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Archive for the ‘adaptive equipment’ Category

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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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.

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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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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.

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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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My husband Dave will be inducted into his college athletic’s Hall of Fame this April. Dave was an outstanding college basketball player holding many of the college’s scoring records to this day. “With 1,833 points, David Clark is the leading scorer in Goucher’s men’s basketball history and led his team to the 1994-95 Capital Athletic Conference championship.” Goucher College Website

I never saw Dave play basketball in college, we met after undergrad when we were struggling modern dancers. Dave took up dance at Goucher to help him with his basketball game, he enjoyed dancing so much that after graduating he decided to try his luck as a professional dancer. We were dancing for The Doug Hamby Dance Company in Baltimore http://www.umbc.edu/dance/fulltime_faculty.html, I was teaching Dave a duet that was in our company’s repertory. During the duet we embraced for several seconds, sparks flew, my pulse race and my cheeks flushed, Dave felt it too. The rest is sweet, sweet history. I never knew how good of a basketball player Dave was, he never talked about it. After we married we attended an alumni game at Goucher and the program for the game had a quiz on it asking: Who held the records for the all-time leading scorer, all-time average points per game, all-time assist average and many more—All of the answers were Dave Clark. I leaned next to my friend who knew Dave in college and asked her about the quiz. She gave me a funny look saying, “Didn’t you know? That’s his retired jersey framed on the wall.”  I was floored and humbled.

Unfortunately, I will be unable to attend the induction ceremony because of the Bikram Teacher Training. I am sad about missing the ceremony, but I know that Dave will feel the love that day from his many former teammates that are attending, his family, my family and of course his # 1 fan Ella. Dave has encouraged and supported me in my decision to attend teacher training since I first mentioned it last summer. I would like to nominate Dave for my own Hall of Fame, the Hall of Fame for the most amazing, outstanding husband/partner, father and friend a girl could ask for. With love and gratitude my sweet.

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As I mentioned in my pervious post Defining your roles, (https://juliepeoplesclark.wordpress.com/2012/02/13/defining-your-roles/) Dave and I have established roles caring for Ella. One of my duties is bathing her, I am the only one who fits in the bathtub with Ella. Dave barely fits in the tub by himself. As I prepare to leave for 9 weeks to attend Bilram Teacher Training we needed to figure out a way for Dave to bath Ella. We have been thinking about having our bathroom adapted for her, but we live in a condo and major renovations are not a good idea for resale. We consulted with a physical therapist who suggested a few pieces of adaptive equipment for bathing. The suggestions were good, but they just don’t seem to work for Ella. Last week we spent some time in a medical store trouble shooting ideas to solve our problem. This is our solution, we bought a stool for Dave and Ella to sit on in the shower together and changed the shower head to a removable one with a shut off valve. So far it works like a charm, Ella loves the shower. YEA!! Now, How am I going to fix the problem of Dave dressing Ella in crazy, clashing outfits while I’m gone? How many times do I need to tell him that animal prints and stripes do not go together? JEEZ. 

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