I know I'm focusing on a lot of loss and negativity right now, and I know, I have to find some positive, to add some balance to my life. Maybe with balance I can move forward. I just feel I need to release the sadness and anger in order to make room for the joy and peace. There have been so many deep hard losses for me in the last few years. I just hope if I write it down, it will help me move from it, not be so wounded and stuck in place.
It is impossible to put words to the emotions that come with losing a child. They stem from way deep inside you. I guess the true opposite of the emotions you feel when you hold a child you've just given birth too.
I remember clearly the day she was born. I had a c - section.. it was late evening, almost an hour from midnight. I was excite to be having my second child. My first child was an easy child, bright, beautiful, calm, healthy. I had expectations that my second one would be much the same.
I recall holding her for the first time alone in my hospital room, getting ready to nurse her, and wondering why she was turning such a dark blue when she cried to be fed. My instinct told me not to fall too far in love with this child, as something tragic was afoot. I tried hard to shake this feeling, tell myself it was just the baby blues.. hormones. In the next few hours my fears were justified, this baby was very very ill. She was to be transferred to the Childrens Hospital as soon as arrangements could be made. While waiting for the ambulance and staff to be secured, the nurses on the floor, searched everywhere for a camera.. they wanted to take photos, incase this was the last I would see of my sweet second born. Finally minutes before the transfer, a camera was found and photos were taken, of her in my arms, her fathers arms, and the nurses. We didn't know at the time how much fight and determination was wrapped up in this small bundle. She spent her first month in hospital, having her first major heart surgery at 2 days old. She spent her first Christmas in hospital. Her childhood was not an easy one. There were constant medical appointments, invasive procedures, hospital stays, medications, side effects, 3 separate calls to her bedside to say our final goodbyes to our beautiful blond haired girl with the Betty Davis eyes. Each time, she summons the strength to pull forth and heal. Her will to live was astonishing. Her heart unfixable, still managing to sustain her. So many very tough memories for me here. Being at her bedside while they were doing chest compressions, and then defibulation. Being there with her to help her heal though the trauma her body had just endured. Weeks away from home, sleeping in waiting rooms, on couches, and chairs. Washing up in public washrooms, going without food, as the money had run out. Torn in my heart as I wanted to be home with my first born, who needed her Mom, who was having milestones of her own. I wanted to be there too.. I wanted to be at every birthday, every school concert, kiss every bump and scrape, and hugs and giggles goodnight. But there was only one of me, I had to stay with the one who was fighting for her life. During the times that were ordinary, I wanted her to have a "normal" life do normal things. Make messes and clean them up. I guess I was fooling myself as our life was anything but ordinary. The stress of choices we all made during these times, saw the end of my first marriage. During the second marriage, I gave birth to another adorable, bright, and somewhat healthy girl. Now I had two lovely girls I was missing and who were missing me, on the medical excursions I had with my second born. I was often judged by the choices I made. They were never the ones anyone else would have made..(or so they thought and voiced) but they were the only choices I knew how to make. I was young and scarred, and pushing myself past my limits over and over and over again. Pretending to the world I was strong, and could do normal things. My second marriage ended. By now, my eldest was in high school, so was the second, and the baby was just starting school. I was alone with 3 girls, no job, a mortgage, and mouths to feed. It was then that I meet, fell in love and married my current husband. He had 2 boys he was raising on his own. So we combined households and baggage. We sought family counseling from the beginning to help us create a healthy environment and loving home for us and our children. My 3 girls, and his 2 boys. His boys had mental health issues, that required attending to. By this time I had become a working Mom, but it soon became apparent, that with the blended family and all its baggage I would have to stay home and be the full time at home Mom. In the beginning this was not easy, not easy for any of us. But we pushed forward, did whatever we had to do to make it work, make a loving home for 5 kids. We had to change the recipe several times, not sure we ever got it right.. But we tried. Life seemed to be going along fine for us. Everyone seemingly to find their path. It was not long after we were married that the company my husband worked for was sold, and his job became redundant, now we were both unemployed with 4 kids still home. My second born, was having some very healthy and happy years. There was a spinal surgery, to straighten her spine, but that went well, she recovered quickly and it was not life threatening. She had started dating, and doing all the normal stuff young adults do. It was during this phase of our lives we sold our home and moved to PEI, to our dream home and opened our own business. Was only a year in our new home and community, that my second born, had found the love of her life and moved out to a new province to start a life of her own. I was so happy for her. The baby they thought would not make it 48 hours, the toddler, and youth who underwent 5 open heart surgeries and many medical procedures, some experimental, was a young adult, in love and making a home for her and her beau. It was during these next 10 years that her medical status took a dive. First incident, was her gallbladder... it took weeks to find a cardiac team that would remove it, and during that time she became addicted to pain killers. I was not with her during her surgery, but she came back home to recoup, and heal. Part of that process was detoxing from the pain killers. Once she was feeling better, she headed back to her home with her man. She made several visits over the course of those years. Most when she was quite ill. She had gone to Toronto to have testing done to see if she would qualify for a much needed new heart valve that could be inserted via catheterization instead of open heart. During one of the tests, she became quite ill, and came home to stay and be cared for by me. This was the first of several serious health crisis. Severe heart failure, complete kidney failure, reactions to medications, V-tech, V-fib insertion of Defib/pacemaker... seemingly one hospitalization after another. Her mental state was quite affected as well, she became depressed, and anxious. Once again the addiction to pain meds reared its ugly head. She was having pain from her spinal issues.. watching her decline physically and mentally was difficult on us all. Somewhere along this path her then common law husband, fell out of love and found her care too difficult to cope with... and this is how she came to live with us again.
She came to us at a very low time in my life, I was struggling with my own health issues, struggling with losing our home, business and way of life. ( I'm still struggling.) I had not much to offer her, but it was better than the alternative. I kept hoping that our lot would change and my offerings would be better for her. It never happened. We would often discuss different scenarios of how we could live if just this changed or that changed.. pipe dreams. I kept hoping her health would improve enough for her to become self sufficient. It didn't. Life can be cruel.
Thursday, January 22, 2015
Tuesday, January 20, 2015
I can't face grilled cheese sandwiches and tomato soup.
Realizing I have not added to this blog in a long time, I have decided I will once again give it a go. I'm so hoping by writing my thoughts and feelings down I will be able to come to terms with where I am, and who I am .. in the middle of this road called life.
Here it is Jan. 2015. I guess I shall start where I left off with my last blog entry, and continue on with the story, and explain why grilled cheese sandwiches and tomato soup, the mere thought of them, have me well up, with tears sliding down my face.
We are still residing in the "bat cave"... alot has happened since we moved back, "home".. Just as I am trying to adjust to the reality that we ( my husband and I) have lost our business, lifestyle, income, vehicles, and for me, self worth. Not here more than a week, still unpacking and trying to decide what I will keep and what I will store in my sisters barn. This place is very small, so I keep the basics. Re packing, or never unpacking some of the things I cherish.. they are just things I tell myself.. just things. We get a call....
My middle daughter, has been struggling, with serious health issues, and on top of that her relationship with her long time common law husband, has hit the skids. She has been hospitalized once again, and things are looking very precarious. The medical team that are dealing with her want to have a family meeting, because her "husband", no longer wants to bring her home, and if other arrangements can not be made she will be placed in a "facility"... Everyone turns to me... you're not working right now, maybe you could take her home with you. Promises were made that everyone would do a share in her care, it would not all fall on my shoulders. You see, it is not that I didn't want to care for my child.. I did, I loved her. We had been through so much together over the years with her heart issues and other health issues... we were a team. It is just that now my health was flagging, I had some stuff I was trying to deal with, so I would need help, so she could have the best life possible. So on the premise that I would have a ton of support, plans were made to set up all that would be needed to accommodate her, here in the "bat cave".. cramped quarters at best. The Dr.s involved felt she would be lucky to have another year to live. Palliative care teams were contacted, VON nurses were scheduled, a local GP was contacted and had agreed to take on her complicated case. Meetings with social service were had. She was on over $1000.00 a month in medications, that we could not afford. I was swimming in a very deep pool of anxiety and fear. I was not sure how I would keep my head above the water, let alone assist in keeping her's there with me.
Three years has past, and even though the promised support was not as forthcoming as promised, and there were many trials and tribulations, (many I will likely deal with later on) my gal lived passed her expected prognoses, even pushing into some phases of feeling good and doing better. It was three very hard years, hard for her, hard for me, hard for my husband. So much emotional turmoil and stress... many 911 calls, more hospital stays, hardships of not having the funds to make the treks back and forth to the hospital to visit with her. My heart ached at not being able to be the kind of support for her I was when I was younger and she was younger, and life was just easier. I struggled quietly with how much I felt I was failing her,failing myself and my husband. I also felt a sense of relief when she was in the hospital that I was getting a short break from the constant care and worry. There is almost nothing scarier than having to go into her room every morning to wake her, and not know if she would be breathing, if she would open her beautiful blue eyes and smile.. with a " morning, mama"... I was grateful for the break from the VON visits, and all that entailed, grateful we could eat what we wanted without feeling guilty. ( She was on a special diet, which we all followed.. it was just easier that way.) She and I struggled with our relationship, as it was hard to find a comfortable spot, where I was a caregiver, and her mother, and most times her only friend. I tried hard to treat her like an adult, encouraging her to make her own choices and decisions. It was not easy.. for either of us, as it was so easy to fall back into the role of her being the child and me being the Mom.. the one could protect her, love her and look after her. Resentment would poke through from both of us. But we both knew we were a team. "Birds on a wire".. we called ourselves. Because I could not be with her when she was hospitalized, we would talk daily, sometimes several times a day on the phone.
Six months ago, July 1st evening, she got up for a pee, and I glanced up at her.. ( I always was monitoring, ever the caretaker).. I knew she was very very ill... we called 911 for her for the last time. She was taken to the local hospital, and then sent off to her specialists in Halifax. Another call for a family meeting.. her care had reached the stage where I just could not do it anymore. I just was not strong enough to do it any more. She and I had many conversations, and then with the medical community on board, it was decided she would take up residence in the local hospital in a Palliative care room. It was felt she would not likely live more than 3 or 4 months, and there was nothing more medically that could be done to help her failing heart. On Nov. 18 th Becky took her last breath as I held her, comforted her, supported her as she died. Seeing the life leave those beautiful blue eyes, was the hardest thing I have ever done. I re live it every day.. I cry every day... I have cried every day since she had to move into the hospital on a permanent bases. I miss her, she supported me as much as I supported her. I miss those blue eyes, I miss her saying " its okay mama", when we both knew it wasn't.. but when she said it I could almost believe it. When ever she was very sick, her meal of choice, her comfort food, was grilled cheese sandwiches and Tomato soup. She ate it everyday in the hospital.
Such a complicated relationship between a mother and daughter, with such a complicated heart. I now have to redefine who I am, where I go from here and how. I feel too wounded, to move. Frozen on the spot. I'll delve into this more another time. No one sees my tears, I show now an empty smile.
Here it is Jan. 2015. I guess I shall start where I left off with my last blog entry, and continue on with the story, and explain why grilled cheese sandwiches and tomato soup, the mere thought of them, have me well up, with tears sliding down my face.
We are still residing in the "bat cave"... alot has happened since we moved back, "home".. Just as I am trying to adjust to the reality that we ( my husband and I) have lost our business, lifestyle, income, vehicles, and for me, self worth. Not here more than a week, still unpacking and trying to decide what I will keep and what I will store in my sisters barn. This place is very small, so I keep the basics. Re packing, or never unpacking some of the things I cherish.. they are just things I tell myself.. just things. We get a call....
My middle daughter, has been struggling, with serious health issues, and on top of that her relationship with her long time common law husband, has hit the skids. She has been hospitalized once again, and things are looking very precarious. The medical team that are dealing with her want to have a family meeting, because her "husband", no longer wants to bring her home, and if other arrangements can not be made she will be placed in a "facility"... Everyone turns to me... you're not working right now, maybe you could take her home with you. Promises were made that everyone would do a share in her care, it would not all fall on my shoulders. You see, it is not that I didn't want to care for my child.. I did, I loved her. We had been through so much together over the years with her heart issues and other health issues... we were a team. It is just that now my health was flagging, I had some stuff I was trying to deal with, so I would need help, so she could have the best life possible. So on the premise that I would have a ton of support, plans were made to set up all that would be needed to accommodate her, here in the "bat cave".. cramped quarters at best. The Dr.s involved felt she would be lucky to have another year to live. Palliative care teams were contacted, VON nurses were scheduled, a local GP was contacted and had agreed to take on her complicated case. Meetings with social service were had. She was on over $1000.00 a month in medications, that we could not afford. I was swimming in a very deep pool of anxiety and fear. I was not sure how I would keep my head above the water, let alone assist in keeping her's there with me.
Three years has past, and even though the promised support was not as forthcoming as promised, and there were many trials and tribulations, (many I will likely deal with later on) my gal lived passed her expected prognoses, even pushing into some phases of feeling good and doing better. It was three very hard years, hard for her, hard for me, hard for my husband. So much emotional turmoil and stress... many 911 calls, more hospital stays, hardships of not having the funds to make the treks back and forth to the hospital to visit with her. My heart ached at not being able to be the kind of support for her I was when I was younger and she was younger, and life was just easier. I struggled quietly with how much I felt I was failing her,failing myself and my husband. I also felt a sense of relief when she was in the hospital that I was getting a short break from the constant care and worry. There is almost nothing scarier than having to go into her room every morning to wake her, and not know if she would be breathing, if she would open her beautiful blue eyes and smile.. with a " morning, mama"... I was grateful for the break from the VON visits, and all that entailed, grateful we could eat what we wanted without feeling guilty. ( She was on a special diet, which we all followed.. it was just easier that way.) She and I struggled with our relationship, as it was hard to find a comfortable spot, where I was a caregiver, and her mother, and most times her only friend. I tried hard to treat her like an adult, encouraging her to make her own choices and decisions. It was not easy.. for either of us, as it was so easy to fall back into the role of her being the child and me being the Mom.. the one could protect her, love her and look after her. Resentment would poke through from both of us. But we both knew we were a team. "Birds on a wire".. we called ourselves. Because I could not be with her when she was hospitalized, we would talk daily, sometimes several times a day on the phone.
Six months ago, July 1st evening, she got up for a pee, and I glanced up at her.. ( I always was monitoring, ever the caretaker).. I knew she was very very ill... we called 911 for her for the last time. She was taken to the local hospital, and then sent off to her specialists in Halifax. Another call for a family meeting.. her care had reached the stage where I just could not do it anymore. I just was not strong enough to do it any more. She and I had many conversations, and then with the medical community on board, it was decided she would take up residence in the local hospital in a Palliative care room. It was felt she would not likely live more than 3 or 4 months, and there was nothing more medically that could be done to help her failing heart. On Nov. 18 th Becky took her last breath as I held her, comforted her, supported her as she died. Seeing the life leave those beautiful blue eyes, was the hardest thing I have ever done. I re live it every day.. I cry every day... I have cried every day since she had to move into the hospital on a permanent bases. I miss her, she supported me as much as I supported her. I miss those blue eyes, I miss her saying " its okay mama", when we both knew it wasn't.. but when she said it I could almost believe it. When ever she was very sick, her meal of choice, her comfort food, was grilled cheese sandwiches and Tomato soup. She ate it everyday in the hospital.
Such a complicated relationship between a mother and daughter, with such a complicated heart. I now have to redefine who I am, where I go from here and how. I feel too wounded, to move. Frozen on the spot. I'll delve into this more another time. No one sees my tears, I show now an empty smile.
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