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.