I received an email recently that quite upset me... it was talking about Costello Syndrome, and what it means to the particular person who wrote the email, who is a mother of a grown Costello person. Her feelings, when reflecting on the question "How does it affect my life" was quite simply that 'it doesn't'.
I read it, and my first response was to feel like I am some how inferior or something because to me it does affect me, it affects my whole family to an unimaginable degree.
To be honest, when we were first given Nicola’s diagnosis, if someone had told me that Costello Syndrome had no impact on day to day life, or that it meant nothing, I probably would have slapped them.
When the diagnosis was given to me, even though I learned the news in a truly horrible way that I honestly hope no one else in the world ever has to deal with, I truly felt like my world had ended. In those first moments, and in the days and even weeks that followed, I felt like something phenomenal had been taken away from me… and I had to grieve for what I had lost before I could realise what I had gained.
I still haven’t embraced her diagnosis, but I have started to accept it… and that in and of it self is the first step in moving forward.
Even though I have started to accept her diagnosis, to be told that it has no impact on day to day life is not something that I wanted to hear then, and it’s not something I like to hear now… because to us, it DOES impact on day to day life.
It impacts on our lives every time I have to feed her via the stupid tube because she can’t feed from a bottle, let alone breastfeed.
It impacts on our lives every time she gets upset and her cardiac conditions cause cyanotic episodes.
It impacts on our lives every time we have to go through yet another appointment or yet another review.
It impacts on our lives every time we have to leave the house… a quick trip to the store is a thing of the past.
It impacts on our lives when I’m waking up to her up to a dozen times a night, (last night was 11) because she has pain from some mysterious source that I can’t comprehend.
It impacted our lives again last week when her routine abdominal scan revealed a ‘mass’ behind her bladder and now we’ve been told to wait a month before we know if maybe this could be a tumour or not because this condition leaves her predisposed to all kinds of nasties.
It impacts on my life every time I see my nephew who is only a couple of months older than Nicola, or any other child her age… and he’s walking and running and talking and interacting with the world… and my daughter can barely hold her head up.
Perhaps the difference is the fact that my child is still just a baby and we are still trapped in the worst of this condition… perhaps the difference is the fact that I am still new to this world, I’m not yet a battle weary veteran… or perhaps the difference is just in my own mind…
So, I guess, after several days of thinking, contemplating and reflecting, this is my long winded way of saying that I disagree.
I have a daughter named Nicola who has Costello Syndrome… and whether I like it or not, it has changed our lives, for better or for worse.