As usual, this post was triggered by someone else – a mum in my Williams Syndrome circle writing about her struggles.
My life is good. I might stretch to great on the good days. I have 3 wonderful children; I have a job I enjoy and fantastic, supportive colleagues around me; I have enough money to keep a roof over my head and food on the table; I have an amazing partner, who is my rock, and an amazing family who love and support me, always.
In the last couple of years, I have also gained a tag along; a black cloud that hovers around me. Sometimes it’s out of sight and at others it smothers me completely so I can hardly breathe.
Parents raising children with disabilities might not seem any different from you; we might walk the same path, we probably wear the same clothes and we speak the same words, but underneath we are wearing amour to face our daily battles. Our path is littered with obstacles, we are carrying different loads and our goals sometimes seem too blurry to make out. The longer we go on, the more chips our amour gains.
We have to fight for our children to have the same rights and opportunities as their peers, to be treated with respect and understanding. To immerse ourselves in understanding our children’s disability so we can educate others to understand; to support our friends with their children’s disabilities because we know it’s only us who can truly understand.
I’ve spent the last 18 months preparing for Ruben and Finn starting school (a year delayed). Chris and I have attended almost weekly appointments with professionals to ensure they would support us in our fight for a place at a mainstream school, filling in too many documents to count, and putting together a lengthy EHCP to justify why they should be educated with their peers and how we can support them to do so. Trying to stay strong when professionals tell you they should go to a specialist school, when they’ve only spent a few hours with them, when you know in your heart what is right for the children you have spent their whole lives cherishing.
We can’t wish that things were different, because we all know that won’t change anything, though we wish we could take our children’s pains away. We push down the ‘Why me?’ because it doesn’t help to ask. This role is not for the weak, though we had no choice but to accept. When your knocked down and exhausted, we have no choice but to get back up and carry on. My role as mum to twins with Williams Syndrome has already taught me so much and brought with it many blessings – I have found part of my purpose and been pushed into a very specific path, and for that I’m so thankful. Ruben and Finn are the happiest children I know and they set the world alight with their smiles. I feel such joy and thankfulness every time I watch them say “hello” (in their London accent!) to every single person who walks by; every time they cuddle someone they’ve just met or one of their many friends at childcare, because that’s their favourite thing to do; every time they comfort someone who is upset, because they truly feel empathy for them and want to make it better. They see the world as we all should; as endless opportunities for friendships and fun. I see the light shining from them as I watch them navigate the world and there is no bigger blessing.
But it also hurts when others just see that you are behind your peers, that you haven’t hit the milestones when you ‘should’. All I see is how much progress you have made; I celebrate every time you try something new, cry at every new word you learn, and praise you for trying things that I know scare you and that take so much effort for you to do.
I live with the grief of the loss of the future my boys might have had, the experience of parenting we had expected and been shown. Most parents of children with disabilities (whether from birth or later in life) experience chronic sorrow – a grief to an ongoing living loss of the opportunities we thought they might have had, the loss of a ‘normal’ future, the hardships they may face because of their disability. We feel a profound sadness that we carry with us, that is triggered by the everyday things you might take for granted – your child climbing up a slide; getting themselves dressed; taking your child swimming; going out in the sunshine; your child eating a solid meal; not having to get up in the night to give injections or medication. I have lots of worries about what the future looks like, but I shut them down because I’m only strong enough to get through a week at a time. (This is a really helpful website about chronic sorrow if this is relevant to you – http://www.chronicsorrow.org)
I’m very fortunate that I get respite a few nights a week, which makes it all manageable. I use my trips away as much needed switch off time – it allows me to refresh and come back ready for the next round. There are, of course, different challenges that come with sharing custody, but I could fill a whole website with those.
But most don’t have that freedom.
If you know a friend who is raising a disabled child or just someone whose child has additional needs, reach out and offer to look after them for a few hours. The offers are usually very few and they are often too afraid to ask as they know how challenging it can be and don’t want to be a burden to others – just another weight they carry around. I know we all have our commitments and time restraints, but what a huge meaning it will have to that person and their family. Call me if you need me!