I am the woman who hurts her child, knowingly, day in and day out.
I am the woman who holds down her child so others can do the same.
I am the woman who tries to hush his screams, promises it will be over soon, who knows it will start again tomorrow.
I am the arms he trusts despite my lies and my betrayal.
I am the one meant to protect, who cannot stop the pain and the hurt.
I am the one who cries for his tears.
Since he was old enough to fight back he has fought. The nurses have always commented on how strong he is, and I would smile and say “he’s had no choice” whilst pinning his tiny body down as they inserted another NG tube or a cannula. It’s one of the reasons I never learnt to pass them myself – I couldn’t cope with the idea of someone holding down my child whilst I did something that might hurt him, that made him cry so much. Thankfully he was an incidental puller of tubes, although he has screamed the place down all too often as he’s torn the tapes from his skin and as I’ve reattached new ones. He’s never been compliant – when we were told at a few days old he was so sedated he couldn’t move, you would curl his toes around your finger and hold you tight.
In hospital he fights against everything except lie-down X-Rays and Echo’s done by ladies (not sure if it’s the telly or having a leg to stroke that soothes him but he wasn’t nearly as chilled when it was the man doctor!) I have learnt the best position to pin him for injections – 5 months of RSV jabs, yearly flu jabs as well as the routine). I’ve learnt how to pin him for bloods – veins and heel pricks. I have learnt to sing nursery rhymes to him over his cries as he is prodded and poked and weighed and measured and has his temperature taken with the most evil of creations – tempadots. I commend his fighting spirit – the fight that has kept him with us – whilst wishing that he would fight a little less at that exact moment as his tears spring and his screams echo. People have commented on how quiet his cry is – I wonder if it’s just louder to us, who can hear nothing but the sound if his distress.
At home we have swapped monthly NG tube changes for weekly PEG checks and now he has swapped to a button – for them all I was the one to hold him down against his will whilst he screamed for release and rescue, and then rocked him in my arms as he sobbed. I hate letting anyone else do it yet how can he trust me to make it better afterwards when I am he reason he is hurting? When I will not spring him from capture.
It’s not just that I am the one holding him down, I’m the one who signed off the swapping of the PEG to a button. I am the one who signed off the swapping of an NG to a PEG. I sgin the forms that allows them to do the things that cause the pain, and even though they are meant to help him, he is too young to understand that, to understand the cause and effect of pain and recovery.
Even as his instant forgiveness soaks into my shoulder, his hands curled into my clothes and his legs giving up bearing his weight so i cannot put him down, the guilt cuts in to me and makes me sick, I know I cannot forgive myself so quickly.
I’m nothing special – surely all parents have parental guilt – trips to the dentist, routine vaccines, the standard stuff most kids go through. Even as the parent of a medically complex child, where the guilt can be suffocating, i’m not alone. And yet we all are, locked in the pain of the moment.
Like many moms of premature or babies born poorly, there will always be a sense of guilt that my body didn’t do it’s job properly. It just needed to make one whole baby, count the chromosomes and the fingers and the toes and bake for the required time. Instead the chromosomes went wonky, his diaphragm and lungs and heart suffered the consequences and I couldn’t keep him in quite as long as I would have liked. I know there’s nothing I could do to make that earliest of processes go differently – those first cell divisions and replication before Xavier was anything but a cluster of cells are beyond the careful nurturing of the body during pregnancy. But guilt and love aren’t rational; rational thought doesn’t come in to it when you see your baby fighting for his life on an oscillating ventilator, his tiny newborn born vibrating with the effort of the machines to keep him with us because his body forgot to make his tiny little diaphragm.
The guilt of not being able to feed him, of not being able to produce milk for him “long enough” when I know I would tell any other mom that fed is best, and it doesn’t matter what as long as it’s food. Would his gut have recovered quicker if I’d still been able to feed him my milk at 10 months, 12 months, 14 months? He’s nearly 20 now and I have friends still breast feeding their children of similar ages, through all sorts of difficulties and personal battles.
The guilt of not dealing better with his oral aversion and thus the dependency on the tube, not once but numerous times, again and again – first from his bottle and then from his food. My TimeHop on Facebook is full of a cheeky little boy smothered in his food, whilst my son sits and cries at his dinner and throws it on the floor item by item until his table is blessedly empty. Other babies have chest infections and go off their bottles then go back on to it. Other babies, other mom’s, other, better.
The guilt of wondering if his delays are because of his medical issues, his wonky bits or me not doing enough at home with him. The babble we had at 10 months (perfect tactic to delay bedtime – babble at Momma and Daddy and how could they possibly make you go to bed alone?) is gone – perhaps it’s finally starting to return but i’m scared to say it out loud. At 20 months, whilst his friends are clearly enunciating their favourite words, I hate the sound of “uh!”. I can’t watch the videos from a year ago, it hurts too much, it scratches my heart. SALT will tell me a million times he’s too young to worry, but what if, what if. I can’t even teach him sign, and so he lies on the floor in frustration, crying at a world that cannot understand the sinple thing he needs us to know. What if one day he signs and asks me why he can’t talk like everyone else. Of course he walked late – every time he took a step last year the surgeon operated on him!! It’s one of my consolations that he has finally got the hang of it, even if he is emotionally attached to our thumbs taking him for a walk. But his speech, his social skills (he really doesn’t like other children within touching distance), his ability (willingness?) to do the things he is “meant” to be doing by now. When children do well everyone praises the parents for all they have done – so much is down to what the parents do, the home environment and for most of the day, for most of the week that falls on me. So when he misses a milestone or can’t do the things his peers do, how do i not feel guilty that i’m not the mom he needs?
They say that God only gives special babies to special parents, but it’s a lie. If there is a God dishing out the babies, we have Xavier inspite of our lack of specialness, inspite of our ordinariness. In some ways he has made me stronger, fiercer but in many ways my love makes me fragile. It threatens to shatter me into a million pieces when he is ill, to tear my heart apart when he screams in pain and i cannot fix it.
My perpetual backdrop is the guilt of wondering how I can ever be a good enough Momma when I hold him down and let the nurses and the doctors hurt him. In those moments I am thankful for his lack of words – that he cannot yet cry “No Momma, stop Momma, it hurts”. If his cries pierce my heart, i know his words will shred it into thousand pieces.
If I read this, I would reassure her that she is doing a good job, that someone has to hold him down whilst he has important stuff done, that he loves her, that she shouldb’t feel guilty.
But the guilt is still here.
The guilt lingers like a shadow – occasionally vanishing in the bright sunshine of his smile, his slobbery kisses, him eating food and dipping his dummy in my hot chocolate (or his Dad’s tea!). In those bright moments I forget the tears and the screams, the look on his face as I hold him down. He is my sunshine, my only sunshine, he makes me happy when skies are grey. When his arms are wrapped around me in sleepiness or happiness, when he squuezes tight his cuddly toys one by one or peers into the mosses basket at his new cousin (as opposed to the suspicious looks he gets if me or his Aunty Juju are cuddling him) it feels like our life could be ordinary. Then his feed pump beeps and he cries as I detach his tube. Or his tape comes loose and he cries as I change them. Or I ask the nurses to come and check him and he screams the house down as they poke his sore Button or the hospital arranges extra scans because I’m paranoid with fear of something else going wrong and me missing it.
Whatever I would say to another mom in my position, it makes no dent on me. I hold his (no longer so) little body in my arms, he wraps his fingers in my hair or holds on to the cross round my neck and I promise him it’s all over now. It’s done now baby, Momma make it all better now.
One day, he’ll be old enough to understand that whilst i rock him in my arms and promise him the world, i lie.