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Archive for January 11th, 2013

“Before you speak, ask yourself – Is it necessary?  Is it true?  Is it kind?  Will it hurt anyone?  Will it improve on the silence?”
~ Sri Sathya Sai Baba

How hurtful we can be without meaning to be.  You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not.  And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions.  We all do it, I imagine.  This quote is so wise, whoever Sri Sathya Sai Baba is.  I learn lots by researching the person who uttered a quote I love. 

I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment.  E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned.  I love these people and look forward to seeing them almost as much as I look forward to seeing Boo.  He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency.  No waiting.  None.  We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything.  It’s refreshing.  I don’t know how she does it, but I’m more grateful for her than she will ever know.

I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures.  I like putting pictures in my blog post.  Tomorrow I’ll remember the camera when I go visit Boo, I promise.  I wish I had it at his doc appointment.  He was parroting in classic echolalia form.  “Jonah, sit on the table.”  Over and over.  He’d had enough at the exact moment she finished gently pulling and prodding his joints.

There are so many things I wonder about my boy.  I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it.  I know that much.  He wants to stay in his room a lot.  They coax him out when they can, it seems.   I hate thinking about him alone in his room.  If that’s what makes him happy, should I be more okay with it? 

I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings.  They don’t tell you a whole lot beyond basic information but I want anecdotal stories.  I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate.  I want to know more about my son. 

I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles.  Of course I just described a fantasy.  Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick.  He’d hit at me, pull my hair, scratch my face.  Is he angry at the world?  Is he angry at us all because we just don’t get it, whatever it is?

Some weeks it’s easier to have gratitude than others.  Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write.   I guess it means every blog post is skewed by its catalyst emotion.  I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.

I’m praying for a lot of people.  A lot.  They all have serious needs, problems, grief.  I don’t know what good the prayers do but I like to send them up anyway.  I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurtYou are not alone.  And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.

Blah blah blah.  Some pictures:

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

his mama's bony body and his daddy's tan

Mama’s lean body, daddy’s tan skin

old days, exploring in the forest near home

old days, exploring in the forest near home

the waterboy

Waterboy

daddy holds Jonah's hand and grandma walks beside them - away from his residence and across the campus to the car.

daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.

Mama will see you tomorrow, Boo.  Sleep tight.

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