D-Day Anniversary: Halloween Eve

Photo Credit: Jenny Proctor

I originally wrote this blogpost exactly two years after Rufus’s diagnosis date (2014). I remember the date well because it was Halloween Eve: The day before the rest of the world was preparing to dress up and decorate their houses to scare each other and we had our very own, very real fears to contend with. It’s no wonder we don’t really celebrate Halloween in our family. Five years on from writing this, I feel exactly the same as I did back then. Below you will find my thoughts on fear, inconvenience, choice and privilege in raising a child with profound and complex special needs.

This time two years ago, we sat down with freshly brewed cups of tea in our tiny front room in Moss Side with Rufus's paediatrician and his physiotherapist to be told the news we both expected and dreaded in equal measure. Our perfect 1 year old boy has Angelman Syndrome. We were handed a letter from the Genomic Diagnostics Laboratory which explained that he has 'Chromosome 15q11q13 Deletion consistent with Angelman Syndrome' (with a whole load of other letters and numbers afterwards).  There it was in black and white for us to see. We had spent the last month leading up to the appointment researching Angelman Syndrome online as we suspected it due to a couple of clues given to us at previous medical appointments (see my first ever blog post Mothering An Angel for the clues). Still, there's quite a difference between suspecting something and being told it in no uncertain terms by someone official holding a letter spelling it out good and proper.

I remember the date well because I remember thinking about the irony that the rest of the country was getting ready for Halloween the very next day, preparing to dress up and celebrate pretend horror and fear, when we had our own very real horror and fear to contend with. I'm not one to dwell on dates and special days (I just about remember anniversaries and birthdays) but I felt it was important to bring this one to the fore this year.

A few weeks ago my foundations were a little shakier than usual after watching a BBC documentary by actress Sally Phillips about the potential screening out of Down's Syndrome and the documentary touched on the screening out of other genetic abnormalities, posing the question: Is this the kind of world we want to live in? For me, the answer is simple and takes no time to consider: No.

Here's why. Rufus is very much alive and kicking and our world is richer for him being in it. This, I am certain of.

All parents-to-be in this country are offered a screening to find out if their child has Down's Syndrome while they are pregnant and when the results come in that is their Diagnosis Day (or potential Diagnosis Day depending on whether they opt for amniocentisis). For many of these almost-parents, Diagnosis Day never turns into Diagnosis 2nd Year Anniversary because they make the decision never to get to that point.

Watching that documentary made me feel so sad that the world I am raising my precious boy in is even having this discussion about the worth and value of people like him. It made me sad that there is a very real chance that people with Angelman Syndrome may well be 'screened out' in the future. The statistics for Down's Syndrome terminations are shocking right now and will potentially get worse. I tried so hard after watching the documentary to figure out why people would go ahead with a Down's Syndrome termination and the only two reasons I could come up with were fear and inconvenience.

Fear of the unknown and the inconvenience a special needs child may be to an otherwise perfect (yeah, right) parental existence.

After diagnosis, it took us both a while to integrate back into the real world, into our friendship groups and social circles and we were constantly asked the question, "How are you doing, I mean really doing?". People were great, they listened, they cared, they wanted to know how to help and what they could do for us. Many people in our lives still are utterly incredible and care about our little family more than is humanly possible. But we're not asked that question quite so much now. The assumption is that two years into it we should be generally doing pretty okay most of the time. But here's the thing, fear and inconvenience... I'm going to be honest.... they're both there.

The fear comes mainly at night, after the middle of the night wake ups when I can't get back to sleep and I find myself thinking about things like special schools, wheelchairs, changing nappies forever, changing nappies when we are out and about and he's too big for a baby change, seizures, sleep deprivation, unidentifiable illness, when will the hair pulling stop, what will I do when people don't think he's cute anymore, how will I lift him when he's bigger than me, will he ever climb the stairs, what if we can't build a downstairs bedroom and bathroom for him, who will care for him when I'm too old, how will I care for him when I'm old, who will look after him when I die, how will they ever know him like I know him... the list goes on. These are the fears.

The inconvenience... well, in all honesty it's bloody hard work raising Rufus. He can't talk, he can't walk, he can't feed himself unaided, he's incontinent, he can't dress himself, he has no concept of danger, he doesn't put his hands out if he falls, he pulls my hair and glasses when I hold him, he's a dead weight when I lift him, he puts everything in his mouth, he grabs other children, he ruins games, he wakes at night and doesn't always go back to sleep, he can't play independently for a decent length of time... the list goes on. These are just some of the inconveniences.

But I have a choice. And it's a daily choice. Do I let the fear own me and the inconveniences be the way that I look at him and think of him? Or do I park the fears to one side and focus on the privileges in raising Rufus? Thankfully, I choose the latter everyday but it's important to say here that I make those deliberate choices multiple times a day and I don't make them lightly. I battle with the fears and tell them to do one when they keep me awake at night and I see the inconveniences all day, every day but we live in a world which is just not set up to make our lives easy so maybe the real inconvenience here is the world we live in, not Rufus... there's another blog post I think.

And choice is great. Choice is wonderful. But every day, parents-to-be are making the choice to give life or take life away. Personally, it's not a choice I could make but I think to make it because you are afraid of what the future will hold or quite how badly a disabled child could inconvenience your perfect picture of parenthood is just not good enough. Because anything could happen, right? At any point on the parenting journey anything could happen.

So, two years down the line how are we doing? I mean really doing?

Well, just look at him. He's a beauty and it is an utter privilege to be his mummy and to share him with my wonderful world of friends and family who truly get him. I watch him adore people with his excited bum-shuffle and show-stopping grin and give them a loving cuddle that's so intense it hurts then I watch them go back for more and struggle to pull themselves away from him (sometimes it's genuinely because he's got hold of their hair but I like to tell myself it's because they adore him so darn much). I love the smiles he brings out in hurting people and the strangers who are weirded out by the fact that he bursts into laughter at the sight of them (usually old men with glasses - bearded old men with glasses are THE BEST). I love the way he is completely smitten with me and his Dad and that we are better than any toy, any snack, any TV show... and we always will be. Being the very best thing in your child's world is a really, really hard thing to beat. I love the fact that he has the ability to just slow life right down by reminding me that being in the presence of another human being and sharing a moment together is what it's all about. Who needs mindfulness when you've got Rufus? I love that we are not doing this alone and this is the most important thing. As soon as we began to let people into our post-diagnosis world, to answer the question in honesty (often with tears and snot) the fear lessened and the inconvenience lightened. We are getting better at it but it's still sometimes hard to share... and I mean really share the burden. But I know that in sharing the burden with friends and family who are worth their weight in gold, they get to share the joy and privilege of experiencing Rufus in their lives.

So as I polish off my millionth post-diagnosis cup of tea, I can honestly say our lives are richer, bigger, better, fuller and overwhelmed with love and adoration from our precious little boy. Fear and inconvenience? Yep, they're there, somewhere in the background, as I guess they are for all of us at some point, but they're not winning anymore. They never will.