Dear Samuel,
I still stare at you in wonder. I still remember.
I look at who you are now — strong, healthy, full of energy — and sometimes I remember you last year. Sick, in pain, not able to walk around or up the stairs. Sometimes I flashback to that old Samuel, the little boy who no one knew what was wrong with but could tell something wasn’t right, as the holidays roll in.
It will be a year in January since you and I sat in the Children’s Hospital Emergency Room with Amy praying and praying and praying that someone pays attention to the little boy who didn’t fight, didn’t cry, didn’t care as they poked and prodded him and put an iv in.
You were fading.
But, now, now you are thriving.
Who would have ever thought that gluten would have this power? And yet, your momma has even more power — she’s got prayer and the Lord — but she’s also got the power to not allow gluten to come near your body. I’ve been recently reminded of the dangers of gluten — one accidental exposure and your symptoms flare right up. Not as bad, mind you, but enough to cause me to remember. And in that place of remembering Samuel, I became once again grateful.
That’s why you’ll catch me looking at you.
Thankful.
Praying.
Grateful.
Humbled.
Remembering.
Samuel, I will keep fighting for you. I will never cease to pray that you are healed from Celiac Disease — it is my prayer every single day. Even now, I hear you sitting at the table talking with Caleb. You point to his bread and tell him, gwoo-ten, gwoo-ten, yucky gwoo-ten. {you still can’t get the l sound of gluten} Then you look at yours and say, gwoo-ten free, me gwoo-ten free.
You are two.
Those interactions, where you know your limits, humble me as a mother, and as a person. I never ever see you throwing a fit because you can’t eat something with gluten. Instead I see you, I hear you, simply tell those around you that it’s got gluten or it’s gluten free. In fact, you hate gluten. I’ve watched you get upset if you even think something has gluten in it.
Samuel, you are my hero.
You embrace where you are, and instead of sitting in the mire of what you can’t have you enjoy everything you can.
Thank you, Samuel, for being so strong, so brave, and such a fighter. This whole letter started because I was feeling bad for you because of Christmas cookies. And I hate that you can’t have some of them — but you, you don’t really care. I think, I know, you are wiser than me sometimes.
I love you like crazy.
~mom
If you like to read more simply click the Celiac Disease tab at the top and you will be linked to all posts dealing with this underdiagnosed and dangerous disease. I am fighting for Celiac Disease Awraeness — especially for children — as undiagnosed Celiac Disease can have devastating consequences and can lead to more auto-immune diseases (Celiac Disease is an auto-immune disease), type1 diabetes, and cancer.
23 comments
I worked for a doctor–neurologist a noted diagnostician, also my friend. Her daughter has Celiac, and for her too it was a struggle to get the correct diagnosis. She took her to specialists with no luck. Finally, although a neurology specialist, she diagnosed it herself. It was a miracle the change in her little girl! She now is on a medication in trials that supplies the missing enzyme. It should be approved within the next couple of years. Gluten is tolerated to a great extent, allowing a child to eat fairly normally.
He’s such a fighter. It’s been a hard journey, but it’s beautiful to see how God has brought your boy back to life. Love you!
You’re such a strong woman. Your son is precious and I with two girls soon to turn two, I look at you with full admiration. As I may never be able to understand the struggle you’ve gone through, I do grasp the heart wrenching ache. So happy they were able to figure it all out so he can live a normal and vivacious life. You rock on and continue to find joy in all you do…sweet lovin’s and prayers to you all!
What a precious letter to a precious child! You are a strong momma, fighting for your son – and he knows that. He knows that you are doing everything you can to make sure that he stays healthy! What an amazing gift you are giving him every day 🙂
Blessings, sweet friend.
Oh…LOVE the way he says gluten free!
what a precious, strong boy!!! My fav line from this post is “your momma has even more power – she’s got prayer and the Lord.” Oh we are so blessed to be able to call on the Father.
what a great momma 🙂 you have some lucky kids. Or rather they’re blessed.
I am so happy to read that he is doing so well. What a cutie pie little boy you have there…precious in every way.
xoxo
What a beautiful post.
so glad that they found what was hurting him and that he is thriving now on his new diet!!
So glad that he was finally diagnosed, and is now stronger and healthy.
It brings back memories of my very sick 3 year old (in 2005). He was airlifted to Children’s Hospital and was then in a coma for a week. Scariest week of our lives.
Hope your week is BLESSED!
Laurel
What an amazing, miraculous testimony of the Lord bringing Samuel back to life. What a fighter he is! Just guessing he gets it from his momma. Just from reading your blog, I know that you have set a wonderful example for your children – and for others – of what it means to fight!
I’m a newer reader to your blog. I can’t tell you how many of your posts I can relate to. My son has severe multiple food allergies (peanuts, tree nuts, eggs, milk, and soy). We too had our rounds of doctors and me the mom knowing we didn’t have an answer yet. Very frustrating. ER doctors that didn’t believe me that FOOD could cause the symptoms my son was showing… and an allergist who told me that would happen!
I too have lamented about what my son cannot eat but those times are short and far between. I thank God that my son is alive and doing well. I thank God for giving me the ability to convert a recipe to something he can eat. I praise Him for all of the goodness that has come from our food allergic son. He has such a joyful spirit and he’s not really bothered by his allergies. It’s usually when “normal” eaters comment how sorry they feel for him that he thinks of his allergies. Be encouraged. It does get easier… but as you know, we can NEVER let our guard down.
You and your family inspire me!!! Your heart just reaches through the screen….and I pray for you, your healing and so thankful for Samule’s growth!
i too have an autimmune desease,it is genetic,brittle bone,form of arthritis.i have ankylosing spondylitis.there is no cure for me.i am so amazed at how strong your little one is.i wish i had his strength and courage.i have always been a fussy eater.i now have learned to eat foods i would never eat before.i have found foods i would never try before i now love.my fav is blueberries.i found out in 2009 but had yrs of symptoms i ignored.when i found out people would say they were praying for a miracle.my responce:thank you but please don’t pray for a mirical for me.that miracle needs to go to a child.i hate seeing so many sick children.when i stumbled apon your blog a few months ago and read about your little one i just wanted to hug him.you and your family are so amazing.lots of gentle hugs go out to all of you
Such a sweet post–it brought tears to my eyes…my son is the same way with things he can’t eat, even at 2. The strength that the Lord infuses in them to deal with what they have blows me away everyday…it humbles me and makes me so thankful. xoxo
Did you see the link for gluten free playdoh I sent you on FB?
Know that you’re always in my thoughts and prayers!
Psalms 27:7-9 Hear, O LORD, when I cry with my voice: have mercy also upon me, and answer me. When thou saidst, Seek ye my face; my heart said unto thee, Thy face, LORD, will I seek. Hide not thy face far from me; put not thy servant away in anger: thou hast been my help; leave me not, neither forsake me, O God of my salvation.
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I was diagnosed with Celiac almost 10 years ago (can’t believe it was that long ago!) and I remember how scary that was for me and the family. And I can see how they still worry about me. I was diagnosed as an adult but I appreciate this mother’s perspective.
I know exactly how you feel. Your letter brings back memories for me. My second child was extremely ill at 9 months old he got much worse before anyone figured it out. My mother of all people suspected Celiac the drs said no we fought to be able to see a GI (military insurance) and finally once we got the approval to go see a GI the Dr suspected Celiac disease within minutes of seeing him. At 18 months old my little boy received a diagnoses of Celiac disease via endoscopy. Soon afterward our 3 yr old girl received the same diagnoses. That was 2 years ago for us. Lots of things have changed. They are healthy. No more failure to thrive. Although my son does have another auto immune disease, asthma. Fight mama fight.
Awwwww.I’m sure you’re son will cherish reading this someday.
Beautiful post!
Do you know of the Elana’s Pantry website? This will be our source for gluten free Christmas cookies this year. Blessings to you and your family!
this makes me cry! your blog is very powerful, enpowering for me as a mother. you are a warrior for your son. God Bless all of you.
My daughter reminds me of your son. She is now 5 1/2 and gluten-free for almost 2 years. She is a trooper and so independent in her eating. She knows what’s ok and what’s not. It’s been hard, expensive, and quite the journey…but has gotten easier. I spent many days crying and wondering how on earth I would survive. Great posts. Thank you. I am new to your blog, but can relate on every level!
Oh sweet mom of Sam, This post got to me, too. The tears burst out when I read that Sam is your hero. I have two children with celiac, doing well, but they are my heros, too.
Preston is 15, diagnosed at 4 years old. Garrison is 11, diagnosed at less than one year. It has been a long road, but I would not change them or myself for anything. Thanks for all you do to encourage other moms. And to celebrate! I just found you today, I will try to read more of your posts in the future. Blessings,
Beth in MT