Keeping in touch with people is extremely hard.
I’ve had colleagues joke that I “only” work one day a week and must spend my life enjoying coffee shop trips.
I wish this were so.
And if someone is doing that for a living – how do I apply?
This journey has made me become a very unreliable person.
My two weeks in advance are generally always booked up with things like physio, speech and language appointments, ophthalmology, audiology, optometry, orthoptics, surgical pediatric appointments, dietician, occupational therapy, portage – you get the gist.
If this isn’t a challenge enough, add in Amy’s chronic crying – this is enough for me to either HAVE TO leave the house, or HAVE TO stay in and isolate myself from the world.
It makes me quite emotionally unstable, it can make me appear irrational, it can make me shut myself well away.
On the outside I’ll smile bravely, have a laugh, pretend all is okay.
But on the inside I’m hurting deeply and want nothing more than to hide away in bed and pretend everything is okay.
I’m sure a lot of us are like that and I know we will all be okay in time.
It can make us so unreliable, depending on even the last ten minutes that can determine how our free time is spent.
There are days when I can’t be alone just us, I need to surround myself with distractions and conversation, but equally there are days when I need my space.
I have a small group of incredibly supportive friends that never judge me for that.
These friends understand what we are currently going through and will go out of their way to be there for us.
You really learn who matters and who to keep in your life for the good times (which are absolutely going to happen.)
Today we got news that Amy needs major surgery.
We have wondered for over a year now since her fundoplication failed.
This news has come as a bit of a relief because to finally know, but obviously we are scared.
No one wants to make the decisions we have in the last 21 months, but when you look at the bigger picture this needs to happen.
This news in itself will take a while to settle with me.
I need some thinking time and will most likely withdraw into myself a bit whilst I think about life and why it perpetually throws these curveballs at us.
Never underestimate the value of family and good friends.
They are there for us through thick and thin, when I can barely cope, and when I am ploughing through fighting for what we need to make things okay.
Even little gestures can help our day be much easier – even just a friendly stranger helping me lift the wheelchair up some steps, for example.
I’ve had friends arrive with flowers – just because.
I’ve had friends sincerely offer to help me with Amy’s care needs.
Incredible, all just amazing.
They don’t have to do that at all, and yet they do.
I guess friendship means something different to everyone.
To me it’s someone who can listen and understand, but also include you in their life.
Someone who can provide a distraction, someone who can make you laugh.
Someone who can deal with the fact I will NOT cry in front of them!
Friendship now is simple.
I have filtered out a lot of people.
People who are not willing to be part of our complicated life – and that’s fine, I wish them well.
They are missing out hugely.
I had a friend I have known since birth tell me they wanted to “take a back seat” on my life.
This shattered everything I had ever believed about friendship, how they could just request to disappear from your life after being such a huge part of it for such a long time.
I am still reeling from it now and it has made me a lot more cautious who I let in.
I may come across very friendly and outgoing, but this is all a front and letting people in is actually very hard for me.
My mix of friends is a great one.
Friends from when I was tiny, friends who I have met through the special needs journey who “get it”, friends from college, friends from uni, colleagues and ex colleagues.
A very mixed bunch all from different backgrounds and places.
It is our differences that make us beautiful, variety is the spice of life, and all that!
I want Amy to have friends with extra needs, friends who are typical who can advocate and include her.
I want so much from this world and I am glad I have the people around me to help me get it.
I love seeing our children develop their own personalities and skills whether they are children with disabilities or not.
To those friends – thank you so much.
To those who are friends with others like us – thank you so much.
You help us carry on and you keep our faith in humanity!
And we are also sorry for so openly discussing poop, stomach related issues, ranting about “the system”, drinking all your coffee, and for using long medical jargon!