Comparison: a consideration or estimate of the similarities or dissimilarities between two things or people.
Comparisonitis : the inability to stop considering the similarities or dissimilarities between two things or people.
I’ve heard it said many times that comparison is the thief of joy. You spend so much time comparing yourself to others that you miss out on the joy that comes from being in your own life
You might think it would be able bodied children and their parents who I would compare our family to and don’t get me wrong I do think about the dissimilarities between Lyla and other little girls her age, but these are passing moments which, while they cut deep, are thankfully fleeting. I move my mind on from them quickly and try not to dwell on things which are painful and unchangeable. Instead my comparisonitis focusses itself on other parents of kids with complex disabilities.
While I know there is no magic cure for Lyla’s brain disorder, no magic therapy or pill that would take it all away but what if I look back and there was something I could have done for her that would have helped her be more independent or be able to live the life she wants. It’s my job as a parent to make sure she grows up loved, happy and with good self esteem but also to make sure I do everything to give her the life she deserves to have.
There are many families who travel to London or LA for intensive therapy sessions lasting three weeks. Parents who do so much more therapy at home with their kids. Parents who have travelled across the world for stem cell therapy. Parents who are awesome at modelling Alternative Accessible Communication like Lyla’s PODD and see fantastic results.
Just a word about results, in the world of kids like Lyla, they aren’t usually as dramatic or as huge as ‘she learnt to walk/sit up/feed herself’. Instead they are more like, ‘she tried to blow bubbles/managed to use her book to tell us she was hungry/gave her doll a cuddle’. I call them inch stones rather than milestones, smaller but just just as important and just as special.
I’m not doing enough. I know it sounds ridiculous. We travel to another goddamn country every two months to see a therapist, we’ve been to music therapy, feldenkrais therapy, horse riding therapy, hydrotherapy, physiotherapy, ABR, adapted dance classes, we spent two years travelling across Melbourne for 7 hours of therapy a week, I am doing an 8 month long course on how to advocate more effectively for Lyla, we organised a massive fundraiser to pay for her therapy and equipment – but there is always a thought in the back of my mind that I could or should be doing more.
I should be doing more. However I know that going away for 3 weeks to London or to Panama for stem cell therapy wouldn’t be right for our family, for a start it would bankrupt us plus it would be too hard on Blair and he needs to be considered too, I know all this but still that guilt is ever present. Mum guilt is crap at the best of times but when I am feeling bad for not pulling out Lyla’s PODD book at every opportunity or for not putting her in her standing frame often enough or not reading enough about neuroplasticity, it’s somehow worse because the potential to fail Lyla is so very real.
Lyla is a little girl with extremely complex physical needs and I don’t know what the right answers are to do what is best for her so I am just doing the best I can and trying not to compare what we do to what other parents do. I try to remember that at the centre of it all is a smart and funny 5 year old girl who wants to play with her friends and just be 5. It can’t all be about therapy and appointments, this fortnight alone we have one day where she doesn’t have any appointments. The rest is filled with nursery, physio, hydrotherapy, neurologist and surgeon visits, orthotics, speech and language, genetics. Aside from all that she needs time to just be.
I have to do my best to keep the comparisonitis at bay so that it doesn’t impact on Lyla’s already full diary or her time to just be a 5 year old girl.