Wednesday, July 6, 2016
Pain. We all experience it. Whether it’s physical or emotional, pain is a shared part of life for every human being.
And so is grief. Many in our liver kid community have experienced the unimaginable grief of losing a child. My heart aches for each and every parent who’s been forced to live that nightmare. Saying goodbye to a child. It should never happen.
Yet even in the midst of that grief so many people reach out with hope. They extend hope to others by how they respond to such tragic circumstances. It’s here we see the vital importance of human relationships, of sharing our pain, our grief and our hope.
Two weeks ago this morning, we lost a precious member of our family, our dear friend, Cari. She wasn’t a relative by blood but she may as well have been. Cari and my wife shared a deep friendship that goes back 20+ years. Cari’s presence at our children’s birthday parties or at special events earned her the coveted spot of favorite Auntie. She was there throughout Sarah’s trials, her liver transplant and beyond.
Cari died at the much-too-young age of 38, a little over a month before her 39th birthday. That alone seems unfair. But as everyone realizes, this world isn’t fair, nor can any of us foresee the time God will call us home from this world.
I had the great honor of being a pallbearer for Cari’s burial last Friday. Holding that casket was one of the most difficult things I’ve ever done. I knew well that Cari’s spirit had long left that shell that was once her body; the body wracked with cancer & pneumonia and filled with weariness from the battle.
Still, to set that casket down seemed to have finality to it. Perhaps that was the moment I truly realized Cari was gone and would no longer call Patty to go see a movie or sit, playing games with our children.
My grief, already great, tugged further at my heart, my mind. Why? The question everyone searches to answer in times like these but for which there is rarely a satisfactory one.
And it wasn’t only my grief for Cari’s loss but the grief I held, too tightly perhaps, for my children who’ll never have the chance to hear Cari’s voice, or feel her love while she watches them during a date night for my wife and I. For them, there certainly IS grief but not to the extent I expected. Maybe kids really are just more resilient than adults. Or maybe they don’t yet realize the depth of that loss.
In the next post, I’ll tackle my emotions moving forward and the hope found in Cari’s faith in God and her Celebration of Life.
NOTE: I haven’t yet found the right words to adequately write a tribute to Cari but I hope to do so very soon.
Thursday, April 23, 2015
Six years. Hard to fathom it’s been that long. Time apparently flies even when you’re not having fun.
Six years ago, my kids were all little tikes. Arianna was not quite 7 and in first grade. Caleb was in preschool and Katarina just celebrated her 3rd birthday.
Six years ago, this very day, April 23, we began a new journey as a family, our new “normal.” Maybe we knew it from the time Sarah was first diagnosed with biliary atresia. We certainly knew it after her bleed that March. Reality can be difficult to accept, especially when your child is involved.
Still, we walked the road that lay before us. We've battled through the times of separation, the times of pain, the times of emotional instability and the times of endless questions.
We stand here now, in one piece, because of God’s grace and mercy. We stand here now because of a collection of people too numerous to name each one. But we wouldn’t be standing here without all of them.
I’ve said this through Facebook and other venues. The words don’t seem adequate but they’re all I have: THANK YOU. We have six years of thankfulness to dispense.
THANK YOU to the wonderful nurses on the transplant floor who’ve cared for Sarah, many of who became friends.
THANK YOU to the surgical staff for their remarkable abilities and care.
THANK YOU to all the doctors we’ve come in contact with due to Sarah’s frequent visits.
THANK YOU to the Transplant team, a spectacular assembly of transplant coordinators, nurses, doctors and surgeons.
THANK YOU to all the friends and strangers (who became friends) for spending quality time with Patty and Sarah, lifting their spirits, making them laugh, bringing gifts and supporting our family over the years.
THANK YOU to all the prayer warriors around the world who never wavered from the time of the original diagnosis through the realization a transplant would be necessary even to now, when even “normal” can fall outside the realm of ordinary. We wouldn’t have survived without you lifting Sarah and our family up in prayer.
To all of you, we are eternally grateful.
Six years with our family still intact. God is gracious to us, beyond expression.
Thursday, March 5, 2015
Living with a pediatric organ transplant recipient can be challenging enough without bumps in the road. Watching for signs of illness, ensuring they get enough rest and that they eat well can seem like a full time job. When the bumps do come (and they always do), it opens a set of potentially troublesome experiences.
In my last post, I detailed my struggles with Sarah’s biopsies and their outcomes. While she returned home last Monday, new issues remain unresolved. The liver docs added a new immunosuppression med to her daily regimen and she continues to slowly wean off prednisone.
Thus far she seems to be handling the new medications fine. To watch her, you’d never think anything was wrong with her. She’s the same funny, joyful, excitable little girl she’s always been.
But that’s the problem with transplants.
You never see the inside.
After further review of Sarah’s biopsy results, it’s been determined donor-specific antibodies (DSA) are affecting her liver’s “happiness” within her body. Additionally, our liver docs confirmed fibrosis, or scarring, is more evident and seems to be ongoing as they review past biopsies.
The good news is that the scarring is at such a slow rate a second liver transplant will not be necessary in the near future. The not-so-good news: it’s highly likely Sarah will require a new transplant sometime between two to ten years. That’s sobering reality for our family.
We always knew this new life – our new “normal” – living with an organ transplant recipient would not resemble what other family’s consider a normal existence. We have to worry about things like pneumonia, EBV, CMV and lymphoma either because of a suppressed immune system or as a side effect of the immunosuppressive meds.
Navigating this life of uncertainty in which we find ourselves, somewhat intensified even from the past, is proving to be daunting and heartbreaking.
Maybe I’ve always suspected Sarah would need another liver sometime in her adult life. I didn’t consider the possibility she’d need one before she reached adulthood.
The sunny side of this is the hope that the new med will prevent future scarring. There are still many unanswered questions regarding the DSA and what else might be happening in Sarah’s body. It’s once-a-week labs for the time being so they can monitor her liver numbers. Those numbers – ALT, AST, GGT and others – will start to paint a picture of where her story may be headed.
So, how do we navigate this life we’re living? Aside from breaking down every so often and crying out to God, we find ourselves falling back into His arms and relying on the prayers and support of those around us, hoping the need for a new liver won’t arise too soon.
In the end, hope is all we really have.
Tuesday, February 24, 2015
Every day I’m grateful to be alive and share my life with such a wonderful bunch of rascals.
Our lives would be very different today without any one of them. It’s something I find difficult to fathom but end up thinking about more than I should. It’s all because of biliary atresia and the resulting liver transplant Sarah received nearly six years ago.
Yet, we’ve been one of the fortunate families. Our baby received a new gift of life. She fought hard to reach that point, but she did. And she’s still with us.
So many families are still grieving the loss of their child weeks, months and years later. What would they have grown up to be? What would they have accomplished? The only answer to those questions is blank pages.
So I understand how truly blessed we are to have our family of six still intact. Our marriage survived the tough times of many nights separated by hospital stays. We survived trying to reconnect as a family after long absences. But its things like today that throw it all up in the air again.
No, Sarah isn’t seriously ill and we’re not looking at an extended hospital stay like that blasted infection from last spring. It’s only a biopsy and yet whenever I hear that word now I consider all the possibilities and not necessarily just the positive outcomes.
I consider the very real possibility of a 4-day hospital stay. I consider, ever momentarily, something happening like last year when the infection wreaked havoc with Sarah’s body for more than 40 days and left our doctors scratching their heads much of the time.
And this is where the feeling of utter helplessness sets in. It sinks it’s claws deep into my tissue, even my bones and lets me know, I’m really not in control of Sarah’s health, her future.
She could live to be 100 years old and never need another liver transplant.
She could require another transplant at 14, or 20, or 40. Would those be as successful as her first one?
As the parent of a liver kid, I honestly grapple with all of these thoughts. In the end, God is the only one that knows Sarah’s future. I’m still learning to live in the here and now because tomorrow is never guaranteed. For any of us. Still, I wish that feeling of utter helplessness would find another place to live. Permanently.
Tuesday, November 18, 2014
I’m certain most of you have heard that phrase sometime in your lives. Often you can’t quite put your finger on what the wall actually is but other times it’s pretty easy to define. You’re burned out at your job. You’re not getting enough sleep. You’ve battled hard for a relationship only to see it crumble and begin to affect every aspect of your life. It could be struggling to move on in the aftermath of the loss of a loved one.
About a week and a half ago, I hit my own wall. I wish I could say it was only one thing but in reality there was a collection of things that created a “perfect storm” scenario. They’d all been building in their own way over time, some of them over the past few years. One of them in particular blew me completely out of the water.
Post-traumatic Stress Disorder. PTSD.
Originally associated with returning military combatants, PTSD can affect anyone who’s lived through a traumatic event or circumstance – such as a child’s liver transplant.
This bout of PTSD blindsided me, although I probably shouldn’t have been surprised by the timing. I’ve continually sought to bury my own pain and deal with life as best I can. But it’s fruitless to believe you can have a “normal” existence when you haven’t dealt with the issues burning your soul. So this is where I live today. It’s not fun, it’s not enjoyable but working through the pain is necessary to regaining a hold on my life. Until I can rid myself of the residual crud, PTSD will rear its ugly head at the most inopportune times.
The good news: I’m alive and I will survive this. My little Sarah battled and fought through biliary atresia, a major bleed and a liver transplant. And everything that goes with it. I can overcome because of her example. So can you, if you’re living through the pain of a child’s illness or anything else but you have to WANT to work for it. There is no overnight fix.
My advice to other liver families and anyone else struggling with PTSD: don’t go it alone. We weren’t made to live alone and we kid ourselves when we think this is “our” problem and we need to fix it. People exist for each other. Let others walk alongside you and aid in your recovery.
Someday the sun will rise and this difficult road will lay behind you. Maybe we’ll meet each other in that place. Hang on.
Tuesday, November 11, 2014
Today is one of the most revered days in our country’s year, Veterans Day. We honor those who have served and defended our nation from enemy forces; who’ve fought in far off lands, on the beaches of Normandy, the dense brush of Vietnam and in the deserts of Iraq and Afghanistan.
I stand with many others today who salute those warriors, those still with us from as far back as WWII, hoping they realize how much their sacrifice means to those of us who’ve been fortunate never to experience war of any kind firsthand. Yes, I’m a Navy veteran but I never served in harm’s way and to me that makes a great difference compared to those who’ve seen friends die before their eyes, lost their sight, arms, legs or use of their body at all.
The trauma of such loss finally found a diagnosis in the form of PTSD. Who knows how many veterans from WWI and WWII lived through their remaining days never realizing what caused their anger, withdrawal or suicidal thoughts. It’s imperative, in light of their service and of PTSD, that we take time as often as possible to let them know we value them, not only as veterans but as people.
Today is one opportunity for us to thank those men and women. But, please, make it more than an annual event. If you see someone with a ball cap signifying them as a veteran or you attend an American Legion or other military function, take time to shake their hand and express your gratitude. You’ll never know the impact of your brief message to them.
Sunday, August 24, 2014
These past few months have been filled with excitement for our little Sarah. We found out some time ago she was going to be this year's Snohomish County "Sheriff for a Day". The state legislature approves the "Chief for a Day" program that allows police jurisdictions to nominate children with chronie or life-threatening medical conditions to participate throughout the state.
We had the great pleasure of making a new friend with one of the deputies and his family, as well as with so many more people in the department.
First, Sarah was one of the stars of the show in the Everett 4th of July parade.
But things didn't end there. Last week was the culmination of her months of waiting. First, she was sworn in as Sheriff (and received a pile of goodies, I might add).
The pinnacle of it all was the opportunity to mingle with other families, law enforcement and even some mascots at the Showare Center and then in Burien. And did I mention she got to ride in a motorcade?
Truly another unforgettable experience for not only Sarah but our entire family. We look back at what brought us to this point - her diagnosis with biliary atresia and subsequent liver transplant - and we have seen God's hand in it all. Her second chance at life. The opportunity to do things we might never have done. The blessing of meeting other families walking similar journeys and the honor of encouraging others.
This is a beautiful life.