If you are a parent of a child who has a chronic illness, especially if it is new to you, know this:
There are going to be days when you feel like you and your family are kicking that illness’s proverbial butt. And there are going to be days when you feel defeated. You have to take each day as it comes. The grace and strength God gives you to be there for your kid is the same every single day. Some days we are just more aware of our need to lean on it.
Today my 4yo son is on day 4 of a bout of digestive distress that has me scratching my head for ways to curb it. He’s refusing to eat one of the two sources of carbs/vegetation that he is normally willing to eat; and honestly, up until now, I have been feeling defeated. It’s not that I don’t know what to do, it’s that the best options that are left aren’t easy. So as I started to feel that familiar self-pity creep up and say, “Why are we even going through this???” I took a moment to recognize it. Yes, this is hard. It is painful to watch your child struggle with something they never asked for. It is hard to try and tailor your life around something as unpredictable as an autoimmune condition like Celiac, or the myriad of other chronic conditions that affect so many kids. It is agonizing to have to constantly say “no” to things that could seriously harm your kid, but that they want so desperately to experience (Yes, even a 4 year old knows that there is something innately delicious about a cookie he has never tasted).
Feel it. Recognize the difficulty that your child faces, that you face. Don’t try to pretend it isn’t there. But then…
Make a choice. You can choose to stay defeated, or you can choose to actually LEAN on the grace that’s there and do what needs to be done.
I kind of hate when other people laud the choices that we make every day as “special needs moms.” Many of you will empathize, I’m sure, with the fact that — while there are other choices — the other choices don’t really feel like choices because they mean sub-par results for your child and for your family. Of course I learned a new way to cook. The old way was killing him, literally. But, beyond that, let’s be completely honest. I don’t LOVE that we had to change our lives. I don’t love that we’ve had to make the choices we make. Some of them are definitely good choices, even if our kid wasn’t sick. And I have extra reason to stick to them (my child’s life kind of depends on it); so hooray for healthy choices, right? It can be really easy when very (very) well-intentioned individuals (who love us and want to encourage us) say such things, to dwell on the fact that we’d rather not be making those choices. But that just leads to more self pity, doesn’t it?
So you make a choice. Today, I made a choice. I decided that, by the grace of God, I am going to do what it takes for my kid. I know, I’ve made this choice before, but I am taking each day as it comes. Today, I am deciding that Celiac Disease will not defeat my child or our family, and does not define my child or our family. And I’m making a choice to pray, “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference (The Serenity Prayer, as written by Reinhold Niebuhr, see the full text here.)” There are things I can’t change in our lives, and there are areas in which I need to take action whether I “feel like” I can or not. I need to choose today that I will rely on grace and God-given wisdom to fight the right battles.
The hard days can sneak up on you, especially if you’ve had a very nice run of good days. We like to think that, if we’re having a good stretch of easier moments, that must mean it will only get better from here on out. That first bad day can really smack you down. And when that first bad day turns into four days…it is easy to get discouraged. But don’t feel defeated by the hard days. You have to choose to overcome them. I know that I don’t have what it takes to be everything the ones I love need ALL the time. But I know Who does, and I know that I can run to Him freely, and get what I need for that day.
My Whole Life 