Over the past two years I have found comfort in the most unlikely
places, in a world I never knew existed, with items I did not know how to say
or spell just two years ago. One of the most challenging things we had to
do for Sonzee was get her a feeding tube. To do so we had to overcome our
doubts, our judgements, our misconceptions, our fears, and all the negative connotations
that come with a piece of medical equipment used to feed a child. I
personally struggled with what people would say, how she would look, the fear
of her never eating by mouth again, and the fact that even though I knew deep
down it was necessary, it was not so obvious to others, creating a huge cause
of disagreement between Sam and me.
It is almost a
year from the day we nearly lost Sonzee while in the pre-operation room waiting
for her gtube to be placed, immediately we doubted our decision leading me to
want to forget the day that led to this
post. I wish the memories of that day were not so vivid in my mind. I will not ever be certain that the chain of
events that were set into motion from that day are not responsible for the battles
she now faces with her stomach. However, I do not know if we will ever be
able to hold anything other than "CDKL5" responsible for the fact
that she no longer can process food in her stomach. The disaster of the
original failed gtube surgery and later complications of the PEG tube placement
did nothing to calm any of the negativity I felt towards feeding tubes, after
all, Sonzee's condition only worsened after its placement. Then in May as
her life hung in the balances yet again, while being placed on temporary TPN,
we had no choice but to allow the doctors to try the intestinal tube that goes
through her nose into her jejunum.
I was vehemently
against any feeding tube that went into the nose and would be on Sonzee's face.
My background in speech therapy led me to know that there was a higher likelihood
of her losing interest in eating by mouth, and the mom in me still wanting life
to appear "typical" to others, knew that a tube on a child's face
would be no different than walking around with a flashing red blinking sign.
It broke my heart to know people would look at her and at once feel pity,
stare, or feel uncomfortable. Ironically 8.5 months later I cannot
imagine her being alive without this tube and the comfort and security I feel
because of the tube on her face for others to see is the opposite of my earlier
fears.
As I take her out
of the car, when I park in a handicapped parking space, I proudly place her in
her stroller with her stroller=handicap blue placard that is hanging. It
is obvious we belong in the spot and that there is something not typical about
her. My fear of stares has turned into comfort and excitement that I will
have the opportunity to spread awareness of CDKL5 and find comradery among
others who have traveled a feeding tube journey. For me, the tube that
goes from her nose into her intestine has become a safety net, one that I am
actually afraid of ever taking away. For her, she does not know much
before the tube, and she does not express any discomfort from it. Her
desire to eat is no less because of it, and she would eat all day if her
stomach allowed her to. While I wish her body did not need this tube for
survival, there will always be gratitude and appreciation towards this piece of
a rubber tubing that continuously saves our Sonzee bear daily.
Mommy bloggers, Join me @ Top Mommy Blogs
No comments:
Post a Comment