Wednesday, April 15, 2009

Where do we go from here?

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That title refers to a lot but in particular two thoughts:


How do you come down from the amazing day we had Saturday with over a hundred (120?) celebrating the life and spirit of our amazing Shimmy La.
It was incredible to look out at the park and just see blanket after blanket, group after group, of people there to join in our celebration. People that I had never met before, or at most only once, there to share with us our gratitude and amazement at this little man who has taught/brought us so much.

It didn't even matter that I didn't get a cupcake or Vietnamese sandwich (you crazy, starved people you). It was all so wonder-full and so hard to come back from.

Simon is still trying out his new toys and outfits (many of which will be replacing older ones that we can pass on to the PICU at Children's Hospital- thank you).

I still can't believe it. The love was so intense, for Simon certainly, but also for Jaime and I. I said it at the party and I'll say it again. I really don't know how all three of us would have made it to this point in time if it weren't for all of you.

Unending gratitude.

Whatever will we do for his 2nd year party?!! ;-)

The other "where do we go from here?" is more of a 'back to the real world question for Mr Shimmy.

We had our full occupational therapy evaluation today to see how we can best proceed with getting our little Simon eating again.
I was so looking forward to this as it seems to be the last bastion of how Simon presents as sick.

How amazing would it be to have my son eat food with his mouth; experience the thrill of finding something so delicious that you can't get enough; or taste something so horrible that you know that you'll never ever put that in your mouth again (until you're in your mid twenties- that was beets for me). I cannot wait for Simon to begin clearly expressing likes and dislikes around food. I love food. I love what the mouth, tongue, and nose can do for you. It can take you so many different places and teach you so much about this ginormous world we live in. Eating something delicious in the presence of loved ones, or even sharing the worst meal ever, can bond you with family, friends, and lovers (potential and settled) in ways that I count as some of the best times in my life. I want to share that with my son.

Today was about getting our family one step closer to that.

Alas, not quite. I admit there was a small but very excited part of my brain that imagine that our OT person would come in, assess Simon and then give Jaime and I three or four concrete things to do and say "Simon will be eating in three weeks/months/whatever.


She pretty much said that we were doing a great job and keep it up. He's a great candidate for learning to eat and there's not much (a few things) to do differently. She went on and on how great he looks and how we're really doing just about everything right for him.

I could feel the frustration begin to build and while I was happy to hear all of that (I'm always happy to hear how good he looks and well he's doing) the end of the visit and then on into the rest of my day, I felt the depression set down.

I'm tired. I'm tired of there being no outside answer, no medication, no procedure, no set of exercises...I'm tired of there being no cure or even quick fix.

I know I know. Don't say it. I'm just venting.

I love my time with Simon. I love our days. He is such a beautiful boy, living large and surviving in spite of his heart having gotten so sick. He is a miracle of the first degree. No doubt. I really wouldn't have it any other way.

Except for the way that I dream about sometimes where there's a miracle cure, clear steps and a finite timeline to getting him eating, and a coach/guide for me that would be there anytime I wanted for guidance, company, and to tell me "Laura, if you just did this, this would happen."


That would sure be nice.

Other than that it's a beautiful day. Simon's right at the end of a three hour nap (changed the timing of it on me again- little stinker), we're getting a new car seat today, and Jaime and I have a date tonight. It's all good. It really is. The car seat by the way is a gift from Jaime's former co-workers from the John Muir Women's Health Center. They all chipped in and got us (wholesale) one of the best on the market. Such a gift! Such a marker that our little man is no longer a baby 'little man' but becoming a toddler. Crazy.

I will end with a love letter to my wife (who is an exhibitionist and doesn't mind you reading long).

Jaime, you and I have been together almost 7 years. In the last year we've had more difficult moments, 'bumps', and yes let's say it, fights, than we've had in the previous 6. I think that's saying something to start with. Then there is the beauty in which we bounceback. I have no doubt where Simon is learning his 'bounceback' from, it's us.

Because being out of sync or having tension with you is so far from where I want to live, I think that we have this beautiful way of moving through those times. Definitely not letting the subject go, but clearly wanting to get back to loving, compassionate, humor-filled and passionate communication is a priority. There is no one that I can imagine doing this with and no one I can imagine doing this so well with.

You are my Bashert, my chosen one. I love you so completely but still in ways that I haven't discovered, as this last year has taught me. I miss you terribly on Monday mornings but love getting those calls from work where you share how you're kicking ass and loving your job. I love you. And I can't wait to see what kind of boy/man Simon grows into because he gets to live in that love every day.

Thank you Jaime. Thank you for making family with me. Thank you for making home with me. Thank you for growing Simon with me.
I heart you.