Saturday, May 28, 2011

All A Parent Could Ask For

It's 9:03pm and the little boy is squawking in the bedroom. This has been his practice lately and while we seem to have been blessed with sleep training having been done in the hospital two years ago, there seems to be a toddler phase of sleep training happening here at our house as of late.
As is our approach, I slip into the room and sit quietly by the toddler bed. My boy rolls over and as he is wont to do lately, begins the round two ritual of 'night night'.

"Hug. Love"

I put my forearm down the length of his body and lay my head down on the blankets that are bunched around his chest. My other hand slips underneath and rests sandwiched between my forehead and his beating heart just underneath the skin.

We sit quietly for a few minutes and as I move to come up for air he quickly brings his hand to the back of my neck and pulls me back down.

"Hug. Love."

We resume the position. I hear his breathing begin to slow and wonder when the regular stroking of the back of my head will stop as he falls asleep.

While I'm waiting I'm starting to hear something come out of the quiet.

It's the quiet in my head, but as clear as if it was the knob on a stereo being turned, I hear it.


It's not as if I think this a lot. I'm sure compared to a lot of people out there I do, but given how much I used to think it during those first few months after diagnosis...really I hardly ever think it.

And certainly with so many more pressing things to think about these days- like what shall we do with three hours off, what will Simon bring home today from school for his art project album, what food shall we play with during therapeutic mealtimes, or lately, how long will this tantrum last, I hardly ever think about how this little boy's heart is so sick.

I think about other things related to that but not simply that.

But tonight there she was. Death was reminding me that while she sometimes looks so far away, waving us on as we pass her in our own little bizarre roller coaster/train ride, she's still keeping an eye on us.

There are other heart children that we know with Ejection Fractions and Shortening Fractions so much better than Simon's. Several of them really. Girls, boys, older, younger.  They are sick and they show it. On ventilators, in wheelchairs, waiting for heart transplants.

There are even other children with numbers worse than Simon that are running and playing in ways that Simon has yet to even attempt. I don't understand it and expect that I never will.

But tonight at 9:08pm when all I can hear is "Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie," running through my head, Simon shows me that there is so much more.

The volume gets turned down again and we're back to me coming up for air.

One more round of "Hug. Love" and I can sit up as he lets me go.

As I'm getting up to leave he says it again.
"Hug. Love"

I'm afraid we might have to start all over again only as I turn back to the bed I can see in the dark that he is giving himself the hug and 'love' and I think there is nothing more that I could want at this moment in life.

Isn't this what all parents want?

I know that Simon will always get love from me AND I know there will come a time when I won't be the one holding him as he falls asleep. I won't always be there to hold him after something gives him an 'owie'. I won't always be there to administer the medications and schedule doctor's appointments.

But if I can instill in him a deep love of self and love of the world around him, then I can worry a little less as the independent 'do-it-myself' Simon continues to show up.


Fer sure. Totally.

No Problem.

Food Therapy. 
Don't judge. He gets all his fruits and veggies through the tube.



Hugs and Love with Moses

Snuggles with Sophie

 High Fives with PopPop

MM and PopPop with Simon and Sweet Pea

Monday, May 23, 2011

A Numbers Game

Quick, how many people do you have to coordinate to get 2 people away for 27 hours to celebrate their 9th anniversary together?

"They're two, they're four, they're six, they're eight..." (a little Thomas reference for all our readers who must listen to that damn song incessantly)

Nope, keep going.  


That's right, ten.

I started plotting months ago and I lined up Simon's aunties Joan, Dre, Abby and Bianca and my Mom and stepdad (that's 6) to take shifts so I could whisk Laura away to Santa Cruz for an overnight.  

Everything fell into place very smoothly, all systems were go. 

T-1 day and the first call came in. Abby and Bianca  had been battling a stomach bug all week and things were not looking much better by Thursday night.  We did not need a craptastic bug at our house, so they were off duty.  Enter our awesome babysitters Reagan and Pete (that's 2 more) who cheerfully volunteered to take shifts with him on Saturday.

They took Simon for Saturday morning, Joan and Dre took him that afternoon and everything was going swimmingly.  We were having a great time in Santa Cruz, purchasing hats, kitchen goodies, eating our way through the Greek Festival, watching a bizarre street performer and then went to the hotel to watch stupid TV in the middle of the afternoon.  Ahhhhh...this is what we had signed up for. 

Hitting the streets of Santa Cruz

 My new hat.  Laura insisted I buy it.  Within 15 minutes, I had gotten 4 compliments.  It was a good buy. 

The bizarre and beautiful street performer.  Gotta love Santa Cruz. 

Then... my Mom called.  

My stepdad had an awful sore throat, was starting to cough and she wasn't feeling very well.  It was time to call on our crew again.  A quick call to Pete (and a consult with his roommates/our friends Mel and Tanner- that's 2 more) resulted in coverage for Simon for Sunday until 1:30.

Relieved that everything was lined up, we went out to a lovely dinner...

In the garden of the restaurant. Gorgeous evening.  

 Farmer Laura, by the chicken coop

The view from our table

Our lovely meal (first course anyway)

We went to the Boardwalk after dinner, but almost everything was closed.  We did manage to watch some high school kids practically have heart attacks playing a dance video game.  Made me tired just watching them.  Also, took photos in the photo booth.  Who knew it costs $5 now?  Jeez, I feel old. 

After a good nights sleep (I did wake up at 5:45 a.m. out of habit, annoyingly), we went for a Brazilian  breakfast 

Then Laura  found what I like to call "Eden" aka Kiva Retreat House, a beautiful place with outdoor hot tubs, cold plunge, sauna, gardens, lawn,  sunshine and relaxation. 
Yeah, it's pretty much as awesome at it looks. 

The best part?  They allow kids!  We're so going back.

Overall Laura and I had a very sweet and romantic weekend and were acutely aware of how blessed we were to a) get away at all and b) have such an incredible network of people who were willing and able to make it happen and c) have each other.  Evidently, it showed. 

At one point, a woman said, while passing us on the sidewalk,  "you guys are such a cute couple!".  That actually  used to happen to us with some regularity in our early days, but we realized it hadn't happened since we had Simon.  I guess harried parents wrangling a child isn't as heart-warming as two relaxed ones on a get-away.  Or Simon is so dang cute he steals all the thunder and they don't even notice us when he's around.  Regardless, it was a great reminder of the spark we have together. 

So much gratitude, love and appreciation for our lives, our friends and family and each other...