Saturday, August 17, 2013

A year ago - 1 month old.Today -13 months old. Taking down a day-dream soccer ball and letting my imagination play.

A year ago we celebrated Jonathan's first month of life with coconut sorbet and raspberries all around.  The girls sang him "Happy Birthday" into a video recorder, since they couldn't see him that day.

He was in the hospital, not doing that great. His kidney function was continuing to decline. He was no longer getting my milk because of this and was back on IV nutrition entirely (they call it "TPN").  He was spending his lunaversary getting tests and scans done in order to get a clearer picture of what was going on. (Lunaversary = my made-up-term for a month-anniversary, although apparently I'm not the only one to come up with this).

We were very very uncertain about whether or not he'd make it. In some ways, it felt like we were on borrowed time. Ella had been in school for a week, and I'd made arrangements for Mimi to start day care the next week. I was still on maternity leave for two more weeks, but I wanted to be able to spend as much time as possible of those two weeks with my son, at his bedside, hopefully holding him every day.  I had hoped, too, that maybe he'd graduate from the tube breathing to nasal cannula, so I could maybe try to nurse him.  Either way, I wanted to be near him. I wanted him to know me.

He was growing up. He was entering his third trimester.


Today Jonathan is 13 months old. We didn't do anything special for the day, but Jonathan DID finally get the knack of feeding himself teething biscuits and allowing us to feed him baby food this week. This has been a long, hard struggle, so we do not take this for granted in the least.

By the looks of it, he'll have his G-tube (feeding tube) out by Christmas or before.

We couldn't be more thrilled.

Steve was reconstituting an amazing burrito meal from last night in the kitchen while Jonathan chomped on his teething biscuit, putting his two new teeth to work as best he could. I started chatting with Jonathan about food and life. Steve turned around and looked.

"If I could have had this picture last year," he said, "it would have made things so much easier."

If we could have known.

This is what we dreamed of, but most days, frankly, I didn't dare to dream, because the dream brought with it the sorrow.

I remember about a year ago the girls were playing in the front yard.  For a moment, a brief moment or half a moment, a three year old Jonathan was in the front yard with them. Under big maple tree, trying to kick a worn soccer ball. He missed, Mimi kicked, all the kids ran. Jonathan's legs were small, but he laughed and wasn't deterred. He hit the ball the next time, and it started to roll just a litt--

And then I broke off the dream. The cart was getting way ahead of the horse, here, and it was hurting my heart. "Stop, stop!" my heart screamed to my head. He might not live. Even if he lived, he might not walk or run or see. No. There would be no dreaming. Dreaming would mean lost dreams, broken dreams, failed expectations and hurt. There would be none of that. I needed to be a strong momma, a proud momma. If he lived, I needed to be able to glory in his accomplishments, whatever they were. I needed to not be sad from broken dreams. I would return now to just hoping and praying that he'd survive. The soccer ball was mentally shelved. Maybe someday. Not now. Now we'd take whatever came with that as it came. But there would be no dreaming. That would hurt too much.


I took the soccer ball down from that mental shelf when summer finally hit about two months ago. I played my daydream out in my head again. This time it didn't hurt. He'd have to be at least three in my day dream, that much was pretty clear. He wasn't even sitting yet at one year old. But I think he'll get there. He'll run, I think. He'll play, too.  And at the very least, he'll be there laughing with his sisters.

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