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. ** I just want to add that I don't blame myself -- it's an autoimmune disease -- I know there's been worry which I saw on the comments (thanks for caring friends) -- I just put the part about starving because I had been in to our previous clinic multiple times a week for several weeks telling them he wasn't absorbing his food right and they kept dismissing my concerns. It was so frustrating to speak and speak and speak and have them ignore 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.
