Reflections and Resolutions

Alas, the Schrooten B & B is officially closed. Well … technically, my house is a “B & Make Your Own B”. I provide the bed, you provide your own breakfast (lunch and dinner). Much thanks goes out to my sister and brother-in-law from NJ - they kept everyone well fed - which was no small feat considering that I not only lack cooking skills, I also lack cooking “equipment”. Oh well … they know cooking equipment, I know medical equipment. We all have our area of expertise.

As we leave 2006 behind us and start a new year, I realize after much reflection (and after d-r-a-g-g-i-n-g my butt up that mountain earlier this week) that it’s time to get back into shape – physically, emotionally and spiritually. Without a doubt, last year took a toll on me - it was one of the toughest years for me since Jack was born. It was a particularly difficult year for Jack – as he spent the first half of the year fighting one respiratory infection after the other, and you all know how he spent the second half of the year. As for me, all I managed to do last year was simply get through it, without any clear direction, purpose or plan. “Lost” best describes how I felt for the majority of 2006. In case you haven’t figured it out yet, I’m a planner. In fact, I practically had my whole life planned out the day I was born . . . just ask my mom. The downside of being a planner is that you tend to be inflexible and resistant to change and when the inevitable change occurs, it hits hard. In addition to the trauma of Jack’s surgery, there were a few other things in particular that made 2006 a “lost” year …

One of the most difficult changes was the dismantling of the team of doctors who have cared for Jack over the last 7+ years. The reason for making the 3000 mile trek between Phoenix and St. Louis is not because we enjoy the scenic drive so much, it’s because of the incredible team approach we’ve always experienced at St. Louis Children’s Hospital. The doctors at SLCH aren’t only about their “part” of Jack, they truly work together as a team – they coordinate care, they share information and they actually talk to each other about Jack. For the most part, Jack had a remarkable team of doctors caring for him in St. Louis. Sadly, our team is no more. The first to leave us was the “captain” of our team - Jack’s pulmonologist. Jack had the “best of the best” in Dr. Pam – an expert on kids and vents, a true advocate for her patients, a force to be reckoned with and someone who could make things happen. I’m still trying to figure out how we will manage without Dr. Pam (she’s in Florida … quite a ways to drive - not that I haven’t considered it!) We also saw the departure of Jack’s ENT, as well as our favorite Intensivist. I have become very attached to (and dependent on) a few of Jack’s doctors, including two of those who left last year. It’s been extremely difficult on a personal level knowing that they are no longer available to care for Jack. We’ve not only lost our team of docs, I’ve lost my security blanket. I always knew in the back of my mind that if I didn’t get the care I expect for Jack here, I could always load him in the car and drive East. I now find myself in the uncomfortable position of having to look to the doctors here to manage Jack’s care - something that hasn’t worked the last 4 years and isn’t likely to change in the future. I’ve already had a talk with Jack and told him that he is done with doctors and he just has to stay healthy. We’ll see if he listened!

The other difficult challenge of 2006 was trying to figure out what I’m supposed to be doing for Jack. The first few years of Jack’s life we had countless goals to work towards and the hope that he would achieve them. We kept busy trying to get past “this” so that we could move on with life as we wanted it to be. Getting off the vent, walking, talking, eating … all of the things that consumed our earlier years are but a distant dream. Then there was that whole anoxic event thing and working towards the recovery from that. Today … what is there to work towards? Jack doesn’t attend school and the services he receives at home are primarily entertainment. It’s not as if he will ever hand in homework, take a test, or graduate. The planner in me struggled to find some direction, goals, and purpose.

So, I begin the New Year still somewhat lost, but with the resolve to let go of the need to always have a plan … to allow myself to simply enjoy the journey and not worry about the destination. I resolve to live life, not merely exist. I resolve to look at the view. I needn’t look too far to find my role model. He is that wise soul who “gets it”, who lives in the moment and who is happy ... I need only look to Jack.

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I close this post by sharing a portion of a video that we put together for the Tracheostomy.com Pediatric Conference held last summer in St. Louis. We can all learn a thing or two from these very special children - each one of whom started out life facing greater challenges than most of us will face in a lifetime.*



*If your child is in this video and you object to me sharing it on this forum, please notify me and I will remove the video. Thanks.