I wish it was me. Not Samuel.
I wish I could endure all the lab tests. Not Samuel.
I wish I could give up all the food. Not Samuel.
I wish I could go to the doctors. Not Samuel.
I don’t understand.
I don’t understand.
I don’t understand.
I’m stuck in this place of discomfort — frustration and anger and sadness and relief and gratefulness and back to frustration. It’s an awful feeling. Nothing is normal. It’s all new. Strange. And I really don’t like it. At all.
I took Samuel to see his pediatrician today. I found out that Samuel was critically low in almost all of his nutrients. He was starving. Right in front of me. (And to think that for weeks his old docs kept telling me that he was just sick because he was in a big family and exposed to more germs.) His wonderful new pediatrician told me that it would take several months for his intestines to heal and for him to begin to absorb nutrients and gain weight.
But there’s more that’s flagged.
Isn’t Celiac enough? I can’t seem to wrap my brain around the idea that there is more out of balance and in need of diagnosis. More tests. More draws. More doctors. More. More. More.
I want to scream that this is enough.
He’s just 16months old. Little. Innocent. He doesn’t deserve this.
It makes my heart hurt worse than it has ever ever ever hurt my whole life.
So now we test for a whole spectrum of intolerances, and allergies, and other probs. There’s some red blood cell things and on and on. He has to start gaining weight. That’s the real fight now. Which is challenging with intestines that aren’t working correctly. We can do it. We can.
I find it kind of ironic that my blog is called finding joy.
Okay – big sigh and big breath.
I can do this.
I’m grateful for the little beautiful things that remind me of the beauty and joy in life. Like the flowers that the lady at Trader Joe’s gave me last night. Or that a $5 coupon kicked out for Pediasure at Target — coupled with with my $5 giftcard made me walk out of there with it for free. Or the box of Gluten free Chex Mix that came in the mail from General Mills along with 10 eighty-five cent off coupons (I’m on a panel for them. But still, a promo for gluten free?). Or a friend showing up at my door with coffee. Or emails from blogging friends, and friends, and complete strangers encouraging me on this journey.
Or Samuel planting big sloppy kisses on my tear-stained cheeks.
That’s joy.
Even in the midst of a hurting heart.
Finding joy. Finding joy. Finding joy.
It’s there.
I know it.
40 comments
Praying for you and your precious boy.
Rachel,
Please, please, please don’t carry around the thought that he was starving right before you. THIS WAS NOT YOUR NEGLIGENCE OF YOUR CHILD. You DID know that something was wrong and that;s why you persisted. Samuel is so lucky to have a mommy like you! I can’t imagine the hurt that you are feeling right now for your child. I’m praying for your family right now. And you’re right…..joy WILL come out of all this. (((HUGS)))
Much Love,
Nicki
Praying and Hugs for you and Samuel and your family.
You truly can in no way blame yourself for this. IN NO WAY. You are a loving and capable mother who happens to have a child with a condition that needs medical attention.
You and Samuel are in my prayers. Just keep looking for the joy. It is there. This, too, shall pass. ((((Hugs))))
praying for you, and your sweet Samuel.
Praying for you and your sweet boy. May the Lord comfort you and give you peace as you begin this journey. You can do it through Him! Hugs to you.
I truly wish I could bring you some coffee. He can do it…HE can do it and with that so can you. I’m praying for your heavy heart and healing for Samuel. I know that God will open resources for you. I am here for you in prayer.
Praying for your and your beautiful boy.
Blessings,
Amy
Wow.This post brought tears to my eyes. I’m sorry that your family and your little guy are going through this. Head up though, things will turn out. You’ll be in my thoughts.
I am still praying, Rachel. Praying that God will heal Samuel quickly, that he will be home and healthy soon. May God be your comfort and your strength as you, Samuel, and the rest of your family walk this difficult path.
Still here praying for you guys… love all the ways God is showering you will His joy. And, really love the picture of the two of you head to head, looking into each other’s eyes. There is love. There is joy. Bless you…
Smiles,
Christie
(((Rachel))) Praying!
Continuing prayers and hugs on your tough journey.
God Bless you Mrs. Rachel!
it really makes me sad that you have to go through all this. and then i thought about all that you have been through already with todd’s cancer and was reminded that you WILL, too, get through this. God brought you through cancer and i know (and i know you know, too!) He will bring you through this with abundant joy. you’ve already been proven faithful and the Lord is giving you a faith worth wayyyyyy MORE than gold. and that is invaluable. and a beautiful testimony being painted before us all. praying, praying for samuel. i think of you guys all the time. i’m confident, though, that God will bring healing and answers quickly… praying in Jesus’ name!
Oh, I’m hurting you for you right now. I know we don’t know each other but I have friends and family members with celiac and I know how hard it is to deal with. I also know that this season will be over quickly (even if it doesn’t feel that way) and you will learn how to feed Samuel the perfect combo of food to meet his needs.
Praying for you! *hug*
My heart is hurting for you too. I can’t imagine what you are feeling, and yet I had a tiny taste of that feeling about a year ago when our daughter was hospitalized for unexplained fever. When her fever hit 106.3, I thought my life was over. Lukily, it was just a horrible, nasty illness, but those 3 days in the hospital changed my perspective forever. I’ve been following Samuel’s story for awhile, and I am praying that you will find peace in this storm, yet at the same time, it is so important to hear validation that, yes, this is a horrible no good storm. May God lift you up and show you new joys every day. God bless you, sister in Christ.
Rachel—I am so sorry. It is so much easier for mommy to be sick then to see her baby sick. I know that this is difficult for you and Samuel. BUT, God is good and He has put you in good hands. You have good doctors treating him now and small, good things are starting to happen. God is taking care of you and Samuel right now. and what is important, as you said, now you know what is wrong. and now you are getting treatment and help. Peace, blessings, and prayers. Thinking of you daily, Tracey
I know you hear this so much (probably in virtually every comment), but I am truly, truly, truly praying for you guys and sweet little Sammy. Every night when I’m in bed and all alone I go through each person that needs prayer and pray for them. I have made sure to include you two in my prayers as well. 🙂
You little man is such a sweetie. I know sometimes we take things harder than they do. I bet he’s a trooper.
Please try to remember that God knew Samuel would have Celiac. He knows if anything else is wrong. He’s going to take care of all of you! It’s in His power, in His plan.
Try to sleep well.
I’m sorry it’s been so crazy at our house, Rachel, I haven’t had a chance to get on here and tell you I’m praying for your whole family. But please know I am.
Our oldest has spent many, many, many hours and days at children’s hospital in the past 13 years and I know how much it hurts to see your baby hurting. May the Lord give you a tremendous amount of strength and grace for every moment…
It is so hard to understand. I don’t know that we can. But I am so glad that his intenstines will heal. That is good news. Cheryl and I were talking about your son today, Hannah’s post, and what you guys are going through. We are remembering you all prayerfully. God bless.
Oh Rachel, my heart breaks as I read this post. It seems so unfair that our children have to be the ones so sick. I am praying for you and for Samuel that God could bring healing to his body. Praying for wisdom and revelation for the doctors. Praying for strength for you. Remember, the joy of the Lord is your strength. He will manifest His joy in you. He will. The Word of God says that if we seek Him, we will find Him, so seek Him with all of your strength. You may feel like you don’t have much to give, but you do. Give what you have, and He will meet you and pour out His joy. Love you my friend.
Oh! It is so much easier to deal with sickness ourselves it just becomes unbearable when our children suffer right in front of our eyes and there is not much we can do about it.
Pray! I am praying and I see tons of other people are praying too.
He will heal! Quicker than an older child because he is growing so fast.
Praying and praying,
<><
Praise God that you found out what was wrong and are on the right track now. You are a good mommy and it must have been frustrating that the other doctor didn’t hear you. When I look at those pictures I see a precious little one who is so loved. I have often wanted to take away the hurt from my own children, even to have it myself. Unfortunately, we can’t. He will be in my prayers. Momma too.
ooodles and oodles of prayers and thoughts are going up from Australia my dear…keep strong…you are a awesome mum…xxxx
May you all feel Jesus’ close, warm, safe, loving hold. Things will be alright- God can handle it.
With prayers and love,
Joni
he is a blessed little boy that he had a
mommy to FIGHT for him. you fought
the fight and found the diagnosis. the
Lord will give both you and samuel the
grace to address the deficiency.
we will pray for that AND for him to get
FAT!
Rachel, praying for Samuel’s healing. Have you ever heard of NAET? You can google it if you are interested. It may be able to help with the food sensitivities, but not Celiac. From what I understand Celiac is genetic. Does anyone else in the family have it?
Yikes! All of that sounds overwhelming. I’m so glad you have the Lord. I KNOW he will sustain you through this. I am also grateful that you were your child’s advocate and kept pursuing this so that you could get help for him. You are a good mom. The best kind of mom. Please don’t beat yourself up.
When my son, Andrew, had a terrible accident on his bunkbed and literally hung from the railing from 4-8 hours when he was almost two, I thought I was going to die from self-condemnation. I was so sickened that I let him on the top bunk. That I gave into his pleadings to do so. Praise God he turned out fine and his windpipe wasn’t crushed. It was horrific to
think of what could have happened and what I potentially could have had to live with. I was almost paralyzed with guilt. God got me through it and encouraged me greatly. Accidents really do happen.
You didn’t know. You just didn’t know. Now you do and it is going to be OK. You will have information now. You will know what to do for him. God is going to give you such wisdom and he is going to use this disease for his glory if he chooses to not heal him of it. He already has…
I’m believing Him.
Blessings to you and yours!
Praying for quick healing!
Praying for you Mommy!!
SO glad you have a new pediatrician!!
Jenney at thedraystoday.blogspot.com is dealing with the same issues. her son was at the same place your son is when he was finally diagnosed. He is doing MUCH better now! Jenney and I met through blogging but she lives 15 minutes from me. 🙂 she is a great mom and I know she would be a resource to you! praying with you as you continue to find joy!
Praise God that you have a new pediatrician who is taking your concerns seriously and will be able to help Samuel heal! Praying for comfort for you, Rachel, as well as the rest of your family in this difficult time, and praying for little Samuel for continued healing and that the tests reveal any additional areas of concern so that they may be treated quickly.
Oh dear Rachel~ you two have been on my heart so much lately. As I feel this little one kick inside me, so fragile and created by God I think of your little Samuel and pray for his comfort. For big hugs to be surrounding you and encouragement on your journey.
God is so wonderful to send you all those little reminders (friends, Gluten free Chex etc) in the mail that say “I am here for you Rachel” in all the little things as well as the big.
Here’s a big (and I do mean HUGE pregnant) {{{HUG}}} for you.
Have they put him on a diet to help him gain weight yet?
~Cinnamon
Oh how my heart breaks for you and the ordeal you and your precious boy are going through. I was there with my youngest when he was diagnosed with PKU. You will get through this. It makes you realize how precious your children are to you. It could be so much worse. He is so lucky to have you as his mommy. We are taught to trust our doctors with our lives and the lives of our children. I applaud your efforts to stand up and be heard on behalf of your child. You and your family are in my prayers. God bless you.
Praying…..
Oh Rachel, my heart hurts for you. You continue to occupy my prayers.
I know your head is probably spinning with info., but there is a great GLUTEN-FREE cooking blog I follow called “crock pot 365”. Unless otherwise noted, all the recipes are gluten-free. Here is the link:
http://crockpot365.blogspot.com/
Watching our children suffer – it’s the worst thing ever! I hate it with a passion.
It’s love that causes us to hurt and when we consider that, it somehow doesn’t feel quite so bad. If our children have to suffer, at least they are loved in the process.
I pray that Samuel’s little body heals quickly. I pray that you will notice each little improvement so that you will have new hope each day.
I was reading Psalm 29 today – for the 29th day of the month, and it ended with this verse.
“The Lord will give strength unto his people; the Lord will bless his people with peace.”
Just keep turning to him. His strength will carry you.
Love to you and Samuel and the rest of the Martin crew.
Lynnette
Rachel,
I don’t know if what I say helps at all because I ended up losing my child to malabsorption, but I wanted you to know what a friend told me that helped so much when I thought about my child starving. She didn’t starve. She ate. She was full. She was satisfied. But her body didn’t pull the nutrients out of her food. Knowing that helped me, and I just wanted to tell you that as well.
I’m glad you aren’t blaming yourself. I’m glad you are still writing. I too wish I could just take it all away…from you and Samuel. But, then again, this is your walk, the path God has placed YOU on. He’ll provide the lamp for your feet and the everlasting arms to hold you up.
{HUGS}
Rachel, I know I’m not the most faithful of commenters but I did want to comment on this post and let you know that you and your family are in my prayers.