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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Wednesday, February 13, 2013

Love abounds.

"Mommy, I really, really, really, really do love you." Those words began a playful competition between Wyatt and I as we lay snuggled together. Which one of us loves the other more, as the amount of reallys grew in number and then changed to multiplying our love by large sums. It ended with "I love you X 25 trillion."

Conversations such as these make it so obvious to me why we continue to fight. Continue to live. Continue to put one foot in front of the other. This boy, though very different than he used to be, is such a light. His heart so full of love, not just for me, but for everyone he meets. His compassion is remarkable. These qualities within him could change the world.

He often doesn't recognize how sick his body really is. As he prays for others each night, including God himself, he's never asked to be different or for his body to be well. In his prayers he typically only asks that he not be scared or have bad dreams. He accepts the life he's been given and is genuinely happy to just be here. Defying the odds over and over again.

Wyatt appears to have another infection within his bladder. We suspected the re-occurrence of hallucinations could be related to an infection and decided to culture yesterday morning, just as he began to show us his usual indicators. He's running a tight schedule between these infections recently- one after the other. They hit him hard and fast. We're waiting for the final read on the culture, particularly the identification and susceptibilities of the gram negative bacteria that is already growing. We're hoping his body can hold it together until we get the correct antibiotic started.

We also have a fun evening planned for tomorrow night that he's been looking forward to- he would be so disappointed if he were not up to going!
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Monday, February 11, 2013

Germs, Germs- go away.

I woke early this morning as I do many other times throughout the nights- with a chilly little, slightly fisted hand slowly dragging, tremoring, up my body before attempting to shake my shoulder, but missing his mark. Instead he gently smacks me in the face a few times before I take his hand in mine and stop the movement, while asking "what's wrong?". It's usually a complaint of pain or to tell me he's scared.

This morning was no different. Except he was somewhat hallucinating, seeing scary things that were not there. He hasn't done this in awhile and I'm not sure what could have stirred it up again. I tried talking him through it gently before getting a little tough, being completely honest I explained his mind is playing tricks on him. The scary things are not there. Reminding him that I was laying right beside him and would never just lay here and let the scary things get him. After gliding his hands over my face to make sure I was his "real Mommy," he clutched my hand and began repeating over and over "Mommy is right here. Mommy is right here."

He eventually fell back to sleep.

Years ago, as I cradled my baby in my arms and rocked him to sleep for what felt like the hundredth time some days, never did I think that one day I'd be talking my child through hallucinations of any kind. It could be one of the toughest parts of this journey: To watch as his mind's ability to function falters. And knowing we can do nothing about it.

Last week, after posting about the occluded lumen of his central line, we packed the boy up to visit the ED (emergency department). After being sick myself, the Children's Hospital ED was just about the last place I wanted to be. It could easily be the germ-iest place of all time. And I was just beginning to feel somewhat coherent again. Hours later, after nearly draining the nearby Purell dispenser from use and day turned to night, we walked out of the hospital doors to make our way back home, with a central line that again had two flowing lumens. By early Tuesday morning I was sick (again)- this time with the stomach bug from hell. I suppose my immune system, just getting a handle on the crazy infection from the week before, was no match for the germy ED. I can't remember the last time I was ever that sick and for nearly the entire week. I suppose I was overdue, as I also can't remember the last time I ever needed antibiotics or was sick with anything other than a cold/upper respiratory virus. Bryan, again, held everything together as he took care of Wyatt and I both. He is pretty darn great.

This morning, as I was catching the hospice and infusion nurses up on the goings on, I received a phone call from the school nurse. Jilly is now sick- 102 fever and an aching body.

Is it spring yet?

Now the tricky part comes- to quarantine her and her germs away from the rest, especially Wyatt. My lysol wipes are going quickly these days!
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Sunday, February 3, 2013

I'd like a time out, please!

I'd like a time out, please! Wouldn't it be nice if life worked like a sports game..?

Since I last posted I've been sick with an infection that went crazy inside my body. Knocked down with lots of antibiotics, pain medicines and feeling pretty darn rotten. Wyatt and I slept next to each other for hours on end the last several days (I wasn't contagious) while Bryan held down the med schedule and his care. My doctor recommended I go to the hospital for IV antibiotics, but after explaining our situation he was understanding and we decided to try doubling up on oral antibiotics first. It seems to be working- I think we're heading in the right direction. I then woke this morning to Bryan struggling with Wyatt's line. The blue lumen, his med line, is now completely occluded and we're unable to use it at all. So frustrating! We were to TPA it earlier in the week but I became sick and wasn't able to remind his doctor to order it. We're currently waiting word on what we need to do to fix this as soon as possible. Until we do, Wyatt is unable to receive any of his many vital medicines. Please say a prayer that this is easily (and quickly) fixed!
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