Friday, November 19, 2010

"Normalcy" - Who Needs It? Sometimes Me.

Lucy got her first Synagis shot of the season today.  For those of you who don't know, this is a vaccine against RSV.  It doesn't fully protect against it, but it should help the severity and duration of the illness if she contracts it.  It's atrociously expensive, so chances are unless your child was a preemie, you've never heard of it.

Lucy's a big girl now, and bigger Lucy = bigger dose of Synagis.  Both legs were attacked, and boy - was she pissed.  I don't blame her; someone came into our home, her sanctuary, and jabbed needles into her chunky little thighs.  I hate seeing that shocked, betrayed look on her face, and the tears that fall, accompanied by the softest - but hardest - crying.  Lucy deals fairly well with Synagis; she doesn't become bipap-dependent or require tons more suctioning.  Mostly.  She does, however, get quite a bit clingier than her usual "not in the mood to cuddle" self.

She fell asleep on the couch, and I got all ready to put the bipap on her when I realized that the metal piece that plugs into the machine was bent to the point of not fitting.  Must have happened during our recent hospital trip.  No worries; it was later in the day, and I figured I would let her sleep for 15 minutes and wake her up.  Wrong.  Lucy woke up on her own, crying hard.  I picked her up to soothe her and walked her around with her head on my shoulder (her new favorite position).  After 10 minutes - about all I can manage carrying a 24 lb baby - I noticed she had fallen back asleep.  I didn't take her back upstairs to put her on her vent.  I didn't lay her back down and put her pulse ox on.  I didn't try to wake her up.  I sat down and laid back with her, stomach to stomach.  No machines.

I know, I know - something can happen in an instant with a SMA kid, and you might not even be aware it's happening.  Even though she's breathing, her gasses may not be exchanging properly.  Her sats may be low, and I wouldn't know.  What I DID know is that she was a child who wasn't feeling the best and wanted her mama.  Twice I tried to lay her down and at least put the pulse ox on her, and she started wailing (wailing being a relative term; it was pretty quite.)  I caved.  Lucy slept on me for almost two hours, first on her tummy, then cradled in my arms.  And it felt amazing.  Something that most moms accept as a given, and may even feel hampered by at times is something that I don't get to experience, ever. 

So today I gave in - to Lucy and myself.  We were a "normal" baby after shots and a "normal" mama comforting her.  I know she needs her bipap, she needs her pulse ox, she needs this Synagis - but she needed me too, and (we) needed a break from SMA.  And I was happy to give it to her.