A Time to Write

Time to write is a rare treat that is long overdue for me. Orla turns 9 today and as a result I have been feeling an incoming wave of emotion. The urge to reflect, express and hopefully find some release is strong.

It is over 2 years since I last found the time to write more than notes that end up collecting in my diary amongst appointment reminders or the like. Life is busy. Busier than ever in fact because in that time we have welcomed another member into the family. Baby George, ‘the pup’ as he is affectionately called, is now 16 months old.

Orla is doing well but 2020 has been a different year for everyone world-wide.

Covid and the consequent abrupt initial lockdown was extremely hard for Orla. Her paedatrician was immediately very supportive and after numerous phone consultations we felt the best thing was to medicate Orla to help relieve some of her distress. I did find the time to inform our state minister for Education of situations like ours and just how difficult or impossible home schooling was during the first Australian lockdown. Luckily others did the same, and the government listened, so students with disabilities are currently now able to attend their specialty schools despite quite strict lockdown measures currently happening in Melbourne.

Last time I wrote, Orla had just undergone surgery for carpel tunnel and to lengthen her calf muscles. Both were successful as far as we know but I’m not convinced she has full feeling in her left hand still. And although her calf muscle lengthening seems to have helped a little, there are problematic bony changes in her feet which can only be helped by surgery. There is also a high chance her hips will also require surgery to help in avoiding pain later in life. She attended an appointment this week at the gait lab where video footage was gathered to access her walking with and without her orthotics so the orthopaedic surgeons can then discuss and we can decide on the best approach.  We only hope now that the girl who spent so long trying and achieved the ability to walk will not have that taken away from her in the future.

The covid restrictions have really exacerbated Orla’s struggles. It is enough that everyday she potentially feels pain she can’t explain, but now she can’t ask or potentially understand things such as ‘Why can’t I go to horse riding?’ ‘Why hasn’t my grandmother been to see us?’ ‘Why can’t I go to the pool anymore?’ And we don’t feel sure what she doesn’t understand.

I am devastated by the effect on her brain. I have learnt to live with it, learnt to make the best of it, I approach it with optimism mostly and I appreciate what we have for sure, but still I remain devastated. I feel that maybe today, on her birthday, I can fully acknowledge and let myself feel that devastation.

I am giving myself permission to reflect on her birth and the journey it sent us on. To feel the grief and the loss of what her life, our lives should have been. I am so sad that the blessed ignorance of childhood was stolen from her, that she was not fortunate enough to be able to flourish in the usual childhood ways with the freedom to run, to skip, to laugh and to play in the normal or should I say typical way.

I see Orla as the person she should have been, someone who had a perfectly good brain but who fell victim to a terrible stroke of luck, in the way that any person might be inflicted by some disease or accident or trauma that tears away the person you once were or should be. The difference is that Ora’s personality, her humour, her strengths and her weaknesses are only hinted at, are clouded by the damage to her brain and have never really been truly known.

Perhaps, because it’s her birthday, I could direct a few words to Orla herself…

If I could have one thing, other than the obvious wish to avoid this condition altogether, I would ask to have the real you for just a week. I could confidently understand your likes and dislikes and the reasons behind them. Your preferences, your nuance, your humour, sarcasm, the thousands of things you’re thinking and all the things you want to tell me. Everything about you free of the mask of your condition.

I didn’t understand what a diagnosis really meant when I first started this blog, I referred to the physical effects we had seen and would expect to see. We made sure we knew as much about the bone marrow transplant as we could. We read up and braced ourselves and made it through the tumultuous storm that it was. We asked in the room the day you were diagnosed whether you would be able to go to school. We we were told yes you would, with assistance.

What we weren’t told because there was no way to know the school would be for those with severe learning difficulties. That you wouldn’t be able to speak to us with your voice, that we would use the terms ‘non-verbal’ and ‘autistic’ when describing you to professionals. That you would develop self-harming behaviours, that you would bite me and demand from me in a way most parents will never be able to relate.

We weren’t told that you would spend the next few years attending therapy after therapy to achieve small progress, that I would celebrate that small progress in big ways. I didn’t know you wouldn’t want or couldn’t feel the power of friendships or lust or romantic love or equally understand just how much you are loved.

Life can be hard, Orla, but my emotions are for you and the life you missed out on. It is not that I don’t respect the life you do have and I see you flourish in your way everyday and I admire your resilience beyond words but I simply wish that it was not like this.

As I kiss you while you are sleeping each night, I am full of love. You and this journey has taught me so much, made me find love and strength in the deepest part of my being that I would otherwise have never known.

Happy birthday, my special girl.