Wednesday, July 2, 2014

Most Days Of A Special Needs Mum...

Most days are busy.  We always have an appointment, whether it be physiotherapy, occupational therapy, speech pathology, conductive education, or a hospital appointment.  We are always driving back and forth.  Sometimes I sit in a waiting room for hours waiting for a 10 minute appointment.  And sometimes I feel as though all those hours and hours of therapies are pointless if Lyla does nothing but cry.    

Most Every day involves calming down my child.  It happens numerous times a day and is caused by a variety of triggers - a phone is ringing, someone is touching her, her back is sore from pressure, it's too hot, something has scared her...  I am trying to get to her, hold her to tell her it's ok, but her cries are getting louder and louder, the breaths are getting slower and slower, her muscles are getting tighter and tighter, her skin in getting duskier and duskier, and then she stops, sometimes passing out for a second, but always managing to come back around.

Most days I get sympathetic smiles and looks from passers by.  They can tell Lyla is disabled and they look at me to say 'I'm sorry', or I get a comment like 'She is cute, does she have cerebral palsy?', very rarely people ask questions to get to know LYLA - her name, her age, her favourite toy...  Or I get that worrying, scared look if the above meltdown happens whilst out in public.

Most days I think about Lyla's death.  Is it going to be sudden, is she going to get sick, are we going to have to put in to effect our resuscitation plan?  Am I really understanding and prepared for the possibility? 

The answer is no.  Always, no.

Most days I think about my own death - what would happen to Lyla if she outlived us?  Who would I trust to care for her the way I want her to be cared for?

Most days I wonder what old friends are doing.  Not the ones I still have contact with, occasionally, I mean the ones I had known for years, the ones who just suddenly fell off the face of the earth when I had a child. A child, or a child with a disability?  I'm not sure.  Do they think of me, of us?  Do they secretly stalk us through social media?  Would they attend Lyla's funeral to make it look like they cared? 

Most days I think about my new friends, the friends I never thought I would ever need to meet, but the friends I really do need, the ones who go though what I go through everyday.  The ones I know in real life from this journey travelled, from the various therapies I go to, the ones I meet in the shopping centre, the ones I only talk to online.  My support group.  They are the ones I go to when I need help, to get everything off my chest and I know they would never judge because they 'get it'.

Most days are trial and error, trying to decipher those tiny signs Lyla shows, hoping I've got them right.  Trying to understand what she wants, what makes her happy and what doesn't, trying to be on the same page, trying to do my best to help her.

Most days I learn.  Try to learn sign language, trying to learn about Lyla, trying to learn about disability support, trying to learn what the therapists tell me, trying to learn what the doctors tell me, trying to learn medical terms, medical facts, medical research, medical conditions.

Most days I teach.  I teach the therapists those tiny signs Lyla tries to make, the ones they ask me what they should be looking out for, the ones I then look at them thinking 'I hope I got that right, because really, I am as clueless as you'. 

Most Our free days we spend at the shopping centre.  I need to get out of the house, to get away from the therapies, to get away from the housework, to get away from the quietness of the house.  I need to go somewhere I do not need to think about anything, I can just walk around with Lyla looking at things and have a coffee.

Most days I find an excuse to have a coffee date.

Most days I wonder what my life would be is Lyla was your 'typical' child.  Would I be working?  Would we be financially better off?  Would we have other children?  Would I still have my old friends?   

Most days I forget.  I forget to place orders for Lyla's medical and food supplies, I forget about appointments, I forget to message back friends, I forget to return calls, I forget what I did yesterday, I forget to pay months and months worth of overdue hospital invoices, I forget what I am meant to do next, I forget what skills Lyla and I are meant to work on that week, I forget to bring the washing in before it rains, I forget when she did something amazing that I need to tell someone about, I forget my pile of questions I have stored in my brain for our doctor appointments.

Most days my house looks like a bomb site.  I don't have time to wash the dishes before we rush out of the door in the morning to make that appointment.  I have a pile of washing waiting to be folded that just sits in a basket until we pull it out to wear.  The house is covered in a layer of dog hair because I can't keep up with the rate that the dog malts, plus turning on the vacuum is a trigger for Lyla.  I am sick of washing bottles.  

Most days I hold Lyla.  Hold her for hours trying to put her to sleep, whilst struggling to stay awake in the meantime, so I can eventually put her to bed instead of sleeping on the couch.  I can't put her down if she's not quite in that right stage of sleep because that tiny, minuscule movement, startles her, then I find myself trying to put her back to sleep for the next 45 minutes.  I hold her because she won't let me put her down to have a break.  I hold her because I want to.

Most days put Lyla on the couch and turn on the TV or the iPad just so I can distract Lyla while I wash the dishes, or have a coffee, or a lie down for 10 minutes.

Most days someone tells me I am amazing.  Amazing for going through what I am going through.  I am no more amazing than the next mother, in fact I am certain I am far less amazing than most.  I am just doing what I have to do, just doing what everyone out there would be doing.

Most days I think about what Lyla would be like if she didn't have a disability.  I cannot picture it though.  I cannot envision Lyla running around, or talking, or riding a bike.  I love Lyla the way she is.

Most days I want to take it all away from her.  I want to take away the scoliosis and the respiratory issues.  The things that hinder her, the things that impact her life.  Just one less thing to make her life just that little bit easier.  I can deal with disability, that's not the issue, I cannot deal with seeing my daughter suffer, slowly.

Most days I wonder how she will go in school, or is it really, how will I go when she is in school?  Who is going to respond to her needs?  Is this person really going to understand what it is she really needs?  What if she is so upset she can't breathe - is this new carer going to manage this, because many medical professionals cannot?

Most days Every time Lyla does that one thing no one expected, I feel as though all those hundreds of hours of therapies, or what ever it may be, were worth all those tears.

Most days I feel guilty.  I feel guilty for not being able to return a call or message from a friend, not being able to drop everything to help someone, for not giving my husband as much attention as he deserves, for leaving Lyla on the couch while I did something, for spending the day at home but still not managing to do anything around the house, for not being able to just go out with friends.

Most Every day I sing to Lyla.  I sing songs I do not know the words to, I sing songs I make up, I sing theme tunes, or commercial jingles because I know that makes her happy.

Most days I am exhausted.  Exhausted from doing nothing, exhausted from not sleeping well that night, exhausted from driving around all day, exhausted from... who knows what else, I am so exhausted I cannot remember.

Most days Every night I check Lyla.  I check her throughout the night to make sure she is still breathing.  If I have had an uninterrupted sleep I wake up in the morning in a fright, worried because she didn't wake me up overnight.  Is she alive?  I rush to check on her...

She is still breathing.

Most days I fight.  I fight to keep Lyla alive, I fight to get her the best care she deserves, I fight to get the medical treatment she needs, I fight for an answer, I fight for those with special needs, those without a voice.

Most days I think about how nice it would be if I didn't need to do all these extra things, if my biggest issue was my child talked to much, or what arts and craft activity we were going to do that day, or what park we should go play at.

Most days it would be nice not to worry if I have packed enough specialised formula for an outing, is her feeding pump is charged, have I got her medication with me.

Even after all of that...
Everyday is a good day, and everyday is completely worth it.


  1. This is ridiculously beautiful. Your words will touch everyone who reads them. Your daughter is extraordinarily lucky to have you and your husband :) Thankyou for sharing this.

  2. Beautiful. I write about our journey I know your path this is my boy

  3. Just beautiful.
    Took my breath away as I remember days like that and every day was worth it.