It’s hard to find the words to describe the day…. exhausted and amazed at the tail end of
it. We began before dawn at 4:30am. From the moment my daughter opened her
eyes, she has been heroic. I don’t use the term lightly, especially for
somebody who has already battled the disease for nine years. She has shed her
share of tears and she has begged to avoid shots, treatments – begged for relief
and freedom from all this disease entails. She is a normal 12 year old girl
that way…. who wouldn’t beg to avoid this thing? But not this morning.
This morning, my twelve year old daughter walked to the truck in the dark foggy
cold and climbed up without a single whimper. She chatted through the 45 minute
drive, and the 90 minutes of registration paperwork. She even managed to smile
and crack a few jokes while in pre-op. as she donned the ritual hospital gown,
booties and shower cap (Mom! This is so ugly!). It was only after the
anesthesiologist arrived that the tears started… and she begged us to take
her home. And we had to stroke her forehead and try to soothe her…. and hold
our breath as the IV was started. Then she abruptly turned off her tears and
turned on her maturity and directed her attention to the doctor. She demanded
that she did NOT want the mask down on her face until she was completely out –
because that was the scariest part she remembered from last time – the image of
the mask descending to her face. With wide eyes, he looked at me and looked
back at her…. and the anesthesiologist nodded assent. With that, Caitlin set
the tone for the day.
During the surgery, we waited helpless in the lobby…. and it’s hard not to
travel down the road of “what-if?”. I thought of everything from the
reasonable (What if she gets an infection?) to the bizarrely far-fetched (What
if the doctor has a heart attack just as he is making the incision?). We drank
coffee and watched the clock tick and called people with updates. And in only
two hours, we were called back to recovery to find our little blond dynamo
already groggily waking up.
The day has been a roller coaster of up and down moments. The pain and
discomfort has been a shock to her…. she does not remember it from last time.
The coping mechanism imposed by our memories, I think. What has been a shock to
me is the transformation in her – from a little girl who always has let mom
answer the doctors’ questions, to an empowered young lady who steps up and
persistently requests what she wants. This is the same kid who can never seem
to list of the medications she has taken for years? All of a sudden, she is
reminding the nurse of when her pain medication is due next (It was 3:45 when
you gave it last…. I think I am due.) I am used to being the advocate, the
one with the boxing gloves on. From the moment we got to her room after
recovery, she started complaining about her catheter and asking to have it
removed. She said it felt wrong – there was too much pressure. We all, mom and
dad included, just assured her that it was normal. They called the surgeon and
he insisted it must remain until tomorrow. She repeated the story to the
pediatrician. And to the floor rotation doc. And to the nurse. Several times.
When the nurse measured output in the afternoon, she discovered that the tubing
was not flowing properly. She cleared it and a large back flow was released
(sorry for the gross details – but it’s sort of important to the story).
Caitlin felt improved but insisted it was not enough. She kept asking again and
again. She asked to see the pediatrician again and she repeated her description
of feeling “ready to explode”. Finally, just before the change of
shift for the nurses, they were given the green light to remove the catheter.
She had to prove that she could lift her pelvis to get on a bedpan, which she
gladly did – and then they relieved her of the catheter. When she then used the
bed pan, the outflow was greater than had collected by cath all day. Apparently,
there had been a problem with it’s placement… and she was was correct the
whole time. Something was wrong as she kept insisting. But she held her ground
and got the response she was looking for.
I was humbled and proud…. because this is the very spirit I’ve been fighting
so hard to build in her. Sometimes it feels that I am always the puppet master
– and I worry what will happen in six short years when she will essentially
have the right to refuse to continue treatments. This is the spirit that will
help her take care of herself and her needs when I am not following her around
anymore. This is the spirit that will let her follow her dreams despite her
This determination has her eating already – when last time we left the hospital
after three days and she had only eaten some jello, and a Three Musketeers bar.
Today, she already had some bread, peaches, jello, watermelon, rice and lots of
fluids. She knows that she will have to walk tomorrow… and continue to eat…
and that it will be her own courage that gets her out of here on Thursday
instead Friday. Based on what I saw today, she’s going to do it.
Tonight, it is just the two of us… watching Glee and enjoying some specialty
treats from a Beverly Hills chocolatier delivered from some dear friends. I
can’t really find the words to describe this…. some of them would be relief,
pride, resignation, excitement…..gratitude. She really was remarkable and I
pray that tomorrow will be more of the same.