Waiting. It seems to be a majority of what I am doing these
days. Waiting for appointments, waiting for offices to call me to
schedule said appointments. Waiting for tests then waiting on those
results. Waiting to start medications, waiting to wean medications.
Waiting to see the outcomes of all of the playing we do with her
medications. Waiting for her skills to emerge and hoping that none of
them disappears. Waiting is not my strong suit by any stretch of the
imagination, but the absolute worst waiting of all...waiting for the damn
seizures to return.
I feel like Debbie downer sitting here waiting for the shoe to
drop, but let us be honest and realistic...it is bound to happen. She has
been spasm/seizure free for 18 days and 3 hours as of this posts composition.
This is by far her longest period of freedom since her last round of
spasms that we treated with high dose steroids. I have experienced this
waiting game before. It was as soon as I started to think we might have outsmarted the seizures that they rudely
showed back up at our door, not welcomed.
It is challenging not to let the fear get the best of me, yet I
know it does nothing good for anyone. So while I am part of this awful
waiting game, I try to enjoy
and cherish every moment. I try my best to balance between encouraging little
bear to gain new skills while being skeptical that I might have pushed her too hard,
which might trigger them back. I try to video every
smile and giggle so I have them documented and ready for the future when I have
to watch them as reminders of what she is capable of while also viewing them to
keep my hope. I try to surround her with the things that make her most
happy because this is the time she can enjoy them the most.
I really dislike this part. The part where I am most excited
about how far she has come and so fearful that she will lose everything she has
worked so hard to gain. This for me is that part of the coaster where the
tracks are hidden and it is uncertain which way the ride will continue.
Will we keep moving steady, take a slight climb, or drop 40 mph downward
with little to no warning? Regardless of the way this portion of the ride
will end, one thing is for certain...my harness is pulled snugly against my
chest.
No comments:
Post a Comment