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Saturday, September 18, 2010

Connecting in a web

This November Ellie will be 8. 8! Though, my brain just reminded me as I wrote this, "Well not really 8, not until February when she was supposed to be born!" Do any of my readers, who are parents of preemies, ever do that kind of self correction? Does it ever go away? ;-)

Just the same she will be 8. She is huge (for Ellie) at 37 pounds and so tall that when I pick her up her legs hang well down past my knees.

It will also be roughly 7 plus years since we moved here. About 6 years since I quit my big corporate company that so kindly moved us out here so that Ellie's shunts could be made right by Dr. Gumnerova at Children's Hospital Boston. Ellie is starting her 5th year at "new school" (not so new any more). And we have lived in our own home for 6 years.

I find myself amazed at all this depth in my life, all these roots. The fact that I have lived in the same house for so long in the same area. Staying here, in children's medicine mecca, is necessitated by Ellie's needs so it's fine. Ellie's needs, as many a mother comes to find, are exactly what I need though not always what I could ever imagine.

The best statistic is that it has been a few years (knock on woods so the tree gods can protect us!) that Ellie has been truly well. I know we had a bad stint for many months this time last year. But that bad stint did not end up in operations, brain damage, or other really scary things like what we have faced before. And though it was bad, because she came out of that healthier (despite the migraines) I still count it as a good year. After all she did get off her seizure meds. She did start eating full force. She did go to first grade. She also, bless her beautiful soul and ever healing brain, start to sleep with some regularity. So many blessings.

I have been struck by the richness of my life and all the beautiful growth coming up from these roots we have inadvertently laid down. We truly didn't mean to. We said, we'll just stay to Ellie's health gets manageable. Then she found "new school" and now we are quite stuck. But by being stuck in a situation where we had to reach out into our environment to survive, we have built something despite ourselves. All these connections are like a beautiful glittering spider's web hung with morning dew in the sunshine.

When we moved here we had no friends. We had people we worked with but didn't know well. We felt very alone. It was a harsh and lonely shift from our very full lives in Los Angeles complete with great friends and colleagues, who are, let's face it, also friends. That's LA for you though. Very different from here. Very different from here was a tome I chanted for the first 5 years here.

Yesterday I walked through my yard, late at night, coming home from work and I noticed how I wasn't afraid. At all. You would never feel that way in LA. I would always felt wary and never lingered between car and door. But last night, I smelled my roses and looked at the moonlight on their white petals and I was startled to realize that I was actually starting to like it here...a bit.

I experienced this same phenomena in Los Angeles - hating it for the first few years and then gradually loving it. See the pattern? Now I realize that there is a survival mechanism in there - adapt or suffer I believe is the technical phrase for it. Even so, seeing it kick in I realized that it's not where you live, but all the people you feel connected to that make a place great to be. The fact that our web of connections has expanded beyond the hospital is only possible because Ellie's brain continues to heal. We are really lucky that Ellie's path has mostly been on an upward trajectory. The fact that our connections have so much depth might, in fact be because Ellie was injured at birth. That has changed everything but not in the way you would typically think.


Penny L. Richards said...

When Jake was eight years and four months, we celebrated his "100th Month." Celebrate it however you want, there are no rules for the 100th Month Day. But it sounds like Ellie will be 100 months old close to her duedate's eighth anniversary, so maybe that's something to observe around that season this year.

Kathryn said...

Hi Penny, I love that. I often feel very sad on Ellie's actual Duedate - Feb 4. That might be a nice way to commemorate it and appreciate the fact that she survived her due date on the outside.

Anonymous said...

Dear Kathryn,
Thought I'd check your blog again to see if any updates and found a post written *for* me on exactly a topic preoccupying me. Adapt or suffer -- very good. Thanks for sharing your thoughts, v. helpful to me. Maybe Ellie had to be born in Nov. to be a tough old Scorpio!!!
Take care and all the best to you, Dave and Ellie