Saturday, December 19, 2009

Welcome to Pox Land

One of our favourite shows on ABC Kids is Charlie and Lola - and one of our favourite episodes is called something like Welcome to Lolaland. Right now it feels like chicken pox land at our place. Currently E has chicken pox, hot on the heels of J. We are just waiting for M to get it now, right in time for Christmas. E has is quite a lot worse than J, and is very itchy, but even more upset about all the fun events that she is missing. Just in the last 2 days she's missed the Kids Christmas Workshop, a birthday party and a special dinner with school friends, although an impromptu dinner worked out in its stead.

Anyhow, amidst the pox and the sadness, I had a thought the other day that I really would like to meet someone with a baby L's age with Down Syndrome. I've met a few other kids who are a bit older, but feel like I'd like to know someone the same age who I can track along together with. It's just different having a peer, rather than someone who is significantly ahead or behind isn't it? I have felt lots of times in my life that there's noone else I knew who was in exactly the same spot as me - and that's ok - but it can be isolating and lonely. So I thought that this time I'd be a bit proactive and contact DSNSW and ask if there were any other babies around the same age as L. Judy from DSNSW got back to me with a few names, and I emailed one of the mums yesterday. She replied today, and she's keen to meet us which is lovely. Hopefully we'll be able to sort something out for the new year and get to meet each other's families. Maybe I could even visit her playgroup or something..... one step at a time hey!

Wednesday, December 9, 2009

Well it's 5.42am and I'm up. How depressing is that?! Girl no. 3 decided to wake me up at 5am as she couldn't find her extra dummies in bed - still had one, just not 3! Anyway, by 5.30am I figured it was all over for me for sleep. The day is already looking long.

We had a strange day yesterday - it started out ok, until I looked at J's skin and thought that the spots I noticed last night looked mighty like chicken pox. Having dropped M at a friend's place, I took J along with me to see L's paediatrician for her routine visit. Dr Sinn confirmed that he thought J had chicken pox, and that he'd look into whether we should do anything for L. Other than a head growing quite quickly (another thing to watch....hydrocephaly being the concern) L was pronounced to be going well.

I then retrieved M, who had just broken the fish bowl of our friend causing minor flooding (fish was saved thankfully!), with many apologies for potential spread of infection. Home for a rest, and a phone call from Dr Sinn to say that as we don't know L's immune state, he had been advised by some fancy big wig paediatrics specialist that she should have an injection of immunogloblin to help protect her. After an emergency trip to the GP we found that she couldn't get the vaccine, and we had to go back to the hospital while Dr Sinn organised getting the stuff from the Australian Red Cross and getting permission from everyone necessary. Then, back at the hospital with J, M and L this time, we finally get the jab, go and get E from the friends' place she is at, then get home by 5.45pm to make dinner and get to bed.

In the meantime, Adam spent the whole day at the new church PMC setting things up so that we can hopefully use the new building on Sunday. Still dubious apparently! He didn't get home till 8.45pm and I only got E & J into bed at 8pm with a few reappearances. Surprisingly I wasn't a basket case, but managed to call the local thai restaurant for dinner as I really couldn't handle turning around and cooking after my long day.

Well, now that that's out of the way I can get onto some reflections. The last few days I've been reflecting on some friendships with various people. At various times since L was born I've felt quite lonely in my position as her mum. I've felt quite keenly the absence of contact from a few friends, and part of me wonders whether that is just life continuing as it was before (this is mostly people with whom contact was a bit sporadic before), whether they don't know how to cope with L and me anymore, whether things are going on in their lives that mean they don't have time/energy for us anymore. Obviously for a relationship to work it needs to be reciprocal, and whenever I think "I haven't heard from so and so for ages" my next thought it often that I should chase them as I normally would. However, in these last few months, that thought is closely followed by the feeling that I just can't. I can't chase anyone at the moment - I kind of feel that if people aren't interested enough to be chasing me then I just don't have the emotional reserves to go after them. It feels so selfish to say that, but for a time, I'm just going to let myself sit in this place. If I'm still here in a year I think we'd have to do something about it. The thought of initiating contact with some people makes me feel nervous and anxious. What if they just can't cope with me anymore. And I'm not going to put myself out there to be let down again. I will just go with what people can offer in terms of friendship. Not ask any more, as I can't give any more just yet.

On a different note, I've also been thinking that I wouldn't mind meeting someone with a baby who has down syndrome, closer to L's age. I met an old friend and her daughter who has DS who is 3 on Tuesday. She was a real little pocket rocket. As always, meeting her and talking to her mum led to a mixed bag of emotions. In some ways I was encouraged - to see her little L walking and running and trying to talk, but also a bit overwhelmed when I think about how much work it will take to get our L to the same stage. I often question my ability to put in the work that she needs, and anxious that L wont reach her potential as i will fail her. As always I need to remember grace. It's actually not up to me in the end, and all I can do is try and do my best. The often quoted 'in weakness He is strong' comes to mind, and I need to trust that this is true. God knows what L needs - even though we don't know her potential, He does. He knows what she will find easy and what she will find hard. He's given her to us. We will do the best we can for her, and for the whole family, trusting in His care and sovereign control in all things. Why is it so hard to figure out what that best is though? I feel like we have a good grasp of what we feel is best in the big picture, it's in the detail of everyday life that I get a bit lost! Pray for wisdom, and trust He will give it to us.

It's now 6.15am. Maybe I'll go email someone and see if there are any other babies with DS out there.

Friday, December 4, 2009

Remembering Love

Well, time to launch into some thoughts. It's saturday afternoon and 3 out of 4 kids are asleep and the other one out with dad. Nice! Had a beautiful evening out at a swisho restaurant "Ottoman" with Adam last night, a good night's sleep, a new haircut, and now a quiet house is an absolute treat. Ahh, I speak too soon. Little L is squawking. Let's see if she goes back to sleep.

Our little L has Down Syndrome - diagnosed at birth, and a huge shock to us all. She's 4 months old today. What a bizarre 4 months. I still go up and down, depending on hormones, whether I feel like L is going well with her 'therapy' and development, test results, how the other kids are going, how Adam and I are going and of course the weather (plus lots of other factors I'm sure).

Today I am having an up day. L did really well at Early Ed yesterday - good head lifting, good eye contact, good lying on her side and back and looking at stuff! I got to talk with Jen and Jen the physio and early educater about my concerns re her eye contact, but also how I felt it has improved in the last fortnight. As always, they were really supportive and helpful - allaying my concerns that if she doesn't make much eye contact of course that means she's autistic as well and gently reminding me her poor little muscles just have to work super hard and perhaps her eyes are just having difficulty focussing! As if she knew my worries and to prove she will do things in her own time, L had her smiliest day ever yesterday! Oh how the smile of a little baby can light up your world!

Most importantly though, I've also been reminded in the last 2 weeks that God loves us. It's such a simple and oft repeated phrase, but do I actually believe it and live in a way that shows I do? I don't think I would ever say that I doubt this intellectually, but looking back and thinking about how I've been feeling and thinking, when hard things happen I feel like God has stepped back from my life. That he's just letting me go a bit, to see how I fare. Not completely gone, but more distant.

But recently I've been reminded that that is not the case at all. God loves us - he loves me and he loves L and all our children - he is with us in our grief and grieves with us. He loves L and knows her and cares for her deeply. He sent his Son to die for her. Her disability is not a mistake, and it's not a test either. He will sustain us through all our struggles (and joys!) and gives us an amazing hope that far outweighs our current experience. Remembering love - His love - so important and life giving. I feel like I can breathe again.

Give it a whirl

Well. Blogging. Mmmm. Not sure about this but figured I'd give it a whirl. My mind is so full of so many things, and yet often feels so empty! I want to record my journey with my 4 beautiful girls, not for anyone but ourselves, so that we can remember more of the detail of our day to day lives, and my thoughts and feelings along the way.

Here we are as we were only a few short months ago - Adam and I, and our precious little flock - E (5.5yrs), J (4 yrs), M (2 yrs) and L (now 4mths).