Sunday, November 30, 2008


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Laura here.
I learned a while ago that transformation is not simply the act of changing one's mind or learning something new. It's the process of understanding your world, yourself, as something completely different. I am going through transformation right now. It hurts, I'm scared, it's not chosen, it just is.

And, at the center of the powerful but slow moving storm is this amazing blue eyed being that I grew and housed in my body. My love for him is so tidal. At one moment it feels like slow moving chocolate. So thick and sweet. And then in a moment it changes to feeling like a line of gasoline lit on fire, moving me to quickly find that next move that will stop the pain, discomfort, stop Simon from dying.

And it feels like it's just me now. There are no monitors, no nurses, no team of cardiologists coming around two or three times a day. There is Jaime and Dianne and so many of you that will come and visit and spend time and even spell me (and Jaime) and see Simon and how he is growing and changing for better or for worse. But there is no one but me that will be his primary. I am a stay at home mom again. I am a stay at home mom for a baby that is very sick. I am the stay at home mom for Simon who is still in heart failure and doesn't look like it or act like it but is. He is. His heart is not functioning any better than it was November 19th before we left the hospital. His medications, his naps, his feeding pump those are all keeping him alive right now. And, I am the one in charge of all of those things. I may get some (a lot of ) support with all that but I am in charge and there is no doctor, no nurse, no one that is more in charge, more aware, of all of those things than me.

I was supposed to go back to work November 17th. In some alternate universe I was going to go back to Creative Arts three days a week to work with children, teachers, families, and a community that I love being a part of. That is not happening. It's not happening now, and it may not be happening for a long long time. What will Simon's function be like in three or five years? Will I ever get to finish my licensure hours? Will I be home-schooling Simon because he won't be able to handle regular schooling? Will I ever get to exercise those parts of myself that I really love (being a counselor, children's advocate, anti-racism trainer, outdoor educator) that are not a part of being a stay at home mom for a child with heart failure?

I am different now. Even more so than after the moment that Simon and I were no longer connected through an umbilical cord. So much more so. My life path looks so different that it did four months ago and even then it looked so different than it did before April 9th.
Sometimes I don't feel it at all and am just there in that moment of playing peek-a-boo and making my son laugh enough that I can see the two new teeth that he's growing. Other times I feel like everything is so elementally different I don't know who I am or will be for the next, day/week/month/year/lifetime.

Jaime goes back to work tomorrow and I feel like the last week has been this dream of time together. I am so excited for her to start this new job, meet new wonderful colleagues, and work again in an environment that grows passion. And I won't deny that there is a sliver of me that is jealous and resentful. It's there. It feels awful. How could I even think about being away from Simon at this time in his life, in his healing. But I miss that too. I miss that part of my life that I may or may not get back. I miss working with challenging children that sometimes just need someone to play some Uno with them and listen to who and where they are. I miss being a part of a team that is looking at how to turn a school into a working community with accountability, activism, and all kinds of learning going on.

And I can not imagine being away from Simon. I can not imagine giving up one moment with him, one piece of his care, his growth, his healing. I would and will do whatever it takes to give him the best chance at a full and rich life, whatever final recovery looks like for him full/partial/?

My life is changed and won't change back. I'm swimming in it right now. It's so much bigger than me, affecting all aspects of my life. And it's not even about me. I know, I know, welcome to motherhood. Only this feels a lot like motherhood plus and it's the plus that's feeling so overwhelming right now.

Just some of the time. Most of the time it's about the moment. A medication moment, a doctor appointment moment, a feeding moment, a nap, a bath, a walk, a smile a giggle, a new sound. Moment to moment. People keep asking what do we need? Visits? Food? A winning lottery ticket (where is that one?), and I honestly don't know. The question is hard, the offers are great. The winning lottery ticket would always be welcome (Jaime earning a little less, me not going back to work, expensive medications, insurance premiums, formula, etc) are an added stress but not a huge one. We are blessed with privilege and resources that so many other families are not. It's not going to be super easy but what has been lately?

Oh wait, this. This has been super easy; loving Jaime, Simon, our family and friends. Also delightful; delightful bringing Simon into our bed each morning for snuggles, delightful seeing Simon's little naked body in all it's newly rounded, line-less, glory during bath time. And of course delicious; delicious touching him, smelling him, watching him experience the whole wide world (or at least the much wider than Children's Hospital world) as we walk down Lakeshore, take a hike in the woods, look out at the Bay from the Albany Bulb, or simply eat dinner in a circle in our living room. Simply delicious.

We are approaching the Solstice this coming month. I am working hard at internalizing what it all means. Hanukkah, Christmas, the Solstice, it's all about the returning of the Light. I stand open armed to welcome it.
C'mon, bring it.


Elizabeth Stark said...

Laura, Thank you for sharing this powerful testament to your motherhood plus experience. Plus, indeed. What wisdom and strength of pen and heart you have, though.

Eleanor Chrom said...

I wept when I read your blog.What a wise brave woman you are. All I an say is live in the now. Do what needs to be done in the moment.Sol joins me in wishing you all our love. Ellie

Elisa said...

Thank you for all that you two always touches my heart.

Jen said...

Oh sister.
I have been wondering how you would change. This is a little taste of it I think.
It's been an amazing life with you so far.
For some reason I am reminded of our room in 4C. Circa '79-ish. The sound of your breathing and late night snatches of conversation. Maybe the intensity of that time, the immediacy and fear and hope and moment to moment life and death feel.
I am here with you (as much as anyone can be) for this ride.
Love love love