Feeds:
Posts
Comments

Archive for the ‘meditation’ Category

IMG_3515IMG_3511IMG_2924IMG_2691For the past two weeks I’ve been having nightmares about Ella, Dave and the baby I miscarried in June. I have never experienced nightmares this intense before. Certainly not dreams so vivid that I wake up in tears. The dreams vary, but mostly they have the same theme, abandonment.  Everyone leaves me alone. In the most recent dream, I was standing on a bridge and watched Ella, Dave and the baby jump off the bridge. I yelled, screamed and ran after them only to be left alone as they were swept away by the waters below. I woke up in tears. Dave woke up to my sobs and he comforted me. However, I was angry at him for leaving me alone. This is crazy, it was a dream. He is right there loving and supporting me.

I have been doing some research on dreams and grief and it’s not unusual to experience nightmares. Reliving the pain of death and loss on the astral plane. I have been talking about my dreams to anyone who will listen. Several of my friends who have recently been pregnant reminded me that during pregnancy your dreams can be very vivid as well. There just seem to be so many layers to grief and loss that it penetrates every aspect of my life. This morning I was cleaning out the cabinets in my kitchen, i came across a few bags of grains and can goods that were several years expired. As I move through this journey of grief, loss and rebirth I feel like I am searching the dark cabinets of my soul and releasing the expired can goods of my past. I think about the times that I was angry, sad and frustrated with Ella’s disability.  How unfair her life seemed to be at times and the pain it caused me as her Mom as I tried to fix everything and protect her. These are feelings that I can let go of now because as I reflect back on her short life, she was a happy, happy kid. She lived a rich, full 11 years. She imparted her sage-like wisdom on our family and changed the person that I am forever. She taught me the most important lesson of all to always, “Choose love at every turn. No matter what. No exceptions.”

Advertisements

Read Full Post »

385016_4737579919801_1728529784_nFor 11 years, I have been trying to find it in my heart to forgive the midwife and medical staff that were responsible for Ella’s birth injury causing her cerebral palsy and much heartache and pain. I have gone to therapy about it, silent mediation retreats, practiced many hours of yoga and repeated loving kindness mantras all in an attempt to forgive those responsible. Very often I feel as if I have been successful at forgiveness, however being pregnant and visiting the obstetrician has my resentment and fear raring it’s ugly head. It was just this past week that I realized that I was focusing my forgiveness on the wrong people. Yes, it sounds ideal to be able to forgive those responsible for Ella’s birth injury. To be able to think about her birth and not feel sad, scared, angry and helpless. However, it occurred to me that forgiving myself for having all of those unpleasant feelings is probably the likely first step to true forgiveness. I have been through a lot in the past 11 years since Ella’s birth. Unpleasant, yucky feelings are bound to surface when I reflect back on Ella’s tragic birth injury, the struggles in her life and her too soon death. Working on forgiving myself for having unpleasant feelings needs to come first. Sending myself loving kindness knowing that what I am feeling is natural. I am not a horrible, grudge holding person. I am human with the huge task of moving forward after several  tragic events in my life.

For many years whenever friends announced they were pregnant I would feel jealous and envious for their wonderful news. I felt like a spoiled child who locked herself in her room crying at how unfair life is. How is it that people can have two, three or even four healthy children and I can’t even have one? This, of course, made me feel like a horrible person who could not be joyful for my friend’s good news. Always, however, when I met the new baby my heart would melt and I would fall in love with the new bundle and feel nothing but joy for my friends. This is ok, it’s ok to feel this way, I forgive myself. I know my dear friends understand my pain they hold nothing against me and now so do I. Acknowledging these unpleasant feelings and giving them a name seems to be my first step in letting them go. Or perhaps not, acknowledging the feelings, recognizing that they are there and not letting them take over my life may also be the answer. Whatever the the road to forgiveness may be, I will continue move forward. I will offer myself forgiveness, recognizing that suffering is all part of the human experience. How it effects me is my choice.

Read Full Post »

1504541_10202816247229612_1982157284_nOver the past six weeks, I have been seeing a psychologist to help me work through some of the trauma of Ella’s birth injury, her death and the miscarriage in June. Going to the obstetrician for this pregnancy has caused me a lot of anxiety. The first few times that I went for a check up my blood pressure was very high. High blood pressure is very unusual for me and it occurred only when I went to the obstetrician. White coat syndrome, I suppose. So about six weeks ago I started seeing a psychologist who was recommended by a dear friend. In my sessions I have been doing Eye Movement Desensitization and Reprocessing Therapy (EMDR) http://www.emdr.com/general-information/what-is-emdr.html. My understanding is that EMDR is very good and effective for specific incidents of trauma, like Ella’s birth, Ella’s death and my miscarriage. The therapy, apparently, is not as effective for folks who have had long periods of trauma like a very traumatic childhood. Regardless, it has really helped me get a handle on my anxiety. My last two obstetrician appointments have gone well and my blood pressure has been normal. I still have much more work to do. The thought of returning to the hospital where Ella was treated to deliver this baby causes me some seriously strong negative emotions. 5 months to work on that, one step at a time.

At my last appointment the therapist and I talked about handling the holidays. She shared with me that she lost her daughter 8 years ago to a rare heart condition. (crazy huh?) She asked if she could share with me what she does to honor her daughter at this time of the year. Of course I was happy to hear about her tradition and learn from someone who has been in my shoes. She said that throughout her life, her daughter amassed a beautiful collection of earrings. Each year, since her daughter’s death, my therapist puts up her daughter’s Christmas stocking and buys a beautiful pair of earrings to put in her stocking. Then, my therapist borrows the earrings. This beautiful story felt like a huge breath of fresh air to me. Whimsical and fun, just like celebrating with Ella. Just this week I was digging through a cedar closet in the basement where I keep our christmas decorations and Ella’s christmas stocking fell out. I think Ella likes the idea, too. She did have a beautiful collections of bracelets and nail polish.

Read Full Post »

IMG_7853 IMG_7880 IMG_7887 IMG_7922It’s the time of the year that a lot of people express how thankful and grateful they are for people, animals, places and things in their lives. I think it’s great. Really, I do. It’s a lovely gesture to express gratitude. I am not sure why every time I see a Facebook post about someone being thankful or grateful, I kind of throw-up in my mouth a little bit. The past 6 1/2 months since Ella’s passing I have experienced a lot of different emotions–deep heart-breaking grief, jealousy, relief, guilt, nausea, isolation, loneliness, depression and many more. As we move closer to the holidays and times of family and thanksgiving instead of giving into the vile taste in my mouth, I’ve decided to join the grateful bandwagon. Here is one thing I’m grateful for.

This summer, two months after Ella died, Dave and I took an epic two month trip across the county and to Hawaii. We called it our Ellabration. We celebrated Ella’s life and our love for her, a healing journey. We took three weeks to travel from Vermont to San Francisco, flew to Kauai, Hawaii for two weeks, then took three weeks to travel back to Vermont. I am grateful for the amazing trip, for the time that Dave and I spent together and for the new life we created along the way. (I am now 4 months pregnant.) However, one of the special things about the trip was the many wonderful, interesting people we encountered along our way. As we traveled we visited many of the fabulous national parks we are so lucky to have in our country. One of our favorite places was Crater Lake National Park in eastern Oregon. The lake is the result of a volcanic eruption thousands of years ago that blew the top off the mountain. The crater that was left has filled with rain and snow over thousands of years. The blue-green color of the water is unlike anything I have ever seen, even in Hawaii. It’s a magical place. When we visited the park we stayed two nights in a rented Airbnb room in a very comfortable home in Klamath Falls, OR about 45 minutes from the park. Our lovely host/homeowner was a single woman who made sure we had everything we needed to make our stay as pleasant as possible. She opened her kitchen to us, inviting us to have anything we wanted from the well stocked fridge. She was, as I said before, just lovely. We had a instant connection. Her home was filled with angels and photos of her with Jon Bon Jovi. Yep, you read that right—angels and photos of her with Jon Bon Jovi. Dave and I knew this was going to be an amazing story. The three of us stood in her kitchen and we asked “Where did you get all of these amazing photos?” Most of them she had taken herself at shows all over the country. She is a huge fan. She preceded to tell us that she had gone through some very hard times in her life. As a result, she had a near death experience. Bon Jovi’s music gave her the strength to rise above her difficult situation and survive. The angels were part of her near death experience, heaven is filled with them she explained. Dave and I were floored and extremely grateful to her for sharing her intimate experience. We, of course, told her all about Ella, her passing and the purpose of our trip. Then, Dave and I got settled in our room and went to dinner. When we returned that evening she had gone to bed. However, she left Bon Jovi’s latest cd on our bed to listen to on our drive to Crater Lake in the morning. We listened. We cried. We were moved. I have always liked Jon Bon Jovi. I thought he was pretty cute when I was a teenager, but I guess I never really listened much passed “You Give Love a Bad Name” and “Wanted: Dead or Alive.” His music and lyrics are thoughtful, soulful, faithful, passionate and heartfelt. He spoke to the pain, grief and enormous love that we have for Ella. I am so thankful for a new appreciation of a very talented artist.

I am also grateful for the new cherished friend that Dave and I made on our Ellabration trip. A few days after we left her home, she sent me a very special, beautiful email. She described what she saw and experienced in heaven. She said God has a very special place for children. Ella is happy and very well taken care of. I have kept this email and have read it many, many times. #grateful.

Read Full Post »

IMG_6540

Bahamas Thanksgiving 2012

Over the past few months I have been trying to live with Ella’s words as my mantra,”Choose Love, at every turn. No matter what, no exceptions.” However over the past few days Sam Shepard’s words are over-riding Ella’s “Life’s a bitch with no prenup.”  Halloween was very difficult. I miss Ella every second and Halloween is just the beginning of the holiday season that Ella and I loved to celebrate. On Sunday, instead of sorting candy (trying not to eat it) and putting away Halloween decorations with Ella, I was preparing to speak about Ella at a memorial service.  The service was for all those who died in hospice care this past year. It was a beautiful service, although very sad, calm and dark. All of the things that we made sure Ella’s memorial services were not back in May. Dave and I spoke. I spoke about Ella, her loving nature and the positive impact she’s had in the community. Dave read one of her poems. We did it.  It was very hard, we choked back tears, but we got through it. Everyone in attendance was very touched and thankful to learn about our amazing girl and her incredible short life. However, for me it was a reminder that she is gone forever. I felt very, very alone in my grief. Silly because I know in my heart I’m not. I’ve heard it many times from support groups and others who have lost loved ones, that hardest time is 6 months to a year after you loose someone. The world moves on, many of the calls stop and people go back their busy lives. I sometimes feel forgotten and worst of all Ella feels forgotten.

Yesterday before the memorial service I decided I wasn’t going to smile all day. Life’s a bitch with no prenup was going to be my manta. I see many people all of the time who never ever seem to smile so I figured why can’t I be one of them today. I have a lot to not smile about– loosing Ella and having a miscarriage three weeks after she died. I failed miserably. I like smiling, smiling is my favorite ( to quote my favorite xmas movie to watch with Ella). Frowning isn’t really in my nature and Ella being such a powerful being has been re-enforcing her wise words in my head. “Choose love, at every turn. No matter what, no exceptions.” I will be ok, I always am. I will treat myself with loving kindness and take a lot of naps. Also, I just called a travel agent about a trip to the Caribbean Islands over the holidays. “Choose love, at every turn. No matter what, no exceptions.”  “Choose love, at every turn. No matter what, no exceptions.”  “Choose love, at every turn. No matter what, no exceptions.”

Read Full Post »

IMG_3511If I said the 11 years of Ella’s life was an emotional roller coaster, then the last 4 days of her life was a high speed, upside down loop-de-loop that kept my stomach in knots for days. As we progressed toward our final decision to put Ella in hospice, the ups and downs of acceptance are like nothing I have ever experienced. Each up and down was felt so fully with all my being.

On Friday morning, Dave and I made the final decision to have Ella placed in hospice and bring her home to die.  This decision was made very early in the day, heart-wrentching and filled with tears. However, after we made the decision we waited. We waited for the paperwork to be filed. We waited while hospice care was set up and we were moved to a larger room on the children’s floor that had drinks and snacks set up on a table in the corner.  The larger room was to accommodate the many doctors and nurses that we had worked with over the years that came to visit us, say good bye to Ella, discuss our decision, their lack of understanding of why she was not recovering and that there really was no more that could be done for her. All of this took time, this time helped us come to relative terms with our choice. However, a few hours later the nurse entered the room and removed Ella from her IV fluids.  You begin to second guess your choice. Wow! This is it! It’s final! She is gong to die. Tears flowed, stomachs knotted and Dave and I discussed our decision once more. Then, you wait some more. We waited for a port to be placed in her leg so we could administer the final medications at home. We waited for the medications to be prescribed. Again, you have time to come to terms with your decision. We finally left the hospital around 4:00 on Friday afternoon. As I mentioned in my last post, this was horrible. Everyone on the children’s unit knew this was it. They would never see Ella again. The staff cried and we cried. As we emerged from the children’s floor, there was a buzz of activity all around us. People moving fast. People moving slow. People commenting on how sleepy Ella was (If you are ever in a hospital and feel like commenting on a sleeping child, don’t, please keep your thoughts to yourself.). People around us had no idea what we were doing and where we were going.  It was surreal. It was horrible and it was very sad. Then, you drive home, 4 pm on a Friday afternoon in traffic. You have time to process once more. Finally arriving at home, out of habit we began the process of opening cabinets to prepare her food. We stopped to realize that we will never feed her again. Again tears flow, my stomach knotted and deep, deep grief set in.

People began calling and showing up at our house to see Ella, lend support and bring food. It was busy that evening with lots of visitors. We told stories about Ella, hugged, laughed and cried. However, at night the grief was deep. The weather was beautiful the weekend Ella passed. We had the windows opened for the first time since winter. Our neighbor has a pond in his backyard and the bullfrogs that weekend were outrageously loud. Now, the sound of bullfrogs is a trigger of sadness that may take years to overcome. Dave and I took turns with Ella the first night. I listened to the frogs, sang Ella’s favorite songs, and told her over and over how much I loved her and how blessed I was to be her mom.  It was a long, long night. Saturday was very busy with friends stopping by. Once again we found it easy to laugh, cry and celebrate Ella’s life. Saturday night Dave and I sat up with Ella listening to the frogs until I finally suggested that we go to bed placing Ella between us.  As I mentioned in my last post, Ella woke for a little while on Sunday morning. I bathed her, changed her and got her back to sleep. She never woke again. Sunday was a little quieter then Saturday, but still many visitors. Our last visitor was at 4:00 and Ella died at 4:30. The moment of her death was quite magical and beautiful. Dave and I both knew at that time we did the right thing for Ella. However, once more you wait. I called Ella’s doctor who came over to our house right away to pronounce Ella’s death. We called the hospice nurse. She was about an hour away. So, we waited. I held Ella for a while but realized I couldn’t do it any longer. She was gone. My amazingly strong mother-in-law held Ella until Dave and I carried her to the hearse.  This part will have to be another post. It was intense. It was terrible. It was everything you could possible imagine and more.

I’ve had a few people say to me, “You had to know it was coming some day, right?” Yes, maybe I did, but that doesn’t make Ella’s death any easier. I loved her with all my heart, each moment of my life was consumed with Ella’s care. Anticipating her death was not something I did. We were living moment to moment. Right until the end, moment to moment. I am not sure if there was any other way to get though the experience. I suppose my grief will progress in the same way, moment to moment.

Read Full Post »

birthdaycardMany great teaching masters say that when someone dies for whom you care very deeply all the love you gave them is returned to you upon their passing.

Ella died at 4:30 on a lovely Sunday afternoon, Mother’s day. She was ready. She was tired. She was peaceful. It was quite beautiful. She was in her father’s arms as I held her feet. My sister, my mother, my mother-in-law and a very good friend were with us in the living room. We were all talking about various things and I felt it; her soul depart.  Dave and I began crying and laughing, holding each other and Ella. Dave repeated over and over, “We did a good job.” My sister recalls me saying, “Did the past 11 years just happen or was that a dream?”

It’s unbelievable, unimaginable and no parent should ever have to go through losing a child.

Eight weeks before her death, Ella started having symptoms of severe reflux. We increased her medication. It didn’t work. We treated her for thrush. It didn’t help. We visited the doctor 4 times in two weeks. They checked her lungs to make sure she was not silently aspirating. Two weeks after the onset, I noticed her foot was swollen. When I brought this to the attention of her doctor, she had Ella’s blood tested. Her platelets were very low and she needed a blood transfusion ASAP. We were admitted into the hospital and just to be safe a chest X-ray was taken. She had pneumonia. She was put on a very high powered IV antibiotic and given a blood transfusion. We spent three days in the hospital. The pneumonia seemed to improve. However, her platelets began to drop again. She was still obviously very uncomfortable from the reflux and very hard to feed. We brought her home and continued the high powered antibiotic for the pneumonia. Her whole body began to swell from fluid shifts. We took her back to the hospital for another blood test and the platelets were again dangerously low. We were admitted to the hospital again for another transfusion. By this time the pediatric hematology oncology team became involved. Leukemia was possible;however, her blood tests were not showing any of the markers of the disease. To be 100% sure a surgical bone marrow biopsy was needed. No one wanted to put Ella through this very painful operation and with her respiratory status being compromised from the pneumonia the operation was not safe. This blood platelet drop cycle continued for 6 weeks with no improvement. 6 blood transfusions in 6 weeks. Her final visit to the hospital was supposed to be an outpatient blood transfusion. However, the day before the transfusion Ella fell asleep after lunch and she never woke up. We took her to the hospital early morning for the transfusion hoping the platelets would perk her up. Her vitals were bad, low heart rate and low oxygen sats. We were admitted, another chest x ray was taken and the pneumonia, which had been treated with 20 days of high powered antibiotics, was worse. We asked for palliative care. Several years ago we had hashed out an end of life plan for Ella just in case. Dave and I decided that we wanted a middle of the road approach—no intensive care, no ventilator. When we met with the palliative care doctor, it dawned on us that the past 6 weeks was middle of the road care. The next step was the ICU. It was time to let her go. She was tired. Her arms were bruised from the many blood test and transfusions. The pneumonia was antibiotic resistant and very aggressive. We decided we wanted hospice care at home. We wanted to bring her home to die.

Hospice arrangements were made and we brought her home on Friday afternoon. Walking out of the hospital was something I will never forget. As we wheeled Ella down the halls, life was going on all around us and we were taking our child home to die. At this point my mother and sister had arrived from Maryland and Dave’s mom was due the next day. At first, Dave was very resistant to having anyone visit. Thankfully he changed his mind because with that support Ella was in someone’s arms the entire three days she was in hospice. We were grateful for the visits and support from our community, family, and friends. Our home was overflowing with food, flowers and love.

The night before Ella passed she slept with Dave and me. She woke for a little bit that morning. I bathed her, changed her clothes and held her till she fell asleep. I knew that would be the day she would die.

Read Full Post »

Older Posts »