For a while I’ve blogged about having a disabled child (or 2). These thoughts and ramblings are just my own. Everyone approaches things differently and has varying feelings and emotions in similar circumstances. Disability knows no prejudice – it will affect people from different walks of life, race, religion and age. In a similar way, the way people react is different. There is no rule book or instruction manual. The ability to cope with life when disability touches you can never be generalised. One thing though that generally people share, is that there are good days and bad days – and days when you feel the stuffing (no festive timing pun intended there) has been knocked out of you.
There are great days when you feel you are floating on a tide of elation, when things are going well – or at least you haven’t had any really crap news/results recently.
There are days of status quo when things are (sometimes unnervingly) calm. I sometimes get twitchy in these periods of calm and wonder when the storm will arrive. Sometimes that storm is a rough one, sometimes it’s just a suggestion of a storm and more of a rain cloud, which is there just to remind me that nature’s in charge. Mother Nature remains a body of power I have an existing love/hate relationship with and one whom I respect, but based on past experience, do not fully trust.
Then there are the days which totally suck. When you feel you could pull a ‘duvet day’, to hide from the world and what you have to face, but you realise you can’t as you have little people that rely on you, more than the average little people of the same age, because of the drugs, hoisting, appts and all the ‘stuff’. These days are when you cry into your weetabix when you least expect it. When everything just seems to be really hard or very scary. Maybe it’s a medical decision you need to consider or someone has passed comment about your situation, which may or may not have been intended to upset you. Maybe you have had to battle for your baby/ies more than normal. (And normal is hard enough). Maybe you’ve seen the passing of another family’s little one, when you know that could have easily been yours. Maybe your heart is hurting a little more than normal, just because you wish things were different. Maybe there’s no trigger, other than life is just hard some days.
This week, I came across another type of ‘day’. Not ‘good’, not ‘ok’ and not ‘bad’. It wasn’t a great day, it certainly wasn’t an average quiet one, but it also wasn’t awful.
It was the day when I found peace.
Since Reuben was born, there have been questions over why he has the disability he does. Questions over what was the exact reason he suffered brain damage as he did. This wasn’t the almighty ‘Why Him’ question that only a parent can ask, a sort of rhetorical question that only the emotion of a grieving parent for their healthy baby can pose. This was an actual scientific enquiry of a question that has taken years to finally understand. Some people close to me knew we were exploring this, but most didn’t. It was private as, as his parents, we needed to do this in the correct way, so to reach the honest and accurate answers.
Already, Reuben has started to notice he is different to other children of his age. I have already had to deal with ‘Mummy, why don’t my legs work?’ earlier than I expected. This enquiry and systematic way to find out exactly why that is, was important.
This was important for one reason and one reason only – so Reuben himself could know what happened to him and why. I will always be his advocate, his closest ally and caregiver as he grows, but he has a right when he is older to have the answers to why he needs those things. Essentially, why he has wheels as we have legs; why life is a bit trickier for him than his peers. We set out to understand it and get the hard facts to answer possibly the hardest and most hurtful question of my own life. One which I never expected to deal with but one I manned up and faced. Not for anyone else in the world, but for the centre of my world. For Reuben.
It took a long time. Essentially this meant that for a long while, I was unsure of why we lived the life we do. For years, not knowing if life could have been different if he had been born a different day, on a different hospital shift, in a different unit. Could his life have been different and all of this heartache avoided…was this an act of human error or just the roll of life’s natural but very cruel dice.
I was in limbo land not knowing, only sure that I needed to have the accurate facts to move forward, to be able to look him in the eye when he is ready to know.
So that’s what we did. We found out. I made it my personal mission as his mother to get this for him. To understand. To never be in quandary about the why’s.
It was looked at in its’ finest detail, and when I had the meeting to learn the results of the enquiry, my limbo land stopped. I listened and I learned and I came to a state of peace. A peace I have never had since the minute he was diagnosed on 6th December 2009, at 12 Midday. That day tore my heart apart, and on 26th November 2015 it started to heal.
Ironically, these answers were given to me on their 6th birthday. Back in London, 6 years to the day of his birth, I learned that (for whatever reasoning of the higher powers..), this was Reuben’s destiny. This was the way he was meant to be. No person was to blame, nothing would have been different in a different place or time. Prematurity was the culprit here. Prematurity took his independence and made his life as it is, nothing more.
The understanding of why ‘bad things’ happen will never be understood, but I never set out to find out the answers to the universe and its’ ways. I just needed to know this was no one’s fault. And it wasn’t. I suppose there is always going to be my own personal guilt that my body failed them both, that I couldn’t stay pregnant longer and keep them safe. But that’s my own mind battles.
Ultimately, this is what I would have chosen the answer to be, should I have dared to consider an outcome. My worst fear would be that that someone did this, that it was an act of negligence or an accident. For then I know full well I would have started to imagine him as if that hadn’t happened. Imagining him running in the playground or sat on the floor playing. It wasn’t someone’s fault – this was Mother Nature, working her ways. This was Reuben’s life being mapped out at the start, and now I know this was how his life was to be, I’m finally at peace with it. That may be a strange concept for some, but you have to have closure on the past to move forward into the future. I’m not saying it’s ok, it’s far from ok. But that magic wand never materialised despite my deepest yearning for it. Although in so many ways, I will always grieve for what should have been, I now feel I can close that book, as this was how Reuben was meant to be; and he’s fabulous.
He is my beautiful boy. I now know why he is built as he is. I can wake up each day for however long I have him, and know I personally sought his right to the answers to his future questions. When the time comes and only when the time is right, we will have that conversation. No doubt there will be tears, no doubt he will experience many emotions as he grows and learns why he is who he is. I am at peace with it and I will help him to reach that peace too. Until then, and forever after then, I will stand by his side and arm him with self esteem, laughter, joy and love. I will teach him to love himself like I love him. I will make sure he is proud of himself. I will make sure disability never stands in his way and his life is fulfilled. Prematurity gave him a different destiny to most, but we have so much to be grateful for and a life ahead to enjoy and to cherish. We can’t look back, as we aren’t going that way….
So now we know. It’s ok. Will I promise never to cry into my weetabix or sob in Tesco’s car park again? No, I probably will do. (In fact I guarantee I will). But now I can do those things with a deeper level of understanding.
My findings don’t change anything apart from making things better actually. I’m more calm and peaceful with our lot. Whatever the next chapters bring, we’re ready for it. Never before did a Billy Joel lyric resonate in my life until now, but ‘I couldn’t love you any better, I love you just the way you are’. That’s just how it is.