Ten Years

Ten years. We did it. They told me he wouldn’t make it, but he did. We did. Together. Me and Parker and James. ❤️

Tomorrow, March 10th, it will be six years. It amazes me how Parker's illness continues to define our lives, even though we vowed it would not. Some things you can't control. That's one of them. What we can control, we do. Like health, and happiness, and being grateful every single day for the miracle of life, for understanding how the struggle we went through changed us for the better, because now we look back on it, 2,190 days later, and know we will never be the same, but that never-the-sameness comes with huge blessings.

My sons, both of them, are my miracles. Since Parker's illness my younger son, James, moved to Austin, has a great career with Apple while in college full time, and continues to be our steady rock, a part of his personality that emerged during his brother's crisis. My father passed away; my mother is thriving in a retirement community she loves; I sold two books to HarperCollins Children's; and moved to Jackson Hole, Wyoming, the place of my dreams.

Parker has made great strides in his recovery. It took a long, long time for his central nervous system to reboot after the weeks and weeks of being medicated and on the ventilator. His path has taken some twists and turns he didn't really want, but he has risen above every challenge and is marching forth with optimism and that famous courage that saved him.

Since his illness, we are stronger. We love more fully, we appreciate with greater abundance, we never, ever forget the generosity and kindness of strangers, and we give back every chance we can.

Blessings. So many blessings.

Almost five years have past since that first horrific night when I got the phone call all parents fear. Parker has recently started writing a bit about his experience during the long months of his illness and recovery. Below is a short essay he wrote about his recollection of the first day he stood up again.

COLD FLOORS

by Parker Steveson

I liked night time the best because I could finally rest my mind. It was always quiet in the halls, and anyone staying in the room with me was either reading or asleep. I would sit up and think. Think about walking an extra two or three steps the next day. Thinking about the day I was going to walk out of there.  

I enjoyed the OT and PT sessions quite a bit.  It was the only time I was able to get out of the bed and actually walk without four people worried and holding me.  They wanted me to learn how to not fall.  They were always so encouraging, too.  I can’t think of how many times I was telling myself I couldn’t do it, and instead of being mad at me, they just said they understood but hey, let’s try.  And I would.  And I would succeed.  Whether it was moving from the bed to a chair, or the first time I stood up in two months.  

That was a hell of an experience. Re-learning how to walk might have been the hardest thing I’ve done in life.  The physical part hurt, but the mental toll that was taken…  For days, the PT people had been telling me, hey, three days, we’re going to stand up. And I would say yeah, we sure are, and I had these images of me standing up, saying bye, and walking out the door. They didn’t think I could. In fact, they were pretty sure I wouldn’t, couldn’t, and they expressed this.  

Hey man, we’ve got two days till we walk. You ready for that? I’d smile, Oh yeah man, I’m ready. I was still confident that I’d do it, no problem.  Then we tried sitting me up, for just 30 seconds, and that hurt like nothing had before.  Every muscle below my shoulders came alive and caught fire.  It took everything I had to not scream out and give up.  It hurt.  A lot.  

When I was laid back down from the seated position, I was finally able to exhale the breath I had taken in when the searing started in my muscles. At that point, I realized it wasn’t going to be that easy, but I would still be able to stand up and walk around just fine. 

Wednesday, May 21^st, 2009.  The PT guys came in.  Lindsey and Martin. Today was it, we were standing up and I was walking on out of this damn place. We got me set up, which wasn’t nearly as horrible as it had been the day before. I guess everything was awake and fired up. I moved towards the edge of the bed and I slid until my feet hit the ground. Wow that was cold. And hard. For two months I’d been wrapped up in blankets and had air pumped into the $3000 mattress I was laying on. The ground was not like that all. I remember feeling intimidated by it. Weird feeling, being intimidated by a floor.  

Lindsey and Martin each had one arm, and another OT guy was behind me on the bed. Together, they all lifted and I was standing. Holy fucking shit do my legs hurt. It felt like when I was seven, getting bitten by a million fire ants all at once. I fell backwards onto the bed, into the dirt on the ground outside my grandma’s house in east Texas.

I remember crying. Sitting on the edge of that hospital bed, having stood for maybe 3 seconds. My knees never actually locked, my legs were never straight, so I didn’t think I’d actually stood. They asked me if I wanted to do it again, and my brain was screaming no, I will kill you if you do that again.  Too much pain. But something, somewhere, made me, and I stood up and straightened my legs for 30 seconds. I slept for the next five hours.  

We are coming up on the five year mark. Hard to believe, so grateful to God and all others who helped us through Parker's illness and the struggles in the years that followed. We are basking in the Light and moving on. Not without challenges, not without residual effects for all of us, not without haunting memories. But we are now living in that bright future we only dreamed about before.


"Lord, purge our eyes to see
Within the seed a tree,
Within the glowing egg a bird,
Within the shroud a butterfly,
'Til taught by such we see,
Beyond all creatures, Thee . . .

~ Christina G. Rossetti

Two Years Ago Today

Two years. We will never forget.

Happy New Year!

It was a year ago today that Parker had his last surgery. A year feels a whole lot longer than a day, or a week, or a month.  It is a far greater milestone. It represents 365 days of success, 365 days to put this behind us and look ahead.

Tomorrow we might wake up with a greater sense of relief. We will never be too far from wary, but maybe it will begin to come with a gentler touch.

Rest for the weary.

I love you boys. Happy New Year!

Happy Day to My Beautiful Sons

November 14, 2010

Parker turns twenty-seven today. 

I am struggling to find the words to express how grateful I am for this seemingly ordinary milestone. As a writer, this should be easy. But the days when more birthdays were uncertain are not so far behind us,  and still prey on our minds.

Although some of the emotional effects of his illness linger, Parker has begun a new life, full of hope and possibility. We know it could have been the other way, and for that we are eternally grateful. 

Lord, purge our eyes to see / Within the seed a tree, 

Within the glowing egg a bird / Within the shroud a butterfly:

Till taught by such, we see / Beyond all creatures, Thee.

Happy Day to my two beautiful sons, Parker and James.