Tuesday, April 27, 2010

A Mix

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(Jaime here)
Today I'm feeling the incredible bounty we have.  And the guilt I have about it.

This weekend was a mix.  In some ways it was so lovely- Saturday was a baby shower for a friend who is having twins and then Sunday we had brunch with friends and dinner with 3 other families.

AND Laura and I kept bumping heads this weekend, trying to figure out how to manage our time, get everything done, feel connected, meet Simon's increasing need to be active and take care of ourselves.  It's really, really hard to be a parent sometimes.  I feel guilty about saying that b/c we have it so good compared to so many other parents...and it's still hard.

I realized a few months ago that I have some messed up Puritan message in my head that because we have a child with special needs, I expect our lives to be very, very hard all the time and if things don't feel hard, I must have it too easy. When it's not hard, when we have support, when I feel "normal", I sometimes feel guilty.  I feel guilty that we have a date night every week and most of our friends who have kids are lucky if they get one every quarter.  I feel guilty that I get to go to a job I love and Laura has to stay home.  I feel guilty when I go do things for myself because it means Laura has to pick up the slack. I feel guilty that even though we are bringing in so much less money, I'm not feeling it as much as I think I should because we are getting help from our parents.   I totally recognize that guilt is a basically useless emotion. I don't feel shame.  I don't feel remorse.  I feel guilt.  I feel like I'm getting some privilege I shouldn't have because everyone doesn't get to have it. Ah, the perils of being a WASP.
I'm working on realizing that these advantages and resources we have help me and us be contributing members of society. I know it wouldn't serve anyone to have me be so completely overwhelmed by the challenges we're facing that I fall apart. I know this. And yet somehow it feels like I'm cheating by getting help.
Just a little nugget from the dark recesses of my mind :-)

On the bright side, Simon has now completed two full sentences. "Hi Mama" and "Bye Mama". He's mimicking almost every new word he hears, either by trying just the end of it or whispering or mouthing the beginning. It's really cute. "Umbrella" is "La". "Elmo" is "Mo". "Please" is a very cute flip of the tongue that sounds like "Pluh".

He and Laura went to the California Pacific Medical Center for an intake appointment at a Feeding Program there. They were very excited about him because he evidently is a perfect candidate. We're going to try some new things with him to lay down the neural pathways to connect mouth activity with getting full and go back in 3 weeks. This would be such a MAJOR step if we could get the boy eating, even just 10% of his total calories a day. It's hard to imagine the day that he would eat everything by mouth, but evidently anything is possible because we're where we are today.
Simon has been looking particularly dapper these days as you can see:







6 comments:

子珠 said...

Actions speak louder than words. ........................................

Sara said...

Zoey calls Elmo "Mo" too! I am excited for the feeding program - I hope it goes really well.

Jen said...

Very brave and honest, Jaimers.

(and..um...what does "Action speak louder..." mean in this contextoh other commentor? I am curious)

Sarah Woulfin said...

I love Simon's hair & your hats are totally fab!!

湖聿湖聿 said...

好中意你的BLOG阿~加油!........................................

Holyoke Home said...

We wondered whether or not my nephew would ever have his g-tube removed. I'm happy to report he did! Have you connected at all with this community? http://www.savinglittlehearts.com/ Even though they focus on congenital heart defects, Simon's experience is so much the same, maybe there's support there for you?