A note from Mommy:
Today I ordered a custom t shirt for Peyton. Zazzle.com and Cafepress.com have some cute tshirts already designed with sayings about trachs, g tubes and all other things medical. Although many were funny, I decided to create one of my own sayings and put it on a pink t shirt.
Trachs aren't for sissies
Travis and I decided early on that if we don't keep a sense of humor about our lives how would we ever expect Peyton to? So we make jokes about everything even when to the average person it may not be funny. Constipation, trachs, g tubes, trach secretions, vomiting, diarrhea, deafness, aortic valve disease, hand abnormalities, jaw distractions. Nothing really funny about any of it at first glance.
As I was creating the shirt I was thinking about Peyton and all the not so fun things the trach has meant for her. She is definately no sissy and has taken it all in stride. But as I got to thinking about it more, I probably should have created tshirts for Travis and I and all our family and friends. After all, we aren't sissies either. Although she may be the one with the trach - we are all on this path with her every step of the way.
I have always had a love/hate relationship with the trach. I understood the reasons for her needing it. Just about anything they would have asked us for permission to do to keep her alive I would have agreed to at that point. But I heard what I wanted to hear and when they said they could do a jaw distraction around 9 months to a year old and potentially get the trach out I clung to that as if it were a lifeline. A year with a trach - no problem. I could do anything for a year. And then that mantra replayed itself in my head every day for the next year. I had a mental countdown running at all times. Only XX many days until we get the trach out. When we checked out two other surgeons for the jaw distractions they were much more conservative and getting a trach out after the first distraction was a maybe - not a for sure. Her first distraction process was completed shortly after her first birthday but we were heading into the cold and flu season. Even though her airway looked good, the recommendation was not to decannulate immeadiately. She had so many more surgeries to go and even with a jaw distraction her jaw and airway were so small that most anesthesiolgoists would be hesitant to do any non emergent surgeries until her airway was bigger. At that moment, I had a break down in the car ride home from Palo Alto. I was distraught. I had planned on a trach for a year and when that magical date came and went I didn't have a road map as to where our lives would go now. Suddenly, I had to redefine her life because now it would include a trach much longer than I had anticipated. And in redefining her life it meant redefining my own.
It was almost like a death for me. Most parents probably grieve for the loss of their "perfect" child earlier on in the process. I just delayed my grief a little longer I guess. I had fooled myself into thinking that the trach was preventing us from living our lives normally and we had to do whatever we could to get it out as quickly as we could. After my good ole cry in the backseat sitting next to her, I came to the slow realization that the only thing preventing us from living a normal life was me. I had to get to the point that I accepted what the trach was and what it wasn't. It was a piece of plastic that allowed my daughter to come home and live a happy (but more complicated) life. It was not a barrier to her experiencing life unless I allowed it to be.
So I am a slow learner (Travis had known this all along of course) but I did eventually get the message. It has been a gradual process but I have fully accepted the trach as a part of our lives. In fact, I have had several discussions around keeping it in longer then she might need to get a few more surgeries done that probably could wait a few years. In the last year and a half we have done many things I never could have imagined as I sat there sobbing in the back seat of the car that day. But we've done them. And we will do many more things with the trach in tow. She is not defined by her trach. I am not defined by her trach.
Feeding therapy has been quite the challenge for the last six months or so, not because I don't want to eat but because I only want to eat about five items and refuse to try anything new. In the last few weeks, though, that has changed a little. Suddenly, I am willing to try some new foods. Today, I started chowing down on a Velvetta cheese slice. Now, I only took a few tiny bites but Mommy was still thrilled. When my food choices are limited to crackers, cookies and ice cream adding a new item is a big deal!
