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.