I'm starting this post with a little dose of trepidation...I'm usually not one to worry about people's opinions but this subject makes me feel somewhat uneasy and I'll explain why. One of the questions I frequently struggle with is when and how I will discuss my daughter's diagnosis with her and her sibling. Yes, two years in and I still haven't talked about it with my eldest. She understands that her little sister was unwell during her first year but since then she has thrived in lots of ways, so it has never felt necessary. When we discovered that our daughter had a genetic deletion, I remember thinking how much better life would have been if we didn't know. How we would have allowed her to develop at her pace, without the constant scrutiny, notes and discussions. Whenever I start to go down this route, I remind myself how immensely beneficial the diagnosis has actually been to her and us...it's given us a head start - we've been able to work on targets, focus our minds on what we need and have to do to open up all those neural-pathways. This intervention has worked and I'm grateful for it...but it doesn't stop me from querying the what ifs and if onlys.
Without doubt, the knowledge has had two major effects - positive in the sense that I'm aware of how to support her and negative in the sense that it's easy to 'blame' the condition. I have a tendency to fixate on the characteristic traits e.g. being over friendly or a 'cocktail personality', as it's so eloquently described. Over recent months I have obsessed about this and worried intensely about its potential. I've allowed myself look too far ahead, that hazy future none of us have control over but we desperately want to organise and manage. It's taken me to a whole host of scenarios that leave me in a cold sweat. A few of my lovely friends of late have recognised that I'm worrying and have reassured me...they've reminded me that plenty of 2 year olds wave and say hi to people...that my incessant stopping of this is almost squashing her vivacious personality, something she inherits from my husband's side of the family, not necessarily just from her deletion. She certainly doesn't say hello to everyone and can become very shy if someone talks to her - all totally appropriate for her age; but I've allowed her label dominate my reaction to this. Obviously, my intention is to keep her safe and to teach her about boundaries; but my knowledge has affected how I've responded to her behaviour.
My fear is that by telling Bean, by telling Beebs (her sister), they might respond in the same way that I have. I might limit their expectations of what my gorgeous girl is capable of. Will they read this long list of traits and allow it colour every decision they make? Will it propel them to live in fear? Will it make my daughter see herself as a label, rather than an individual? Of course, these are all unanswerable but they can become tormenting if I allow.
The truth is, at some point we will have to have that conversation. We will have to tell her about her condition, as there can be health risks attached to it and consequences if she goes on to marry or want a family. I suppose what I'm trying to say is, I want her to have a life unburdened by a diagnosis. I want her to live without the worry that 'different' can bring...but that's just not possible. I don't want her sister to be sad, to suffer guilt (something I know many siblings can feel), to feel responsible for anyone but herself. These, though, are the cards that we have been dealt and we have to face them as a family - us against the world. I would love to keep it a secret to allow her to just live life like everyone else but I suspect that this is unrealistic and would be unfair to both my girls. In fact, they might not react like me - they might embrace this knowledge and champion it, something I want to do too. I'm sure, they would probably teach me the right way to digest the emotions and concerns.
Diagnosis doesn't stop when the doctor utters the words to a parent...it can be a torrid journey that shows no mercy to its traveller. Every step forces us to make a new decision, to manage a situation/emotion, to find the best way to cope. We won't always get it right, in fact we often get it wrong. Ultimately, my main reason for not telling either of my girls yet is that I want them to live a life beyond limitations. I want them to uncover their strengths and weaknesses first, rather than be presented with a list of who you are or, rather, who you might become. Life's joy is discovery, freedom and evolving into an individual...both of my daughter's deserve that. So, for now, I'm going to allow them the peace and quiet to do just that...when we need to we can talk, explain and work through it all together... but I don't believe that day is today. For the time being, I want them just to enjoy the here and now...something I'm learning to do too.
Please follow my blog here on Blogger. You can also find me on Twitter @BibiMac3. Feel free to tweet me, comment or share my posts.