Feeling like a little bit of both tonight.
I've mentioned my son's story of battling eosinophilic gastroenteritis and autism in much earlier posts, so I won't go there. Suffice to say...he is a walking testimony of healing. He is also the one and only thing (hate to call him a "thing") that brought me running to God. There was something about staring into my 5 week old son's face, fearful that I was about to lose him to disease, that turned my whole world upside down. For the first time in my then 27 years, I called out to God, begging Him to reveal Himself if He was, like...real. And boy did He answer.
The only remnant of my son's personal struggle against both conditions, and praise God in the highest for it, is his diet. He's not yet been able to pass a food challenge of items containing gluten or dairy, so he remains GFCF.
I remember when we had to commit to this diet. It meant much more labor for me, as far as having to cook all of these foods ahead of time. Packing a lunch for my son isn't as easy as tossing a Lunchable in a bag or swinging by McDonalds. It's baking the chicken, cooking the burger, frying the eggs in his vegetable spread, and creating recipes from varied ingredients. Many a time I felt so tired that I thought I'd fall on top of the stove. But it's not about me, or the fatigue that ms lavishes upon me. There is no choice in the matter. Either find the energy to make the boy's food, or he doesn't eat. It's that simple.
Well, he and my husband just returned from a camping trip with school. One of us must attend any trips on which food must accompany him, so that we can reheat the meals I've cooked the night prior. He became saddened by the fact that all his foods are completely different from everyone else's. The other kids were talking about it a little too much for his taste. And so he got teary eyed. My dear husband was informing me, because I'm so nurturing and compassionate. Surely I'd make it all better. Surely.
Keep in mind, when I summoned for my son to join me in the kitchen for a private moment, I had all intentions of being Good Mom. I said to him, "Daddy said you had a hard time over the food thing on the trip?" And he said, "yeah. It gets hard when I can't eat what everyone else eats."
It touched my heart. I wanted to hold him and do that Mom apology thing. But as I looked into that perfect little face...my incredibly sweet, God loving, amazingly tender child...I morphed into my father. I said, "I know it stinks that you've had to eat like this for all these years, but at least you're eating food. Do you know how many kids with EG go to school with feeding tubes every day? I know it really stinks, but you have to realize how blessed you are, because there are tons of kids who would love to trade places with you."
My son looked almost ashamed, told me he was sorry, and retreated. Ugh...face shot to Mom...
I meant to be soft and gentle, I really did. But I know how far I get when I throw an internal pity party. I begin to focus more on the illness than on what I'm doing through and with the illness. I forget how blessed I am. I become self-centered and depressed...and I begin to think even worse things. I know I need to sit down again with him and just get really real. I want to tell him that there are plenty of days I'm quite sick of ms. I don't remember what it's like to feel completely healthy. And sometimes? I'm scared feces-less. That'll come up on spell check, for sure. What do you think it was about crap that someone said, "let's call it feces". I really like "crap", though I've never understood why it was thrown against a fan to signify the end of the line.
Thoughts like these really bring me down. About ms, not crap. They don't help me enjoy my life any better, don't help me do a better job at work, and don't put a smile on my face. I think it's totally fine to allow myself to feel...dare I say it...feelings. But like PS Friend says, "everything in balance". I want my son to see the blessings through the circumstances, to know that life isn't going to be easy, but that God's totally got it. And to trust in that, fully. When all else fails, even when his mother hugely disappoints him...I need him to know that God's got it. Now I just have to find the right way to say all of that.
I should probably wait until tomorrow to articulate. Still nursing what's most likely a mild concussion from falling into the wall last night on my 3rd bathroom trip. How does one fall into a wall, you ask? I dunno...should've asked me prior to falling into it:-) I might not have a good answer 'til the cobwebs clear!