Friday, May 10, 2019

The Origin of While We're Waiting (The Finale)

This post is #200 in a series ... This is the final entry in a series of posts sharing our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire was to process through the events of that period from the perspective that a decade of time has brought ... for myself, really.  But I've been honored and humbled by how many of you have followed these posts over the past 15 months.  I really can't express in words how grateful I am that God has allowed us the privilege of seeing how He has used Hannah's life to touch others.  Thank you for being a part of that.

Read Part One
Read Part Two
Read Part Three
Read Part Four
Read Part Five
Read Part Six
Read Part Seven
Read Part Eight

On the evening we found out that Hannah had a brain tumor, our dear neighbor and retired pastor Brother Gerald Taylor shared Nahum 1:7 with us:  "The Lord is good, a refuge in times of trouble.  He cares for those who trust in Him."  We clung to that verse throughout her year-long battle with cancer, and it now hangs over the door of the While We're Waiting Refuge for Bereaved Parents.


The entire building project was completed in October 2016, a little over two years from the day we starting digging the ditch for the water line.  By God's grace, and with the help of countless volunteers, generous financial donations, and gifts of building materials and supplies, it was completed (and beautifully furnished!) for less than $500,000 -- debt free.

I must share a few pictures so you can see how beautiful it is ...











We had our first retreat at the Refuge in October of 2016, and it was such a blessing to see how each area met the need for which we had designed it.  The meeting area ("Lifesong Room") was comfortable and made our attendees feel at home, the guest rooms were quiet and cozy, the sitting room and deck areas allowed for fellowship and conversation, and the dining room and kitchen were perfect for their purposes.  It was such a confirmation that God's hand was all over this place.

After the completion of the Refuge, we were able to host our retreats much more frequently.  We began to schedule 2-3 events per month, on average.  Even with these added dates, however, we struggled to keep up with the growing demand, and many grieving parents were still waiting a year to get in to an event.  

So God began to raise up people to meet the need.  He brought two couples back into our lives who had each attended retreats when WWW was just beginning, and gave them the desire to step in alongside us and host additional retreats at the Refuge ... allowing us to add more dates at this location without spreading ourselves too thin.  He brought us a couple from Oregon who was willing to begin hosting WWW Weekends in the Pacific Northwest, and we had our first retreat at Ochoco Christian Conference Center in April of 2018.  He recently brought us another couple from Maryland who is willing to begin hosting WWW Weekends on the East Coast, and we will be hosting our first retreat at NorthBay Adventure Camp in August of 2019.  He's brought us some wonderful ladies who have been willing to host Mini-Retreats for Moms in both northeast and northwest Arkansas.  And, He has raised up another couple who has started hosting WWW Weekends with a marriage focus specifically for bereaved parents at our Arkansas and Oregon locations.

We understand that there are bereaved parents who will never come to Arkansas, Oregon, or Maryland to attend a full-weekend or full-day retreat ... but if a 2-hour monthly support group meeting were available in their area, they might be interested in participating in that.  We've been blessed to have people from across the country attend our events and then go back to their hometowns and start support groups in their local areas.  

These support groups differ from other well-known grief support groups in two ways:  1) Attendance is limited just to parents who have lost children; and 2) They are unashamedly faith-based.  Those who attend receive Biblically-based encouragement and enjoy fellowship with other bereaved parents.  They leave each meeting a little better equipped to live well while they're waiting to be reunited with their children one day. 

While We're Waiting "By the Numbers":

* Since our first retreat in April 2011, there have been 99 WWW events around the country, including our full-weekend retreats, our mini-retreats for moms, and our dads' days.

* 660 bereaved parents have attended our events over the past eight years.

* These parents have attended our events from 29 different states and Canada.

* Currently, there are 30 WWW support groups meeting around the country -- in Alabama, Arkansas, California, Florida, Indiana, Kansas, Maryland, Michigan, Missouri, Oklahoma, Oregon, Tennessee, Texas ... and one in Australia.  New groups are being added all the time!

I don't share these numbers to bring attention to the four of us co-founders of WWW ... I share them to give glory to the God who provided the vision, the funding, and the volunteers to make all of this possible.  We just feel blessed to be along for the ride ... and excited about where God is going to take us next!  

And to think this all began when a 16-year-old girl prayed for a storm ...

Thank you for following along over the past fifteen months of posts!  You've been a blessing!


Wednesday, May 8, 2019

The Origin of While We're Waiting (Part 8)

This post is #199 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part One
Read Part Two
Read Part Three
Read Part Four
Read Part Five
Read Part Six
Read Part Seven

For three years, we had wonderful bereaved-parent retreats at Family Farm.  As awareness began to grow about the ministry via word-of-mouth, internet searches, and our Facebook presence, our waiting lists also began to grow.  Even with adding more retreat dates at other locations, we could no longer keep up with the demand for these events.

And as wonderful as Family Farm is, it was not an ideal location for the types of retreats we were hosting.  After all, it was a children's camp ... complete with bunk rooms filled with bunk beds.  Do you remember those plastic-y mattresses at the church camp you went to when you were a kid?  The ones that creak and rustle every time you roll over?  Yeah, that's what we were sleeping on.  And because they were bunk rooms, husbands and wives had to sleep separately.  Definitely not ideal for a grieving parent retreat.  Family Farm is also a very busy place, and was only available to us twice a year.

So we began to consider some other options.  The ultimate solution would be to have our own retreat facility ... a place where we could host as many events as we needed to, where our attendees could enjoy the privacy of their own rooms and feel comfortable and at home from the moment they walked in the door.

Our partners in this ministry, Larry and Janice Brown, owned a house out in the country on the outskirts of town.  They had lived in it for a few years when their kids were in college, but then decided they wanted to move back into town.  They had hung on to the house all those years, but it had fallen into disrepair.  But maybe, just maybe, we could use it somehow.

One evening, the four of us drove out to that property to look it over and consider whether or not it could be transformed into a retreat center.  To be honest, it was really hard to see the potential ...




... but before we left, we prayed in the driveway, turning the entire project over to God and making a commitment to seek His will regarding whether we should move forward.

We had had a website for a few years at this point with a clearly marked "Donate Now" button, and up until that time we had received zero donations ever from this source.  None.  Nada.  Zilch.  When I got home that evening and checked my email, I discovered that during the hour we were walking around this property, we had received two donations through our website for a total of $900!

No one knew what we were doing that evening.  No one knew that we were even considering taking on a building project of this magnitude.  But God knew ... and we took those donations as confirmation that we were moving in the right direction.

A friend of ours got us connected with an architect who donated his time and drew up a plan for our dream retreat center.  The facility would incorporate the existing house, adding a large dining room, a commercial kitchen, and ten private guest rooms, each with its own bathroom.  No more bunk beds with creaky plastic mattresses or shared bathrooms!

This gentleman created a beautiful concept drawing and presented it to us one snowy Sunday afternoon.


It was everything we could have dreamed of!  After we reviewed all the aspects of the drawing with him, we asked him what he thought it would cost to build this amazing building.  He cleared his throat and said, "You'll probably want to sit down."  We dutifully took our seats, and he broke the news:  "A million dollars.  I believe it will cost about a million dollars just to construct the building.  Then you'll have to finish it out and furnish it."

Have I mentioned that we don't charge for our retreats?   Because of this fact, we had a grand total of $3,000 in our WWW bank account at the time, including the $900 that had been donated the night we prayed out at the property.  The thought of coming up with a million dollars was beyond imagination.

The four of us took a ride out to Family Farm a few days later and spent some time visiting with Stan and Donna May (better known by the locals as Daddy and Mama May) who operate Family Farm.  They had been our partners in this ministry from the very beginning and we knew they would have some godly wisdom for us.  We showed them the concept drawing and explained that we were in need of at least $997,000.

We had made a commitment early on in this process that we would not go into debt to build this facility.  We explained to the Mays that we would have to do some very serious fundraising before we could even start ... something the four of us felt extremely ill-equipped to do.  We acknowledged that we would probably be waiting a long time before beginning this project.

I will never forget what Mama May had to say in response to that:  "Oh, no ... You don't wait.  You start!  God will provide what you need."  When she said those words, we knew she was right.  It was time to step out in faith and trust God to provide.

So we did.  In September of 2014, Brad and Larry started digging a water line from the road to the house ... we had enough money for that!  We had agreed that we would just do what we could do until we ran out of funds, and then we'd just stop until God provided some more.


As the months passed, we watched in awe as God provided volunteers, donors, equipment, building materials, and funds.  Not only did we never have to stop, we never even had to slow down!


The slabs were poured for the dining room/kitchen area and the ten guest rooms ... and the first wall was raised on September 13, 2015.  Five days later we had a "Dedication Day" and invited everyone we knew, especially people who had attended one of our WWW retreats at Family Farm, to come out and see the building project and join us in a prayerful time of dedication.  Bereaved parents were invited to write their children's names or favorite Scriptures on the studs.  There were enough people there to completely encircle the guest room slab and as we dedicated the facility to the Lord, we prayed for all the moms and dads who didn't even know at that time that they would ever need a facility like this one.





It was a day I will never forget!

To be continued ...

Monday, April 29, 2019

The Origin of While We're Waiting (Part 7)

This post is #198 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part One
Read Part Two
Read Part Three
Read Part Four
Read Part Five
Read Part Six

That first bereaved-parent retreat in April of 2011 turned out to be above and beyond all we could have ever asked or imagined.  We knew from our experience at the Respite Retreat what God could do when a group of like-minded bereaved parents got together ... but this first While We're Waiting Weekend was such a sweet confirmation of what we believed God was calling us to do.

Buoyed by the success of this first event, we quickly scheduled our next retreat for November of 2011.  And you know what?  That retreat almost didn't "make."  We still didn't have a good way to get the word out, and we had just a few couples interested in coming.  Then at the last minute, some of them dropped out, and we found ourselves facing a decision whether to cancel or proceed with basically just the four of us facilitators and one couple.  We all chuckle about this now, but we gave God a deadline:  If He didn't provide some more attendees within the next 24 hours, we would cancel.  Of course, He came through ... sending us two more couples and a single mom!  And what a wonderful weekend it was!

After that first full-weekend retreat, we began discussing the possibility of hosting some events that were for moms and dads separately, and we decided to move forward with that idea.

In June of 2011, we hosted our very first While We're Waiting Mini-Retreat for Moms at Janice's home.  Our desire was to provide these ladies with a day of pampering in a beautiful, relaxing setting with gourmet food, on-site massages, and most of all, faith-filled fellowship with other moms who understood the experience of losing a child.  This special day was also a wonderful success!





In October of that year, we held our first While We're Waiting Weekend for Bereaved Dads.  This event took place in rural west central Arkansas at my husband's grandmother's home.  Seven men attended and enjoyed spending time outdoors, riding ATVs, grilling steaks, and just hanging out with other dads who understood the experience of losing a child.




By this time, it was clear that God was calling us to continue moving forward in this ministry.  We created a website to help get the word out and to make it easier for people to register for our events.  We started a closed Facebook group just for parents who had lost children as well as a public page on which we could post ministry events.  We even began the mountain of paperwork necessary to become a nonprofit ministry and received our approval letter without complications in a surprisingly short time.

Between these three types of events, we hosted four retreats that first.  In 2012, we hosted seven, and in 2013, we hosted eight.  Word was beginning to spread, people were starting to register, and before we knew it, we had waiting lists a year out into the future.  So in 2014, in addition to the retreats we were already hosting, we traveled to Wichita Falls, Texas, Picayune, Mississippi, Wynne, Arkansas, and Gravette, Arkansas, to host additional events in an attempt to meet the demand.  Every one of these gatherings was so special, the parents we were meeting were so phenomenal, and God's hand was so evident upon this growing ministry, and we knew it was time to take the next step. 

To be continued ...

Monday, April 1, 2019

The Origin of While We're Waiting (Part 6)

This post is #197 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


Read Part One
Read Part Two
Read Part Three
Read Part Four
Read Part Five

Eight years ago this evening, we kicked off our very first While We're Waiting Weekend for Bereaved Parents.  I could try to describe it now, eight years later, but it wouldn't be nearly as effective as pointing you to the blog post I wrote on April 5th, 2011, summarizing the events and sharing pictures of that incredibly special weekend. 

Click HERE to read about our very first While We're Waiting Weekend. 

Friday, March 29, 2019

The Origin of While We're Waiting (Part 5)

This post is #196 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


Read Part One
Read Part Two
Read Part Three
Read Part Four

Over the next few months, we met with Larry and Janice Brown frequently to discuss plans and pray about our upcoming retreat for bereaved parents.  Several times we drove out to Family Farm and included Stan and Donna May in our planning meetings.

I can't stress enough what a step of faith this was on the part of the Browns and the Mays.  Brad and I had been to the Respite Retreat.  We knew what a bereaved parent retreat could look like.  We knew what a beneficial experience it had been for us.  Our partners in this endeavor did not.  They could only trust what we were telling them.  And to be perfectly honest, they had some misgivings, though they did not say so at the time.  Donna May told us later (after the first retreat) that she was worried we would be bringing a "great big ball of pain" to the Farm and she couldn't imagine how this was going to be a good thing.  After all, we and the Browns were still kind of stumbling through grief ourselves at that point!

But you know, the fact that we were so ill-equipped to be tackling a project like this was a vivid illustration of 2 Corinthians 4:7:  "But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us."

Part of the planning process was getting the word out about this retreat.  We talked to a number of bereaved parents who lived locally, I shared the event on my blog, and I posted on my personal Facebook page about it.  I have to chuckle to myself when I think back ... We honestly believed that when we announced this retreat, we would have bereaved parents beating down our doors begging to be allowed to come.  That's not exactly how it worked, and that initially surprised us.  I had to remind myself how hesitant I had been about attending the Respite Retreat.

The weeks passed and our planning meetings and prayer times became more and more frequent.  Finally the day arrived.

We had instructed our guests to plan to arrive between 4:00 and 5:30 pm on that Friday afternoon.  I clearly remember the six of us sitting huddled together around a table in the Family Farm dining room around 3:30.  We were so worried that none of these people were going to show up.

On the other hand, we were even more worried that they were going to show up, because we had no idea what we were doing! 

We truly were just jars of clay.

We spent a large part of that afternoon in prayer, acknowledging our inability to do any of this in our own strength and asking God to be present in every aspect of the weekend.

Four very brave couples did show up that evening ... eight of the most precious people I've ever met.  Including the three couples who were facilitating, there were fourteen of us present at that first retreat.  Seven beautiful children were represented between us.

God did exceedingly abundantly above all we could ask or imagine during that weekend together.

To be continued ...

Thursday, March 21, 2019

The Origin of While We're Waiting (Part 4)

This post is #195 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part 1
Read Part 2
Read Part 3


Brad and I returned home from the Respite Retreat still basking in the glow of the new relationships we'd formed, the things we'd learned from spending time with other bereaved parents, and a renewed hope that it was still possible to have joy in life in spite of our great loss. 

We had a strong sense that God was calling us into a similar type ministry for those who had lost children, but we had no idea how to move forward with it.  We talked about it a lot, and we sought God's direction, but we just didn't have any kind of catalyst to push us forward. 

Then we met Larry and Janice Brown.  Their son Adam, a member of Navy SEAL Team SIX, had been killed in action in Afghanistan just six months previously.  We had attended the same church with them for a number of years but didn't really know them.  Our church is fairly large, and we sit on opposite sides of the sanctuary ... and you know how it is ... you just don't move much outside of your comfort zone in the pews around you when it comes to meeting new people.  Or maybe that's just me.  They're also a little older than we are, so they were in a different Sunday School department and traveled in a different circle of friends.  We just had never really had an occasion to get to know them. 

But after Adam went to Heaven, we had a desire to get to know them.  They were greeters at the back door of our church where we entered every Sunday morning, and one day, we invited them to go out for lunch with us.  They agreed, and we made a plan to meet at a Mexican restaurant after church.

Janice freely admits that she really didn't want to go to lunch with us that day.  She didn't think we would have anything in common.  They had a 36-year-old son who died in war, we had a 17-year-old daughter who died of cancer ... our stories really couldn't be any more different.  But she graciously agreed to go, and I'm so glad she did!

I remember exactly which booth we sat in that day, but I don't remember what we ordered to eat.  We were so busy talking, I'm not sure we even ate what we ordered!  Janice's concern that we would have nothing to talk about quickly dissolved as we discovered the common bond that every bereaved parent shares.  Three hours flew by as we sat in that cramped little booth. 

At some point that afternoon we shared with the Browns about the retreat we had recently attended and what an encouragement it had been to us.  We told them how we felt that God was leading us to start a ministry like this in our area, adding that we just weren't quite sure how to get started.

And these dear folks, who we were meeting for the very first time, said, "Let's do it." 

We were a little taken aback at first.  Really?  Let's do it?  Are you serious?

They were.

So we started seriously discussing the idea.  The first hurdle was determining a location where we could possibly host these retreats.  We brainstormed a bit and thought of a Christian day camp in our area called Family Farm.  We knew that the wonderful couple who run it had lost a son many years previously and we thought they might be open to hosting us.  We decided that spring would be a great time of year to have our first retreat.  We even tossed around some ideas for a name for this fledgling ministry.

We left the restaurant that day with a plan to contact the folks who run Family Farm and see if they would be willing to host a retreat for bereaved parents in the spring.  Brad gave them a call that evening, and they didn't hesitate for a moment.  Our first While We're Waiting Weekend for Bereaved Parents was scheduled for April 1-3, 2011.

It literally happened that quickly.  When God said it was time, it was time.

To be continued ...

Wednesday, March 13, 2019

The Origin of While We're Waiting (Part 3)

This post is #194 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part One
Read Part Two

Even though I didn't really want to go, and this thing was waaaay outside my comfort zone, Brad and I signed up for the Respite Retreat scheduled for Labor Day Weekend in September of 2010.

Respite Retreat was an event hosted by David and Nancy Guthrie specifically for parents who had lost children.  At the retreat, we spent hours listening to bereaved parents pour out their hearts both in group meetings and with us privately over meals and during free time.  We did our own share of pouring, as well!  There were twelve couples there from ten different states and Canada, and our stories of loss were, for the most part, very different. But here are some things that, over the course of the weekend, we discovered we had in common:

-- The pain we share is deep, and it is very real. There were parents there whose son lived for only two heartbeats after birth, and parents whose daughter lived to be an adult with a child of her own. There were parents whose child had suffered months or years of illness, and parents whose child's life was gone in one earth-shattering moment. Two couples had lost two children. I still don't know if the conversation I overheard 17 years ago was completely accurate.  I do believe there are things that could be worse than death when it comes to your children, but the pain and grief I heard and felt that weekend was immense. It didn't matter how old our children were or how we lost them ... the pain was deep, and it was real.

-- Most of us who were there had come to terms with God's sovereignty in taking our children to Heaven sooner than we would have liked, but as one dad put it, "We reserve the right to protest." While we all agreed that our faith has gotten us through our experiences, nearly all of us had experienced some real spiritual struggles.

-- All of us had struggled with feeling "different" or "out of place" in the world. Our thoughts are different, our outlook is different, our conversation is different. One mom said, "Everyone around us is talking about kindergarten and we want to talk about calculus!"  I agreed with her.  Who has time for small talk and chit-chat, when there are issues of such great importance to discuss? I think that's one reason we enjoyed visiting with these other parents so much!  We spent all our time talking about issues and experiences we felt so passionately about.

-- All of us had struggled with getting back into "real life" after the death of our children. People usually don't know what to say to us, or if they should say anything at all. And we're no help ... sometimes we want them to talk to us and sometimes we don't! One couple said that they felt like they carried death with them everywhere they went, and it had deeply affected their relationships with others.  Oddly enough, the place we all agreed was the most difficult to go back to was church!  I think part of that is just the emotion inherent in attending a worship service, but I suspect some of it may be that we seem to feel it necessary to keep up a "front" in church so that others will think we are just as perfect inside as we appear to be on the outside.

-- We had all experienced some degree of memory loss or "brain fog" related to our child's death and the time that's passed since then. I had thought it was just me, or the fact that I was getting older, but I realized that was not the case. Maybe it's because our thoughts had become so consumed with "calculus" all the time. I was just glad to know that I wasn't the only one!

-- All of the moms felt like they had aged rapidly since the death of their child. All of us described the experience of looking in the mirror and wondering what had happened to us! And not just in appearance ... it seemed that that extra weight of grief has taken a toll on our bodies as well.

-- This may be surprising, but when one dad described their experience of losing their 3-month-old baby as 100% terrible and 100% wonderful at the same time, we all murmured in agreement. We all agreed that as awful as losing our children has been, so much good has come from our experiences as well and we could be thankful for that.

-- All of us had a strong desire that our children not be forgotten. Every one of us, in different ways, had sought ways to memorialize our children. I had never thought this would be a big deal for us ... we truly believe Hannah's storm was more about God than it ever was about Hannah ... but as time went by, I did find myself wanting to make sure that Hannah's life was not forgotten.

-- Finally, we all agreed that we could never survive these experiences without our faith in God. I often heard people at that retreat wondering aloud how people got through things like this without Him. I had said that many, many times myself. And as difficult emotionally as the retreat was, we all left there uplifted, because we all knew we would be seeing our children again. Best of all, we all left knowing that the time we've spent without them here will be redeemed in Heaven someday ... every minute will be made up for. And that was a cause to rejoice.

This retreat was an incredibly valuable and healing experience for Brad and I.  Before the retreat was even over, we began talking about how wonderful it would be to bring this bereaved parent retreat concept back home to Arkansas.  We felt strongly impressed by God that this was something He may be calling us to do.  We had no idea what the first step might be, but we were prepared to take it.

To be continued ...

Saturday, March 9, 2019

The Origin of While We're Waiting (Part 2)

This post is #193 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

During the final days of Hannah's life, many people dropped by the hospice center and left books, gifts, food, and other items for our family.  These kindnesses were so greatly appreciated.

Most of these gifts were accompanied by a card indicating who had given them.  But one gift, a book called "Holding On To Hope" by Nancy Guthrie, was accompanied by a card signed only with the initials "plc".  When the book was brought to the room that Hannah and I shared, I read the back cover and discovered that it was Nancy's story about losing two babies to a congenital disorder called Zellweger syndrome.  It sounded like an interesting book, but frankly, I couldn't really see how it related to the situation in which we found ourselves.  Here I was with my 17-year-old daughter dying of cancer ... I wasn't sure how this book would be helpful to me.

But after Hannah went to Heaven and I was ready to read something again, this was the book I was drawn to out of all the books we had been given.  I picked it up and started reading it, and it was exactly what I needed to read.  Zellweger syndrome is a terminal condition, just as Hannah's cancer had been a terminal condition.  In her book, Nancy grappled with difficult issues of God's sovereignty in situations of terminal illness ... when you pray for healing, when you believe God can (and sometimes does) heal, yet He does not choose to heal your child.  It confirmed so much of what we had experienced in our year-long journey with Hannah.

At some point, I got on her website to learn more about her and her story.  A link labeled "Respite Retreats" caught my eye.  I clicked on it and discovered that she and her husband host retreats for bereaved parents in Nashville, Tennessee.  I was simultaneously intrigued and unsettled.

I was intrigued because of what I discussed in my last blog post.  Brad and I both craved interaction with other parents who had lost children, and this sounded like the perfect opportunity for that.  On one level, it sounded like a dream come true.

I was unsettled because this type of event was way outside of my comfort zone.  The thought of going somewhere I had never been to talk to people I had never met about the most painful experiences of my life was actually somewhat terrifying. As a classic introvert, that's exactly the type of situation I typically try to avoid.  I don't even go to retreats with women I know from our church!  I've just never seen myself as a "retreat" type of person.

I showed the retreat information to Brad and told him I thought it looked like a really cool thing that would probably be really helpful to us, but hastily added that I didn't want to go.  Brad, as a classic extrovert, would have gone without hesitation, but I just wasn't ready.

I did sign up for Nancy's e-newsletter before I left the website.  A few months later when I received her newsletter and read about the next Respite Retreat scheduled for that upcoming September, I once again brought the idea to Brad.  Though I was still pretty uncomfortable with the whole idea, I was ready.

To be continued ...

Wednesday, March 6, 2019

The Origin of While We're Waiting (Part 1)

This post is #192 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


This series would not be complete without a discussion of the ministry which developed out of Hannah's homegoing.  Over the next several posts, I would like to share how God used Hannah's storm to initiate the While We're Waiting ministry to bereaved parents.  

After Hannah left for Heaven, Brad and I began trying to ease back into "normal" life.  For several months I had been quite isolated ... pretty much only staying home with Hannah or traveling back and forth to Children's Hospital in Little Rock.  So my forays back to church, work, and social activities were shaky at best.  And for Brad, returning to his role as high school principal without seeing Hannah at her locker in the hallway or with her friends at lunch every day was heartrending.

Because, you see, while everyone else around us was the same as they'd always been, we were changed ... changed to the very core ... changed at the cellular level.  Nothing about our lives was the same, nor would it ever be the same again.  We felt so different from everyone around us, and we felt very alone.  Not lonely, mind you, but alone.  There's a difference.

While other people were content to talk about the unseasonably cold weather or the Razorback basketball team or their upcoming summer vacation, we craved conversation about things of eternal significance.  Idle chit-chat had absolutely no appeal to us.  I had a hard time even focusing on what other people were saying much of the time because of the ongoing dialogue taking place in my own mind.

It didn't take us long to realize that the people with whom we were most comfortable were those who had lost children.  We could talk to these people ... really talk.  We didn't have to parse our words; we didn't have to hide our tears; we didn't have to feel guilty about sharing our struggles.  It didn't matter if their child was older or younger than Hannah; it didn't matter if their child's death had a different cause; it didn't matter if had been ten years or ten months ... we developed an immediate bond with these folks. 

The bereaved parents who shared with us out of their own pain in those early days and weeks remain precious to us to this day.

To be continued ...

Saturday, March 2, 2019

"The Dead in Christ Shall Rise"

This post is #191 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


March 2, 2009

There never really was any question where Hannah's body would be buried.  There's a beautiful cemetery in Briggsville, Arkansas, where the Sullivan family farm is located.   Hannah spent many happy days at the farm ... hunting, riding 4-wheelers, and just hanging out with her cousins. Occasionally, we would stop at that cemetery and visit the graves of her great grandparents and other relatives. She always loved to walk around and read all the different headstones. It's a beautiful country cemetery, on a hillside with lots of trees and a gorgeous view. We knew that was the right place.


We chose to have a private family burial service the day after her celebration service.  The cemetery is nearly a two-hour drive from our town, and we didn't want everyone to feel they had to travel all the way there after the funeral.  We also knew that Hannah would not want a solemn caravan of vehicles with their lights on trailing after a hearse.  So we all just hopped in our own vehicles and met the funeral home folks at the cemetery that morning.

Unfortunately, several members of our extended family, including one set of Hannah's grandparents, had been struck down by a stomach bug overnight and were unable to attend.  We all hated that they couldn't be there, but it was too late to reschedule.

We sat under the little funeral tent beside the casket, a bit huddled together for warmth.  The sun was shining, and I was thankful for that ... but it was quite chilly.  It was still so hard to believe that we were the people sitting in those chairs.  How could this be our family?

The service was led by two of Hannah's uncles ... my brother Steve and Brad's brother Mark.  I remember my brother referring to David's words in 2 Samuel 12:23 as he mourned his son, "I will go to him, but he will not return to me," and feeling the pain of that truth deep in my heart.  As we concluded, our sister-in-law's sister Felicia led the group in singing, "It is Well With My Soul."  And despite the pain and sorrow, deep down it was well with my soul.

The cemetery is on a fairly steep hillside, and Hannah's grave is nearly at the top of the hill. In fact, it's a bit of a hike to get up there.  One thing that sticks out in my mind from that day is watching the pallbearers carry her casket up that hill. It bothered me that the casket was not level as they climbed, and I worried that all the things in there ... her stuffed dog, the letters her friends had put in there, the cross necklace that Mrs. Pat had put in there ... were sliding down to her feet. Hannah always liked everything "just so" and I was irrationally bothered by the thought of things shifting around. Such a strange thing to worry about on that day, but grieving minds are not always rational.

To this day, even ten years later, I have a very strained relationship with Hannah's grave. I don't normally like to spend time there. There's something about seeing your child's name in granite that brings you back to cold, hard reality. And although I know beyond the shadow of a doubt that Hannah herself is not there, and that it is just her earthly shell there below the ground, it is extraordinarily difficult for me to be that close to her body and not be able to be with her. Her body was just a vessel ... I know that ... but I loved that vessel. I cared for that physical body, when she was a newborn and unable to do anything for herself, and then again, as the cancer stole her ability to care for herself.

Maybe one day I'll make peace with her grave ... and then again, maybe not.  It's not permanent anyway.  One of these days the dead in Christ shall rise, and we will be caught up together in the clouds to meet the Lord in the air (1 Thessalonians 4:16-17) and that grave will be made obsolete.

Oh, how I look forward to that day!



Friday, March 1, 2019

Celebrating a Life Well Lived

This post is #190 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


March 1, 2009

Hannah's life was celebrated at First Baptist Church in Hot Springs on this date ten years ago.   We had two goals for the service -- to honor Hannah's life and to point people to Jesus.

I remember stepping into the church building feeling so very raw and exposed.  Even though Hannah's death was not a surprise, it was a shock, and I was very much still reeling from effects of that shock.  Walking down that long aisle to be seated in the front row was an incredibly surreal experience. 

The service began with Hannah's youth pastor, Donnie Burrow, singing an original song he wrote for Hannah. It was beautifully done, and so very special. Our pastor, Manley Beasley, then read the obituary and led in a prayer, followed by the Casting Crowns song "Praise You in the Storm", sung by Danny Baxter, our church's worship pastor.

Bethany and Brad each took a turn speaking in tribute to Hannah, followed by the Chris Tomlin song "I Will Rise", sung by our dear friend (and Hannah's ophthalmologist), Tommy Moseley.  I loved that he sang the entire song with a big smile on his face, clearly reveling in the fact that because Jesus had overcome and the grave was overwhelmed, Hannah had won the victory!

Our dear neighbor, and semi-retired pastor, Gerald "Tiny" Taylor, brought a message about the peace of God, and the service closed with a slide show of pictures of Hannah, and another prayer by Brother Manley.  The gospel was shared, and the hundreds of people in attendance heard it clearly, some of them perhaps for the first time.

I was so glad that Brad and Bethany each took the opportunity to speak that day.  Bethany was just fourteen years old, and it took a lot of courage for her to stand up before that huge crowd and speak from her heart, but she did it.  She talked about how she was now an only child and the depth of that loss, but she ended by declaring that we really didn't lose Hannah ... we knew exactly where she was.

Our goals for the service were accomplished, and we were pleased.

When the celebration service concluded, we all went to Hannah's high school cafeteria, where a dinner was served by friends from our Sunday School class.  So many members of our extended family had traveled across the country to be with us for this special day, and it was wonderful to have this opportunity to visit with them.

Hannah's obituary ...

Hannah Joy Sullivan

Hannah Joy Sullivan, age 17, entered Heaven on February
26, 2009, after a year-long battle with brain cancer. She was
born on October 22, 1991, in Fort Smith, Arkansas, to Brad and
Jill Sullivan. She attended Magnet Cove High School, where she
was junior class president and an honor student. She was a
member of Hot Springs Baptist Church, where she was an active
member of the youth group. She battled her cancer with grace
and strength, never complaining, and accepted her “storm” as an
opportunity to be a witness for Christ. We know that now, in
Heaven, she is more alive than ever before. 

Her family would like
to thank the staff of the Arkansas Children’s Hospital
Hematology/Oncology Clinic and the staff of St. Joseph’s Mercy
Clinic on Airport Road in Hot Springs for the wonderful care they
provided to Hannah over the past year.

Hannah is survived by her sister, Bethany; her parents, Brad
and Jill Sullivan; her grandparents, Charles and Nina Sullivan of
Van Buren, Arkansas, and Tom and Betty Persenaire of Mountain
Home, Arkansas; and a host of loving aunts, uncles, cousins, and
friends.

Visitation will be Saturday, February 28, from 6:00 to 8:00
p.m. at Hot Springs Baptist Church; and a celebration of her life
will be held on Sunday, March 1, at 2:00 p.m. at First Baptist
Church of Hot Springs. There will be a private family burial on
Monday, March 2, at Mount Zion Cemetery in Briggsville,
Arkansas.

Arrangements are by Hot Springs Funeral Home.

I'd also like to share a poem which was included in the funeral program that day.  It was written by our school nurse, and it really captures our Hannah ...

Hannah, Beautiful Hannah

Hannah, beautiful Hannah,
with your big, bright smile
We know at first glance
You know who holds tomorrow
and who holds your hand.

The way you carry yourself
and respond to others 
shows us
You know who holds tomorrow 
and who holds your hand.

The way you lift others up
even in your hour of need 
shows us
You know who holds tomorrow
and who holds your hand.

Your reaction to all you have been through
at such a young age 
shows us
You know who holds tomorrow
and who holds your hand.

Your love for the Lord
and your confidence in His promises 
shows us
You know who holds tomorrow
and who holds your hand.

None of us know about tomorrow,
but if we know the Lord 
as our personal Savior as Hannah did
We can all know with confidence
Who holds tomorrow
and who holds our hand.

~Shawn GoodKnight, 2009

Thursday, February 28, 2019

Snow Showers and Sweet Hugs

This post is #189 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


February 28, 2009

As I've been looking back through all the emails passing back and forth between the newspaper, our friends and family, the church staff, etc., that went on in those days immediately following Hannah's homegoing, I'm struck by how "together" I appeared to be.  My communication skills were intact and I was generally coherent, but I remember none of it.

When I think about it now, I realize that I was actually moving in slow motion through a thick, soup-like fog, while other wonderful people were scurrying all around me, getting things done that needed to be done.  There were people bringing us food, people organizing the food, people writing down who was bringing the food, people putting the slideshow and music together, people preparing to sing at the celebration service, people preparing a beautiful display of pictures and mementos, and people making arrangements for the locations of the visitation and celebration service.  I know I never thanked all these people adequately ... I hope they could somehow sense my appreciation for the gifts of service they gave our family.  They loved us well and it lifted such a burden from our shoulders.

Our home church was undergoing a major renovation at the time, rendering the sanctuary unusable for the visitation and funeral.  It was decided (I don't remember who decided) that the visitation would be held in the youth building of our church.  The pastor of another local church was contacted (I don't know by whom) and he graciously agreed to allow us to use their sanctuary for the celebration service.

As we prepared to attend the visitation later that day, we received a call from the funeral home that Hannah's body was ready if we wanted to come by and view it privately as a family.  Honestly, I didn't want to.  I had kissed her cold cheek goodbye at the hospice center and neither Brad nor I felt the need to see her again.  Bethany did, though, so we went to the funeral home.

The funeral home was owned by a good friend of ours.  Her daughter and Bethany had played basketball together for several years.  She had been so kind to us through the process of making the arrangements, and it was such a comfort to me to know that Hannah's body had been gently cared for by someone who knew her and who loved our family.  Bethany went in to see Hannah, accompanied by her friend.  After a few minutes she came out, took us by the hands, and led us in so we could see her too.

As jarring as it is to see your child in a casket, there was a comfort there, too.  Bethany had chosen her outfit the night before from her closet, and it was one of her favorites.  She looked rested and peaceful, and for that I was thankful. 

We decided not to have her body at the visitation that evening.  Since the casket would be closed, there was really no point in transporting it there, only to move it to another location for the funeral.

We arrived about an hour before the visitation was scheduled to start, and the first person I saw when we walked in was my college roommate.  We had been maids of honor in each other's weddings, but had not seen each other in years.  She and her husband had driven all the way from the San Antonio area that day for the visitation, and after we hugged and talked for awhile, they left and drove all the way home.  I was blown away by the extravagant gift of their presence.

It was a good thing we arrived early, because people began to arrive shortly after we did, and they continued to arrive well after the scheduled two-hour visitation time elapsed.  We were buoyed by the love and kind words of friends, family, medical providers, and strangers all evening long.  Someone brought us stools at some point because we'd been standing so long, but we just couldn't stay seated.  The line of people went out the door and around the corner of the building.

It was a bitterly cold evening and while all those people were standing outside waiting to get in, a light snow began to fall, something quite unusual at the end of February in Arkansas!  Several precious people whispered to me that evening that Hannah must have sent the snow from Heaven just for us.  And I had to smile to myself, because unlike most kids, Hannah hated snow.  Oh, she liked it when she was little ... we have great memories of sledding (or trying to sled) on our neighborhood streets in El Dorado, making snow angels, having snowball fights, etc. And she liked getting out of school because of snow.  But as she'd gotten older, she liked snow less and less. She just really didn't like cold weather, especially after she got sick.  So all the snow comments added a bit of private levity to the evening.

By the time we headed home that evening, we were exhausted but warmed by the love of all these precious people who had come to bring us comfort and share remembrances of our precious girl.  Most of them had no idea what to say to us, but that was okay.  Their presence and their sweet hugs communicated all we needed to know.

These were difficult days, but the prayers of God's people were giving us strength for every moment.  We could literally feel them carrying us.  If you were one of those who was praying for us during that time ... Thank you. 

Wednesday, February 27, 2019

From Anger to Peace

This post is #188 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


Before I begin today's post, I want to take a moment and express my gratitude to all of you who have been following my posts as I've re-lived the final year of Hannah's life through writing.  You have encouraged me and blessed me beyond measure with your comments and kind words.  When I embarked on this year of writing, my intention was honestly quite self-serving.  Writing is how I best process my thoughts, and I thought it would be helpful for me personally to think back through the events of that year through the lens of a decade.  I had no idea there would still be so much interest in Hannah's story after ten years, and it's been a bit overwhelming, yet humbly gratifying, to see how God continues to use her life to touch others.  Thank you for encouraging me and allowing me to continue to share. 

February 27, 2009

Most families don't have the opportunity to prepare for their child's death the way we did.  We had known for a year that Hannah's cancer could be fatal, and even though we prayed earnestly for earthly healing, we knew from the beginning that God may choose to heal her in Heaven.  And, of course, we eventually reached the point where we knew her death was a certainty unless He dramatically intervened. 

So in the final days of her life, we frequently discussed what her actual passing might be like.  We'd been assured that it would be peaceful ending when the tumors on her brainstorm caused her to simply cease breathing, and that's how we imagined it.  It would be a beautiful moment as we sang hymns around her bed, maybe even getting a glimpse of a smile on her face as she got her first peek into Heaven. 

As you know from my post yesterday, this was not the case.  Hannah's last hours on this earth were not peaceful or beautiful.  I don't believe that Hannah was conscious of anything for the last several hours of her life and I an convinced that she did not suffer.  In fact, her soul may have already been in Heaven as her body struggled.  But those final moments were excruciatingly difficult for us.

When I went to bed that night, for the first time since Hannah's diagnosis I found myself angry at God.  Really God?  After all she had been through, as faithful as she had been, as much as she had suffered, why did it have to be so ugly at the end?  How could He have let this happen?  If anyone deserved the beautiful homegoing with a cappella hymns and peaceful smiles, surely it was Hannah!

I angrily complained to God into the wee hours of the morning.  Once I'd had my say, He very quietly reminded me: "My Son did not have an peaceful, beautiful death either." 

The moment those words entered my mind, my arguments and complaints were abruptly silenced and I could physically feel His peace wash over me.  In the calm that followed, I was finally able to sleep.

The next morning, the three of us headed to the funeral home to make arrangements.  Choosing a casket just about did me in.  Walking into that hushed, dimly-lit room with caskets displayed like new cars on a showroom floor was one of the most unnatural things I'd ever experienced.  That is a decision no parent should ever have to do for their child.  But it must be done, and we did it, choosing a beautiful but simple oak container for our daughter's body. 

We already knew the casket would remain closed for both the visitation and the funeral.  Hannah had attended a funeral with us not long before she was diagnosed and it concluded with the attendees filing past the open casket and looking down at the dearly departed loved one.  We had barely gotten out of the funeral home when she declared, "I wouldn't ever want people to walk by and look at me like that when I'm dead!"  She was quite adamant about that, and knowing her personality like we did, we knew she meant it.  Knowing this about her, and aware of the fact that she looked nothing like most people remembered her, there was never any question.  The casket would be closed.

My email from ten years ago ...

A visitation has been scheduled for Saturday, February 28, from 6:00-8:00 p.m. at Hot Springs Baptist Church. A celebration service will be held on Sunday, March 1, at 2:00 p.m. at First Baptist Church in Hot Springs. A private family burial will be held on Monday, March 2.

"Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands." 2 Corinthians 5:1

We are so thankful for the seventeen years we had with Hannah here on this earth, and are looking forward to our reunion with her in Heaven. God is good, all the time!

Jill, Brad, and Bethany

Tuesday, February 26, 2019

Safely Home

This post is #187 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


February 26, 2009 

I woke with a start ten years ago today.  I had slept for several hours without interruption, which had not happened in a long time.  It scared me, and I immediately jumped up to check on Hannah.  She had slept all night, and was still sleeping.  She looked different somehow; better, in fact.  She was sleeping in a more naturally relaxed position and her color seemed to be improved.  Brad came into the room about that time (he and Bethany were staying in a room right next door) and he also thought she seemed better.

She seemed so much improved, in fact, that he decided to go for a run that morning.  Neither of us had been outside the walls of the hospice center much since we'd arrived eight days ago, and a little fresh air would definitely do him some good.  I decided I'd better fill out that TEFRA renewal paperwork ... The way things looked this morning, we just might need that insurance coverage in March.

I filled out all sixteen pages of paperwork, wrote the premium check, and prepared it for mailing.  I even carried it down the hallway and put it in the outgoing mail tray on the front desk.  Upon returning to the room, I peeked at Hannah, who was still sleeping peacefully, and began straightening up a little bit.  Brad had returned from his run by this time and was taking a shower.

As I moved around the room, I became aware that the sound of Hannah's breathing had ever so slightly changed.  It was beginning to take on a ragged quality.  I called Brad in and we sat down beside her.  It was apparent that breathing was beginning to require more effort from her.  As her breathing became more and more labored, I sent off this quick email ...


Hannah has taken a big step toward Heaven this morning….we believe she will be there by the day’s end. Thank you for all your prayers which are carrying her Home and keeping us in His peace….

“Then I saw a new Heaven and a new Earth, for the old Heaven and the old Earth had disappeared…I heard a loud shout from the throne, saying, “Look, the home of God is now among His people! He will live with them, and they will be His people. God Himself will be with them. He will remove all of their sorrows, and there will be no more death or sorrow or pain. For the old world and its evils are gone forever.”…No longer will anything be cursed. For the throne of God and of the Lamb will be there, and His servants will worship Him.” Revelation 21:1, 3-4; 22:3.

God is good, all the time!

Jill, Brad, and Bethany



I'm not going to share the details of what happened over the next few hours.  That is a sacred time shared only between Hannah, Bethany, Brad and myself.  I will say only that her oncologist's prediction that her Homegoing would be a peaceful cessation of breathing was not accurate.  The very thing we had dreaded -- what we had worked so hard to prevent with all those platelet infusions -- is what ultimately took her Home.  It was ugly and brutal.

When her life on this earth ended, my first emotion was extreme relief mixed with joy.  I remember Brad and I both raising our hands in a sort of awkward cheer when she took her final breath.  Her suffering was ended at last, and all of Heaven was now spread out before her eyes!  How could we not rejoice on her behalf?  She was safely Home.

At some point, Brad stepped out of the room and alerted the hospice staff that Hannah had gone Home.  The doctor came in and briefly examined her.  I remember having the crazy thought that maybe, just maybe, he was going to tell us that she hadn't really died, but no ... he pronounced her dead as of 2:25 p.m.  Then we were asked to leave the room so they could clean her up and prepare her body for transport.

We left her room and fell into the arms of our extended family members, who were waiting anxiously in the sun room area.  The relieved/rejoicing feeling was seeping away, and reality was beginning to sink in.  That sun room was a tangle of tears and hugs and love and prayers, and we drank it in.


At 2:50 p.m. I sent this email ...

Hannah entered Heaven at 2:25 p.m. and is eternally healed....We are praising God!
We will be returning home this evening...please give us some time to be together as a family...

God is still good, all the time!

Jill, Brad, and Bethany


We were called back to Hannah's room when the hospice staff was finished with her.  I was surprised to see that her body was tightly wrapped like a mummy.  What struck me the most, though, was the look of utter peace on her face.  She looked more like herself than she had in months ... the look of sickness we had become so accustomed to was gone.  There was no tension and no pain reflected in her face.  She was stunningly beautiful ... but she was clearly gone.  Her shell was empty, and that made it easier to walk out the door that day.

We arrived home about an hour later to a hot meal sitting on our kitchen counter.  The three of us were surprisingly hungry.  I remember reaching up into the cabinet and pulling out four plates just like I always had ... and feeling my heart shatter as I sadly put one back.

I don't remember much about that evening.  We were so thankful that people respected our desire to have that time just for the three of us.  I know we sat in Hannah's room for awhile and reminisced.  I also remember that we threw her wig in the trash ... in fact, we buried it at the bottom of the trash can.  It seemed to represent everything that had been so painful about the last year's journey.  We didn't even want to see it!  Hannah hated that wig, and so did we.

As we clung to each other that night, we knew only a few things for sure.  We did not like this, but  God was still good, He would not abandon us in our grief, Hannah was with Him, and we would see her again one day. 

For the time being, that was enough. 

(My original intention was to conclude this year-long series of posts with Hannah's homegoing, but I have so much more to share.  I hope you'll indulge me with a few more posts in the coming days.)

Monday, February 25, 2019

Breathing Peacefully

This post is #186 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.


February 25, 2009

The entire time we were at the hospice center had a distinct air of unreality.  The fact that we had reached the point where we were re-living the anniversaries of the events which had brought us to this place just added to that sense of illusion.  Surely this wasn't happening to our family.  Surely this was all some kind of crazy dream.  Surely Hannah was going to be fine. 

But no ... there we were, in a hospice center with our 17-year-old daughter whose grasp on this life was becoming more tenuous. 

And no matter how surreal the situation was, there were still practical matters which needed to be taken care of.  We were nearing the end of Hannah's TEFRA coverage.  It would expire on February 28th, and if we didn't renew it, we would be without this supplemental insurance program.  The application was 16 pages long and required a premium check of $333.00 for a 3-month extension. 

Should we renew it or not?  The doctors couldn't tell us how long Hannah would be with us ... probably just days at this point, but maybe longer.  Yes, she might live on into the month of March, but maybe not.  I really didn't want to take the time and energy away from Hannah to fill out that pile of paperwork if I didn't have to.  Yet I desperately wanted her to still need it!  We decided to give it another day or two to see how things went. 

Another practical matter to tend to -- Hannah had worn a small diamond ring on the third finger of her left hand for a few years now.  This ring was a special gift from her dad, given to her on her 13th birthday when he took her out on a date and talked with her about boys and purity and her future husband.  She loved that ring and was still wearing it, though her fingers had become so thin I was afraid it would slip off and get lost in the sheets of her hospice bed.  I gently removed it and placed it on the third finger of my right hand, where it remains to this day.  She wouldn't be needing it anymore.

As the day wore on, Hannah's comfort became more of an issue.  She was no longer able to communicate verbally, but pointed with her index finger when she wanted the head of her bed raised or lowered; or at least we thought that's what she was trying to tell us.  Up and down, up and down all afternoon ... nothing seemed to bring her relief.  Finally we identified what was causing her to be so uncomfortable and the doctor came in, performed a simple procedure, and at last she was able to relax.

What a relief to see her slip into a sound sleep that evening after such a restless day!  We were still hearing the echoes of what her oncologist had told us a week previously, that due to the location of the tumors on her brainstem she would simply and peacefully just stop breathing when God called her home.  Because of that, we always seemed to be anxiously watching her breathe ... not knowing when that last breath would come. 

But that night, she breathed deeply and peacefully as she slept and it was a gift to my weary soul.   

My email from ten years ago today ...

Today marks the one year anniversary of Hannah's brain surgery.  It's been very surreal to relive these dates in February in this current situation. She's had another rather restless day, but they have now put her on a morphine pump, so she can have a steady flow of pain relief rather than having to wait for the nurse to come with the injection each time. We are hopeful that this will really make a difference for her.

We want to thank everyone for the many, many emails, calls, cards, gifts, meals, etc. We spend a lot of our time reading our email and snail mail (much of it from people we don't even know!) and we are saving every single one...even though we are unable to respond to most of them due to sheer volume. What a blessing you have been to our family!

God is good all the time!

Brad, Jill, and Bethany