A Picture tells a thousand words.

I want to show you a photograph. It was taken in 2005, before everyone had digital cameras, and was actually taken using a Polaroid camera.

I must apologise for the state of the copy, but I took it under artificial light.

This is a photograph of me, taking my two girls for a walk. In fact, this is the photograph of me, taking my two girls out for a walk for the very first time on my own. Up until this point, Tabitha hadn't been well enough to leave the hospital, even for a short time. You can note the date. Tabitha in this picture was 3.5 months old. 3 and a half months, and she'd never been out of the hospital. I remember that for the first time since she'd been born, on this day, I finally got to be just a Mum. I got to take her out, in a buggy and walk around the area with in the fresh air on my own, without nurses and Doctors watching my every move. It was a tough time. While we were stuck in that hospital, I got to see seriously premature babies grow, develop and go home, I saw a baby come in with life threatening non-accidental injuries, and I saw newborn babies admitted going through withdrawal. The one thing I remember hurting the most about my time in this unit, was that I felt it was so unfair. My baby was born at term, I had looked after myself throughout pregnancy with not even so much as a glass of wine, and I had done nothing to hurt her, and yet I was the one whose baby wouldn't get well, and couldn't come home.

I keep this photo on my fridge to remind me of the happiness I felt on that day (which incidentally was planned in advance, nothing spontaneous in that place) when I finally got to escape for a while, finally with my girls. But it also reminds me how hard and unfair it all was, and how there were times I really didn't think she'd ever come home. So many memories. All from one photograph.

What having a SN child has taught me

Over the last few days, I've done some thinking, which is quite frankly, usually tricky for me. I often end up places that are not really very helpful in my head, so it's best not to go there, but the last few days, I've really been thinking about what having Tabitha for a daughter has taught me.

I have learned that I can cope. When she's been screaming at me for days, I can take myself away for 10 minutes, and come back and cope. When she's been up all night being sick (which she was last Wednesday night, urgh) I can cope. When she vomits in the middle of the supermarket, I can deal with it, cope and get my shopping done. When people stare at her because she looks different, I can cope. Sometimes I ask them if there is anything they'd like to know, sometimes I just ignore them, but that's two coping strategies I have for that scenario. When she starts shouting in public, I've got used to ignoring both her, and everyone else, and in that way, I cope. When the 'professionals' tell me to use methods or medications that I know won't work, I can cope...mostly. The odd one will still catch me on a bad day.

Knowing that I can cope is pretty huge I think. If someone had asked me when I was expecting her if I could cope with having a child with a rare chromosome disorder, the answer would have been a categorical no. It turns out, that answer would have been wrong. I am one of lifes worriers, and the future still terrifies me. What will happen as she matures, what will happen to her abilities, will she need further surgery later (very probably), will she always be mobile as she is now, or will she lose that? But knowing what we've survived so far, and what we have coped with, I'm beginning to feel that whatever happens, we'll be ok. We'll cope.