If they had any idea of who I am, how I tick… words like , “we’ll see” and “tentative” wouldn’t flop out of their mouths like dead fish on a grocery scale. They would understand that I live in the known, in the understood, in the answers. I flounder, like said fish in the unknown. I was made to know. To puzzle a thing out until the maze is straight , the path is clear, the clouds part… soooo many other euphemisms and analogies… we could absolutely drown in them.
But there I am, slightly sleep deprived in the x ray room with my lead dress on and my beautiful lead necklace snug while I feed Thaniel barium concoction after barium concoction and I know I wasn’t meant to hear the excited “There it is!!! aspiration! that’s a positive!” but I did, and I broke down then and there, even before we’d moved on to thicker puree’s and other answers, because this was confirmation of a years worth of worst fears and I was one part relieved and justified and one part inquisitive and all parts horrified as the truth of Thaniels situation sank in deeper and deeper. Each bottle, each lovingly handmade meal I painstakingly spoon fed into his wee body was slowly but surely drowning my son, as he aspirated on it.
I asked for a swallow study a year ago. I questioned the constant chest colds and pneumonias , I was angry at the pronouncement that “that’s just down syndrome” and that “they” have weakened immune systems, “he’ll just have to outgrow it” . But I followed the treatment. I adapted to the program. I failed my son at every turn and today I am brought so low and only held above water by the words of other mothers/nurses who have buoyed me with words of love and encouragement like “anyone would have done the same” and “you couldn’t have known”
Let me paint you a picture.
My son, tiny, helpless, gasping for air, fevered damp hair pressed against his head, tummy distended, shiny and red, he’s too weak to cry and I’m clipping him into his car seat while I pray under my breath… “Father touch him, Yeshua heal, Adoni undertake, see what I can’t, YHWY please!!! ‘ Driving in the dark down highways that have become familiar despite my country girl upbringing. Pulling into parking spots I now deem “favorites” . Running with a stroller laden with a bag I have packed and ready in the car at all times into the emergency department with the words “dr…. is expecting us” on my lips. What follows is a history… I have it memorized. A few cursory tests that are simplified and expected. Then the I.v, it takes several tries. We hold Thaniel down. The chest x ray is next. It’s always pneumonia. We ultrasound his tummy, his bowels are backed up, he’s full of infection, he’s struggling to stay awake now, he’s weak. There’s vomit on his pajamas and his pant legs have blood stains on them from missed i.v attempts. It’s 2 am, I’ve been up since 4 am the day before because he wouldn’t eat and wouldn’t settle. He’s been in my arms in the rocking chair since I picked him up after work 9 hours ago. His daycare worker is concerned. I am “concerned” ( what I really am is terrified). What I don’t know is killing us both. I’m jealous of the knowledge his doctors have, I want to ring them like rags until what they know drips out onto me and makes me a better advocate for this little piece of heaven I’ve been blessed with. We are wheeled up to a room around 6am, I’ve emailed work… I won’t be coming in, I don’t know when I will be back. I don’t know what is wrong, I don’t know what will fix it, I don’t know what I will do, I don’t know who will take the boys to school, make their lunches, get maddy and cail to work, take the dog to school, yes, the dog to school, help Judah with his home work, pay the bills while I’m bent over a prone body, hold benji during his night terrors, make dinner, do recess duty, be the mom/dad. His dad sends a text “how is Thaney doing?” ‘not well’ I say ‘can you help??’ ” you know I don’t handle that stuff well” and we hear nothing else from him… I don’t know, I don’t know, I don’t know. It’s our third I.V today, they keep collapsing. He isn’t responding to the new antibiotics, his body is rejecting the treatment. His lips went blue last night and and we put oxygen on, He has a tube in his nose, up his bum, in his arm, into his heart, and I still don’t know anything more than I did when I came in. Two steps forward, three steps back.
This is the last year. THE WHOLE LAST YEAR.
This is the norm. I’m told this is to be expected. I’m frustrated but chastised because this is what we all face and didn’t I pray just to see my son born alive? didn’t I say “any condition Lord just get him here?” so who am I to complain? So many have it worse, have it harder, have to say goodbye… suck it up, be grateful,
He has scars. I have scars. We are scared as a family.
I am blessed, but broken.
And then in an instant all of those hours and days and weeks and pain and questions are swept into one giant dust pan. “Aspiration”. He’s drowning. Daily. On the food I give him. But there’s a cause.
David the beloved said it once.. and I feel it. “is there NOT a cause!” He was talking to his brothers.
The philistines were taunting. The enemy was standing at the battle line and they hurled insults day and night. and David came apon the army of the Lord cowering in fear and in a second summed it up. “IS THERE NOT A CAUSE?!~”
In a few hours that boy David would shuck off a suit of ill fit armour and grab a handful of rocks. Not alot. Just enough. He’d stride, loin cloth and slingshot up to the battle front and listen to the enemy call him a dog. a toy, a nothing.
I’m nothing. Against Hirschsprung’s and trisomy 21, I’m nothing
He eyed up the competition, he took quick stock of the situation and he asked his bigger wiser brothers, “Is there not a cause?” Doesn’t this situation warrent a response? isn’t there something we should be doing?? Isn’t there a plan of action? a reason? AREN’T YOU GOING TO DO ANYTHING!!! And then he did… He just wound up and let one fly. Faith in flight. Size ain’t where you get your power from.
I distinctly remember feeling like I should be stomping my foot. A sense that I should be digging in my heels, an embedded response.
And then the last taunt landed over the battle lines, one more doctor asked if Thaney was in daycare and when I mumbled a guilty “Yes” and the wiser, more educated GIANT head across from me nodded in condescending pity I snapped
I cried and cried and cried. I cried so hard they couldn’t understand me, I cried so hard they couldn’t console me, I cried so hard they began to worry for me… and they called up a social worker. Someone to mop me up and figure me out and get me to consent to the next treatment without histreics.
She ended up being my slingshot.
“are all the kids in your sons daycare in hospital??”
“are all the kids in your elementary department home sick?”
“so maybe it’s not that?? maybe it’s something else? maybe not everyone gets this sick this often??, maybe someone ought to ask why…”
She urged me not to quit my job, which I had just naturally assumed I’d have to do because who would purposefully do this to their own child??, she asked me to give her a chance to get me into the Down Syndrome clinic and see if they had more answers than what I’d encountered so far. She asked me to have hope. She said “Is there not a cause?”
Flash forward to yesterday to those two doctors excitedly exclaiming over the first of many x ray’s “That’s positive aspiration!” I should have been upset at that, but I wasn’t. I broke down in relief, in thanksgiving.. the giant had just received a blow to the head.
A cause, a reason, a justification. No more “that’s just down syndrome“, no more ” he’ll grow out it” a hint, glimpse, a shot.
We are a long way off. There are roughly 400 reasons why Thaniel would be aspirating what he eats. But the stone has left the slingshot and it’s embedded into the forehead of the enemy. An army is chasing it down now.
I know later David danced down the street in his loincloth, I know he celebrated and partied like it was 1999.. but I think maybe that particular day, just after he’d taken the head off of the giant that had for so long taunted and held captive the armies of Israel… I think he may have been a bit like me today. Maybe he found a quiet place to lay down his sword, put his head on his drawn up knees and wept. Too long at war, too long harassed, too long unheard and now just crying for the lost, the wasted, the spent. I have spent this day weeping in little bursts of grief for what has been, whats been lost, what shouldn’t have happened.
Tomorrow we celebrate.
Look out tomorrow.