Thursday, April 23, 2015

Is This Real Life?

I had been working on a post since we arrived home from Seattle but my delay in finishing it up was because I thought I had enough time-more beautiful glorious time that we had gained through a very painful experience. But I'm reminded again, that we should not put off for tomorrow what we can do today. And for me that means kissing my kids more, reveling in their youth, telling my parents I love them, loving on Mike, calling up my friends, finding reasons to celebrate, expressing my gratitude and, of course, posting on this blog. :) Here is the post I was working on just days before Ava was admitted for a rapid respiratory decline- one of the scariest moments we've experienced since her diagnosis.
_________________________________________________Post begun on 4/9/15:

 I see that a healthy amount of people are still checking the blog for updates on Ava. I'm so sorry for making you hold your breath! While our days have been flying by trying to reconnect with people and acclimate back to the weather, the house, the community, I have a feeling you, good folk, have been waiting forever for a simple word on how we are doing. Thank you for being so faithful to us before, during, and now after the transplant.

I find myself often wondering out loud, "Is this real life?" as I walk through the day. It seriously feels like I am dreaming. On one hand, I have been gone from this place for what seemed like a lifetime and, yet, it's like we've never left. I appreciate that ability to seamlessly fall back into place to that infinitely glorious time when Ava was healthy and cancer was never on our radar.  And yet, as easy as it has been to jump back into a routine, there is this battle scar that remains from our experience that may never fade. 

Wednesdays are our clinic days and so we usually pack up the family to go together. As I walked the halls of the hospital today, I was hit with the thought that this place has become both my poison and my balm. I hate every reason that brings us there but it is the only place where I feel completely understood without having to utter a word. I have an instant connection with the parent that is walking alongside her child who is tethered to a pole with multiple lines protruding from his body. There's some crazy beauty in sharing a burden so heavily laden with the blood and tears that are shed over the cruel tragedy of childhood cancer. And while I would never want someone to go through this experience, there is comfort in knowing that people have gone through it and that my footprints on this path join in with the many people who have had to walk the same journey. 

So, while there is some amount of post traumatic stress from all that has transpired, the majority feeling is one of absolute awe that we have made it through this crazy whirlwind year of ups and downs with you by our side. I was recently interviewed by Be The Match, an organization devoted to finding a match for people who need life saving transplants, and the interviewer asked me what gave us the strength to overcome such an incredible obstacle. Undeniably the credit goes to God, our Father, who is always with us offering comfort, peace, joy, love, and every good thing even in the midst of our most trying moments. 

And then there was you. You fought alongside us. You cried bitterly for us. On bended knee you prayed through the night. You called, sent mail, coaxed smiles out of Ava, brought meals, lent cars and houses, gave hugs. You emptied out your pockets, you drove to see us, you learned new jokes to tell us. 

As I continued on about YOU to the interviewer, I began to cry. Because, really, this diagnosis of cancer was not a choice to us. It was given to us as the trial that we were ordained to go through. In other words, we did NOT choose this struggle. But YOU, you made a conscious choice. You chose to stand with us when it might have been easier to step away. The pain was wrenching at times, but I felt you there choosing to take the hits with us. I saw you shedding tears, putting together fundraisers, running towards us when our misery should have scared you away. You chose to stay quietly by our side when words seemed too weak to express the sorrow.  

I am in awe of the strength you exhibited, the chances you took to be present when life's storms hit us hard. It must have been hard to know what to say but you stumbled through it anyway. It must have been foreign to know how to express your grief and your support but you found a way to do it anyway. I am so incredibly thankful for every one of you. You are the true heroes, the strong and amazing friends we don't deserve. Thank you, thank you, a million times, thank you. 

On to the update!

How is Ava?
Ava is doing extremely well for a child that has undergone such a strenuous medical procedure. Roid rage, a term coined by shell-shocked parents trying to describe the horrors of steroids, has been a thing of the distant past. Ava is back to her chatty self and is drunk on life! She doesn't waste any time having fun and is usually up by 7 am to start the day. She continues to receive IV magnesium due to all the magnesium that her anti-rejection medication, Cyclosporin, causes her body to waste. This means that she still has her Hickman Line and will not have that removed anytime soon. She is on 11 medications daily. Symptoms of gut GVHD seem to come and go throughout the day so any day without stomach pain and diarrhea have us celebrating with high-fives. She spends her days playing with Gwen and helping out with Jude. The other day I was writing an email to a friend about Ava's need to avoid public places and forgot the term that was used in the hospital for being confined in the room. I asked Ava and she quickly piped up with, "captivity?" The word I was looking for was "isolation." So obviously she is feeling slightly caged up but we count it a blessing to be held captive in such a comfortable prison.

How is Gwen?
Gwen is having no problems adjusting to life back home. She has truly grow in maturity this past season. She has had to shoulder some deep and heavy burdens at such a young age. She's begun to lose her baby fat and is very adamant that things be done her way! The one thing that she struggles with daily is her recurring eczema. It has been particularly bad these past few weeks. She spends a good portion of the day scratching any part of her body that isn't covered up. We are also putting gloves on at night to keep her from scratching. It has been a challenge to keep her skin healthy so your prayers are much appreciated! 

How is Mike?
After a week of getting reacquainted, Mike...

And that is all I had before our life made an unexpected turn with Ava's health again.  It's a reminder that we are not guaranteed another minute of life. Babies grow too fast, parents age in the blink of an eye, and the years, the years they melt away. So I want to honor God with the time I have today. And I want to live in such a way that I would not turn back and see that there were too many wasted moments, too much regret. These are sacred times, right now, precious moments that I'll squeeze every drop of life out of. And I hope you do too.  

Ava on nasal cannula. She was not pleased with this contraption. Not pleased at all...

Ava on Bipap ventilation. Through tears, I kept saying she looked like Bane (from Superman). Stress causes me to make inappropriate jokes. Don't judge.

 Our rooming situation for the past 9 days. Looking back, I don't know how we pulled this off.

 Judy Mcdoodie--maybe time for a new nickname?

Gwennie visiting Ava for the first time in days. You can't tell in the picture but they are having a whispered conversation about IV's and shots while grandma prays over them.

Home at last. Jude is a healthy 16 pounds at 11 weeks! I think he is a stress eater.


Peter said...

You have the most beautiful, precious family - Welcome Back home!!
We'll definitely see you soon!

Anonymous said...

Welcome home!!! Praying for peace and good health