For Valentine’s Day this year, Brian and I went to pianist Paul Cardall‘s 2nd Celebrate Life Concert. If you are new to this blog, Paul Cardall is a heart transplant recipient and family friend. He was born with a congenital heart defect that nearly claimed his life the year we met him. Like Patrick, he spent much of his early years in and out of hospitals. He and his family have been mentors, cheerleader, and friends for us since they first heard we were bringing Patrick home.
In September 2009, after a very long wait, Paul finally received his transplant. And the following Valentine’s Day, he started a tradition.. a benefit concert raising money and awareness of congenital heart disease.
While Paul was recovering from his transplant, Patrick was recovering from his ostomy takedown, a long difficult recovery on the heels of our most difficult months with him. As the two experiences are interwoven in our memories, it’s difficult to not feel an emotional investment in Paul’s life as well.
And so I found myself feeling a bit like a proud mother hen watching in awe as Paul performed music from his new album. I was awed to see how much more energy he had, despite being sick with a bad cold. And I was thrilled to see how his face has rounded out and his voice has gained more strength.
And as I watched, I couldn’t help but think how I dream someday for Patrick to have that kind of joy and freedom. That is what we are working for, praying for, saving for, losing sleep over.
This picture, one of my favorites, kind of captures it all.
This is Paul at the top of Mount Olympus, the highest point in the mountains surrounding the Salt Lake Valley. Strong enough to complete the climb. Friends, family, and a loving wife at his side. Celebrating life. (and remembering a few other things.)
If I could wish anything for my son, it would be this kind of freedom.
Lately, I feel as though sometimes Patrick and I live in the land of “no”.
A lot of that is because Patrick is a typical two-year-old right now, exploring his world and testing his limits. So we have the normal no’s. “No, don’t pick things out of the garbage to put in your mouth,” “No, don’t throw things at the other people in church,” and “No, don’t turn that cup upside down.”
But there are other no’s, too. There are safety no’s like “don’t pull your line”, “don’t scratch your dressings,” “don’t play with epi pens,” and “don’t put sterile things in your mouth.” And there are practical no’s like “chew your food before you swallow it,” and “I know that tastes good, but stop eating now, or it will make you sick.”
And then there’s my least favorite kind of no‘s. The ones where I have to try to push Patrick’s limits to help him overcome developmental delays. Patrick’s speech therapist and I had a good talk about this kind of no this week when she tried to tell me I was being “too nice” when Patrick started avoiding the task she had given him. Patrick gets really frustrated with fine motor tasks like puzzles and will throw the pieces to avoid doing them. Or, his desire to chew will become so overwhelming, given that he’s not allowed to satisfy it with eating, that he won’t be able to resist putting a toy in his mouth. Or he’ll be asking me for something with a word that I understand but no other human on earth would guess the meaning of. Or he’ll fall and want me to give him my hand to help him get up, instead guiding him to get up on his own.
In all of these situations, it is my job to say “no” to the limiting behavior and to try, instead, to teach Patrick the wonderful things that he can do if he’ll just stretch his limits a little farther. And to Patrick it often seems that I am a very mean mommy who really likes to say “no”. (This is even harder when someone who doesn’t know is looking on and tells me it’s just his age and he’ll outgrow it and I should just let things be for now instead of being so strict.)
Can you see, a bit, why the image in my mind of Patrick standing totally free and happy and healthy at the top of a mountain… why that choked me up a little bit during the concert?
Patrick’s therapist reminded me that I’m not really just saying “no,” even though it may feel that way sometimes. (Except, I confess, sometimes, I get a little tired and grumpy and really am just saying “no.” I’m working hard to stop doing that.)
Really, although right now our little world has more no’s in it than most, the message isn’t really what can’t be done. Really all of this, every moment of it, is working towards helping Patrick to do all that he can. I’m trying to learn to use different and more positive words to match the message. And I’m working on making our actions match, too.
And so, that’s why this week when the weather was beautiful and warm for a couple of days, Patrick and I took his wagon to the school during his short little break from TPN. I wrapped his belly in ace bandages so the tubes couldn’t get caught and he climbed all over the playground equipment and went down the slides backwards and forwards and pushed his wagon across the schoolyard as fast as he could run until he couldn’t run any further and I had to put him in it the wagon and pull him back home. And that’s why the next day, even though the wind was so strong it almost blew him over, we stopped at another park just because we had the time and the park looked tube friendly and he could go anywhere he dreamed and I could keep up behind him with the backpack on. (We can be quite a sight sometimes, tied together as I try to do what a 2-year-old wants to do.) And that’s why, when I took him with me to a Relief Society activity at the church, I spent most of the time we were there following him as he discovered running in the gym and sliding on the floor and pushing the button to make the drinking fountain go, instead of making cake pops and handmade cards and visiting with the other women that were there, like I’d planned to do.
Why? So that Patrick gets to do all that he possibly can do and can escape as often as possible from the land of no.
So someday he can conquer his own mountains.
If you’d like to know more about Paul’s story, check out his blog at beforemyheartstops.blogspot.com
Patrick Hoopes 