A note from Mommy:
As Peyton and I went to a local mexican place the other day to pick up take out, she got the usual curious looks. They weren't horrified stares or anything but I could definately tell the wheels were turning as they checked out Peyton's trach. As I was packing Peyton on one hip and carrying the food in the other hand I got to thinking back to three years earlier. Peyton was still in the NICU and I couldn't have imagined running to go get take out and her tagging along without a nurse or at least Travis in the car.
I've written in the past about her birth story. But I have written very little about my feelings in the weeks and months that followed. Within hours of her birth, they wheeled her in and I got to touch her through the plastic isolette. Then off she went to UC Davis and it would be several days before I would see her again. In fact, that first visit would be the only other time I would see her without the trach. The sign above is what greeted me that first visit. Even with the pink hearts to dot the i's - it was a clear signal of how precarious her situation was. After the trach was placed, it would be still longer until I would get to hold her for the first time. I can see clearly now that for a very long time I was not bonded to Peyton. That's not to say I didn't love her or I wasn't invested in wanting her to survive but I realize now that most of the time the reason I was so cool and collected was because I hadn't let myself attach to her fully. Don't get me wrong there were lots of barriers put in the way preventing me from doing that, it wasn't all my fault. In the first few days I was physically removed from her and then when I was released from the hospital the first few weeks I was recovering from the c-section and the spinal fluid leak. Once I was able to hold her, there was always a nurse close by watching me. And then there was the constant reminder of how fragile she was with monitors constantly beeping and various cords and IV's to keep from tripping over or pulling out. And then she came home. For most parents bringing their children home for the first time you get in the groove pretty quickly I would imagine. But when Peyton came home we had supplies to organize, machines to learn to use and nurses to manage. When a state agency says your child qualifies for 22 hours of nursing care a day that's a pretty sobering thought and one always in the back of my mind. It was a long time before I could see Peyton other than as a "sick" child. I'll never forget the first time I was alone with Peyton - it was at the end of the day when the nurse had left and Travis had not yet come home from work. I was terrified that at any moment she might stop breathing and I wouldn't be able to help her. Every parent probably has some lack of confidance in their parenting abilities but this was on a whole different level. And so despite loving Peyton, I think I held myself back from her just a little just in case...
I remember sitting down to write the blog posting where Peyton "took over the blog". I couldn't sit up for more than a few minutes at a time because of the spinal fluid leak and the awful headaches. But I remember thinking if I just pretend to be breezy and nonchalant as I blog about what has happened nobody will ever know how terrified I am. After all, with all of our family and friends out of state, if I write honestly about my feelings I will scare them and they will feel helpless being so far away. Thank god for Travis for being the rock that he was during this awful time.
In the first six months when she was vomiting more frequently I was beside myself. I figured at any second she would vomit into her trach and aspirate and die. Great confidance builder. It wasn't long before I would start to feel myself getting anxious when I would hear the suction machine start up. I can remember being on conference calls for work in the office and hearing the suction machine in the background and feeling as if I was going to vomit myself. I would have to tell myself that I had to stay on the call - I wasn't allowed to drop the phone and run out to the front room where the nurse was to check on her. With all the suctioning she needed in the first few months I would never have made it through a call! And then the insomnia and nightmares began. When I was sleeping I would have nightmares and go "look" for her in the bed. Travis said this was almost a nightly occurrence for a period of time. But more often than not, I just wasn't sleeping at all. But if you read the blog during this time most people probably didn't realize how close to the edge I was - I don't think I even knew how close to the edge I was.
So fast forward to three years later and how things have changed! I don't think twice about taking Peyton anywhere on my own. I don't worry every night when I put her to sleep that she is going to die during the night. I don't consider her a "sick" child. I don't panic at the sound of the suction machine starting up - in fact there are days on end that we never even use it. So if you are just starting down this path with your child, I promise there is hope. It will get better. It will become your new "normal". You too will look back and see how far you have come on your journey and be able to offer support to the person who is just beginning theirs.