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.

A Birth Day

A Birth Day

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Family. Love. Image by Stan at Stay True Photography, http://www.staytruephotography.com/

 

Of all the things I could write today, there is just so much.  I could tell you a story about the day Joey was born.  I could tell you what labor felt like, what birth felt like, or what waiting for him to die felt like.  Instead, I want to tell you what true power feels like.

I believe that each one of us has an unique flavor, something that makes us each superhuman.  It is so hard to find in yourself.  We suffer for years, each trauma laying another layer of gunk on top of this super power.  Our brains take over and we become zombie like.  Our super power is still there, but buried deep.  We let people tell us what to do, we place belief in things and people outside of ourselves, and call it things like “giving our power away”, “I feel powerless”, etc.

I didn’t know what I was doing.  I was told that my baby was going to die.  I wanted to love him.  I wanted to keep him with me.  I wanted him to FEEL loved, secure, and to have his place in our family as he wanted to.  I was lucky enough to have the right to make a decision.

I ask myself everyday what I did to deserve the miracle of Joey.  For those of you that haven’t gotten to experience him, he’s amazing.  He lives life so fully, with his whole heart, his whole body, his whole self.  He connects.  He loves.  He laughs.  And his smile, he has my smile, squinty eyes and all.

You know what I did to deserve this?  I listened to myself.  I was given an opportunity to define the rest of my life.  I chose to love, to set everything else aside and love in a way that I didn’t know was possible.  What I didn’t know at the time was that I was unearthing my super power.  That my super power is love, and the depth and power of the way I love, saves lives.

My labor with Joey was maybe four hours.  I had moments where I just didn’t want to let go of him, he was supposed to stay inside of me forever, I didn’t want to lose the comfort of his body.  He brought so much to me.  During transition I yelled something like “I’m freaking out, I’m freaking the fuck out!”, and then it all got very quiet. I pushed a couple of times, and he just simply slipped out of me.  And he was alive.  His heart was beating and he was breathing.  That was all I had hoped for, was for this, a few minutes with him.

Here we are.  A year later.  With him, experiencing love in a way I didn’t know was possible.  My love for everything, for everyone, for life has deepened in a way that I can’t explain.  I can only share it and wonder if the flavor of it resonates with you.

There are many things to be grateful for, every day.  Today I am most grateful for my super power, for my love, and my opportunity to share it with you through a celebration of life with Joseph Jude.

(and if I could just stop crying, that would be great)

Remembering, Into Loving Hands

Remembering, Into Loving Hands

Sometimes I forget.  I forget what it was like.

The moment we were told Joey wouldn’t live.

Carrying a baby that wouldn’t live.

LOVING that baby, soaking in every moment – believing that’s all we would have.

BIRTHING that baby, wanting so badly to meet him, but not wanting to let go.

Sometimes it seems like a dream, and then I see a photo, have a conversation, or relive a moment that brings it back to life.  The gift of the pain, the gift of the grief, the gift of my heart, the uncovering of my soul, the depth of my love.

Into Loving Hands  A reminder.  A gift.  Throughout filming I knew what a gift it was, to us and to others.  We didn’t know how things were going to unfold.  The progression:

1. A quick portrait piece about our midwife, there would be quick bits of me as her client.

2. Oh, okay.  This seems to be involving into more.  Ah, a piece about a midwife and a family learning their baby has some health issues, and the gift of Down syndrome.

3. Um.  Oh. Way more involved than any of us could have imagined.  A piece about a midwife and a family who have learned that there is no expectation that their baby would live.  The family decides to just love the shit out of this baby for as long as they can, and not terminate the pregnancy.  What the hell does a midwife do when she learns they still want to have this baby at home?  She loves the shit out of the family.

This film is so important.  It shows the strength of love in the depth of despair, and what can come of that.  The capturing of our story is a miracle in of itself.  The whole thing, kismet.  I pray that all of people involved in our story feel my love for them and how important they are.  I can’t wait for you to meet them.

Victoria is raising funds to complete the film, an Indigogo campaign started yesterday.  Please take a minute and look through the site, for $10 you will have your name in the credits.  There are more gifts for higher donations.

Click here for the link to the campaign.  There are 47 days left to raise funds.

11 Months

11 Months

February 12th.  11 months old.  Who knew.

I’m still processing.

This gift we’ve been brought, it’s changed everything.  It is the best thing that has ever happened.  It’s not just the gift of Joey, but the gift of how his story started – how much life death has brought us.

So today, in honor of Joey’s 11 monthday, I’m going to share with you all of his milestones since starting back on a full fat diet this past weekend.

1.  He is clapping.  He keeps his left hand still, and claps with his right.

2.  He is waving, with intention.

3.  He is putting food into his own mouth.

4.  HE ROLLING ACROSS THE LIVING ROOM FLOOR.  He is a wild man.  He sees something and he rolls to it, which also means that he rolls his body up in his oxygen tubing.  So funny, so sweet.

Clinic last week was great.  We saw cardiology, audiology, feeding and nutrition, and had another head ultrasound for neurosurgery.  Cardiology: lab work and chest xray look good, no med changes (he’s still on quite a bit), adding fat back to his diet for the first time in about six months.  Audiology:  Fluid still present in his left ear.  His next visit is in two months, if it’s still there we will need to meet with an ENT doc. Feeding and Nutrition: We basically just celebrated fat.  Talked about how to reintroduce it over the course of three days.  He’s still not nursing, I’m pretty much through our freezer stash – so I’m looking for donor milk and meeting with a nutritionist to discuss making our own formula.  Commercial formula is great, but I want to pump this guy as full of fresh nutrients as possible.  I’m so excited about all of this, I can’t even begin to tell you.

Ah,and the ultrasound – no change.  I’m curious to see if his brain tissue regulates after time with all of this fat, but the likelyhood of getting such a good look as he gets older will lessen.

11 months, crazy. 

 

Christmas

Christmas

My mother, have I told you about her?  She spent two nights in the hospital with Joey so that I could spend two nights with my other boys.  I’m pretty sure it kicked her ass, but she did it.  I had a hard time letting go and accepting, but I would so want to give my child what she gave us with that gift.

That meant that I got to wake up to THIS on Christmas morning…

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Taken from my pillow. Seriously, LOVE.

That was pretty awesome.  Santa left a present IN BED for Malcolm, Malcolm was thrilled.  And then he saw the stockings.

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STOCKINGS!!!

Yup, pretty great.

The quick walk  to the hospital next door revealed that SANTA CAME TO JOEY’S ROOM!  I wish wish wish I had captured the look on Malcolm’s face – he just moves so dang fast.

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Ridiculous. THANK YOU.
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Malcolm made the coolest beaded snowflake, which I happened to totally hide in this photo.
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Our Christmas tree.
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Cards and art from amazing friends.
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Another masterpiece.

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We have the most incredible friends and family.  From the lasagna to the cards to the cookies to the gifts – you made Christmas that much more, well, CHRISTMAS.  You helped us to make it exciting for Malcolm in a way we couldn’t given the circumstances this year.

Thank you so much for that.  My heart THANKS you.

And in return, Joey was discharged – I was able to wake up with Malcolm, and sleep with Joey in that very same hotel room on Christmas Day.

A tired TIRED boy.
An Early Christmas Gift

An Early Christmas Gift

The stress! Woah. There has been a lot of talk about the size of Joey’s head. I tend to whip out my phone and say, “welll, his father has a strong head. As does his brother.”

We all finally decided that a head ultrasound wouldn’t be a bad idea. When I was pregnant they told us that Joey had hydrocephalus . At a week old they told us his he did not.

After yesterday’s ultrasound they told us he most likely does, and may need surgery. Hydrocephalus (enlarged ventricles) lives in the middle of your brain. A pretty “whatever” surgery for the neuro team – but it put me right over the edge. More info was needed to decide how urgent intervention was, so they decided to do a sedated MRI. Lord. Really?

If you’ve met Joey you know how amazing he is. His cognitive skills are killer – he acts like a 10 month old, just can’t get his body to follow suit. He’s the most social guy, has amazing eye contact, and is just so THERE. If he has hydrocephalus it clearly wasn’t affecting him yet. What had me so stressed was the thought of surgery. Open heart surgery? Pshh. Brain surgery? I’m in a puddle.

Today we found out that he most likely had a stroke or something while he was in my belly – the ventricles look enlarged because his brain tissue is thin. THERE IS NO INTERVENTION, you don’t “do” anything for this type of thing. Our fellow and resident did a literal high five when they found out. No one wanted Joey, or his heart, to go through that.

My feeling on the whole thing? The brain is the most stupid muscle in our body. How much trouble does yours give you? Don’t you kind of wish you were Joey?

Cath Results

Cath Results

Cath day was long, cath day was hard. It is physically painful to be separated from Joey like that. They call every hour with updates, and I have a huge sigh of relief after each one.

Like always, Dr Marx sat down with me and reviewed the angiograms, the images that are collected during the cath. They are gorgeous. They are moving pictures of dye being injected into his veins that highlight blood flow. I can see Joey’s heart pump, and it is beautiful. What I find breathtaking are the images of his lungs – there is something about those images that literally take my breath away.

What we can also see is any intervention that takes place. Yesterday they both dilated and placed a stent in his left pulmonary artery. Everyone was quite perplexed about a best course of action, the best in the world were in that room. Dr. Marx said “I’m not quite sure who else to talk to”. The thoroughness here is amazing.

So. I’ve been trying to figure out the best way to explain this, and am not quite there. My dear, dear friends Sue and Vicki were here today as I made the fellow draw me more pictures in addition to the ones drawn for me yesterday.

Joey has elevated pressures in his circulatory system, the intervention yesterday will help to lessen them. We need to provide some strong chronic medical care to him until his heart is big enough to take down the Glenn that was done in August and convert him to a bivent.

In a divinely beautiful moment today Joeys surgeon, Dr Baird, walked into his room today. He so clearly and precisely explained all of that, as well as explained WHY we are going down this path instead of a Fontan. AND WE HAVE IT ON VIDEO. <- for some reason that feels huge to me.

As for today, Joey spiked a fever of 102.5, is pretty dehydrated and is still on a considerable amount of oxygen. We will be here for another week or so. Yes, Christmas at Boston Childrens, but so be it. We have our Joey.

The Plan

The Plan

Today started out rough, and then all of a sudden he settled. So strange. The X-ray showed that he’s not responding to the diuretics as he has in the past. Huh. Weird.

Lots of labs, even tested for RSV, which means that we’re on contact precaution. Meaning: Joey was not allowed out of his room – but it did buy us a private room.

So tomorrow – a sedated echo, then a heart catherization. The cath is a tough one, general anesthesia, intubation, the works.

That’s where we are for now. We did this back in October, remember? I hope they find something that they can remediate. I hope I hope I hope.

p.s. three hours of sleep last night, THREE! I feel a bit batty.

Oh, Joey

Oh, Joey

Well, this is something – just the whole thing is so SOMETHING.

Joey has another large effusion on the right side, lots of fluid around his lung, compressing it making it extremely difficult to breathe. He has a tendency to still party when he’s not doing well, not the case now. He was miserable up until about 1 am, settling in now and breathing a tiny but easier.

The issue is that even though he is a bit more comfortable his sats are low, on a significant amount of oxygen he’s satting in the 70s. He was straight up blue when we got to the floor this evening.

This is not typical. Something’s up, it’s going to be tricky to figure out what. He will have a sedated echo once he’s a bit more stable.

Now, can we back up a minute? I need to tell you how amazing you all are. The emails, messages, calls , and visits last week were amazing. That was a big deal to me, the post and response. How can I thank you? I am so humbled by every one of you.

It’s 3:30 am, I’m coming for you sleep!