Ellie has been great this weekend. A lot of work and super grumpy about her tooth that has finally come through, but she is communicating and interacting more and more each day. She handled 25 minutes off her high flow beautifully today, and seemed upset when I connected her back to the wall.
A song that has encouraged us over this journey and has almost become out families theme song is ‘Oceans.’ The bridge lyrics are,
Spirit lead me where my trust is without borders, let me walk upon the waters wherever you would call me
Take me deeper than my feet could ever wander, and my faith will be made stronger, in the presence of my Saviour.
Tonight at church there was a message about how the disciples were pulled out of their comfort zone to follow Jesus and it got me thinking about this truth for us. Much of this year has been way out of our depth, but also out of our understanding. I really believe we have been held and looked after in a more than ordinary way, some particular things that come to mind are;
- The girls survived what we were told was a miscarriage at 10 weeks
- Ellie didn’t die from her triple sepsis infection
- Ellie’s PDA (hole in her heart) closed itself AFTER they had given up on the drug trial to fix it
- Ellie has not needed the Trachy or Fundo operations we were told to prepare for
- To date, there is still no evidence of the two hernia’s that were meant to be operated on before we went home
- We were given such a long list of expected disabilities and, so far, all that has been picked up is Ellie’s hearing loss
- Hannah’s development is amazingly above all expectations for a 26 weeker.
These are just off the top of my head, but the list of times we have been taken out of our depth and provided for goes on and on. (If I was to list the ways Deb and I have been supported beyond expectation, we could be here all night!) There are lessons we have learnt this year that I knew about in theory, but actually living through them has carved them into our very beings. I pray God can use us to share the gifts that have been taught to us when we come back from the choppy seas and can continue sailing forwards.
Ellie refusing to perform for the camera. Was eating beautifully before I pulled out the camera.