Friday, August 19, 2011

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'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


Last night with Reagan


"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...

Tuesday, August 16, 2011

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...