Wednesday, June 3, 2009

Finding (and making) the moments that will define us . . .

We had a little set-back today. Last night, Sammie B had a little fever, but we gave her motrin and it went down but then she had a crabby night. So, I decided to just stay home and take her into the doctor since we have plans to go to Nor-Cal this weekend and I'd hate for her to get worse. The nanny arrived, and she told me that twice this week, Sam has been playing and has "tensed up" and her eyes have rolled back, and it looked kind of like a seizure. I had seen Sam do this one other time, but since we've seen so many freaking doctors that all tell me Sam is FINE (and thereby, make me feel a little crazy when I feel like they might be missing something), I had sort of forced myself to believe it never happened. But, when the nanny mentioned it, I realized, I am NOT crazy, and I decided to call and see if the neurologist we saw could work us in. She was so wonderful to talk to before, and I wanted to make sure she didn't find these episodes too disturbing. She had a cancellation so we went in. She doesn't think this sounds like seizures, but she's ordered an EEG to be sure. We also talked more about the weird things Sam does with her eyes. She still thinks the best person to figure all of this out is the neuro-opthalmologist we are seeing next week (took us awhile to get an appointment). She says at worse, Sam may have some sort of movement disorder that prevents her from coordinating her eye movement (and that would also explain the occasional head shaking, though that happens MUCH more infrequently). Basically, its the chicken/egg phenomenon -- could be that the vision delay is causing ALL the problems, or it could be that something else is causing it all . . . I hope its just the vision because that is easy to deal with. The neurologist again emphasized that all the cognitive milestones are met, and Sam is clearly communicative. And the neurologist still thinks this could all be totally benign, weird baby behavior that will work itself out with the physical therapy and glasses. But, "disorder" is never a word you want to connect with your child. She wasn't pessimistic -- she was just the opposite, but I still felt like this appointment was more discouraging than our last appointment with her. So . . . the roller coaster continues. It also seems like we may have to just keep trucking with no real answer for awhile . . . that's the way the doctors make it sound like it just is with babies. Doesn't mesh so well with my personality! But, even if this is some disorder, the ONLY thing we'd be doing for it is the PT, which we ARE doing, so we wouldn't be doing anything differently, we'd just have a label.

I'd be lying if I said I wasn't struggling. I am. To be totally honest, I'm struggling to make it through each day. I am struggling to keep putting one foot in front of the other, to go to work, do my job, and to do anything other than just sit and hold my baby. But, I HAVE to go to work, and I HAVE to do my job, even though I'm consumed with worry. People say I can't let the worry consume me, but I don't know how. I have to work on this within myself . . . I am, and will always be, my daughter's best advocate. That's what mommies do. But I'm emotionally EXHAUSTED. DRAINED. I told Brian I'm envious of his ability to compartmentalize. He goes to work, and from 7-4:30, he does his job. Yes, he worries, but he just goes and he does his job. I feel like I'm constantly distracted, constantly consumed by this knawing worry. It doesn't help that my job isn't one that lends itself well to compartmentalizing -- I regularly work from home, get calls in the evenings, emails that have to be answered, etc., so work constantly spills over into home, and now, home constantly spills over into work. Driving home from the doctor, I was on the 405, and suddenly realized I'd been driving for quite awhile . . . I was 4 exits past our house. I was just driving . . . that pretty much sums up how I've been getting through life these days.

I did realize tonight, when I laid down to take a nap with Sam and we shared a few giggles before she fell asleep, that no matter what challenges we face, we cannot let those moments define us. The smiles, giggles, and love will be what defines us as a family . . . and I can't let worrying consume me so much that I can't enjoy those defining wonderful moments. I need to just take life one day at a time, one moment at a time, and not worry about what the next day will bring. Easier said than done.

My mom sent me the best email after I sobbed on the phone to her . . . telling me that after I was hospitalized for a serious eye infection (and really high fever w/ fever convulsions) that it took her more than a year to let me out of her sight. She moved a twin bed into my room, and slept next to me. We slept together until I was five, and then I said (on my 5th birthday) "I'll sleep by myself now."

I know I'm not the first mother to agonize and worry. But, I can't help but wonder when life is going to cut us a break. Since August 18 (the day I went into pre-term labor and was put on bed rest) I feel like life just keeps knocking us down. And I'm angry. I'm angry that things that seem to come so easy to other babies are not coming easy to mine. I just don't want my baby girl to struggle.

But, my goal for tomorrow is to just get through each moment, and look for those moments that I want to define my family and enjoy them. And to remember the new mantra - the smiles, giggles, and love define us.

(the fever -- no big deal -- in the midst of this crazy day, we also saw her pediatrician and she's now fever free anyway -- hopefully she has a better night tonight -- I don't mind rocking her in the middle of the night ;o) just don't want her suffering!! -- oh, and I also let the nanny go, B is staying home tomorrow and is off Friday -- what a day!).

1 comment:

Elisa said...

All of these pics are cute, but the bottom one of her looking right at the camera all serious in her glasses... Cutest. Kid. On. The. Planet. Period.