Coming Home

Jaime here...

I just had an incredible week at my new job. I had a few epiphanies this morning about the last few years. My last job was great in a lot of respects, and my former coworkers are very dear to me and I'm still in touch. However, for the last 2 years it's felt a bit like I've been a visitor from another planet in a lot of ways culturally. I realized how much so after the conference this weekend.



I was at "Smokefree California" which was a conference for all the people in the state involved in Tobacco Control. These are all public health/social justice oriented people. I sat in the room the first day and almost teared up looking around- there were people of color everywhere I looked and identifiably queer folks. At one point on the last day, a not so great speaker from a Landlord group tried to draw a parallel about tenants and smoking with illegal immigration. She kept using the term "illegal immigrants" and there was a buzz in the room. Afterwards, someone at my table was talking about it and saying how upset she was that the woman even used the example and that she wished the woman hadn't said "illegal immigrant" but rather "undocumented person". Again, I almost cried. To a lot of people, it just seems like semantics, but to me and a lot of others, the difference in those words speaks volumes. I haven't heard that term "undocumented person" in a workplace setting since graduate school and it was MUSIC to my ears.



At this conference, there were at least 10 identifiably queer people out of a few hundred. I just left an agency that had thousands of employees and in 2 years, never met anyone who was "out" until I came out to them. I had conversations with a few who talked about needing to stay in the closet because it wasn't culturally acceptable there. Everyone was cool with me and always really supportive of Laura and Simon and I, but it's really different to work with people who are "of" your people rather than "support" your people. I love allies- I totally appreciate all the love and support I got and validation of my relationship with Laura AND there's nothing like being around people who you know "get" you and your family in the way someone who is living it does.



Today I realized I've felt like I've been living in a foreign country. I spoke the language and could really function and be an active pariticpant. But this last week has felt like I was finally around English speakers. I experienced this when I lived in Paraguay for a summer- I didn't realize how much extra energy it took to be "other" in a foreign culture until I was with other Americans or English speakers. Then I felt an incredible sense of relief and sort of dropping away of a cloak. I felt like that this week.



I learned about 6 months worth of information in 3 days but I didn't feel overwhelmed at any point because everyone was speaking the same language I know (public health/social justice). I was just learning new strategies, not a new culture. I hadn't realized how much I was trying to learn a completely new culture the past 2 years- really business and sales, which I actually wasn't much interested in. It was exhausting and hard to be/feel successful. This was such a good move.

Also, Simon had his first poop in the bathtub and his first poop in the potty. I knew this day was coming. I mostly just laughed at the beginning and held him over the toilet for the rest of it. Such a big boy :-)

Flyin' Solo (Not really)

It's been a whirlwind of a couple of days with Jaime off on a work conference (starting Tuesday morning before we even woke up), a cardiologist appointment (BNP results in a moment), a blood draw, an Echo cardiogram (nothing worse or different really), a fabulous Mamaw sleep over, a increase in formula volume for the little man overall, visits here and there, a long dog walk, some short dog walks, lots and lots of snuggles, lots and lots of medications given and pukeage cleaned up, some good nights sleep for Shimmy, a little less good for Mommy, an occupational therapy appointment, a home nursing visit (shimmy's put on 1/2 pound in just under 2 weeks- not bad, not great but not bad), and finally a lovely car ride with coos and fwapps of his hanging toys to go and pick up Mama from the airport.

All in all an utterly exhausting three days that we not only survived but I think managed pretty well. A huge shout out to all the single parents out there. That was just three days for me with lots and lots of help. I cannot imagine doing it solo. Just can't.

Jaime is home now and I am overjoyed to have my partner in all this back. She's my partner in so many other things but we are joined with Simon in a way that feels exceptional to all the other ways. This is true since he arrived for sure but even more so since August 1st. Hard to believe but it's true. Love me some Jaime Jenett.

So here's the update on Simon. His BNP was down (from 1690 to 1457) and his weight is up (16.5 pounds). His labs came back just fine (HunkyPants even called to say that they were almost "too normal") but that we should just be careful about his output so we upped his Lasix just a little so that he'd be peeing more. Given that he peed on me twice today ("you're taking off my diaper mom? Sweet. Here's a little treat for you!") it's hard to imagine that he needs to pee more but that's a micro assessment versus the bigger picture that says that too much fluid is hard on the heart.

Also I wanted to take minute to write about the "how are you?" or "how's Simon?" phenomena. Those are two common questions to ask and I know that they are rooted in care and love. They are however very hard to answer. It's almost like the way I am sometimes asked "how're you doing?" when really the person is just using that in the place of a "hello" and doesn't really want or wait for an answer. I hope that sounds familiar and makes sense.

It's hard on me and I know that it's meant to be just the opposite. But it taps a well of feeling and sometimes I don't want that well tapped. Sometimes I just want to shoot the shit before talking about my son in heart failure and if I'm asked how I'm doing or how Simon is doing it means that I have to go right there. I'm not sure what a good response is since "fine" doesn't really cut it anymore (although a wise woman I know says that can also be an acronym for Fucked Interior, Normal Exterior- love that). Not sure what to do about that.

Other than that we are all settling into a regular rhythm, as regular as can be with Dr's visits, nurses coming over, meds, pumps, and blah blah blah.

Really, that's all I wanted to say this whole time. Blah Blah Blah.

Love all out there.

Laura

Here are some photos from the last few days.

Simon loves him some buzz cut

Homecoming

Transformation

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.