by Fisher Price} are made with wheat. A child with Celiac Disease {or a gluten/wheat allergy} absolutely cannot play with playdough. They get the wheat on their hands and then it gets in their mouths. This is hard. It means that when Samuel is in a class at church that NO ONE can play with playdough. My church, my friends, they all understand, but it is humbling to make an entire system change like that.

7. You will cry. dear mom of the little boy with celiac disease
I cry often. Many times it’s because I am so grateful for Samuel’s health. But other times, like when I cried in the flour aisle at Christmas, it is because it is hard. Living gluten free takes diligence, work, and creativity. And there are some days where one simply gets worn from never being able to simply grab something off the shelf without careful scrutiny of the ingredients. Most often I shed the tears when I realize that for Samuel he can never cheat, never have that cupcake at a birthday party, and that his whole life will be gluten free. In fact, I already pray that he meets a wonderful spouse who enjoys gluten free cooking and embraces this diet. 🙂

8. Look for substitutes. why a chocolate chip bagel made me cry
Soy Sauce? Has gluten. However, you can purchase gluten free Tamari Sauce. Chicken broth? Has gluten. However, again, you can purchase chicken broth that is gluten free. We’ve found a favorite macaroni {Trader Joes}, corn/rice noodles {they work well in cold pasta dishes as well}, and more as substitutes for what we used to eat. In fact, my menu? It has NOT changed from prior to Samuel’s diagnosis. Instead, I’ve adapted all of our old favorites and made them gluten free. Hmmm….maybe an ebook? What do you think? Should I continue pursuing this?

9. Call companies. Dear Food Manufacturers
I have been on the phone with General Mills, ConAgra, Land of Frost, Kraft, Caribou Coffee {yep, that’s important}, and more asking about their gluten free products. If you don’t know? Call. And, by the way, I make it a point to THANK companies who go the extra mile to clearly label their items gluten free. If I see that label on a product I will buy it because I know it is certified gluten free and safe. Expect to pay more. Gluten free Bisquick costs about $4.59 for a box half the size. I’ve found baking from scratch is cheaper, but even then, expect to pay more for anything flour related. A 4 pound bag of Pamela’s Gluten Free Flour at Whole Foods costs about $17. Yep. So cook wisely. 😉

10. You will find normal. switching perspectives & one year, the celiac disease fight
It will be a new normal, but you will find normal. It is challenging living in a gluten full world and society, but I will tell you that gradually you will discover a new normal for yourself or your child. You’ll find restaurants, foods, how-to-cook, and well, normal. Over the next weeks I’ll be putting together a mini e-book listing some of our favorite foods, tips, and tricks for living gluten free in a very gluten full world. Bottom line? You are not alone. There is an entire community of those with Celiac Disease, gluten allergies, and other food allergies.

Questions? Thoughts? Any ideas? How many of you know about gluten free living? How many of you know someone with Celiac Disease or gluten/wheat allergies? Please share your story. And please share with me my excitement today — Udi’s Gluten Free Foods now has my Udi’s Gluten Free Snickerdoodle Pie Crust Chocolate Pie Recipe on their blog. Cool!

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March 20, 2012 19 comments

Celiac Disease gluten free Samuel

why a chocolate chip bagel made me cry.

by Rachel Marie Martin March 6, 2012

written by Rachel Marie Martin

Yesterday, yesterday on a very cold March morning, I saw my Samuel, for the first time ever, get irritated that he couldn’t eat gluten. There was a bagel sitting on the table, a chocolate chip bagel from Panera bread that we got from church, a bagel left there by Elijah. It didn’t matter that it was a day old bagel or that it was dry. What mattered was that to Samuel it was gluten.

And he cannot eat gluten. Ever.

He saw it sitting there on the table and went to look at it.

It gwooten free, mamma?

I told him no. And that I was really sorry, but that it was gluten bread.

I saw his face. Crushed. Irritated. Annoyed. And then sad.

And then, for a second, mad.

Mad that he couldn’t have the gluten bread. He looked up at me, and told me yucky gwooten, yucky gwooten. And then he came running to me upset. The mad left as quick as it came, and with it just came a bit of sad.

I hate, hate, hate that he cannot eat that day-old chocolate chip gluten bagel that we got free from church. It is not fair and causes my momma heart to hurt for him. Then again, at dinner, while we were eating tacos, Caleb started asking about gluten and if Samuel, in heaven, would be able to eat gluten.

More tears in my eyes.

I get stuck in the whys and the it’s not fair about celiac disease. I get stuck thinking about the times when he’s a teenager and he can’t just grab something in the store, or go through a drive-thru, or order in pizza. And those thoughts? They, honestly, make me weep inside.

I’m his momma. I am supposed to protect him. Guard him. Help him. And sometimes, celiac disease feels like a very helpless position to be put in.

He may not ever get gluten. But, his momma will fight for him. She will talk about celiac disease and gluten free living and bring awareness because she loves him. Like crazy, crazy, crazy love and she would do anything to fight for him kind of love. It’s that love that got me talking to all sorts of people at Blissdom — with Johnson and Johnson, and Con-Agra foods, and Hershey’s Chocolates, and V8, and Abbot Nutritionals, and California Raisins, and more and more about Celiac Disease. It’s that love that pushed her out of her own comfort zone when she shared Samuel’s story with them and asked them to listen. To help.

It wasn’t about numbers, recognition, or stats. It was about love.

And helping other families who deal with Celiac Disease.

Sigh. That sweet, sweet boy of mine. The boy, who was mad because he couldn’t eat a bagel, is worth fighting for. He’s worth writing about Celiac Disease and talking with others about gluten free living. And, my friends, he’s worth sharing with you that, even if you can’t eat that day old chocolate chip gluten filled bagel, your life can still be full of joy and good things.

See that face?