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.