Matters of the Heart

Matters of the Heart

 

Life is this incredible, beautiful and painful experience that we all get the gift of EVERYday – the question is, how far are we willing to go?

I’ve been struggling with this a lot, I have settled into a seemingly peaceful place with a healthy family who are all madly in love with each other.  My heart is full, the love is deep, and I feel on the brink of tears at the beauty throughout the day.

And then…

And then I look around me and shift gears, out of my heart and back into my head.  It hurts, it creeps up on me and BAM – I feel like I’m not doing anything with my life. I feel like I need to be BIG, like having a baby or starting a business or going back to school or buying a house or releasing an album or SOMETHING that is incongruent with where I am or what my heart wants to do.  I define all of those things in a way that in my heart I know is not mine, yet the judgement of not doing any of it comes hard and fast.

And then…

I take a breath, and feel.  What lives in my body is BIG, I am learning to honor that.  It was very easy to do when my world was crazy, when I had an excuse, when we played in that place between life and death. I’m learning again, how to navigate life from this soft place, to honor the sacredness while not expecting death.  It’s hard, but this is where I feel most full.  I feel the pulse of everything in this place.I feel me, I feel you, I feel it all.  This is my soul.  As much as I go into that place of pretending I’m a doer, I’m not.  I’m a feeler, and my doer can only support that. My work is staying on that path, to keep my head in alignment with my heart – to choose actions that support that place.  To Nourish myself the way *I* need to be nourished. If I stay here, the BIG in me flourishes. This is where I want to live, in every moment I can.

Now, for Joey:

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Joey and his Homeboy, B

He had a heart follow up in October, no concerns.  The ONLY thing was more discussion around  Joey’s growth – Marx is 99% sure that it is not cardiac related.  We’ve started working with a naturopath who specializes in T21 to address this.  It’s been a great experience, this is where any extra dollars go AND IT IS SO WORTH IT. It feels really nice to be in relationship with a provider who doesn’t brush something off just because Joey has an extra chromosome. Instead of “oh, he’s small because he has T21” it’s “let’s look at HOW T21 affects JOEY’S body, and see what can we do to offer his body an optimal state”.  That’s a big shift.

Joey turns 3 next month, and his life is about joy and progression. Slow and Steady is the theme, there is no rushing.  The challenge for me is to stay in a place where I empower him, and not enable him. (I guess I could say that’s true for my relationship with myself as well!)

The other news IS THE DOCUMENTARY.  The people working on this film, they are extraordinary. It’s intense and beautiful – and I would love to see a full length film come to fruition.  What we lived through was life changing, and there is a reason everything played out as it did – there is a reason Victoria was there.

This feels like a rough re-entry into the world, from my heart to my writing to just BEING in life.  Which only means that soon enough it is going to feel like heaven…

 

Want to hear about ears?

Want to hear about ears?

It’s been 8 months, with nothing major going medically in our lives.  Is that crazy or what?  Although, Joey did have ear tubes placed after his cath (well, one.  They couldn’t get the other one in.).

The procedure for his tubes was uneventful, other than the issue mentioned above and the storm that had us snowed in and stuck at the hospital.  He had a hearing test back in July that came back without the results everyone would have liked to see.  Then his tube fell out and we had a second follow up just last week.

Results?  Perfect hearing.

Yeah, that’s my Joe.

Perfect.

Thump

Thump

Did anyone here that big “thump” last week?

It was me.  It was the sound of my feet hitting the ground.  It was soft, strong, intentional, and it felt so good.

Most of you know that Joey’s catherization went well.  That he was out in record time (for him).  What I didn’t tell you was what happened during that cath.

the morning after

Nothing.

They went in, they measured.  They checked a couple of things, tried to see if closing his fenestration would improve his circulation (it didn’t, he’s not ready for it).  They also took some pictures.  And then they were done.  It took about two hours in total.  That is the amount of time it took them to gain access to his body last time.  My mouth still hasn’t quite closed.

During this time I was with Victoria and Josh, they were there to film a bit of me and Joey – but mainly to interview Joey’s cardiologist and surgeon.  Dr Marx was called down to the cath lab during his interview to do a echo on Joey while he was sedated.  When he returned he was able to fill me in on what they were seeing.

Then the interview restarted.  Victoria asked some more questions, one was something along the lines of “what does this mean for Joey?”  The response ” he will most likely not need surgical intervention for quite some time”.

Now, here’s the thing – for the last 2.5 years I have spent every moment in limbo.  Knowing that absolutely anything was possible.  That life and death can occur at any moment.  So when I am given a timeline like “quite some time”, I don’t question it.  I just think “uh, huh.  Okay.  I guess Joey will let us know when that is”.  This time I wasn’t by myself though.  V continued to ask questions:

“Can you define what ‘quite some time’ means?”

dr. marx

The response – THREE TO FIVE YEARS.

THUMP.

What?!?!?!

And like that, I was given permission to stop falling.  To allow myself to have these human expectations.  To KNOW that yes, anything can happen – but it doesn’t mean that I need to stay there.  It doesn’t mean that I need to be open to death all of the time.  It has made life very tricky.

Our motto has been to stay flexible.  While that’s a fantastic way to be, the way we have been doing it is that we’ve allowed it to limit our intention.  We live our moments together with an intensity and belief that we may not have a tomorrow, which hasn’t been exactly practical.  It’s limited us a lot.  The dance is finding the balance.

Right now we are trying this on, to live with a different kind of intention.  Who knows, maybe we will dare to believe that we will be together for the next 80 years.

Joey and I are about to get in the car for Boston, he’ll be getting ear tubes tomorrow.  It’s a sedated procedure that will be supervised by cardiac anesthesiology.

I don’t plan on saying goodbye – I will choose stay in our hello.

 

All About Joey

All About Joey

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Just before his last cath – 12/13
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A year later – 12/14 (NYE)

 

 

 

 

 

 

 

 

Yes, this post is long coming – and about 4 months overdue.

In October Joey was scheduled to have his first “well” heart catherization.  He’s had a number of them in his life, but all when he’s been very sick and we’ve needed to get an idea of what was going on inside of him to best treat him.  That would have be the first time we voluntarily checked in on him.  The first time we elected to do something so invasive. He let us know it clearly wasn’t time, and gave us some wacky thyroid numbers during pre-op testing.  They don’t sedate with numbers like that, so we postponed the procedure.

Tonight we leave for Boston, pre-op testing all day tomorrow, cath on Wednesday.  Shit.  Am I ready?  Nope.  Well, yes AND no.  I simply don’t like handing him off, to anyone.  So I’m not ready for that.  Am I ready to be on the other side of this, YES.  So the work right now is staying present during the unpleasant.

He’s so strong.  He’s so well.  Yet there are little hints that get me wondering.  His voice is a touch softer, his infamous red cheeks are back.  Every now and then I’ll make a little joke to someone, or question whether they just think he’s really tired.  Maybe it’s the dry heat, or maybe there is something bigger brewing.

He will be in the best of hands, and in the best of hearts.  That is the only positive I have.

A week and a half after the cath he will have ear tubes placed.  Joey’s hearing is ROUGH, he responds incredibly well to vibration, just localizes his hearing a LOT.  At almost two he has a couple of recognizable words – “all done”, “dog”, “da da”, “star”, and almost a super solid “mama”.  If you spend any time with him you’ll hear a ton of approximations – things like “I got that”, “thank you” – his versions.  And then the signs – lord, he just whips them out.  He’ll use one for a month, then keeps it in his pocket.  Until he’s ready again.  He is WILD.

We are still working on solids.  Last night he had two bites of avocado and SWALLOWED both of them.  He has a tendency to just let food hang out in his mouth.  He doesn’t “propel the bolus” <- I find term so funny for some reason.

He’s now crawling on his hands and knees, standing at a table unassisted, and has these wild moves he uses when he and Malcolm roughhouse (similar to what Malcolm and Chris used to do, it’s a lot of hugging while rolling around on the floor).  I keep trying to capture it on video, but everything stops as soon as he sees the camera.  I can’t even with this guy – I mean, really.  He loves himself so much – a good lesson for all of us.

So, no hopes going into the cath.  It will be what it is.  Okay, wait – I do have a hope, I want him to get through it and come back to me.  Whatever interventions they need to do, whatever they find, I can roll with it.  It will be a struggle if he doesn’t come back to me.  I feel like I said goodbye to him so many times last year, because you just don’t know.  The reality of it is that we are always saying goodbye, all of the time – but we also get to say hello.

That hello is going to feel AMAZING.

Universal Truth

Universal Truth

There is something about breath, finding the ability to breathe whatever emotion you hold.  Only by breathing do I get the chance to feel all of this.

Last year we were in Boston.  Last year we spent Thanksgiving in the cafeteria of Boston Children’s Hospital.  We were admitted through the ER on advice of our local pediatrician.  We thought we were dealing with an abscess on his incision – turned out his chest was full of fluid again.

To say that I am grateful is an understatement.  Today, while I breath I can feel the gift of all of this.  Our life is not easy, much of our landscape has changed, but it is full.  This house, this life, it is so full – and none of this would be if anything in our past was different.

Pain is a gift, without it we wouldn’t hurt.

So I happily breathe the pain, and when I let myself feel that pain through my breath, I find joy.  As I breathe the joy, I know that pain is to come again.  But that’s okay, because I know joy is to follow.

That is what I know to be universal truth, it is yours just as much as it is mine.

As we enter the holiday, please allow yourself to cry, scream, throw shit, and then breathe.  See what shifts for you as you feel, bring that crap up, unbury it, love it – like I love you.

Because I do LOVE YOU.

You have been here, 100% for us in the way that you can.  Thank you.  Thank you for loving US the way that you do.

Boston Bound

Boston Bound

This Fall is so different from last, this time last year we were either admitted or in between admissions following Joey’s last surgery.  He was so sick.  Here we are, getting to enjoy Summer’s shift to Fall.

This time next week Joey and I will be in Boston, probably just settling in (cross your fingers for family housing).  We will spend a day full of pre-op testing on Tuesday and then undergo his 4th heart cath on Wednesday, which is grounds for an automatic admission.  The reason for this is to take a peek into his heart and verify that his insides are as happy as his outsides.  We will also have better insight as to the size of his right ventricle, is it growing or is it not, as well as how his pulmonary arteries are growing.  Historically they’ve been on the smaller side, and if they present as still smallish and are affecting pressures, etc we may need to intervene.

How do I feel?  It is so hard to say.  Joyful to be here, scared to be here, grateful to be here.  While talking about it at dinner tonight Malcolm said that he doesn’t want Joey at the hospital – I didn’t cry, woah.  This isn’t about fixing Joey or his heart, but giving Joey and his heart opportunity.  Ultimately all of this is out of all of our hands and all we can do is love, love, love him.

So the balance continues, as always, and I’m hoping this one is a quickie.  I’m so not looking forward to BCH food or sleep chairs (honestly, I can’t even call them beds) but can’t wait to see Joey’s cute little stinky face when they are done.  I’m recognizing my PTSD as what it is, and knowing that when my fear comes it’s not because of where we are now but simply because of where I’ve been.

I’m loving you guys all so much and will absolutely, 100% provide updates throughout the week.

Whoops

Whoops

So much for a once a week video – that didn’t exactly pan out.  Sorry I’ve been away, there’s been a lot of non-medical/no hospital trip crap happening, just logistical life stuff. 

I’d like to say that those logistics are just things that happen, with no roller coaster – but is that ever really true?

So many details, but the basic high level view is that we’ve had a lot of financial reconfiguration to do and had to put our house on the market to avoid foreclosure.  Scary, and a relief.  What came with that was a fear of not knowing where we were going to be.  That’s a hard space to be in for me, I felt scared and inadequate of not having a home and plan figured out for my family.  The idea of leaving Troy for a quiet place was overwhelming, and the process of finding a new home, a new preschool for Malcolm and new therapists for Joey – woah.  THANKFULLY I am never in this alone.  I get so many reminders of who I am and where I’ve been, that suddenly things aren’t as scary anymore.  That fear literally seeps out of my feet and into the ground and I feel my chest explode open and my laughter returns.  Life is a trip.

I’ve been experiencing these moments of the truest clarity – the things that I have been taught are actually coming to fruition in my body.  The joyful understanding on a cellular level that every moment is fleeting, feeling that in both my moments of sorrow and in absolute joy is freeing.  The realization, again on the that cellular level, of how powerful the vibration between all of us is.  How when you are who you are without the layers of muck you are able to feed and feel the healing of yourself and those you love.  The way that has been sitting in my body since we arrived at our new home is intense. I am grateful that these shifts continue.

(sometimes it can be hard to share this stuff, I hope it makes sense)

I am happy to be back with you in this way.  I get to sit at this desk, look out this window and see green, I can feel my heart in it.  There is a magnolia tree just out my back door, I love it so much and haven’t even seen it in bloom yet.

Malcolm Turns FOUR
Malcolm Turns FOUR (such an odd picture, I love it)

Malcolm just started a new preschool, we are still in a holding pattern with Joey’s therapy, I’m really looking forward to getting back into a true groove with writing (this feels choppy) and Chris and I are learning to navigate our new town. Malcolm and I went to the grocery store the other day and passed a cow farm, you could smell the poop.  I started telling Malcolm about where I grew up, and how much I (don’t judge) LOVE THAT SMELL.  His response?  “When I was a kid and I was growing up there were 15 Targets”.

I am so happy to be here.

Here is a Joey sighting – teething sucks.

Ouch
Ouch
Video Update

Video Update

Hi!  Where have we been?  How are we?

We’ve been home, doing awfully well.  I’ve been struggling to find time to WRITE – so I thought I’d TALK instead.  We were both a bit shot from the day, and more than a little hungry, but we did it!!!

I can’t believe I didn’t mention the two new teeth I found today.

See us here…

https://www.youtube.com/watch?v=vc4AmDjbfH8  (I hope this works!!!)

Love you, love you, love you.

Community

Community

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Photo by Jennifer Young-Canton

This weekend we held an Open House to celebrate Joey’s birthday.  The decision to do this instead of a traditional party was an easy one, this was how we were going to celebrate Joey’s life a year ago – after his death.

We spent the last month of my pregnancy trying to decide how we were going to handle the physicality of death.  What could we do to honor him?  How long would we keep his body with us?  We planned to bathe him with oils, love the precious body he chose to live so shortly in.  Who would we invite to spend this time with us?  Who would even be open to it?  When do we call the funeral home?  Would we bury his body, or have him cremated? If we bury him, where?  If we cremate him, where do we spread his ashes?

So many decisions.

What we knew was that we wanted to have a party, to CELEBRATE him, and to invite everyone, to have anyone who felt connected or a need to be with us to do exactly that.

Take a moment to scroll up and look at the picture at the top of this post? This photo was taken as we were singing happy birthday.  Look at the couple in the background.

Go ahead, I’ll wait.

That man’s name is Craig Bryce, he owns the funeral home around the corner.  He grew up in this house.  I met him last year while trying to figure out what to do after Joey’s death.  Feel that for a second.  It’s big.

Last week I got to call him and invite him into our home to help celebrate Joey’s life, WITH Joey.  A living, breathing, smiling, laughing, loving Joey.

Feel THAT.  Woah.  Yeah, BIG.

I can’t believe how our community, and the diversity of it, has grown.  The opportunity to share our love with you and to experience how YOU love, was the absolute best way I could have imagined to celebrate life.

We continued to celebrate on Sunday at The Pilates Principle – there was a fundraiser held for our family.  We walked in to see the place packed with people getting massages, taking Pilates classes, shopping for baked goods and clothes – many people who were new, meeting us and Joey for the first time.  Tears, my lord, HOW DOES THIS HAPPEN?  How are we so fortunate?  For that, I thank Nuhar and her staff so deeply.  Just for the experience of seeing all of these people supporting us.  The funds they raised in 3 hours was OUTSTANDING.

Everyday we grow.  You, me, this community that we are.  Thank you for being a part of this – my heart and our life.