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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.

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Today I turn 40. Wow 40! It’s good, all good. My thirties were hard. Ella was born when I was 29, I spent the first 5 years of my thirties wallowing in and recovering from deep, dark postpartum depression. The second half of the decade I was figuring out how to be a Mom of a child with special needs. I can honestly say I am looking forward to the next ten years. I have been through hell, I survived, I am ok and now I am ready to be perfect.

When I look at Ella I see my beautiful, perfect child who is so brave and has overcome so much. I don’t see her crooked spine or her lack of speech or motor skills, I see my hope. She is a bright light, an inspiration. My reason for waking each morning. She is perfect.

When I look at my husband I see greying hair, IMG_7028lines around his eyes, a body that is a little less toned then it used to be and perfection. I see a man that supported me through a depression so deep that I couldn’t move for two years. I see a man that put his career on hold to care for Ella giving her a strong foundation of health and happiness. He is perfect.

When I look at my family, friends and strangers I see beauty. I see their perfection.

When I look at myself, I see a woman that has been through a lot. I have cried a lot, screamed a lot, cursed a lot, slept very little and laughed a fair amount too. However, it’s hard to see my own perfection. I notice the 5 lbs I wanted to lose before I turned 40 and the blemish on my forehead. This is not fair to myself, I deserve the same treatment that I give to others. So on my 40th I give myself the gift of perfection. I am perfect, just the way I am. I will spend the next ten years reminding myself of this everyday.

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IMG_6551This morning I taught the 9 am yoga class. Leaving my house early I drove past Ella’s school and began to feel a bit blue. I watched parents and their children walking to school hand in hand. Melancholy took over as I thought of Ella still in her bed knowing full well that Ella would not get to school until after noon. More depressing thoughts creeped into my mind thinking how I will never be able to walk hand in hand with Ella or watch her run up the school steps and so many other things that she will miss out on in life.  Finally, arriving at the yoga studio I unlocked the door and immediately put my ipod into the dock, Joni Mitchell began to sing. Busying myself with open details at the studio I put my blues on hold. I got dressed in my yoga costume (bikram yoga teacher language) and by the time I got to the front desk to greet the first student the song Chelsea Morning was playing. I stopped and listened as Joni invited me to Stay and talk in present tenses. My melancholy lifted, my heart filling with gratitude for all that I have to feel grateful for–Ella’s cuddles on the couch each night, her sweet little body falling asleep in my arms, and the purpose that is much bigger than myself that I have each morning when I get out of bed.

Thank you Joni Mitchell and Ella two strong incredible ladies, life is a lot sweeter because of you both.

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Electric Slide with Dad

Electric Slide with Dad on the Lido deck

Over the Thanksgiving holiday Dave, Ella and I went on a 7 day cruise to the Islands of the Bahamas with my parents, my sister and her family. I was looking forward to the trip, but we were still struggling with Ella’s reversed sleep pattern (going on for 7 weeks by this time) so packing and preparing for the trip added to my exhaustion (and short temper.) Anyone with kids can understand the extras needed when you go on vacation. When you have a kid with special needs, you can triple that load. The cruise line was very accommodating, letting us board the ship first, making and blending all of Ella’s food for the 7 days, bringing us a shower chair to bathe Ella and the staff was always kind and friendly as they helped us with the extras needed for her. However, the hallways of the ship were quite small and using Ella’s push chair was pretty impossible. We carried Ella all over the ship for the seven days. My biceps are a little bigger as a result! It was a good trip, great to be with family, lovely to see the stunning, tropical, aqua water of the Islands and ELLA SLEPT! Not only did she sleep, she slept well and deep and she switched her sleep pattern to sleeping at night!

The seas were very rough for most of our trip, Dave became seasick the first day (along with most of the other passengers on board) and had to take dramamine though out the trip. Ella, on the other hand, slept. She would fall asleep at night around 10 pm and sleep sometimes until 12 or 1 pm the next day UNINTERRUPTED. Amazing! Who knew? Putting her on a huge, loud, seasick inducing cruise ship was the cure for her sleep troubles. Ella has always slept well near the ocean. Put her on the ocean and she will sleep the whole time.

So what to do next so she will continue to sleep. Sell our house and buy a houseboat or a sailboat ? That sounds great to me, but Dave would not be able to live with us. 😦 So as soon as I came home, I started doing research on vibrating water beds. After sifting through some pretty racy websites, I settled on a vibrating massage pad for Ella’s bed. I ordered it and we tried it last night and she slept great! YEAH!

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Hanging on the Island with Mom

Although, living on a sailboat still has a great appeal to me. Dave could get used to the nausea right?

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Ella and me in a buddhist temple in Singapore. 

Recent conversations have left me feeling unsettled and frankly kind of shitty. Perhaps it’s a lack of articulation of my feelings or just not wanting to “go there” with folks. It’s not a new topic for me or I’m pretty sure for any other parent of a kid with a disability. Sometimes when I’m talking about Ella, people say things like, “It must be so awful for Ella not to be able to talk or walk or eat for herself or do anything for herself.” Or people will  give me a look of sadness and pity when I tell them about her. I usually just smile and move on.  However, sometimes I’m left feeling like shit and often like a failure as a Mom and a women. I do understand that this is not people’s intention and they’re trying to show concern. However, stating the obvious of Ella’s condition to me, Ella’s Mom of 9 years, is just hurtful. Our family has worked very hard to get past these incredible challenges, move on and live a very happy, fulfilled life. It wasn’t until recently that I realized that when people bring up these facts about Ella, it’s only awful for me not Ella. Ella doesn’t know a different way of living. She has adapted. She communicates in a non-traditional way. We help her get everywhere she wants to go and she is a very happy kid. As for me, I don’t really think about any of the things that Ella can’t do until someone brings them up and then I feel like shit. On most days, I am just doing what I need to do to help Ella. Enjoying the challenges that come with trying to get her involved in life and never thinking that Ella is missing out. Life is too busy and full to entertain such thoughts. Sometimes, I like to think of Ella as a zen master or a bodhisattva, who sits for many hours in meditation without moving. They don’t need food or water. Flies land on their noses and they resist swatting them away.  They’re not tempted by the frills and thrills of our physical world. They sit peacefully with a gentle smile on their face and teach us about patience, love and compassion. This is what I wish I could articulate about my sweet, enlightened Ella during each of these conversations that I frequently have (or perhaps cram down people’s throats). However, I always resist my urge to explain our lives or philosophies on life  (and my violent, unkind thoughts.) I take my lessons and lead from Ella and the enlightened teaching masters to act kindly, compassionately and to speak friendly, warmly, and gently and to talk only when necessary.

“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”  Gandhi

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Recently, a friend approached me about her 13 year old daughter who is interested in babysitting and spending some time with Ella. She feels that it would be great for her daughter and I couldn’t agree more. Ella will love it! She will surely enjoy hanging out with a cool 13 year old, plus I think Ella gets bored of Dave and me.

This reminded me of when I was a teenager in high school and I baby-sat for a little girl with cerebral palsy. Her mom, who was a nurse, used to drop her off at my house after I got home from school for a few hours until her dad picked her up. It was a wonderful experience for me, serendipitous indeed, and the little girl was a delight, so happy and filled with joy. Now, this was not a babysitting job that I went out seeking on my own. My mother, who owns and operates the local beauty shop in town, and several of her costumers volunteered me for the job. I remember feeling a little scared and overwhelmed the first day she came to my house. I wasn’t alone with her. My mom was home working in the beauty shop in the basement of our house. So if I needed anything I could ask my mom and any of her costumers. Most of the ladies were grandmothers who came in once a week to get their hair washed and set. However, when her mom brought her in she had a beaming smile and reached for me right away. She was not as impaired as Ella, but at the time she wasn’t walking. She had a bar in between her legs attached to her shoes. I assume now this was to help with scissoring of her legs. She also wasn’t talking, but it was never hard to figure out what she wanted. I quickly became very comfortable with her and looked forward to her weekly visits. After she left, I always felt a warmth in my heart that resonated for hours.

As I think back on this brief and wonderful experience, I feel so fortunate that those around me saw something in me and knew that I was right for the job. I firmly believe that everything happens for a reason. I remember after Ella was born, Dave and I were taken into a small room off of the NICU and told that Ella had severe brain damage. Her future looked very bleak, if she survived. I was crushed, devastated and depressed. However, there were brief moments of hope for me as I thought of the little girl that came into my life, for such a short time, bringing and sharing her joy and making a lasting impression.

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A few days ago Dave and I were talking about our nephew who is going to be a senior in high school this September. He was just a baby when Dave and I started dating, I was struck with how much time has passed since Dave and I got married and Ella came into our lives. Even though so much has happened in our lives (a major lawsuit, selling our house in Baltimore, buying another house and moving to Vermont, my long recovery from postpartum depression, stopping my dance career and then starting it up again, Dave getting a masters degree, and me graduating from Bikram Teacher Training), one thing has not changed, our devotion and constant care for Ella. Having a child like Ella with intense special needs is kind of like living in a time warp. Just like an infant, Ella needs 24 hour care. Time has just slipped by, as not much has changed in how we care for Ella since she was a baby. She needs to be fed, diapered, bathed, dressed, constant  positional changes and she still wakes several times a night. Coming home from 9 weeks away at Bikram Training and stepping back into my life, I’ve become highly aware of the intense work it is to care for Ella. As difficult as Training was at times, I was the only one I needed to care for.  Caring for Ella is just second nature for Dave and me.  Even though I wouldn’t change my life for anything, it can be difficult to see friend’s children and Ella’s cousins growing and thriving while I am still spoon feeding Ella at 9 years old. However, whenever I have negative thoughts I quickly become very grateful for the karma yoga (my life’s work) that has been placed in my lap. There is no need to search for my life’s purpose, I wake up to her beautiful soul every morning.

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