I write this entry while sitting in a restaurant, trying to
get some things done for work. But
instead, I can’t stop staring at this couple and their adorable little
girl. She must be about nine or ten
months old and she keeps putting her chubby little hand up to her lips and
blowing kisses to the waiter. And again
I get that all too familiar pit in my stomach and tears in my eyes. MY adorable, precious little one is almost 20
months old and can’t do that. I’m not
angry their baby can do it. Maybe I’m jealous?
Maybe I’m just sad? Maybe it’s
hope welling up inside of me? While I
feel like we often survive on hope, today it just feels bad.
I suppose this feeling will follow me for the rest of my
life – or at least for a long while – as Connor continues to meet the
milestones he will at a pace that is his own, as he gets left in the dust by his peers and has to find his own
way. I can’t help but wonder if he’ll
ever put his little hand up to his lips to blow me a kiss. I can’t help but be mad at myself for not
treasuring those little things more when Clara did them. Moments, days like this are hard.
Not quite a “poor me/us/him” moment today, but close enough
that I need to stop myself.
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| Sensory play with chocolate pudding. We're also hoping he starts to realize that he can take food and put it in his mouth. |
Ok – on to the good things we have to report since the last
post. Connor had a post-op with the
ophthalmologist and got a thumbs up for how he’s recovering and how his eye is
functioning. He had an appointment with
GI and she was pleased with how he looked and felt. We also visited Radiology for his annual
ultrasound of the kidneys and liver.
Those all still look normal! So
good news from all the checkups this month.
His latest visit was with an Occupational Therapist at CHOP
to see about getting hand splits. She
decided to downgrade a bit and he just has little straps to wear around his
hand to give sensory input to encourage him to open his hand. We're not really seeing any improvement, but are going to stick with it and see what happens in the next month or so.
Connor continues with all four therapists over the
summer. He’s growing stronger and is
getting better at sitting for longer periods – he did 8 minutes independent
sitting (with just two quick breaks) and playing a couple of weeks ago! That’s not the norm yet, but it was awesome to
see what he is capable of.
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| Connor LOVES the dogs. He sat and watched Dharma for quite a while this morning. She was so sweet with him! |
We’re taking a little break from doctor visits for the next
month or so as I’m away on a servant trip for work and then we head to the Joubert Syndrome conference and time with family and friends. I'm sure there will be a lot to reflect on and write about after that experience!
