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Labyrinth

A few weeks ago, I spent the weekend at Kripalu Center for Yoga and Health in Western Massachusetts. I attended a women’s retreat on transformational movement, dance and ritual. It was a fabulous weekend filled with female strength, love, powerful rituals and  lots of free, abandon, luscious dance. I ended the weekend feeling inspired and full of creative ideas to incorporate into my own life and work—writing, teaching and dancing. I been to Kripalu 4 times, but this is the first time I’ve been back in 10 years. The first few visits were right after Ella was born and a few years after we moved to Vermont. Just like this most recent visit, I remember spending early morning hours wondering around the grounds of the beautiful campus. Exploring the many temples and places of spirit and worship that are dotted throughout the grounds. One place in particular that I’ve explored each visit is the labyrinth garden placed on top of a hill looking out over the Berkshire mountains.  The labyrinth’s irregular network of paths lead to a center altar where a childlike angel sits on top. It’s beautiful, people leave coins, notes, flowers, rocks and jewelry. However, in the many times that I been to the labyrinth this is the first time that I’ve been to and seen the center altar. Prior to my most recent visit I’ve stepped into and began to walk the labyrinth only to step out and bail before I finish. As I finished the labyrinth to completion this time, both in and out, I sat on a bench to reflect on why I’d never been able to finish before. As I meditated on this thought for some time, I had feelings of panic, guilt, fear and loads of insecurities flood over me. I remembered on my pervious labyrinth walks feeling as if I was being watched and judged, which I wasn’t, no one was around. As I sat for several more minutes in silence I began to realize that the feelings of panic, guilt, fear and insecurity were the exact feelings that I experienced on a daily basis as Ella’s Mom. I wanted out of the situation, I knew the fear, panic, judgement and emotional and physical pain that was all part of being Ella’s Mom as she grew and eventually passed away. 

All my life, I’ve bailed on things when they’ve gotten to difficult—school, auditions, relationships, anything that exposed my insecurities, venerability or weaknesses. I couldn’t bail on Ella, I was stuck. I suppose I could have, but my conscience and guilt wouldn’t let me. Albeit, there were times when bailing on my family was at the forefront of my mind. Frequently, while driving my car by myself I thought, if I just keep going no one will find me, or worse, if I crash into that tree I will be dead.  My guilt and sense of obligation made me stay. Understanding, patience, confidence  and total unconditional love is what I learned and gained from being Ella’s Mom. Ella taught me to stay, finish what I’ve started, to love with my whole heart and believe in myself and the choices I made and make. 

So this time, I finished the labyrinth in and out with confidence, power and pleasure, free from guilt, panic, judgement and fear. At the very center of my labyrinth journey was my sweet angel who greeted me with the message of “Good Job Mom, now, keep going. There’s much more for you to do in this life.” And right there on that bench out in the wide-open, I broke my meditation, opened my eyes and began to laugh loudly, hysterically, not caring one bit who saw or judged my actions.julie124.jpg

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The Lotus

The lotus is a breathtaking flower that rises above the mucky water, mud and shit below to shine it’s beauty to the world. The past 15 years since Ella was born I’ve had few and far between “lotus” moments. Moments where I’ve risen above the muck to truly shine. As a Mother of a special needs, medically fragile child, instead of rising above the muck its more like I’ve plowed right through it to get what needs to be done, done. Shining my light took a backseat to the needs of my family.  I have taken care of myself throughout the years, but it felt more like survival rather then nurturing a precious light within. I have been living, and thriving in fight or flight mode for years, ready to put out what every medical fire Ella needed. 

When my son Manny turned 3, I embarked on potty training. I prepared myself for the worst and it turned out to be pretty easy. He trained in 3 days, no problem. About a month later, I was cleaning out Manny’s closet and saw the diapers, pull-ups and swimming diapers that we no longer need. I stood in front of them for a few minutes coming to the realization that I’ve been changing diapers for 15 years, and just like that, I’m done. Ella was never toilet trained, she wore diapers till the day she passed away at the age of 11. I felt a huge weight leave my shoulders and I began to cry, shake and feel the permission to release the literal shit and metaphorical muck of the past. Just like the lotus, I have the chance rise above the muck, free to shine my light, my beauty and my sparkle.  

Not long after this I met Anne, an Ayurvedic lifestyle consultant, reiki practitioner and amazing angel. I asked Anne to help me sparkle again. With her guidance I dove head first into a journey of self care. I began a practice of dinacharya, an Ayurvedic tradition of daily self care. Each morning, I wake at 5:30, sit in meditation for 30 minutes, pray, give thanks and practice gentle yoga postures. Then I move to the bathroom, scrap my tongue with a small metal scraper to remove toxins built up overnight,  gargle with sesame oil and wash my face and eyes with rosewater. I drink a glass of warm water with lemon and finish up in the bathroom. After this I move to the living room and bring out essential oils that Anne introduced me to. I take time to smell the oils and decide what will work for me on that day. I put some oil in a diffuser, on my wrists, the top of my head, the bottoms of my feet and over my heart. By this time my family is awake and we start our day. Most days are busy and full, however I’ve felt centered, calm and fully present because of my daily self care routine. I’ve been mindful of my thoughts and feelings and what I put in my body and what I put out into the world. 

Several months after beginning my self care practice I decided to hire someone to clean our house once a month. The women I hired is an incredible dynamo, she not only cleans houses, she is training to be a birth doula, is a single mom to 2 boys (one who has special needs) and a sky diver! After we spoke for a while learning about each other, she said, “You should come sky diving with me!” I immediately began to sweat. NEVER! The idea of ski diving terrifies me to no end. However, her offer did get me thinking about fear. What is it to live without fear, to be fearless? Is it about pushing your limits? My limits have been pushed far, far beyond most as I cared for Ella and her many, many needs for 11 years. By making the impossible choice to place her in hospice care when doctors couldn’t help her anymore and have her die in my arms, is, I dare say, as fearless as humanly possible. There is no need to push my limits any further. However, there is a need to let go of the grief, the bitterness, the sadness, the depression, the anger and the sorrow that I’ve been holding onto for years. The shit, the muck, the mud that I let define me, be a part of my being and rule my life. Letting go of this huge part of my life is fearless. Taking the time to care for myself and breaking the pattern that I take a backseat to others is brave. When something is such a huge part of your life letting it go is difficult, heartbreaking, even if it’s something that is breaking you in every way. That is fearless. I’ve learned a lot from the shit, the muck and am grateful for the gifts that it has given me, but I’m fearless enough to let go and let myself soar. Ready to release the muck, rise above and shine my beautiful sparkling light to the world. julie146

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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. 

 

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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

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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.

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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

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