We’re adjusting around here. Adjusting to a new world where positive news about Ramona’s heart is possible. It’s a big adjustment for me, going from cautiously optimistic to less cautiously optimistic. And I find that my usual “eloquence”, also known as long-windedness, about Ramona’s prognosis has just vanished. When asked how I’m feeling about the results of the cath and angioplasty the best I can usually do is say, “Fine, pretty good I guess.”

The results are pretty good. Although they will not conference until next week I did speak with her cardiologist. She said she considered the growth of her BPA’s to be “significant and substantial” and felt that the recommendation would be to wait for six months and then test again. Ramona’s sats have been in the high 80’s to low 90’s and although this causes a little anxiety about her building up fluid in her lungs, it’s still a really great outcome. She has better color, more energy and seems happier.

So why do I keep bursting into tears? I didn’t cry AT ALL during the lead-up to this whole thing and only squeezed out a few hot and very unwelcome tears while waiting during the surgery. But yesterday when I went grocery shopping I found myself sobbing uncontrollably in the toy aisle while trying to decide whether to get a hot wheels or a pretty pony. I think in the past I would have said to myself, “Ya know, get the car. Then if Ramona doesn’t make it you won’t have a pony lying around making you cry.” It hit me that, besides clothes(!), I really don’t buy many things that are just for Ramona. She usually shares in Simon’s toys and gets things that he’s tired of.

And then later at the playground, Ramona insisted that I hold her hands so she could walk around, for 25 minutes! That is the longest she has ever been upright. I was so proud of her. Then she started to get tired but didn’t want to stop. She kept drooping to the ground and then starting to cry and then trying again. I finally picked her up and held her tight. She cried and was frustrated and I cried too. Really cried, in front of all the other random moms at the park trying to enjoy a little patch of sunshine that had opened up in the day.

So I’m adjusting. Adjusting to the idea that a second birthday for Ramona now seems like more of a probability than a possibility. And still grieving that she has a long road ahead of her, with frustrations and limitations that most kids don’t have to face.

Thanks for checking in on us, you have no idea what a comfort and support your comments are. Please pray that Ramona’s arteries will remain open and continue to grow. Please pray her care team will be wise and discerning in how they choose to proceed from here. Please pray that we will be able to enjoy this good news for a little while before anything else major comes up. And pray for me, please. Andy is on tour for a few days and I have a little less help than I’m used to. Please pray that I would remain calm and loving and be able to resist the urge to make a pitcher of margaritas at three in the afternoon 😉

Love, Jane.

Here’s an action shot of our big girl at the Nature Museum this morning. Her hair is getting so long, and she’s getting so tall!