After we brought Brian home from the Veteran's Hospital in LA, as you can imagine there was a lot of adjustments made for his care. We were living in a tri-level home at that time. We still had one son living at home, he was a senior in high school. Our daughter and her son were living in an apartment complex at that specific time, but all that would soon change within a month or so.
I adapted our living room into Brian's room complete with all the heath care necessities provided by the VA. He had a hospital bed, oxygen tanks with service provided for fill-ups weekly, we had a hydraulic roll around lift, a shower gurney which I kept in the garage, I had a set of ramps to get Brian to other levels of the house and outside. I purchased a computer desk to put his respiratory equipment on - suction machine, breathing treatment machine and supplies. This room was a completely active at home hospital looking room, with all the accoutrement's of a home surrounding, including the activity of a family. This is a condensed frame of the environment but in time we knew this wouldn't work for the long term. For Brian's sake, if there were an emergency and I were alone, it would be almost next to impossible for me to get him out of the house quickly, so our search began for a one level home suitable for his care - that was the primary objective.
About a month or so after bring Brian home, our daughter became mentally ill. I don't know how that happens, I still to this day do not understand what triggered her illness. The event of one day was the beginning of still another challenge for Bob and I. Our daughter appeared at our doorstep with our grandson, she said she couldn't take care of him any longer and she left. There was a taxi at the end of our street and she was getting in it when I stepped outside to see our grandson only three and a half at the time watching his mom go off - it was so very sad. The challenges from that time was enormous - caring for a total care person and raising another child. Only by the grace of God did we succeed - whether it was with total mental capacity on our part is to be questionable, but we did the best we could all the way through.
I'm fast forwarding to the time after we purchased the home which would be Brian's final home. My husband drove around neighborhood after neighborhood looking for the perfect place to bring Brian to and for our grandson too. The first time he passed this home he knew it was the right place. He drove me to see it, then we contacted the real estate agent and asked to see the interior. PERFECT! The minute we stepped into the home we knew it was right - I knew I had a lot of work to get it ready for Brian, but it was a do-able project which would come together so well, although, not without a lot of work and time. There were many many positive elements of this home, convenience, room, adaptability for handicap accessories, grounds space, and best of all a wonderful school system for our grandson. By this time, we had become his legal guardians and we were finally successful in persuading our daughter to enter the mental hospital. It's been a long difficult road for my daughter - many ups and downs.
One of the additions we made to the property was the addition of a jacuzzi. The room we prepared for Brian had originally been the den with a fireplace. I had the contractor cover up the wall and made a large area into a bathroom with a shower large enough for me to effectually roll Brian's shower gurney into so I could give him a shower weekly, he would get a bed bath every day, but he loved the shower. There were heaters in the ceiling, I had a shower sprayer on a long hose so I could be sure all parts of his body was washed and rinse. Mind you, as I haven't said much about it, Brian was 6 ft 4 - long and leggy. He had always been very athletic, a runner and tennis player. He loved running marathons in Germany while serving in the Army. So, getting him in and out to anything whether his wheelchair or the gurney was no short order easy job. The lift I had was wonderful and made my job easier. But, I made it my job to get him out of bed everyday - he would spent time with his family no matter where we were. Our home was an open floor plan, so he was easy to monitor no matter where he was in his wheelchair. I also had a intercom system put in and monitors which went to my office in the back of the house and our bedroom.
His room was on the backside of our home. I had double doors to replace the sliding glass door so it would be easy to get him out of the house, it would be easy if he was in his gurney, or in his bed and there was an emergency, it was convenient for the paramedics and emergency squad to reach his room - this happened often as he had several seizures which were bad and he had to be transported to the hospital. It was a simple and quick pathway to Brian's room from the driveway, I knew in his case, speed would be his salvation and I would work to make it the easiest for everyone involved with Brian's care.
Brian's room was on the patio side. Bob completely screened in the patio and included a pad which we had a jacuzzi put in for therapy for Brian. The VA would provide us with a lift to get him in and out of the jacuzzi. Having the screened in porch would allow me to open the doors for fresh air for Brian and for Brian to hear the birds singing. We have lots of trees around our house, so lots of birds. Brian couldn't see but his hearing was keen. He couldn't speak, but he could snort - he would communicate sometimes, especially during the quiet times when he wasn't sure anyone was around or a huge snort when he was very unhappy with whatever what happening to him - a story for another time. With brain damage patience, there is no one blueprint of conditions. Brian's condition was unique.
Bob was working on the jacuzzi yesterday and was brought to write about that today. We shut the jacuzzi down after Brian died - it was expensive to run, our kids weren't thrifty or thoughtful about how they let it run - the electric bill was so costly. But, since we were getting things ready to sell this house, it was appropriate to get the jacuzzi in order as well. It is so nice to look from what was Brian's room out to the patio and the jacuzzi. He was only in it one time - Bob got scared that Brian would fall into the water and drown, so we never got him in it. But, that one time, I knew Brian enjoyed being in the warm water. The expression on his face was so peaceful and he look contented. I regret that Bob was fearful and we couldn't have found another means of having a routine for Brian.
This is only one of many experiences with Brian. I wouldn't have changed my decision to bring him home to care for him even in retrospect of all I went through and what I've given up. It has been difficult, however, getting back to some type of semblance of what was a normal life before Brian - and it was never be again. Because when you lose a child, a part of you dies and never grows back.
Our grandson had difficulties in his life, but I loved his so much and "fought" for his needs when necessary. He met many challenges in life as he had to face many situation other children do not. He has grown up to be a wonderful grandson. He is very loving. He is so much fun and I love having him around. He is in the Army right now but will be home soon and I can't wait.
We never know what life has in store for us. I certainly do not want to know what my future has in store for me. I couldn't have imagined I would have or could have accomplished what I did to care for Brian and raise our grandson at the same time considering all that was required of me. I am not the same person today as I was in 1989 when I received the call from Germany. I can only repeat the old adage - God only gives us what we can handle.
Wednesday, April 28, 2010
Sunday, April 11, 2010
New Day
We made it through another year anniversary of our loss. It may seem redundant to someone who has never lost a child and they may question why all the emotion. I do have a deep empty void for my parent who I lost in the 80s and my brother a few years ago. There's no easy path in life when someone we love dies. Losing a child, the child you carried inside your body and gave birth to means losing a part of yourself. I've heard people say they never expect their child to die before them. In the course of life, it is the old ones who go first, but in reality that's not the way it is.
In my life, I've had children who when they were babies were in the hospital with serious illnesses and needles stick in their beautiful fragile bodies. It is so tearful and hurtful to experience a baby ill in the hospital. The experience of a full grown son is no less painful.
In my life, I've had children who when they were babies were in the hospital with serious illnesses and needles stick in their beautiful fragile bodies. It is so tearful and hurtful to experience a baby ill in the hospital. The experience of a full grown son is no less painful.
Monday, April 5, 2010
April 5th - 10 years ago he left us
Ten years, it is such a long time ago. With the passing of time, I can't remember this whole day with the exception of the evening when he left us. He had been so sick and his lungs were giving out.
I am watching two hummingbirds right now outside my window. The wind is blowing with a fervor. One hummer is holding on to a branch in the tree with all his might and the other is attempting to feed from the feeder near my window. They try to hold on and then fly away.
Brian wasn't expected to live and we were constantly advised by some physicians - not our regular one - to let him go. We felt as long as there was life and he could breathe on his own we would fight to keep him alive - I had hope beyond the planet Mars that he would recover. As this day ten years ago progressed, we had to face the fact his life was ending.
Like the hummingbirds struggling for nourishment , we struggled all our might to help Brian, to give him all the needs we knew he needed to help him. He was a very strong person and he outlasted the predictions of the professionals but it wasn't to be that he would go on in life.
We have heard of so many weird head injury accidents where the patients have recuperate and some who die. It is what it is. I have avoided the "why me" syndrome because there are too many other things that could be. We are given what we are given each in our world to cope with - sometimes we can handle it, and other times we fail, but "why me" is weakness - things can always be worse. I know it comes down to how I perceive it.
I was angry with God for many years - I didn't stop believing, but I stopped praying. I knew others prayed for me, and I was glad. I gave Brian and my life up to God to take care of us. God gave me great strength to accomplish for Brian and my family what I did during those days. But through all the hope and trust I had, I was sure God would save Bri. I know I should appreciate the time I had with Brian - and really I do. I never knew in a million years that I could do what I did for Brian and my family then. I won no awards or written up in a newspaper article, but caring for my son through horrible ordeals gave me great satisfactions. Love. The depth of a mother's love for her children is unmeasured. I guess that's the answer. We can accomplish great things because of love.
I won't forget Brian's last breathe as he laid in his bed in his room here at home. He was peaceful. God, I miss him so much. I wouldn't want him back in that condition, but I miss him. He was a sweet child.
I am watching two hummingbirds right now outside my window. The wind is blowing with a fervor. One hummer is holding on to a branch in the tree with all his might and the other is attempting to feed from the feeder near my window. They try to hold on and then fly away.
Brian wasn't expected to live and we were constantly advised by some physicians - not our regular one - to let him go. We felt as long as there was life and he could breathe on his own we would fight to keep him alive - I had hope beyond the planet Mars that he would recover. As this day ten years ago progressed, we had to face the fact his life was ending.
Like the hummingbirds struggling for nourishment , we struggled all our might to help Brian, to give him all the needs we knew he needed to help him. He was a very strong person and he outlasted the predictions of the professionals but it wasn't to be that he would go on in life.
We have heard of so many weird head injury accidents where the patients have recuperate and some who die. It is what it is. I have avoided the "why me" syndrome because there are too many other things that could be. We are given what we are given each in our world to cope with - sometimes we can handle it, and other times we fail, but "why me" is weakness - things can always be worse. I know it comes down to how I perceive it.
I was angry with God for many years - I didn't stop believing, but I stopped praying. I knew others prayed for me, and I was glad. I gave Brian and my life up to God to take care of us. God gave me great strength to accomplish for Brian and my family what I did during those days. But through all the hope and trust I had, I was sure God would save Bri. I know I should appreciate the time I had with Brian - and really I do. I never knew in a million years that I could do what I did for Brian and my family then. I won no awards or written up in a newspaper article, but caring for my son through horrible ordeals gave me great satisfactions. Love. The depth of a mother's love for her children is unmeasured. I guess that's the answer. We can accomplish great things because of love.
I won't forget Brian's last breathe as he laid in his bed in his room here at home. He was peaceful. God, I miss him so much. I wouldn't want him back in that condition, but I miss him. He was a sweet child.
Monday, March 29, 2010
Time
I created this particular blog to share how our life evolved around Brian and the care we gave him during the time he survived in a bed unable to do anything for himself. We are coming upon the tenth anniversary of the day he left this earth, so it goes without saying he does come to mind more frequently and with more sadness and remorse for our emptiness.
Regrets are probably the most emotion that is activated at any given time. I was Brian's primary caretaker and with that comes the stark reality of responsibility and must know what to do when, having everything just so so. In those days, I was on top of things, today I am a weakling. When he died I lost it all, because I gave it all to him. Oh, I guess that's an overstatement because I still had to raise Tom, our grandson, and he was a handful then. I'll never understand how I did it all. God was good to me, I know, but today, I feel let down.
One regret I have had was when I knew he was leaving us, I didn't take him in my arms and hold him tight. It would have been a difficult physical thing to do but I should have done it. I held his hand and touched his face and all those little things, but I regret not holding him in my arms one last time. Brian was a huggie person, a really good hugger too.
Now I know why I don't write in this place more often, it is very sensitive for me - very emotional to dig so deep in my soul of memories to bring him back. I have to make an effort to write about this wonderful man and what he meant to me and our family. His accident and how we took care of him touched many people's life. He didn't have a big funeral, only a few people came, but during the time of his life and after his accident in the Army hospital, VA hospital, and then home, we came in contact with many people who were touched. I know in this life it's not how much money we have or the size of our homes or what we have in them, but how we treat our fellow man and give glory to God in that way. If there is nothing else in my life, through it all the way I cared for Brian, my love and devotion raising Tom our grandson, and cherishing my husband will be my legacy.
Regrets are probably the most emotion that is activated at any given time. I was Brian's primary caretaker and with that comes the stark reality of responsibility and must know what to do when, having everything just so so. In those days, I was on top of things, today I am a weakling. When he died I lost it all, because I gave it all to him. Oh, I guess that's an overstatement because I still had to raise Tom, our grandson, and he was a handful then. I'll never understand how I did it all. God was good to me, I know, but today, I feel let down.
One regret I have had was when I knew he was leaving us, I didn't take him in my arms and hold him tight. It would have been a difficult physical thing to do but I should have done it. I held his hand and touched his face and all those little things, but I regret not holding him in my arms one last time. Brian was a huggie person, a really good hugger too.
Now I know why I don't write in this place more often, it is very sensitive for me - very emotional to dig so deep in my soul of memories to bring him back. I have to make an effort to write about this wonderful man and what he meant to me and our family. His accident and how we took care of him touched many people's life. He didn't have a big funeral, only a few people came, but during the time of his life and after his accident in the Army hospital, VA hospital, and then home, we came in contact with many people who were touched. I know in this life it's not how much money we have or the size of our homes or what we have in them, but how we treat our fellow man and give glory to God in that way. If there is nothing else in my life, through it all the way I cared for Brian, my love and devotion raising Tom our grandson, and cherishing my husband will be my legacy.
Saturday, August 15, 2009
18 years ago
As I was sitting at the kitchen table this morning, I realized it was a Catholic Holiday of Our Lady's Annunciation, and it was the day we brought Brian home 18 years ago from the Veteran's Hospital in Santa Monica, California. Boy what a ride that was!!! They flew Brian and I from LA to Nellis Air Force Base where an ambulance met us and brought him to our other home in Las Vegas. The house we are in now, we purchased and remodeled for his care. The other house was a tri-level and very difficult for me to get him around without having to use ramps and move them around myself.
It was a wonderful occasion bringing him home since we would have Brian home to celebrate my birthday a couple days later.
This was the beginning of a lifestyle I would have never dreamed of accomplishing. My whole life changed the day we brought Brian home. Our whole family's lives changed that day too. We were touched in a way that could never have happened as a result of caring for Brian. Amazing!
It was a wonderful occasion bringing him home since we would have Brian home to celebrate my birthday a couple days later.
This was the beginning of a lifestyle I would have never dreamed of accomplishing. My whole life changed the day we brought Brian home. Our whole family's lives changed that day too. We were touched in a way that could never have happened as a result of caring for Brian. Amazing!
Saturday, August 8, 2009
Packing up
We are getting ready to sell this house - the house we bought to care for Brian. I started yesterday with Brian's service photos and senior photo - it is so sad to do this. I miss him so and I cry as I carefully pack each momento of Brian's away.
Monday, August 3, 2009
On my mind
I've been delinquent posting on this blog because of the seriousness most days of my thoughts and feelings for Brian. I need to take time to really make a commitment for him to follow through daily.
This past weekend the high school he attended had their reunion. I know this because I have a FaceBook page and many of my Friends are the kids now grown adults that Brian grew up with or knew from high school. It has been very bittersweet since starting the FaceBook and have the friends from Brian write about their life, but I do feel a joy at hearing from them. I've also picked up on some of the parents of the kids and some were dear friends of mine.
It was sort of odd when some had asked about Brian and were surprised to find out he had passed away. These individuals had moved away from the town where they all grew up so that was reasonable to know. Some made comments about Brian being so kind and nice. And, that he was.
No matter how much time passes I miss him and his laugh most of all. I remember his temper and lack of control especially playing tennis in Germany. He said he was always having to buy new tennis rackets. I would imagine by this time in his life he would have good control on that temper.
He had a girlfriend who loved him as much as he loved her and I know she would have had a very positive effect on him. He would have been such a great father. The last time he was home, Tom was just a toddler and Brian was great with him.
Brian was a balanced and grounded individual with deep faith commitment to God. I know he would have had a good influence on our other kids and especially Tom.
I read that the VA hospital in Houston, Texas, have received several millions of dollars for TBI research. They do need the money especially now with the soldiers coming out of Iraq and Afghanistan with TBI. I feel like they didn't have all the information on brain injuries they needed both at the military hospital and the VA hospital in LA. The VA hospital was connected with the UCLA medical training hospital. Brian did have an examination once by two excellent doctors in training. It was refreshing getting an opinion from them, although, they were not able to offer an hope.
Once we got Brian home, it had been mentioned why they didn't put a tube in his brain to drain the swelling - that was a good question. This procedure should have been done right away or as things were occurring. I don't know and because I was so stupid on those things at that time, I didn't know what questions to ask.
How can you ask a question or inquire about any type of care if you have never experiences an illness before or have the benefit of a family member or friend with that experience. We were so alone. I knew of no one who had ever had a child with severe brain damage. It was a difficult time, but Bob and are are very independent and we did our best for Brian. Our hope was always high even during the times when the physician I had back then had no encouragement for me. He would ask me why I have so much hope - he was a discouragement as a physician. We were finally able to find an excellent physician who worked with us until Brian passed away and we are still good friends.
We are able to re-do Brian's room. We have been trying to get it together to paint the interior of the house since we may be selling. I had wallpaper with ducks and hunting stuff put in Brian's room because growing up on the farm he loved to hunt. But, he never regained his sight and never realized how his room looked. His bed left the rug very loose and there are wheel print in the rug today. We'll be stripping the wallpaper and replacing the rug. I'm not doing this to lessen the pain of Brian's death, but because it's time. It will be difficult, I think, just as it was when the VA came and took away his bed, lift, gurney, oxygen tanks, and all the equipment I had for his survival. They were so kind, they weren't ready to rush in and take everything away quickly because they wanted to - but they were respectful of our pain. We had grown close with many of those I worked with for so many years caring for Brian.
It's been almost twenty years since Brian's accident. So much happened between that time - it's almost like a picture book when you flash the pages quickly by - many changes.
This past weekend the high school he attended had their reunion. I know this because I have a FaceBook page and many of my Friends are the kids now grown adults that Brian grew up with or knew from high school. It has been very bittersweet since starting the FaceBook and have the friends from Brian write about their life, but I do feel a joy at hearing from them. I've also picked up on some of the parents of the kids and some were dear friends of mine.
It was sort of odd when some had asked about Brian and were surprised to find out he had passed away. These individuals had moved away from the town where they all grew up so that was reasonable to know. Some made comments about Brian being so kind and nice. And, that he was.
No matter how much time passes I miss him and his laugh most of all. I remember his temper and lack of control especially playing tennis in Germany. He said he was always having to buy new tennis rackets. I would imagine by this time in his life he would have good control on that temper.
He had a girlfriend who loved him as much as he loved her and I know she would have had a very positive effect on him. He would have been such a great father. The last time he was home, Tom was just a toddler and Brian was great with him.
Brian was a balanced and grounded individual with deep faith commitment to God. I know he would have had a good influence on our other kids and especially Tom.
I read that the VA hospital in Houston, Texas, have received several millions of dollars for TBI research. They do need the money especially now with the soldiers coming out of Iraq and Afghanistan with TBI. I feel like they didn't have all the information on brain injuries they needed both at the military hospital and the VA hospital in LA. The VA hospital was connected with the UCLA medical training hospital. Brian did have an examination once by two excellent doctors in training. It was refreshing getting an opinion from them, although, they were not able to offer an hope.
Once we got Brian home, it had been mentioned why they didn't put a tube in his brain to drain the swelling - that was a good question. This procedure should have been done right away or as things were occurring. I don't know and because I was so stupid on those things at that time, I didn't know what questions to ask.
How can you ask a question or inquire about any type of care if you have never experiences an illness before or have the benefit of a family member or friend with that experience. We were so alone. I knew of no one who had ever had a child with severe brain damage. It was a difficult time, but Bob and are are very independent and we did our best for Brian. Our hope was always high even during the times when the physician I had back then had no encouragement for me. He would ask me why I have so much hope - he was a discouragement as a physician. We were finally able to find an excellent physician who worked with us until Brian passed away and we are still good friends.
We are able to re-do Brian's room. We have been trying to get it together to paint the interior of the house since we may be selling. I had wallpaper with ducks and hunting stuff put in Brian's room because growing up on the farm he loved to hunt. But, he never regained his sight and never realized how his room looked. His bed left the rug very loose and there are wheel print in the rug today. We'll be stripping the wallpaper and replacing the rug. I'm not doing this to lessen the pain of Brian's death, but because it's time. It will be difficult, I think, just as it was when the VA came and took away his bed, lift, gurney, oxygen tanks, and all the equipment I had for his survival. They were so kind, they weren't ready to rush in and take everything away quickly because they wanted to - but they were respectful of our pain. We had grown close with many of those I worked with for so many years caring for Brian.
It's been almost twenty years since Brian's accident. So much happened between that time - it's almost like a picture book when you flash the pages quickly by - many changes.
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