A little over three years ago I wrote a letter to myself about raising a little boy with Celiac Disease. (link) I wrote it because I was just coming to grips with my then little under two year old Samuel’s diagnosis with Celiac Disease.
I remember those initial days.
I remember crying in Target over the fact that I couldn’t buy Goldfish Crackers anymore. I remember feeling daunted walking down the aisles looking at what seemed to be a store packed with gluten full items. (That’s my word, by the way, for anything not gluten free – gluten full – and it’s simply stuck.) I remember watching the little kids run up to the bakery for their free cookie and thinking that my Samuel would never ever be able to have that moment of the free cookie in Target.
It would be easy for me to live a life seeing all the things that he cannot ever eat and do and miss out on all the amazing things he can eat. And the fact, that bottom line, for Samuel eating gluten free gives him life.
Let me repeat that.
Eating gluten free gives my four year old son with Celiac Disease life.
Is it easy, sweet mother, who is raising a child gluten free (or with other food restrictions) in a gluten full world? Well, often it is not. Many times it is this holding of breath, this watching to see what happens, this extra planning, this explaining, this justifying of his dietary needs. Do you know what I’ve learned? I’ve learned to be patient. Understanding. And that using my voice to share Samuel’s story is more powerful than sitting in all the things that don’t seem fair.
Truth? Sometimes it doesn’t feel fair to me. Sometimes it makes me sad to have to say no to him for stuff that he wants to eat. Sometimes it makes my momma’s heart ache just a bit to hear him say is this gluten free mama? (My kids call me mama – it’s so sweet to me.)
Then I remember.
I remember that in this world there are so many things that are really not fair and that when one looks at them for too long they can distort and rob us of joy. When Samuel was in the hospital all I wanted for him was to be well. And now, now here he is – thriving – in a gluten full world because he doesn’t eat any of it. And that is a gift.
So mom raising a child this way, I know that there are many times where it feels overwhelming. You read labels like never before. You call food manufacturers and ask what in the world modified food starch or natural flavorings really means. You watch your child carefully and analyze what goes in their body. You make sure your home is safe and void of cross contamination issues.
You are giving life.
Remember that. Remember that when you throw in the box of gluten free Rice Krispies that costs double the normal Rice Krispies. Remember that when you bring the homemade cupcake to birthday parties. Remember that as you make homemade playdough and throw away the gluten full playdough in the kits. Remember that as you ask for the gluten free menu and ask if they have a dedicated fryer and all of that.
Even in the challenges, the ups the downs, the moments where it seems overwhelming, or when the gluten free cookies just flop, in the days when you just wish your little one could eat whatever, in the times when you crave those just out of the oven rolls, in the times when you spend $5 on a box of gluten free cereal, in all of that I want you to remember how eating this way gives health. When Samuel was so critically sick I wanted to know what to fight, what the problem was, and wanted a solution.
Look at him now.
My Samuel is amazing. He’s full of energy. Life. Vitality. Joy.
And he doesn’t eat gluten.
It doesn’t need to taint his life or rob him of joy.
In fact, as I write this I see him, sitting in my living room healthy. And I am so grateful that by removing something from his life that it gives him life.
You can do this. I know it’s hard sometimes.
But keep the perspective. Remember why you’re doing this. And know that you are not alone.
From me, the mom to the now not so little boy with Celiac Disease, who is a perfectly normal four year old, to you.
This is wonderful! I am always so inspired by you 🙂
Oh me, me, me! I cannot wait clear until Mother’s Day for mine! I need the inspiration, like now! It is homework, dinner and bath time. 😉
This was so helpful to me. My son is 2.5 and we just figured out he has a wheat allergy. He talks about eating things that make is belly hurt and make it feel good. It is hard but I think you describe the emotions amazingly!
I can’t believe it’s been 3 whole years already!
Praying in Seattle!
Psalms 130:1-2, 5-7 Out of the depths have I cried unto thee, O LORD. Lord, hear my voice: let thine ears be attentive to the voice of my supplications (5-7) I wait for the LORD, my soul doth wait, and in his word do I hope. My soul waiteth for the Lord more than they that watch for the morning: I say, more than they that watch for the morning. Let Israel hope in the LORD: for with the LORD there is mercy, and with him is plenteous redemption.
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Love love love reading your blog! So inspiring and know that I am not alone in my feelings on those days we think we can’t move forward. You have helped me so much to see the positive and not dwell on the negative. I am cherishing more and more all those little sweet moments. Thank you for all your words of wisdom and inspiration that “we are enough.”
You are writing my story! I am what you just wrote…my son is just two and was diagnosed before he was 2. The Goldfish!!!! I had the same thought! The same with the free cookie and when I opened up a pack of GF ones when he was just learning GF so he wouldn’t feel slighted the checkout lady then asked why the deli didn’t give him his fee one and said he should go back….sigh. Thank you for this post as I am so you right now….
Thank you so much! I was in tears by the end of this. Our son is two and has had major medical problems since he was born. We’ve recently received another diagnosis and removed the eight largest allergens from his diet. For the first time in his life, he’s not hurting! I can totally relate to this – it’s worth every stress, every minute spent reading labels and finding new recipes or substitutions, and every extra dollar spent on special foods just to know that they are alive, healthy, and thriving.
I forget if the whip in that one pic was supposed to be something else or not but oh that look on his face!
Continuing to pray so very hard!
Ephesians 3:14-21 For this cause I bow my knees unto the Father of our Lord Jesus Christ, Of whom the whole family in heaven and earth is named, That he would grant you, according to the riches of his glory, to be strengthened with might by his Spirit in the inner man; That Christ may dwell in your hearts by faith; that ye, being rooted and grounded in love, May be able to comprehend with all saints what is the breadth, and length, and depth, and height; And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God. Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.
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Thank you for taking the time to share this. Right now with our first holiday post celiac disease we are all struggling a bit, there is gluten EVERYWHERE. It has been hard on extended family, too. They have now remarked on how joyful and silly Isaac is but they don’t put it together with how ill he was because he was so great at putting on a happy face for others. So, no we’re not tempted, but there are so many new recipes to learn.
Thank you for sharing and writing this..my son has eczema since 3month old and he’s been allergic to gluten, cassein, dustmite, perfume, cosmetics and so on.. he had teribble eczema up until to the point he scratched til he bleed.. he wakes up in the morning with blood full in his cheek and sleeve.
he is now 1.3 yo and it is hard telling him “no” to babies snack/biscuit.. he can only eat plain porridge with vege.. The only gluten free snack i can find in Malaysia is natural puff shich is made from brown rice.. I feel so happy because at least there is something he can chew as a snack while the other kids eat cookies.. Your blog is inspiring..Thank u.
Wow. THat is a challenge. Bless you as you move forward with this – i’m so thankful that you discovered what he was allergic to and that you can work to keep his diet free from it.
I am not the mom, just a family friend, who has tried to learn to cook and support a celiac family. WOW! Very insightful. Thank you for writing this. I will never see playdough and supermarket cookies the same way… it has made my willingness to support and cook even stronger.
Thanks, Wilda. I appreciate it.
This brought me to tears. My 18-mo-old is allergic to eggs. I have said these words so many times but how quickly we forget to be thankful, right? We’ve only been dealing with this for 5 months and the holidays did completely stress me out. Especially when the kids followed the “don’t feed” rule but my own grandpa kept telling me to give him a little brownie. But I concur – my bitty boy is HEALTHY, HAPPY and… HEARTY. lol. I saw this on my cousin’s fb page. Her daughter does have celiac and I remember how sick she got. Thank you for sharing your story and these magical words reminding me to be thankful for what he can eat.
Oh goodness, I needed this. Our 5th child has celiac disease. He is undiagnosed because I wasn’t willing to put my 12 lb 12 month old back on gluten for a couple months to do the biopsy. I struggle hard with the day-to-day of having a celiac toddler that eats things that hurt him on a regular basis. We are expecting our 7th child in the next week or so.
The struggle of keeping him gluten free, watching what he eats like a hawk, the denying him those free treats is so crushing at times.
I just wanted to say thank you for writing this.
You are welcome. I am sorry to hear about your struggles but am very glad that you have a diagnosis.
Reach out at anytime.
Neat article…I have three, yes three, kids with Celiac as well as myself. The struggle is real