I think that having had chronic illness from the time I was young, I accept it as life - for me. However, when it hits your child, it is not normal life, it is unfair and absolutely not ok. I think that is how I am feeling of late. I was talking to another mom this week who's children have chronic illnesses and they will forever. (I still have hope our baby will come out of this illness sometime soon.) But we were discussing the misunderstanding that comes with having children who are sick - a lot. People who haven't experienced it frankly can't understand it. And that reality is a bit lonely.

We have been fighting our baby's illness for a month now and have at least a month to go before we find out if this is a life-long battle or if it is over. It's not an easy road. Yesterday, he didn't eat at all. He if fussy all of the time. And you can just tell that he feels pretty rotten. It is sad for his mommy, daddy, and brother. And it honestly is taxing physically, emotionally, spiritually - in every way.

There is a lot of fear involved. Fear that this disease will be our normal. Fear that he will get sick again and complicate his clinical picture. Fear that he won't eat enough to get well. Fear that I won't be able to care for him properly. Frustration at my frustration through this process. (I should totally understand having been through lots of years of illness myself, but it is still hard to not be even able to comfort your own child or get him to even take one bite of food.)

It's a lonely road. We have been home for a month - I have been to church once in about six weeks. We aren't even shopping much for groceries. Trying to do it as quickly as possible as little as possible. We are staying by ourselves in our little house - with our four walls closing in around us. And we do it on purpose to keep our baby healthy.

It has been mentioned to me that we seem to be sick all of the time. True. Unfortunately true. But at this point, this is God's road for us. We just need love and understanding and prayer and even phone calls. It's nice to know you are remembered and loved even if you haven't shown your face in the outside world for a while.

I think the biggest thing is understanding - not trite comments about how things will get better, God is in control, all of this is preventative and not a bit deal, ect. We need people to trust us that this is a difficult road, but we are doing the best we can. We know God is in control and we are glad. But if it isn't possible to say anything more than that trite comment, just don't, you know?

I'm sure this post seems harsh. But it is from the eyes of a woman who has been there herself - being sick, and now has a sick child. It isn't easy. And unfortunately, whether you are or not, you feel forgotten. And those who put down the illness as no big deal really make things worse on the emotional end.

Understanding goes a long way to showing God's love to a struggling family. More probably than anyone can know unless they have been there.