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525111_10200227655236430_137490516_n Dave and I have gone back and forth experiencing grief. We take turns. I have to say seeing my husband breakdown has to be one of the hardest things for me. He is the most incredibly strong and caring person I have ever met. The care and sacrifices that he made in the 11 years Ella was alive are beyond belief. As Ella was dying he administered her final medications, sat up all night with her, comforted me and held her as she died. This weekend was hard for him, I have never seen him so sad. He just kept saying he missed his girl. Ella and Dave had a bond unlike anything I have ever seen. I feel lucky that I was witness to and included in such incredible love. Along this journey of loss, grief and healing it seems that when one of us is down the other is the rock. I was trying my hardest to be the rock this weekend. However, it’s very, very hard watch my sweet, wonderful, strong husband in pain. Perhaps, I think of him as superhuman.

A few months after Ella passed I was sitting with Dave and a few friends listening as Dave told the story of Ella’s last few days of life. As he got towards the end of the story, he started to recall when we carried Ella’s body out to the hearse. This was incredibly hard for both of us. I still wake up every night at 3 am thinking about it. I remember placing her wrapped body in the car, closing the door and watching the car drive away as I sank to my knees in tears. Dave picked me up and we held each other weeping. However, as I listened to Dave retell the story to our friends his version was very different. He said he wrapped her in the blanket and carried her out all by himself to the hearse as I watched from the porch. As he finished up I said, “Honey, I was next to you the whole time, I helped you carry her out and put her in the car. My sister and your Mom watched from the porch.” He was stunned, he sat quiet for a few moments finally saying, “That is not how I remember it, I think I left my body, it was far too painful.” We all have ways we deal with pain, I cry and sometimes scream openly. Dave is more reserved, quiet and very infrequently lets it out. Just when you think you have made progress and have healed a bit, wham, here come the holidays or a photo of her or you walk into her room. I try to end my blog posts with some sort of a resolution, but I haven’t been very successful with that lately. I am not sure if the loss of a dear child is ever something that is resolved. However, I am so very thankful that I have my husband with me in this difficult journey. He is amazing. I thank God everyday that he is my partner and that we were given the gift of Ella for 11 amazing years.

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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.”

Mondays…

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

IMG_3511If I said the 11 years of Ella’s life was an emotional roller coaster, then the last 4 days of her life was a high speed, upside down loop-de-loop that kept my stomach in knots for days. As we progressed toward our final decision to put Ella in hospice, the ups and downs of acceptance are like nothing I have ever experienced. Each up and down was felt so fully with all my being.

On Friday morning, Dave and I made the final decision to have Ella placed in hospice and bring her home to die.  This decision was made very early in the day, heart-wrentching and filled with tears. However, after we made the decision we waited. We waited for the paperwork to be filed. We waited while hospice care was set up and we were moved to a larger room on the children’s floor that had drinks and snacks set up on a table in the corner.  The larger room was to accommodate the many doctors and nurses that we had worked with over the years that came to visit us, say good bye to Ella, discuss our decision, their lack of understanding of why she was not recovering and that there really was no more that could be done for her. All of this took time, this time helped us come to relative terms with our choice. However, a few hours later the nurse entered the room and removed Ella from her IV fluids.  You begin to second guess your choice. Wow! This is it! It’s final! She is gong to die. Tears flowed, stomachs knotted and Dave and I discussed our decision once more. Then, you wait some more. We waited for a port to be placed in her leg so we could administer the final medications at home. We waited for the medications to be prescribed. Again, you have time to come to terms with your decision. We finally left the hospital around 4:00 on Friday afternoon. As I mentioned in my last post, this was horrible. Everyone on the children’s unit knew this was it. They would never see Ella again. The staff cried and we cried. As we emerged from the children’s floor, there was a buzz of activity all around us. People moving fast. People moving slow. People commenting on how sleepy Ella was (If you are ever in a hospital and feel like commenting on a sleeping child, don’t, please keep your thoughts to yourself.). People around us had no idea what we were doing and where we were going.  It was surreal. It was horrible and it was very sad. Then, you drive home, 4 pm on a Friday afternoon in traffic. You have time to process once more. Finally arriving at home, out of habit we began the process of opening cabinets to prepare her food. We stopped to realize that we will never feed her again. Again tears flow, my stomach knotted and deep, deep grief set in.

People began calling and showing up at our house to see Ella, lend support and bring food. It was busy that evening with lots of visitors. We told stories about Ella, hugged, laughed and cried. However, at night the grief was deep. The weather was beautiful the weekend Ella passed. We had the windows opened for the first time since winter. Our neighbor has a pond in his backyard and the bullfrogs that weekend were outrageously loud. Now, the sound of bullfrogs is a trigger of sadness that may take years to overcome. Dave and I took turns with Ella the first night. I listened to the frogs, sang Ella’s favorite songs, and told her over and over how much I loved her and how blessed I was to be her mom.  It was a long, long night. Saturday was very busy with friends stopping by. Once again we found it easy to laugh, cry and celebrate Ella’s life. Saturday night Dave and I sat up with Ella listening to the frogs until I finally suggested that we go to bed placing Ella between us.  As I mentioned in my last post, Ella woke for a little while on Sunday morning. I bathed her, changed her and got her back to sleep. She never woke again. Sunday was a little quieter then Saturday, but still many visitors. Our last visitor was at 4:00 and Ella died at 4:30. The moment of her death was quite magical and beautiful. Dave and I both knew at that time we did the right thing for Ella. However, once more you wait. I called Ella’s doctor who came over to our house right away to pronounce Ella’s death. We called the hospice nurse. She was about an hour away. So, we waited. I held Ella for a while but realized I couldn’t do it any longer. She was gone. My amazingly strong mother-in-law held Ella until Dave and I carried her to the hearse.  This part will have to be another post. It was intense. It was terrible. It was everything you could possible imagine and more.

I’ve had a few people say to me, “You had to know it was coming some day, right?” Yes, maybe I did, but that doesn’t make Ella’s death any easier. I loved her with all my heart, each moment of my life was consumed with Ella’s care. Anticipating her death was not something I did. We were living moment to moment. Right until the end, moment to moment. I am not sure if there was any other way to get though the experience. I suppose my grief will progress in the same way, moment to moment.

The Passing

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.

Well hello…

Our very sick girl.

Our very sick girl.

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Our very healthy girl.

Did you miss us?  We have had a hell of a summer. A new house, a huge renovation to make the home accessible for Ella, travel, a new school for Ella and a long fucking hospital stay for a very, very sick Ella. Here’s how it went down…We put our condo on the market thinking it might be a good idea to find a one story house to make things easier as Ella gets older. It sold in three days. Our fabulous real estate agent found us an adorable ranch on a sweet and very special street. The street however is outside of Ella’s school district.  Ella had to change schools this fall. A big deal? Yes, but with the help of Ella’s current school and the fabulous team at her new school it has been an easy and pleasant transition for us all.  So we moved in April to our new home. A 1950’s Mad Men style ranch that needed a lot of TLC. No worries we were up for and excited by the challenge and potential of the home. We lived in the house for three weeks, then left for Maryland the first week construction began. Our plan was to stay at my sister’s for three weeks and then the beach in Maryland for three weeks and come home to a brand new accessible home. Nope, not how it happened. As soon as we got to my sister’s, Ella started crying and didn’t stop crying all week. Something was very wrong, 5 days later something was very, very wrong. Dave and I decided at 1 am that we needed to get her back to Vermont and back to the docs that know her so well. It was the longest drive of our lives. I still have flashbacks of the drive that I will need to process and let go of soon. We got her to the doctors and they admitted us in the hospital right away. Ella had pneumonia, an aspiration pneumonia. We spent 5 days in the children’s hospital with Ella on heavy iv antibiotics, breathing treatments, deep lung suction and chest pt. Ella got better, or so it appeared. We were discharged and came home to a house that was well under construction. We were confined to one room in the back of the house and no bathroom. We spent three days there and then it became very clear that something was not right with Ella. She was still crying when she was awake and very hard to feed. By the third day she was not waking up. We took her back to the hospital and were admitted once more. Her electrolytes were off and sodium level was off the chart. She was put on an iv to correct her levels.  After two days on an iv, Ella became very edematous gaining 12 lbs in one day. Then, shit went down, her blood levels dropped. They dropped so low that Ella had to have a blood transfusion. The palliative care team came in to begin end of life planning with us. Yeah, it was that bad.  However, Ella, being Ella the great, started to improve. Her electrolytes levels started to normalize and blood levels stabilized. The only thing that was not improving was her sodium level, it remained high. After two weeks we were sent home to the construction site that was our home. Still confined to one room, this time we had a toilet. We stayed a week then decided to go to the beach in Maryland for a week. It was stressful, Ella was still sleeping a lot, very hard to feed and just not herself. After the week at the beach we came home, had Ella’s blood tested and her sodium level was still high. We decided to go back into the hospital and have her put on an IV to see if the level would come down. She was given fluids very slowly over three days. When she started to look swollen again we stopped the fluid. Her sodium level didn’t change, in fact, it went even higher. We were sent home to manage it on our own. This time we didn’t go home to a construction site. A very sweet friend had a friend who offered us their beautiful lakehouse for a week.  It was a wonderful retreat. Ella started to improve, but was still very hard to feed. We started to think about having a feeding tube placed in Ella’s belly. We met with the gastro doc and they put her on reflux meds until the feeding tube surgery could be scheduled. Ella immediately got better. We were able to feed her, get her properly hydrated and her sodium level began to normalize. We moved back into our house, still under construction, but we had a beautiful, accessible bathroom and our bedrooms. We spent the rest of the summer getting Ella well. She is better! Better then EVER! We had several follow up appointments this week and the doctors are all so thrilled with Ella’s recovery. Telling us to “Keep up what you are doing Mom and Dad.”

That was our summer. Now we are in our beautiful, mostly finished home, with a healthy, happy Ella and are ready for a quiet, lovely Vermont fall. My next post will be very soon and I will give you a tour of the house.

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.