After the experience of living in the hospital with Jax for a few weeks going through the feeding clinic, I realized a few things. Not all families can have a parent with their child throughout the entire day, and not all children have many belongings with them.
I did notice however that the few parents I was able to speak to, were all too familiar with the hospital and all the various medical issues that land them there, and with a tube inside their child.
You can see the hope and fear at the same time in their eyes. They're trying so hard to be strong for their child, while wondering if it will work, while watching their kids go through agonizing sessions of fear repeatedly over and over each day while being inside an institution. No one ever said, "why me?", they just wiped away any tears and cheered each other on in the parent lounge with every news of an eaten bite, or swallowed liquid.
I find myself wondering time-to-time who is going through the program right now. I wonder if they're making strides, beating odds or if they're struggling.
We were extremely lucky to have such great results, and even more lucky that Jaxon thought he was at a fun camp rather than institutionalized. He of course had some very tough days of therapy and starvation, but he forged through. He is still forging through at home as an outpatient who consults each month (and mom via phone to the docs). The fact Jax uses his MOUTH now to consume anything is life changing - the program is life changing. Programs like this are not very old and are developing to be better and better every year. With the medical advancements of kids getting a chance at life by living off feeding tubes as babies, and then learning to live without them once medically stable is something totally new in the past few decades. Even children being able to be mobile while on a feeding tube is completely new and life changing. We are so lucky in this regard.
We still fight the good fight every day to continue moving forward, but I can't help but to look back and wonder how the other kids are doing. We were so blessed to have so many amazing friends send Jaxon a toy, a card, a balloon or even just good thoughts through phone calls or messages for me to read to him. He was so excited each day to see what else was coming and I swear it lifted any cloud in the room from the struggles and tears that day.
In honor of this amazing progress, we're throwing a "Carnival of HOPE"
along with the boy's birthday party. We always said we'd have a big
party if Jax ever started to eat, and well, it's here. His road to learn
how to eat everyday food (non-puree) is still far off, but there's an
end in sight of his feeding tube (he uses it for one feeding at night in
bed). Let's celebrate! And what better way than to give back?
Generosity and empathy will be early lessons for my little guys.
Please help send encouragement and hope to all the kids going through this life changing program. They've been through so much, so please help me make at least one of their days a little brighter while they work on their own miracles.
An Amazon wish list has been created and accessed HERE, and will stay at the top of the blog through the boy's birthday in July.