I'm a never give up type of person and I am trying to teach
my children to have perseverance. That's not to say that I don't let them fail –
I believe there is a lot to be learned from failing. And in some respects
failing and perseverance go hand in hand.
So after six years of conversations and trying new things
and retrying old things and working with doctors, a nutritionist and a feeding
therapist and Brett still not gaining enough weight it felt like a crushing defeat in
October when his doctor said it's time for a feeding tube and I had nothing
left to battle with - just tears.
Brett's cerebral palsy impacts his muscles. For him the tongue and jaw are part of that. So eating and drinking that come so naturally to most have been a lot of work for Brett. He has done great and come so far. But the spastic part of his cerebral palsy also means that his body moves involuntarily - all day long. So all the hard work expended to eat burns the little calories he consumes and then his body just works and works burning even more.
I have talked to my friend who has worked with children with
CP and feeding tubes, I have talked with a mom and nurse whose child had a
feeding tube. I have listened as therapists have assured me that time and again
parents always wish they had done it sooner.
It is a strange place to be - caught between logically
knowing that you have done everything you could and you are making the right
decision and having it compete so strongly with the emotional response that
screams NO! Try harder. Do more.
It is that side of me that remembers praying and begging and
coaxing a 4 lb baby to take the smallest amounts of milk so
he could come home from the hospital. We celebrated 13 long days later when the overnight nurse
said he had done it and he did it for me again that day. It's the side of me
that sat with special tools stimulating different parts of his
mouth to build strength. It's the side of me that has sat face to face with
this boy for six years slowly feeding him and praising when he
drank one more ounce or ate just one more spoonful. The side that wants to high five everyone
when Grandma or one of his aunties announces he ate beyond his usual amounts or
actually ate something new. The side that delighted when we finally found a new
food he could process and liked that was good for him and might add meat to his
bones – like peanut butter on crackers. Together with Tate and our family –
Brett's pit crew – so many of us have given time, heart and soul to the pursuit
of packing on the pounds.
The feeding tube has been brought up many times. My argument
when doctors would say "failure to thrive" was that he was thriving –
he is thriving. Despite the work and the struggles – He. Is. Thriving.
But he is getting so tall and the rest of him isn't keeping
up. He is in the 50th percentile for height on the CP chart and barely makes it
on the chart for weight. I believe there is a difference between failure to thrive
and failure to grow. But, that’s just semantics. Either way it feels like
failure.
We had a family weekend away this summer and Peyton was
enjoying taking pictures with my phone. I was so startled when weeks later a
picture of Brett lying on the bed with his shirt off popped up on my computer
screen. He looked skeletal. It scared me.
So here I am trapped between taking a faithful step forward toward
what feels equal parts right and wrong – relief mixed with defeat.
After all the wrestling with logic and emotion – no
matter how much research I do and how many prayers I send up – I know it is
time. I know that sometimes failure and defeat can lead to good, productive, life changing places.
My prayer is that all the words of encouragement I have
received will one day prompt a post that does say - 'I wish we had done it sooner.'
I pray that Brett will grow stronger and have the ability to
do or try more. I pray that Brett getting regular doses of his medications
through the tube will result in him feeling better more consistently. I pray
that it will result in the removal of mealtime struggles and stresses replaced
with time to play and more joy.
I pray and trust that six years of effort only to end up in
the same place will results in something better than what I can imagine
I pray for the day I will say what looked like failure ended up as victory.
