When People who "Get Us" Come and Go

People are transient. Through our life with Amy I have made probably more connections in the last 7 years than I had made in my entire life prior to that. I can’t leave the house without bumping into someone who knows me via Amy. Sometimes I don’t even recognise that person and have an internal panic. Not only does she have a massive team of specialists, staff and experts - people are fleeting.

People get new jobs, people retire, people move away to new areas. My child gets past a certain age, she moves onto a team for her age group. I’ve met people who remember us from years ago who claim that meeting us inspired them to go into the job they go into. It’s amazing how these chance encounters can alter the trajectory of someone's life.

One of the things I grapple most with, is my emotional attachment to those who make a real difference to us.

You know in your heart when someone cares as in really cares. They don’t just care because they are paid to, but because they are human like you, and they like you and your child as a person and want to see you all thrive. Those people become indispensable to you. The shame for those indispensable people is that it puts a lot of pressure on them. They become your go to person and thus increase their own workload by virtue of being helpful. It also impacts that professional barrier that has to be kept up. If that barrier comes down and emotions get involved, it can complicate things.

It’s hard working so closely with people for so long without starting to feel like they are extended family. It’s a really hard line to draw. It’s only natural that you become like colleagues or friends.

Amy has just been in the same class at school for two years. In September she moves onto another class. Today I find myself emotional as it means a team of at least 7 people will no longer feature in her everyday routine. It’s 7 people that understand her. It can take a lot of time to understand families like ours. Amy is non verbal, but if you spend enough time with her getting to know her, she has so much to offer. She has so many non verbal cues that you will only pick up on from knowing her for a long time. So to me, people who have been with her for a long time are really important to us. It's an anxious time for any parent when their child starts a new class or a new school. I remember as a child those nerves in my belly on the first day back. "who will my teacher be? will they be kind? will they understand me?". I feel butterflies in my stomach even thinking about it.

When we had to change pediatrician as ours was moving to another hospital - I thought my world was collapsing. I felt as if the rug had been pulled from under my feet. Our doctor had been there since day 1. I remember our earliest discussions. “What if she never cries? How will I know what’s wrong?” I remember her asking me what concerns I had about going home. This was at a time I thought we may never be going home. She helped us in more ways than she could ever know. She guided us and taught me so much. She listened as she really listened. If there was a different treatment I wanted to try she didn't do what some doctors do and shrug it off, she would discuss with colleagues, read the studies I sent her, and we would plan it together. So you can imagine my shock when she left.

I had that sick feeling in my stomach. Who will our next doctor be? Will they know Amy?

Experienced as they may be, they weren’t there from day 1. It’s so draining having to explain yourself and your child over and over again. Anyone who has had as many hospital admissions as us will know that feeling when they ask “what medications are they on?” “can you give me a brief history of Amy” and so on. You know as well that during an admission you’ll have this exact conversation at least 3 times a day. You know they’re just doing their job but wow, talk about groundhog day. (Thankfully at our local hospital some of the team run through this stuff quickly as they know us well!)

All of this anxiety I feel stems from that feeling of “what will happen if I’m not here one day?”. I don’t want Amy to be here without us being confused as to why she has been “abandoned” and why suddenly there is no one around who can understand her. It’s the sort of thing that if I think about it too much I can send myself into a panic attack. I am working hard to accept that so many people will come and go and that nothing is permanent. I have to hope that those who do care and do stay, keep investing that time and patience into us and that they know just how important to us they are. I hope that Amy never ever feels lonely, and I hope that she feels more and more understood as she learns and grows. I hope she knows how valid, loved and important she is and that there are always people around who reinforce this to her. She has been through so much and plods on with a determined ferocity everyday, I could not be prouder if I tried.

There are still people from 6 years ago I think about daily and the impact they made on our lives.

I feel grief and sadness that they are gone, but also grateful for their time and experience. What may have been only a fleeting microcosm of their vast career might be something that to this day is giving someone somewhere else strength today still.

I often joke about enjoying being a bit of a loner and a homebody. But the truth is we all need connections and friendships. When you’re a parent carer you are sort of forced into a more isolated way of being. I no longer walk into an office of hundreds of familiar faces each morning. I no longer chat and laugh around the coffee machine with colleagues. I no longer attend team meetings and cringe at ice breakers. I often stand alone at my coffee machine thinking of those simpler times, knowing that my next conversation will likely be with carers, physio, teachers, doctors, etc. I read about Amy’s day at school hanging onto every word knowing that she can’t tell me about her day. I keep refreshing the app desperate to know that she had a settled or happy day.

I wait eagerly for Phil to come home from work, a bit like a pet really. This of course will change as Amy breaks up from school today - So I’ll be plenty busy!

It’s often nice being surrounded by people whose normal life revolves around all the same stuff as us. You can talk without explanation about medical issues or equipment. You’re not speaking a foreign language, you’re not a novelty. Sometimes though I feel compelled to break away from that and prove to everyone out there how actually we are just like them and that the world needs to learn to understand my child. I shouldn’t be feverishly clinging onto people who understand her, more work needs to be done to include and understand people of all abilities. Sometimes I need to pull away the safety net and not assume that people are either unkind or don’t understand.

I half joke half don't constantly with people "you can't ever leave us!! I'll lock you in!" if i even get a hint that they may be planning to change job. It's just another facet of our life that we have no control over. It's never personal when someone moves on, but it's hard. People are allowed to retire, to move on, to have their own lives! But it doesn't make it any easier. In the last year we have said goodbye to so many people who have known Amy since she was around 10 months old. Sure, we'll see them around still, and I wish them all the best, but I do miss them and I'm sure Amy does too. So long did we spend teaching Amy those people's names whilst they form tgheir own unique bond with her.

So to anyone who works with families like ours and cares - we see you and we are grateful. I know we aren’t always the easiest to work with. Our highs are high, but our lows are also very low. It can be so exhausting.

I know you feel our frustrations at so many things. I know that it impacts you too when things are bad. I know that you desperately seek change in the system to help families like ours. I know that sometimes you feel powerless to help one minute, and determined the next. We go through that daily too. I know that you must jump the same hurdles as us, be bound by the same red tape as us. I know that when you clock off for the day you don’t necessarily switch off. You probably ruminate just as much as us, going in circles over it all. Thank you for being with us, for however long that may be.