Tuesday, November 12, 2013

The strength of a superhero.

March 2012 -- After a little encouragement and coaxing, Wyatt stood on his own two feet, under his own strength. A metallic blue walker displayed around him, numerous tubes hanging from various parts of his body, he stood alone and by himself for the first time in 6 months.

In the months leading up to this he talked for quite some time about walking again. It's all he wanted to do. He longed for the freedom to walk across the room again, under his own power.

Something you and I may not even think of as special most days. 

He was hesitant to try that day, convinced he wouldn't be able to do it. But I remember looking in his wistful eyes and telling him he would never know if he didn't try.

We had been practicing sitting on the side of the bed. He worked first to just hold his head up and keep it from hanging and looking down. Then, as the weeks passed and he became stronger, he started to balance and stabilize his torso as his feet rested on the floor. As I was playing the role of 'physical therapist,' I would lay him down, holding his legs and feet in my hands to stretch him out. He'd kick and try pushing me away as hard as he could. Some days he could be quite strong! 

These things may sound simple, playful even, but it was work to make his muscles respond how he wanted and wished them to. He was weak, his muscle tone was a combination of extremely floppy and/or tight and he would sometimes shake as we encouraged him to keep trying, making sure he knew what an accomplishment these things were.

He would groan and complain with a smirk, in the way Wy always would when he was knowingly being difficult. He found enjoyment in being irritable and ornery sometimes.

Then, on that day at the end of March, he did it. He stood by himself, smiling even! He was so proud as I took these pictures. He went on to continue practicing and in a few weeks time he began taking small steps across the room without his walker. I would hold his attached bags, push the IV pole beside him and prepare to catch him if he should lose his balance. (My multi-tasking skills at their finest.)

It was a short time later Wyatt's body began to steadily decline no matter what we did to help him. It was that June when we were told there was nothing more we could do and we brought him home.

We then watched as he rallied his way through an entire year, 15 months to be exact. Birthdays, Halloween, a trip to Disney World, Thanksgiving, Christmas, a new year, Valentine's day, a trip to see the circus, the Harlem Globetrotters, to Washington DC, Easter, a Phillies' game, school concerts, a field trip to the aquarium, Maggie's musical, multiple trips to the movies, Chuck-e-Cheese's, the complete construction of a clubhouse fit for a superhero and another set of birthday celebrations. As many times as he had me worried that last year; juggling infections, antibiotics, respiratory requirements, his intense med schedule, and as many times as my stress level was far beyond a normal limit for one reason or another, when I look back on it now I can say I would do it all again. Sure, there are things I would have changed -- hindsight is always 20/20. And it certainly was not easy. But I don't regret for one second doing it all so that he could enjoy his life for as long as he was living. That's all he really ever wanted.

He just wanted to be a kid.

July 2013 -- On the evening of his 11th birthday party Wyatt saw Heaven. He was happy, surprised, seemed relieved even and excited to tell me about it.

"Mommy, it's real!" he expressively shared with me. 

That was the evening he decided he wouldn't use the ventilator anymore. We emailed the doctor asking his opinion that night. I honestly was hoping the physician would respond in the way that I wanted him to, so I could convince Wyatt that using the ventilator was in his best interest. But instead I received the emailed response that I expected from him. I can't say I followed my boy's lead without a little reluctance and even some fear. Fear of the unknown path that was laid out before us, I guess. It's hard.

So hard. 

But then there was a moment, after weeks of watching him struggle to breathe with using only supplemental oxygen, that I talked with my son. In that heart to heart conversation that we shared I gave him permission and the control that he never had before. Possibly the purest form of quality of life in my eyes now. It was the first time in his life that he could choose what he wanted or didn't want anymore.

And he was happy.

I miss him as much as I love him.

Both more than I can express with words.

I have found I do my best thinking these days when I'm nearly killing myself on the treadmill or in the van driving. It's also those times, when I'm sorting out my own thoughts and emotions, that the tears seem to come a little quicker. Recently, as my muscles were beginning to beg for a little mercy, I started to think about strength. There are different kinds of strength, I guess you could say. Different definitions even. But the strength I wish to have in life is that which my son showed and lived every day.

How did he do it? 

When I look at some pictures of him it's difficult to see and focus on the boy behind all those tubes, IV lines and the large amounts of equipment surrounding him. He was weighed down so heavily by it all. Mitochondrial Disease took nearly everything he had by the time he learned to walk again or even more when he was sent home to die...but he rarely questioned. He didn't hate the life he was given despite all he was put through.

April 2011 -- It was just six months before we were introduced to hospice, Wyatt had the opportunity to play on a little league baseball team.

One of the best times of his life, I'm sure he'd tell you. 

He would arrive in his child sized, shiny red power wheelchair and park it next to the dugout. He ran the bases at his baseball games with tubes hanging from beneath his team shirt and two drainage bags that were draining bile from his failed intestines secured around his waist. We disconnected his IV nutrition infusing through a 'permanent' IV line that was tunneled and threaded through a large vein in his chest just long enough for him to play before reconnecting him. I vividly remember standing next to the dugout watching him come in off the field during one of the games, he quickly made his way to his oxygen tank and the attached nasal cannula. He sat on the worn wooden bench, took off his baseball hat and was breathing heavily. He put the cannula under his nose, holding it there with his hand, and looked at me to say, while exhaling and with a smile, "I really need this!" That particular game was hard on him, I could see his body was fatigued and we knew he'd be in pain and pay for it all later. The thought did cross my mind if I should suggest he stop playing that day. But I'm happy I didn't. He loved and lived his life. He never gave up.

That's strength. The true kind.

That's the kind of strength that you can't create by training or exercising. That's the kind of strength that is deep inside you and part of your every being. That's the kind of strength that comes from the heart and the depths of your soul. That's the kind of strength I can only wish and strive to have some day.

In parenting a superhero, my favorite superhero, I've learned many things. I wrote about some of what I've learned here many a time. But when I sit looking at these pictures and thinking back on these different moments and memories of Wy's life, I realize I could only hope to know as much as my son someday. To believe as deeply as my son. To be as strong as my son. To be as trusting and loving as my son. To live like my son.

In some way, it's as if he knew the secrets of life at only 11 years old.
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1 comment:

  1. Ashley-

    You( and Wy) continue to inspire. I hear my own thoughts echoed in your words. I pray I never need the strength you have shown over the past few months. I wish life had been different for our boys. I am so grateful for the positive example you are. Always in my prayers.