I am overwhelmingly aware at the moment that we are not alone in bringing up Rufus.
There is an African proverb that says ‘it takes a village to raise a child’. I love this proverb but I don’t think I’ve been that great in the past at acting on it. I’ve always liked to think I can raise my children by myself, thank you very much, with the help of my husband and close family. That’s what most people do, right? Friends offer help but, really, how many people actually mean it? Surely I can manage. Surely I have two very capable hands, a husband who does night feeds and nappy changes and, hey, I’m a teacher so surely I know exactly how to do this parenting lark. Right? Yes, in a way. I am blessed with two fabulous parents of my own who not only did a good job of parenting but are also doing an awesome job of grand-parenting. I have a degree in Primary Education and 8 years worth of experience in working out how children learn and what makes them click. I feel like parenting comes quite naturally to me and I love nothing more than a cuddle with a newborn or a conversation with a loopy toddler. I’m prepped, qualified and perfectly capable of doing this thing. I have layers upon layers upon layers of coping mechanisms. I’m sorted.
I know that, as a couple, we have the means to cope with what we have right now: A wild, wilful and wonderful 3 year old daughter and an almost 1.5 year old son with Angelman Syndrome, who right now, in many ways is one of the easiest nearly 1.5 year olds I know. But he comes with a label and this changes everything. We are suddenly bombarded with offers of support in various different forms and coming at us from all directions. That’s certainly how it feels and, in all honestly as a ‘coper’, it feels a bit uncomfortable.
Pre-Angelman Syndrome diagnosis, if we had wanted, we could have chosen to do this parenting thing alone in whatever way, shape or form we wanted. We could have gone to live in the middle of nowhere to do life as a family of 4… or 5… or whatever we end up being, but Rufus has changed that. I don’t mean to say Rufus has forced us into a corner and limited our options by being born with Angelman Syndrome. Instead he has brought us out into the wide open.
We have recently started receiving a whole lot of paperwork and money and a big hug from the government for having a son with Angelman Syndrome. This feels a bit weird. They don’t owe us anything. It almost feels like a sympathetic sorry-you-ended-up-with-a-faulty-one,-we-can’t-send-him-back-so-we’ll-give-you-some-compensation-instead pat on the back. Until we started filling in these forms we had no idea about any of this. You see, every local authority is legally bound to provide support in the form of respite for carers of disabled children. Of course we don’t have to accept this offer but, without boring you with a whole lot of social care duties, duties to disabled children and human rights obligations (this blog post explains it properly https://rightsinreality.wordpress.com/2014/09/15/short-breaks-for-family-carers-when-enough-is-enough/), as parents of Rufus, the law requires the state to support us.
Legally, we MUST be supported.
As a stubborn coper, this is a hard pill to swallow. As a mummy to a gorgeous, happy, chilled-out little boy, who barely cries, I sometimes find it hard to believe all this is really necessary. Right now, there are times when I feel like Rufus is ‘normal’. Then I remember the various medications he’s on, I receive a letter in the post from one of the 9 different medical professionals already involved in his little life and I am reminded that we are barely on the first rung of a very tall ladder. I fill in a form to request funding for a carer to help us look after Rufus and realise that the government doesn’t require or expect us, as a couple, to bring up Rufus on our own. Gulp.
We are not on our own.
Aside from legal requirements, the overwhelmingly big hug has come from our ‘village’. If you are in our village then, right now, we are feeling so squished by your love that we can barely breathe. We have always liked to think that we have a pretty awesome group of friends and family dotted all over the place but since Rufus and his diagnosis came on the scene it is blatantly obvious exactly where the love is. From our blog readers, to friends we have cried with, to anonymous people who have put money through our door, to people who wear our t-shirts (hubs writes pretty well too and has some awesome fundraising tees on his blog http://www.fathertoanangel.org/merch/) to people who we have befriended (whether they’ve liked it or not) so that we have someone to journey with who understands us completely, to family and friends who have held us tightly and said, sincerely, ‘You are not doing this alone’ we are feeling it. We are really feeling it. If you have cried with us or for us, if you have prayed with us or for us, if you have genuinely meant it when you have offered us help then… thank you.
As friends, you are not legally bound to support us but we know some of you are really, properly, doing it and you’re in it for the long run and we are so, so grateful. My heart is warmer, bigger and more elastic now because of you. It has taken Rufus and his diagnosis for some pretty hefty layers to break down and for me to get real with people. If you are reading this and you are someone with whom we are forming, building on or repairing friendships then we have him to thank.
From my understanding of the system, there will always be some key people in Rufus’s life, starting from now and going right up until the end. Most children fly the nest at some point, fend for themselves, create a new nest and start their own families.
Rufus will not be flying the nest.
Whether the nest is our home, partly our home and partly somewhere else and eventually, a long time in the future, somewhere where we won’t be around anymore, we know he will always need a lot of ‘looking after’ by some awesome, caring and loving people. Filling in that form to request funding for a carer to help us look after Rufus was not done lightly. I know it is the first of many forms where I will be signing over a little bit of my heart. Rufus is incredibly vulnerable, entirely dependent and completely innocent and trusting. To ‘hand him over’ into the care of someone else feels worlds away from handing my daughter over to the staff on her very first day at nursery. My hope is that only the very best, most loving, fun, silly, crazy and exceptional people are involved in caring for Rufus.
I’ll leave you with this little video.
I’m sorry if it’s difficult to watch. I’m sorry if it brings tears to your eyes. I’m sorry if it’s not pretty and it’s too real to see older children with Angelman Syndrome and the reality of what one, tiny, missing gene can do to a person’s ability to do the simplest things.
But I will not apologise for the beautiful things in this video that make me smile over and over again. The things that warm my heart. The hand holding, the hugs, the love, the support, the relationships, the smiles and the fact that this video says time and time again that we are not in this alone.
Rufus is not in this alone.
For that I am eternally grateful.