Monday, October 5, 2009

My Heart Hurts

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Not Simon's.


We had our 18 month PT evaluation today. I really like and respect the therapist that came. She was the same one from last spring and for the most part has a great way of explaining and communicating what's going on.

So here it is. There is nothing obviously wrong with his working parts but for some reason he is not walking. He has no tremors, no consistent 'toe walking', he has great muscle tone and good balance. And he has made about one months progress developmentally in the last 6 months.
"He seems stuck."
"He should be a toddler by now."

I felt so stupid. I heard that "should" and it went straight to my heart.
It landed on top of all the other "shoulds" that are piled there that I work so hard (and well) not to give credence to. And each time a new one arrives and lands on the top of the pile, all the ones below it stick out their little legs with their combat boots on and start the sharp kicking to my heart.
"Simon should be walking."
"Simon should be eating."
"Simon should be talking."
"Simon should at least be saying Mama."
"Simon should be spending more time around other kids."
"Simon should be able to take a trip to visit his New York family and see where his Mommy grew up."
"Simon should be able to go to daycare."

Simon should have had months 4-8 of his life free of ventilators, blood draws, PIC lines, spinal taps, central line placements, life threatening bacterial infections, talk of heart transplants, cardiac sweats, Echo cardiograms, and vomiting.
I could go on but then I would just be 'should'ing all over myself.

So once again, a certain reality just doesn't jibe with another. How to reconcile the reality of the sweet, super happy boy that spends most of his days enjoying, exploring, and delighting in his world, with the other reality of my sweet fragile Simon that cannot afford to get sick lest it send him back to the hospital and IV medications, who cannot speak certain sounds at all (no back of the throat G or K sounds yet), who has yet to master three let alone the twenty words that he's supposed to be using, who cannot walk yet, and who fights eating with great stubborn refusal and discomfort/fear.

They are both Simon Lev Fitch-Jenett and I love them both. I get to spend most of my time with the former, although the latter is always present, just sometimes emerging from shadow.

Both can melt my heart in my chest. One more often with laughter and delight and the other mostly with dead weights like the ones I used to use scuba diving...their only purpose is to make you feel heavy and keep you down.

So there is nothing wrong with Simon. It's likely that if we held off with PT, "at some point he'll walk." And she'd like to see that happen sooner rather than later. Up until Friday when Simon turns 18 months old, we are still on the chart for 'normal' walking time. After 18 months he is officially delayed. Maybe he'll start walking by Friday. And, maybe we'll need to start the process of getting a referral from our pediatrician and getting on waiting lists and starting PT and paying extra co-pays and having additional appointments and blah blah blah.

I'm not feeling as sorry for myself as it sounds. She did say over and over again "he's great, he's doing great, he's looking great, you all seem to be such a great family." It's true and I know it.

I also know that Simon works best when he's on his own timeline with gentle nudges in the right direction.

I also know that my heart hurts and I'm grieving for all those "shoulds" that we just don't get right now.

I also know that Simon Lev Fitch-Jenett is one of the happiest, most engaged, loves checking out his world, little dudes that I ever met.

Sunday, October 4, 2009

Simon Eats and Walks!!

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In his own special way.


he may not eat food but he sure loves to munch on his foam pillow

make like the chic from the Exorcist
Sorry to be a tease with the title of the post but I just had to report that we've had a couple of days with Simon acting like a 'new man'. He was a little Juggernaut last night 'running' with assistance between Jaime and I at a lovely dinner with our friends Justyn, Kim and Amira (and then staying up till 10pm just for fun). Then this morning he had a ball playing with some really delicious Pea soup at Brunch with G'pa Bruce and Grandma Nola. I think some even made it into his mouth!

A lovely weekend all around.

It was a great start to what promises to be a full month of October. We have a PT eval tomorrow, GI appointment later in the week, camping in Yosemite (little nervous about that), a Cardiology workup, and visits to the pediatrician to start our flu season regiment. Whew!

But this is where we're starting from so right now it's all feeling good.