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.

Cold Turkey Java

It's been a long time since I wrote a post under the label "Batshit Insane". I think that is because when I work this much I am not as funny as I am when I am working less...very sad indeed.

BUT, for the record I have given up coffee - successfully. I haven't had any for over 2 weeks and don't miss it. I still have one cup of earl gray tea in the morning and the occasional soy chai latte but they effect me so much less than the coffee did.

Me and coffee are pretty much done. And I don't miss the nervousness, the extra sweating, the rapid heartbeats, the skin breakouts, and the sleepiness it was causing me! So what was once so hard to do as you can see here, is now done.

Gotta look for something positive after this long afternoon!

Picture description: The de-coffeed me - being cheeky sticking my tongue out at Dave and now all of you...

Livid

Livid = a perfectly round, white, raised area of skin on Ellie's ankle = pressure sore.

Livid = me after hearing that, once again, Dr. Webster did not put enough padding over the bones on Ellie's ankle.

Now, my baby, is the proud owner of a matching set of pressure sores. One for each ankle.

I feel sick as I write this. GRRRRRRRRRR

Lessons, what are the lessons? What can you learn from my lameness? Oh, here's a few that also fall under the welcome to my world category:

#1. NEVER allow one parent to go alone to a casting procedure no matter how many other doctors appointments you are balancing with work. I went alone the first time and Dave took Ellie alone to the second. There is just no way to advocate for your kid when they are freaking out about being casted such that you are entertaining them so they stay still and so that they are less freaked out, while in the meantime the doctors are telling jokes to one another as they forget to pad my daughter's freaking ankle!!

#2. NEVER forget lesson #1.

#3. Just because a doctor is good in the past doesn't mean they will stay that way. I am so dissappointed.

#4. It takes roughly 6 months for a pressure sore to heal - we learned that from the first one - and I think I am being generous there as it is still not totally healed.

#5. Something about never losing one's vigilance and other things I am saying in my head right now as my conscience gives me a substantial beating.

#6. Maybe if a doctor screws up once you should fire them and find someone who knows how to properly pad a cast! Maybe something about forgetting about doctors altogether.... not sure if that is realistic - but I am really mad right now.

After Action Effects:

- Further muscle atrophy - we are 6 months and counting in now - looking at a year total

- Loss of faith in doctor

- Massive mama guilt

- Continued dusting of unused gait trainers

- Ellie losing her excitement over using said gait trainer to make her way around the house on her own speed.

- Potential decrease in bone density for lack of weight baring

Above is a picture of the the pressure sore she got the one time we tried serial casting. It doesn't look much different today.

I am going to take her to as many hyperbaric O2 treatments I can afford (at $200 a pop that means not all that many) to see if that will help. Also posted is a picture of Ellie in her gait trainer, months and months ago. I need everyone to remember that she used to be able to do that. I need to remember that we used help her practice walking in her gait trainer 4-5 times per week. I need to remember we even brought it with us to my mom's one time to show them how well she was doing with her walking. That during that same visit she laughed and walked in her "Pony" for hugs. Just this Sunday Dave, Ellie and I were at the mall early in the morning and Dave and I were commenting on how quiet it was and how smooth the floor is and how we would have to take Ellie there to practice walking as soon as her cast was off. So much for that plan.

Poor Ellie.

I feel like the worst parent in the world.

I am so overwhelmed right now.

It's what's happening on the inside that matters

Today I visited someone who has a heck of a time of it, in their own mind. We will call him George. As we were interacting and I looked around George's house with it's run down, dank vibe and realized how miserable they must be inside. The state of decrepitude of their house was not due to the fact that they were poor or indigent in any way. They are in fact, very intelligent, have their full faculties and are very wealthy. I realized via a juxtaposition of a person close by who is similar in demographics but the opposite in terms of what they were presenting to the world. This person's home was vibrant, filled with light and people, laughter and music. It has a sunny, happy vibe. Observing this stark contrast I had a realization that a person's home is a reflection of their inner life (that has nothing to do with wealth) including their attitudes about the world. George and his house embodied a lack of forgiveness for his own human frailty. The evidence for this was everywhere from how he mistreated his own body to a kind of cheapness of spirit and lack of generosity that has isolated him from all who would try to love him. It was a sad realization. It also made me realize that we can manifest a life however we wish.

What I mean by that is, that our life, the very quality of it seems to start inside, in our own minds. You are the creator of your own day to day world. I mean this in the pure sense of how you are going to feel about every event, every interaction and every choice you make, moment to moment. When you think of it that way, there's a lot of creating you get to do. To be clear, I am not talking about destiny or the fact that some things in life do indeed happen to us or as one of my favorite people likes to say "for" us. NO I am not thinking about that. I'll leave that to God and the higher powers that be.

It's the control of the moment to moment quality of life I am talking about as I have recently had a realization about this. Which is kind of amazing considering what a long hard road it has been these last 7 years. What I am actually experiencing in a moment to moment conscious enough to do something about it way is that there's choices every day that I get to make about how I want to be. They start in my own inner world. I think I turned a corner this summer in that respect. I found my own inner voice telling me at an important juncture to take it one step at a time. That I didn't have to figure it all out in one go. It was this whisper of kindness from a place I am not used to - it was from me. It said, take it at a pace that doesn't hurt so much. I needed that and knew that this gift came as a side effect of living a conscious life. I wanted to say aging there but it's more than that. George is over 70 years in age and many experiences with life that come with aging hasn't helped him live life at all. He is still pretty rotten at it. Never venturing far from his TV or house or life long habits of self loathing. Very sad.

But this inner gentleness I felt was so incredibly unexpected and soothing. I have felt so much pressure to get it right for myself, for Ellie, for Dave, for our life. And a lot of that pressure has amounted to good things accomplished but also a lot of stress. Recently I have remembered to take a deep breath and be still. I haven't made time for that in awhile. Also, Ellie has been teaching me this summer to chill out and laugh. At one point Dave and I were discussing something stressful about our mortgage and she looked at the two of us and laughed. We must seem ridiculous to her the way all middle somethings do to young children and wise old people. I loved it though, that she laughed and I felt relieved as she was reminding me that it's not all such a big deal after all.

I feel like Ellie is the person in this world who keeps me most grounded, in the present and loved. She rewards me all the time, with hugs, signing I love you, smiles, laughs, and the fact that she is growing up and doing all kinds of amazing things no one ever thought she would be capable of. This summer in visiting her 7 year old cousin it was clear that she is very 7 too. That is an exciting discovery. That it was a surprise is due to the fact that she can't tell me directly what is going on inside of her. So when her cousin asked her about things I would have never thought about and Ellie answered them. When her cousin watched Hanna Montana, Ellie did too, without complaint. This was a revelation. it was clear they were on the same page in many ways. That was so incredibly cool.

The best thing of all that Ellie has given me is the fact that I have not felt one moment of the deep and seemingly unending loneliness I felt almost daily, every day of my life until the day I was pregnant with her. I think in reality I am the one who has the most to overcome versus Ellie. She is happy, curious, loving, confident, and present. She's a good teacher. I wonder if all children are teachers for their parents too? Either way, it's really her who is saving me all the time, not the other way around.

*Picture Descriptions:

Ellie with Dave just after riding Splitty

Ellie concentrating

Ellie laughing at her Uncle Braeden in CPK