To those who have worked with or work with my daughter with complex medical needs.
I never wanted to meet you. In fact, prior to having our daughter, I likely had no idea your particular profession existed. Or if I did know, I probably naively presumed that it was never something that would be relevant in our lives. Yet now, I have a tremendous admiration, gratitude, and respect for you. Thank you for choosing to make your life’s work about maintaining and/or improving the quality of life of my amazing little girl.
I am guessing in your line of work you deal with budget restraints, being overworked, long clinic hours, long waiting lists, vast amounts of admin, probably even people being verbally, maybe even physically abusive towards you. You will see and hear some heartbreaking things. You’ll have your ethical, moral and political views in a permanent state of turmoil as you watch how the system can so often fail families like ours.
You’ll probably feel moments of immense pride and joy when you see things go right, when you see a family get that adapted house they so desperately needed for so long, or when that child’s surgery is a success and makes life much nicer for them. It must be hard when you get home to switch off from all of that, and I know that because I’ve seen the intensity that comes with being a parent to a child with complex needs. It’s 24/7.
You’re working with a community of parents that are both huge experts, but equally overwhelmed and at your mercy.
You may think we are difficult, pedantic, impatient, bossy, neurotic, forgetful, over emotional. We likely are. But this is no reflection on you. We may not always be the easiest to work with, but actually it isn’t easy living our lives in a fishbowl for all to see. It’s hard. We deal with some deep stuff, and on a daily basis.
We can tell when you are working WITH us. We don’t want to work against you, we don’t want you to work FOR us.. We want to work as a team with a combined mutual interest in helping our child live the best life possible. We can tell when you are doing this and I am always grateful for it. Being listened to is so important to us, we know when we are being dismissed, or lied to, or if a decision was pre made without our involvement. We need inclusion as much as our children do. You’re our lifeline.
If you’re spending time alone with my child, I love a good handover. Amy can’t tell me about her day. Sometimes I wish she was wearing a secret camera. Just so I can see how her life looks when I’m not there. So I can see all interactions, challenges, and special moments. I know it must be tiring giving constant feedback, but you’re acting on behalf of my child and it means a lot to us to know how their day was. If they liked a certain song. If they had a nap. If they had any discomfort.
There are certain people that I have met over the last 6 years that I can’t bear the thought of not being in our lives.
They are a vital cog in the overall system of our lives. If they are missing, the replacement might be nowhere near as good.
It has been a strange learning curve for me… being ultimately forced to have a large team of people being so heavily involved in yours and your child’s life. Some of these people feel like a friend – but they aren’t a friend as there is a professional barrier there. And it’s a strange and delicate balance.
We recently got a new pediatrician. Initially I felt like my world had fallen apart. The news hit me out of nowhere. This is a person that has known my child since day 1. Every single that has happened in her life, this person has overseen this and felt like my stability guiding me through it. Obviously people change jobs, people move on. But for me it is hard to accept.
If someone gets to know my daughter, and they understand her and everything she has endured and overcome – I never want them to leave our lives. Not enough of the world understands disability, or complex health needs. To these people in our lives, we are normal to them. And they are our normal. And when that normality goes it can be a shock to the system.
I am the same if a carer leaves, or a nurse we really like and so on. They mean so much to us.
There was a person in Amy’s life near the start that if I had any issue she would listen (important!), take the details, offer me a drink (didn’t need to ask how I had it) and would go and help fight our corner.
They were one of a few people I felt I could reach out to at a time of feeling overwhelmed or vulnerable and know that they would only bring positivity and calmness to the situation. I hope that these people know how eternally grateful I am and that in the midst of all of their chaos that their field of work brings – what they do matters and does make an impact.
More recently, someone I admire has retired. For months I have joked “you can’t leave us” whilst internally thinking “no really.. Please… don’t leave us. You’re special to us, you’re not like some of the other people we have dealt with, you really do care and you GET us…”
We used to have portage come round. (for those who don’t know, portage are a home visiting educational system, they work with children through play.) Our portage person retired but I will never forget them. One of the first things she said to me was “we look at what the child CAN do, not what they can’t”. And “If you judged me on my ability to speak Mandarin, you wouldn’t think me very intelligent… you need to look at what someone is passionate about and likes and work with that”.
From thereon that sealed my belief that you ALWAYS assume competence. If someone has a physical disability and is non verbal you DO NOT write them off. She reinforced a lot of what I wanted to to believe and made it truer for me.
We had a nurse on the neonatal ward that told me to never stop speaking to Amy. At this time Amy was presumed blind and deaf. She told me never to give up. And that she would feel my love even if she couldn’t hear it. I think about that everyday. I get emotional thinking about it. Amy actually can hear – but I still firmly believe that no matter what her outcome had been, we were going to make her know how loved she is and how much she matters.
We have someone on our team now who says “how are you? And I don’t want the stock answer” because she knows that often us parents are overwhelmed, fed up, tired. She actually cares. And you can’t teach that. These people are real treasures. She knows I will say I’m fine even if I’m not. She’s probably seen it 100 times before and can see it in our eyes.
Often in life I can feel totally out of control. Not knowing just how “life limited” or “life threatened” Amy might be.
Not knowing if today will be seizures and tantrums, or laughter and joy. It should never be the responsibility of these people to be our stability, and I am learning that change is inevitable in every aspect of life. But I just wanted to make this post to let all people such as: carers, physiotherapists, speech and language, dieticians, nurses, complex needs co-ordinators, teachers, teaching assistants, school nurses, pediatricians, junior doctors, nurses, cleaners, secretaries, surgeons, sensory support workers, occupational therapists, delivery drivers, warehouse workers for our supplies, everyone – we see you, and we are so grateful.