Saturday, February 23, 2013

This is living.

  {A good dose of perspective goes a very long way}

Shortly after Wyatt was born we knew he would likely have challenges in his life. Some possibly big and life changing. But I never thought twice about that part, to be honest. It wasn't something I ever focused on or had trouble accepting. His life was, and continues to be, something to celebrate.

As parents who love immensely, we acknowledge our emotions, feel and recognize. I know well the course of emotion that one goes through while processing setbacks and life altering situations. I feel like I should be a pro at this! There is certainly a lot we can not change. Nor can we fix. But do you know what? I believe we do have choices.

We all have so many choices in this life- what to eat. What clothes to wear. Where to live. Who to love. Hobbies. Friends. The list could go on and on. I believe we also have a choice in how we view a situation. At times, it's all in how you choose to see something. Much like the old cliche- is the glass half full or half empty?

I have had many conversations recently when someone has asked how Wyatt was doing and I didn't know how to appropriately respond to them. Even when speaking with his doctor that knows the situation so well- there are the times when so much is going wrong that I don't even know how to begin to explain it to him. But in general, possibly for my own sanity, I don't focus on the bad, wrong or scary. I will often say- he's not doing too well, but he did open his eyes for a few minutes! Or he was awake for 2hrs today! Or he is only requiring 4 liters of O2 instead of 6. More often than not, there are always small victories to celebrate. Always. We can choose to see them, when most others can not. This could be an annoying asset of mine or it may be a fault- I suppose it could be debatable. 

Now, obviously, that's not to say we don't have times that we feel overwhelmed and/or weary, our spirits low and/or totally broken to pieces. I certainly do! And I've written about it many times here.

But, it's also true, that we choose to smile more than not. To laugh a lot. And to love so deeply. 

We choose hope, even in the midst of what seems a hopeless situation to many. We choose to feel and see the joy. We choose to celebrate the victory, no matter how ridiculously small it may be.

We choose to live. We choose to push the limits- look beyond boundaries.

Since coming home in June, after gathering around a small conference table and hearing our son's doctors confess that there is nothing else they can do. Verbalizing that our son's body is failing, each of his organs failing. We all expected to have a very short time before watching him take his last breaths. So, we brought him home and we waited. I frequently reminded him how much we and so many others love him. Enjoying the moments we had when he would wake, no matter how brief they may be. We were cautious not to stress his body more than it already is, with the fear of inadvertently rushing this precious time in the back of my mind. I was scared.  

We were waiting for our son to die. 

Wyatt was waiting to die.

It took me a little while before I began to question what in the world we were doing. I didn't just want to wait for my son to die. I wanted him to live, while he had the chance. I was still apprehensive, but it was clear, deep within my heart, how I felt. No turning back. No regrets.

We can choose to live. Or wait to die.

I choose to live with my son, while we can.

Going on trips. Going to events, the movies, the mall or sporting games. Sitting him in a pool of water in the middle of our dining room to splash and play. Spinning him in circles in his chair as fast as we can make it go. Wild pillow fights and bumpy rides through the backyard with the speed turned all the way up on his wheelchair, mud caked in his tires. Singing loudly together as if no one else can hear and dancing as if no one is watching. If only 5 minutes of fun before he's sleeping again or in too much pain to continue- those 5 minutes are better than none. We ask Wyatt the question "Was it worth it?" a lot. And at least 98% of the time he answers with a resounding "Yes." The pain and days after, that he then sleeps, we plan for. We know his body needs that time. But it's worth it to him to have those moments of fun, living. Looking at the big picture, if we do or don't do these things, his body is still failing and our time is still limited. The ending will be the same either way. But living is worth it.

I choose to see the beautiful, the amazing life. Do you?

This is living. 

{I had completed this post and was planning to share it for awhile now. Currently, Wyatt is struggling. But he is resting more comfortably at the moment- let's focus on that. We started two antibiotics last week as he's growing multiple types of bacteria again. It was decided this week to then switch one of the antibiotics to a different type and increase the dose considerably on the other as he has gotten worse, not better. Now we wait for these antibiotics to do their job. I hope to update more fully soon.}

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  1. I love and appreciate this post. Many prayers for adventurous days ahead for your entire family!! And prayers for everything you may encounter in the future.

  2. Your words are unquestionably beautiful and full of so much wisdom. Thank you for being real, being honest and showing us all how precious life is. Your family is daily in my prayers. Wyatt is truly blessed to have parents like you that choose to live no matter how hard it may be. May God continue to give you the strength you need to be the mom He has called you to be. You inspire me.

  3. What a beautiful post! You continue to be in my prayers and you are such an inspiration! God bless you all.
    -Kathryn Michalski