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.

Small Steps

Today, Tabitha waved goodbye at someone. That's not really news, she's been waving goodbye for a couple of years now, but today was different. Today, she waved goodbye to someone as we were leaving a playground, WITHOUT BEING TOLD TO!!!!!!! For the first time ever, she spontaneously waved goodbye. Everytime she has done it before, she has been told to. "Can you say bye bye, Tabitha?" and she will wave, but she's never just done it without prompting before.

It's such a small thing. Tiny. But huge at the same time.

Birthday Friend

I am just off out to a little girl's birthday party, but thought I'd post the card I made her. Her favourite colour is purple, so I used some SU! retired card and inks, and made this card.

I also used my new Just Perfect alphabet, just because when I make cards for children, I like to add their names. What do you think?

End Of Term

Now it's the end of term, that makes it a busy time of year for a crafty mummy like me. Tabitha has a lot of people who help her each day at school, and I wanted to thank them all for what they have done for her. I made cards up using some SU! products and some other patterned papers I bought a while ago and recently rediscovered. Here they are.

I also made some coordinating bottle labels for everyone, and put them over bottles of wine, and in one case, a large bottle of vodka for one special person.

Then I remembered the buddies that Tabitha has had this year. These are year 4 students at her school who help the Reception children learn the routine of the school and keep an eye on them. So I made them these.

Little pillow boxes that I stuffed with mini choclate eggs. I also made them some cards which coordinate, but I had to leave before I could photograph them. Sorry! Note to self: Be more organised next year.

What does it mean?

I've become aware recently that Tabitha is wanting to walk less and less. She is demanding to be carried more, and is taking longer to get anywhere. I've also noticed a deterioration in her gait, she has more of a pronounced limp. I don't know what is causing this, whether its the leg length discrepancy increasing, or if her exostoses are beginning to impact on her mobility, or if she is in pain.

Once again, I wish she could talk....

I had a dream...

...last night. I dreamt that just from nowhere, Tabitha started talking. I think she said "I'm tired Mummy and I want to go home". She had no idea what those words meant to me, but I grabbed her and hugged her, and told her if that was what she wanted, we'd go (I have no idea where we were!). I woke up with a smile on my face. Then I realised that it wasn't real, and it hadn't happened.

I don't know if my little girl can or will ever speak, but this dream showed me how desperately I want her to. Life is so much harder without communication, it's a fundamental part of being human. I know there are aids available out there, but what about a child who just doesn't get language? And when do you decide that they just won't ever be able to speak and communicate? Tabitha does try, but she can't get it right. No matter how much she tries to say "mama", it comes out "bub bub". And she's 6 and a half. Time marches on, but in so many ways, she just doesn't, she stays static.

Anyone out there got a handy and reliable crystal ball?