Reflecting and Looking Onward

Hello Friends of Team Steele. Welcome to 2016! We were not sad to say goodbye to 2015. I know many families, friends and relationships had to endure many hardships this past year, so año adiós! When we learned about Steele's heart defect almost a year ago (1/26/15), we had no idea how this event would reshape our lives and re-examine our moral inventory. I can only speak for myself on this subject as a parent, you feel an obligation to do everything in your power to get your child home and let them live the life they were given.

This philosophy has a price however, your mental faculties, physical stamina, and your cadence will change forever. Rachel had to leave her teaching position for an unknown amount of time, I took a 12 week leave of absence, we moved twice in California, Ryleigh attended four different pre-schools, and countless hours with medical professionals. All of this rattled my body and mind to the core. There are no easy days, which means you live in the day only. It's a vacuum with no clocks or has the ability to shut itself off. I've climbed high mountains, survived avalanches, and put my body through a grinder, but that pails in comparison to this beast. As I walk around the hospital, you can see a difference between a parent that has just found out their child is sick and has just begun their journey versus a parent that has been through the medical grinder. Again, I can only speak from my experience with both of these faces that I have worn. The fresh faces have this look of overwhelming fear and the second face is calm and collected, but worn down to the bone. We are in the inter stage part of this journey. Tuesday's experience will once again test our families ability to have the strength and courage to pull through this and hopefully come home.

The sliver lining in all of this is how people come together and galvanize a symbol of hope & love for our family. After moving into the Ronald McDonald house in October, I felt really depressed. At first, you hide from all these families that are going through the most difficult situations and their children who endure these treatments, surgeries, procedures and a rigorous schedule of medical appointments. After a week or two, you begin to open up and introduce yourself and your story. This is where the magic of the RMH happens. There is comfort in sharing your experiences with others that have been there or are just starting the journey. We have met some wonderful people and have made life long relationships with a part of life that mostly goes unnoticed by the greater whole. What amazes me as an adult, is how well these kids keep their composure. They are the toughest of the entire lot.

Then there is the support we have received from our friends and families. At first when we were told that we would be moving to California, I struggled for weeks about whether or not to ask for help through a fundraising campaign. I have always been this nomad figure that doesn't ask for help unless it is the last option. A group of close friends in Portland sat me down and explained to me why it will work and reminded me of Steel's goals: "Do everything in your power to make him healthy without any regrets." So far to date, we have over 200 supporters that continue to share Steele's story and are always on that fence to provide our family with help. Thank you all for the donations, artwork, and kind words that are sent nearly everyday.

The last piece of the lining are the faculty, students, and families of Gladstone School District. This past October, the students and staff rallied to raise over $9,000 in support of Baby Steele. You can watch the video here if you have not seen it: https://youtu.be/6Q_ywSHcwRI This part of Steele's Journey has defined what a community is. As a Teacher, this gift was one of the most treasured gifts that our family has ever received in more than monetary means. Gladstone High School is the genuine article of what a healthy community can do to support each other in these challenging times. I think about the strength, advocacy, and honesty the teachers, students and parents are providing to put their best foot forward. Gladstone is a very special place and I am honored to be part of the community. Thank you Gladstone!

Now, Mr.Steele has yet another huge hurdle to overcome. On Tuesday, January 5th, he will go into LPCH for his second open heart surgery, called the Glenn. You may recall when we first arrived at LPCH, he was in real bad shape, I mean the worst possible. We almost lost him. The Pediatric Medical Staff at LPCH have given our family a second chance to meeting Steele's goals for survival. Rachel and I are thrilled that he is able to get the second surgery, it was not even on the table when we first arrived. Steele has the strength to overcome everything that they have thrown at him, so we can only keep that in mind as they wheel him into that Operating Room on Tuesday. As his father, I am still very nervous and anxious about how this will all settle out.

This surgery is going to be challenging for Steele, it will take between 4-6 hours in length and in addition to the Glenn procedure, the surgeon is going to surgically dilate part of his pulmonary artery. Big day for Mr.Steele. Then if all goes well, he'll be back in the CVICU for 1-2 weeks. The back-up plan is to put him on a device that will support his heart and then back on the transplant list. We are all looking for Plan A, but it's nice to know there are back-up options.

Happy New Year to everyone, and as thanks for all your continued support!