friend/frɛnd - noun
a person with whom one has a bond of mutual affection,
There is the definition of friend. I wish it were that simple. Things in life are rarely that simple.
I am lucky enough to have a wealth of friends, so many people I can confide in, spend time with, laugh about things, be sad about things.
People who make me feel I have value and importance in life, people who validate me, care for me, and make me feel important.
Does Amy have this? She does. Does she know she has this? I'm not sure.
I always assume cognition with Amy, and indeed with everyone I meet.
Just because her body doesn't let her express herself how we do does not diminish her purpose or mean that she has nothing to say.
My heart aches sometimes when I ask her how her day was.
I read her school diary to see what she has been up to and I read it to her. "Wow, you planted some flowers today with your friends? That's awesome. Were they pretty? Did your friends help you? I can't wait to see them." It's all a one sided conversation.
I used to be a bit self conscious in public places about how my talking to Amy would be perceived. But now I don't care.
I just live day to day hoping one day all the of the PECs symbols, sensory support work, speech language visits will equate to her being able to tell me things.
She's probably sick of mummy constantly asking her questions that at the moment she is unable answer. What if inside she's screaming out to answer me and I'm just rambling on.
I am getting tearful typing this.
We have a lot of playdates. Playdates where I'm not fully sure how much Amy is appreciating that this is a playdate.
I had friends stay over, I went to sleepovers, I know Amy is a bit young for that now, but I wonder about the future. I don't even think that would be possible except at respite.
I remember sleeping top to tail with my friend, we would stay up chatting and giggling into the night. The whole thing was the best thing ever.
I just wonder what does friendship look like to Amy?
She has Mia, Jess, Persephone and lots of other able bodied friends. She has known them since birth.
They are all at an age where they are learning their differences. They see that Amy is not like them... Amy needs a tube to eat, Amy needs a wheelchair (not a pram!!).
My heart burst with pride when Amy's friend Mia pushed Amy around the shop in her wheelchair. In my head that was like they were walking hand in hand, skipping a long.
Her able bodied friends are all incredible and understanding. They don't judge, they don't bully, they include and are interested.
Thanks to all of their parents for raising them to celebrate differences. I hope hard that they all remain part of our lives.
Amy also has Mia (other Mia!), Archie, and so many other friends with varying degrees of disability. Mia and Amy spend so much time together at school, respite, or at each other's houses.
They like a lot of the same songs and activities so quite often you get a good 2-4-1 deal when singing or putting certain videos on.
These are the friends that can't speak to each other. They can't be silly together at the dinner table, or cut each other's hair behind mummy's back (referring again to my own childhood!).
Our days out very much feature wheelchair friendly venues, places with lots of space, places that aren't too busy but have that sensory input they need.
Each of our friend meet ups is so different because of our child's different needs.
There are a lot of "typical child" places we can't get to or fully access. We have to try and enjoy it in a different way.
Soft play centres for example are becoming increasingly hard.
I'm not going to lie, and I am sure my friends will understand when I say this. But there are days it can really hurt seeing the developmental gap between our children grow further and further apart and I see how different the mother-child relationship is.
But at the same time, I need to see it. I want to be around "normal".
I want so desperately to be a part of your world. We don't want to feel like a visitor to your world, we want to be a real part of it.
When you complain about your child refusing to go in their pram because they want to walk everywhere and you're there juggling wobbly toddler and flimsy pram... please don't suddenly apologise when you realise my child can't and probably won't ever walk unaided.
Your problems are relative to your situation. Sure that's a problem I wish we had. Your comment wasn't insensitive... you just invited me into your world and let me be a part of it.
Sure, a lot of these struggles are temporary... in 6 months time the pram won't even feature in your days out and you'll miss them falling asleep in it and having it with you. That's fine, it's just life.
I watch in awe as your child uses their fine motor skills to navigate their favourite ipad game. I watch in amazement as you explain to your child how to safely cross the road.
I recognise the challenges you face - raising any child is hard and you're doing it amazingly.
I thank you for your patience with us, we aren't always the easiest to be friends with. But the fact you still care and want us in spite of our unreliability and demands makes you a super friend.
Friendship with other special needs families is different. You have a lot of the same care team and specialists. You can talk for hours about splints, wheelchair straps, formulas and so much.
Friendship with an SN parent is a tricky one. You can't have your only common ground be that you have a special needs child.
There has to be more to it than that, for me at least. I have made friends with mums that I probably never would have met had it not been for our situation.
I love when you are in a waiting room at hospital and you suss out who else in the room is "one of you". It's very easy to make conversation "we have the same feeding pump bag!" is an easy segway to friendship.
Chances are you probably already spoke online on one of the forums. It's amazing.
Whatever happens in life, I just hope that Amy never ever feels lonely or excluded.
I hope that she continues to have a variety of amazing friends from all different backgrounds and that we create a new "normal".
I hope that all of her friends know how intensely lucky they are to have her in their lives and that they appreciate her and adore her even half as much as I do.
She has so much to offer and I don't want anyone to view only her limitations but the potential and amount of love she has to offer.
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