Neurology Questions: Is there a range of conditions that we are looking at since she is symptomatically aligned with Angelman’s-like syndromes?
Does her spontaneous laughing indicate that she could have one of these conditions? Impossible to answer, but is there a spectrum that we are looking at in terms of her future possible learning disabilities, now that she is a little older?
Are there similar cases that have a wide range of outcomes or is there an area we can expect to find ourselves in?
Is the fact that she has gained significantly in both her physical ability and interaction with those around her grounds to think that she could go on to have less issues than we originally thought?
When would you expect to see an improvement in communication?
When does this get easier?
When will my kids play together?
When will she say mama?
When will she say thank you?
When will she say anything?
Dear Harper, I am beginning to compile a list of questions for your paediatric neurologist to ask when we see him next month. Most of these questions, I know, will remain unanswered. Your brain is unique; it has a unique set of problems that we are trying to uncover to see if we can begin to put together a picture of your future. You might read this one day, you might not. You might continue to develop, albeit slowly (painfully slowly at times) and go on to have a relatively typical childhood and this will all be a distant memory. Just as distant as the memory now seems of when I had to prop you up for every activity, I had to support your head and make sure you didn’t fall. And maybe this will all have been a storm in a teacup.
Just a year ago it was a huge victory if you could remain sitting without falling on your face, and look at you now. You are now that speed crawling toddler; you sped across a church hall floor this morning trying to catch the boy who had the shopping trolley: the toy-du-jour. You are now capable of smearing tangerine over the tiles above your friend’s bench, just as I lamented you couldn’t a year ago. You are making great strides on a daily basis and I’m sorry I don’t celebrate more. Maybe you will have your own children one day and experience the all-encompassing worry that ensues. Maybe you will know the mind-numbing boredom of singing the same song over and over again until you want to scream. Maybe you will one day know how much joy and pain was simultaneously experienced as you grabbed chunks of my hair or bashed your teeth off my skull because you liked the feel of it.
But you are thinking and feeling and making connections and we all have to start somewhere. The start isn’t the question for me; it’s where we will end up. I should probably focus more on the now. Now that you are pulling yourself up and peeping onto the kitchen table to see what you can grab. Now that you seem to be past finding corners to bash your head on. Now that you can’t contain your excitement when Daddy comes home or you know it’s time to put your coat on. Now that you are making great strides, I should celebrate you more and worry less. The worry eats me alive at times. I feel a strange mixture, when you achieve something, of happiness, pride and dread that you might stop doing it again.
At each incredibly sloth-like milestone I am reminded simultaneously of how far we have come but, oh, how far we have to go. I worry about getting complacent; about hoping too much; about getting it wrong and seeing you regress. I worry that we will never get to that picture in my head of how things could all just be fine and that you will speak and go to school and count to 10. How will we ever help you to speak, to read, to communicate your hopes and dreams? There is no precedent for this type of parenting – there is no range of what is typical, the curve doesn’t exist – so how do we do this? We just do. We get on with it and hope that things will get easier. Jesus they have to get easier. I continually look back on the weeks and months with awe that I am managing to do this. Being your mother has been the hardest thing I have ever done. I absolutely do not regret it. You are wonderful and sweet and you have the most raucous laugh and I love you to the moon and back a million times. Maybe one day you will read this, maybe you won’t. But you will know that we did everything we could to make you the best version of yourself that you can possibly be. We can do that.