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Archive for the ‘inclusion’ Category

Last week, Dave and I took a Babymoon trip to Florida. We flew into Miami stayed for a few days in South Beach then drove south into the Keys for two days. We had a lovely time. The weather couldn’t have been better, just what we needed to get through the rest of this crazy cold winter in Vermont. The last time we were in Florida was when we took Ella to swim with dolphins in Key Largo at Island Dolphin Care. Island Dolphin Care is a magical place where dolphin therapy brings children with special needs, children at risk, wounded veterans and their families joy and the discovery of new abilities. http://www.islanddolphincare.org

Ella was on our minds the whole trip. Driving down into the Keys, Dave and I both cried off and on thinking about the beautiful experience Island Dolphin Care provided for our family. Ella loved the dolphins, the warm water and the fabulous staff that worked with her for the 5 day camp. We had planned to take Ella back last year but she died two weeks before our travel plans. Our drive was emotional, cleansing and connected us to some very sweet memories with our beloved daughter.

One thing that Dave and I noticed during our trip was the surprising number of children with disabilities that we encountered in restaurants, on the beaches and shopping in South Beach and Key West. Every time I saw a family with a kid with a disability my heart and soul warmed knowing the amazing opportunity to learn unconditional love that special needs families have. I watched a handsome teenage boy play with his autistic sister in the waves on South Beach. I watched a beautiful young girl in a wheel chair with her Mom and Dad at dinner. She reminded me so much of Ella with her radiant smile and graceful slow repetitive movements. I watched my beautiful husband help a young disabled boy and his helper down the stairs to the breakfast table in our hotel. Each time I had one of these enchanted encounters I felt thankful for Ella and all she taught me about love, life and what is truly important. However, these meetings also made me miss her terribly.

I also started thinking about an experience I had twelve years ago when I was pregnant with Ella.  I was just about 9 months and Dave and I were walking together in a mall. We saw a family with a young boy who was very severely disabled. I remember stopping in my tracks as an overwhelming fear washed over me. I was thinking, What if I have a child who is severely disabled? How would I cope? Does life go on? Oh, if I could only have a conversation with my 29 year old self. I would explain that having a child with severe disabilities doesn’t ruin your life, it gives your life a much greater purpose. A dear friend gave me a quote a few months after Ella passed, I believe it speaks to the message that I am trying to convey with this post.

“The most beautiful people we have known are those who have known defeat, known suffering, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and understanding of life that fills them with compassion, gentleness and a deep loving concern, Beautiful people do not just happen.” Elisabeth Kubler-Ross11021113_10206190381380857_7022708703687442587_nDay 3 Water (23)

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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.”

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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.

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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.

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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.

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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.”

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Mondays are my time to cry. Every Monday morning, since Ella passed, I wake up early and cry. I look at the empty spot on the couch, Ella’s spot, and cry. I remember waking up the first Monday morning Ella was gone. How empty the house felt and I cry. I go to yoga class and dear friends ask how I am and I cry. I walk past her room and I cry. I see her coat still hanging in the closet and I  cry. I go for a walk to clear my head and I cry. I try to work, write and I cry. I feel lonely and I cry. I watch something on the Ellen Show and I cry.  I look at our Halloween decorations. I don’t want to put them up, I cry. I won’t be making her Halloween costume this year, I cry. I think about all we have been through. The tough decisions we had to make and I cry. I think about the pain that Ella was in and how sick she was and I cry. I don’t cry all day long. Just periodically throughout day. This seems to happen only on Mondays. There are other times during the week that I cry but the bulk of my crying is on Mondays.  Is it the realization that I will live another week without Ella in my life? Is it that once again I have to find things to do and places to go to occupy the time that used to be for Ella? Is it seeing the rest of the world going on all around me with everyone back to their lives and I am still without Ella? This is not unusual. I have a friend who lost her husband in December and she told me her day to cry is Friday. I also know that this is ok. It’s normal to cry. Ella will be gone 5 months on October 11. It is unbelievable. At times, it feels like yesterday and at other times it feels like another lifetime all together. Another lifetime of hard, hard labor. I told my doctor that I was tired of being an example for others for how to overcome impossible situations. Tired of being an inspiration. My doctor told me I was allowed to feel this way and that the rest of my life could be easy. That sounds great, easy. Easy makes me cry. Crying for wanting easy, for not wanting the hard job of caring for Ella. UGH, I suppose it’s a cycle. Tomorrow is Tuesday. good photos 037

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