Disjointed post. The heavy and the light hearted of it all.

So, with all the fanfare of Zoey and her oncology check up and such, I missed updating on a few things. Mainly, Matt running his first full marathon and pulling out a 3 hr and 39 minute final finish. 26.2 miles. Crazy good. His goal was to come in under 3 hrs. and 45 and looks like he blew that out of the water. Jess ran her personal best in the half marathon and crossed the finish line with a smile. She and I then ran to meet Matt at mile 24, where he declared: " Tired. Cramping. And I could cry." We gave him a much needed pick me up and we booked it back to the finish line to see him cross in typical upbeat Matt style.

  I sulked around the course that morning, missing the fact that I wasn't running. Unable to properly train due to all my recent health issues. But I am better and managing my new diagnoses and ready to jump back into training. My latest obsession: A sprint triathlon with Zoey. Trying to figure the logistics of it but I am nothing if not persistent, so I will give it my best shot.

The boys are out of school in 2 weeks and I am ready. Ready to not be a slave to the clock. I crave routine but I am anxious for things to ease up a bit. Things will still be busy, but not in the same way. We are preparing our summer bucket list and have a trip to Oregon planned for my nephews wedding and I am also heading back to NY for my 30th high school reunion. Surreal. Seeing I could swear I was just 30 myself. I hardly recognize the 17 year old girl, of days gone by.

Mark has been starting up a new show, which has necessitated EXTREME hours. His industry and I have a definite love/hate relationship and recently, as I was literally stumbling around the house, trying to take care of the kids, one of them 100% dependant upon me, and I mean while was at the mercy of one of my unrelenting vertigo episodes, with few options other than to soldier on,  I found myself in most definitely the 'hate' phase of my feelings about Marks work and his proximity to the house. Something has got to give and one thing, for the first time ever in our lives of raising children, I have seriously contemplated moving closer to LA and Hollywood. We are losing so much precious time as a family,  I am missing having a partner to help parent, that the thought of tacking on 3 plus hours to the day with each other, is luring me that way. Whether it is truly feasible, remains to be seen.

Speaking of extreme and as it is defined:

ex·treme

 [ik-streem] Show IPA adjective, ex·trem·er, ex·trem·est, noun

adjective

1.

of a character or kind farthest removed from the ordinary or average

2.

utmost or exceedingly great in degree

3.

farthest from the center or middle; outermost; endmost

I have a post partially written about this 'extreme parenting' some of us do. My beautiful friend Elizabeth defines this crazy dance we do with raising not only our typical children but the raising of our 'other' children, as just that, 'extreme parenting'. It is much more complex and multi-layered than that but for now, take my Monday for instance. I spent the majority of my day amongst what I best describe as my 'people'. I schlepped my little love around the halls of CHLA. Feeding her on the go. Maneuvering her chair from one place to another. Changing a diaper in the bathrooms as I did wall squats with her draped over my arm in a version of a football hold. Holding her tiny body close, as to not let her flailing arms hit the needle during her blood draw.  Normal stuff for me. All the while I can weirdly and effortlessly step into an environment that very few can imagine. I am surrounded by children with various disorders and diseases and equipment that I am sure, the majority of others have never glimpsed. I can engage in conversations that involve, life and death and loss and strokes and chemo and seizures and hemispherectomies and tube feedings and wheelchairs and, well the list goes on. And then, I flip this switch, come home, pack a picnic dinner, head over to the boys open house, where there is 700 plus kids and families milling around, doing their thing and you know what? I feel absolutely and positively out of place. Uncomfortable in my skin and the chip on my shoulder is becoming a boulder and all I can think about is how I want to get back to my 'peeps'. I let comments like " Joe, your sister is funny looking." or "Daddy what is wrong with that girl." and the reply, " I have ABSOLUTELY NO idea.", get to me. Really get to me. And all I wanted to do was go home. Quickly.

Anyway, more on that later. With some honest talk about what it is like to be a parent in this life we are living and continually learning, in. I try to articulate it to others, and admittedly do not do it very well. I fall short of expressing the continual balancing act that needs to be done. And how, we can live this life in extreme parenting with one foot in a world of fear, inadequacy and yes, sometimes even deep despair and sadness, and also derive joy of the immeasurable sorts from life as well. It's a crazy beautiful life but boy, is it difficult sometimes. A lot of the time in fact. That is the truth of the matter. That is sometimes what I really need people to know. How sometimes I want people to stand in awe and wonder how it is we all manage to stand upright on somedays. Well, that is the jist of it. Simplified of course. Some may be interested in it, some will not. I once had someone say that they like reading the good stuff here and not the downer stuff.  I get that I guess, but it is not the reality. Not the reality of my life at least and I venture to guess not the life of many others, Whether you 'extreme parent' or not.

Okay, disjointed. Didn't I warn you?