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:
Forsaken.
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.
Forsaken.
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?
WHY?
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.
Oh Meriah. I’m so so sorry to hear this and wish I could give you a giant hug. In truth, I guess, I have so much been living vicariously through your beautiful and courageous self and family. I hope that doesn’t sound creeptastic. Fam and I live -right now- in this teeny tiny little town nowhere near salt water and I feel so stuck. I know tough 1st- trimester- sick-in 3rd baby pregnancy has a LOT to do with that stuck feeling. But I cannot get enough of your posts and tell my husband all the time what you guys are up to. I so wish I just fund whatever you guys need, cuz I totally believe in what you are doing. It’s crazy, it’s amazing and inspiring. I just love it and am totally cheering you on. I will totally keep you all in prayers. And also ask St. Anthony to find what you need and St. Christopher for good trip juju.
Somehow I just feel so connected to you, maybe it’s because you’re an artist, or your uncanny ability to write who you are or just your blanket unapologetic honesty, but I do. I’m a wear-it-on-my-sleeve girl and appreciate that in people. You’re right, God does have an amazing sense of humor and loves to challenge our best laid plans. Husband and I have found that out the very hard way since meeting one another and building a life.
I have to confess I’ve been feeling rather sorry for myself in this pregnancy from the sickness. And then today I was feeling pretty darn good- and the worry of another loss crept in. I was like, wait, it’s too early to feel this Okay, did I take my medication yesterday? Did I pick up our 19 mo old daughter wrong? Baby, are you still okay in there!?!. So, the agonizing wait of the early weeks has begun and I cry at every little commercial or sad song I hear or for no reason at all. And so I started feeling crappy this afternoon and was so. freaking. grateful. I haven’t been so glad to feel like I couldn’t get off the couch maybe ever. Aside from now knowing how on earth we’re going to support another baby and do this family thing, I just know God has us, little old us in his hands and wants for our good. Is working and has plans for our good. It is so hard for me to remember this. To carry my crap to the cross and let Jesus handle it. I’m kinda stubborn.
So, I think, man, Meriah and her husband have three amazing kiddos, one uber cutie with down syndrome, living out of their truck-on purpose!- with the Biggest smiles on their faces I’ve seen like ever. Maybe I could see the bright side and remember all the love in my life.
I mean, life is good. God is so good. And I need to focus on the good. And reading your posts and getting to know you has helped, like more than you know.
I know that whatever happens for you it will be good. Blessings and I hope to get a chance to share a moxie story soooon. Ciao amiga. -Vic.
that really made me smile – well, the last part of it did (‘living out of the their truck – on purpose’ !!!! LOL) – and big, huge hugs with the pregnancy feelings. that is tough.
xoxo love you.
Stretch goals. You will appreciate the journey and freedoms after building a larger and wider safety net. It’s alllll goooood. (Pete the cat)
Find ways to generate many more sources of income so you are not as dependent on any single source. Seems daunting but seriously with your writing it’s timing. You are chock full of stories we all need to hear. Market this blog and it’s self sustaining case your posts are P.H.E.N.O.M.E.N.A.L.
If other bloggers appeal to a market for its platitudes; you appeal to the majority of analyzers and technical readers who gag over writing without depth. Dive deep into the social media (blog for now) environment more apparently. You are capable.
Plan to attend the national convention if there is any interest at all or possibility. Network or research online how to or how to expand or reach the right ears
Networking cause this blog is a gem. Your mt Fuji is our Everest. Your Everest leads to nirvana where we will not attain but we will like to read about your journey.
You live a life of serendipity and challenge. No middle ground of planning and care will last; health wealth and happiness will be hugely up or down to an overall average life with lots of roller coaster.
No life is average. We all have a random element. Minimize risk and live fearlessly.
Good luck and fast relief of your unsettled, “now more fearful of risk” heart.
thank you so much for this… I really appreciate it and take your words to heart – thank you!
Thank you Meriah for your inspiring, funny and very readable blog. I have not read every single one or know your story properly yet but want to know more. I also want to make a donation to your travels. Although will apologise in advance as it will be small. So it may buy a meal or something for your gorgeous family. Best wishes & sending love. Ann