Spirit In The Sky

I've dreaded writing this blog.... Perhaps the finality of the words is an unsettling reality that I have attempted to escape. But as days pass the need to share the most tragically beautiful events that transpired urge me to write.

In my previous blog I spoke of love. Love that exists without time or reason. A love that was so inspiring it almost made me fear never meeting my modeled expectations. It only seems fitting perhaps that the story today begins on valentines day.

On February 10th we celebrated my moms life with a jazz concert at our home. The house was full of music and love. Her closest friends and family gathered around her hospital bed as one of her favorite jazz singers serenaded her with heavenly notes. She waved her arms, sang along and smiled for what seemed to be an eternity. She truly was the life of the party. (Side note: when her good friends and I sat to plan out her services with her she was so sad about not being able to be at the biggest celebration of her life..... Little did she know that she would be there). The night was a beautiful memory of her and her spirit. It was what we now know to be her send off from this life to the next.

The next day she slept more than ever. Who wouldn't after throwing a party like she did? We thought nothing of her tiredness, in fact we expected it. But it didn't seem to go away. On Tuesday the 12th my moms nurse came to do an evaluation. I had met with her social worker Patty the day before to talk about the major decreases in her abilities and to gain insight on how to better care for her. Trish could see the decline and let me know that she thought we might only have a one to two weeks left.

I called Steve.... She had been asking for him..... Made arrangements to take a leave from work. All was arranged. Valentines day would be the last day for me at school and I would spend the next two weeks holding her hand, watching downton abbey with her and laying with her in her hospital bed (don't laugh, I did this often). That day I went to work, celebrated love with 22 of my loves and counted down until I could start my time with her.

At 2:15 I got a text saying Mnsgr. had a break and was headed to the house to see my mom. I rushed home wanting to see him and to be there as be prayed with her. But when I got home we could all see that something wasn't right. Steve was holding her hand and Rosio was wiping down her face, keeping her hydrated... But she wasn't responding. I was beginning to realize that the words "I love you" she had spoken to me the night before might be her last. We decided to do her last rites. She opened her eyes for a brief second as she heard Mnsgr. begin to pray. Another testament to the strength of her faith and for the desire to be united in faith. We gathered in the name of the Father and the Son and the Holy Spirit and began to set her free.

The night was full of those she loved. Hospice put her on crisis care and told us that we were in the last few days. We took turns holding her hand. The children she had helped to raise were there beside her and the friends that she had made family were holding mine and Steve's. The night went so fast and so slow.( For those of you who have never witnessed someone as they pass I will spare you of the unpleasant details. ) It was nerve wracking. I hadn't slept in days..... Countless nights of nightmares of holding her hand as she passed on valentines day (I shrugged them off knowing hospice ad given us much longer). I sat beside her and Steve. I counted the seconds between her breathes and held mine in agony until I was slightly soothed by her next attempt to gasp. I think about these breathes often as I breathe now. The smallest things we forget to be thankful for.

She went fast. She didn't live in agony for days. She peacefully went (well, as peaceful as you can in these circumstances). She was surrounded by those she loved.... I held her hand. And at 5:20am, only a few short hours after our valentines day ended, she was united again with her valentine. All those present that night said they could feel my Dad there. I recall whispering to my friend Sean that I could feel my dad with me.... This was quickly followed by Peggy telling me she saw my dad there as she walked through our front door. There's no doubt in my mind that he came for her or that he spent the last few hours and days with us, patiently waiting for his love.

Now that she's gone I think back to the beginning moments... The fears, the doubts.  I remember my moms strength as she accepted the news with faith and grace. Her biggest fears were that she wouldn't remember us or my dad, that she would lose her intelligence, that she would die with just me present and that she wouldn't live the rest of her life the way she had lived it before. She has asked God for many things in her life and He has given her them all. Her faithfulness in Him resulted in an outpouring of faithfulness to her. And as she wished each and every wish He gazed at her from above and granted every one!

My mom was the smartest, strongest, most loyal woman I know. She taught me the true meaning of selflessness and love. She fought battles and overcame them. She accepted hardships with grace. She gave it her all when she needed to and raised a lot (a lot) of hell when she needed to. She was blunt and honest. She was true, and even up until her last breath she taught me to trust in something bigger than myself. She gave me strength in times of weakness and reminded me that the only place you need to run to is to your knees.

My parents were the most amazing people I know. They were who the song " only the good die young" was written about. They lived each moment as if it was their last and never stopped to think of regrets. As a child I watched them dance in the kitchen together, travel the world together, hold each others hands as they sat together, and never once take the other for granted. They were each others biggest fans, and mine and Steve's biggest fans. And now I look up and see them together, hand in hand as they belong, toasting us with a glass of wine and reminding up that "this is as good as it gets".

Love, Love, Love

I'ts hard not to think of love during the month of February. Everywhere you turn there are balloons, chocolates, flowers and cards that have the words love written all over them. People seem to walk around either more happy or more sad depending on their current love life status. In class it's a time for us to reflect on God's love and all He does for us. We've been reading about St. Valentine and his works of love throughout his life; How he fought for Christians and how he fought for marriage. His belief in marriage and it being so sacred that he risked his life to marry Christian couples in the Lord's grace makes me reflect upon the love that I have been brought up in and continue to exist in today. 

Never in my life did I think that I would be 27 and writing a blog about what it's like to lose my mother. I never thought I'd live through the day when I heard "She has brain cancer and it is terminal". I definitely never imaged that I would hear it only 2 short years after I heard the words "Your Dad died". Life has proven to be a struggle over the last 2 1/2 years. A struggle I'm not sure I was ever prepared for. A struggle that I'm sure will continue even after the day when I have to say "She's with my dad now". The struggle lies in losing those that you love and in learning how to live a life without them here on earth. 

People ask me every day how I remain in relationship with God after all that I have suffered over the last two years. They ask me as though it's a difficult thing to do. My response is this. How do you not live in relationship with God through the struggles in your life? If you have no faith in Him and no faith in eternal life, then how do you get through the idea of losing those you love? It is in my relationship with God that I am consoled. The promise of eternal life is one that is given to all and through that promise it comforts us in the knowledge that we will all once again be reunited in a place so much more than the one in which we exist now. If anything, suffering WITH GOD makes me strive harder to life for him so that I too may end where I know both my parents have and will go. 

The love of God is a love that I feel blessed to have but also one that has been given to me. My parents exemplified God's love in their every day lives and in their marriage. The testimony to that love exists in our home on a daily basis. It lives in the people that have surrounded our family in it's most difficult hours. It was obvious in the filled peus and packed botanical gardens at the celebration of life we held for my dad after his passing. It's evident in the hospital waiting room that was filled day and night with almost 40 people for 5 days straight as we awaited every drop of news from the doctors upon her diagnosis. It continues to exist today as our home is FULL of people who care and love for my mother and family. And that love is what helps us get through the struggles that we face. 

But this love for God and trust in His plan is not a cover either. It doesn't hide the sadness and sorrow that is felt on a daily basis. It doesn't remove tears from our eyes or frustration from our hearts. These emotions are gifts from God that allow us to deal with the plans He has that we don't always want to face. He allows us to be angry to cry to be confused and scared. Having these emotions every minute of every day doesn't mean that we lose faith in God. It doesn't mean that we question His love. Losing faith in God would be walking away. And though it might be easier to do that at times of difficulty, I am reminded that His love is what will reunite me once again with my earthly loves. If my desire is to see my parents again then I have to strive harder every day to be more like them and more like Christ so that I go where I know they have gone and will go. 

That being said please do not be fooled into thinking that we have remained strong through this struggle. We are weak and it is rough. There are no days that pass where tears are not shed and where frustrations are not exposed. For those of you who have watched someone you love deteriorate or have walked this path with us then you understand that strength is merely a thought or idea that exists rather than a trait you possess. Death on earth sucks. There's no other way to say it. It's hard, it's difficult it breaks and bends you to points where you no longer feel as though you can take any more. 

These blogs are not meant to give a false understanding of the hardships we face. They are not meant to make it appear as though we are always joyous through this trial. They are short updates on how she is doing in order to keep others informed. Perhaps I have lacked in truly expressing the emotions that go along with each step she takes in the progression, but each day as she weakens and loses more and more control of her body and mind our hearts rip a little more. And the pain that is felt is one that I cannot even begin to describe. 

I don't think we have much more time. The worsening of her symptoms has begun to increase rapidly over the last few weeks. She had a few falls and has become bedridden for the most part. With two peoples assistance she is able to stand for a few seconds before her legs give way but beyond that her mobility is limited to the upper half of her body. Her confusion has become more and more noticeable with each day that passes. Her wit and personality remain and for that we are grateful.  

The stress is high (if me writing this blog at 4 am on a Thursday is not a reflection of the loss of sleep then I don't know what is). This time is hard. 

I think that this blog has been the most difficult to write and will probably be one of the most difficult ones for you to read. But it's real. It's life. It's my life and her life. 

As we prepare more and more for the funeral and for the end, I pray that you allow the lives of both my parents to deepen your faith in something; if not God, then in love. And that you take from their lives all that they hoped to share: love.  

"And now these three remain: faith, hope and love. But the greatest of these is love." 1 Cor 13:13

We've Made It.....2013 Here We Are.

Welcome to 2013.

4 1/2 months ago we were not sure that my mom would make it to this year....but here we are. It's the middle of January and we are still enjoying time with her.

I was able to take some time off of in December and begin doing some much needed work around the house. We re modeled the backyard and side yard so that my mom could assess the grounds more easily. We began going through personal belongings. With the help of Pat Villa we created a system on our ipads where we can document each item and even have my mom record information about it! It will serve useful in the future.


We even went wine tasting in Temecula 2 weekends in a row with her best friends.

I was able to spend some time with a good friend and his daughter. We celebrated "Christmas" at his house on Sunday evening. My mom got to spend some nice time with his daughter Bianca. I know that this is something that she will cherish. Steve, Jenelle and Mr. Mayhem came down on Christmas eve. Our good friend Jenny Ripley and her boyfriend Ihab were able to join us for dinner. I made my dad's traditional Christmas Eve meal: roast beef and Yorkshire pudding, asparagus and salad. I even made butternut squash soup (since my mom can't have any of the leafy green vegetables).

Christmas morning we sat and opened gifts. We didn't have the fireplace lit, but other than that it felt like Christmas. I spend the afternoon at the Caughey's house and Steve and Jenelle spent some time alone with my mom.

New Years was spent at Roberta's house. We had a wonderful time with the McDevitts, Roberta, her son and his fiance', Dell, Pat, Rob and others. The evening was one that I know we will all remember.


Since then I am back at work. I am loving every minute I spend with my students. It's hard to leave her during the day but she is in such good hands. Moving around has become more and more difficult. Even one or two steps can be traumatic for her. She can still walk a short distance (10-15 feet) with assistance once or twice a day.  Standing up is becoming more of a chore but she is a trooper and continues to fight! Her desire to be about doing things has decreased even though her abilities to do so have. It's a difficult role reversal as I have had to begin to tell her "no".

We had a birthday dinner for Roberta. We all sat and ate around her hospital bed in our living room (a very common occurance).

 Another medicine mishap occurred and her blood became way too thin. She was bedridden for a few days but has made a full recovery. She was even able to drive up to Anaheim (where Steve was on business) and see Steve for his birthday on the 17th.

We were able to spend a lovely evening at the Caughey's for dinner. What a nice night with her closest friends of over 25 years!

Life is a roller coaster. She looks happy but we know what the tumor is doing. Her memory is still in tact but the logic and reasoning are starting to fade quickly. At the movies the other day she asked things like "Am I in my wheel chair or the movie theater chair?".  She is caught saying this phrase commonly as well : "Yesterday was yesterday, Today is today, and Tomorrow is tomorrow." It seems as though she's fighting to maintain her understanding though the tumor is really deterierating it.

She's a fighter....She's strong....She's loving. She may call you 50 times in a row or not understand everything in there, but she's still able to love and be loved! Thank you for fighting this journey with us. We pray for you as you pray for us and are forever grateful for all you do each and every day!

Thanksgiving/MRI Results

Thanksgiving came and went. We had a lovely holiday that I know we will all remember.

Wednesday afternoon Steve, Jenelle and Mr. Mayhem came down to celebrate a Mexigiving. We had a delicious mexican feast washed down with some of Steve's original margaritas.

Mom, Steve,
Jenelle, Bethany and
Mr. Mayhem
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Monica, Tanya, Cheryl
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The day was lovely. Monica flew in to spend Thanksgiving with us and see her mother who has been here for a long time helping to take care of my mother.

Jenelle left later that evening and took Mr. Mayhem to see his other grandparents. Steve stayed down in San Diego and we all headed to Roberta's for a beautiful Thanksgiving there. The weather was amazing, the food was fabulous and we all truly enjoyed being with one another. Roberta's brother Rich joined us and Bobby flew in to spend the holidays at home as well. The McDevitts stopped by for some fine wine and dessert as well.

 Mom got all dressed up and looked amazing. Though the Notre Dame Irish hat didn't match her outfit it was a gift from Bobby that she wanted to wear. It also was a big weekend for the fighting Irish and she had to show her support.

Steve and I on Thanksgiving day.













The Williams Family together.

Roberta's beautiful table!








Shortly after the Holiday was over we got ready for Christmas. Steve and I got most of the boxes out and began to decorate for Christmas. For those of you who are normally at our house during the holidays' you understand that our house typically "throws up Christmas". With my moms 500+ Department 56 homes, our indoor AND outdoor Christmas trees and our larger than life stalkings, our house it quickly transformed into the north pole. This year we maintained both trees. (Jenny Caughey even dried the fruit and got the cinnamon sticks to hang on the outdoor "nature" tree). We only put up 50 of the houses but we still hung the stalkings by the fireplace. The house looks like Christmas. We still have poinsettias all around us. It just wouldn't be Christmas with out my dad represented everywhere. They are beautiful and it makes us miss him even more.

Because we switched to hospice after she finished treatment, the MRI was not an insurance paid/scheduled routine. How could we go without it though? We scheduled it anyways and went in this week. After 6 weeks of INTENSE treatment we have the results. They did 7 days a week of chemo, the chemo drip once a week that knocked her out and 5 days a week of radiation to the head. They pulled out all the bells and whistles. They went in guns blazing...and...they held the tumor off. It didn't grow. In fact, the height of the tumor shrunk from 4. 7 mm to 4.5 mm. The diameter, width and depth of the tumor stayed the same. It''s definitely not a miracle but it's a blessing to us. We got more time. She gave us more time. She fought to let us have the time to say goodbye and we are grateful to her for that. It was rough on her, she was weak and miserable, but she did it because she loves all of us. And we love her for doing it.

We are going to enjoy the holidays together ( I will put up picks) and enjoy every day that we have. The tumor is aggressive and it will continue to grow...but we have been blessed abundantly so far. She is herself again (now that the chemo is out of her system). She wants to enjoy her time and wants to spend it with all of us.

The days are tough...the nights are tough...the emotions are high. Her logic and reasoning is not there and I have to constantly work through her social schedule to correct the things that just don't work..my frustrations are few and the joys are high. She amazes me every day with her strength. She never complains about anything!!!! She truly handles this all with grace.

We are thankful for each day and for all of you who walk this path with us!

It's been a while....

After much grief from several family members and friends I am giving in and writing another blog. I apologize for the long delay...there has been so much going on. It seems like just when things settle down with her I have to work extra hard at work to catch up on things that I have missed. Anyways...we're back and I'll try to stay on top of it more.

We are still home. The hospital bed has been amazing is allowing us to be comfortable. She's close to everyone and everything and doesn't have too far to move.

Our mobility has become very limited. The thigh muscles are the first to go so we are unable to get her up and down any steps. This has limited us only to the downstairs half of the house. Unfortunately we only have a half bathroom downstairs. So...our friend Dell helped us put up an outdoor shower in the backyard. This has been a huge blessing for us. The instant water heater tank helps us to keep her warm and lets us use any outdoor water source. It's a pretty cool setup.

On October 18th (the 2 year anniversary of my dad's death- from a blood clot in his left leg) the doctors discovered 2 blood clots in my moms left leg. The pharmacy that we were going to had made a huge error and given my mother a medication that was not meant for her- written by a random doctor for another random patient. The side effects of this medication were of course swelling in her feet and ankles. Though they can't guarantee that those pills caused her blood cots, they also can't say that they didn't. This was another stress that was just not needed.

Lovonox shots and cummadin were given to her to help thin her blood. These shots, for those of you who are not familiar, are very strong and very painful. They are darted into the skin and leave huge marks on her skin. We had just finished our first round when we had to go back to the ER. The swealing just would not go down. Another round of shots it was. Things seem to be getting better but we are still waiting.

We are coming up on our 2 week anniversary of being off treatment. We're waiting for our hospice evaluation (hopefully soon). She's been able to decrease her medications from about 22 pills to around 12. We are also no longer diabetic. With the steroids and the chemo pills out of her system her blood sugar has become regulated again. Not having the 5 shots a day has made her feel less like a push pin.

We laugh at some of the child like symptoms that she has developed (or regressed to). She sings a song "Where does the wind come from? Does anybody know?". She has an obsession with buttons. She deletes EVERYTHING. From the contacts in her phone, to the text messages. The address book in her car or the shows recorded on the DVR. If you are texting and we ask you "who is this?" please don't be offended. She has just deleted your information from her phone.

I will not lie. She is fading pretty quickly. Some days are better than others. We love every minute where we see her shine through. I wish I could say differently. But...we are thankful for the moments, pray for more and keep asking God to grant us strength and guidance.

I promise that the next blog will come sooner than later. Thanks for the love <3

1/2 Way Through

1/2 Way Through......

We've made it half way through treatment. It seems like yesterday that we first walked in the doors of Dr. KoKa's office in the 447 building. The 6 week process of aggressive radiation and chemo has gone so quickly.

There have been so many ups and downs on this journey. Last week we were back in the hospital for another 5 day stay ready to be released to a nursing home. Thankfully her symptoms were somewhat relieved and she had a few good days near the end of the stay and we were able to detour her back to the house before the nursing home. We're still here! She's doing alright. We're still having our ups and downs. She still has her good days and bad days. Her symptoms go away and return on a daily basis but she's powering through them.

Her face is swollen. We tell her how adorable she looks. The doctors call it steroid swelling and have told us how common it is. She hates it. Mark Liggit is an angel and came over last night to shave my moms head. She's much colder now than she was before.

I thought I'd throw some pictures in for all of you!

 In the hospital when she first was diagnosed with the diabetes.

Mom when we first brought the hospital bed home

With her angel Tanya who has been taking care of her 24/7 and is AMAZING!

 

 Tanya and Jenny on my moms favorite day of the week "Jenny Day". Playing games to help keep my moms mind working! (Jenny is an angel!)

Her first hair cut by Peggy (when her hair first began to fall out)

With Mark Liggit who came and helped her out with her hair!

Megan and I who got to sneak away for an hour and have a glass of wine. This woman has been my best friend for the past 25 years and has been my rock the last two. Don't know what I'd do without her.

 At lunch with Paula (my dad's cousin/almost sister) who came to spend the weekend with us.

I'll try to keep updating and adding more photos. Thanks for all the love and support!

(Soon to follow will be what Steve and I call the cane chronicles)!

Pray that we can continue to have more good days than bad.

Much love,

Bethany

The Journey Continues...

Over the past week, we began to notice that my mom's memory was starting to get worse. Her confusion continued to increase. On Thursday night, we went to a special dinner to celebrate my parents 32nd wedding anniversary with a few close friends. It was a special occasion that we wanted to share together one last time. However, after the appetizers, my mom had a brain seizure, which immobilized her from the waist down.

This turn of events led us back to Scripps Encinitas where the doctors in the E.R. ran tests and took more scans, only to discover that the steroids that were keeping her symptoms at bay were no longer working. The tumor hadn't grown much, but because the steroids that were keep her highly functional were not effective, her symptoms were back and worse than before. In addition to this, the combination of these steroids and chemotherapy had taken their toll on her and made her diabetic. Her sugar levels were extremely high, and we have switched over to a diabetic diet. She was admitted into her own room on Friday and will stay there until tomorrow to give the doctors a chance to lower  her levels and give us some time to consider options.

The combination of steroids, chemotherapy and radiation have done their job to slow down the tumor, but have done greater damage on my mom's body than we expected. We have made the decision to do what is best to give her a high quality of life for the time she has left.

After talking with her treatment doctors and our mom, Stephen and I have decided to do the following: Mom will stay in the hospital until tomorrow, at which point she will be transferred to a nursing home for rehabilitation and physical therapy. We are still discussing with doctors what treatments we should continue and will hopefully know more within the next few days. We anticipate that she will be in the facility for at least a week, and then we will be bringing her home.

For those of you who have signed up to bring meals and drive my mom to and from radiation appointments, know how appreciative we are. We will pause rides for the near future, and may resume them once she is home if treatment is still part of the plan.

Stephen and I know that this part of our mom's journey may prove to be the hardest, but we are listening to her wishes and are going to chose what's best for her. Thank you for your continued support and prayers. We love and thank you all.