The following note, which was sent to me privately and posted with the Mom’s permission, needs no introduction. Please just read it and share it. This is the side of celiac disease the public eye does not see. And we need them to see it.
Hi Gluten Dude. I write my 8 year old daughter love notes to an email account I set up for her as a baby. Over the last year and a half thru Hell – diagnosing and treating her celiac – I have penned many a letter. When she’s older, perhaps a mother herself, I will give her access. This last month has been filled with excruciating pain and frustration for her.
This is last night’s letter:
Sometimes at night, after you’ve gone to sleep, I crawl into bed with you and wrap you in my arms. It is only when you are fast asleep, that I can take off my armor, put away my cape, and put down my guard.
It is then, that my tears find yours on the pillow.
When you look at me, with eyes filled with terror, exclaiming, “Mommy! I’m scared about what’s happening in my body!” and melt into my arms, I too am scared. I’m horrified.
But I cannot tell you that. I need to be strong for you. In my heart though, I’m crying right along beside you. Every single tear.
It’s only after you’ve cried yourself to sleep in pain, that I can cry with you.
I put my hand upon your swollen belly, as if I truly had Super Mommy Powers, and that I can magically draw out what ails you. I envision your pain, passing thru my hand, up my arm, and into my own belly. I can take it. Just give it to me. Oh, how I beg, God, just give it to me. Please. I’ll do anything. Please.
I’m sad. I’m mad. I’m pissed off. I’m scared. I’m helpless.
I am all those things, and more. Most importantly, I am your mother. I will never give up on you. I will fight every last battle, right along your side. You might be small, you might be scared, but you are strong. Whatever this latest challenge, you will be OK. You will. There are no other alternatives.
I wish I had the answers to your questions. I wish I could wipe it all away. I wish I could love you all better. If love was the answer, you’d be healed, for my love for you is limitless, and eternal.
You are my sweetest angel, and I don’t know why someone as kind hearted and loving as you, is faced with such challenges. You’re too young to struggle so much. Now I truly grasp the concept of “not fair”.
But what you are not…is alone. You might feel that no one understands what you’re going through, and no, I don’t know what it’s like to be so sick at 7 and then 8. But what I do know, is that with all my heart and soul, you are my daughter, and when you’re in pain, I am too. I just can’t show you.
When you were born, I gave you a piece of my heart, and my heart breaks for you now.
Now I will crawl into my own bed, put my head on my own pillow, and I will not cry any more tears tonight, but you will never leave my thoughts and prayers.
There is not a day that goes by, that I don’t wish upon a star, that this will all pass, and you can go back to being a kid.
Maybe tonight my wish will come true.
I could’ve written that letter.
My daughter was diagnosed with celiac this April, two days before her 7th birthday. While my husband and I truly cried tears of joy when we got the dx (it’s not cancer! It’s treatable!), my heart breaks for her every day.
She’s had GI problems her whole life, and spent most if last year sick, crying to me each morning to not make her go to school because she thought she was going to throw up (after eating toast for breakfast). No, we said, you were fine when you woke up so you can go to school. If only we knew.
Now we have to explain to a seven year old that even when she’s “healed” she still can’t ever have cake at a friend’s birthday party. She will always bring her own snacks. And she still might barf in herself or poop her pants at school if she accidentally has gluten.
She’s a trooper, in some ways stronger than me. She takes it all in stride because she doesn’t want to be sick again. If only it were that easy.
Wow! God bless Mom and her sweet little daughter! I understand a parents love all too well and Mom wrote about it beautifully!!! Thanks for sharing such an intimate letter!!!
Oh, how I can relate! My son was diagnosed at age 3. He is now 6 and in first grade. He accepted the celiac diagnosis and GF lifestyle much better than I did. Eternally grateful for that! I cried myself to sleep many nights that first year, but never let him know. A mother’s love has no end. Thankful for my healthy boy!
I too have an 8 year old daughter recently diagnosed with Celiac’s Disease. We have adjusted as a family, but by far she has been he strongest among us. For us it’s a roller coaster ride…one minute fairly easy to take and the next moment so difficult. Kids parties, play dates, bbqs, traveling; all of these have to be well planned out and each of them have had a little fun taken out of them for that reason. As parents we were happy to find out what ailed her, and happy to know that we could help make her better. However as a child, she unfortunately has had to grow up a little faster than necessary 🙁
I can relate to this very touching and well written letter. Both of my children have had health issues and yes celiac is an issue for one of my boys. I hope this little girl heals up soon. My heart goes out to her and her mommy.
May she heal and be well soon.
Warmly,
Michele
Thank you.
So beautifully written……she took the words right out of my mouth. We are 12 days into the school year and as I write this, my two daughters with Celiac(8 and 14) are both home with me today, sick and tired and fed up. Last night was a night that I laid in my bed after they were asleep and cried as well. Being powerless is perhaps the worst torture for a mom. I pray for the gift of patience every night because I’m simply out of it. Gluten Dude….your timing is amazing. To the mom who wrote those thoughts……God bless you and your little girl. I hope there ill be tears of joy and smiles galore very soon!
Thank you Rachael. We almost didn’t make day 4 of school this year. She’s been in so much pain, she can barely stand up. She’s back in testing mode – trying to see if there’s anything in addition to celiac.
I’m bawling. Literally can’t speak as I read this with my own 8 year old with Celiac. Sounds like our own story. Many, many tears. Thank you so much for sharing. Please let the mother know that we found great help of healing through the GAPS diet (gut and psychology syndrome).
I’ve have Celiacs my whole life and never knew until 2 years ago. (I’m 20 now.) I know what it was like.
I can’t write what I want to say because I don’t know how to say it.
So, Thank you for your post.
Wow. It’s beautiful that a family member cares that much. My family would never care that much or understand that much. She is a beautiful person & a wonderful mom. Her daughter is fortunate to have that support.
Tears. Oh how this brought me to tears! What a beautiful way to express to your child, later in life, what you saw and felt and how you reacted when they were younger. Just a really neat idea!
My 6 year old son was just diagnosed and he is my trooper too. It never ceases to amaze me how resilient kids can be. He has embraced the gluten free lifestyle (as has his 15 year old brother) in a way only a child can. But every once in a while something will sneak up on us and find us unprepared and that is when my heart breaks for him.
It is amazing how different it is to hear a child cry when they can’t have cake because of their behavior to what it is like to hear them cry because it truly is unfair because they can’t have cake because it will make them sick. 🙁
Let them eat cake, gf cake that is….have you tried the Gluten Free Betty Crocker or Bobs Red Mill GF cake mixes, cant taste the difference!
Just beautiful…thanks for bravely expressing what it is like to be a mother of a child with Celiac Disease (or any chronic illness).
Wow…very touching. Your daughter is in good hands.
I read this post last night with mixed emotions, thoughts of it have haunted me all day! I understand the mommy armor & I the pain….my 1yr old nearly died last year thanks to undiagnosed celiac & my now 8yr old was diagnosed too. There was a lot of frustration, sadness & pain in the beginning, but there has also been a lot of healing and the good days far outnumber the bad. I understand your tears. But also want to inspire and empower you. I cant tell from the post how long its been since diagnosis…but if she is gf, she shouldnt still be suffering so much. I hate to say it, but I learned not to put my faith in doctors on this one….warrior mom needs to dig deep. My 7yr old son got better gf, then 6 months in, he got worse. We tried things, cutting dairy was magic! Cross contamination may be an issue. My point, dont accept the pain- figure out the why that is keeping her from healing. Id be happy tohat anytime, we moms can get through this and she will live
So with you
It is asthma and nut allergy for my son. I get that whole keeping it together thing. I was pleased in a way when I had to go gluten, dairy, soy, corn etc free, as we deal with the food restrictions and label checking together.
I remember before kids wondering how parents handle kids being ill. Now I know.
Wishing all of you strength on those difficult days
Wow. I can relate. I was diagnosed about 11 months ago. I decided to have my 3 year old son who was always sleeping and cranky with dark circles unde his eyes get tested this spring – he was positive just like his daddy. It terrible to know that it was me who passed this disease to my son. While my heart breaks I have to teach him to be tough, he is doing pretty good and understands that gluten makes his belly hurt. I forgot to take gluten free crackers to his Sunday school this morning, I feel bad because once again everyone else got a graham cracker treat and he drank water. But he’s a smart kid, I’m proud that he already takes it in stride and directs his attention elsewhere on his own even though at times you can see that little bit of hurt and left out in his eyes. I’m his biggest fan and I’m glad we caught his disease at 3 years old instead of him being like daddy and actively suffering for 13+ years with no answers from doctors. Great Post.
I have to ask are your childs symptoms really gone?
Reading these stories and reading people suggest Gluten free processed foods (cake). Every thing sold in our stores as “GLUTEN FREE” is NOT really GLUTEN FREE. Please do the research. People that react to Gluten can react to all grains, including anything corn derived, milk because of Casein, soy and MORE.
I’ve had symptoms my entire life, exploded in the last 10 years. EVERY doctor was clueless!!! The only thing I can eat is Meat, veggies and fruit to truly have no symptoms.
Best wishes to all.
Oh how much I absolutely loved reading this. I finally found out about celiac disease a year ago ( I am 21) and self-diagnosed myself. I have lost 80 lbs so far and have completely changed my whole lifestyle and diet all by myself. All throughout elementary, junior high, and high school, I was in pain. I played basketball and ballet, (even when I was obese) to try to mask the pain. I missed sooo much school because of celiac disease and being so sick. I am so happy for all the kids who get an early diagnosis so that they don’t have to go through what I did with absolutely no support or help. I still feel really bad and tired but I am 70% better than I have been.
BB, I had your level of difficulty anything but meat, veg, and fruit for about 8 yrs. after diagnosis. I was finally able to add some things in one at a time over a fairly long time period. There are still foods that are GF that I can’t tolerate. However, most celiacs can. I have now been diagnosed for 25 yrs. Many years of suffering before that. I feel the degree of damage incurred before diagnosis impacts the healing process and the ability to eat GF without complication. My endoscopy came back with markedly severe damage to the small intestinal lining. I also have been diagnosed with other AI diseases about every 8 yrs since my celiac diagnosis. All to say, we are each individuals and will have individual outcomes. My sincerest wishes for courage in your struggle to get enough to eat and to feel nourished and satisfied.