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Giving support.

Ella has been gone two and a half years. Being Ella’s mom was hard. There was lots of guilt, worry and stress on my part. However, there also was a lot of triumph, joy, and tons of love. Ella was my life, my job, my purpose for 11 years. Her death still brings me to my knees with grief at times. Healing is something that I actively work on every single day of my life. My husband and I have seen therapists together and apart and our marriage is strong at times and very rocky at times. 18 months ago, I gave birth to Emanuel Blessing. Our beautiful, healthy, happy baby boy. He is an amazing gift. We marvel at his developmental milestones. We treasure each moment we spend with him and refuse to take one moment for granted. We are grateful.

The months following Ella’s death we were blessed to have the support of many friends and family. People called, texted, sent notes and simply stopped by to check on us. We felt supported and remembered. As the months and years have gone by that support has all but stopped. With the exception of a few special people who make a point of mentioning Ella and ask how we are each time they see us, most, don’t bother to ask. Many people have completely disappeared from our lives. Perhaps folks feel that 2 1/2 years is long enough to mourn. Maybe people think that they will make us sad by mentioning Ella. Maybe seeing us makes them sad and people can’t handle it. Or maybe, they’ve just forgotten. Ella was our lives for 11 years. The thought of people forgetting her existence hurts so very deeply that it cuts to the raw pain that I felt as she died in my husband’s and my arms 2 1/2 short years ago.

Until recently, I tried reaching out to friends. I asked people to go for walks with me, out to lunch or have their children have playdates with my son. However, one can only be turned down so many times. Happily, because of my son, I’ve made a few new friends with moms who have children the same age as my son. So, I’ve given up on trying to make  connections with those who knew me when Ella was alive. Those friends that know what my husband and I went through with Ella and were witness to her sweet gentle nature. It’s pretty devastating to think that Ella, and myself and my husband’s pain can be forgotten in such a short period of time.

My propose in writing this is not to make anyone feel guilty or bad about themselves. My writing is to hopefully  shine a light on a group of parents who are sadly all too often forgotten. Parents of loss. We are very aware that time has moved on and people must get back to their lives. We too, have moved along with time. However, our small group has that one defining moment in time

when our children took their last breath. That moment will stop time in its tracks, bringing us back over and over again to witness.  These moments, our children and ourselves deserve to be remembered. So, if you have someone in your life who has lost a child, or has survived passed any loved one, make an effort. No matter how many years have passed, if you care, let them know. Even the smallest of gestures is greatly, greatly appreciated.

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)

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.”

opposite cars…

Once again Dave and I seem to be at opposite ends of the grieving roller coaster. The memories that trigger his grief bring me joy and the memories that trigger my grief he is indifferent to. This is causing a bit if tension between us and has me questioning my own process.

For example, last night as I was showering, I started thinking about holding Ella in our bedroom on the morning that she died. She was sleeping in our bed and woke up very upset. We gave her medication, I held her, calmed her down and she fell asleep. She never woke up after that. This memory is hard for me, as are many of the other memories from the last three days of her life. In fact, many of the memories of her last 6 weeks of life are difficult. We were in and out of the hospital, blood tests, transfusions, ultrasounds and no answers as to what was wrong with her. We watched her deteriorate before us, her body swelled from the fluid shifts, the weekly blood draws caused bruising all over her sweet little arms, she slept all of the time and slowly she stopped eating. I stepped out of the shower in tears. Dave was standing at the sink brushing his teeth. He asked what was wrong. I told him what I was thinking about and he shrugged his shoulders and said, “You just have to become neutral to those memories. That is what works for me.” OK, that sounds like a great idea, but a monumental task to me right now. His response pissed me off, I told him so and he apologized. I went to bed and had terrible dreams about the last few days of Ella’s life. I woke up shaken and still a little pissed at Dave.

This morning, we had a doctor’s appointment for the new baby. I had a blood glucose test and baby check up. Everything is great. The baby is developing and growing just like he should. We met with a new nurse midwife this morning. She was just lovely and made me feel very well cared for. However, she said to me, I know you and your family. She had seen us many times at our local beach paddle boarding with Ella. She has even read this blog. It was wonderful to recall the memories of hanging out at the beach with Ella. She loved the water and always had such fun surfing on her paddle board. I left the appointment feeling hopeful and happy to think of some very fun times with my sweet Ella. As Dave and I got in the car I looked over and Dave was crying. I was shocked and confused. My appointment went very well. The new baby is doing great and my pregnancy is progressing. We just met a new friend who had been touch and moved by our Ella. He should be happy. I asked what was wrong and he didn’t answer. I got pissed again and waited about 5 minutes for him to finally respond to my question. He said it was the memory of playing with Ella in the lake that made him sad. Thinking about all of the fun we had with Ella triggers his grief and makes him miss her terribly. WOW, we have totally opposite reactions to memories. How is it that happy, fun Ella memories bring me joy and brings Dave to tears? The sad tragic memories of Ella’s death brings me sadness and despair and Dave is neutral about these memories. I know neither of us is doing anything wrong. Grief is very personal, but it sure would be a lot easier if we were at least in the same car on the roller coaster. 480813_4459434086329_797624333_n 250209_2297039187808_2545111_n

forgiveness.

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.

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.

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.