tag:blogger.com,1999:blog-46206456343185523582024-03-13T06:59:33.617-07:00Head Full of MushA 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.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.comBlogger239125tag:blogger.com,1999:blog-4620645634318552358.post-81923678964603738412019-01-09T18:37:00.002-08:002019-01-09T18:37:55.930-08:00Embracing the Promise of a New YearI'm baaaaack!<br />
<br />
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.<br />
<br />
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).<br />
<br />
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:<br />
<br />
<br />
<br />
THE BIG ONES<br />
<br />
1. My Spiritual Health<br />
<br />
2. My Physical Health<br />
<br />
3. My Marriage<br />
<br />
4. Parenting my ever-growing children<br />
<br />
5. Writing...or, To Write or Not to Write, that is the question!<br />
<br />
<br />
And for fun...<br />
<br />
<br />
THE NOT-SO-BIG ONES (but still valuable enough I want to pursue them)<br />
<br />
1. Fulfilling Bucket List Items - Funny, perhaps, but I'm not getting any younger!<br />
<br />
2. Getting my boogie on (whatever that means!)<br />
<br />
3. Continued learning (this may or may not include pursuing a master's degree)<br />
<br />
<br />
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.<br />
<br />
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.<br />
<br />
Until next time...<br />
<br />
<br />Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1tag:blogger.com,1999:blog-4620645634318552358.post-64148680660226080522016-07-06T13:07:00.000-07:002016-07-06T13:07:02.341-07:00Immersed in Grief<div class="MsoNormal">
Pain. We all experience it. Whether it’s physical or
emotional, pain is a shared part of life for every human being. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
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<br /></div>
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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. <o:p></o:p></div>
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<br /></div>
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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. <o:p></o:p></div>
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<br /></div>
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Cari died at the much-too-young age of 38, a little over a
month before her 39<sup>th</sup> 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. <o:p></o:p></div>
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<br /></div>
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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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
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<br /></div>
<br />
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NOTE: I haven’t yet found the right words to adequately
write a tribute to Cari but I hope to do so very soon. <o:p></o:p></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-21844587359353922422015-04-23T09:37:00.000-07:002015-04-23T09:37:08.391-07:00Recalling the Beginning of our New Life - April 23, 2009<div class="MsoNormal">
Six years. Hard to fathom it’s been that long. Time
apparently flies even when you’re not having fun. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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 3<sup>rd</sup> birthday. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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THANK YOU to the wonderful nurses on the transplant floor
who’ve cared for Sarah, many of who became friends.<o:p></o:p></div>
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<br /></div>
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THANK YOU to the surgical staff for their remarkable abilities
and care.<o:p></o:p></div>
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<br /></div>
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THANK YOU to all the doctors we’ve come in contact with due
to Sarah’s frequent visits. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
THANK YOU to the Transplant team, a spectacular assembly of
transplant coordinators, nurses, doctors and surgeons. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
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To all of you, we are eternally grateful. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Six years with our family still intact. God is gracious to
us, beyond expression.<o:p></o:p></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com2tag:blogger.com,1999:blog-4620645634318552358.post-39281680898472585652015-03-05T13:19:00.002-08:002016-03-04T14:14:15.013-08:00Navigating a Life of Uncertainty<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
But that’s the problem with transplants. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
You never see the inside. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
Navigating this life of uncertainty in which we find ourselves, somewhat
intensified even from the past, is proving to be daunting and heartbreaking. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
In the end, hope is all we really have. <o:p></o:p></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1tag:blogger.com,1999:blog-4620645634318552358.post-21420863246452286422015-02-24T20:28:00.001-08:002015-04-23T10:08:09.101-07:00Here Comes That Feeling of Utter Helplessness<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">Every day I’m grateful
to be alive and share my life with such a wonderful bunch of rascals. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-2fmzCIgSE90/VO1OB2FqTwI/AAAAAAAAAXA/56wprilmMVU/s1600/July%2B4th%2BEverett%2BParade%2B011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-2fmzCIgSE90/VO1OB2FqTwI/AAAAAAAAAXA/56wprilmMVU/s1600/July%2B4th%2BEverett%2BParade%2B011.jpg" height="240" width="320" /></a></div>
<div class="MsoNormal" style="background: white;">
<br />
<span style="font-family: Helvetica, sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-nprfcObU4Tw/VO1O89nVVvI/AAAAAAAAAXM/raWMuYORq3U/s1600/Picture%2B002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-nprfcObU4Tw/VO1O89nVVvI/AAAAAAAAAXM/raWMuYORq3U/s1600/Picture%2B002.jpg" height="320" width="213" /></a></div>
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<span style="font-family: Helvetica, sans-serif;"><br /></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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.
<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">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. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">She could live to be 100
years old and never need another liver transplant. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Helvetica, sans-serif;">She could require
another transplant at 14, or 20, or 40. Would those be as successful as her
first one? <o:p></o:p></span></div>
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<br /></div>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
<u1:p class=""></u1:p>
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<u1:p class=""></u1:p><u1:p class=""></u1:p><br />
<div class="MsoNormal" style="background: white;">
<span style="color: black; font-family: "Helvetica","sans-serif"; mso-fareast-font-family: "Times New Roman";">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. <o:p></o:p></span></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1tag:blogger.com,1999:blog-4620645634318552358.post-38421849467670409392014-11-18T06:30:00.000-08:002014-11-18T06:30:02.848-08:00Hitting the Wall<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
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<br /></div>
<div class="MsoNormal">
Post-traumatic Stress Disorder. PTSD.</div>
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<br /></div>
<div class="MsoNormal">
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. </div>
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<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
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<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Someday the sun will rise and this difficult road will lay
behind you. Maybe we’ll meet each other in that place. Hang on. </div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1tag:blogger.com,1999:blog-4620645634318552358.post-56562092952745216312014-11-11T13:34:00.002-08:002014-11-11T13:34:32.169-08:00Remembering Our Heroes…and Their Pain<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
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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. </div>
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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. </div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-59888609371176618892014-08-24T15:02:00.002-07:002014-09-30T19:41:07.283-07:00Sheriff for a DayThese 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.<br />
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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.<br />
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First, Sarah was one of the stars of the show in the Everett 4th of July parade.</div>
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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).</div>
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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?</div>
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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. </div>
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This is a beautiful life. </div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-67169405312360579902014-06-08T20:44:00.000-07:002014-09-30T19:42:08.041-07:00Sarah's Latest AdventureI know not everyone is a friend of mine on Facebook where I've been posting regularly the past month about Sarah's current hospital stay at Seattle Children's Hospital, so I'm posting an update here for you.<br />
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Sarah's been in the hospital for 29 of the past 33 days. Things began simple enough: her liver numbers were elevated far beyond what they've been since her transplant 5 years ago. This led to our semi-regular visit to Children's for a liver biopsy. No problem, right? And it started that way. Acute rejection and a regimen of prednisone in-house for 4 days and then weaned off it for the next month.<br />
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Alas, some things just can't be that easy.<br />
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It turned out there was much more than just a minor acute rejection. There was an abscess and an infection. This created a lot of issues including a tremendous amount of fluid. Sarah needed a drain inserted in her abdomen and then a second one a few days later. As usual, she was a trooper. I wonder if God grants sick children a special dose of fortitude and perseverance because if it were me, I'd be a sobbing mess with all the poking and prodding the doctors and nurses do to Sarah.<br />
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Surgery became an option late last week when it seemed like the fluid would just not drain enough to clear the infection. The antibiotics were working as much as they could but not 100% due to all the fluid. No one wanted to talk about surgery because of the danger of further infection but it seemed like a very real possibility. Thankfully, the fluid has steadily been clearing out the past few days and Sarah had one drain removed Friday. There's the possibility the second drain may be removed Monday but have to wait and see.<br />
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Our warrior battles on! We're so grateful to God for carrying us through this time as there's been an (obvious) strain on our family with Patty mostly the one at the hospital, the other kids finishing up school and staying with some friends & family, and me home with our dog.<br />
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More lessons learned and to be reflected on following this latest adventure. We're humbled by the love and support we've received and by God's mercy on Sarah's life.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-58971098059288714692013-06-10T19:37:00.000-07:002014-09-30T19:43:00.787-07:00Flashback to...ScoliosisPassing my 46th birthday this year, I've begun to reflect more and more on the past. For some reason, that contemplation took me back to late May 1980 when I was in 7th grade. I was a short kid and off-and-on shy, although really, in a class of only 60, I knew everyone.<br />
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Back in those days, public schools conducted back screenings in an attempt to catch scoliosis as early as possible. While only 2-3% of kids 10 to 15 will be diagnosed with scoliosis, it was a big deal back then. I remember the day of the screening and wondering what the big deal was about one shoulder blade being lower than the other.<br />
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The final days of school came and went and I found myself in the orthopedic surgery department at UC Davis Medical Center in Sacramento. It's there I first met Dr. Dan Benson and his wife, Karen (I will return to them in another post). Dr. Benson was one of the kindest men I ever met and a great physician. But I wasn't crazy about his diagnosis.<br />
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Scoliosis is a curvature of the spine that generally hits girls and boys who have started to grow at a faster clip. Girls are affected 5 to 8 times more frequently than boys, depending on who you listen to, but I was one of the "lucky" guys.<br />
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When my parents and I met Dr. Benson and received the news, I was stunned. That feeling intensified when I learned the prescription was the Milwaukee Back Brace - a hideous monstrosity that would prevent my spine from curving further and hopefully decrease that curve as I grew. (All the online photos I found were of girls in the brace. I will see if I can find an old one of moi which I'll include in a future post.)<br />
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Great news, I was certain, except for the fact I would have to wear it 23 hours per day...and 8th grade, then high school loomed in front of me.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-13688847837843444732013-04-22T21:10:00.001-07:002014-09-30T19:44:30.792-07:00Four Years Later...and "Thank You" Will Still Never Be Enough<br />
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Four years. It seems insignificant when thinking of a life
but this one is special. Four years ago tonight Sarah received her gift of
life. That same night another family lost someone they loved dearly, just as
much as we love Sarah. Our joy at the sight of Sarah growing each day is
mingled with the painful realization another child died. We’ve never met the
donor family personally and we still hope to have that opportunity sometime in
the future. I can’t begin to imagine
what their healing process must have been like or how they are still coping,
still remembering the loss of a young life with so much potential – a life
tragically cut short.</div>
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For us this family will always have a special place in our
hearts. They decided at some point to share the organs of their beloved child
with others, and Sarah was the beneficiary of that child’s liver. The portal
vein Dr. Healey was able to harvest from that liver replaced Sarah’s useless
one. And the liver itself, what a beauty! To date, Sarah has had no major
issues or serious rejections resulting in liver damage. While she’s had her
shares of biopsies, that liver has remained strong and up to the task of
dealing with an active four-year-old.</div>
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Tonight --- and each day --- we will celebrate the 2<sup>nd</sup>
chance Sarah received April 22, 2009. If things had been different and a liver
had not come, our lives would be so very different. I can’t begin to imagine my
life without her silly laugh; or the times watching her dress up as a little
princess and giving us that mischievous smile, as if to say “yes, I really AM
this cute!; or seeing how much she loves her brother and sisters and how much
they love her in return. The thought of a family of five instead of six is
almost too painful to consider. </div>
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So, yes, we are grateful that we’ve had these 1400+
additional days with Sarah, all because someone else shared a precious gift
amidst the pain of their loss.</div>
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“Thank you” will never be enough. </div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-5949128249082532013-03-18T20:04:00.003-07:002013-03-18T20:04:51.520-07:00This Fragile Life<br />
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I was reminded this past week about the fragility of life.
We see this daily in the liver community - babies, children and even teenagers,
battling for their lives when their liver fails or as they await a transplant.
But this reminder hit even closer to home than liver disease. </div>
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A coach from our kids’ school passed away. He was my age or
younger (early 40s). One week there was nothing wrong with him. Three weeks
later after an infection, kidney dialysis and surgery, he was gone….leaving
behind his wife of 17+ years…and his two high school-aged kids. </div>
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And the question you know is coming began popping up all
over the place: why? </div>
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Why is someone so loved, so admired and so important to
those around him taken so young and so suddenly. It’s impossible to provide a
satisfactory answer to that question, especially for those most impacted by his
loss. </div>
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Our lives will go on because it wasn’t our husband, father
or brother that died. But for his family there will be an emptiness that will
be difficult to even explain to others. No graduation celebration with his
children. No more anniversaries with his wife. No more laughs with his friends.
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This is an inconceivable pain to me. I have four children and an incredible wife. I can't begin to imagine leaving them - to never see my children grow up or get married or have their own children; to not be able to share countless priceless moments with my wife as we grow old together. </div>
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For those of us who believe in Jesus, there is great comfort
in the fact this man is now home with the Lord, pain free…forever. We thank God for
that and we praise Him for a life well lived. It's not goodbye, just farewell for now. </div>
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But the emptiness remains. And the bitter reminder that no
matter how much we try to convince ourselves otherwise, this life is temporal. Truly,
no man knows his time. </div>
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Live your life well. Every day counts. Every moment matters.</div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-1356844385255392632013-03-11T09:18:00.000-07:002014-09-30T19:46:22.556-07:00Pediatric Liver Disease Profile #1: Biliary Atresia<span style="font-family: Arial, Helvetica, sans-serif;">Throughout the coming months I'll be writing profiles of different pediatric liver diseases. This world used to be invisible to me before Sarah's diagnosis. I'm grateful to be part of a wonderful community of people who care for each other, advocate for their children and try to bring awareness to their own little parts of the world.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Up first, the disease that affected my family: biliary atresia.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">Biliary atresia is a rare pediatric liver disease that affects infants in about every 10,000-20,000 births. Race can factor into this number, and females are generally affected more than males. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The essence of biliary atresia is the liver's inability to excrete bile (the "garbage"). This is due to bile ducts being too small to be efficient or completely non-existent. Without the ability to rid itself of bile, the liver is poisoned, leading to a hardening of the organ. If not diagnosed within 8-12 weeks of age, serious complications can occur. The disease is already life-threatening to begin with but if diagnosis lags, the danger increases. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Hardening of the liver (as in cirrhosis) can lead to impeded blood flow which causes varices, as the blood must find "alternate" routes through the body to the heart. These varices (essentially, internal varicose veins) first cause the spleen to increase to an abnormal size before before making a new path through the spleen to the esophagus and beyond. In the absence of immediate care, these varices can burst with serious ramifications. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The first step in restoring the liver's ideal function is the Kasai surgery. The Kasai takes a piece of the small intestine and attaches it directly to the liver in order to allow bile drainage. Sometimes this is enough to restore the liver's health and no transplant is necessary. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">If the liver has been too badly damaged to continue for the long term, transplant is the only viable option. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Standard symptoms include jaundice (body and eyes), distended belly, lack of appetite, white stool and lethargy. These may or may not ALL be present but if you have a question, you should request your pediatrician request blood tests. </span>
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<span style="font-family: Arial, Helvetica, sans-serif;">Links for Reference and Education:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://digestive.niddk.nih.gov/ddiseases/pubs/atresia/"><span style="background-color: white; color: #333333;">National Digestive Diseases</span><span style="background-color: white; color: #333333;"> </span></a><span style="background-color: white; color: #333333;"><a href="http://digestive.niddk.nih.gov/ddiseases/pubs/atresia/">Information Clearinghouse</a></span></span><br />
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<a href="http://www.cincinnatichildrens.org/health/b/biliary/"><span style="font-family: Arial, Helvetica, sans-serif;">Cincinnati Children's Hospital</span></a><br />
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<a href="http://www.liverfoundation.org/abouttheliver/info/biliaryatresia/"><span style="font-family: Arial, Helvetica, sans-serif;">American Liver Foundation</span></a><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<a href="http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=list_of_conditions1&CONTENTID=1316&TEMPLATE=/CM/ContentDisplay.cfm"><span style="font-family: Arial, Helvetica, sans-serif;">American Pediatric Surgical Association</span></a><br />
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<a href="http://www.chop.edu/service/biliary-atresia-clinical-care-program/about-biliary-atresia/frequently-asked-questions-about-biliary-atresia.html"><span style="font-family: Arial, Helvetica, sans-serif;">The Children's Hospital of Philadelphia</span></a><br />
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<br />Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-60616388509407989802013-02-21T13:48:00.001-08:002013-02-21T13:48:43.754-08:00Back to school...Finally!As many of you know who've been reading this blog for any length of time, I started college at 40 and stopped just prior to Sarah's birth. Since then, I've considered the thought of returning and finishing my Associates degree but various reasons and excuses prevented me.<br />
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I'm happy (and excited!) to announce that finally --- after 4 1/2 years! --- I've registered for classes again. I only need 5 classes to finish and figure I can be done by the end of fall quarter. I'm pumped to get going again.<br />
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For me, it's really about FINISHING. I'm great at starting a bunch of different things (like the six books I'm reading right now) but I don't finish very well. So, I'm going to put that to rest. I've finished writing a novel and by gum, I can finish college, too.<br />
<br />
Just wanted to share the news. Regularly scheduled programming will return to the blog when I have time...in between writing...and school...and, oh, YOU know the drill!Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com2tag:blogger.com,1999:blog-4620645634318552358.post-58967055396695434382013-01-01T20:04:00.000-08:002013-01-01T20:04:00.324-08:00Looking Back, Looking to the FutureDid I go to sleep and wake up with another year gone? It sure seems like it. The older I get, the faster each year seems to pass. Not sure if it's because I have four small kids or another reason. I've been thinking about 2012 and wondering if time passes faster for those of us who don't stop to smell the roses from time to time. You know the person: they are so busy or have the facade of busyness that they never bother to stop and look at life passing by them. <div>
<br /></div>
<div>
I think this could be my problem. It's not that I have a packed schedule 365 days-a-year. But I don find myself failing to stop and enjoy life. It's more than reading a book to relax, or watching a movie with my kids. I just don't enjoy each and every day as I should, especially not as a follower of Christ should. And definitely not as someone whose experienced the frightening reality of pediatric liver disease firsthand.</div>
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<br /></div>
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I'm not one to make resolutions. I choose to list goals; things I'd like to improve on personally or professionally. I like to make them measurable and actually attainable. To me, setting a goal of losing 30 pounds means nothing without a set plan I KNOW I will work through. But saying I will strive to become a better friend by deliberately pursuing relationships I want to nurture - now that is something concrete.</div>
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<br /></div>
<div>
2012 was not a terrible year by any means and I'm an extremely blessed man and fully know it. But I look forward to 2013 with anticipation and joy, awaiting all the possibilities before me and reveling in God's grace and vision for my life.</div>
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What is your best memory of 2012? What are you looking for most in 2013?</div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-38043544903569725572012-10-22T16:31:00.003-07:002012-10-22T16:31:54.632-07:00When You Aren’t Really Over It<br />
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">You think you’ve gotten over it. Something from the
past that you believed you’d dealt with and put to rest rears its ugly head
again. You really thought if it came up again, you’d be ready. But you never
are. This is how I felt this morning when Patty called with Sarah’s latest
labs, the first in over three months. Results are below:<span style="font-size: small;"><o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="text-indent: 0.5in;"><span style="line-height: 18.18181800842285px;">A</span>ST 117</span><span style="text-indent: 0.5in;"> </span><span style="text-indent: 0.5in;">(was
34)</span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">ALT 347 (was
29)<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">GGT 154 (was
16)<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">ALK Phos 417 (was 264)<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">To those of you liver parents, these
numbers may or may not appear startling. I’m so used to seeing them my eyes
begin to glaze over when I read them. It’s not the numbers that get to me; it’s
the fact Sarah will need another biopsy and that there is a likelihood of a
hospital stay. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Perhaps I’ve become too complacent
(or joyful!) that Sarah’s enjoyed such a “quiet” time in her liver journey.
She’s experienced the longest and healthiest stretch of time in her life,
post-transplant. Maybe that’s what gets me.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I’ve watched other kids struggle
during this same time; some have even flown home to heaven. It’s hard to ever
become fully comfortable in the land of post-transplant life. There’s always
the thought rejection could occur and the body no longer recognizes the liver
as a friendly organism. We just need to put those thoughts aside, though, and
drink in the richness of each day with our children and other loved ones.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">And that’s what I’ve been doing.
It’s hard to even comprehend I still feel so unsettled when it comes to Sarah’s
life. There’s still so much uncertainty and while it’s likely this will be
nothing more than a bump in the road, with life resuming a normal routine, it’s
difficult to maintain such positive thoughts all the time.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I’m okay now and fully realize that
God may be opening up a door for us; that there may be someone, a family, a
member of the staff, at Children’s that needs encouragement that we can
provide. And I’m good with that. No matter how much jumbled our lives may get,
or how often the possibility of rejection lifts its ugly head, I choose to
focus on what is possible through God.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-63498227850721206752012-09-25T18:20:00.005-07:002012-09-25T18:20:53.467-07:00Unsung Heroes: The Siblings<span style="font-family: Times, Times New Roman, serif;">When we think of pediatric liver disease and other life-threatening illnesses, we focus (and naturally so) on the child battling the disease. We pour all our time, energy and care into that one child. But what if we have other children?</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">Many of you who follow the blog who've experienced the journey of liver disease have more than one child. You know better than anyone else what those children feel in the midst of separation. As parents we want what is best for all our children but we're not always able to provide it. Husbands have to work; mothers are likely the ones spending the bulk of the time at the hospital. So what about the other kids, the siblings?</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I treat each of my kids as a special gift from God. They are equally valuable and precious in my eyes. The fact their brother or sister happens to have special needs or require long hospital stays doesn't change that. In fact, the other kids are heroes themselves.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I've found that no matter their age, the level of compassion these kids have on their (mostly) younger siblings is amazing. Just because the sick child seems to be getting more attention doesn't dampen the love their siblings feel. If anything, it increases how much they care. </span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">When Sarah was battling a terrible bout of varices prior to transplant, each interaction between her and our other three kids was beauty to behold. They may experience the pain of distance from their mother and other strains, but they rarely show it up front. They are really so much more adaptable than adults when it comes to this. </span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">This willingness to adapt and to keep loving is what makes them heroes in my book.</span>Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-68681043739898080452012-09-19T13:11:00.002-07:002012-09-19T13:11:22.750-07:00Moving Ahead with Telling Our Story<!--[if gte mso 9]><xml>
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<span class="share-body">This is a big week in my life as a writer. As I’ve
posted here and elsewhere, I’m working on a book for parents of chronically ill
children or those with life-threatening diseases. The book proposal process,
necessary for nonfiction, has been shall we say, an “educational” experience.
It’s made me not only better define my vision for the book but also challenged
me to consider the real need in the market.</span></div>
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<span class="share-body">On Monday, I emailed off my first query to an
agent. I’ll continue querying for the foreseeable future. On the one hand, I’m
happy to have reached this point in my writing career; on the other, it’s still
difficult to send your ideas & stories out, knowing full well you can face rejection
on a massive scale. Writing is not for the faint-hearted. You have to roll with
the punches and that’s what I’ll do. </span></div>
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<span class="share-body">Even if no agent or publisher shows interest in
the story, it will find its way into those people’s hands that need it the
most. To do otherwise would be unfaithful to the call God has clearly given me.
</span></div>
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Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1tag:blogger.com,1999:blog-4620645634318552358.post-72892541601518309552012-09-12T08:00:00.000-07:002012-09-12T08:00:04.081-07:00When Words Aren't EnoughWords. We use them everyday at work, at home and in town. Spoken, written or typed, any method you choose. Words make us laugh and cry. Words bring us to anger and help us grieve. What happens when words aren't enough?<br />
<br />
This past weekend I learned about the death of a young girl. Death is a part of life and it happens every day in many ways. This was a young girl whose life was full of promise and she was the daughter of a high school friend. Every premature death is a tragedy and this one is no different. When we face situations like these, words seem painfully inadequate.<br />
<br />
The past six years I've seen two friends die from breast cancer; a beloved uncle die prematurely (also cancer); my last living grandparent fade as dementia set in; too many kids with liver disease fly to heaven; two people close to my wife's family commit suicide. The list could go on. It's nothing unique. We all experience death in our lives at some point.<br />
<br />
But how do we adequately express grief or comfort in these circumstances? These are the times with physically presence and touch have their greatest impact. Words aren't necessary. A hug from a friend. A shoulder to cry on. Listening to the late night lamentations of a friend for things left unsaid to a deceased spouse. All of these capture the essence of what true relationship can be.<br />
<br />
Words are a fundamental part of our lives but they are, after all, just words.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-53006252787237315312012-09-10T08:00:00.000-07:002012-09-12T18:34:45.529-07:00Four Years...<br />
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<a href="http://3.bp.blogspot.com/-OaKPUuuZT9Q/UFE4ITMBRJI/AAAAAAAAAPg/o2BnAiUqBw4/s1600/Sarah's+Birthday+Dinner+at+Ixtapa+010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://3.bp.blogspot.com/-OaKPUuuZT9Q/UFE4ITMBRJI/AAAAAAAAAPg/o2BnAiUqBw4/s320/Sarah's+Birthday+Dinner+at+Ixtapa+010.jpg" width="320" /></a></div>
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Today Sarah turns four. I’m continually amazed
by the speed with which time passes. How in the world has she gone from the
beautiful little angel battling a terrible disease to a cute & feisty
little girl ready to enter preschool?<o:p></o:p></div>
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Sarah’s been enjoying the longest trouble free
time of her post-transplant journey. At times, it’s hard to believe she even
had a transplant. Or that she battled biliary atresia. And that she could have
died. I’m not trying to be melodramatic. The journey seemed so surreal itself
and now this “quiet” time is beginning to resemble it.<o:p></o:p></div>
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It’s not that I’ve forgotten what happened. I
never will. Writing a book about the experience doesn’t allow me the luxury of
setting those memories aside, either. If anything they can seem fresher than
they were almost four years ago.<o:p></o:p></div>
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We celebrate all our kids birthdays with equal
vigor but there’s still something different about Sarah’s special day. And
there always will be. We’re only blessed with our children for a short
duration. It will end up being a short part, in terms of years, in our lives
and hopefully theirs. <o:p></o:p></div>
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It’s important to me that each celebration be
just that: a celebration of life, joy, love and gratefulness. <o:p></o:p></div>
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Happy Birthday, Sarah!<o:p></o:p></div>
Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-66154209354269545552012-09-02T21:21:00.004-07:002012-09-02T21:21:57.571-07:00Forgiving YourselfForgiving yourself. These words conjure up a variety of thoughts within different people's minds. Today, I want to tackle forgiveness from the point of view of a liver parent. We've watched with sorrow recently as several of our precious liver children have left this world. The grief of a parent is an experience unique to each one. I can't begin to understand everyone's pain because we are all so different.<br />
<br />
What I do know is that guilt is one of the emotions that frequently torments us amidst pain and loss. Did I do enough to save my baby? What did I miss that might have helped in an earlier diagnosis? Why couldn't I buy them more time? How in the world can I live without them?<br />
<br />
These questions and others can really become rhetorical because in truth, there's no way we can honestly answer them. Our anguish and loss causes us to ask them but answers alone are sometimes not enough. Only time, faith and the love we showed our children in their brief time with us can heal our wounds.<br />
<br />
Guilt can be a debilitating thing. For those of us with kids suffering from various pediatric liver diseases, are awaiting transplants, or have received their gift of life but are struggling, the best thing we can do is let go of any guilt.<br />
<br />
Forgiving ourselves for what we see as failing our children is often the first step to healing. We'll never know why our children were taken from us now, this side of heaven. But we can take the necessary step of acquitting ourselves of some tragic failure to save them. Not only will this free us from a self-made prison but it allows us to fully celebrate the beautiful life we were blessed to share for such a short time.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-49700432971601627632012-08-06T19:19:00.001-07:002012-08-06T19:19:08.584-07:00The Hardest Part of Letting GoAs the parent of a child whose liver is not the one she was born with, I spend a lot of time thinking. Thinking about the family that lost their child. Thinking about how different my life would be if no donor liver came. Thinking about the future --- will Sarah need another liver transplant at some point? Will she live a long life? Will I have to face the possibility of losing her, all over again?<br />
<br />
The liver parents in the audience know what I'm talking about. This is our world and it's an inescapable maze of questions, uncertainty, possibilities, ups, downs, rejoicing and mourning. Many days we have only our faith to carry us and while that is a great comfort, we still can find ourselves stumbling like blind men, asking why her? Why now? Why, why, why?<br />
<br />
I learned last night that a dear family friend is losing a lengthy battle with breast cancer. You can read about Jane <a href="http://dorkman.wordpress.com/">here</a>. The strength, determination and perseverance she has shown is nothing short of miraculous. And if you knew Jane, I'm certain you would see Jesus. Throughout her difficult, exhausting fight she's been an incredible blessing to so many people. The impact of her witness may never be known. I know she's inspired me to re-evaluate what IS and ISN'T important in my life.<br />
<br />
As I watch her husband my good friend, Ray, wrestle with the possibility of losing Jane to heaven, I find myself remembering...<br />
<br />
...when I pledged my life to my wife, no matter what might assail us.<br />
<br />
...what it was like when my first child was born and the dreams I had (and still have) for her life.<br />
<br />
...the sadness of people close to me losing loved ones to suicide.<br />
<br />
...not knowing what would happen when my third child experienced a rare health issue where her inner organs actually exited her body for a short time.<br />
<br />
...facing the possibility Sarah might die before she could receive a new liver.<br />
<br />
It's not my intention to bring you down. Far from it. Each of us face different seasons of life and each of those holds something we must be prepared to let go. There is a lot we should be willing to let go of with little fight. But when it comes to loved ones, oh, that's so hard. People are never easy to let go, no matter if we know they're headed to a place with no disease, no sickness, no pain.<br />
<br />
The fact they will be departing this life and leaving our presence is enough to warrant tears and mourning. We strive so hard to cling to the ones we love, knowing our lives will be the ones that are emptier because they are no longer with us. But in letting go, we may find that the blessing we receive from their memory, from knowing them intimately, from loving them - even for a short time - is a priceless gift that will never die.<br />
<br />Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-29305594152989576732012-07-15T17:40:00.001-07:002012-07-15T17:40:16.451-07:00Heart TroubleIt was an interesting week which some of you may have followed on Facebook. I was admitted to the local hospital last Thursday following an ER visit for chest discomfort. There's nothing quite like a hospital stay to throttle your world a bit.<br />
<br />
I wasn't concerned about having suffered an actual heart attack but did want to err on the side of caution to avoid such an episode. This was my first ER visit, for myself, in quite a few years and I must admit I was taken aback by how quickly they ushered me to a room following check-in. I guess my dad was right: mention you're having chest pain and you go to the front of the line!<br />
<br />
Thankfully, following a full battery of labs, EKG's, a stress test and CT scans, the docs confirmed there were NO heart issues. In fact, I was pretty impressed I did so well on the stress test and learned even my cholesterol had dropped.<br />
<br />
I share all of this to say that sometimes we need an abrupt STOP in our lives. This gives us time to ponder where we are and if that's really where we should be, and want to be. I'm not done re-evaluating my life yet - not my a long shot - because frankly that's a lifelong process. I don't think I'm fully recovered from the shock of a hospital stay and the realization there COULD have been heart issues noted. Then, how would I have acted, what would I have thought? It's a little numbing to consider the possibilities but I don't dwell on them.<br />
<br />
To me, God is bigger than anything life can throw at me. Still, to think a serious diagnosis could have been reached is sobering. I think of my four kids and I can't imagine missing one moment of watching them grow. That's enough to give me pause - and to be grateful for the time I do have.Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-20343308846625301692012-07-09T08:00:00.000-07:002012-07-09T08:00:13.168-07:00How Do We Close the Organ Donation Gap?I just read an interesting article by Dr. Andrew S. Klein, a former chairman with UNOS. He reveals the problems our country faces with organ donation. In 2011, there were more than 110,000 people awaiting transplants but only 28,465 transplants completed. How can this be and how do we narrow this enormous gap? (<span style="background-color: white;">You can read his entire article </span><a href="http://www.huffingtonpost.com/andrew-s-klein-md-mba/organ-donation_b_1635825.html?goback=.gde_154079_member_130360033">here</a><span style="background-color: white;">.)</span><br />
<br />
A huge part of the problem is apathy towards transplants remains. The number of people affected by transplants of any kind has certainly increased over time but that fact hasn't penetrated the culture-at-large. While Facebook's initiative to increase organ donor registration is a great start, we need so much more work done on a local level.<br />
<br />
This can include any or all of the following:<br />
<br />
- Letters to the editor of your local papers, print and online<br />
<br />
- Reaching out to local educational institutions, from high schools to universities<br />
<br />
- Contacting local businesses to help with information outreach<br />
<br />
- Booking speaking engagements with local community service organizations<br />
<br />
<br />
Many of you know I'm writing a book about our personal experience with transplant. Part of my hope for this book is that it will touch people who've never thought much about organ donation/transplant. Awareness is certainly key, but action is required to make a dent the statistics noted above.<br />
<br />
<span style="background-color: white;">You could probably come up with your own list or add many items to mine. Feel free to do so and post a comment with your suggestions, or what you're already doing to advocate organ donation.</span><br />
<br />
<br />
<br />Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com0tag:blogger.com,1999:blog-4620645634318552358.post-47687893351610457502012-07-03T10:00:00.000-07:002012-07-03T10:00:03.164-07:00Real Heroes, Part 2: The ParentsThis week's segment of Real Heroes focuses on the people who love those liver kids: their parents. These aren't just your average, everyday parents. These are people who must withstand regular bouts with disappointment; deal daily with many forms of stress; face extended time away from their spouse and/or other children; and who must be their child's advocate at every turn.<div>
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This post in no one seeks to take away from parents who are raising kids without life-threatening diseases. We all know how difficult it is to parent. Period. But I want to celebrate those heroes who don't step out of the fire even when their bodies might be completely consumed by a poor prognosis, countless nights in the hospital and feel the strain on their marriage.</div>
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We've met many liver parents online and in-person. I'm continually struck by their tenacity, their vulnerability and their strength. They're willing to do ANYTHING in the best interest of their child. They're willing to RISK anything to insure their cared for the best way possible. </div>
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Even these heroes need places to vent and meltdown on occasion. A real hero still needs someone to lean on. The strain of liver disease, transplant and the waiting, waiting, waiting would be insufferable if we all sought to do everything on our own. It takes a special person to acknowledge they need help and to seek it. </div>
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The other parents who offer suggestions, share their own journey and walk alongside another families - they are part of this lineage of heroes. It's imperative we embrace each other no matter what road we're walking at the moment - initial diagnosis, awaiting a transplant, or post-transplant. </div>
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Heroes are willing to sacrifice EVERYTHING for the people they love. That describes liver parents to a T. </div>Blazer67http://www.blogger.com/profile/17954340249076836708noreply@blogger.com1