Our New Journey

On June 9th, 2011, my husband was feeling ill. He said that he was dehydrated and needed to go to the hospital for fluids. I mentioned to the nurses that I was concerned because he had seemed a little different over the past week. After a few tests, it was revealed that a tumor had taken up residence in his brain. A biopsy soon followed. As the surgeon talked about the results of the biopsy, the dreadful word "cancer" was born into our lives, changing it forever.

Through this blog, I shared the early years of this journey.

Several years later, I'm elated to report that he is doing very well, back to work and life. Seeing him now, you would never know that he has been through such a battle.

Thank you all for your love, support, and prayers.

-Gilly

Friday, March 30, 2018

Good Friday



Today is Good Friday. It has always been a day where I’m reminded of God’s love for me, for us, and for all of humanity. As I was thanking God today for my husband’s health, as I do every day, the idea of God’s love hit me on a much more personal level than it usually does.

“Jesus love me 
This I know
For the Bible tells me so
Little to ones to Him belong
They are weak
But He is strong”

I learned this song as a little child, and as long as I can remember, I’ve known of God’s love for me.  My memories took me back to a day of extreme sorrow several years ago when I learned of God’s love for me beyond the “Bible telling me so.” 

My husband, Joe, had been battling brain cancer for about a year and a half. Throughout the time of dealing with the disease, of dealing with ups and downs, of magnifying the meager blessings just to survive the day, nothing prepared me for this day. 

Joe had not been able to eat for about six months. He had fallen into a cycle of intractable vomiting and hospitalization. Even after stopping chemo, he was getting worse, not better. Because he was unable to retain any nourishment, he had a tube put into his intestines where nurishment could go directly into his system. I was hopeful... until his system went haywire shortly after the procedure.  

Suddenly he was unresponsive. In the brief times that he was awake, he was not Joe. His body seemed to be giving up. The rounding neurologist told me while looking at the latest MRI that the cancer mass was significantly smaller than it had been, but his brain overall did not look healthy. He didn’t think that Joe would ever get better than he was at that moment. The doctor said something to the effect that it looked like the cancer was under control, but he didn’t think that I would ever get my Joe back. At that moment every fiber that had been holding me together discenigrated. It was one thing all these months to wrestle with implications of a terminal disease, but this was something completely different. Now we were looking at years of life in the state he was in- which wasn’t good. 

I went for a walk. I found myself outside, sitting on the ground, head against the rough concrete hospital wall. I cried. I prayed. I cried. And cried more. I don’t know how much time had passed, but eventually I was in the hospital listening to a chaplain. She was very kind, but none of her words brought me comfort. None of the verses from the Bible that she read to me brought hope. 

Then as she was talking I felt the Holy Spirit remind me deep in my soul of God’s love for me. I pushed it away, believing that regardless of His love, nothing could save Joe now and because of that not even the idea of God’s love would bring me comfort. I knew that God loved me and loved my husband more than I could possibly imagine. But it wasn’t enough to bring me any comfort, any relief. 

And then I felt the Holy Spirit again remind me that I’m loved by God. “I know,” I replied inside my head, “but it doesn’t help me right now.” Again, I felt the reminder. I don’t know how many times I felt the simple clear reminder, “God loves you,” before I stopped saying it didn’t help and asked “I know. How does that knowledge help me now? How does it help Joe?” Then the reminder changed a little to say, “God loves. You can know this and trust Me because you know that Jesus died for you and for Joe.” This put weight into the truth of God’s love for me. It was a weight that I could feel deep in my heart. It was like an anchor that brought me stability. I started repeating over and over in my head, “I know that God loves me. Jesus died for me and for Joe.” This didn’t make Joe better. This wasn’t an answer for me as to what I should do next or how I could start to imagine my future and Joe’s future, but the more I repeated that mantra in my head, the less those looming questions mattered. The more I heard myself say this in my head, the deeper my understanding of God’s love grew in my heart and my soul. 

Eventually the nice chaplin left. I thanked her for her compassion and prayers. I continued meditating on God’s love for me and for Joe. The longer I did this, the more comfort I felt and finally my faith grew to trust that although I couldn’t see a solution, and I didn’t know what would happen to Joe and to me, I knew at a deeper level than ever before that God loves me and loves Joe. Because of that understanding of His love, I could trust God and knew that somehow and  sometime both Joe and I would be okay. I could not begin to imagine what that could possibly mean, but that didn’t matter. 

That was both one of the worst and one of the best days of my life. The sorrow and hopelessness I felt was beyond measure, and at the same time so was God’s love. 

On this Good Friday, I think about Jesus carrying our sins to the cross, willingly suffering so that we could know freedom from the bondage of our sins. I think about the cross - meant for punishment and torture. And I think of how God transformed what man meant for suffering and pain into a symbol of hope, acceptance and freedom and the ultimate proof of the Living God’s love for each of us. 

I still sing “Jesus Loves Me” and each time, I’m reminded of that day and I feel the weight of the cross anchoring me to the truth of God’s love. 
        

Thursday, June 12, 2014

I Can't Believe that It's Been Three Years

Wow- My last post was well over two years ago. I've been wanting to return to writing, and this week, it finally happened...

Three years seems so long ago, yet, at the same time, like just yesterday.  This week is the three-year anniversary of my husband, Joe's, diagnosis of brain cancer, and in many ways, I can't believe it's been so long. 

Joe, agreed to accompany me as I made last minute purchases for an end of the school year activity for my classroom. While in the store he suddenly said that he was not feeling well. He thought that he was dehydrated. As the evening progressed and drinking water did not help, we found ourselves in the emergency room. The doctor decided to run a CAT scan, and we found out that he had a brain tumor. That moment didn't seem real and still doesn't. It feels like a lifetime ago.

During the first year and a half we experienced many ups and downs. Much of the time it seemed like the downs were unsurvivable. From the time the biopsy came back as cancer, we watched our world as we knew it melt away. Sometimes it was small pieces at a time, and other times it was like huge chunks of a glacier crashing into the sea floating away, away, away - never to be seen again. So many things that we take for granted as a normal part of our lives became either an intense struggle to accomplish or simply an impossibility for Joe. For months I prayed for a time where he would recover enough that we could enjoy simple things like walks together. 

He did recover. The tumor is still present, but the cancer is a lot less. 

Most importantly, he was blessed with a much better quality of life than cancer initially took.  Many things that he had lost were restored (short-term memory, ability to drive, returning to work, and many more). Not every physical ability has been restored; he still experiences lingering effects both of the disease as well as the chemo. Life for us has reached a much more acceptable normalcy. 

When I think back to those dark months I spent praying for just a little bit more time to spend  with and enjoy my husband, I didn't know how God would answer my prayers. I knew that He heard them. I felt that He was with me and with Joe, but I didn't know what His answer would be. I leaned on God like I never had before, like I didn't know would be possible, and I felt Him holding me, but I didn't know when or how He would answer my desperate cries. I did not know it then, but looking back I feel that He answered me by giving the gift of faith. 

I had never really thought of faith as being a powerful gift until I experienced it. I knew that life for Joe and me would never return to where it had been. I didn't know what God had planned, but He had given me a faith to believe in His love for me and His love for Joe. Because of that faith, I knew that whatever the outcome, we would be okay because we were, are, and always will be in God's hands. 

This past week, women from our church, Riverview, attended an event held every couple of months called Chick Chat. Tuesday's focus was on worship. As we discussed various aspects of worship and sang His praises, it magnified for me the blessings He lavished upon the two of us over the past three years. Though many challenges still exist dealing with this disease, our God has not forgotten us. He is and has been present in our lives, blessing us each day with the unmeasurable gift of each other. The awareness of that blessing is priceless. 

Three years ago our world began melting away. As the pieces are coming back together in a new arrangement, the beauty filling the picture is incredible, and I am incredibly grateful. 

Saturday, February 11, 2012

Love is More Powerful than Cancer

Joe and I just got back from a musical show that I call the "Bob and Steve Show." For the last couple of years the two of them have put together a show twice a year telling a story about love through comedy and music. It's the two of them and they are incredibly entertaining. As I was sitting through tonight's show, I was really reminded of the power of love.

During the show, one of the messages that became really clear to me is the importance of prioritizing one's life to give time needed and deserved to those we love.

It made me think of our journey. Although Joe is battling cancer, our love is more important and stronger than that cancer. It is easy to focus on appointment after appointment. It's easy to make a checklist for the week and follow it. There always seems to be so much that needs to be managed and done.

While all of that is important, I have found that it is even more important to take time to simply enjoy each other. It is easy to get into a routine of going through life especially when there is so much to be done.

The show tonight reminded me how important it is to take time to go for walks and do things together, and most importantly to simply BE together. While cancer has complicated our lives, it does not have the power to take all of our lives. It is so easy to let cancer feel more powerful than it is because it can take away so much physically. Cancer can be a good liar, saying that it is the most important thing. In reality, love is so much more powerful and important. Letting love take over your life, setting that which you love as priority, can set you up for a much more fulfilling life.

Thank you Bob and Steve for a great show and a wonderful reminder.

Thank you all for your prayers.

Joe update: Joe is still doing well. He will have another MRI scheduled this month and an appointment with the neuro-oncologist at the end of the month. We are hoping for continued answer to prayers. We are still trying to figure our problems with his blood pressure. He had high blood pressure before the cancer, and to avoid complications with other medications, had to change blood pressure medications. In addition, one of the treatments that he receives is notorious for raising blood pressure. When he went to get his chemo on Tuesday, his blood pressure was too high. He was able to get the chemo today, but his blood pressure was still a bit high. He has an appointment on Monday with his primary care doctor to help figure out a better solution.

Wednesday, January 18, 2012

This is a really long post. A lot has happened since my last post, and it has taken me a bit of processing time before being able to write. As you will see, there was quite a bit to process.

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It has been awhile since my writing fingers have been ready to continue to log the experiences of our new journey. For a short time, I couldn’t put into words the details because my emotions were too strong. It was like in the beginning when I felt paralyzed… then exhausted… then drained.

Putting to written words both the good news and the bad news is hard. With the bad news, it feels a little like giving up huge pieces of hope and acknowledging defeat. As if writing about the reality makes it happen. A part of me didn’t want to write about bad news because I didn’t want to admit the conclusion the facts were pointing to as truth. I also didn’t want to bring anyone else into the sadness of the situation. I know that through this I’ve been honest in my posts, really honest, but I’ve left a lot out as well, trying to keep as positive a spin on each situation as possible.

Before I begin where I left off in my last post, I will share with you that we had good news at the end of December. As I take you through the chronology since Joe’s last hospital visit in November, I want you to keep in mind that as a Christmas present, we received news that the tumor size went down.

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Early November

At the end of October Joe had finished his five treatments of IVIG infusions to treat the Guillain Barre syndrome. The treatments left him feeling more tired and weak than usual. Just a few days after the last IVIG, he began a round of oral chemo. With each passing day, his energy level became more and more depleted. By the end of the week, he wasn’t able to wake up long enough to sit up and take his pills. One of the pills was the steroid which was helping diminish the swelling in his brain. I know that it sounds crazy that someone could be too tired to sit up to take pills, but that’s how he was. Each day, Joe got a little worse. I called the doctor and after talking to the nurse decided that I didn’t need to take him in because he was still coherent. I was still concerned, however, because he was getting off of his pill schedule. When I came home on the fourth day after finishing chemo, the only thing he knew was that I was his wife, Gillian, but he couldn’t answer any other questions like “Do you know what year it is?” I was unable to get him to go to the car to go to the hospital, so again, I called 911. Lakeside Fire Department showed up first, then the paramedics.

Over the next several days, the staff at Kaiser worked to bring down the swelling in the brain through medication as well as looking for other possible contributing factors. I was frightened. The doctors couldn’t tell me that he would get better. I felt powerless and distraught. All I could do was hope and pray. All the doctors could do was medicate and wait. Slowly, Joe became more and more aware of where he was and why he was there. I began to breathe again and the flower of hope once again began to blossom.

I was thankful to be able to bring him home. Over the next couple of weeks, he was really weak. He never knew when his legs would just decide to stop working. I decided to look into moving to a downstairs apartment. Living upstairs felt like being trapped, not with bars and locks like in a jail, but like the deep moats they put in as barriers at the zoo. It looks like the animals could get out if they really want to, but they can’t in reality.

Joe had another MRI and an appointment with the neuro-oncologist towards the end of November. As the doctor pulled up the MRI pictures, I could tell by the look on her face that the news was not good. She pulled up images from the previous month and there had been a significant change for the worse. The tumor had both grown and become a lot more reactive with the MRI die, both factors indicating the presence of the most aggressive cells, glioblastoma multiforme. NOT GOOD!

Desperately, I fought to keep a brave face. I couldn’t let Joe see the weakness inside. I wanted to give him strength to process the information. Not fully understanding the news nor wanting to connect the dots himself, Joe pushed the doctor for concrete answers. “How much time do I have?” The doctor was hesitant to answer but finally said that as an average (young- old, healthy- not healthy) time is 13 months. With those words, my heart stopped and I couldn’t breathe. “No! That can’t be right!” I screamed inside my head. I wondered if 13 months was from the moment I was sitting in the chair hearing this awful news or from time of diagnosis. I didn’t want to ask. Either of the answers would send me over the edge, and I had to keep it together at least for several more moments. All I could do was breathe deeply and try to will the tears to stay at bay behind the eyes until it was safe to let them out. I didn’t hear much more during the appointment, but understood that we needed to change the treatment plan. The new plan would be to go into the infusion center and receive chemo every 14 days.

This was the bad news that was so hard for me to communicate.

The new treatment started the very next day. Everyone in the infusion center was like a golden light of Hope. From the patients and family members to the nurses and the rest of the staff, we found so many new bits of Hope to call our own. Both Joe and I were trying to be strong for the other, but we were on our reserve tanks and almost completely drained. Those we encountered at the infusion center helped us begin to fill the tanks back up.

Hearing a timeline in months took both Joe and me to a whole new perspective, a whole new leg of our journey. I found myself once again in unfamiliar territory.

If I were ever told that I only had a limited amount of chocolate that I could eat for the rest of my life, I would certainly savor each and every decadent molecule entering my mouth. I would also be careful about when and where I would eat the delicious morsel. I wouldn’t want to waste the experience of it by quickly popping it into my mouth and swallowing it in one gulp, or shoving as many as I could down my gullet as I drove from point A to point B. No. I would stop and turn my focus on the opportunity each time I found myself gifted with a piece and slowly savor each bite, swallowing only when I had to. I would also know that I wouldn’t have an opportunity to experience THAT particular piece of chocolate again, and if I memorized the event well enough, I could relive that event in my memory as many times as I wanted. That’s how I started to think of my time with Joe. My prayer to God was (and is) that Joe and I would be able to have good moments together. Since June, the nasty creature, Depression, was making that very difficult.

Soon I began to see my prayers being answered. The ugly creature, Depression, began to shrink, and I had my Joe back, first in moments, then hours, then days. As days passed, time with him began to taste sweeter and sweeter. I began to fill my “Thankful Cup” with well savored moments. As a result other cups such as “Strength” and “Hope” also began to fill. As Joe’s physical strength increased, we were able to go out to breakfast together, then Christmas shopping. Holiday meals with family and friends were quite enjoyable as well. We made the move to a downstairs apartment with the help of amazing friends and the “Incredible Cow Crew.”  Being on the ground floor seemed liberating. Joe’s physical strength increased every day. Soon it came time for another MRI and talk with the doctor.

Just after Christmas we met. The doctor explained that the images hadn’t been read yet, so she’d be looking at them for the first time with us. I held my breath. I was thankful that Joe had been feeling so much better, but anxious to see if the images reflected the outward appearance. As she pulled up the images, I watched the doctor’s face, knowing that I would learn a lot more from her face than from looking at the images myself. I saw possible confusion on her face. I wasn’t sure of the emotion, but it didn’t seem like dread as it had the month before. She pulled up November’s images to compare. They looked quite different to me, but I didn’t know what that meant. After what seemed like hours, she finally spoke. “This looks much better,” she said. Then she proceeded to explain what she was seeing. As Joe and I listened carefully, I began to wonder if I was comprehending correctly. Eventually the words, “remarkable change,” found their way to my ears from this very conservative doctor, I believed the news was good, not just good but “remarkable.” The change in the tumor was certainly consistent with the way that he’d been feeling. The biggest news for me was that the presence of aggressive cells seemed almost gone according to the images. Those were the really bright patches in November’s images of the tumor. Now the tumor was mostly a dull grey, still there, but less scary. Merry Christmas to us!

Joe and I left the office with our “Hope” cups much more full. I don’t remember much of the rest of the appointment, except that we were going to continue with the treatment and do another scan in February.

This news was obviously quite different from November’s news, but I didn’t have the courage to put it in writing. I feared (and still do) that the good news was temporary, and that by putting it in writing I might be painting a big target for another disastrous blow. I wanted in some way to keep things a little under the radar.

It is so easy to look at Joe’s situation and scream to the heavens about the unfairness of it all. In our lives, many of us learn from an early age the importance of controlling as many aspects of our lives as possible in order to affect the best possible outcome. I work with kids all the time helping them identify opportunities for choice and predict the possible consequences both good and bad. As long as we are in control of a certain number of things, our lives (in this country) can pretty much be what we wish to make of them. (At least that’s how I choose to see things.) When things happen beyond our choices where we have no control, it’s really hard to let go of the idea of being able to control one’s own destiny. At the same time, it’s really hard to believe that there exists a power greater than human comprehension who has your best interest in mind. Both easily can leave you with feeling that not only do you have no power over the situation, but IF there even exists a higher power, pleading for a change in the situation would be fruitless. If every day is a bit worse than the day before (sprinkled in with some days MUCH worse than you thought possible), AND the number of days are limited, (with the count becoming exponentially smaller), it is really hard to find hope. One choice is acceptance of the situation without hope, and that is a really sad, dark place to be. This place I call, “Truly Hopeless.”

However, incredible blessings can be born from such a dark place.

While up at Camp Cuyamaca for 6th grade camp, I noticed dark, burnt trees piercing through the greenery covering the surrounding mountains and was reminded of the vast devastation left in the wake of the Cedar Fire several years ago. Soon after the fire, Joe and I took a drive through the mountains. No visible evidence of life was left. Blackness covered the landscape most everywhere the eye could see. It was like driving through some alien planet that could no longer sustain life.  I asked one of the counselors about the impact the fires had on the camp property. One of the things he described was the blooming of the most amazing wild flowers he had ever seen during the spring after the fires. Those fires had changed the landscape dramatically, taking away so much life, stripping the beauty we were all used to, leaving the land seemingly devastated. It was only because of that devastation, however, that the land was also given what was necessary to produce beautiful flowers. I can only imagine the beauty of the flowers contrasting the barren land, making them even more stunning.

Each day since that positive December meeting I’ve been able to recognize as a true blessing. November’s news seemed to be the necessary blow stripping away Hope, leaving us feeling powerless, drained, and devastated. We had no choice but to give up Hope of controlling the situation in any way. We had to let go. In letting go of the Hope of influencing the situation, I found myself clinging more desperately to Faith. Then I saw it happen. One little change for the better as the Joe I know began to come back to me. Just as I noticed the incremental changes last June that alerted the doctor to order the first CT scan, I noticed the incremental changes as the Joe I know came back. With each small change came an enormous level of Thankfulness, and my grip on Faith grew stronger. Soon my cup of Hope was filling once again. It didn’t take long for the incremental changes to become drastic changes bringing more Thankfulness, Faith, and Hope. Having “control” over the situation was no longer the center of my perspective, and with that I was given an incredible gift of sight, the sight of Thankfulness. It took stripping away our landscape to dark devastation for the small seeds of Thankfulness, planted long ago, to get the nutrients needed to grow first into small buds, then into full, blossoming flowers.

It is an incredible blessing to be able to cherish each day. Right now I accept that anything could happen. And I accept that much of what will happen is beyond my control. What I can do is identify each positive moment like one of those limited morsels of chocolate and savor it. Being able to identify, memorize, and savor special moments is a gift for which I am very Thankful. J

Thank you again for all of your prayers!

Love,

Gilly




Tuesday, November 15, 2011

God Doesn't Give Us More Than We Can Handle... REALLY?

How many of us wish that we had a dime for every time we heard "God doesn't give us more than we can handle" as we are going through tough situations. How many of us have said it ourselves to a loved one while searching for comforting words? It is comforting to believe that eventually the trial will end you'll be okay on the other side.

A couple of years ago while searching for comforting words to offer a friend I examined that saying more closely. I asked myself, so what if someone is strong enough to endure, does that knowledge or belief really make it easier? Does it take away the pain? Does that mean that stronger people are destined to endure more difficult trials simply because they are stronger? How is that fair? Who would want to be stronger if only to endure more pain? Suddenly this saying meant to bring comfort seemed to be doing the opposite.

As I thought about this saying, I searched for the positive. Finally it hit me... Maybe that saying is not true after all. Maybe God does give us more than we can handle. Maybe we are given more than we can individually handle so that we are given the opportunity to lean on others. In this thinking I came up with my new belief.

I believe that in life we are given more than we can handle. As we are pushed beyond our individual capacities for surviving life's trials, we lean on others when we wouldn't otherwise. As a result both parties are blessed, both the giver and the receiver. Acts of kindness are born out of love. I believe that God exists is in that love.

I have felt much more comfortable in the giving help side of that relationship than in the receiving part. Through this journey, I have certainly been forced into a place where many times I cannot walk on my own two feet, and have had the blessing of leaning on others. As the weeks and months have passed, I've felt more wobbly, but not really known how to reach out. I know that it sounds silly as so many of you have offered to help, sometimes specifically, sometimes generally, but the offer has been made hundreds of times since the beginning of this journey. Often as people have said, "Would you like me to..." my response has been, "No thank you, I've got it." As I wrote previously, it's easy to feel alone when not accepting help of others. Much of my feeling of aloneness has felt paralyzing, where I've wanted help, but hadn't known how people could help or even simply saying, "yes," when help is offered.

Slowly I've been figuring it out with the help of loved ones. As specific help is offered, I've been better at saying, "yes." One thing that has helped me has been when I've thanked those who've helped, they've frequently responded with gratitude in allowing the help. And that is where his idea of God's existence living in the love fueling these acts of kindness resurfaced.

I also know that through such trials we have opportunities to grow that we wouldn't have otherwise. Without such adversities, how would one grow? What would life be like without such growth? Thank goodness we have each other to lean on through these pains.

Thank you to all of you who've helped both Joe and I stand when we've been too weak to stand on our own. <3

Gilly

Sunday, November 13, 2011

Thanks for the Umbrellas

As it poured down rain yesterday, the title "Here Comes the Rain Again" popped into my head. But then I thought about the wonderful kindness shown to both Joe and me this past week through the most recent trial, and I thought of umbrellas. Umbrellas that give shelter from the rain.

Joe began a round of oral chemo Nov 1st. The plan was 5 days of chemo this month. Then 5 next month, and so on. We will be altering that plan.

As the days went on, the more tired he got. This was not surprising. I know that chemo is poisoning the body as well as the tumor. I know that this isn't easy for the body to take. So, I wasn't too concerned until I arrived home from work Monday. He complained of a terrible headache and was asking for pain pills even before I put my school bags down. I gave him the pain pills, then noticed that he hadn't taken his morning pills. One of the pills is a steroid. The headache made sense knowing that he had missed the steroid. I gave him the steroid, and asked him to take it. He did. This was unusual because he had been getting up and taking them religiously for so long.

The next morning, I brought him his pills before I went to work. I tried to wake him and ask him to take his pills. I told him that I was worried about his brain swelling if he didn't take the steroid. He would open his eyes, stir, and say that he was trying, but I couldn't get him to wake long enough to take them. I had to go to work, so I left them on the nightstand beside the bed. When I got home, they were gone, and he was on the couch. So, I hoped that he had taken them.

This routine occurred Tuesday and Wednesday. On Wednesday, I called the nurse to see if she thought I should bring him into the ER. She said that as long as he was cognitively aware, keep him stimulated, but I didn't need to bring him in. When I arrived home on Thursday, he had another painful headache. I gave him pain meds and asked him some simple awareness questions. The only thing he seemed to be aware of is who I was. So I told him that we needed to go to the ER. I tried for about an hour to get him to go to the car. He was too confused to follow my directions. So I called 911. The paramedics arrived, asked him more questions, and brought him down to the ambulance.

After admission in Kaiser ER and a CT. It was revealed that he once again was suffering from swelling on his brain. He was admitted that night... well really it was 6:00 AM Friday morning.

The neurologist examined him in the morning, and after talking to his neuro-oncologist decided on a course of steroids. She didn't put him on the same massive dosage that he had been on in early September, but more than he had been currently taking (or not taking). With this came the understanding that it would take longer for the positive effects to be felt, however he wouldn't have as far to step down once he stabilized. He spent Friday pretty confused. He just wanted to rest on his side and not be messed with. He didn't understand why nurses kept coming in stabbing him with needles.

On Saturday, he was feeling better. He woke up in the hospital before I arrived in the morning and didn't know why he was in the hospital. He called me which was a good sign. Later Saturday, he took a walk around the nurse's station, and I was comfortable taking him home as long as he agreed to take his meds. He wanted to get out and promised to take his pills.

We've spent a quiet Sunday at home. He has asked several times about his pills. He made sure that he had taken what he needed to take. This was good for my heart. One of our neighbors came over for a bit, brought lunch, and watched some football. Later, his dad stopped by for and hung out for a bit as well.

Joe has still been a bit confused about time today, but has been so much more himself. The doctors and nurses at Kaiser were patient and kind through his stay. They took excellent care of him during his stay. My friends and family took wonderful care of me. I am so grateful for the love and support. It is so nice to know that we are not in this journey alone. It's nice to have an umbrella when it's raining.

Tuesday, November 8, 2011

Somewhere Over the Rainbow


Usually before I begin writing, I have an idea of where I want to go. A title will hit me or a theme where all of my thoughts begin attaching themselves. Tonight, this is not the case. I just know that I need to write. I've been waiting for a couple of days for some kind of theme to come to me onto which I can attach my scattered thoughts and and form some sort of flow of writing. A beginning would be nice, but I haven't even been able to find that.

So... here it goes... I don't know where it's going, but not knowing that does not need to be a reason to delay starting.

I took a break.

There, I said it. I did it. I took a break from being at home.

Last weekend, with the help and support of a dear friend, I was able to not just escape to the fabulous Galway Downs for a wickedly wet horseshow, but I had the honor of participating.

Liz owns an amazing off-the-track thoroughbred named Sue. She has taken her through a long, patient education process introducing her to her new job-after-racing. She has brought her along wonderfully on the flat and over fences.

A couple of months ago she asked me if I would be willing to show her at the November Galway. It would be her first "big show." In my mind, I thought, "Willing? I would be honored and excited!" I love the mare and very much enjoy showing and hadn't had the opportunity to show in a long time. At that point I had never ridden the mare, but had an idea that I would enjoy her.

Soon after Liz and I had talked about the show, Joe went into the hospital, and was diagnosed with Guillian Barre as if the tumor in his brain was not enough. So, a couple of weeks passed before I could get on Sue. Once I did, I felt an instant filling into a cup of joy that I didn't even know existed. Sue is by no means an easy horse, but that is one of the things I like about her. She likes to work hard and requires hard work out of her rider. I love her work ethic. She is not very tall (by my standards- but my horse is 18 hands so I know I'm a bit off from the average), but packs a powerful punch! Liz has done a wonderful job working with her, and she is a joy to ride. Even when she's throwing a tantrum, I enjoy her.

It was about the third time jumping her that I felt that I scratched the surface of her power. I approached two square oxers in a combination that she was a little afraid of. Instead of stopping or hesitating, she flew over them as if she had wings. Those watching said that she nearly cleared the standards. I know that many of you reading this have no idea what oxers or standards are (teachers... not the standards that we teach to...), but just know that we were quite high off the ground! From that moment on, I could feel that as long as I could stay with her and out of her way, we could jump anything! That is such an awesome feeling!

Riding her brought me a happiness in riding that I hadn't felt since before my horse, Payton, got injured. It's been a good two years since he's been consistently sound, and I've greatly missed the riding part of our relationship. Sue is very different from Pai, but brings me the same flavor of joy.

Since Joe's diagnosis, people have been encouraging me to "take care" of myself. I've done that as best as I know how. I've allowed myself to cry when I needed to, leaned on friends, walked on the beach, and things like that. Riding Sue and being able to participate at a show was a whole new level of "taking care" of myself. Instead of temporally relieving the pressure valve as the other activities, showing Sue filled me with something so much more, joy and purpose.

The show itself was filled with buckets of rain and slippery footing. There were many challenges that Sue and I faced just to get in to the show arena. Several times both Liz and my coach, Terri, told me that if I felt that she couldn't handle the slippery footing, to pull up. Each event certainly presented a challenge in making her first "big show" a positive experience. Having that permission made it easier to proceed. But Sue was not interested in quiting. She was certainly up to the challenge! Around each event she got better and better, ending strong and positively. It gave me so much joy to share that wonderful experience with such a fabulous horse.

I was surrounded by rainbows. The morning of the first day, there was a double rainbow. I had to take a feet picture. As I walked down to the start box on the last day of competition for cross-country, there was a rainbow over the course. Both made me smile.

While I was away at the show, I allowed others to help with things at home. It was hard to let go of responsibility, even for just a couple of days. I wouldn't say that I came home "rejuvenated" and ready to get back to the challenges of the our new journey. The show was a lot of work, and even though Liz took care of Sue and me most of the time, I was tired upon returning.

But I do feel like I came back better educated. I'm beginning to recognize that I not only can, but need to let go of some responsibilities. I'm seeing where those that have been asking for so long can step in and help. I'm finally ready. I'm grateful for everyone that has patiently waited for direction. Up until now, the only direction I could give was asking for prayer. I'm grateful for the prayers, and now I'm ready for accepting actions that so many of you are willing to give. Pamela and Cindy helped me see that. I'm thankful for Katy for organizing the help. Believe it or not, simply organizing who can help with what was just too overwhelming a task for me to undertake. I appreciate how Katy asked specific questions, then said that it would all just get taken care of, and she would organize it. I think that I only have so much capacity for organizing, and I need to use that energy for organizing Joe's schedule and care. My mum took it upon herself to not ask if I needed meals, she just started making them for me. She knows what I like. She's an excellent cook. And now I don't have to use energy to figure out what to eat. I'm grateful for Courtney taking over caring for Pai. It takes so much weight off my shoulders knowing that he is in her hands.

To Liz, I owe the biggest thanks for putting Sue and I together at the Galway, as well as Samantha and Andrew for opening Hotel McLean for us. I'm thankful for Terri for coaching me not just in riding, but so much more! I'm thankful for Debbie listening and encouraging. I'm thankful for encouraging words and hugs from Taren, Carolyn, and Margie. I'm thankful for dancing with Keelari, Laura, Gina and Andrea (almost Bec).  I'm thankful for the smiles and hugs from all the people I got to see at Galway this weekend. It was so much fun to dance, eat, and laugh. The couple of days amongst the incredible people who call themselves eventers reminded me of who I am beyond this journey. It was a big event with a lot of exciting things going on. And all of the excitement paled to the blessings of being surrounded by some of the strongest most caring people on the planet. (I'm sure that I've forgotten to menttion some)


I know that I'm not alone in my role in this journey, but until I allow others to help with their actions, it's hard not to FEEL alone. Being away for the couple of days helped me put things into a new perspective. I returned from the event with not only the wonderful memories, but a plan of empowerment and feeling better equipped to manage this leg of the journey.

Once again, thank you all for you love, encouragement, and prayers.

<3 Gilly