When I found out that I was pregnant with a baby with Down syndrome, I barely made it home before the howls came. The howls that had me on my knees that felt like they made their way up from my soul, out through my mouth. Each tear that came with them felt laced with blood and I felt forsaken by God to my core.
You see, I felt that I had already paid my dues to the alter of difference and difficulty. I felt that I had already climbed the mountains in my path; I’d already lost my fingernails from the cold, I’d already suffered from frostbite. I’d already been maimed, learned to walk again and then even learned to run. I’d paid my dues. I’d fought the fight, I’d done my share.
Because I know disability, you see.
I know disability like I know the back of my love, my husband. I know the creases in its skin, I know where it wavers, where it has strength. I know that it looks and feels different in different lights and seasons.
Disability can be fresh and true, boldly beautiful and it can fold back into itself and then whip you with backlash until you are bloody and raw. Until you have nothing more, until you are the essence of whoever you are.
I felt that I’d done my share with disability. I had paid my dues with disability. Fought the fight with disability.
But when I found out about Moxie coming, it hit me right in my gut:
I felt God had forsaken me. I had climbed the mountain of physical, mental and sensoral disability and was rewarded by a tower of ice: intellectual disability. I had climbed Mt.Fuji and when I was done, God spun me around and faced me towards Mt.Everest.
Nothing meant anything and all my fighting, and dues-paying was simply a beginning, rather than an end. It was just a warm up.
There are not many things that can kick me that hard, but I confess that I felt it again last week.
Not as much as that Wednesday in which I was told the results of Moxie’s amniocentesis – nothing will hopefully ever hit me as hard as that did – but still, forsaken.
A major funding source for our trip in the here and now was pulled and we are left trying to figure out which way to go,
if “go on” at all is the right answer.
I felt like God kicked us hard – after so much! SO MUCH! After we’ve given away almost everything we own! After all the struggle, the effort, the scrimping, the saving, the finagling, the resource-mongering! After SO MUCH it just makes my head spin!
Over two years of work.
WHY? WHHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY are you doing this to us, GOD?
Why can’t it be easy? Just for once?
I asked for prayers from my Mom and got busy with the good book myself. On my knees. With the howls – similar to the ones that hit me with the news of Moxie – bubbling in my belly, the howls that threatened to erupt on out of my throat with the tears.
Because to hope and long for something so hard, to work so fully for it, then to feel it slip away so quickly is the stuff that can break a heart.
And then this is what happened: a sense of deep peace came over me, bit by bit. I know the prayers have reached where they need to go – I know the energy is flowing towards us, I know it’s all going to be right.
I still don’t know HOW it’s going to be right – I’m applying for jobs right and left, we are looking into going back up North to work for a season or two, save money and then head back down and continue.
But it’s all right. I’m not sure what is going to happen but it’s all right.
We are not forsaken – God just wants us to live up the challenge of living with some moxie, I guess.
Ha! – oh, that was a good one, God. Gooooooooooooooooooooood one. Pulling the rug up from beneath our feet when I have a “living with moxie” challenge on the blog. *very*funny*
God has nothing if not a splendid sense of humour.
This is what I think right now: that it’s easy to feel forsaken when something hits you in the gut. The desire to howl is primal.
But far from being forsaken in the birth of Moxie, we were being given a gift.
I’m inclined – and hope – to think that this might be the same.
I just don’t know what the gift is yet.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.