Sitting up in my seat with my laptop cradled, I worked from my favorite Fayetteville coffee shop earlier this week. It’s the one I don’t work from much because of all the faces that I know and good talk more than work happens, which is all fun but not always good when deadlines fast approach.
I wished the dark corners of the shop were open but instead I sat framed in the sunlight from the window and scrunched myself in, ear buds on and shoulders pulled up, leaning into my laptop, hoping to blend in.
I saw someone I hadn’t seen in awhile, in that place of stranger and friend where at one point you knew each other. The only thing we really have in common now is a love for writing and an unwell child.
We exchanged general pleasantries, talked for a minute and then raw and real came up. Probably, mostly, all my fault as I sometimes skip to invasive questions as the truth is I have the capacity now to care and in a world with shields and deflections, having a 30 second conversation that is honest is becoming increasingly rare and valuable.
Our brief conversation on genetic disorders brought up a few memories I’d had when coping with Bear having special needs a few years back. I wrote a post about this awhile ago and felt writing an updated post from the me today seemed appropriate. Some of it will be the same as my other post, some of it evolved.
I probably shouldn’t be so honest here but I’m at a place of joy, peace and healing now so I feel that blunt honest truth might be appropriate.
Before I get started however, I want to really call out all the awesome people who are out there and have been our support over the years. Without the support of a few people I might have turned from my faith because what I was told wasn’t the kind of Christianity I wanted to be a part of. This post really is more of an awareness piece than anything else- I think that ignorance is where a lot of people are and if this post helps just one person be a little more sensitive and aware then it’s worth it.
You see, it’s not always what you are facing that breaks you down, it’s the lack of support and silence from your community that can destroy you in equal parts with the insensitive things that well meaning people say.
so here you go– Each of these could be a separate blog post on their own but I tried to keep it short and simple.
1. God won’t give ya more than you can handle. Of course this one is the first one I thought to mention. I’ve been though this one time and time again because it really caused me to have a crisis of faith. Based on this, I was clearly a terrible Christian because I was falling apart when the doctors told me that my son was mentally retarded and would never leave home, drive, get married, go to college or even want to… Guess what- God will give you more than you can handle. Sometimes it’s only there that we can see him. I could go on and on about how it’s taking the bible out of context, yada yada but perhaps until a person personally experiences crippling loss that they can’t understand. Believe you me that the times I have been hysterically crying in my closet so my kids wouldn’t hear me and be upset Jesus was right there with me.
2. If ya have enough faith your son will be healed. Well, then. *Clearly I’m a person of small faith* since my son has problems still isn’t healed. SO much of this is not theologically sound. I prayed, fasted, sobbed, begged, pleaded and his genetic disorder never left. What does that say to me about my faith? Also, it puts me in the place of God- as in if I try hard enough he might just relent, which moves us into a scary “works-based” place that is, at it’s core, the opposite of the free gift of grace Christianity is based on.
3. If ya have (insert person) pray for your son he will be healed. I believe in healers, I really do. People that seem to have a special connection to God and that miracles happen. So maybe it’s worth mentioning if you personally received healing from someone but just because God chose to heal you doesn’t mean he’ll do it for us. That’s the simple reality of it. Here’s another confusing layer- I’ve heard of people being healed but I’ve never personally heard of someone that had a genetic disorder being restored. I’m not saying that has never happened, but there seems to be a distinction. I had someone tell me of a prayer revival down in Florida that I needed to take Bear to so he would no longer have William’s Syndrome- Ben had lost his job at the time and finances were tight. I still have lingering guilt that had I truly believed I would have taken him down there for a chance to have been healed.
4. In the bible, when a person asked God to heal their child, God never said no. Actually there are stories in the bible where parents lost children even when they fasted and prayed. I don’t really need to say more.
5. Well, he might be mentally retarded, but did you read all the cool and special things about his disorder? He’s one of God’s special angels! GAHHHHHHHHH! I’m grimacing here but thanks for taking the time to do research- just realize I’ve done the same research on my own child’s genetic disorder and someone telling me the silver lining just seems trite.
6. God must really think highly of ya, I could never handle what you are going through — You are a super hero! I laugh when people say this now. Yeah- a wine bottle into a night I promise I don’t feel like a super Christian. I promise when I consider the fact he’ll need long term care that I feel overwhelmed- when I heard that his heart was ok and that he’d live a long “normal” life I felt devastated because the idea of him living after me terrifies me sometimes. That is the truth.
I could probably write another 20 but we’ll stick to these. It’s ok to say that you don’t know what to say. It’s ok to say you have no words. It’s ok to say this just sucks. Being supportive sometimes means just sitting next to us as we process life.
There is such a joy here now as I said- just because my words are honest and might startle some, don’t take away misery from this- I have a richer and fuller life than I ever though possible. We are a silly, mostly normal family that accidently takes selfies while little brother does his business in the background.
The point being- ultimately- that I’m painfully a human, flawed through but it’s because of the grace and mercy of God that my life is good now after going through a bit of hell. This doesn’t mean I never struggle with any of the afore mentioned issues- it simply means my “back to good” time is quicker. 
