On FPIES

So, my son has FPIES. (food protein induced enterocolitis syndrome: (Here's the list of foods he can't eat: animal milk or milk products, soy, corn, egg, rice, chickpeas, lentils, quinoa, pears, green beans, peas, nuts and nutmeg. And being outside triggers reactions, because some pollen is too similar to eggs. We haven't tried meat yet...too complex of proteins.) I sometimes hate talking about it because I don't want to be 'that mom'. I already feel like 'that mom' anytime we're around other people with food: 'Do you have an allergy list for your restaurant?' 'Oh, we brought our own food.' 'Can I read that label?' 'No Graham! Don't eat that!' You get the picture.

Also, I know that while it can be difficult and frustrating and emotionally taxing, that overall Graham is healthy and happy and we are so blessed. So I don't want to ever come across as 'oh we have it so hard.' We don't.

But, at the same time, I realize that 'hard' can be relative sometimes. And this is my blog, so can I share that sometimes, it IS hard? And sometimes I get angry about it? And sometimes I accept it and am grateful for it and how much we've learned? And sometimes I can't stand seeing another rash, or another vomiting episode, or finding poop in random places on the floor from so much poop, or 5 cranky days in a row because he just.doesn't.feel.good. And it breaks my heart.

Like tonight. Jim was gone for 14 hours today between work and an after-work commitment. Which were both good things, just made for a long day. And when our day ended with a child with a bad rash and a large mess that I won't go into, and I didn't know what it was from except that it was an allergic reaction to something, that I just wanted to be done with it. But then there was a boy in a bathtub with bubbles, asking to stay up and play 'for just one more minute!' and saying 'mommy pat me and sing one more song' in bed...and I'm tired and spent and melting to pieces all at the same time.

This life is not at all what I thought 'mommyhood' was. It's harder, more tiring and more mundane, all at once. (let's be honest) But it's also more full, and rich, and funny and wonderfully exhausting than I ever dreamed. I don't know what I'm doing most days, but I wouldn't trade it.

To end, some Graham quotes from today:

When I finished with our recycling: 'You all done recycling! Good job, mom.' (he's started calling me mom. Not OK.)

After giving him a sip of my black coffee: 'Mmm! That bery tasty.'

Anytime: 'I want to watch just a wittle bit of TV.'

After a long nap (first in DAYS): 'I all done seeping, mom. Mommy come pay in my room!'

Anytime I suggest doing anything other than what he is doing: 'I do dis for a feeew more minutes. I do dis first, then I do that.'

2 going on 15, seriously. I love him. I don't know what to do with him, but I love him.