life, celiac disease, & sam. one year reflections.

One year ago yesterday, Samuel was in the hospital. We didn't know why. He was unsteady and falling over all the time, lethargic, and was losing weight rapidly. He was sick and the doctors had no answers. They told us he was fine.


He wasn't fine. I look back at photos and words from last January and I want to cry. The fear in my words makes me choke and I hate seeing his face when he's in so much pain. He was slowly getting sicker and sicker and he would wake up with rings around his eyes. In the mornings, my mom would weigh him and we would all gather around, hoping that the numbers would go up rather than down.

He was in and out of the hospital for a few weeks. January 2011 was one of the hardest months I've ever gone through. I cried daily and would pray hourly. The uncertainty was crippling, but more so than that, the knowledge that Sam was being dismissed again and again by doctors who claimed he was fine when he was anything but that hit me hard. Some of the things they said make me so sick to my stomach. But my mom pushed and people prayed -- hard -- and God worked.


And that's when we found out he had Celiac Disease.

The rest of 2011 was a whirlwind and a roller coaster in the most literal sense of the word. Food took on a new meaning and our family changed. Slowly, but surely, God worked on our hearts and in our lives in profound ways. Healing came, not only to Samuel's body, but to all of us and our hearts. He blessed us beyond measure throughout that difficult season.

We were filled with a peace surpassing any understanding and a strength that was not our own. It's hard. It's really really really hard. He can never have gluten. Any slight contamination could cause his weakened immune system to go back to square one. Gluten is everywhere -- in the strangest, oddest places. Living gluten-free in a world that's not nearly gluten-free enough is difficult. It's so hard watching him when he knows he can't have something.

Yet, through it all, God's used Samuel's story. He's blessed our family and we've been watching Celiac Disease Awareness grow. In the midst of the hard days, when Sammy was too weak and tired to do anything, and in the days brimming with health and joy, and all the days in between. We're praising God for Sam's life and praying for a greater awareness so that no one else has to go through what Samuel did.


This little boy, who last year, was sick and growing weaker, is now thriving and growing stronger. He's healthy and full of energy. He runs around and has sprouted several inches. He's gaining weight and eating and absorbing nutrients. He's laughing and playing and full of life.

And I am so thankful.

Below are some links my mom compiled about Celiac Disease. They include some posts about Sam and his story and our family's journey on her site. I encourage you to read and share. Thank you so much, friends!

To learn more about Samuel's story with Celiac Disease please click HERE to read his one year post orHERE to browse all past posts. For some initial posts please see these -->> Celiac Disease Journey, Dear Mom of the Little Boy with Celiac Disease What I Learned. For more information regarding Celiac Disease please go to www.celiac.com. For an excellent resource for parents of children with Celiac Disease please visit ROCK {Raising Our Celiac Kids}

dear sam,

I don't know how to write this. You officially turned two on Sunday, and I'm a little overwhelmed by that.

How can you be two already? I remember the day you were born, when we all awaited anxiously for the phone call telling us of your birth. Telling us of you. We didn't know your name until daddy called at 3:16 in the afternoon. Samuel Josiah.

They gave you a good name.

I remember when you were only a few months old, and had a long, funny tuft of hair on your forehead. We were afraid you'd lose all your hair, because you had a little bald spot on the back of your head from rubbing. Like a little monk. You were such a cutie, with your chubby face and little toes.

I remember the day you swallowed the sequin, and how scared I was. You were so little and I was so terrified that we were going to lose you. To have you for such a short time and then to have you no more would have been unbearably hard. But God had big plans for you! I was never more relieved when I heard you were okay. As soon as you got home, we all crowded around you and cuddled and kissed you and cried.

And then in January. The day you went to the hospital. But it had been months before that full of worry. There was something wrong with your stomach. You couldn't eat. You were always sick and tired. There was always pain in your eyes. It hurt my heart to see you not feeling good. And it scared me sick when you went into the hospital. For a second time in your short life, I was afraid we were going to lose you. Not again, I thought.

Those next couple of weeks were the hardest I've ever experienced. Mom and you were gone at the hospital for a couple days, then you came home and were back in and out of that place for several weeks. I tried my best to run the household but it was hard to pretend everything was okay when the little ones asked why you and mom weren't home. I couldn't pretend. But I didn't know. That was the hardest part, the not knowing.

When we found out you had Celiac, Sam, our world was rocked silly and knocked upside down. I was terrified of what it was, terrified of the implications, and terrified for you. There were so many hard changes and difficult choices. It's a long journey that we're still walking along. But you're better now. You're healthy and growing and thriving.

Like I said before, the Lord has big plans for your life, and these trials and hardships are preparing you for something greater. You've been blessed and have blessed our family so much, sweet Sam. I don't know what we would do without you.

I guess what I'm trying to say is, I love you, Samuel, and am so proud of you. I love the way when you laugh your whole body shakes because you're overcome. I love the way your blue eyes smile and your cheeks dimple and you pretend to be shy. I love your roars and your love of john deere and the way you say "me gwooten-fwee!" I love your heart and I love you, sweet Samuel!

And so today, I'm praising God for you. For your life.

You're my absolute favorite Sam ever. Hugs and kisses and so much thankfulness.

Love,
Hannah

please pray for sammy boy

My little brother Sammy is going in for a biopsy today. If you've been around since January, you'll know that the past few months have been a whirlwind of doctor visits, including several hospitalizations, leading up to his diagnosis of Celiac Disease.

Today, Samuel is going to the hospital to get a biopsy done of his intestinal tract to make sure that everything is okay, and that he's healed since the initial diagnosis. (if you'd like to read his story, please click here)

If you all could pray, my entire family and myself would be so grateful. My mom wrote about it on her blog, and some specific prayer requests are...

...calm heart for Samuel. He was nervous and scared yesterday at the doctor's office
...that Samuel can deal with having no food till almost 2pm.
...during the procedure {12noon -1pm}
...steady hand for the surgeon
...that Samuel does not develop croup afterwards
...for kind and caring staff
...that the biopsy sample sites are taken in the right spots {they'll be taken throughout the intestinal tract}
...complete healing
...strength for my mom - specifically when she goes back to the operating room while they put him asleep
...wisdom for the anesthesiologist
...that she can feel the Lord's presence throughout the day.

Thank you, sweet friends.

Loads of love,
Hannah

I will not be silent.

May is Celiac disease awareness month.

This is my brother Sam.

And he has Celiac Disease.

He was diagnosed at 16 mo. and it's completely changed the way I look at so many things. Food. Family. Life.

His system is unable to handle anything with gluten and the amount of everyday, ordinary, items that contain gluten is disheartening. Salami. Salad Dressing. Soy Sauce.

We purchase food that he can eat. We try to eat meals gluten free. But we still eat gluten-filled foods. Sam sees that. He knows that he's not eating what we are. And it bugs him. He cries for it. He knows that something is different with Him and us.

Celiac Disease is not something that can be taken lightly. This is a life-threatening disease that if not treated, can be fatal. Why? Because for an individual with Celiac Disease their intestinal system becomes unable to absorb nutrients from food. Undiagnosed and untreated cases can lead to diabetes, cancers and other auto-immune diseases.

The only cure is to not eat gluten.

Sam can't go out to eat. Even "gluten-free" menu items can be contaminated. If you put a piece of gluten-free meat on the grill where something with gluten was just placed, it is now contaminated. Just that little contact can cause damage and pain to Sam's system.

I support 1 in 133.

This is for Samuel. It's for all those out there who have undiagnosed or unrecognized cases. It's for the people who live daily with this disease called Celiac.

I will not be silent.

This is too important.

This is too near.

Would you consider signing the pledge to support gluten-free food labeling? I can't count how many times we've gone shopping and have come back frustrated at the lack of clarity regarding gluten it may-or-may-not contain. Clarity that we need to have. If the food is contaminated, we need to know.

Thank you, thank you, thank you.
Love,
Hannah


For more information about Celiac Disease, click here.
What is Celiac? (info about what it really is)
Interested in Samuel's story? (and part two -- both on my mom's blog)

please pray

sammy boy this morning

Sam has been diagnosed with Celiac Disease.

Right now, he's very sick and my mom is heading back to Childrens.

I know that she's worn out and Sam even more so. It's so hard.

If you could all pray for him, that would be a huge blessing. He's in so much pain right now -- it hurts to see him like that.

thank you so much -- your prayers mean more than I can even say.

thank you for praying.

( my mom or I will be hopefully updating on her blog :: finding joy )

Asking for prayer

My brother, Samuel, has been almost completely diagnosed with Celiac Disease.

He hasn't been feeling great for months, and finally, when he couldn't walk anymore without falling down, was very lethargic, not eating right, and just not himself, my mom took him in. She called the doctor on Sunday, and they ended up going into the hospital Monday morning. They came home Tuesday evening.

However...our whole family (minus my mom, dad, and Samuel) ended up getting sick (as in, vomiting) from Sunday night till Monday night. I won't go into the details, but everyone got sick twice. I couldn't get off of the couch till late, late Monday night. Everyone's feeling a bit better right now, though understandably shaky and slightly dizzy. Samuel is our main concern.

He might be going into the hospital today, and having surgery tomorrow. We're not sure. If you could all keep him in your prayers, that would be such a huge blessing. I know that if he does have Celiac Disease (which is almost completely positive) that there's going to have to be a huge change in our life, especially with our diet. Samuel can't have gluten. That means if we make a peanut butter sandwich, put the knife in and spread the peanut butter, then put the knife back in the jar once more, he couldn't have that peanut butter because it would have bread crumbs in it, which would have gluten. He can't have rotisserie chicken, because the breading has gluten. And if he does have gluten, he could get very sick, and possibly die.

It's a little freaky, especially thinking about all the food that contains gluten. That's a bit overwhelming. I am so scared for Samuel right now, and I just want him to be okay. It's been a pretty hard past few days. As my mom remarked this morning, "this has been the longest week of my life ever."

If you all could pray for Samuel, and our family, that would be a huge blessing. If you want to read more about it, you can check out my mom's blog. (she's also got a super cute photo of Sam that she snapped in the hospital that will totally melt your heart -- I mean it) Thanks friends.

Much love & many blessings.
--Hannah