Hope and Fear

PS. the bestest Christmas present is of course that Snowflake is home. We really and truly don't need anything but this. I know how lucky we are. I remember how I bargained. Anything just for her to make it through this.

Our meningitis journey is not over. What lies ahead are some tests. First up, a hearing test. I'm worried, nothing new here. I have a bad feeling because so far I've failed to determine beyond doubt that she can in fact hear. There was an incident where she got a fright from a loud noise - but this one was very loud and she also sometimes startles anyway (which is potentially an after effect of meningitis itself - she had those startles from day one of the illness and still gets them when overtired and struggling to nod off). I haven't managed to attract her attention by a noise that she doesn't also see, while she reacts instantly to faces, lights and generally visual stimuli.

So it's with trepidation that I await today's hearing test.

Await if someone heard my bargaining. The "just let her live, we can cope with deafness, we'll just learn sign language, we'll adapt, I'll embrace it if only she lives."
Part of me still thinks it's something we can deal with, that it wouldn't be so bad. The other part now pleads for Snowflake to recover fully. Not for our sake, just for her own. She deserves to experience life to the full.

Second will be a developmental test in 4 months time. I dread it and wish it to happen sooner at the same time. Hope for the all clear, an end to my endless analysing of her behaviour, my constant lookout for signs of issues. Is her difficulty to fall asleep a phase, teething or an after effect? Why is she more irritable than she used to be? How come she doesn't laugh yet? Why will she now not sleep unless she touches me?

To everyone she looks the picture of health, fully recovered. As to me, the mum, whose job it is to worry, whether I likes it or not, I see differences which are minute, yet I see them. Maybe she'll grow out of them, maybe they aren't serious. And yes, maybe she's just teething.

Hope and fear, side by side holding hands.

1 in 150

I'm not one who likes statistics.
Especially when it comes to medical ones. Maybe it's because they disregard the individual, the way that every individual case of an illness, a risk etc is different, and statistics are averaging and will not necessarily apply to you.

A couple of weeks ago, I got a letter from the hospital inviting me to discuss screening options for Down's Syndrome as my age means that I have an increased risk of carrying a baby with Down's Syndrome. The letter threw me into emotional turmoil. I really didn't know what to do. Should I have tests? What then? Would I have a termination? What's the point of tests if I wouldn't have a termination? To be prepared? Can you really be prepared?

Many of my friends have had amnios. Others have refused all tests. Here in my NHS area, a nuchal translucency test is not offered, and the blood test in itself is pretty useless to really assess your risk of carrying a baby with Down's Syndrome. I considered having a nuchal fold scan privately, at least with the combined non-invasive tests there is a better assessment of risk which would then maybe help the decision to have an amnio or not.

Yet this plan didn't answer the real question: would I actually ever agree to have an amnio, considering the 1 in 100 risk of miscarriage it carries? And what would I do if the result was positive for Down's Syndrome.?

I'm not a person who copes easily. I like to be in control. I know I'd be overwhelmed by having to care for a disabled child, it would throw my life into turmoil. I wouldn't choose that life. Then the realisation came that life has taught me that there is ultimately no control over what happens. There's a lot you can't prepare for, so why is so much emphasis put on preparing or testing for Down's Syndrome? Maybe because you can? Was I not considering invasive tests because I'd been invited to discuss them, when before I had thought about it but would not have requested one?

I did go to the appointment that was offered. There wasn't much information that I didn't already know, but I do like to speak to people, it makes my mind clearer. Apparently, my risk of carrying a child with Down's is 1 in 150. When the risk of miscarriage was explained to me (which I knew), I burst into tears. Instinctively I knew that this is not a risk I am prepared to take. 1 in 100. It doesn't sound much. It was the same risk that my mother's operation carried. And she passed away. 1 in 100 is one in a hundred too many for me.

What I did instead is read up on Down's Syndrome and chat to some people online who have a child with Down's Syndrome. It made it real but also less frightening. Again, 1 in 150 is a real possibility and I'm not going to brush this away light heartedly.

Statistics also tell me that 93% of pregnant women who know they carry a child with Down's Syndrome have a termination. That number too is a powerful statement, one that doesn't let me brush away worries lightly. Because I'm sure that a termination doesn't come lightly for anyone behind the statistics.

My name is still down for blood tests. This may sound odd, because after all, if I'm not prepared to have invasive tests, why would I want any tests? Well, last time the blood tests came back good, and it really and truly made me stop my constant worries. That official label of having a low risk pregnancy, a label I could look at every day in my notes, was priceless. And don't blame me for hoping for it this time.