I am disappointed, but not surprised. I assumed it would
only be a matter of time before her little seizure freedom vacay came to an
abrupt end. I wish it could have lasted 40 days. I can only
describe my feelings as similar to planning a vacation around a blizzard or a
hurricane. You hope and pray that you will make your flight and your trip
will not be cancelled because you know at some point the weather will make
everything close down. In the back of
your mind, you can still envision the fun that will ensue if you should be so lucky to make it to
your final destination. When it is time to be on your way you learn that
your flight will be cancelled and they do not know when they can re-book you.
You are angry, sad, and extremely disappointed, though this was not
shocking news, so you turn to plan B.
I wish we had a
plan b. I mean we do in a sense, we actually have a plan b, c, d, and e,
but just like most plan B's they are not as good as the original plan and
honestly, I just want my original plan back. Oh wait, that plan has not
been followed since 2/11/15, so I guess I will just suck it up and continue
with the windy path that we are following. I do not want to apologize for
my bitterness, but I probably should. I am just so sad and frustrated
right now. I wanted this seizure freedom to last longer, although I know
deep down that is such a selfish request. Plenty of children who have a
CDKL5 mutation are not afforded 39 miraculous days of peace and tranquility.
I really am truly grateful for the time she had free of all of the
fogginess in her little brain, and I can only pray this little setback will not
turn back into the full-blown chaos it once was.
I can tolerate
their return as long as they do not steal our little bear away. I am
willing to compromise as long as they are not relentless and unforgiving.
I know what they are capable of and I just pray they are in the mood to
negotiate. All of our potential plans are currently in a holding pattern
as we figure out what the best move will be. It is always a delicate
balance between bringing out the nukes, the tanks or waiting and watching.
I also need some more time to wrap my head around the fact that our
vacation has been cut short and we have not received our new itinerary.
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