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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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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.

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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.

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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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10 years, 10 changes.

IMG_5931As I was driving my minivan to Costco this morning I was thinking about all that has changed in my life in the past 10 years. You see this week 10 years ago I was just about two weeks over due with Ella. I was living in a fixer-upper duplex in the Roland Park neighborhood of Baltimore City. I drove a sporty Toyota, ran 5 miles a day, slept 10-12 hours a night, worked out at the gym daily and took yoga classes a few times a week to keep my body fit and beautiful, showered and washed my hair daily and wore make-up. I was cocky and confident that having a baby wasn’t going to change my lifestyle.

10 things that have changed in 10 years

1) My sleep patten. I never get more then 4 hours of uninterrupted sleep.

2) My ass. It’s lower, it’s wider, but it still looks pretty damn good. 🙂

3) I live in Vermont and I love the snow. I drive in the snow, I ski in the snow and I am sad when it melts. As a native Marylander this is big, snow in the south is a pain, everything shuts down and no one knows how to drive in it.

4) I never go to the gym. I lift, carry, hoist and squat with Ella daily.

5) I practice yoga 6-7 days a week. Yoga is how I care for myself–my body, mind and spirit. It’s the place where I am reminded to be kind to myself, laugh at myself and just breath. I even get to take a quick two minute shower after class.

6) I stopped trying to control things (well mostly, still emerging). As John Lennon wrote, “Life is what happens to you while you’re busy making other plans.”

7) I’ve stopped expecting people to act a certain way. I no longer expect people to move out of the way of Ella’s wheel chair, hold the door open for us or not park in the handicap parking space. Now when people do these things it’s a pleasant surprise.

8) I don’t drink anymore. While pregnant I dreamed of the glasses of wine I was missing. Then when Ella came home from the NICU I drank a lot of wine, too much wine, a bottle a night for 3 years. It wasn’t good, I was self medicating and feeding my depression. I quit drinking and have never looked back.

9) My face. I will quote the Indigo Girls here. “With every lesson learned a line upon your beautiful face.”

10) I am a mother, I am a good mother, I am a great mother. I am not perfect. I make a lot of mistakes. I get very angry. I feel like screaming a lot. I scream a lot. However, I can always calm down, get it together and collect myself before I care for Ella. I am a caregiver for a severely disabled child. I manage her daily and medical care. At ten years old I still change her diapers, bath her, dress her, spoon feed her and rock her to sleep at night. I wonder it that will ever change.

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OMG.

I’m having one of those days, or maybe I should say one of those weeks. Ella has been going through a seizure cycle, Dave started his student teaching and we’ve had company for over a week. This morning as I was taking yoga class I was distracted, couldn’t focus and felt like I had to go to the bathroom the whole time. UGH! My teacher even commented on my wondering eyes during class, she said it was very out of character for me. My laser beam focus was way off. I couldn’t help thinking of a student in the adaptive dance class I teach http://www.vsavt.org/education/can-do-arts/, an older lady with developmental disabilities. She doesn’t say much, but every once in a while when the class is quiet and concentrating she will yell out, “Oh My God!” It makes all of us laugh in the class, lightens the mood and usually is said at the very perfect time. Well this morning her voice was in my head: as I cleaned the snow off my windshield without my gloves, “Oh My God!”, as I came to a very small traffic jam, “Oh My God!”, discovering that I left my yoga top at home, “Oh My God!”, having to set myself up directly behind someone in yoga class leaving me little room, “Oh My God!”, standing head to knee, “Oh My God!”, triangle, “Oh My God!”, knocking over my water bottle, “Oh My God!”,  Oops,IMG_6550 I’m doing the wrong posture, “Oh My God!”,  backbends, “Oh My God!”, and savasana, “Oh My God!” Each time my student’s voice came into my head I lightened up and laughed to and at myself. I guess sometimes the most perfect words can come from unlikely sources.

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