Thursday, August 5, 2010


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We're definitely feeling the effect of the anniversary of Simon getting sick. All weekend I very intentionally did not want to dwell on how hard things were 2 years ago. Laura started to cry as we drove out of town last Saturday, talking a bit about that day, and I could feel myself physically steeling myself against any of it. I just wanted to have a fun, light 24 hours with Laura and then Sunday have a sweet little visit to the hospital to say thank you to the staff and enjoy our block party.

But the feelings are there regardless of *when* I want to feel them. When I've had the opportunity to "have feelings" this week, I said, "I don't really want to talk about that day" and then proceed to burst into hysterical sobbing. As our process of grieving has proceeded, it's much longer between episodes of having the raw emotions we did at the beginning, but when they're up, it feels just like we're back to that time.

Last night Laura and I were trying to touch base after I did an annoying thing I have done for the last 8 years that mysteriously set her off into a rage. She's really struggling right now and it's coming out as really low patience/tolerance for anything extra.

I totally get it. Sitting on the couch, looking at her crumpled face, I was able to put some of it into words, "We're light years away from where we were 2 years ago, but we're nowhere I ever thought we'd be. What we're doing, what our lives are like, the ways it is hard, is beyond anything I could have imagined for us." This weekend I wanted to focus on the light years journey, but now it's time for us to continue the process of integrating what it really meant for us in the big picture.

Eyes brimming with tears, Laura told me that the feeding therapist watched Simon yesterday and said, "It's going to be a long road with him". The other little boys in Simon's feeding therapy group EAT, just not very much or only very specific types of food. Simon does not eat. Period. They're on the growth chart, but just low. Simon is not even on the growth chart. We're starting at zero where these kids are at 3 or 5 or maybe even 6 or 7 on a scale of one to ten. We have known it's not likely that he's going to magically start eating in 6 months, but to hear a professional articulate where we are on the scale is...sobering. It's just a concrete reminder that we're someplace entirely different than we could have ever imagined.

Laura said she realized, with great sadness, that she was going to be taking him to feeding therapy appointments for *years*. We are going to have to find a preschool for him in a year that will accommodate his feeding situation (special school? Paraprofessional provided by the school that we have to trust to do his feedings?). It will be years before we can travel without bringing a big ass commercial blender in our luggage or a case of nasty Pediasure. Years before we can leave the house without an ice pack for the food bag.

Yes, yes, I'm grateful and blessed and oh so happy that we are nowhere near the terror and horror and specter of death of two years ago and our lives are very charmed in a lot of ways But you know what?

This is fucking hard.

It's hard on us as parents and it's really hard on Laura (and somewhat on me) as an individual trying to lead a full and happy life and it's hard on us as spouses. We mostly take it day by day and it seems manageable. But every once in a while, when we lift our heads out of the water and see how far away land is, it's downright devastating.


Carol from CCF said...

I completely understand how you feel. We are very lucky that Nathan is able to lead a relatively normal life, but I remember vividly the day that it hit me that this was for the rest of his life. Our "trial" would never be over! I also have experienced those times- years later-when emotions literally knocked me to the ground. My sister is a psychologist and she said when we are going through trauma, our brain protects us from the emotions that are too hard to handle- we go on automatic pilot. But once we are stronger, our brain "allows" us to experience those emotions. So now ( yes, even now 11 years later), when emotions hit me like a ton of bricks I tell myself, " It is because I am stronger!" You are not alone- good thoughts and prayers for your beautiful family!

Jen said...

On the shore pulling for you all. I feel so helpless that I am not in the water with you. It is so far out there in the middle. I want to say something silly and uplifting like it's a good thing we all like to swim, or better yet something about how you are really racking up the Karma points, but I imagine it doesn't help very much. So we send you all love and light. And I'll tell you what Maya said tonight, out of the clear blue.
"That Cousin Simon. I love that guy."

sophie g said...

Jaime & Laura --
I read this post yesterday and can't stop thinking about you both. I'm sending you both tons and tons of love. xo Sophie