I'm baaaaack!
Yes, it's been a long time since I've posted and yes, I'm wondering if anyone will read this blog. I don't know about you but I'm ready for an amazing year. Of course "amazing" can take many forms and I'm hopeful this year will be the year I meet all my SMART goals.
As I get older, and each year seems to pass faster and faster, I'm beginning to appreciate each and every day I wake up, full of life. I'm focused on making deliberate changes this year with a focus on things that truly matter. For accountability's sake (and because maybe you share some of these same goals).
Goals. That word doesn't send me screaming out into the street like resolutions does. Truth be told, I never thought much about resolutions being good or bad. It doesn't matter what you call them; it only matters if you set achievable goals that you are focused on meeting throughout the year. So, without further ado here are my primary topical areas to improve on in 2019, in no particular order:
THE BIG ONES
1. My Spiritual Health
2. My Physical Health
3. My Marriage
4. Parenting my ever-growing children
5. Writing...or, To Write or Not to Write, that is the question!
And for fun...
THE NOT-SO-BIG ONES (but still valuable enough I want to pursue them)
1. Fulfilling Bucket List Items - Funny, perhaps, but I'm not getting any younger!
2. Getting my boogie on (whatever that means!)
3. Continued learning (this may or may not include pursuing a master's degree)
With goals of any kind, it's important to give yourself some grace. We all fail, and you should never throw in the towel just because you fell short at some point during the year. As with much of life, dust yourself off, get back to it and TRY AGAIN. Don't give up and say, "I'll try again next year." Even if you still end up falling short, you'll gain a level of perseverance that maybe you didn't possess in the past.
I'll be sharing more details about my personal goals and what I hope to achieve this year and welcome you to join the conversation...if there's anyone out there.
Until next time...
Head Full of Mush
A chronicle of my family’s journey through diagnosis of biliary atresia and eventual liver transplant. Now, traversing the life of a transplant family, I talk about parenting four kids, biliary atresia awareness, writing, and whatever else comes to mind.
Sheriff Sarah
Wednesday, January 9, 2019
Wednesday, July 6, 2016
Immersed in Grief
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.
Labels:
cancer,
friendship,
grief,
health,
hope,
pain,
saying goodbye
Thursday, April 23, 2015
Recalling the Beginning of our New Life - April 23, 2009
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
Navigating a Life of Uncertainty
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
Here Comes That Feeling of Utter Helplessness
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
Hitting the Wall
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
Remembering Our Heroes…and Their Pain
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.
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