That Mom Part 2

One child receives a new heart and one child's heart stops beating. That's been the last 24 hours for us over here in Cardiomyopathy Village.

And I am that mom.

The one who runs into a door jam and curses loudly (hoping that Simon will not pick up motherf-er and repeat it all day at camp). The one who primes his tube feeding set up and then lets it run all over the counter because I forgot to put the extension end back into the bag as I left it to go get his meds and barf towel in place.  The one that pours her half and half into her coffee and lets out another mother f-er as the top comes off the bottle and half the container makes it into my cup, spilling out all over the counter at our local bakery.

I am that mom.

Not the mom who had to make the unthinkable decision of taking my son off life support and letting him go.

Except I have been that mom. It just ended differently.

Jaime and I were those moms for about 48 hours. There was that weekend where we went down to Stanford to meet with another heart doctor to decide whether or not to 'list' Simon for heart transplant.  When Jaime and I decided not to, we assumed that it also meant that we would need to begin the process of saying goodbye to Simon. We spent the next 48 hours looking into hospice and palliative care. We talked about organ donation. We held and touched Simon in different ways. We walked, talked, ate, slept, and cried with Death. She was right there with us.

I will never forget that morning as shared our decision with Dr. Rosenfeld and asked should we get started with palliative care.

I will never forget that "Oh no, we have a few more things to try."

That "Oh no".

Oh. No. Two words can be said in so many ways. This was like a dismissal accompanied by a shrug of the shoulders, a gentle frown. Like something you might say to someone that offered you a second helping of a very rich dessert. "Oh no, I couldn't eat another bite."

Except this was "Oh no, I don't think were there yet."  "Oh no, you don't have to say goodbye to your five month old son just yet."

Oh no.

And that was the turning point for us away from Death. Or her from us.

And, I will never forget that time. Those 48+ hours where Jaime and I did what no parent should ever have to do or even think about.

But Brooke and Lee did it. And their 'Oh no' was very different than ours.

Lachlan has been let go and there are only so many of us (too many of us) that are reading this blog, or simply getting started on their days that know or almost know what they are feeling.

There's sympathy and then there's empathy. And this morning I am that mom. I have empathy. I am sitting with Brook and Lee. As close to them as I can get. Through passage ways that are only meant for the Divine. I am sitting here on my couch, as close to Australia as I can get. As close to understanding the death of a child as I can get. It's pretty close.

But, I am this mom. Not that mom.

I dropped Simon off at day camp this morning. He kissed me goodbye with a viking hat on, one horn pointing up the other horn pointing down.  I will pick him up in one hour and forty minutes and we will go right to the potty to see if we can manage a poop in the toilet and not his diaper. I will give him Lasix via his G-tube at 2pm and then at 5pm we will head off to our therapeutic horse back riding session. Then we will have Shabbat dinner with dear friends, lighting candles, drinking wine (juice) and breaking bread.

I am that mom. The mom that learns that her son is knocking down other kid's block towers and not saying he's sorry. Granted he's doing it because he's developmentally delayed and more like a two year old instead of the 3 or 4 year olds that he's at camp with...but still I am that mom.

That mom that, for the time being, is loving, touching, being exasperated, surprised, amazed, pushed to the edge, delighted, and inspired by my son.

This Cardiomyopathy...this thing...this life...this morning....it's all so much. And for little Brooke who had her transplant and is not yet 24 hours post surgery...Rock On! She is already asking to go to the playroom at the hospital and getting to spend hours snuggling in her parent's laps.



I'm gonna take a breath right now and feel it all.  You could do it too if you want.

 It's a lot right?




Here are some pics from the last two weeks

Simon enjoying Djaffar (and vice a versa)

Simon, on the first day of Monkey Business camp,

 fell in love with 'Bob the builder' Aka Dylan

 At Horseback Riding Therapy. Helping out Orlando

In love with Renu, visiting from India

Leg warmers and Arm warmers for the morning dog walk

Simon's new favorite mode of transport

Post wedding

VikingSeries

Last night with Reagan

Heartbreak

"Now cracks a noble heart. Good-night, sweet prince; And flights of angels sing thee to thy rest."

It is with such a heavy heart that I tell you all that little baby Lachlan in Sydney will be taken off life support today and allowed to go.  He evidently suffered a cardiac arrest 6 weeks ago and an MRI yesterday determined that his brain damage from that event was so severe that his little body can't regulate itself on its own.

I don't quite have words...

You can shake that love tree and offer condolences at the "Fight for Lachlan Hulsman" page on Facebook.  They're going to need it.

So much love to you all...

Shaking the Love Tree

When we were in the ICU with Simon, more times than I could count, people we'd never met did something nice for us. They had heard about us from friends, or friends of friends and decided to reach out. Sometimes it was food dropped off at the hospital, sometimes it was an email to tell us they had heard about Simon and were thinking about us, sometimes it was a hug on the street if they recognized us from our blog. These small, random acts of kindness began to knit a web that kept us suspended just out of the pit of despair when things were really bad.

There is a family in Australia that is in that hardest, darkest place right now.

A woman named Brooke, emailed me a few months ago after finding our blog. She has a little boy named Lachlan who has the same heart condition as Simon. When she first emailed me, she said, "We have been captivated with your blog ever since we stumbled across it a few weeks back. We've cried, laughed, but most of all we've related to almost very story told. Thank you for sharing your story. It really is like we are reading our own day to day life. I've even sent it to my family to read.....telling them to change the names to Lee, Brooke and Lachie, and it's us!!"

It was a very sweet message and we've stayed in touch, comparing notes, checking in, etc. Her story reminds me so much of our story with Simon and I feel a deep connection with this Mommy and her family, even though she's so far, far away in Australia.

Her little baby, Lachlan, is 10 months old, and has been pretty stable since he was diagnosed at 2 weeks old.

Until now.

About a month ago, Lachlan got very ill and has been in hospital since then. He seemed to be making good progress and got sent home but 8 hours later they were back in the ER and now he's back on life support.  The doctors don't really know what's going on.

My heart is *breaking* for this family. They were trucking along, just as we are, and now they're back in the pits of hell with machines and drips and lots and lots of unanswered questions. This could be us with the flick of a wrist.

This post is actually an ask.

I'm asking anyone who is reading this to mobilize all your friends to shake the love tree and bring them the spoils.

If you are in Sydney or know someone who is, and have love to spare, here's what you can do/bring to the Sydney Childrens Hospital in Randwick:

Cookies for them and for the staff (always helps to grease the wheels!). Make them a meal and leave it at the front desk (they have no dietary restrictions). A fruit basket. Trashy magazine. Warm cozy socks. Eye pillows. Books they can read to Lachlan, even while he's sedated. A mix CD. A snuggly something for Lachlan to have in his crib with him. A homemade card. A goofy postcard. Anything you can think of that would make them lift their head just enough to remember that they're not in there alone.

They may not be up to meeting you face to face, so it's probably best to see if you can drop things off at a front security desk - tell them it's for the Huslman family.

Let's shake this love tree, people.

p.s. you can follow their journey on Facebook by liking the page "Fight for Lachlan Hulsman".

UPDATE: August 19, 2011- Tragically, today the Hulsman family learned that Lachlan suffered severe brain damage as the result of cardiac arrest 6 weeks ago and made the decision to remove him from life support.  Our hearts are breaking for them...

That Mom

Sometimes I want to be that mom. Not the mom that wakes up and first thing disconnects a tube from her son's belly that just administered medication.

Sometimes I'm tired of it. I'm tired of sitting and pumping food and medications into my son while we watch Monsters Inc. for the 85th time so that he'll be still and less likely to throw up that food and medication (all over the couch, himself, the dog and/or me).

I want to be that mom. The mom that stresses over the fact there was a half eaten plate of scrambled eggs instead of a clean one. The mom that sighs heavily over cleaning up said scrambled eggs off the floor. I want to be the mom that doesn't have to clear seven syringes off the table every morning but maybe a sippy cup instead.

I would be that mom in a heartbeat.  That's not funny. Heart beat.... Not fucking funny.

There was a boy today at day camp that was just losing his shit. His Dad had dropped him off and he was NOT happy about it. Huge tears rolling down red cheeks. Sniffling. Hiccuping with the sad desperation of separation.
I could see the gut wrenching his father was feeling as he walked away knowing that it was what needed to happen.
I would be that parent in a heart beat (fucking heartbeats).

Instead I get a quick kiss without eye contact because the Barn is up and you can actually climb inside of it (once you've kissed Mommy goodbye.)

I'm not proud of my son who is so well adjusted and secure. Today I would trade that in for another Simon that hasn't gotten used to dozens of doctors, nurses, therapists, friends and family that have come to take care of him, wish him well, make him do exercises, take his blood, work on speech, listen to his heart, distract him.

I would like to be that mom. The mom that stresses over leaving her crying son but then finds out at pick up that he mellowed and played well for the rest of the day. Shit, I'd even rather be that mom that gets the call an hour later that he's not stopped crying and could I come and get him.

Instead I'm the mom that walks into the room,  drops his feeding pump bag off in the fridge and checks his diaper stash in his cubby because potty training is so far off for this three year old due to diuretics and stool softeners and language delays.

Today I want to be that mom. The one who's kid will only eat white foods. The one whose kid is growing out of their shoes so fast that they can actually hear the cash register at Foot Locker ringing in their head.
The mom whose kid throws fits in the super market because they can't have that box of  Kix because we have a whole box of Trader Joe's Gorilla Munch in the house already.

I want to be that mom, whose kid is so shy that they will only do the Koala bear cling to my legs when we run into an old friend on the street.

I want to be that mom that has to work at keeping up with their kid, shouting a loud "Simon, STOP!" as they head off toward the edge of the sidewalk.

I want to be that mom. Today I really want to be that mom.

I want to be the mom that got to work off her baby weight and was so frustrated that those last 5 pounds just wouldn't come off.  I would take that in a fucking heart beat instead of being the new mom sitting in the hospital chair for 15 hours a day holding her months old baby and wondering how she could reach the Peanut M&M's that were in her bag on the floor so that she didn't starve but didn't wake her son who's resting heart rate just dropped below 100 for the first time in weeks .

I want to be that mom that had to pump her breast milk at work while staring at a picture of her kid for 'let down'.

I want to be that mom that didn't stop offering the boob until her kid finally had to say "I'm done Mother, now can you please let me finish my algebra homework."

Three years ago today I stopped getting to even think about not being that mom. Three years ago today I woke up knowing that I was never going to get to be that mom because yesterday, in the late afternoon, after a 'funny' start to the day, my son was diagnosed with a chronic and possibly fatal heart condition.

This was the first day of me being this mom.
The one that savors each day.
Each breath.
Lives and laughs with greater appreciation for living and laughing.
Is so thankful for the outstanding little man that makes it so much easier than it could be.
Feels the presence of the divine so much more.
And understands the power of family, friends, and community on a cellular level.

And more evolved shit like that.

Today...I kinda just want to say Fuck Her. Fuck that 'unlearning' the grass is always greener shit. It is. Sometime the grass really is greener and doesn't need as much mowing or weeding or all natural for your child/pet fertilizer.

Today I would be that mom. I would.

In

a

fucking

heart beat.





And oh yeah, it was amazing to celebrate yesterday and how far we've come. Blah Blah Blah. Fuckity fuck fucking evolved shit gratitude and all that.

3rd Anniversary

Today marked the third anniversary of Simon getting sick.  On this day 3 years ago, Simon was diagnosed and admitted to the hospital and the next day was on life support.  It's hard to wrap my brain around it.  How could it be that long ago and how could it have only been three years ago?

For me (Jaime), today felt pretty...average. I think that's saying a lot.  I didn't have random crying, big feelings, acute memories of the hospital.  It was more hustle bustle to get our cupcakes together so we could go to there to say thank you to the ICU staff.

It's a little staggering to think how much we've adjusted in 3 years.

Simon got to say hi to some old friends, including his primary evening nurse, Carol.  They were thrilled to see him and he charmed them all, as is his way.

Mama, Simon and Carol

Reunited and it feels so good (definitely better than when we were inpatient!)

Mommy, Simon and Carol

 Simon with his "scuba mask" on his head aka the face masks they give out in the ICU to keep cooties from spreading, that he requested.  

If I never see one of those damn masks after our need for them last winter when we were in for pneumonia, it will be too soon.  Simon, however, was loving them.  Here he is maxin' and relaxin' in an infusion chair in the hallway. We practically bathed him in Lysol when we got home.     

It was a very sweet, very mellow, uneventful, non-traumatic day marking the hardest day of our lives.  Just the way I like it.

Our Therapy Dog

I've decided that Simon is the human version of a therapy dog.

More times than I can count, Simon has walked up to a total stranger, said "I want a hug" and when they oblige, he lays his head on their shoulder and says, quite firmly, "I love you". It's fascinating to watch the expression on people's faces as this is happening. It tends to vary by gender lines. Women usually smile and hold him closer and dish it right back. Men usually look slightly uncomfortable, awkwardly pat him on the back and say, "uh, thanks buddy". But I can also almost audibly hear the men's shell cracking a little when it happens.

I'm in this thing called re-evaluation co-counseling. The basic premise is most of the troubling behavior and patterns we have in our adult life are the result of getting hurt/disappointed/ignored, etc when we were really little that we didn't really get to express our feelings about. One of the most striking things I've learned is about how men, in particular, are crammed into tiny little boxes by society.  They learn really early that it's not okay to express/have feelings, only really get to have positive physical contact if it's in the context of sex, it's not really safe to be vulnerable, etc.

When Simon comes crashing through all those rules, when guys get a tiny dose of totally unconditional love that they didn't have to earn, jump through hoops for, or beat anyone up to get, it's intense. It's a little painful to watch how hard it is for some of these guys, especially ones that aren't fathers, but also really powerful. When it's not too hard for them or too uncomfortable, they get a light in their eyes that wasn't there before. One of our buddies at the bakery we stop by and visit almost every day recently told me that he told his therapist brother that getting Simon's hugs is the best part of his week.

We're coming up on the 3rd anniversary of Simon getting sick (August 1st). I'm not sure exactly why he got sick or what it all means in the big picture, but this much I know.

 

Simon is on this planet to break all our hearts open a little more each day.

Some pictures of the heart breaker

Getting ready for my last day of Ocean School (Summer school)

 Cowabunga Dude!!

Me and Uncle Barry

And my Uncle Larry

Look, both of them.

In repose with Uncle B

That bag of kettle corn is almost as tall as I am

But I will take it down one piece at a time

And that, dear Mama, is your life line. Here is where your love line settles in with Mommy.

Pictoral essay

 Serious about summer school

 Simon rocks the Microphone

 Story time with Kim and Moses

I'll have one more cappuccino..make this one decaf

 Overnight with Auntie Dre and Auntie Joan

Oh yes, and the SCUBA Diver they got me!!

Next up is our visit to the Academy of Sciences In Golden Gate Park

 It's all relative

 Duuuude.

 So coool

Just chatting with my new Friend. Have I mentioned he's a SCUBA DIVER!!!

 That was just about the coolest thing ever right?

 

Um...that's pretty cool too

 I think I'm having the best day ever!!

What's next?!

I'll Have The Special Special Please

Driving to our morning appointment to cast Simon's feet and ankles for braces.

Laura: "Simon, we're on our way to get your feet ready for new special shoes."
Simon: "I love special shoes." Pause  "I feel special."
Laura: "You are special."
Simon: "I feel special.  I feel happy."

And then he went on to prove both.

About a month ago it was recommended by our physical therapist that Simon get braces for his feet and ankles. There was significant pronation and weakness and she wasn't seeing the progress that she'd hoped for.

I don't know why but for some reason this hit me so hard.

Simon's feet (among other things) have been through so much. First there was the special position that the left one was in when he was born. It had clearly been bent and tucked up underneath my bottom left rib (so that's what felt like a stake poking out from the inside!) and could not only be flexed back all the way to his shin, but could also turn completely inward and be in line with the rest of his leg.

Then there was the time in the hospital where every few days they would be testing for blood gasses and need to prick the heel for a few drops of blood. We were in the ICU for 113 days. I can't do the exact math but Simon's little tootsies were poked no less than 25 times.

We've worked hard at bringing his sense of footness back to a positive place. I've massaged those dogs, gotten him exciting socks, made trips to the local Foot Locker just for fun, and Jaime has even painted his toenails a lovely fuchsia all to celebrate the 'foot'.  So when we learned that we needed to get his feet cast before they could make the SMO's (braces) I was already dreading the appointment as another one of those times where I needed to distract/hold my son down while something was 'done to him'.

Add this to the feeling of sorrow that Simon needed the braces in the first place and the last couple of days kinda sucked.

I prepped him. I mentioned it three days ago, then yesterday, and of course this morning. I don't overdo it. I just let him know that it's coming. The language goes in even if the meaning and understanding doesn't. I had the toys, the Ipod Touch and the towel (in case of throwing up) all prepared.  I should have listened to the boy in the car and relaxed a little.

I'm already smiling from the "I feel special" comment when we get into the office. He says a robust "Hello everyone. I'm here." as he walks into the waiting room and follows up with "I want Trains".
Crap, that's the one thing I've forgotten.
Not to worry, the room that they put us in has a train table. We are blessed.
Our clinician comes in and right away sits on the floor next to Simon at the train table.
Laura: "Simon, this is TD. She's here to help us get your special shoes."
Simon: "Hello TD. Good Morning TD.  I want a Hug."
And there you have it.
She hugs him.
He says he loves her.
She's charmed.
He's more than fine and we're off.

After she watches him walk and stand and tiptoe she agrees that the braces will be beneficial. It will take about 30 minutes to cast them. I'm still nervous

TD: "I'm just going to go and get my stuff and come back and we can get started."
Simon: "I love stuff. I want stuff. I love stuff."

She's back in less than two minutes and Simon is already into her bag of stuff before it's on the floor. He gets her to put the blue latex gloves on his hands instead of hers and while she's gone getting another pair he continues his "I love stuff" tirade.

He wants to hold the sticky casting tape, picks out his patterns for the plastic brace part and straps (Helicopters for the plastic sea creatures for the straps) and goes back and forth between watching a Sesame Street podcast (spectacular is the word of the day) and TD wrap his feet and calves. His right leg goes without a hitch, peep, or any bit of struggle and he only pulls back once as she wraps his left leg.

I can't express how amazing this is. How amazing he is. He is my special special.

I know every child is special. I've worked with children since I was 16. They're amazing and so much more resilient than us more 'mature' folk.  Simon is an exaggerated example of this. He has been through so much in such a short amount of time. What is amazing to me is how deeply he has already learned to be present for each moment, celebrate the goodness and move through the harder ones. He will let you know when something is not to his liking for sure AND he'll also make sure that he latches on to what can be enjoyed while it's there. Most of the time it's people. If there is a person around to have a good time with, Simon will figure out how to have it.  I know that this may get us into some interesting situations as he gets older but right now it's a huge gift for this little toddler man. (Already thinking of several inappropriate teenager or young adult situations that might not be great to attach that last thought to.)



I know I've said this before and there have been countless woo woo writings on how our kids can be our teachers..yadda yadda, woo woo.
Still, I gotta say that Simon is mine and one of the best that I've ever had (and I've had a few great one's).  Speaking of great one's, my mom and dad put it into a lovely visual on the phone today.

Most of the time Simon and I are learning together, walking down this road hand in hand. Sometimes I carry him (he is a toddler after all) and sometimes I'm the one dragging or even digging in my heels. I'm stubborn when it comes to evolving.  I will start to slowly slip back to walking in that rhythm of fear or mistrust. I do it regularly.  That's when Simon ends up being behind me. Little hands placed gently on me (I would say my back but he's not that tall yet so it's really more around the bottom of my tush) pushing me forward until I gain enough momentum that he can hold my hand again as I try to keep up with his little evolved self. The one that requests that I be present in each moment for him. Especially the one's that he seems to be able to glide through much more gracefully than I.

There seem to be so many on this road of parenting a Special Special.

Thank goodness he's with me.

Fuckin' love him. I really do.

Why we will win Parents of the Year... 

(where's his right hand? Holding on to a light bulb in a plugged in lamp..that's right)

The fist pump is accompanied by a "Goooo Bra!!"

So proud of himself

Hearts Are For Breaking

Simon's broke once, literally. It seems to be on the mend. Mine has done it for years.

I think the first time was in the 3rd grade with my friends and the ways that girls hurt each other. My heart broke right then and there when I was told that I wasn't wanted anymore in the 'singing' group that I started. Then there was the first love that feels like nothing else and being cheated on with 'our' good friend. My Nana passing after I was the last person to be with her and to tell her she could go. Loves that came and went, all the while my heart is breaking over and over. 

I heard once that once a heart breaks it's only more open and an open heart is just that; open even wider for the next time that love comes rolling in.

These days it feels like my heart breaks a lot. So much more often since Simon came into this wonderful and wicked world and even more consistently since the day he was diagnosed with Cardiomyopathy.

Simon was playing today at the park. Auntie Dre, Auntie Joan and I each taking turns playing with the little man, spotting him as he climbs, helping him find dandelions, making him squeal with glee as he learns to play chase. And then, less than five minutes into the latter, it's there, the gag and heave. He pauses, brings both hands up to his eyes, pressing them tight to feel some sensation other than the nausea and/or reflux that he's feeling.

He doesn't know any better but my heart breaks wide open. It cracks and splinters into a million pieces imagining my son running and playing and NOT having to stop after just a few minutes of laughing and trying to catch his breath.....from laughing and running.

A minute passes and he's off again, heading over to his beloved Aunties for more chase. I feel the weight of it move up from my own chest into my throat and threaten to come pouring out my eyes. I don't want Simon to see it and 'play' lie down face first on the grass. I manage to get out at least three sobs before I feel it. At least 27 pounds of love jumping on top of me with a loud "hellooooo Mommeeeee," and for the 2nd time in less than a minute my heart breaks all over again.

They almost feel the same. The first breakage is all about how much I love him and want nothing but ease and grace and goodness for him in his life. I know that's not going to happen (mostly since it hasn't since he was born). I know that his life will include medications and limits and comparisons and hospital stays and who knows what else...(more vomiting, shortness of breath, pain, transplants, ???)  I also know that he doesn't know any different and by golly if he isn't one the happiest kids, or just people, that I've ever been around. I know that.
I see it day in and day out.

This little bulb o' mine burns brighter than most in the box and while I like to think about how he's one of the new compact fluorescent ones that shed light farther and longer than the older shorter lasting incandescent ones, he's still got a paper thin layer of glass around him that's not meant to withstand much and like my own heart day in and day out, could easily break into a million pieces.

And then I think about the heart muscle and one of my favorite t-shirts that Jaime has. It has a message that plays over and over in my head most days. "The heart is a muscle the size of your fist. Keep Loving. Keep Fighting." Simon's heart is a muscle. It's a muscle and a teacher and a toddler mess of fiery sugar sweet snowballing loving that I am blessed to have thrown my way more often than not. He can break my heart over and over again for all I care.

No really, for ALL that I care about, Simon can break my heart over and over again.

.

No quotes with these. I think they speak for themselves.

And last but not least, video from Simon's first Dyke March (that he remembers)