Friday, August 24, 2012

A Tea Party For Lindsey

While Lindsey and Josh were at the hospital, I had offered a quiet sincerer prayer about how to facilitate quality time with Lindsey when she came home. There came a sense of urgency as we watched her physically decline in the hospital. I knew I wanted to do something special for her. I was reminded of a tea party club we had organized for Jessica and Lindsey when they were 10 and 11. We had included all the neighborhood girls and once a month we would take turns hosting a tea party in each of our homes. Each girl would bring a teddy bear, a doll, or a stuffed animal and the themes were organized and responsibilities divided amongst the mothers and daughters.

We started with a 1770 tea party featuring the revolutionary war. We played parlor games, listened to stories and made self portraits. Next we had a valentine’s tea party and made hair bows, talked about manners and how to pay a proper call when visiting. The next tea party we took a field trip to a doll museum and celebrated dolls made from different countries. The following month we had a good old fashioned southern tea party followed by a tea party honoring girls and women during the World War II era by having a talent show and learning how to do pin curls and make victory crowns. We even had a pioneer tea party and made pioneer crafts and handkerchief dolls.

The “tea parties” were organized so that we could learn about different women and different cultures from earlier times in history. Having the tea parties had another main purpose and that was to bring mothers and daughters together to strengthen us during our own time in history. Women have come together throughout history to draw upon each other’s strength during the good times and the bad times and they did this during “tea time”.

As we visited each time frame during our tea parties, we learned about women of courage who faced hard things and stood in their families as light bearers of grace and beauty. It seemed to offer an invitation to each of us as mothers that we do the same as women in this day and age. We also wanted to encourage our daughters to be light bearers of grace and beauty, in hopes that the legacy of strong women would be passed onto to our daughter’s daughters.

So in answer to my simple prayer, I had decided that we would have a tea party for Lindsey. All weekend I decorated the kitchen and the living room area with white lace draping from the light fixture above the kitchen table, straw hats, teddy bears, strings of pearls, paintings of flowers, pictures of the girls, pillows, dolls, stuffed animals and all the items you would see in a Victorian boutique. The table was covered in white lace with a collection of tea cups and saucers. Some had been passed down from grandmas on all different sides of the family. We had our best silverware, napkins, fresh flowers on the table, small muffins, cookies and of course, peppermint tea and honey.

There was a hot pink necklace for everyone as aunts, cousins, sisters, friends, grandmas, gathered to have a tea party with Lindsey. As everyone gathered I was reminded of Lindsey and her sister Jessica playing “tea party” all the time while they were growing up. Sometimes I would take the time to sit down and play with them. We would have so much fun playing with a miniature tea set and pouring pretend tea into the little cups. We would practice holding our little pinky out and pretending we were
royalty or something. It would all be very grand in our minds and our play created long lasting memories.

However, there are so many other times when I would be too busy to play, or so caught up in my adult world that I passed up wonderful opportunities to play with my girls. So in honor of the girl’s traditional tea parties, and in remembrance of our “tea party club”, we taking time have a tea party with Lindsey. She had come home Sunday afternoon after she had spent five days in the hospital with a new feeding device so everyone was gathering on Monday night. This grand tea party had been prepared Robinson/Victorian style.

As everyone was arriving, Josh picked up Lindsey and carried her downstairs, she was not quite herself these days. She offered a half smile as everyone greeted her, her cheeks puffy from the steroids, her eyes dark and distant. She joined us and we visited and laughed and talked. There seemed to be a hushed reverence about us. We all knew there wasn’t much time left with Lindsey and it felt good to be together in honor of her and her life but, also a little awkward.

I said some remarks and then everyone kind of took turns talking to Lindsey about the things they loved about her. Her eyes would light up as she made eye contact with the person talking. She would laugh when funny stories were recounted. Especially, when we were remembering some of the funny things she would do, like singing at the top of her lungs just to annoy all of us, or funny texts or phone messages that she would sing to us. She was always making up short jingles and putting them to music. She had always been so bubbly and full of life and now to see her light wilting was so sad.

We poured tea and ate cookies and muffins and towards the end of the party I passed out a few heirlooms that had been passed down to me from my mother’s mother to me. It seemed so out of place at this time in my life to be passing on some of the “treasures” and ceramic figurines that I had collected for the girls. I had envisioned me being quite older and all of us being together and the girls being able to pass on these treasures to their daughters. And now, that wouldn’t be happening for Lindsey.
Lindsey and Jessica had asked about these “pretty things” even as young girls. They were best friends and I couldn’t imagine them not being together when I passed out these treasures. I had promised both of them they would be able to have them when they grew up. So it was important that I follow through with this, with them both there and before Lindsey’s passing.

I tried not to cry as I read a beautiful analogy about tea cups and the process they go through to make them be so polished and colorful. It had been identified with the process of our own lives and how the heat of the fire refines our soul and helps us be polished and able to shine our true colors. I passed out the treasured tea cup sets that had been promised to each of the four daughters and to Hannah our daughter-in-law. There was a quiet hush as a few of us tried to hold back the tears.

I leaned over and kissed Lindsey on her bare forehead with a few extra kisses on her head. She wasn’t wearing hats anymore like she used to, to cover up her thinning hair or the scars on her head, she was fine coming to “tea” just as she was. It is so funny how hair, and makeup and what you wear seem to
have so much meaning in our lives and then after experiencing all this with Lindsey you discover that none of it really matters. Make-up, hair and clothes don’t really determine beauty.

Lindsey sat with us that day in her most lovely form. She had been stripped of almost all human dignity and yet she witnessed to all of us there that day that we are not our bodies that we are more than our bodies, because we could see her noble spirit showing us an undaunted spirit of courage and strength. And even though the flesh appeared weak, Lindsey’s spirit radiated glory and love to all of us in a beautiful way. Lindsey had become a woman that had done hard things and she had risen above her circumstances with faith and courage as she stood as a light bearer of grace and beauty. That day I was so proud of her!! I love you Lindsey. Your legacy lives on in all the lives you have touched. I hope they have tea parties in heaven.

Wednesday, August 22, 2012

A Little History

Lindsey’s condition at ages 14, 16, and 18 all required tumor extraction using surgical procedures on the   left frontal lobe of her brain. The tumors had continued to grow in the same place in her brain every 18 months, right between the motor control strip, verbal skill center and close to the optic nerve. She had been diagnosed with ependymoma brain tumors.

In spite of these health conditions in her teenage years, Lindsey had graduated from high school with a 4.0 grade point average, participated in a study abroad program in London and Europe, graduated from BYU with almost a 4.0 g.p.a. and had gotten married. I have always been amazed that someone could accomplish all this after having three brain tumors. She was teaching piano lessons, guitar lessons and violin lessons. She loved children. She was also working for me at the IHA. In the summer of 2010, when she was 24, she had started having severe headaches. However, there was no indication of tumors in the brain based on the MRI scans that were being performed.

The pain was so bad and we could find no relief, pain medication was not working so Josh and Lindsey moved in with us the first week of July.

We had no idea where the pain was coming from. Each time we went to the emergency room it was diagnosed as migraines. She had never had a migraine before. It wasn’t until four weeks of trip after trip to four different emergency rooms, and a spinal tap and more MRI’s that we learned that the tumors had spread to her spine.

We were shocked. It had been five years since her last brain tumor, and the brain was fine. Here the tiny tumors had spread to her spine and were attaching like a film along her back bone. She had pain in her back and her neck, plus, the spiking pain of the fluid. Her only comfort was having us rub her feet. We would each take turns sitting at the foot of her bed rubbing her feet. She would “sigh” a little sigh of relief and smile and if we left our post she would be crying from the pain.

We had no idea how serious her condition was. We didn’t fully realize what we were up against as we waited for the appointment with her neuro surgeon. Surely there would be solutions, we had always found solutions. . .

She never made it to the neuro surgeons doctor appointment. She was admitted to the I-med Neuro intensive care in the middle of the night on Aug. 15, 2012, because of the extreme pressure in the spinal fluid. She was experiencing severe headaches nausea, vomiting and passing out and we could find no relief. Her eyes were crossed and she was starting into seizures.

While we were gathered around her hospital bed the next morning, we noticed that Lindsey was losing consciousness. The pressure had been so high that her eyes were not functioning the way they were supposed to.  Her eyes were going cross-eyed and she couldn’t see. She was not responding to the doctor and was not coherent. They ushered us out of the room so that they could put in an emergency shunt to drain off excess fluids and relieve the pressure from the spiking fluid.

They performed the procedure and opened her skull right in her room. There wasn’t time to get her to surgery. Afterwards, we learned that she was dying and that the temporary shunt had just saved her life. She could have released herself right then and there from her dysfunctional body, and yet she chose to stay with us another year. She chose to stay with us even though she had an option right there and then to choose out.
We asked ourselves several times for what purpose? Perhaps we weren’t ready to say good-bye .  .  . perhaps she wasn’t ready to say goodbye .  .  . We still had lessons to learn.

Later that week she had surgery to place a permanent shunt in the right side of her skull that would continue to manage the spiking pressure from the spinal fluid. She came home a week later.

We were trying to help her get strong enough to start radiation treatments September 9. Radiation was my worst nightmare. I couldn’t imagine having to use radiation on the body to try to kill the tumors and watch her suffer. I could hardly contain my fear and my horror. All I could do was be strong for her and those around me while inside I was literally reeling from the horror of it all.

She had had radiation treatments after her third surgery at 18 and the brain was still clear of tumors, so in the hope of all hopes we went forward with radiating her spine. It was what she and Josh decided and so my job was to support their decision.

She was so sick they had to radiate her whole spine. She lost her hair and so much weight, I have never seen someone vomit so much, sometimes 7 – 8 times a day even with the anti- nausea pills. She looked like a World War II refugee. We had people coming and going. People volunteered to take her to and from radiation, I could not emotionally drive her to the radiation treatments and watch them radiate my daughter and treat her body like that. I couldn’t stomach it myself. I think during that time I would cry myself to sleep because of exhaustion and because of how hard it was to watch someone suffer. All I could do was be there for her when she got home from treatments and try to be strong and offer comfort and encouragement. We would talk, and laugh and cry together, and sometimes we would process out all the anger and frustration of why she was going through this. Processing helped us both so much.

We had people bringing meals and so much food, doing yard work, cleaning the house, and taking turns sitting with her throughout the day so Josh and Todd and I could keep working. We had charts on the walls, instructions for those sitting with her and regular phone calls back and forth with Josh and I as we tried to manage everything from work. Of course, during the day, we looked forward the most to talking to Lindsey and hearing her voice on the other end of the line. She would text us funny texts throughout the day and talk to us at night about silly things that happened to her and funny things that people had said or done during the day.

We had at least 50 volunteers helping us in our home over the space of nine weeks during the radiation treatments. She had to take a three week break because her blood count went so low. But, she was still suffering from the radiation sickness during that time and people continued to help.

Yet, Lindsey was so amazing, even happy when she could muster up a smile. She finished radiation around Halloween and the day after Thanksgiving we helped Lindsey and Josh move back into their Condo in Saratoga Springs. Lindsey and Josh went home for about ten weeks which included the holidays. All of us were thinking and hoping that she was going to be fine now and we all had a brief reprieve. A little bit of hair was coming back and she was gaining a little weight. We all had hopes that the treatments had worked.

We were all re-cooperating and hoping that life could return to normal. However, it was not meant to be. It was so devastating to get a call from Josh that he was on his way to the hospital with Lindsey and that we should meet them at the I-med emergency room. It was Valentine’s Day and Lindsey had had a seizure during Josh and Lindsey’s sweetheart dinner at a restaurant. None of us were really prepared to handle the severity of her situation. We all experienced so much sadness and grief as we learned that she would not be with us much longer.

Those next few days were a nightmare. As Lindsey lay in bed drugged and non responsive so that the she could come out of the dysphasia, we spent hours by her bedside. I had seen Todd tear up as we had gone through all these experiences with Lindsey in the last ten years but, it was the first time I saw Todd weep as he stood by her bedside and holding her hand as she slept. We were facing the fact that we were losing the battle and that she was going to die.

They sent Lindsey home with tons of paperwork and home hospice care. I remember preparing the master bedroom for Josh and Lindsey. They needed to be in a comfortable place, I was preparing the room so we could bring my daughter home knowing that I was being called upon to support her in leaving this world and transitioning to the next. So much sadness in my heart, shock and disbelief, surely this wasn’t happening.  
Lindsey’s time with us from the time she started having severe headaches to the final hours of her passing lasted 14 months and Josh and Lindsey lived with us all but 10 weeks of that time. Josh was amazing as he nurtured and took care of her. We shared the responsibilities of her care and having to make decisions to try to help her be more comfortable.

So now, by the middle of June 2011, just after her birthday, Lindsey was back in the hospital because of another severe seizure. After every seizure she would experience dysphasia which meant that she would be out of it for a couple of hours or up to a couple of days where she wouldn’t be able to swallow or eat, she would drool and not be able to talk. This time she wasn’t coming out of it and those functions were not returning. Early on the morning of June 15 a transport vehicle arrived taking her to the A.F. hospital. They were intending to put in a feeding tube so we could get her nourishment and administer the meds. She hadn’t been able to eat for several days.

It felt so dark and heavy at this point, like we had passed the point of no return.  Josh stayed with her in the hospital all weekend they had a little retreat just the two of them. Being at our home was very cramped for all of us and we were living in the upstairs of a three bedroom home, so I know they cherished their time together. That weekend I spent time making arrangements for a tea party.

A tea party for Lindsey.

Tuesday, August 21, 2012

Patterns of Love

I have not been able to write about Lindsey since Mother’s day.  Experiencing the pain of mother’s day and then facing her upcoming birthday on May 25th, I didn’t think I was going to get through those two weeks let alone write about them. During that time I began to understand that we were approaching the most difficult memories to cope with and I remembered that these dates marked the beginning of the end with Lindsey. I do appreciate your patience as I have been working through my grief.

It was my personal goal to blog about this first year with Lindsey being gone, as a way to document what happened and also to give my feelings a voice. So today being August 20, 2012 I plan to complete the experiences I still have planned to share in the next four days. On August 24, 2012 we will be gathering at the cemetery at 7:30 with friends and family to celebrate the life of Lindsey Robinson Karr, exactly 1 year from the day of her passing.

This blog entry will be in honor of Lindsey’s birthday and writing about what it feels like as a Mother to celebrate your child’s birth and not have him/her be present in their physical form.

l know there are many mothers who have gone before me and many mothers yet to come who have had to celebrate their child’s birthday without them. These mothers have lost children either at birth or because of war or through abortion, or adoption, or through accidents or illness. These mothers have lost their children to immediate death or death by suffering.

There are also mothers who have lost their children to abuse, to drugs, to disabilities, disappointments or to a diagnosis or a condition. Mothers have grieved for their children through the tragedy of divorce and blended families and abandonment and poverty. There are mother’s who have gone through the pain of infertility and not been able to have a child. To all the mothers who have experienced the loss of a child my heart aches with you. I know you have the capacity to tap into what that pain feels like because of your own experiences. I have truly appreciated those mothers who have been reading this blog who have felt my pain and can relate to my own personal loss.

Lindsey’s birthday triggered the loss of my baby. A mother’s fear is that her child will have to suffer pain and that as a mother she won’t be able to comfort her child. When our children are hurting there can be feelings of powerlessness for the mother in not being able to fix the child’s suffering. I am just barely being able to express what I have been learning through all this.

It seems simple but, I have been trying to wrap my heart around the fact that Lindsey isn’t suffering any more and that the suffering I am feeling is my own. My memories are so linked to her suffering that I forget that she is actually in a joyful place and that she isn’t suffering anymore. I try and try to celebrate for her and yet the pain in my heart is so real, it feels like it is going to rip me a part. I am suffering because I am still here and sometimes I can hardly breathe because we are a part. My grieving and all grieving is the process of “letting go” and I am finding that I have not been so good at this.

I have also come to understand my need to cling to her and her memories, her laugh, her voice, and how she smelled, and how she slept on her side and cling to her personal things, it makes me feel that I am with her again and if I close my eyes she will be in my arms, but it is all a game in my mind. This need to cling to her in every form is so deeply human that to not have any part of her with me makes me feel like I will die without her. It is so amazing to have the spiritual understanding and knowledge about life after death and yet experience the human bonding that takes place between a mother and a child on a physical level. I never realized the power of love between mother and child nor could I have ever imagined how strong that bonding connection can be.

To support the mind, heart and body in “letting go” of that bond is a process, and must take time because we must replace the physical bond now with a spiritual bond. That’s what I have been working on this past three months, connecting to Lindsey in a spiritual way.

This first year I have been working through post traumatic stress symptoms, letting go of old bonding patterns and creating new memories to connect with that can stimulate life.

The memories of Lindsey keep patterns of love alive even in the memory of the suffering. And when those patterns of love cannot be replaced with new ways to love her there is a great deal of pain. She is not there to nurture so the heart plays out all the ways that I nurtured her in her suffering and clings to that, thus the old patterns of bonding.

New ways of communicating with her and expressing love to her need to be created, so we had a birthday party for Lindsey. We were looking for a way to honor her and her birth into our family. We get to create new patterns of love. We wanted to bring what we loved about her into present time to help our hearts heal and to celebrate her release from this world. So we celebrated her birth into the spirit world.
Lindsey loved birthdays! Every year she celebrated all week long and hinted and teased about what she wanted and reminded us to make sure she got to be the “birthday girl” all week long.

She had a charming and giddy sense of humor and everyone knew she loved parties, she was the party!!  On May 25, 2010 her last birthday party with us here on earth, we took her in a wheelchair to a local park for a barbecue/picnic. We invited friends and family and fed the ducks at the pond, roasted marshmallows, sang while she played the guitar, and watched her blow out her candles. She was still witty, even clever in her conversation and with her jokes. She was mentally present even though her body showed signs of failing.

This year’s birthday party included friends and family gathered at our house in honor of Lindsey, a birthday cake, balloons, presents for her dearest friends and sisters (bracelets to all of them from Lindsey) laughing and telling stories about her and her antics. It was a great birthday party and a new way to honor her and remember her in a joyful state of light and peace without suffering.

Yes I am finding my way through all of these new experiences and being able to find joy and connection to Lindsey, even bonding to her with new patterns/experiences of love. And as each new experience brings a new way to connect to Lindsey my heart is made lighter and I can see her in her joy, her hand reaching for mine and the two of us together, not separated, but bonded and living love in a new way.  

Tuesday, May 22, 2012

Mother's Day

A few weeks before Mother’s  Day arrived I buried myself with work. I could tell I was avoiding the calendar. With mixed feelings I have faced this passing year with the understanding that it can be difficult to go through each event or holiday for the first time without your loved one.  After finally getting in touch with myself I realized that Mother’s Day could potentially be really hard for me.

Last year at this time, Lindsey had been eating only raw food for a couple of months and was still taking her medication for seizures and swelling in the brain. She seemed good. However, we could tell that she was getting weaker. She was doing meditations and Qi Gong and several other healing modalities. Her spirit was glowing and she radiated life and love. She would text throughout the day and call and leave funny messages on our phones. She mostly stayed in bed and talked with Jen, who was her care giver while the rest of us were at work or school.

Last Mother’s Day I remember being so grateful she was still with us. She was happy, talking a lot and not in pain. She was sharing with us her joy for simple things. We would all celebrate when she came downstairs to eat with us or hang out in the kitchen/family area. We felt close to her and cherished  tender moments when she would look into someone’s eyes while they were talking and reach out and take their hand and smile.

She celebrated visitors and made everyone so happy when they came to see her. She loved taking the sacrament each week because the Deacons and Priests from our church brought it to our home. Little things made Lindsey happy. Josh took her for rides up the canyon during the weekends, sometimes they would have a fire with his family. She would be so excited to go, even though we all knew that she would be exhausted afterwards.

Sometimes when it wasn’t too hot or too cold, I would help her downstairs and onto the back patio and she would lay in the sun with a blanket and dreamily drift to sleep while I painted. There was a peaceful quiet while we were there together. She would rest and we would talk about simple things and the purpose of her suffering and she would talk of getting better.

As Mother’s Day approached last year I knew in my heart that the only thing I wanted was to have Lindsey come to church with me, but, I had been hesitant to ask because, it was hard for her to get around. I remember praying silently that she would have the energy that day to come to church even though she hadn’t been able to go for several weeks.

Saturday night we talked and she said she really wanted to come and so we made as many arrangements as we could the night before, getting her showered and prepared to come with us the next day. Sunday morning we gently slipped on her dress and worked with what little hair she had. She even put a little make up on and we were on our way.

I remember sitting by her and trying to pretend that we were a normal family going to church on Mother’s day. I wanted so badly for us to be attending church on that beautiful spring day under such different circumstances. However, I was so grateful she was there. I remember her singing the hymns with me and how beautiful her voice was. She blended her voice with mine and it was mother and daughter singing praises to God for our friendship and companionship and offering our hearts in gratitude for the time we still had with each other.

I don’t remember the talks or what was spoken but, I do remember sitting by my beautiful daughter on Mother’s Day 2011 and wondering to myself if it would be her last. Little did I know it would be her last and final Mother’s Day. It actually was her very last Sunday that she attended church.
I remember how desperately Lindsey wanted to be a mom and how she would never really celebrate a mother’s day as a mother. We had many conversations about being a mother and talking about motherhood. She cried and cried about not being able to fulfill that one dream and now, because of the condition of her body she never would be able to have children. I tried the best I could to comfort her and did not understand myself why this was happening to her. 

Mother’s day is often a bitter sweet day. As mother’s we may feel celebrated and honored on one hand, and yet at the same time we may feel forgotten and unappreciated, and even depleted with the huge responsibilities of being a mother. There is a powerlessness that comes when we cannot comfort our children and when we face our humanness and our inability to ease our children’s pain.

My gift last Mother’s Day was being able to be with Lindsey and be in her presence and celebrate our relationship together in this world. I remember how happy I was that day, because all my children were with me.

This current Mother’s Day, as I sat in church with my oldest daughter and her family, which includes my two granddaughters, I felt sad but blessed, I celebrated motherhood with all its joy and all its heart ache with one child missing. Motherhood is both the fullness of joy and the pain of our children. I reaffirmed my commitment to being a mother and I knew I would never trade it for anything else. It is and has been the most painful and yet the most rewarding journey of my life.  I hope and pray and that I can continue to honor my own motherhood, and the motherhood in others around me in all of its simplicity and its glory.

I am so happy to know that motherhood is not just for this life only but extends into the next. Lindsey you will be a mother and that opportunity cannot be denied you. That is the promise of motherhood and the God that I know keeps his promises. Happy Mother’s Day Lindsey.  

Tuesday, April 10, 2012

A Place of Peace

On March 21, 2012, almost seven months to the day since her passing, Lindsey’s headstone was delivered and set at the graveside. I got to spend time with Josh there and it was so good to see him. We cleaned off the headstone, added fresh flowers to the vase, and gazed at her beautiful picture set in pink granite. It seemed like old times when we would work together taking care of Lindsey. With tears in our eyes, I thanked him for handling all the hard and painful things he did in Lindsey’s behalf. He truly was amazing with her through their married life and all of her illness. He was an amazing caretaker and he loved her so much.
Two weeks after she passed in August, he moved back to their town home in Saratoga Springs. And from that point forward it has been really different.
After Lindsey passed away I could go in and out of the room where they had lived. What was interesting was when Josh was still living there I didn’t have any problems going in and out of the room. Having him there made it seem like Lindsey was still here. The day he moved out I could not go back into the room where Lindsey died. I couldn’t bear seeing the emptiness and the barrenness. I avoided that space completely. Emotionally, I couldn’t bear the thought of Lindsey being gone, let alone realize we had lost Josh as well. It was interesting to watch myself and see how different things affected me in my grieving process.
Because of this, as well as many other triggers for me and the kids, Todd and I realized we couldn’t really stay in that home; so we moved Jan. 2, 2012. On the day we moved I went in and said goodbye to that empty room and sacred space where Lindsey had struggled to live and where she had peacefully passed on. I said goodbye to the space where Josh had so tenderly and lovingly cared for his sweetheart.
Grieving, to me, is letting go and facing every day without your loved one. It feels weird that they are not present, celebrating all the new things that are happening, and being a part of your life like they were before. Today is April 9th, 2012. It's Josh’s birthday - he is 28 years old. I think about his life and what he has already gone through during his short years. He stepped into our family and made such a huge difference in Lindsey’s life - and in ours.
I know that last year for Josh’s birthday, while Lindsey lay in bed, I helped her create and gather together fun ideas to use in celebrating. We had a lot of fun together thinking of different ways to honor him on his day.
I know that this year if she were here, she would sing a crazy Happy Birthday song to him and leave it on his voice mail. She would plan a special dinner and write him a tender note inside a sweet birthday card. She would express her love with her funny, sloppy handwriting that came about because of all the brain surgeries. She would find a funny t-shirt and make him wear it, like a superman shirt or something, and most of all she would hold his hand and gaze into his eyes and thank him for loving her even in this condition. She would thank him for feeding her and helping her with personal care She would thank him for talking to her in the middle of the night when she couldn't sleep and for rubbing her feet when she was uncomfortable or in pain.
And on the nights when she could sleep she would thank him for waking up over and over again to see if she was still breathing. She would thank him for standing by her to the end and listening as she took her last breath.
She would say "I love you Joshua Adam Karr. I shall never forget you and I will be by your side, even from the other side of the veil." She would say "we had our time together and its okay to move on, be happy, and when it comes time for you to have children I will be sending them from my tender arms to yours. I will be forever your friend, and your wife." For this year’s birthday present she would set Josh free of the pain of grief and loss so that he could move forward in this life the way he needs to.
Today we are also celebrating Josh’s engagement to his girl friend who is becoming his future wife. We know that he will always carry a tender place in his heart for Lindsey and our family. But we also know that he deserves to be with someone who is here and present and who can love him and take care of him. He deserves to have a family and have joy in his life again.
Healing the grief feels like we can celebrate life itself and the beautiful moments that come for loved ones in this world. I am starting to come out of some very painful learning. I feel at peace with Josh and our relationship and I am coming to a place of acceptance about Lindsey while understanding on a deep level that she is happy and free and living in a place of peace.

Monday, March 26, 2012

Reclaiming Fifteen Minutes

Hospice sent a little information packet reminding our family that we might be experiencing the second phase of grieving. They explained that this second phase of grief can happen about six months from the date of your loved one’s passing. I would say that many in our family are experiencing this just lately. Some of our family members are experiencing anger. Jamie has been really sad. I think that the experience at the temple really fits my entrance into the second phase of grieving.
I have had dear friends working with me and helping me through lots of different modalities for example: massage, cranial, homeopathy, flower essences, oils, supplements, and ESC plus, my own self processing. However, these modalities cannot take the pain away. I still have moments of deep sadness.
I did have an amazing “ah ah” the other day that I wanted to share. I was telling my friend that I feel like everything for me was moving in slow motion. I have been experiencing lapses of time where fifteen minutes are all of sudden gone. I was with Penny in Arizona in January and she experienced it with me several times. Anyway it has been annoying. Most of you know I have issues with being late most generally. However, over the years I have done a lot of processing about time, and my tardiness had greatly improved until the last several months. I was talking about this to my friend.
I said “I am always fifteen minutes behind.” As we worked on clearing it I could see myself connected to a strand of time that linked me to the day that Lindsey passed. I could see that part of me was clinging to her. It was like having the gas on and the breaks on at the same time. I knew I had to move forward without her and yet I couldn’t leave her behind. I felt like a rubber band being stretched from that day forward all the way to present time. The resistance had been getting harder and harder to balance.
I immediately saw me sitting by her bedside. My hand was touching her heart right by her breast. I could still feel the warmth of her body even though she had stopped breathing. The people in the room had filed out and the mortuary was there to take her body. I was asked to leave the room so that Josh could have a few minutes alone with her. I indicated that I wanted to go back in and be with her to say good bye. So I stepped out of the room. Josh must have finished saying goodbye to her and then the mortuary had gone into the room. I must not have been paying attention.
They proceeded to carry out her out on the stretcher. I was upset and at the time did not know what I needed therefore I could not language it. I have thought about this off and on since that day. But, I tried to tell myself that it was good enough and that I should just let all this go. As I started to process this I realized that I hadn’t taken my last few moments with her.
So six months later this realization hit me like a ton of bricks. I had only wanted a few more minutes with her, I wanted just fifteen more minutes with her so I could say good bye with just Todd and I and Lindsey. Somehow everything happened so fast and I never got that time.
I have continued to lose fifteen minutes over and over again. It has been a little bizarre. Thank goodness for the process because I knew immediately that I could reclaim those fifteen minutes by playing out in my mind what I had wanted to do on that day for exactly fifteen minutes. I knew that it could be just as real now, even if I hadn’t been connected or present enough to create that moment for myself on that day.
So I imagined my last fifteen minutes with Lindsey. I saw myself at the foot of her hospital bed. I imagined her feet which, I could see so clearly in my mind, it was if I were right there. The memory of that day has been etched in my mind forever. I saw how dry they were. I remembered how many times I had rubbed her feet with oils and lotion and given her a foot massage. I remembered how much she loved having her feet rubbed, especially when she was suffering or couldn’t sleep. I looked directly at her toes, in my mind, and I remembered how much she enjoyed having her toe nails painted. I imagined touching her feet for the last time and saying goodbye to her feet and toes.
In my mind I looked directly at her ankles and I could see the shape of her calves. She had grandma Mardee’s ankles and legs and they were beautiful. I remembered her knees and her thin thighs. I remembered that for a few weeks up to the day she passed, that she hadn’t been able to walk and she hadn’t gotten out of bed. I said goodbye to her legs that weren’t able to work anymore.
I remembered her tummy and how distended it was from the drugs and how sad it was to see it so misshapen from her beautiful figure. We had worked so hard to keep her colon clean and working over the years. And then to see all the effects of the drugs and what they were doing to her body, yet feeling torn because we knew we were using the drugs to keep her from suffering. She had been so thin after radiation and now her tummy wasn’t even her own. I thought of the times she had changed sizes because of drugs and treatments over the past 11 years.
I still recognized her tummy. I said goodbye.
I remembered her hands and her wedding ring. In spite of the steroids, her fingers remained slim. Lindsey had beautiful hands that I held so many times. In remembered her hands playing the piano, and the guitar. But I especially remembered her playing the violin. She played so beautifully. In my mind I said good bye to her hands.
I looked in my mind’s eye at the necklace she had been wearing now for several years. I remembered how many times I had helped her take that necklace off and put it back on again when she had MRI’s or other treatments plus, all the times I had helped her shower or bathe. I thought about all the times I had helped her dress and how much care we had taken for her body. I said good bye to the necklace.
I remembered her face swollen from steroids and her thinning hair and the few wisps she still had on top of her head. I could see the scar where she had had surgery three times and the dent it had left in her head. I said goodbye to the surgeries she had had over the last eleven years, the radiation treatments at age eighteen that had caused such severe burns. And then I remembered the day when I heard her scream as she stood in front of the mirror as long strands of hair fell out into the sink, I remembered us both crying and me helplessly trying to offer comfort. I said good bye to that place on top of her head where the hair never grew back.
And then I focused on her eyes, knowing that I would need to say goodbye. Even though they were closed that day and it seemed as if she were sleeping, I could remember her eyes. I remembered her long lashes and the shape of her eyes. I remembered how they would twinkle when she would laugh. I remembered their specific color and the blue green light that flickered inside letting us know she was in there. This memory wouldn’t be so important unless you had seen the last few weeks of her life where the light was dimmed and she didn’t seem to be present.
And then allowing the tears to flow in this visualization and having to accept one more time that she would never wake up and I would never see them open again. I said goodbye to her eyes.
I guess as a mother it was some need of mine to say goodbye to every part of her body so that I could understand that she wasn’t in her body and that she was leaving us. In my mind everything had happened so fast towards the end and as she passed I facilitated everyone else being able to say good-bye and I just wasn’t present enough on that day to facilitate my own closure.
And so in my visualization, just before I would let them come in to take my baby, I would see me laying down next to her and holding her one more time. And stroking her hair and her face and touching her hands. I had just needed a couple more minutes with Lindsey. . . fifteen more precious minutes. . . and yet I know in my heart that if they hadn’t come in and taken her I wouldn’t have been able to let her leave the house.
I know it happened exactly the way it needed to. After having gone through this fifteen minute visualization I felt so much better. I had gone back in time and reclaimed my fifteen minutes. Those minutes are mine now and I don’t have to experience them being taken from me ever again. Saying goodbye helps us come to closure. Time issues have to do with in completions.
So, here I am saying goodbye in the best way I know how. I think grieving is the process of saying goodbye over and over again. I think it takes us a long time to let go, I have only been able to let go fifteen minutes at a time.

Monday, March 12, 2012

The Power to Comfort Part II: Messages of Love

I appreciate everyone’s response to the last blog post "The Power to Comfort". It has been exciting to hear from all of you. It is really hard to share some of my personal experiences, but I know writing about them is helping me. So thank you for reading and listening to me as I share about my experience with Lindsey. Some days are just harder than others and I do have happy days, they are not all so sad.

However, like the last blog post, there are some experiences that are profound. I try to reach beyond my own need for privacy and pride and share what I have experienced, only to honor the presence of God in my life. It is when I see His hand, even His tender mercies, that I can move into greater acceptance that Lindsey has been called home.

It is in these tender moments that I can begin to make sense of all that has happened. When I see that He is aware of my grief, and He is offering comfort in the many ways that He has, I feel remembered, buoyed up, and I can feel His arms around me. I can hear Him whisper, reassuring me that she is okay and that there was some purpose in all the suffering that we witnessed. In some of my deepest grief, I have felt Lindsey’s presence with me.

I think the hardest thing is that she and I can’t talk, giggle or laugh together like we used to. My heart aches and I just want to hear her, touch her hand or be close to her and it is so hard to try to hear her voice through the silence of separation. I can only hear it every once in awhile now.

I have to reach beyond my capabilities to connect to her soul. Sometimes in my reaching and in my straining I connect to nothingness. Oh, cherish the times you have with your loved ones. Make your time with them count. Make sure you create meaningful memories, because when they are gone, all that you have left is the strain of your heart reaching out to hear their voice through the silence of the grave.

Lindsey left me many messages of love. As I am sorting through her things, I am finding old birthday cards from her to me and her handwriting brings tears to my eyes. We have pictures and photographs, certificates, and her diploma from BYU. There is her blanket, her clothes, her make-up, the dried flowers from her funeral, and her wedding dress. All these things remind me of her and send messages of love to me as I remember the essence of who she was here.

But, believe me, all these things are not my Lindsey. I do try to be at peace with her story and God’s plan that I know we all agreed to, but my heart just wants to hold my daughter again. I think in my mind just holding her one more time would help, and then I would be okay. And then I remember back to her sick body and how miserable she was and I think to myself "How can I be so selfish?" Surely she needed to be released. And then I move to some place inside me that is trying to accept that she couldn’t stay here anymore, which is in direct conflict with the emptiness in my heart that can never be filled. . .

When I am gone I want to leave something behind so that those who love me will not have to strain to remember my voice or feel my love for them. I want to leave as many messages of love as I can. One way I want to do this is by compiling stories of the "Power to Comfort". It will bring many voices together; we will all leave a strong message of love that stands as a witness of God and His power to comfort in small and simple things, even through the faith of mothers and daughters.

We can unite in telling our stories that God lives. In spite of our burdens, or sacrifices and hardships, we can bear witness that He is among us, that He has not forgotten or forsaken us, and that He has the power to comfort, even beyond the separation caused by death, through the power of sisterhood.

I am reaching out and encouraging you to record or write down an experience you have had either offering comfort to someone or having someone else offer comfort to you. If you are thinking about submitting a story please do it! I really believe it could bless the lives of many women. As you are considering what you might contribute, please know that the process of writing it down gives you an opportunity to heal and be reminded of the feelings of love and comfort you had during that experience. These books will then serve as an invitation to the rising generation to become a source of inspiration and comfort.

I plan to eventually compile three books. The first will include contemporary stories from mothers and grandmothers presently living. The second book will be our mothers’ and grandmothers’ stories that have been passed down to us. These stories will be what we remember as well as what we can gather from our family about their lives. And the third book will include the stories of our daughters and what life is like for them. I would like each book to have 30 – 50 stories.

Suggestions for stories:

The stories could be a short essay or vignette between 500 – 1500 words or a whole chapter. My blog length is 600 to approximately 1000 words. You can submit more than one story. You can decide if you would like to use your name, or another name.

June 1 will be the deadline to submit your stories for the first book. These are the stories from your own lives. This will be a project we can all be proud of. A portion of the proceeds will be used to reimburse the publishing costs and a portion donated towards scholarships - offering processes and emotional health education for women and children.

Retelling our stories gives us an opportunity to glean even greater treasures from our experiences and share those treasures with other sisters. Maybe in sharing our stories we can illuminate the future for the young girls coming after us. Maybe we will remind them about the value and virtue of womanhood and the importance of listening to intuition and the guidance we receive from God. This collection of women’s stories will be in celebration of the partnership between women and God and what can be created when we come together through "The Power to Comfort."