Tuesday, January 19, 2010

Follow Up

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We are 4 days post surgery (minor really but I'm told it still counts as surgery) and sadly I'm still feeling it. Surgery went smoothly (just a flushed face and runny right nostril from the anesthesia). Word around town is that it could take up to 2 weeks for the steroids to kick in and or it didn't take.
Roxie's eye isn't any worse, which is a good thing but we might be looking at several months of healing. She is standing in the middle of the room right now whining. Immobilized by the Elizabethan collar that she has to wear.
Simon is a little more barfy these last two days since we switched over to the blenderized whole food diet but so far we've only had one tube blockage incident and we're working on it. The new blender seems to have just a few kinks that we need to figure out but I will say that it makes a nice smoothie.
The rain is pouring down right now and we're home bound. No school today because of a sniffly baby. Anybody wanna come over?
Things feel particularly rough right now. Not necessarily 'hard' per say but for sure not very smooth.
There's a lot going on.
I treasure my history of amazing communication with Jaime. I treasure our foundation. I treasure those moments of sweetness in between giving Simon feedings and/or Roxie medications.
I give thanks for Simon's joy in just about every moment, especially snuggle and wrestle time on the bed. I give thanks for good genes and making him so easy on the eyes. I give thanks for the Telletubbies. I have immense gratitude for friends and family support. Bless the YMCA and BOB strollers. I love baby sign language (Simon just recently has been showing us 'more' and 'yes'). A huge shout out to the Grand Ave/ Lakeshore neighborhood and to our landlord for continuing to house us ;-)
and on and on and on.
The gratefulness is all right there. I feel it all the time.
Sometimes I don't know how this can go on. (I know it just does but I'm not there right now).
How do families with children with special needs do it? How do you keep on keepin' on when there's already so much to think about without that extra "special" something? And when there is...well how do you maintain?
When will I get back to being more than just Simon's Mommy and caretaker? When will I feel the room again in my heart and head for things other than Simon, and his care and growth? I know parents do it. My mom finished a PhD before I hit double digits. I know it can be done. I even know other parents of kids with extra 'specialness' that do it. Somehow they have the room for part time work or training for a half marathon. It feels like I have neither room or interest.
I'm not saying that I want to go back to work right now but I'm just wondering at what point will I be able to say "yeah, I was a stay at home mom for * years"? More than that though I wonder when I'll feel like I really want to carry on that conversation about a current event or that I even know and/or have interest in those things. I'm definitely not feeling it right now.
So, I'm sorry if you're the one that watches me glaze over as you bring up the latest news or important issue. Not sure why but I don't have room for it right now. Sometimes I start to feel sad or even teary about the loss and then....yup, no real energy for that either.
This is frikkin' hard.
I love Simon so much. We just had a sweet sweet drift into nap time together. He plays with my hands now as he's falling asleep, rubbing the underside of his knuckles over the tops of my hands. It's really almost enough. So then what's the "almost" about? I'm not clear and not feeling like there's anything to do about it.
How much of that is where I'm at or who I am is also another question.
A really good one.
It doesn't help that my back is not completely better and I may just be living with pain for a long time.
Jaime and I were talking the other day and I couldn't help but feel those (stupid and irrational but present) feelings of failure.
Here they are:
I don't have that much to do every day and I can't even do those simple things like lift my child into his car seat.
I couldn't keep him interested in eating after he was so into it while on steroids.
He won't walk. He can, he clearly just doesn't feel confident enough to do it. I'm not instilling in him confidence.
He won't say Mommy. He won't call me by name, any name at this point would be nice.
I can't figure out how to make my back stop hurting.
I can't make myself better and I can't make him better.
I'm failing (just let me get it out, it's good for me). I'm failing at taking care of myself and I'm failing at taking care of my son.
He's not talking, not walking, and not there where most other children his age are in almost everything, where ever 'there' is. I can't start potty training because we don't have enough words down. I worry about his teeth and jaw muscles not developing because he doesn't eat and it's been months and months of working on it. He's so self sufficient that he won't figure out how to call for either his Mommy or Mama by name. I don't even know what to do with myself when I do get some respite care (respite care?! Who am I to deserve respite care?! Are things REALLY that hard?) and I'm gaining weight because I can't figure out how work in some really good exercise time for myself AND get my back strong enough to keep lifting my 25lbs non walking non talking baby that has a heart condition.
If I say the above paragraph fast enough then by the time I get to "heart condition" I'm hearing how ridiculous it all sounds. As true as certain things might be, the feelings of failure or 'should-ing' on myself are just ridiculous. And they're there.
I don't think that chronic pain helps with any of this.
Who's feeling super sorry for themselves right now?
Who? Who? Who? (sung to the tune of ho let the dogs out?)
At least enjoy some photos and witty captions.
Simon loves it when Mama can swim on Mondays
This is the new look for 2010- Boots and a Sweatshirt
Check out those legs!

Simon's got Mamaw right where he wants her

So much so he thinks he'll join her