As Ramona’s next surgery approaches I’ve been looking back. And despite all of my anxiety and worry about her cath, I am feeling very encouraged about how things are going now. Here’s my list of the top ten ways our life is easier, happier and more relaxed than it was at this time last year…

1.We are getting a reasonable amount of sleep. Because Ramona is no longer tube fed and receiving medications only during the day, we don’t have to sleep in her room or wake up multiple times a night to attend to her.

2. Simon can walk himself to and from the car. This makes going somewhere with both of them by myself much easier, I no longer need a team of experts to help me get to the store, doctor’s appointments, etc.

3. Things around here are now measured in much larger time increments. Instead of watching the clock constantly to keep track of feeds and meds, we now just make sure that naps, meals and bedtime are regular and consistent.

4. Because Ramona’s perfusion is so much better, she no longer vomits several times a day. In fact she’s only thrown up twice since her second surgery.

5. No feeding tube! This means no tape rashes on her face, no vomiting blood, increased speech and communication and lots more fun in the highchair.

6. Did I already mention more sleep? Both Simon and Ramona go to bed at 7:30pm and wake at 7:00am. Yesterday they even napped at the same time!

7. One year ago we didn’t know if Ramona would have a birthday. We didn’t know what color her eyes or hair would be. We didn’t know if she would smile and laugh. We didn’t know if she’d ever get to see green grass.

8. I can now leave both of the babies unattended for several minutes in their playroom to attend to something elsewhere in the house. I can even go to the bathroom by myself :)

9. Because Ramona is no longer on oxygen at home, I don’t have to map out every single move I make or curse at the tubing as I drag her, the IV pole, and Simon from place to place.

10. I could go on and on. But the biggest change I think has been between Andy and I. The amount of grace and understanding we are now able to show each other, even when stressed, tired and angry, has been a real blessing. Not just to him and me, but to the babies as well.

So hooray! Although we’re not out of the woods yet, things have slowly but surely improved and my day today is bound to be more peaceful, more joyful and just more fun than it would have been a year ago. Now it’s your turn. How is your life shaping up, for better or for worse, in comparison to a year ago?

Here are a few shots of Ramona doing some water play while Simon naps and I wash some dishes.

Love, Jane.