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


Jessika said...

Beautiful. You guys are amazing Mama's, Simon is so lucky to have you. Sit close with those parents. Many people are going to try and comfort them right now, but seldom get where they are really coming from. Though Simon is here, you get it - you have made decisions similar to those parents.

My heart is breaking for them. No one should be on this path.

x Jess

Sol said...

Without taking anything away from the emotional impact of your post (and it's pretty intense), can I just point out that in pictures 6, 7 and 8, Shimmy looks like one of the gang clearing the brush in Cool Hand Luke. "Just checkin' my yo-yo, boss."

Much love and support to all of you, and I can't even imagine what those parents are going through. Vaya con Dios.

Tainted Fibers said...

Beautiful. Just a wonderful post. I linked this from a blog I follow. I sent off a letter today to the recipients of my late sister's organs. She was only 53. I can not even imagine a child. A baby being that ill. Thank you for sharing.

Shannon P. said...

You don't know me, but I found yo on WHOF. I just wanted to say that you are an inspiring family. I don't normally "follow" people I don't know, but when I saw the link to your blog's URL at the bottom of your picture on the WHOF page, my heart told me to come on over. And it was the best decision I've made in days.

Thank you for posting the link to your page on your picture at WHOF, and for being so open.

Sincerely and with more faith in humanity than when I came on over,