Hello. My name is Jill Sullivan and I'm a Facebook addict.
Well...maybe I'm more of a Facebook stalker. I find myself checking Facebook several times a day. I rarely post anything myself, but I love reading about what everybody else is up to. I guess basically that just means I'm nosy. But you know what, if I didn't keep up with Facebook, I wouldn't have any idea what was going on in the world. I mean, how would I know when my friends' kids have the stomach virus, or what the best Sonic drink is, or who's having a baby (or a grandbaby), or who everybody thinks should go home on Dancing With the Stars? How could I possibly get by in life without knowing these crucial things?
I spent some time this afternoon perusing Hannah's Facebook page. She started her Facebook membership in April of 2007, when she was 15, and a sophomore in high school. I went all the way back to that point and read through all the entries. I've done this before, but it's been a long time. And once again, I was amazed at my own daughter. The majority of her statuses revolve around doing things with her family...celebrating holidays and birthdays, shopping, hunting, and watching the Razorback football on TV. The rest of her statuses are school-related...homework, test grades, Panther sporting events.
After her cancer diagnosis, she posts frequently about her treatments, but almost always in a positive light. Things like, "Hannah Sullivan is doing good. Thanks for the prayers...I can really feel it!"; "Hannah Sullivan is a much stronger person"; "Hannah Sullivan is happy I have no side effects from treatment so far" and "Hannah Sullivan is amazed by people these days". Sometimes you can see the sick child coming through: "Hannah Sullivan is drained"; "Hannah Sullivan thinks the radiation is killing my throat...but my spirits are up. I'm just so tired"; "Hannah Sullivan is enjoying being home after the annoying day of getting another platelet transfusion". Her last post was on November 22, 2008: "Hannah Sullivan is happy because I don't have to be isolated anymore!" After that, she accepted some friend requests and joined some groups, but she never posted again. Her close-up vision was deteriorating rapidly, and it was just too difficult for her to type. Many, many wonderful people posted messages of encouragement on her wall over the months of her illness, and those messages will always be treasured by our family.
Hannah actually set up my Facebook page for me, and I am her "friend", so I can access anything on her page; however, I don't have her password, so I can't change anything. After she went to Heaven, I wanted to update her status, and I tried every password that I had ever known her to use...none of them worked. So her Facebook page has remained just like she left it, except for the messages her sweet friends and family still write on there from time to time. Those messages are so special to me, as well. It's always nice to know that she's being remembered and thought about.
What really amused me today, as I scrolled through her Facebook info, were the groups she joined along the way. Hannah was very politically aware (I can't imagine how that happened, since FOX news is the only channel we watch in our house!) and she was a member of the following groups:
--Stop Hillary Clinton (One Million Strong Against Hillary)
--Stop Barack Obama (One Million Strong and Counting)
--Mitt Romney Will Bring America Back
--Mike Huckabee for President 2012
--The Clinton Presidential Library Looks Like a Trailer House
In the "Likes & Interests" section on her Info page (where most teenagers put things like hanging out with friends, playing sports, cheerleading, etc.) she instead has three people listed: John McCain, Mike Huckabee, and Sarah Palin. I promise you, we did not brainwash this child!
I thought these were some funny groups for her to join:
--I've Been Called Hannah Banana Several Times
--My Name is a Palindrome and I'm Awesome
--Hair Straightening Appreciation Society
--I Will Go Out of My Way to Step on a Leaf that Looks Particularly Crunchy
--Dora the Explorer is Sooooo an Illegal Immigrant
She was a member of two groups that were set up in her honor:
--We Love Hannah Sullivan
--Our Prayer for Hannah Sullivan
There was also a third group, which she never got to join:
--Hannah Sullivan Is My Hero and Inspiration
Her membership in this group made me sad:
--Class of 2010
And her membership in this group made me smile:
--I Will Always Love My Momma
But what makes me smile the biggest is what she has listed under her Bio on her Info page:
"I love Jesus, and I try to live for Him every day!"
Tuesday, September 28, 2010
Saturday, September 25, 2010
Two Years Ago... (continued)
Picking up the story from yesterday....
After a mostly sleepless night, Brad and I got up the next morning, steeling ourselves for what we might hear from Children's Hospital that day. We put on our brave faces for the girls, and woke them up as usual for school. Hannah woke up feeling good that day, and was excited about going to school, because she was going to be ordering her senior ring that day. She had already picked it out from a school ring catalog, and knew exactly what she wanted. So, Brad went to work (as principal at Hannah's high school) and I dropped the girls off at school. I was supposed to go to work that day too, but I just couldn't. I called our school secretary and told her that I wouldn't be in, without any further explanation. Of course, by this time, they were used to me missing work with Hannah, so she didn't question it.
At 8:00, I called our oncology nurse at Children's and asked her if the scan results were in yet. Of course, they weren't. I explained to her how what had started as a simple brain scan had turned into a lengthy brain and spine scan and she was surprised to hear that. She assured me that as soon as she received the results, she would call me. I waited around the house for about an hour, trying to find things that needed doing, but I couldn't focus on anything and was too restless to just sit and wait. Finally, I just got in my car and began driving. I didn't have any destination in mind, I just knew I had to keep moving. I'm not sure what that says about my psychological state at that point!
I drove around aimlessly for quite awhile until finally, the phone rang. The caller ID showed Children's Hospital, so I parked the car and answered it. The nurse told me that the results were in, and I clearly remember the first thing she said..."It's bad." She patiently explained to me (twice) that the scans showed multiple tumors on Hannah's brainstem and all up and down her spine. She then said (twice) that we were to report to Children's the next day, prepared to spend the night, and that we were going to begin a new chemotherapy regimen. I hung up, shaken to the core, but without tears at that point. I don't remember the drive to the school, but I do remember walking into the building and praying that Brad would be in his office so I wouldn't have to wandering the school looking for him. He wasn't. I found him in an upstairs hallway talking to a teacher, and I didn't approach him or speak...I just gestured to him to come. I hurried back to his office, with him following behind me. He shut the door, and I told him the news...and then finally the tears came, for both of us.
I'm not sure how much time passed while we processed this news, but we knew that we needed to tell Hannah. She had made me promise when she went to school that morning that we would get word to her as soon as we got the results of the MRI. So Brad went, got her out of class, and brought her come to his office. She could immediately tell by the stricken look on our faces that the news wasn't good. We told her what the nurse had said, and then spent some time crying together. About that time, we realized that Bethany would be in the cafeteria eating lunch, so Brad asked the counselor to get her and bring her to his office. So she joined us in his office, and we shared the news with her. And the waves of emotion began yet again. At last, we began to pull ourselves together and decided we would just leave school together, head home, and just spend the rest of the day regrouping.
Just as we were about to leave, the school ring salesman walked into Brad's office. The poor man had no idea what he was walking into! As soon as he came in, he started excusing himself and backing out. But, you know what? Hannah wanted to order her ring! That's what she had come to school for that day! And that's what she did. She sat down with him, calmly explaining the style she wanted, the color stone she wanted, how she wanted her name engraved on the side. After they got all the paperwork filled out, she was ready to go home. So we all got in the car and headed out. But as we were driving past the gym, she said that she had heard that the letter jackets were in, and she wanted to stop by and get hers before we left. So we stopped outside of the gym, and Brad ran in and got her jacket for her.
I don't remember much about the rest of that day, but I do remember the sense of irony I felt about Hannah ordering her class ring and getting her letter jacket within minutes of hearing the news that her cancer had returned with a vengeance. At the time, we honestly didn't even know if she'd live long enough to actually receive her class ring she'd just ordered, much less be a part of the Class of 2010, like her jacket said. I do know that that day really shook us. But again, at some point during that terrible day, the four of us sat down together and re-committed Hannah's life into God's hands.
You might notice that it seems like we had to continually stop and make a conscious decisions to trust God with Hannah's life. That's because we did! Even though we had made a commitment to trust God with our situation back on February 20th, when Hannah's first tumor was found, that decision had to be re-visited time and time again as circumstances changed and faith waned. And every time we did that, we would feel renewed peace and even a deep, indescribable joy as we knew He could be trusted to do what was best for Hannah and for our family.
That Heavenly peace continued to carry us through the rest of September...through the appointment with our oncologist the next day, in which he tearfully shared with us that Hannah had less than a 5% chance of survival; through the days of radiation and hair loss; through the chemo infusions; through the countless blood product infusions; and eventually through Hannah's homegoing exactly five months later. And we are so thankful that that peace is still with us today, as we look back at where we were two years ago, where we are today, and where God may choose to take us in the future!
After a mostly sleepless night, Brad and I got up the next morning, steeling ourselves for what we might hear from Children's Hospital that day. We put on our brave faces for the girls, and woke them up as usual for school. Hannah woke up feeling good that day, and was excited about going to school, because she was going to be ordering her senior ring that day. She had already picked it out from a school ring catalog, and knew exactly what she wanted. So, Brad went to work (as principal at Hannah's high school) and I dropped the girls off at school. I was supposed to go to work that day too, but I just couldn't. I called our school secretary and told her that I wouldn't be in, without any further explanation. Of course, by this time, they were used to me missing work with Hannah, so she didn't question it.
At 8:00, I called our oncology nurse at Children's and asked her if the scan results were in yet. Of course, they weren't. I explained to her how what had started as a simple brain scan had turned into a lengthy brain and spine scan and she was surprised to hear that. She assured me that as soon as she received the results, she would call me. I waited around the house for about an hour, trying to find things that needed doing, but I couldn't focus on anything and was too restless to just sit and wait. Finally, I just got in my car and began driving. I didn't have any destination in mind, I just knew I had to keep moving. I'm not sure what that says about my psychological state at that point!
I drove around aimlessly for quite awhile until finally, the phone rang. The caller ID showed Children's Hospital, so I parked the car and answered it. The nurse told me that the results were in, and I clearly remember the first thing she said..."It's bad." She patiently explained to me (twice) that the scans showed multiple tumors on Hannah's brainstem and all up and down her spine. She then said (twice) that we were to report to Children's the next day, prepared to spend the night, and that we were going to begin a new chemotherapy regimen. I hung up, shaken to the core, but without tears at that point. I don't remember the drive to the school, but I do remember walking into the building and praying that Brad would be in his office so I wouldn't have to wandering the school looking for him. He wasn't. I found him in an upstairs hallway talking to a teacher, and I didn't approach him or speak...I just gestured to him to come. I hurried back to his office, with him following behind me. He shut the door, and I told him the news...and then finally the tears came, for both of us.
I'm not sure how much time passed while we processed this news, but we knew that we needed to tell Hannah. She had made me promise when she went to school that morning that we would get word to her as soon as we got the results of the MRI. So Brad went, got her out of class, and brought her come to his office. She could immediately tell by the stricken look on our faces that the news wasn't good. We told her what the nurse had said, and then spent some time crying together. About that time, we realized that Bethany would be in the cafeteria eating lunch, so Brad asked the counselor to get her and bring her to his office. So she joined us in his office, and we shared the news with her. And the waves of emotion began yet again. At last, we began to pull ourselves together and decided we would just leave school together, head home, and just spend the rest of the day regrouping.
Just as we were about to leave, the school ring salesman walked into Brad's office. The poor man had no idea what he was walking into! As soon as he came in, he started excusing himself and backing out. But, you know what? Hannah wanted to order her ring! That's what she had come to school for that day! And that's what she did. She sat down with him, calmly explaining the style she wanted, the color stone she wanted, how she wanted her name engraved on the side. After they got all the paperwork filled out, she was ready to go home. So we all got in the car and headed out. But as we were driving past the gym, she said that she had heard that the letter jackets were in, and she wanted to stop by and get hers before we left. So we stopped outside of the gym, and Brad ran in and got her jacket for her.
I don't remember much about the rest of that day, but I do remember the sense of irony I felt about Hannah ordering her class ring and getting her letter jacket within minutes of hearing the news that her cancer had returned with a vengeance. At the time, we honestly didn't even know if she'd live long enough to actually receive her class ring she'd just ordered, much less be a part of the Class of 2010, like her jacket said. I do know that that day really shook us. But again, at some point during that terrible day, the four of us sat down together and re-committed Hannah's life into God's hands.
You might notice that it seems like we had to continually stop and make a conscious decisions to trust God with Hannah's life. That's because we did! Even though we had made a commitment to trust God with our situation back on February 20th, when Hannah's first tumor was found, that decision had to be re-visited time and time again as circumstances changed and faith waned. And every time we did that, we would feel renewed peace and even a deep, indescribable joy as we knew He could be trusted to do what was best for Hannah and for our family.
That Heavenly peace continued to carry us through the rest of September...through the appointment with our oncologist the next day, in which he tearfully shared with us that Hannah had less than a 5% chance of survival; through the days of radiation and hair loss; through the chemo infusions; through the countless blood product infusions; and eventually through Hannah's homegoing exactly five months later. And we are so thankful that that peace is still with us today, as we look back at where we were two years ago, where we are today, and where God may choose to take us in the future!
Two Years Ago...
September of 2008 started off as a really good month. Hannah had completed her radiation treatments. She had started her junior year of high school and was making straight A's, as she always had. She was into her fourth month of an oral chemotherapy drug that we believed she would be finished taking after a year. She had had three "all-clear" brain scans. I had not yet "googled glioblastoma" (see post from 9-18-10). And, best of all, we were living in the heightened awareness that an experience with cancer can bring...filled with appreciation for every moment we had together as a family, truly realizing for the first time how fragile life can be. We were enjoying our closer relationship with each other and with God.
But, as we turned the calendar to September, I began to detect almost imperceptible signs that something was not quite right with Hannah. I can't even explain what I was seeing...I really don't even know what it was specifically. But I remember crying to Brad one night (actually several nights) that I felt like she was leaving us, bit by tiny bit. Then, as September neared its end, Hannah began to experience waves of nausea. She had experienced queasiness and nausea on and off since prior to diagnosis in February of that year, but this was different. We waited for a few days, thinking it would pass...thinking it was due to the chemo drug she was taking five days out of every month (she was in the middle of those five days when it started). We also thought it could be a stomach virus, because there was a vicious one being passed around in our community at that time. But when it didn't pass, I called our oncology nurse at Arkansas Children's Hospital. She talked to our doctor, and they decided to move up her MRI appointment. Hannah had just had a clean MRI about seven weeks earlier, and she wasn't scheduled for another until September 29th, but five days before that, on September 24th, we found ourselves in the basement at ACH, getting ready for Hannah's turn in the tube.
There were lots of kids getting MRIs that day, and Hannah's turn did not come until 5:00. At ACH, parents are able to sit in the MRI room while their children are being scanned. Because of the strongly magnetized tube, you have to leave your watch, keys, cellphone, etc. in a locker, and then you sit in an uncomfortable plastic lawn chair (you know, the ones you can get a Dollar General for five bucks) near the door. They hand you a set of earplugs and then close that big door. The temperature in the room is freezing because it apparently gets very warm inside the MRI tube during the scan. After the first MRI, I learned to always wear a hoodie, no matter what the temperature was outside. Bethany came with us that night, and no one under 18 is allowed in the MRI room, so she and Brad had to wait outside in the waiting room, while I sat alone in my cheap plastic chair.
There is nothing like seeing your child being prepped for a medical procedure and feeling like a helpless observer. Whether it's a surgery, a scan, a chemo infusion, a radiation treatment, or even routine bloodwork...it's hard to watch. I stood beside Hannah that night and watched as they meticulously got her positioned on the table, strapped her in, put headphones over her ears, and placed a folded washcloth over her eyes (she always asked for that...it helped her keep her eyes shut). Then I sat in my chair by the door as the table slid into the tube and the jackhammer sounds of the MRI began pounding in my head. All I could see now were Hannah's feet. And I wondered...not for the first time...how she could lie in that tube, unmoving, uncomplaining, without apparent fear, knowing that the results of this scan could indicate whether she would live or die. How does anyone do that, much less a 16-year-old girl?
I was thankful that night that we were only scheduled for a brain MRI, which takes about 45 minutes, more or less. Those 45 minutes seemed to take forever, but finally the clacking of the MRI machine stopped. I waited for the team to come into the room, push the button, slide Hannah out of there and set us free, but they didn't come in right away like they usually did. In fact, it was several minutes later before they finally came in, and they told me that they had decided to scan Hannah's spine, too..."just to make sure". They slid her out of the tube, explained to her that it was going to take a little longer, asked her if she needed to go to the bathroom. Of course, she did...she always needed to go to the bathroom when she got MRIs...and while she was in the bathroom, I found Brad in the waiting room and told him what was going on. And we knew...we knew...that this was not good.
After the trip to the restroom, Hannah got back up on the table, I watched them prep her again, and the incessant jackhammer sound started back up. I remember sitting there frozen (and not because of the temperature now), unable to think, unable to read, unable to pray. Just breathing was an effort. An interminable hour and fifteen minutes crawled by, and finally we were done. The team came in, all smiles, and set Hannah free so she could go get dressed. We peppered them with questions while she was gone...Why the sudden spine scan? Why did it take so long? What was going on? Of course, they could tell us nothing. They did tell us that they had talked to her doctor during the scans and that he had decided to have them to scan everything, "just to make sure".
It was about 7:30 p.m. before we started the trip home. We were all nervous, knowing that things had not gone the way we expected them to that day. We managed to convince ourselves that the doctor was just being cautious, and discussed how fortunate we were to have a doctor that was willing to go the extra mile "just to make sure". We spent some time in prayer together as a family that night, again determinedly placing Hannah in God's hands, knowing that we could trust Him with her future. Sleep was evasive that night, though, knowing that we would most likely be getting results the next day. I knew, in my heart of hearts, that the results would not be good.
I think that's enough for this particular post...I know that sometimes a blog post gets too long and it can become almost oppressive to read. More of the story tomorrow...
But, as we turned the calendar to September, I began to detect almost imperceptible signs that something was not quite right with Hannah. I can't even explain what I was seeing...I really don't even know what it was specifically. But I remember crying to Brad one night (actually several nights) that I felt like she was leaving us, bit by tiny bit. Then, as September neared its end, Hannah began to experience waves of nausea. She had experienced queasiness and nausea on and off since prior to diagnosis in February of that year, but this was different. We waited for a few days, thinking it would pass...thinking it was due to the chemo drug she was taking five days out of every month (she was in the middle of those five days when it started). We also thought it could be a stomach virus, because there was a vicious one being passed around in our community at that time. But when it didn't pass, I called our oncology nurse at Arkansas Children's Hospital. She talked to our doctor, and they decided to move up her MRI appointment. Hannah had just had a clean MRI about seven weeks earlier, and she wasn't scheduled for another until September 29th, but five days before that, on September 24th, we found ourselves in the basement at ACH, getting ready for Hannah's turn in the tube.
There were lots of kids getting MRIs that day, and Hannah's turn did not come until 5:00. At ACH, parents are able to sit in the MRI room while their children are being scanned. Because of the strongly magnetized tube, you have to leave your watch, keys, cellphone, etc. in a locker, and then you sit in an uncomfortable plastic lawn chair (you know, the ones you can get a Dollar General for five bucks) near the door. They hand you a set of earplugs and then close that big door. The temperature in the room is freezing because it apparently gets very warm inside the MRI tube during the scan. After the first MRI, I learned to always wear a hoodie, no matter what the temperature was outside. Bethany came with us that night, and no one under 18 is allowed in the MRI room, so she and Brad had to wait outside in the waiting room, while I sat alone in my cheap plastic chair.
There is nothing like seeing your child being prepped for a medical procedure and feeling like a helpless observer. Whether it's a surgery, a scan, a chemo infusion, a radiation treatment, or even routine bloodwork...it's hard to watch. I stood beside Hannah that night and watched as they meticulously got her positioned on the table, strapped her in, put headphones over her ears, and placed a folded washcloth over her eyes (she always asked for that...it helped her keep her eyes shut). Then I sat in my chair by the door as the table slid into the tube and the jackhammer sounds of the MRI began pounding in my head. All I could see now were Hannah's feet. And I wondered...not for the first time...how she could lie in that tube, unmoving, uncomplaining, without apparent fear, knowing that the results of this scan could indicate whether she would live or die. How does anyone do that, much less a 16-year-old girl?
I was thankful that night that we were only scheduled for a brain MRI, which takes about 45 minutes, more or less. Those 45 minutes seemed to take forever, but finally the clacking of the MRI machine stopped. I waited for the team to come into the room, push the button, slide Hannah out of there and set us free, but they didn't come in right away like they usually did. In fact, it was several minutes later before they finally came in, and they told me that they had decided to scan Hannah's spine, too..."just to make sure". They slid her out of the tube, explained to her that it was going to take a little longer, asked her if she needed to go to the bathroom. Of course, she did...she always needed to go to the bathroom when she got MRIs...and while she was in the bathroom, I found Brad in the waiting room and told him what was going on. And we knew...we knew...that this was not good.
After the trip to the restroom, Hannah got back up on the table, I watched them prep her again, and the incessant jackhammer sound started back up. I remember sitting there frozen (and not because of the temperature now), unable to think, unable to read, unable to pray. Just breathing was an effort. An interminable hour and fifteen minutes crawled by, and finally we were done. The team came in, all smiles, and set Hannah free so she could go get dressed. We peppered them with questions while she was gone...Why the sudden spine scan? Why did it take so long? What was going on? Of course, they could tell us nothing. They did tell us that they had talked to her doctor during the scans and that he had decided to have them to scan everything, "just to make sure".
It was about 7:30 p.m. before we started the trip home. We were all nervous, knowing that things had not gone the way we expected them to that day. We managed to convince ourselves that the doctor was just being cautious, and discussed how fortunate we were to have a doctor that was willing to go the extra mile "just to make sure". We spent some time in prayer together as a family that night, again determinedly placing Hannah in God's hands, knowing that we could trust Him with her future. Sleep was evasive that night, though, knowing that we would most likely be getting results the next day. I knew, in my heart of hearts, that the results would not be good.
I think that's enough for this particular post...I know that sometimes a blog post gets too long and it can become almost oppressive to read. More of the story tomorrow...
Tuesday, September 21, 2010
Happy Birthday, Anchor of Hope!
Last night, the Anchor of Hope Cancer Ministry celebrated its first birthday! I can't tell you what a blessing this group has been in the life of our family! God led us to form this ministry in response to the cancer journey we ourselves had experienced with our daughter, Hannah. The stated purpose of this ministry is to "make a difference in the lives of people in our church and community by offering God's hope and love through encouragement, practical support, education, and prayer for cancer patients and their families." Well, guess who's gotten the most encouragement through this group? I believe that Brad and I have!
The people who participate in the Anchor of Hope ministry, either by attending the support group meetings or by working behind the scenes as encouragers (or both!), are some of the most amazing people I've ever known. I feel so privileged to be a part of this group! You would think that a meeting where people just sit around and talk about cancer would be so discouraging, wouldn't you? We've found this group to be just the opposite. We leave uplifted and encouraged every time. To find out more about the Anchor of Hope Cancer Ministry and support group, click here. We would love to have you come and visit us sometime!
We also had a special visitor at our Anchor of Hope support group meeting last night. She was a reporter from Arkansas Baptist News. Brad and I visited with her for about an hour first, and then she stayed for our support group meeting, even celebrating our birthday with us. If you receive the Arkansas Baptist newspaper, watch for the story in the edition that will come out during the first or second week of October. If you don't get the Arkansas Baptist newspaper in the mail, I will post a link to the online edition as soon as it's available.
God has truly blessed the Anchor of Hope Cancer Ministry in its first year...I can't wait to see what He has in store for the future!!
Saturday, September 18, 2010
Googling Glioblastoma
The day we returned to Arkansas Children's Hospital to have the sutures removed after Hannah's brain surgery, we were told that her tumor was a Grade IV Glioblastoma Multiforme. My brain immediately started whirring; mentally spelling out g-l-i-o-b-l-a-s-t-o-m-a, fully intending to google it the second we got home. Then the doctor's voice brought me back to that little treatment room...he was saying, "Now, don't go home and google glioblastoma. You won't like what you read about it...and besides, what you read won't apply to Hannah anyway. Most people who get glioblastomas are older and the prognosis is not good. She's young and healthy, and with treatment, I think she's got a good chance of cure." After hearing what all that treatment would involve, we left there that day, and went to eat at Firehouse Subs in Little Rock...one of Hannah's favorite places.
We ate in kind of a daze, not even tasting our food, discussing what we had just heard. The three of us made several decisions that day, the biggest of which was that we were going to place Hannah in God's hands and fully trust Him in this situation. One small part of that larger commitment was to follow the doctor's advice and not google glioblastoma. I studiously avoided any information about glioblastoma cancer. When Ted Kennedy was diagnosed with glioblastoma about a month later, I put my fingers in my ears and sang, "La la la la la la la" every time they talked about it on the news. Well, not literally, but you know what I mean! I did listen to the Ted Kennedy stuff enough to know that he was on the exact same treatment protocol (surgery, radiation, Temodar) as Hannah was...and I figured, if Ted Kennedy is getting it, it must be the best treatment available. So I felt good about the treatment she was getting.
Over time, it almost became a source of pride for me. I had so much faith that God had everything under control, I didn't need to know anything about glioblastoma. And things were going so well. Hannah had completed her radiation treatments, she'd had several clear MRIs, she was dealing well with the oral chemo drug. Actually, I was kind of afraid that if I did google it, what I saw might shake my faith...so I resolutely continued my glioblastoma google fast.
Then, in September of 2008, seven months after our first meeting with that doctor, we met with him again. This time, he gave us the news that Hannah's cancer had returned, in the form of multiple tumors on her brainstem and spine. With tears in his eyes, he explained that Hannah had less than a five percent chance of survival at this point. After absorbing that devastating news for a few minutes, we left his office and headed home. As we drove home, I decided it was time to google, and shortly after we arrived, I sat down at my computer.
Here's what I read on Wikipedia:
"Glioblastoma Multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans. Despite being the most prevalent form of primary brain tumor, GBM's occur in only 2-3 cases per 100,000 people in Europe and North America.
Glioblastoma has a very poor prognosis, despite treatment consisting of craniotomy with surgical resection (removal) of as much of the tumor as possible, followed by concurrent or sequential chemo therapy, radiation therapy, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS (Central Nervous System) malignancy.
It is very difficult to treat glioblastoma due to several complicating factors:
* The tumor cells are very resistant to conventional therapies
* The brain is susceptible to damage due to conventional therapy.
* Many drugs cannot cross the blood-brain barrier to act on the tumor.
Common symptoms of the disease include seizure, nausea, headache; the single most prevalent symptom is progressive memory loss, personality changes & neurological deficit.
Symptomatic therapy:
Supportive treatment focuses on relieving symptoms and improving the patient's neurological function. The primary supportive agents are anticonvulsants and corticosteroids.
* Historically, around 90% of patients with glioblastoma underwent anticonvulsant treatment, although only about 40% of the patients required this treatment. Recently, it has been recommended that neurosurgeons not administer anticonvulsants until a seizure occurs.
* Corticosteroids, usually dexamethasone given 4 to 10 mg every 4 to six hours, can reduce edema (swelling), diminishing mass effect and lowering intracranial pressure, with a decrease in headache or drowsiness.
Prognosis:
The median survival time from the time of diagnosis without treatment is 3 months, but with treatment survival of 12-24 months is common. Death is usually due to cerebral edema (brain swelling) or increased cranial pressure."
"Well," I thought, "Everybody knows Wikipedia is not a dependable source of information"....so I searched and searched and searched for something else, something positive about glioblastoma multiforme. You know what? There is nothing positive about glioblastoma multiforme! So I searched for treatment options and treatment centers. Almost all of the major cancer treatment centers were using the same protocol our doctor had recommended for recurrence...additional radiation treatments (tomotherapy this time) and an Avastin/Irinotecan combination, along with steroids to keep brain swelling under control. Then I looked at the cure rates for these centers, and I found that there were no cures. Treatment generally extended patient's lives, but no one survived long term.
Eventually I found a site called "Young Adults Surviving Glioblastoma", and I thought, "Finally...Something encouraging!" And it was encouraging, at first. The home page was full of pictures of vibrant, smiling young people in a variety of settings...riding bikes, climbing mountains, or surrounded by friends and family. I read their stories and rejoiced in how well they were all doing. And I thought, "That will be Hannah. We can put her on this website someday." Then I clicked on another page on that same site, and my hopes came crashing down. This page was full of obituaries...for all of those healthy-looking young people I had just been reading about.
When I finally got up from the computer, my world had been completely rocked. For several days, I was shaken to the core. For the first time, I understood that Hannah had been diagnosed with what is basically a terminal cancer. What does a mom do with this kind of information?
Gradually, I came to the realization that nothing had really changed. Sure, I had more knowledge about what we were dealing with, and it wasn't good, but that didn't change the fact that God was in control. It didn't matter what the research showed; it didn't matter what the cure rates were; it didn't matter that there were so many obituaries on that website...Hannah's life was securely in God's hands, and He knew the number of days He had planned for her. And no matter what her future might be, my job as her mom was to trust Him...the One who loved her even more than I did. And when I released her back into His hands, the peace returned. It wasn't easy, and it wasn't a one-time deal. I had to consciously choose to trust Him, often many times a day, with what was happening in our lives. And He was faithful...giving a peace that passed all understanding even in the midst of excruciatingly difficult circumstances. He's pretty awesome like that!
I'm not sure why I felt prompted to share all of this tonight. It's definitely back in the "heavy post" category. But maybe God can use it to help someone who's going through a life-threatening illness with a loved one. It's not easy...in fact, it's very, very hard...but God will be faithful to see you through it. Trust Him.
We ate in kind of a daze, not even tasting our food, discussing what we had just heard. The three of us made several decisions that day, the biggest of which was that we were going to place Hannah in God's hands and fully trust Him in this situation. One small part of that larger commitment was to follow the doctor's advice and not google glioblastoma. I studiously avoided any information about glioblastoma cancer. When Ted Kennedy was diagnosed with glioblastoma about a month later, I put my fingers in my ears and sang, "La la la la la la la" every time they talked about it on the news. Well, not literally, but you know what I mean! I did listen to the Ted Kennedy stuff enough to know that he was on the exact same treatment protocol (surgery, radiation, Temodar) as Hannah was...and I figured, if Ted Kennedy is getting it, it must be the best treatment available. So I felt good about the treatment she was getting.
Over time, it almost became a source of pride for me. I had so much faith that God had everything under control, I didn't need to know anything about glioblastoma. And things were going so well. Hannah had completed her radiation treatments, she'd had several clear MRIs, she was dealing well with the oral chemo drug. Actually, I was kind of afraid that if I did google it, what I saw might shake my faith...so I resolutely continued my glioblastoma google fast.
Then, in September of 2008, seven months after our first meeting with that doctor, we met with him again. This time, he gave us the news that Hannah's cancer had returned, in the form of multiple tumors on her brainstem and spine. With tears in his eyes, he explained that Hannah had less than a five percent chance of survival at this point. After absorbing that devastating news for a few minutes, we left his office and headed home. As we drove home, I decided it was time to google, and shortly after we arrived, I sat down at my computer.
Here's what I read on Wikipedia:
"Glioblastoma Multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans. Despite being the most prevalent form of primary brain tumor, GBM's occur in only 2-3 cases per 100,000 people in Europe and North America.
Glioblastoma has a very poor prognosis, despite treatment consisting of craniotomy with surgical resection (removal) of as much of the tumor as possible, followed by concurrent or sequential chemo therapy, radiation therapy, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS (Central Nervous System) malignancy.
It is very difficult to treat glioblastoma due to several complicating factors:
* The tumor cells are very resistant to conventional therapies
* The brain is susceptible to damage due to conventional therapy.
* Many drugs cannot cross the blood-brain barrier to act on the tumor.
Common symptoms of the disease include seizure, nausea, headache; the single most prevalent symptom is progressive memory loss, personality changes & neurological deficit.
Symptomatic therapy:
Supportive treatment focuses on relieving symptoms and improving the patient's neurological function. The primary supportive agents are anticonvulsants and corticosteroids.
* Historically, around 90% of patients with glioblastoma underwent anticonvulsant treatment, although only about 40% of the patients required this treatment. Recently, it has been recommended that neurosurgeons not administer anticonvulsants until a seizure occurs.
* Corticosteroids, usually dexamethasone given 4 to 10 mg every 4 to six hours, can reduce edema (swelling), diminishing mass effect and lowering intracranial pressure, with a decrease in headache or drowsiness.
Prognosis:
The median survival time from the time of diagnosis without treatment is 3 months, but with treatment survival of 12-24 months is common. Death is usually due to cerebral edema (brain swelling) or increased cranial pressure."
"Well," I thought, "Everybody knows Wikipedia is not a dependable source of information"....so I searched and searched and searched for something else, something positive about glioblastoma multiforme. You know what? There is nothing positive about glioblastoma multiforme! So I searched for treatment options and treatment centers. Almost all of the major cancer treatment centers were using the same protocol our doctor had recommended for recurrence...additional radiation treatments (tomotherapy this time) and an Avastin/Irinotecan combination, along with steroids to keep brain swelling under control. Then I looked at the cure rates for these centers, and I found that there were no cures. Treatment generally extended patient's lives, but no one survived long term.
Eventually I found a site called "Young Adults Surviving Glioblastoma", and I thought, "Finally...Something encouraging!" And it was encouraging, at first. The home page was full of pictures of vibrant, smiling young people in a variety of settings...riding bikes, climbing mountains, or surrounded by friends and family. I read their stories and rejoiced in how well they were all doing. And I thought, "That will be Hannah. We can put her on this website someday." Then I clicked on another page on that same site, and my hopes came crashing down. This page was full of obituaries...for all of those healthy-looking young people I had just been reading about.
When I finally got up from the computer, my world had been completely rocked. For several days, I was shaken to the core. For the first time, I understood that Hannah had been diagnosed with what is basically a terminal cancer. What does a mom do with this kind of information?
Gradually, I came to the realization that nothing had really changed. Sure, I had more knowledge about what we were dealing with, and it wasn't good, but that didn't change the fact that God was in control. It didn't matter what the research showed; it didn't matter what the cure rates were; it didn't matter that there were so many obituaries on that website...Hannah's life was securely in God's hands, and He knew the number of days He had planned for her. And no matter what her future might be, my job as her mom was to trust Him...the One who loved her even more than I did. And when I released her back into His hands, the peace returned. It wasn't easy, and it wasn't a one-time deal. I had to consciously choose to trust Him, often many times a day, with what was happening in our lives. And He was faithful...giving a peace that passed all understanding even in the midst of excruciatingly difficult circumstances. He's pretty awesome like that!
I'm not sure why I felt prompted to share all of this tonight. It's definitely back in the "heavy post" category. But maybe God can use it to help someone who's going through a life-threatening illness with a loved one. It's not easy...in fact, it's very, very hard...but God will be faithful to see you through it. Trust Him.
Tuesday, September 14, 2010
UNCOOL!
Seems like I've been writing a lot of heavy posts lately. Well, here's something to lighten up the mood a little bit! Bethany's youth group at church has been doing a series lately about how it's okay (actually preferable!) to be "uncool" in today's culture. They capped it off last Wednesday night with Nerd Night. Here are some pictures from the evening, starting with our awesome youth leaders...
Doesn't it make you want to be "uncool", too?!
Doesn't it make you want to be "uncool", too?!
Saturday, September 11, 2010
Respite Retreat (continued...)
About seventeen years ago, I was attending one of those infamous Southern Baptist committee meetings at our church in Fort Smith, Arkansas. We were engaging in some informal conversation around the table before the meeting actually began, and the pastor asked one attendee a question. She was an older lady, who had been a member of the church for a long time...the pastor knew her quite well. He said, "As a pastor, there's something I've always wondered...What is the most painful type of loss someone can endure? I know that in your lifetime, you have lost your parents, your husband, some of your brothers and sisters, and a daughter. Which loss was the most difficult for you?" The dear woman replied with shining eyes, "Oh, Pastor...the loss of my daughter was by far the greatest loss I ever experienced. The others were painful, but I still grieve the loss of my daughter every day in my heart." And our pastor answered, "That is exactly what I've heard over and over again in all the years of my ministry...that the loss of a child is the most painful loss there is."
I was about 27 years old at that time, with one young daughter and another on the way, and as I heard her response, I thought to myself, "Wow...I hope I never have to face that!" For some reason, that conversation has stuck with me all these years. And from time to time, it comes to my mind, and I wonder about it. Since I haven't experienced any of those other types of losses, I've wondered if what I heard that day is really true.
Last weekend, we spent hours listening to bereaved parents pour out their hearts, both in group meetings, and with us privately. We did our own share of pouring, as well! As I shared in my previous post, we twelve couples came 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 really think there are things that could be worse than death when it comes to your children...but the pain and grief I heard and felt last 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 have experienced some real spiritual struggles.
--All of us have struggled with feeling "different" or "out of place" like I mentioned a couple of posts back. 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!" 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 so much...we spent all our time talking about issues and experiences we felt so passionately about.
--All of us have 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 mom 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. I don't know...I'm still pondering that one.
--Strange as it may sound, we've all experienced some degree of memory loss or "brain fog" related to our child's death and the time that's past since then. I thought it was just me, or the fact that I'll be turning 45 in a couple of months, but I guess not. Maybe it's because our thoughts are so consumed with "calculus" all the time...I don't know. I'm just glad to know that I'm not 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 seems 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.
--All of us had a strong desire for our children to not be forgotten. Every one of us, in different ways, have 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 goes by, I do find myself wanting to make sure that Hannah's life is not forgotten.
--Finally, we all agreed that we could never survive these experiences without our faith in God. I often heard people at the retreat wondering aloud how people got through things like this without Him. I've said that many, many times myself. And as difficult emotionally as last weekend 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 how amazing is that?
I was about 27 years old at that time, with one young daughter and another on the way, and as I heard her response, I thought to myself, "Wow...I hope I never have to face that!" For some reason, that conversation has stuck with me all these years. And from time to time, it comes to my mind, and I wonder about it. Since I haven't experienced any of those other types of losses, I've wondered if what I heard that day is really true.
Last weekend, we spent hours listening to bereaved parents pour out their hearts, both in group meetings, and with us privately. We did our own share of pouring, as well! As I shared in my previous post, we twelve couples came 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 really think there are things that could be worse than death when it comes to your children...but the pain and grief I heard and felt last 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 have experienced some real spiritual struggles.
--All of us have struggled with feeling "different" or "out of place" like I mentioned a couple of posts back. 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!" 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 so much...we spent all our time talking about issues and experiences we felt so passionately about.
--All of us have 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 mom 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. I don't know...I'm still pondering that one.
--Strange as it may sound, we've all experienced some degree of memory loss or "brain fog" related to our child's death and the time that's past since then. I thought it was just me, or the fact that I'll be turning 45 in a couple of months, but I guess not. Maybe it's because our thoughts are so consumed with "calculus" all the time...I don't know. I'm just glad to know that I'm not 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 seems 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.
--All of us had a strong desire for our children to not be forgotten. Every one of us, in different ways, have 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 goes by, I do find myself wanting to make sure that Hannah's life is not forgotten.
--Finally, we all agreed that we could never survive these experiences without our faith in God. I often heard people at the retreat wondering aloud how people got through things like this without Him. I've said that many, many times myself. And as difficult emotionally as last weekend 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 how amazing is that?
Tuesday, September 7, 2010
Respite Retreat
All I can say is ... Wow! What an amazing Labor Day weekend we had! On Friday morning, we dropped Bethany off at school and headed out to Henrietta, Tennessee, just outside of Nashville. We were excited, but nervous...not really knowing what to expect at a retreat for bereaved parents. We arrived about 4:00, and were immediately struck by the beauty of the Hiding Place lodge and its surroundings. We carried our stuff inside, found our room, and began meeting the people with whom we would be sharing the weekend. There were twelve couples there, including our hosts, David & Nancy Guthrie, and we were from ten different states and Canada. We were of all ages and backgrounds, and by all outward appearances, had nothing in common.
We had dinner together at 5:30, and talked about our hometowns, our jobs, our travel that day, etc., but did not discuss what we all most wanted to talk about...our children in Heaven. We all knew that later that evening, we would each have the opportunity to tell our story. And after dinner, that's what we did. Or at least we started to. The lodge had a large living room area with comfortable couches and chairs, and we sat in a large circle and shared. We actually only got through three stories that evening, and we continued into the next morning. It was both heart-wrenching and heart-warming to sit and listen to each couple as they shared the most difficult experience(s) of their lives. Our experiences were all very different, yet we were immediately bonded together by our common heartbreak.
After we finished sharing our stories, we spent time discussing various aspects of grief. Topics included how husbands and wives often handle their grief differently, dealing with people who don't understand, issues related to holidays and other special days, cleaning out your child's room, etc. On Saturday night, we had a little comic relief when we played "The Trulywed Game". Brad and I were contestants...we didn't win, but we had fun playing. (And I discovered that he has no idea how many pairs of shoes I own!) Then, on Sunday morning, we had an incredible worship service, in which Nancy reminded us of all the ways that Jesus speaks into our sorrow...
"My soul is overwhelmed with sorrow to the point of death. Stay here and watch with me." Matthew 26:38
"Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life."
John 9:3
"My grace is sufficient for you; for my power is made perfect in weakness."
II Corinthians 12:9
"Don't be afraid!...I hold the keys of death and the grave."
Revelation 1:17-18
"Come to me, all of you who are weary and carry heavy burdens and I will give you rest."
Matthew 11:28
...All much-needed reminders as we walk this road. And after this weekend, I think we're both a little more prepared to keep putting one foot in front of the other until we finally step off this earthly road and onto the Heavenly one.
I plan to share more about the Respite Retreat in a future post, but I need to close for now. I do want to ask you to be praying for Jedidiah Harper and his family as he will be undergoing extensive scans and tests tomorrow. He has completed his chemotherapy treatments and these tests are to ensure that his cancer is gone for good! I know so well what a scary time this is for him and his family, though, and I ask that you will hold them up in your prayers tonight and tomorrow. Thank you!
Thursday, September 2, 2010
Strangers & Aliens
Last night, I went to the first meeting of a new Beth Moore study at our church. There were not too many of us there...maybe about 7 or 8 women. About half were people I knew from our church, and the others were visitors. And I knew it was going to happen...it's inevitable at any "first meeting"...we had to go around the room, introduce ourselves, and tell a little bit about ourselves. Have you ever noticed that when women are asked to tell a little bit about themselves, they always talk about their children? They might mention their husband, they might briefly touch on their job, but they ALWAYS tell about their children.
I never know quite what to do in this situation. Do I just say that I have a 15-year-old daughter named Bethany, and leave it at that? Or do I risk the gasps of shock and murmurs of sympathy and say that I have two daughters...one of them in Heaven? I hate making people uncomfortable or drawing undue attention to myself, but at the same time, it just doesn't feel honest to tell people that I have only have one child.
I didn't have very long to think about it last night. I was the second one in the circle. About half of the group knew my story anyway. So, I took a deep breath (I've learned that it's easier not to cry when I do that) and said my name, that my husband was a high school principal, that I was a speech pathologist, that I had a 15-year-old daughter named Bethany, and that I had a daughter in Heaven. I was so relieved that I managed to get it all out without choking into awkward silence, that I almost forgot to inhale. It actually took me a couple of minutes to get my breath back. The introductions continued around the circle, with all the ladies sharing about their children and families.
With that task accomplished, the leader spoke a few words to introduce the series, which is about the book of Esther, and for the next hour, we sat in semi-darkness watching the video. For awhile, I had some difficulty focusing on what Beth Moore was saying, because as I sat there in there in that room surrounded by all those very friendly women, I suddenly felt like I was a stranger and an alien. I realized for the first time--well, not really for the first time; I've been aware of it before, but this was the first time I've put words to it--that everything, absolutely everything about me is colored by the fact that I'm a mother who has lost a child. Everything I see, hear, say, and think passes through that filter. I can never take that veil off...it is a part of my very being. I suddenly felt so "different" from all of the other women there, and I felt very alone. Not lonely, mind you, but alone. There's a difference.
But here's the cool thing. That was last night. At this time tomorrow night, I will be in another group. And in this group, I will not be alone. I will be surrounded by people who understand me...and I will understand them. Tomorrow morning, Brad and I are leaving bright and early for Nashville, Tennessee, where we will spend the weekend at a Respite Retreat for bereaved parents, hosted by Nancy & David Guthrie. I've posted a lot about Nancy Guthrie in the past. She and her husband have lost two young children, and she's written several wonderful books about their experiences. There will be 10 or 12 couples there, including the Guthries, and we will be spending the weekend together, sharing our stories and growing together in our faith. I think it's going to be an absolutely amazing experience, and we are so looking forward to it!
You know, there's another very good (actually much more accurate) reason I felt like a stranger and an alien in that room last night. It's because I really am one, and so are you, if you are a child of God. This world is not our home...we're just traveling through it on our way to Heaven. I recently read that Heaven shouldn't be called the "afterlife"...instead, this world should be called the "beforelife." I love that!
In Hebrews 11, the author lists Abel and Enoch and Noah and Abraham, and then says this in verses 13-16:
I never know quite what to do in this situation. Do I just say that I have a 15-year-old daughter named Bethany, and leave it at that? Or do I risk the gasps of shock and murmurs of sympathy and say that I have two daughters...one of them in Heaven? I hate making people uncomfortable or drawing undue attention to myself, but at the same time, it just doesn't feel honest to tell people that I have only have one child.
I didn't have very long to think about it last night. I was the second one in the circle. About half of the group knew my story anyway. So, I took a deep breath (I've learned that it's easier not to cry when I do that) and said my name, that my husband was a high school principal, that I was a speech pathologist, that I had a 15-year-old daughter named Bethany, and that I had a daughter in Heaven. I was so relieved that I managed to get it all out without choking into awkward silence, that I almost forgot to inhale. It actually took me a couple of minutes to get my breath back. The introductions continued around the circle, with all the ladies sharing about their children and families.
With that task accomplished, the leader spoke a few words to introduce the series, which is about the book of Esther, and for the next hour, we sat in semi-darkness watching the video. For awhile, I had some difficulty focusing on what Beth Moore was saying, because as I sat there in there in that room surrounded by all those very friendly women, I suddenly felt like I was a stranger and an alien. I realized for the first time--well, not really for the first time; I've been aware of it before, but this was the first time I've put words to it--that everything, absolutely everything about me is colored by the fact that I'm a mother who has lost a child. Everything I see, hear, say, and think passes through that filter. I can never take that veil off...it is a part of my very being. I suddenly felt so "different" from all of the other women there, and I felt very alone. Not lonely, mind you, but alone. There's a difference.
But here's the cool thing. That was last night. At this time tomorrow night, I will be in another group. And in this group, I will not be alone. I will be surrounded by people who understand me...and I will understand them. Tomorrow morning, Brad and I are leaving bright and early for Nashville, Tennessee, where we will spend the weekend at a Respite Retreat for bereaved parents, hosted by Nancy & David Guthrie. I've posted a lot about Nancy Guthrie in the past. She and her husband have lost two young children, and she's written several wonderful books about their experiences. There will be 10 or 12 couples there, including the Guthries, and we will be spending the weekend together, sharing our stories and growing together in our faith. I think it's going to be an absolutely amazing experience, and we are so looking forward to it!
You know, there's another very good (actually much more accurate) reason I felt like a stranger and an alien in that room last night. It's because I really am one, and so are you, if you are a child of God. This world is not our home...we're just traveling through it on our way to Heaven. I recently read that Heaven shouldn't be called the "afterlife"...instead, this world should be called the "beforelife." I love that!
In Hebrews 11, the author lists Abel and Enoch and Noah and Abraham, and then says this in verses 13-16:
"All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country--a heavenly one. Therefore God is not ashamed to be called their God, for He has prepared a city for them."
How cool is that? He has prepared a city for us...where we will finally, truly be "at home." What an incredible day that will be!!