battling celiac disease

by Rachel Marie Martin

Samuel isn’t gaining weight.

It stresses my momma’s heart.

{my cute Samuel with his slightly messy face}

I see this cute little tow-headed blue-eyed, boy, with the cutest meow voice ever, wandering around my home. I watch him eat. Moh, moh, moh (more) — he tells me as his little hands grab morsels of food. He’s smart. Make that brilliant. He’s daring, and busy, and wonderful. He has this mellow and yet incredibly spunky personality that melts the hearts of anyone he meets. I see this blessing, this child overcoming, this child loving life.

Then I see the weight chart for the last several months.

Flat.

I see his percentile — hanging onto the bottom 1% of the chart.  Too low. Too low. Too low.

I compare him to other little ones. He’s small. A head shorter than a toddler just six months older. Not that much bigger than an 8month old. His pants are 9-12month size. People at Target ask me if he’s a year old yet when he’s approaching his 19 month birthday mark.

Sometimes my heart hurts.

I really hate Celiac Disease.

There. I said it. Even though I can manage it, I still don’t have to like it. It really wasn’t welcome in my life. And it certainly wasn’t wanted in Samuel’s life.

It destroyed my Samuel’s intestines. Gluten crushed the villi that we take for granted and probably don’t even think about until they aren’t working. It’s taking months and months and months for those little villi to try to heal and for the nutrients that he eats to finally absorb so that he can gain weight.  Not stay flat. Any trace bit of gluten sets him back for weeks.

I want him to thrive. Completely.

And in that thriving is growing. He’s turned around so much — energy, curiosity, health — he just needs to grow. Gain some weight.

I’m adding more fat and nutrients and power foods to his diet.  I’m fighting.

I’m fighting with all the strength that a mother can muster.

And in fighting comes prayer.

So I will pray.

Every. Single. Day.

Without ceasing.

I want him healed.

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27 comments

Cherie Hill April 14, 2011 - 1:34 pm

Rachel, my heart pours out and my prayers cry out to God for you and Samuel. I pray that God will hold you tight and use each moment to flood your soul with His presence that can comfort you in your darkest hours. Although we are tempted to doubt, Jesus is more than enough. His grace truly is sufficient. He’s giving you a greater revelation of Himself . . . you will be blessed because you seek Him.
Love and prayers,
Cherie

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Kris April 14, 2011 - 1:50 pm

Oh my…a Mama’s heart knows no bounds for the love of our children. I know and understand your love for your son. I sincerely hope that he continues to heal and improve, with each and every day.
Hugs,
Kris

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Kelli April 14, 2011 - 1:57 pm

He hears your prayers…He will give you strength. I will be praying for you and sweet Samuel.

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Krista April 14, 2011 - 1:59 pm

I wish I had the right words, the right thing to do to help. But all I can offer is my thoughts and prayers! They are with your family and your precious Samuel.

Keep up the fight. I know your mama heart will. God will take care of the rest.

May countless blessings be yours 🙂

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Christie Clair April 14, 2011 - 2:15 pm

Hugs and prayers especially this morning for you and Samuel.

Blessings, too.

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Melissa April 14, 2011 - 2:26 pm

May He hold you strong right through all of this…hugs to you!

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carissa @ lowercase letters April 14, 2011 - 2:36 pm

Praying for restoration in Samuel. This isn’t in vain… God is at work amongst you and sees your heartache. May He bring peace like the noon day sun.

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Kelli April 14, 2011 - 2:41 pm

Praying for you and Samuel and believing that GOD WILL HEAL HIM.

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Kait April 14, 2011 - 2:50 pm

Such heart ache for a mother, I can’t even imagine your emotions. I am sorry your sweet boy has to go through this. It is and will make him stronger. He will thrive one day, soon I will pray! <3

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Miss Janet @ HOME April 14, 2011 - 3:01 pm

You are an awesome mommy!! Amen!

I know that this is a very sensitive subject. I am going to remind you of what you already know from God’s Word.

What I am about to tell you, a lot of people would disagree with. I used to be one of those people, but God changed the way that I think. Sometimes I can just feel the Spirit of God flow and I start typing. That time is now.

This is NOT false hope. My God is the Healer not the breaker. Nowhere in the Bible do I see God hurting His children. He heals us, blesses us, sings over us, and loves us beyond comprehension.

Psalm 103:3
He is the one who forgives all your sins, the one who heals all your diseases

What does all mean? That’s right. Look it up. It means all. I am thankful that God forgives all my sins. (Boy am I…) AND He heals all my diseases!

God is not a liar. His Word is true.

Proverbs 18:21
The tongue has the power of life and death,and those who love it will eat its fruit.

Continue to feed your son and do what you know is right.

Now, speak to your son’s body. (Feed your son’s body the “life fruit” from Prov. 18:21. Tell it that it is whole and well in Jesus’ POWERFUL name. I don’t know what kind of healing needs to take place but you do. Thank God in advance for healing your/His son. Praise Him out loud.

People (maybe even yourself) are going to think you are crazy. Hold firm to your faith and expectancy in God. Tell God that you believe what He says in His Word.

I hope you take these words to heart.

Kingdom Blessings and love,

Janet

http://www.homeward4.blogpsot.com

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Karen April 14, 2011 - 3:16 pm

Praying for you and your precious Samuel…

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Joanna April 14, 2011 - 4:41 pm

My heart breaks reading this. I can’t imagine what you are going through. I am praying for you and Samuel!

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Jenny April 14, 2011 - 5:13 pm

I will pray for you as well. I think all of us mommies fight for our kids in some ways, but some battles are just more intense than others. Don’t listen to those dodos in Target, sometimes strangers can make you feel so lousy.

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Courtney K. April 14, 2011 - 5:49 pm

Prayers going out to you and Samuel on a daily basis!! Hugs!!!

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Child of God April 14, 2011 - 6:02 pm

Hi Rachel,

I stand in agreement with what Janet said. Speak health into Samuel’s body. For Jesus paid the price for our health.

I also wanted to say that my niece has celiac. Now I don’t know how long the doctor’s told you it would take for Samuel to heal but she didn’t start to put on weight until about 1 year after removing gluten from her diet and it took 2 years for her intestines to heal. Now she is older than Samuel I think she was 8 or 9 when she was diagnosed so I don’t know if that made a difference in the healing time but I do remember my brother in law saying that as long as she wasn’t loosing weight things were moving in the right direction.

Praying for your sweet boy, remember prayer health into him and claim the promises of our God.

Blessings,
<><

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Masto Mama April 14, 2011 - 6:15 pm

Hi Rachel,
I’m praying for peace–I love the way Carissa said it: “may he bring peace like the noon day sun”. So beautiful…the Lord knows your broken heart and carries it in His hands. I praise Him for the healing that has taken place in Samuel’s body thus far and pray it continues.

I think I may have mentioned this but I don’t completely remember–have you tried those Neocate “Juice boxes”? It’s E028 I believe. Chelsea had malabsorbtion too and she drank those while it was healing and it helped a lot. You can give that to him to drink and give him his regular food with it…it’s on the Neocate website.

Know that I am praying and thinking of you often…may the Lord comfort your heart.

Hugs!

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Jessica April 14, 2011 - 6:23 pm

Praying for you and your precious little boy. <3

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Stephanie April 14, 2011 - 9:36 pm

(Hugs) Rachel! You are an AMAZING mom – keep on LOOKING UP as you fight for your little man. I’m praying!

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Anna Gray April 14, 2011 - 11:26 pm

Praying for sweet Sammy! ^_^

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Lea also known as "CiCi" April 15, 2011 - 12:09 am

What a long and difficult journey this has been for you, Samuel and your entire family. I pray that at the end of this journey you all will be able to look back and see God’s hand at work in ways that you could not see as it was happening. He is faithful and HE is enough! Hugs to you!

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Fiveboys April 15, 2011 - 12:44 am

Praying…

…just a practical weight gain tip. Those smoothies that you showed a few weeks ago – add avacado to those. LOTS of fat and calories and the taste of the smoothie won’t be altered.

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Gwen Toliver April 15, 2011 - 2:40 am

Praying the Lord gives you strength AND that you see amazing healing in little Samuel!

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BARBIE April 15, 2011 - 4:23 am

How my heart hurts for you. I am praying for Samuel, that his body would continue to heal and that he will begin to absorb nutrients that will allow him to gain weight. It’s okay that you hate this disease. I hate it too. Know you are in my thoughts and prayers. Strength and peace to you my friend.

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lmworley416 April 15, 2011 - 5:44 am

Know that I’m always here praying!
Psalms 116:3-5 …I found trouble and sorrow. Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul. Gracious is the LORD, and righteous; yea, our God is merciful.
Prayer Bears
My email address

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myletterstoemily April 15, 2011 - 2:43 pm

and we will fight with you! i pray for samuel
every night.

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Lynnette Kraft April 17, 2011 - 4:24 am

You are doing a great job Rachel! Samuel will get better in time. Just keep doing what you’ve learned to do and keep praying. I don’t blame you. Who wants to have to endure something like that with a child. There we so many days I wished Anna didn’t have her heart problems. We are human… just keep looking for the spiritual in each and every day.
Much love.
Lynnette

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Amy @ Raising Arrows April 18, 2011 - 4:32 am

Rachel,
I ache for you. I’ve been there. (and because of that, I fear I am of very little comfort) Just know I pray with all my heart for you and little Samuel.

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