I will preface the following by saying that most days are ok, most days I can cope and most of the time I focus, or try to, on the now, today, this week and the immediate future. I also know how much worse it could be, because for all Harper’s complications we aren’t in the RVI hooked up to machines wondering if she will survive this ordeal, she is healthy and thriving and I am grateful for that. I am determined – most of the time – not to let our situation with our daughter get me down.
But occasionally it creeps up on me, it catches me completely unawares and I feel like I am just going to shatter. Some days I have the realisation that the trajectory of her development feels like nothing more than a painfully slow incline that will continue until an unknown conclusion. Though her physical development has increased markedly in the last few months (she is now crawling, pulling herself up, scaling some furniture, which is a millions miles away from the child who could only lie on her back a year ago) the unknown still looms.
I am celebrating those facts, I can say: “my two and a half year old is crawling…” which is just amazing but I can’t say “my daughter can tell what she wants” and I can’t say when that will be clear. The experts have no answers, only guesses, and won’t commit to an idea of her future for fear that they are wrong. Last week I was told by one of her neurology team that the sensory feedback seeking behaviour she has been doing with increasing zeal (finding sharp corners to repeatedly bang her head against is just the latest in a long list of disturbing behaviours) is an indication that she might possibly be autistic, to add to the epilepsy and severe global developmental delay that she already has going on.
This is not something any parent wants to hear but at least there may be a course of action that we can take that will help lessen these behaviours. I felt a weird mix of panic and relief when he said it, at once feeling that someone was finally listening to my concerns but also fear of what this means for her future. Such is the nature of caring for a child with additional needs and a complex and rare condition: there’s new information to process all the time and it’s never easy to digest.
At least, though, I felt like this might be an answer as to why she sits and repeatedly pulls chunks of her own hair out before I can grab her hand away from her poor, retreating hairline…it’s painful to watch, at least we might now be able to find some way of combating it. In conversation with a dear and close friend, she said empathetically that she can’t imagine how this must feel, that this is really a nightmare scenario for a parent. Which, of course, it is. She backtracked later, as always so worried that she might have said the wrong thing… for me there is no wrong thing that can be said: she’s there for me, unfaltering in her support and understanding, trying to see things from my perspective and ever gentle in her approach. I’m spoilt with a number of wonderful women in my life who have been there to offer such support and without whom I would be more of a wreck than I am. It is a parent’s worst nightmare. She added, though, that she wouldn’t wish Harper was any different, that she is obviously wonderful in her own way, which was welcome and lovely however I do wish she was different. I want her to be the version of herself that I imagined when I scooped her out of the water of the birthing pool overwhelmed and thrilled at having had a girl. I want her to be the version with the full and bright future, I want to see the bond between us and the relationship she would have with her older brother. I want her to be the version of a two and a half year old that my friends get to experience with their own kids, with all the temper tantrums, potty training, curiosity and joy. I can still see some of that but it’s not the version of reality that I want for her, or, selfishly, for me… I have come to realise that I’m living with a kind of grief, mourning the child I thought I would have, catching glimpses of it but never getting to hold on.
Having a child with additional needs, having a child who is undiagnosed, having a child who’s future is completely unknown is the scariest thing I have ever known. For some the future is known and that is also scary; for some things change unexpectedly – this is not a life, after all, that we can control and map out. But to have some idea of when this really tough bit of parenting – the selfless care, the watching out for sharp corners, the wiping, the carrying, the feeding, the monotonous daily grind of flashing toys – will finally be done so we can move on to the next chapter, to communication, reciprocal hugs, and an understanding of what the fuck is going on…when do we get that? I love spending time with her; she has the most wonderful smile and can be so active now that I forget how things were. I don’t want to spend all my time looking forward to things that may never be but having a child who can only interact with you on a certain level, who doesn’t show interest in books or the beach or teddy bears or blocks or seem to care where we are, is exhausting. I know that with a ‘typical’ child these moments aren’t without their stress but I can’t see a time when I will be able to engage her fully, to really connect on a level beyond just splashing in some water. But maybe that’s all there is, for her that is what makes her smile and I am so very happy that she is happy. That should be enough. But it isn’t, it’s monotonous and worrying and I feel so wholly selfish but I want so much more for her. I am grateful that she is gaining in physical ability, but with it is a frustration, hers and mine, that she can’t communicate what she needs. We are almost reaching toddler tantrums (and I know there isn’t always any reason for them) but I can’t even begin to guess what is wrong. It makes me feel redundant and like I can’t help her.
I feel like she’s in a jar I can’t open; behind some one way glass and can’t see life beyond it; in a snow globe looking serene in a cascade of snowflakes but no way of communicating her pain or needs or ever understanding them.. It’s so painfully dull looking after someone who can’t thank you, like those early moments of motherhood when it’s a good thing they are so damn cute because all they do is eat, sleep, shit and scream… oh how they scream. Like you are grappling with this idea of a person but can’t quite see them yet, you know they will emerge some day only, like in the film, Groundhog Day, the next day never comes and you are stuck in an endless loop of hoping things will change. When will I wake up and finally get to experience what comes next?