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Recently, I’ve accepted more invitations to social outings, parties and engaging more in my community. Until now, I’ve been very happy to stay home so I don’t have to answer questions about my past. For the sake of my 3 year old son, Manny, I’ve been making an effort to be more social so he has the opportunity to meet young friends. Almost always, when I met someone new I’m asked the question “Is he your only child?” I know the question is coming and usually can gage how I’m going to answer well before I’m asked. Basically, there are two types of reactions I receive when I tell people about the death of my young daughter Ella. People who want to hear more, ask questions and stay by my side as I elaborate and, more often, people who don’t say a word, give a blank stare and find the quickest exit to get as far away from me as possible. When I encounter either of these reactions I find myself trying to make my audience feel better, more at ease in my presence with my pain. I create a happy ending to my story, wrapping it up, making my pain easier to handle. When asked the pressing question, “Is he your only child?,” I’ve at times answered, “Yes, he is my only child.” However, this response makes me feel extremely sick to my stomach. I’m betraying Ella and her memory. Nonetheless, when I answer “No, I have a daughter who died 4 years ago,” and I receive one of the reactions I described I find the need to “fix” their reaction. I emphasize Ella’s disability, somehow making it “ok” that she died because she was physically and mentally impaired. Wrapping the story up with my surprise pregnancy and happy ending of having a healthy rainbow baby a year after Ella died. This response also feels so wrong, as If I’m not honoring my own pain and Ella’s very important memory. In the ridiculous effort to make people feel better I end up making myself feel much, much worse. After repeating this situation many times over the past 4 years since Ella’s passing I’ve come to the conclusion that this, is not my problem. My responsibility doesn’t lie in people’s reaction to my story. It’s simply, not my problem, Trying to fix my pain for the sake of others is silly. Life is messy, difficult, and tragic at times, this is reality, life, in it’s most beautiful form.  I’ve worked very hard to get to the place where I am in my journey of grief. Trying to make strangers feel better about my pain in mere seconds is not my responsibility . I understand, my story is tragic, most people couldn’t even imagine raising a extremely medically fragile child who ultimately passes away at the young age of 11. They shouldn’t have to, it’s pretty horrible. However, it’s my story and if you ask about my history I will freely share the whole, ugly, painful, beautiful truth with you. Unapologetically. 33110026_10216902927027803_8192670681423413248_n

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Benches

When I’m out hiking or walking I’ve made a hobby of always sitting on benches. Benches that are placed along hiking or walking trails. Benches were placed in certain spots for a reason and figuring out why has become a fun game for me. Most of the time, they have the best views, sometimes they’re put at the top of a steep incline for a rest, sometimes they are dedicated to someone and have lovely messages and sometimes they’re  just there. I started this hobby many years ago when Ella was alive and I’d take her hiking or walking. Because of Ella’s body structure and spasticity she was unable to sit. Ella was extremely stiff and sitting was impossible for her. So I carried her all the time. On walks and hikes we took a lot of breaks to rest. It wasn’t easy carrying her, she weighed about 30 lbs and couldn’t assist in the carry because she couldn’t hold on. Consequently, when hiking or walking with Ella, I took every opportunity to sit and rest for a moment.  For many years, I resented this, I wasn’t getting places fast enough, I didn’t have time to sit, I wasn’t getting a workout. However, as I aged and realized I couldn’t change my situation, my outlook softened I began to truly enjoy this precious time of just sitting with Ella in my arms and enjoying the view.

After Ella died in 2014 Dave and I took three months to travel across the country and flew to Hawaii for a few weeks. We visited many of the amazing national parks across the US and we did a lot of hiking. I made it a point to sit on every bench offered as a homage to Ella, a quiet moment to be closer to her. It became a joke between Dave and me. Hiking times had to always allot extra minutes for my bench sitting. 

Since the arrival of spring in Vermont, Manny and I have been taking every opportunity we can to get out and hike. Manny is independent and wants to walk on his own, no stroller or backpack for him. He wants to hike “like a big guy.” So our hikes together take a substantial amount of time and include many detours to look at bugs, trees, feathers or pick up interesting sticks. I’ve never spoken or explained to Manny my bench sitting hobby, but he is very aware of me taking time to sit whenever the opportunity is presented. Just this past weekend Dave, Manny and I were on a hike. When we reached the top of a steep hill there was a bench. Before I could make my way to it Manny said, “Look Mommy a bench, we need to sit.” I nodded and silently thought, yes, yes we do.  We sat, had a snack, debated monster trucks and watched 3 millipedes crawling on a rock. These incredible moments of calm, peace and exploration are presented to us so many times throughout every day. However, I dare say that if I had not learned from Ella’s necessity to slow down and loiter a bit in her very deliberate daily care I’d most likely still be rushing to get somewhere. I’d be worried about getting my workout and missing the opportunity to be quiet, to be still. I would completely miss these beautiful moments, beautiful views and beautiful messages—a moment to teach Manny to take in the view and get closer to the sweet nature of his amazing big sister. 

 

Spring

Ahh..spring. The sounds, smells and anxiety attacks of spring. Yep, anxiety attacks. I experience pretty extreme anxiety this time of the year brought on by the many sounds and smells of spring. Everything about spring brings me back to 4 years ago at this very time of year when we were making the agonizing decision to place Ella in hospice care. Driving past the hospital where, four years ago, we spent most of the month of April and the beginning of May, I experience anxiety. Shortness of breath and a racing heart are my norm as I see the carefree college students move around the hospital campus in shorts, t-shirts and sunglasses ever though the temperature is barely above 50 degrees. Just last week as I drove by the hospital on my way to teach a class at the university my car fuel gage beeped indicating I was low on gas. The sound was the same pitch and tone of Ella’s heart rate and oxygen saturation monitor alarms that went off every few minutes when Ella was admitted in hospital. I began crying and shaking uncontrollably, I had to sit in my car for several minutes composing myself before teaching class. Those alarms and bells were awful and made me jump with fear and worry every time they went off in the hospital. However, I’ll never forget the agonizing, deafening silence when they were turned off after our hospice decision was made.  

Then, there’s the frogs. Or, as I refer to them, the fucking frogs. The fucking frogs are back. My neighbor has a small backyard pond with a beautiful gentle water fall. It’s quite lovely, relaxing, I enjoy sitting in the backyard listening to the water flow. But the frogs, the frogs stir up grief, sadness and anxiety in me. 

We left the hospital on Friday May 9, 2014, bringing Ella home for the last time. The last time, this fact could not weigh more heavy on us. We’d brought Ella home from the hospital so many times over the past few months before she passed, always with hope that we wouldn’t have to return because she’d recovered. She never did, we returned to the hospital over and over and over the last two months of her life. However, we would not return to the hospital this time, never with Ella, ever again. I will never forget the sad faces and tears of the nurses and staff that we became so close to over the months as we carried Ella out of the pediatric wing for the very last time. They knew, we would never return. As I stood with Ella at the front entrance of the hospital waiting for Dave to pick us up, I couldn’t make eye contact with anyone. I feared that someone would comment to me about the string of beautiful weather we were finally experiencing in sun starved Vermont. We arrived home late in the afternoon and shortly after a hospice nurse arrived to deliver the end of life drugs that we would administer to Ella every few hours. The nurse also helped us contact a local mortician who would come to collect Ella’s body after she died. The nurse left, leaving her contact information and a promise to return early the next morning and late in the evening until Ella passed. After her departure our friends, family and those who love us dearly began to arrive with food, love and beautiful stories of how our beloved Ella touched their lives. This constant flow of divine love lasted for hours. My cousin was the last to leave close to midnight that first evening. Then, we were alone. Dave, Ella, me and the frogs. As I mentioned, we were have a long stretch of beautiful weather and because our home was filled with so many people, we had our windows open. The frogs were loud. So, so very loud. Dave and I took turns sitting up with Ella her last two nights. It was lonely, desperately lonely. Ella was sleeping most of the time. Every three hours we administered her end of life drugs. We watched her breath, her move and waited. We waited for her very last breath, for her to die. The whole evening our only companion was the frogs. The frogs waited too. This went on for three days and two nights. Our house filled each morning and all day long with loved ones bringing many gifts. Late in the evening we were left alone. Left alone with our thoughts, our fears, our grief, our sadness and the fucking frogs. 

Ella died late on Sunday afternoon, 4 pm. It was Mother’s day. The day was beautiful, clear, bright and warm. Just like the previous days we were blessed with visits from love ones, however about an half hour before Ella passed our home cleared out. Everyone was gone, it was quiet, Ella was in Dave’s arm as I held her feet and she took her very last breath. She was gone. Again, the silence was deafening, agony. I don’t remember the frogs that night, I think I finally slept. In fact, I don’t remember hearing the frogs at all for the rest to that spring. Perhaps, they were in mourning for what they had witnessed. Perhaps, I became deaf to any sounds other then my own tears and deep grief. Perhaps, I was finally sleeping after two months. I’m not sure. However, in early May, every year since Ella died, they return. I’ve yet to make peace with these amphibians. Their spring chorus still brings on deep seeded traumatic stress in me. I still refer to them as the fucking frogs. However, I’ve noticed how each year as I utter the obscenity my heart feels a little lighter and I chuckle a little as I say it. Perhaps my heart is filling with the beautiful memories associated with Ella and her passing; the many loved ones who shared time with us during those last few days of Ella’s life; the touching stories many told and continue to tell about our sweet girl; the special, silent, bittersweet time her father and I spent with her during those lonely dark evenings or the very tender, miraculous moment that Ella made her graceful transition. Again, I’m not sure. Perhaps they return with their song every year to soften my heart and remind me of the miracle and love of Ella, and until I no longer call them fucking frogs.  13339584_10209877287071195_9018081056874771717_n

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