I have been wondering recently if it’s just me or if most parents feel that with New Year comes some New Battles.
Or New Year same old battles?
In my world, everything is a battle.
And it’s funny because when I talk to friends or they come and visit and see some of Ethans new equipment, they reply with “Well, that’s brilliant, that didn’t take too long to get either, did it?” And they mean well.
They really mean well but nobody wants to be that negative ‘friend’; God knows it is hard enough to keep any friends once you step into my world, so I normally respond with a nod and a smile.
Inside my head I am screaming that it took me a friggin year and a half, a dress size (up or down) and it’s still not suitable but it’s all they could source.
I used to tell those involved with Ethans care that things will go downhill once Ethan reached a certain age.
I told them this as a way to prepare myself and to try to get in place equipment Ethan would need before he actually needed it, if that makes sense?
This thinking and talking only benefited me. It did indeed prepare me for the decline that was always going to come with Ethan but that is all it did.
Nobody involved in Ethan’s local care ever really understood that this little whirlwind in front of them, who was screaming a song from the top of his lungs would one day lose the ability to understand, speak, walk, eat …
We are here in that ‘one day’ now.
Despite all my talking and my belief that it did help me, I still struggle with the little boy in front of me compared to the little boy of years gone by.
But, I ain’t got time to feel all that in my day to day as I am sure plenty of parents like me understand.
I have to battle.
I have to battle my innermost heartbreak just to get up.
I have to battle sleep deprivation daily.
I have to battle the stress of everything that goes on in my mind and heart daily.
I have to battle anxiety just enough to be able to smile.
I have to battle with all the services, the city council,schools, often doctors offices and so much more on an almost daily basis- not all for Ethan either as I have two other sons.
..And I am not the only one who battles daily like this.
There are thousands of families who have to battle to get their kids a school place,the right education, their basic needs to be met.
Don’t even start me on Ireland’s idea of disabled toilets, that in itself is a battle the whole of Ireland should be concerning themselves with.
Battle is a funny word because it implies someone will win.
These battles we fight- no one actually wins.
No one walks away feeling like a winner; most parents feel horrible having to battle for help and supports that their child needs in order to live, in order for them to enjoy the simplest of things in life like a safe bed to sleep in.
Just before Christmas we were finally given the green light for a sleep safe bed for Ethan.
I didn’t feel like a winner.
I felt sad.
It was and is a stark reminder of how far Hunter Syndrome has progressed within my sons body and mind.
I felt that battle was pointless as Ethan needs a safe bed, I felt it was time and energy I didn’t have to spare wasted on something every single person in this world needs – a safe place to sleep.
This New Year for me means more battles. Some old battles and some new ones.
We physically don’t have the bed yet but I am expecting it any day now…
A battle I have been battling for almost two years is an extension for Ethan.
And I will be totally honest, I started the process a whole year before Ethan really, really needed it, I did not want an emergency situation on my hands but…alas…here I am.
Ethans ability to walk has decreased so much so that I have no choice but to carry him downstairs.
We toyed with the idea of a stair lift but Ethan doesn’t like swings or anything that moves as suspiciously as a stair lift might.
He’s unsteady as it is,so the thoughts of strapping him into a stair lift not only sets us up for another unsafe situation but one that is likely to scare the crap out of a little boy who has already gone through too much.
My husband carries Ethan to bed each night and each morning I carry Ethan down the stairs.
This is an accident waiting to happen but no matter how often I ring, or how many letters of support I produce our extension is still not coming any time soon.
It is a battle I am not willing to walk away from because Ethan needs to be safe in his home.
I should not be putting Ethan and I in danger in order to get out of his bed and down the stairs. Ethans current bed is two mattresses plus a makeshift safety bar along the side to keep him from falling out.
It does mean that we’ve to be over him and try to get him up in our arms in one swift move, a move I have not mastered at all.
Ethan should be able to have a shower in his own home too but that too is a battle as his bathroom is too small for the equipment he now needs and the amount of people it takes to shower him safely.
Respite thankfully have a suitable shower so Ethan does still enjoy a shower there.
So, I will battle on.
I will be told over and over about budget and waiting lists; and I will repeat myself over and over about how time is something we don’t have the luxury of.
I will be told too that Ethan will get his extension when they can cross the T’s and dot the I’s .
I’ve been told this since this Summer; it sure takes a long time to dot some I’s and cross some T’s.
So, I will battle on.
It is always a battle.
And when they knock the wall and finally begin, I won’t feel like a winner. I will feel sad that my 16 year old son requires all this extra space and equipment.
And there will always be a certain sadness that we are even in a situation where we couldn’t provide our son with all the care and needs he requires without help from our services, government and city council.
But, like everyone else in our circumstances we will battle on this New Year and every new day that we are presented with.
What about you, what are you battling this New year?
This was originally published on Firefly https://www.fireflyfriends.com/ie/blog/new-year-new-battle/