-Out of Africa, Isak Dinesen (Karen von Blixen)

I really like this quote from the movie and the book. It is so fitting to all things that happen in life, as you don’t want to be able to see too far ahead as you would perhaps make alternate choices, be scared, lose faith, or perhaps take a different road. But the roads we have chosen make us who we are. You cannot escape all the bad or troubling things that happen in life. Otherwise, it would not be a life. The life we live is the life that includes all the joy, smiles, laughs but also the pain, the grief and the sorrow that comes with it.

I am writing now as it has been 9 years since Tom’s aneurysm. It really is hard to believe, as it actually seems like yesterday. Getting that call, trying to get home, sitting in the ICU for 3 days straight. The 3 months in the hospital, the years of recovery, therapy, and trying to regain what was lost. The pain, the worry, the thought of what will be the future was so frightening. But we tried to find some hope each day. It wasn’t always easy.

This weekend, I have read through all 200+ pages of the Caringbridge journal and all the comments from 2011-2012. It is really surreal to go back 9 years and relive where we were then. But, we got through it and came out the other side with more gratitude, with more caring and with Tom with us when all the signs were that he would not survive. Most of what strikes me, is the hope that we all had then. The hope we had that he would survive, and the hope that was shared. No matter the dire situation, the setbacks, and the challenges we had to face, all the messages were of hope and support, and I believe it is that hope and the prayers that so many of you all shared for us, helped to take us through this difficult time. And many of those people are still our support team now that helps us throughout the year. We are grateful.

Tom still works hard every day to manage through his day. He came home in a wheelchair, unable to walk, unable to communicate, unable to even do the most basic daily tasks. Sam and I had to learn every day what to do and focus on the things that he could do and not what he couldn’t do. We found speech therapists, physical therapists, occupational therapists, eye doctors, neurologists, doctors, caregivers, support groups, our own therapies to help navigate through the life we now had. Tom still requires full time, 24 hour care. He has only a 3-7 minute memory. Just imagine that. Living like that. Being cued up for everything you do all day, from the moment you get out of bed to when you retire for the night, having to be told what to do.   I can’t imagine, and every day, I try not to get frustrated. Knowing that he can’t help it. It seems that is has all become our normal now, having people caring for him when we can’t be there. It was a hard thing to get used to for me. But again, it is just a different life than I had imagined. He has no executive function of the brain – he is only in the present. Not knowing what he did a few minutes ago to not knowing what he is going to do next. Crazy the way the brain works or the damage that can be caused. Tragedy, it will change the projectory of your life. This experience created a dividing line in our lives. There becomes everything “before” the illness, and then everything “after” the illness. The life is not the same and will never be.

I keep this in the back of my mind all the time…”Even the darkest hour of our lives only has 60 minutes”. If you can get through the hour, you can get through the next hour. And then the next day, the next week and the next month, the next year. And now, see where we are. 10 years.

I would ask myself all the “what if’s” …and the paths our lives take. But lives are not a series of “what if’s”. It can’t be or we could never move forward. We would be paralyzed. And, we have lost people along the way, along this path of life, but I always ask and keep in mind, that we may not end up walking as far as we would like. But are we happy with the trail we have left behind us? I hope the answer is yes. Yes to our actions, to our passion to our caring for ourselves and others. Doing what we said we would do. It should be intentional.

I do believe that grief/loss and love are intertwined. You can’t have grief unless you have loved. The level of grief we still have and that you have in losing someone or losing the person we knew, is more or equal to the love you have for that person. Whether the person is no longer on this earth or just that the person is injured that has changed them forever, grief is part of the acceptance process. You have to reform yourself around a new way of life. Toms’ new way of life and how to make his life meaningful.

Through all this, family life has moved forward – high school, proms, graduations, college and all the wonderful things life has to offer. We include Tom as well as we can with the limitations, but it also has its level of ups and downs, tears and smiles, frustrations for us all because we want it to be back to the way it was.  Things that he misses – Father Daughter weekends at the University, football games with Sam, visiting her at school.  Seeing her thrive.   However, we know, he may perhaps be imperfect now, (in the sense of his brain injury), but he can still have perfect moments with us.

One of our greatest gifts is our daughter Samantha. She has dealt with this situation and with the “loss” of her father with grace and much compassion. She is always there to help. She saved his life, literally. The 911 call, I have not listened to for almost 10 years…it is too shattering to hear. However, as an 11 year old, when she needed to do the right thing, she did. She made the call. I know it has been hard. That seems to be an understatement. While in middle school, Sam wrote school paper about her Dad, and what happened. There is a line she wrote that still grips my heart…”I no longer have the Dad I used to know, but I will always have the Dad I love.” She is quite something and it is so nice to see her spread her wings and follow her path in life.

At the end of the day, this is our life. Crazy as it is, it just is ours. People have worse things that happen. We all in our time think what happened to us is the worst possible. But it really isn’t. It is bad, horrible for us…but not the worst thing that could happen. The bravest thing we all can is to accept the world with gratitude, the way it is. I have learned to love the thing that I wish most had not happened. It is a gift to exist. It is a gift for Tom to have survived. With life and with our existence, comes suffering and there is no escape from that. You have to accept both, because, what is the option? Accept the life you have with gratitude. If you are grateful for your life, then you have to be grateful for all of it. You cannot pick and choose what you are grateful for. So I am truly grateful for the experience, for the time over the past 10 years to care for Tom, to help him get well, to help both Sam and I to learn to live a different life, to know about humanity, caring and accepting with gratitude the people in the world that want to help you. The caregivers, family, friends, and even strangers that often lend a hand. I am grateful that Tom survived and I hope that even as difficult as life is for him that in some way we have made it better. And we will be grateful for the time we have with him. And that through all this, it has made us better human beings, to slow down, to understand a disability, and be grateful and to most of all, know that life is still worth living no matter how difficult it might be.

In closing, the following is also from the book Out of Africa, and how challenges help us appreciate life and put things into perspective. “Difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.”

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Samantha and I have a saying, when nothing goes Right, Go Left.  That has guided us these past 8 years.   I admit, I have expected the best of things, I have been disappointed, I have planned for the worst, and been caught off guard, with good reason, and I have been happy with alternate results.  And, I definitely have been surprised in many ways.  Surprised with many things….Tom’s recovery, the people that help me, hospitals, lawyers, accountants, judges, doctors, recovery, therapy, social security, medicare…the list goes on and all of it a bit surprising.  So much to consider and manage.  And SURPRISE!  You also get cancer.  Yep.  You get one more thing to deal with.    Take that.  Deal with that.   Throw that into the mix and see how you do.  Things were going so good…..

Overall, I have been surprised that we could conquer it, work through it, manage it, and also  how resilient  we could all be and how we have found ways to make this situation the best it can be for our family.  We have learned to manage the challenges, to make the best of the situation, found ways to find happiness  and to make our family whole.   We could not have done as well as we have without the  help of our wonderful caregivers that made us whole, to allow us to take time off to enjoy life, to travel and find some peacefulness.

Always leave the door open for serendipity:  The occurrence and development of events by chance in a happy or beneficial way.  Like finding that $20 bill in the pocket of a jacket you haven’t actually worn in years.  Finding that lottery ticket in a wallet that is worth $50.  Just make sure you leave the opportunity open for an unexpected event that makes you smile or makes you happy or benefits you in some way.

Be here now.   Not much more to say about this but the fact that I have learned so much for Tom and his brain injury.  He has no executive function.  That is what makes us human.  That is what gives us the thoughts of the future, memories of the past and the motivation to do something.  He has none of that.  So I have learned that he lives in the moment.  What he is doing, experiencing, and enjoying is in the moment.  There is a lot to be learned from that.  Be in the moment.  Appreciate the moment.  Be grateful for the time in the moment.  Don’t think about “what if?” don’t think about “if only?”   It doesn’t matter.

When a doctor gives you bad news or bad odds, keep things in perspective.  Yep.  This is a hard one.  I worked with all Tom’s doctors on all the “bad” predictions, the reality of what was happening to his brain, to what may be, what he couldn’t do, won’t do and will not recover from.  There is no way to describe how all the bad news didn’t effect your own perspective, but I knew that I had to stay positive.  Then, I got my own bad news…those three words no one wants to hear.  You have cancer.   Perspective goes out the closest window.  After the shock subsides,  you must remind yourself, what is going well and that there are worst things….but at the moment, I assure you, you can’t think of anything worse.  You need to keep priorities straight.  What matters most.   Samantha and Tom.  Of course – get well so you can  take care of your family.  What is the worst that can happen?  Keep it all into the context of which makes the most sense.  Find your center, and keep it there.  Get the information you need, and don’t focus on all the worst.  Keep the faith.

When you banish fear and anger, you make room for bottomless emotions – love and hope.  Again, keep all things in their right place.  Make room for the right emotions.  Keep the love and don’t lose hope.  Fear leads to anger, anger leads to hate, and hate leads to suffering.   There is no place in life for fear or anger.  When someone is suffering, there is only room for love and hope.

You have to be….MUST be, your own advocate in today’s medical settings.  I have learned so much about our insurance companies and medical system and how broken it is.  You absolutely MUST be your own advocate.  Ask questions, ask why and why not.  Don’t take no for an answer.  Don’t take “I am not sure or we don’t know” for an answer.  Someone will know,  Find them.  With Tom, it was dismissed several times, radiologists, ER doctors, urgent care, etc.  All missed the signs.   With me, my cancer,  blood count seems low, it might just be normal for you…. it was we don’t know,…seems odd, not sure, haven’t seen before…and several labs with inconsistent results.  You need to demand answers.  Question denials of care, doctors and demand what you need.

Much of your train of thought is a runaway train when things are not going your way.  Sometimes the only thing you can control is your own perspective.  And in difficult times, you should always carry something beautiful in your mind.  Don’t jump on that runaway train.  Know that you can take control of that runaway situation, as hard as it seems.   Know that there is a light at the end of that tunnel and you can get there.   Don’t let things get out of control.  Pick one or two things that you can grasp and control and take it one at a time.  It is easy to feel that everything is speeding by you and you are just standing still.  It can be overwhelming…but take one day, one thing, one moment at a time, and know that you are doing your best.

Try not to be angry.   There are so many reasons I want to be angry.  Why did this happen?  Why didn’t I know?  Why did I go on my business trip?  Why didn’t the doctors know?  Why wasn’t more done?  You can ask and ask and there are no good answers.  There may never be any good answers to satisfy your questions.  But living a life of anger is not a healthy life.  Bad things happen in life.  You can’t fix them, you can’t blame people or situations.  Life is not always fair.  We may never get all the answers we want to satisfy our questions, grief or meanings of what happened.   Tom is still alive, and doing his best, and we are not visiting a headstone.  So, life is still good.  Challenged, but still better than an alternative.

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This year in June marked several milestones. 6 years since Toms injury.   Graduation from High School for Samantha, turning 18 and then off to college.  Also, those three words no one wants to hear:  “You’ve got Cancer”.

Lets begin with an update on Tom.  We were fortunate to have Tom’s dad and his wife Pat visit this summer in June for Samantha’s high school graduation.   Always good for Tom to spend time with his family. Tom has such a connection with his Dad and it was so good for them to spend time together.  Tom got to participate in many of the graduation activities and we were so happy that he could.   Although it is difficult for him to interact with a crowd, he seemed to be engaged and happy to spend the time with friends and family.  He still lives in his own “groundhog day”.    With only a 3-7 minute memory, he continues to require daily care and cuing up for daily activities.  From the moment he gets up to the end of his day, he is needing someone to remind him of daily activities, to provide meals and to ensure his safety.  He has no real motivation to do much, that stems mainly from the front lobe damage, but I am able to get him out for a short walk occasionally during the week.    I am very thankful to have found some care to come to our home 3 days a week to care for Tom and to give me some valuable and much needed time off.  Although we make the introduction every time she arrives, I know Tom enjoys her company and I know she cares for Tom and for our family situation and I can trust her and know he is in good hands.  It is so important to take some time off and have quiet time to refresh and prepare for the remainder of the week of caring for Tom.  It takes a lot of people, work, planning and preparation to complete a week.   It still makes me sad having to hire people to care for my husband, as this wasn’t the entire plan, but for now it is the best plan.

Graduation in June was the highlight of the summer.  Samantha worked so hard throughout high school for good grades.   She graduated with honors, and that wonderful smile on her face.  I could not be more proud of her.  There were lots of parties and celebrations going on all of June for these wonderful kids.  I am so thankful she has such great friends and a great support group around her.  I know she misses her Dad being a part of this big shift in her life, but she knows he would be more present if he could.   She has such a positive spirit, a fun outlook on all this life has  challenged her with and can make me smile just by walking in the room.   All summer I hated to think about her leaving for college.   I just couldn’t believe it was getting to be that time.  We took a trip to Oregon over the summer for Orientation and got a good feeling about the campus.  Still as a parent, you just can’t help but worry for them,  their safety, making the right decisions, their happiness, that they are eating their vegetables, making friends, and enjoying their new experiences.  Someone asked me the other day how it felt to be an “empty nester”.  I never really thought about it, as I don’t know that I qualify.  I had to think about it.  I don’t think that someone that is fully responsible for another adult, ever truly has an empty nest.  Our situation is just different.  My empty nest is not having Samantha here to talk to and laugh with.  But our nest is not empty.  I doubt that the  feeling of being an empty nest is even considered a part of our path in this life.  It just really doesn’t fit.  I always thought it would be Tom and I visiting Sam at school, playing golf and enjoying the rest of our life watching Samantha grow and create a life for herself.  The reality, is Sam and I will share much, I will watch her grow, achieve and we will know that we will include Tom but know that he won’t recall those special times and days, and the life we have created.    Although dropping your child at college is a moment of pride and triumph, I can tell you it is one of the most painful days I have had in quite some time.  I was so sad that Tom could not be a part of this path of her life.    Although she did say good bye to him, he doesn’t know where she is or what she is doing.  When I returned from dropping her at school is when I really felt such complete loneliness.  It just will not be the same.   I just know in my heart, that he would be very proud of her accomplishments even though he has no recollection of the events of these past few weeks.   But it is true sadness and worry that I have for our family at times.  Knowing that there is a tremendous responsibility to help Sam as much as I can, and make sure that Tom has what he needs.  It truly spreads my days thin.  There is personal sadness and anxiety that I have of of letting her go to have her much needed independence, and missing her before you walk out the  dorm door and coming home to seeing her room so empty.  It took me a week to even look into her room.  I felt so much grief.  Driving to the airport, I don’t remember having cried so much in a very long time.  A very hard day for us both.  I just couldn’t look back when she was walking back to her dorm.    We depend on each other.  Talking with her regularly helps us both as I know she worries about home but I don’t want her to, I want her to be free of the constant chaos and restrictions we have lived with since Tom’s injury.  She deserves the freedom and the independence from this challenge.   Seeing pictures of her enjoying a football game and with new friends makes my heart swell with joy.   In short, I always knew this phase would be hard. But I guess I never knew it would be this hard. A few weeks ago, I was melancholy down to my bones. Even so, writing this now, the fog has lifted somewhat. The range of emotions I feel has shifted away from grief and moved more towards excitement over what’s to come. A chapter has ended but another has begun. Nothing about parenting ever happens in a predictable fashion or as you imagined it, including the sendoff to college.

This October, I finally rang the bell at the UCSD Moores Cancer Center.  It is a tradition that when you do your last Chemotherapy treatment that you gather with all the Oncology nurses in the infusion center and ring the bell, signaling the last chemo.  Yep, go figure, who could possibly write this story.   Those three words you never think you will hear: “You’ve got Cancer”.    My doctor thoroughly believes a direct result of the stress that fills my days and that I probably had it underlying for a few years.  There is a really good reason when on a flight, that the flight attendant tells you to put your mask on first so you can care for those around you.  I think I skipped that part.  I was still working on the seatbelt.   I learned in December of last year that it was confirmed and have spent the last year getting Chemo every 21 days.   I can really say that it gave me a whole new focus and determination to change my daily activity to make sure I have some time for myself.   When you are 100% responsible for another human being that needs constant care, you end up not having a lot of time to ensure your own well being.   No matter what happens down the road, I owe it to Samantha wholeheartedly to make sure I am healthy for her.   And I owe it to myself.   But I also know now, after this year, that plans need to be made for the future for Tom and what care he will require that I will no longer be able to do.   Caring for him should not be my life sentence.    I will do my part, and I will guide the process, but also know that after this year, that it cannot be my entire future.   There will be help along the way and difficult decisions.   The San Diego Brain Injury Foundation has been a great resource and I know that I should feel complete and comfortable when the time comes for adjustments to be made in our care and lives together with Tom.   For now, our solution is some great in home care.    All I know is that in the end, I have done my best to keep with the promises made.  A lifelong commitment to another person is not always what everyone believes or thinks it is.   It sometimes isn’t all the great stuff, it is more of the hard stuff.  Tomorrow, I wish for Tom an easy day.  I know that it is only one minute, one hour and one day at a time for him.  No past or no future thoughts.  Maybe that is good.   For Sam, enjoyment at college and for all the joy her future holds.  For me, just keep me healthy.   I can manage the rest, as long as we have our health.  Take it from me, keep your oxygen mask on.  Breathe deeply.

Give the ones you love wings to fly, roots to come back and reasons to stay.  ~ Dalai Lama

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5 years ago today, Tom fought the fight of his life.  After suffering an aneurysm, and heart attack, Tom lay in the ICU at Palomar Medical Center in a coma.  Doctors worked their magic and beyond all odds, and beyond anyone’s belief, Tom did survive.  Thanks mostly to his first responder, Samantha.  Then  the paramedics and then all the doctors and medical professionals.  But mostly, you have to know that being loved and being held and being in everyone’s prayers, created a miracle of survival.

It is hard to believe it has been five years.  Much has changed since that day.  I am a different person by far.  The way we spend our days,  my work, Samantha’s life.   But what hasn’t changed is how we care for Tom.   We care for him, we literally care for him every day helping him dress, get ready for his day, point him in the right direction to go where he needs to go….and helping him to meals and helping him find  some joy in his day.   The days are the same to him, but different for me.  Different for Samantha.   We have seen the progress.  Little pebbles of progress that have formed our new life with Tom.   We witness the daily struggles, frustration and the small joys.   We also have seen the progress stagger and stop.  That is our frustration as well as Tom’s.   Sometimes just getting dressed can be a struggle on any given day.   Sometimes, he surprises us with a conversation or a memory.  Some days, all he wants to do is sleep.   We as a family have now accepted and understand the damage that has been done and the limits it has given us as a family.   We know we can still share special moments and remind him of special days, but every day for him begins again every 5-7 minutes.

I have come to understand and accept the pain and disappointment that life dished out to us.  But even with that in mind, I know that there is always hope, and the joy of having someone you love with you against the odds.  To be loved, to feel love, the express love and to provide love to your family is the bonus that a tragedy provides you.  We know Tom is glad to be here, Samantha is glad he is here even though it is not how she imagined her life to be with her father.  She can share special moments with him and have a photo to remember.   That photo also helps him to remember even though the memory is no longer in his brain.

You know that life is short, that life is unpredictable, unfair, and sometimes downright hard to take.  But in the end, we will always want to ask ourselves, “Did you get what you wanted?”  ….did you get what you wanted out of life.  No matter how long or short our lives are, we will ask ourselves that question.   I hope that in the end, that we will have some contentment of how we did do what we wanted,   we might have been forced into making decisions we didn’t know we could make, but we did it, and we are better for making those decisions.   Did Tom get what he wanted…I think he got life and that is what anyone would want.  No matter how difficult life can get, it is always better to have a life than not.

For the future, it is still uncertain for Tom.  The doctors do think he has made a remarkable recovery from their perspective.  For everyone else, the illness is over.  It has been 5 years.  And for most people, it is done in their mind.  For me, it is never over.  I still live with anxiety and fear of something happening.  I am certainly joyful and grateful for the way things did turn out.  We have Tom with us.  I do think about those less fortunate all the time, as I hear of people not surviving the very thing Tom survived.  Today, after 5 years,  I am grateful that I get to help Tom get ready for his day.  Help him dress, shave and make him breakfast.  As 5 years ago, I didn’t know that would be possible.   I look back on this year and my line up of the two most important people to me can still hug, have a conversation and make memories.  Samantha is a happy soul.  She knows and sees the frustration and it does affect her, but she seems to find the good in something about it every day.  She helps me so much without even knowing it when I watch her patience with Tom.  She doesn’t let the situation bring her down.  She just knows it is what has happened, it cannot be changed,  just accept it.  Work within the limitations that he has.

Caring for someone with a disability is like running a marathon with someone riding piggy-back and the finish line moving every time you get close.  I guess it is my way of learning that life has no finish line.  If it does, you just don’t get to decide when you cross it.   In fact, the course can detour dramatically at any moment so we better not become too attached to our own footpath.  You will be challenged on that path at sometime, and will have to make a decision.  Choose well.  Happy 5 years to Tom.

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Today I did something that I didn’t think I would be doing this early in my life.  I visited several short and long term memory care facilities.  My goal has always been to make Tom’s life and our life as”normal” and as best as it can be.  I also know that I can’t do it all, 24/7.  It wears you out.  You begin to make poor decisions, you get sick often, tired beyond belief, frustrated, sad , anxious, and grateful for the night time where it is the only time you have to yourself.  I also know that long term care for Tom by myself  is unrealistic and unsustainable.  I have to thank my good friends that spend so much time with me  and  for seeing and knowing that we may have reached our point to make more  short term decisions that allow us all quality time.   They have taking on the task of more research of where to go from here and what is now available.  Thank you Carol for all the time you have invested and the great information.  I know you have learned much also.    You have given me more energy and resources to make some short term and long term decisions.

I need to create an environment for Sam without the stress of the behavioral outbursts, so that she has only the best quality time with Tom.  Also, showing her that there are things that we can do for him that improve his day and that there are people that specialize in helping with creating a day full of meaningful activities.  Activities that help stimulate his brain, his heart and give him activities that make sense for his brain injury.    I am looking for things that help me to respond to the injured person I know, and not to the person he once was.  And, time for me to go back to some serious work, to feel better about myself and to make sure I am as strong and healthy as I can be for our future.  I also want to make sure that I am financially strong to lead this family…as there are many good days ahead, I just know it….as we have been through the roughest and toughest parts these past 4 years.

I walked through several facilities and I have to say, the people I have met are some of the best people in the world to dedicate their time and caring to those in need.  Those that can no longer take care of themselves, whether it be from dementia or from an injury such as Tom’s.  I was focusing on day programs for those that need professional activities that will help keep them from declining in their health and mind.   I found several that seem to keep everyone active and protect their dignity.  They are equipped with some wonderful technology that monitors their movements and keeps them safe from wandering or falls.  Amazing of changes I see even from the last 4 years of looking for resources to help with Tom and learn more about how to care for brain injuries.  I am confident that there are some good places that he will be treated with respect and that offer him an opportunity to get out and be active with appropriate care and activities.

In the end, just as always, my heart was heavy with sadness for what has happened.  The future decisions to be made.  But, I know it will all be for the best for Tom, Sam and myself.  I took Tom out for a walk yesterday, he thanked me for staying with him.

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One day, we took off to LaJolla Shores to beat the heat and humidity at our house.  I had cleaned out the car, so forgot that we didn’t have our beach chairs when we got to the shore.  Nonetheless, we had towels and a beach blanket and the shores is part  grass, and lots of trees and benches.  We had our picnic basket and just looked forward to a nice afternoon.  I really did think that Tom would be ok just sitting on the blanket.  However, that would only be a fleeting moment for our beach afternoon.  Once I struggled to get him down on his knees and then to sit down, I realized that his body still just doesn’t work like it did before.  He could not sit upright and kept falling over, was uncomfortable and annoyed.  We tried sitting up hill, laying down, but nothing worked.   So I again, struggled to lift him up off the ground and see if we could find a bench in the shade, or a tree branch he could sit on.  As we searched, I could see people looking at us.  No one moving over on  a bench to give him some space,  and as we went tree branch to tree branch trying to find a comfortable place for him to sit in the shade and relax,  and to each a sandwich, no one offered to help.  Only stares.   I really thought that we should just leave.  Sam was also frustrated, not really being able to help.  I was frustrated.  Hot, sweating and ready to leave.  I wanted to scream out to those staring…”would anyone of you please help me lift him up?”  But I didn’t.   Then, a very nice older man, came over, bringing his beach chair over and told me he was going to swim for an hour and he would be grateful if Tom would sit in his chair.  Only on one condition, that we wait until he gets back from his swim, so he could help me get Tom up out of the chair.   His nice gesture rearranged my heart that day.  There are still good people out there willing to lend a hand.   We sat there until he returned, and as promised, he helped  Tom out of his chair.   But for one hour, Tom was relaxed leaning back in the chair, Sam was swimming and I could sit and relax.

It is these times, that I realize how different our life is and sometimes just the simplest activity can be a sense of frustration for all of us.  That day, I thought you can really gulp down a lot of seawater trying to change the tides.  Trying  to change the situation.   Wise people tell us all to live in the present.  Be here now.  Toe to toe with each moment as it arrives.  And yet, sometimes I  want the past thinking I could have changed the outcome.  It is somehow looking for that  missing puzzle piece that may have changed things or made some sense of the puzzle that is now our life.  That beach  weekend, I think I had a trail of Kleenex that could stretch to the moon.  Tears for Tom, for the frustration, for the kindness of one individual that made our day better.  Frustration for trying to do something fun that turned into a huge frustration for us all.

I am still sad at times in the morning knowing that everything starts over for Tom each day.  You can’t help but feel a bit of sadness.  Seeing the confusion in his eyes and not knowing where to go.  But I know how to start over now and I know I can do it as many times and I need until I get it right for Tom, for me and for Sam.  I am also too aware that the biggest challenges and decisions of our lives lie ahead.  I feel a little worried about that but I also feel slightly prepared.  We have been through so much.   We have through all this found a little balance.  I am not sure how.   We have just evolved as a family.  An evolved life does require balance.  Sometimes a serious experience balances everything else.  I don’t really know.  The balance we have to have is having some laughter and happiness through the frustration.   However, those are hard to come by because anything can disrupt the intent.  Maybe at some advanced age, we get the gift of being happy regardless of our real circumstances.  Or maybe, just maybe,where things are right now got a whole lot easier to take regardless.   Life comes at full throttle.  There are no earplugs, no safe distances…everything is constant, high volume.  All the complications of our world vibrating all the time…with little down time.  Makes me wish I was tougher and didn’t feel so vulnerable to all things all the time.  Anything can happen and I have to be prepared.   I don’t think I am tough more than I am just resilient.  I have to be or I won’t be able to survive.  You have to really know that you have to stop being despaired about what you don’t have any longer and cherish what you have.  That is the key.  That is resilience.   Sam has also learned it.   The impossible hope of parenthood is to shield your child from pain, from disappointment and from uncaring people.  But that is part of life.  Sam has learned more in the past 5 years than most will learn in all their life about pain and disappointment but also about how good people can be.  She saw it firsthand that day and was grateful.

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I must say, it is sure hard to believe it has been 4 years since that dreadful day when Tom suffered his aneurysm.  I think about that day regularly.  Certainly every day, when I get Tom up to start his day and he asks me “where are we?”.  And asks, “where is the bathroom?” , “Where is the shower?”  “What should I do next?”  he asks.  So we start our day.  I guide him through the day, from start to finish, every day.   The same as we have for the past four years.

So much has changed since that day.  Our lives are surely not the same.  Tom’s life is not the same.  We are certainly lucky to be able to have him with us and being able to tell him how much we love him,  instead of standing at a grave telling him how much we miss him.  However, life is such a struggle for him every day.  Not only for him, but for Samantha and  myself.  Living with a person that has 3-7 minute memory recall, is about as difficult of a life you can get.  Tom can’t remember when or if he ate, so always wondering if he has eaten; can’t remember where he lives or sometime even his daughters name, age, what grade she is in or where she goes to school.  He can’t remember what time it is during the day and if he should be up or in bed.  He gets frustrated easily, because he knows he will forget the day and he can’t figure out why.  He knows something is wrong with his memory, but not sure why.  Thank goodness, he doesn’t remember anything of the stay at the hospital or what happened.  He just does know something bad happened.  And, often times asks why it happened.  I wish I knew a good answer to that question.  I ask it often too.

I know they told me to prepare for the worst when I saw him, what they didn’t tell me, was how this life would change.  No matter what the outcome was to be.  I remember how terrified I was. Terrified he wouldn’t survive, scared that he would survive and what would happen to him;  searching for the words to explain to Samantha what had  happened and how brave she was to do what she did.   There are a lot of things no one said anything about:  Extreme grief, anxiety, hopelessness, hopefulness, exhaustion, anger, confusion, extreme anger all over again and some real pity and sorrowfulness.  Some days you feel all of them over and over again.  Sometimes forcing yourself to just laugh at something.  Even if it is sad.

Tramatic Brain Injury (TBI).  Those three words.  They are the words that change everything.  Now it has been 4  years and the TBI Tom has suffered is very saddening to me.  I can look into his eyes and see how sad he is sometimes.   Not that many days that he seems to be excited to be alive any more. I think when you stop getting better, you stop  looking forward to your days, as you know the day will be the same – a day you will not remember.  The only common thread is that every day is a new day for him.  We can either make it a great day, a good day or sad day.  I try each day to start it to be a great day, but there can always be complications every day. At the end of the day, I hope he feels some joy.  However,  I feel like I am living 2 lives every day.  One for me and one for him.  One life is exhausting enough, but trying to be two people every day has left me warn out.

Tom, Sam and I  have spent the last 4 years navigating through all the therapies,  a variety of doctors and numerous medications to help.  Learning, hoping, and trying everything we can to help make things better.  They are now as good as they will get.  So we try to make each day enjoyable for him.  Samantha finds ways to make him smile.  He is very proud of her and her accomplishments.  Even though he has to ask her every day, what grade she is in, she seems OK with those repetitive questions.  She kindly answers and then goes on her way.  We try to do something together every day.   It is important that we can create some new memories that we can be proud of.  We have our old memories of Tom and how happy he was.  He was always playing tricks on Sam and I.  They enjoyed their time together going to the park, making sock piles while I was traveling, and cooking dinner together.  The trips we took as a family…such great memories.  Sundance,  Utah was one of our favorite places to go to relax, ski, hike and spend time together along with the numerous traveling and destinations we did for my work. We had so much fun.   Although we no longer do those things, we do try to do other things to create new memories of our new life.

“Always knew looking back at the tears would make me laugh; but never knew that looking back on all the laughs would make me cry.”  ~Dr. Seuss

In addition to doctors, I have spent the last 3 years working through the complex legal system for personal injury lawsuits.  We live in a very complicated legal world.  I thank both my Family/Probate attorney and my Malpractice attorney.  Their only guide was to make sure Tom will be well taken care of financially for the remainder of his life and that we had the legal process for me to care for him in proper order.  My advice to anyone that is married, you need a will, a living trust, healthcare directives, and power of attorney.  Without those valuable documents, you have no rights, cannot make medical or financial decisions without them.  Really.  Your rights as a spouse are limited when there is a catastrophic illness where your spouse is incapacitated.   Except of course, you do get to pay the bills.  Our attorney’s  were as successful as we could be given all the barriers. I am grateful for their  professionalism and helping me to understand the process and my rights for Tom and Tom’s rights.

With all the above said, we have good days and bad days.   I still have a lot of grief for Tom and his situation.  I grieve for the loss of my husband.  Our relationship.  That we cannot travel together, make decisions together, and grow old together.   I grieve for the loss of relationship between Tom and  Samantha.  It will never be the same as it was.  And, as she grows, and leaves home to pursue her own life, I wonder how all of our lives will be.  No one knows.  There is not one day that I don’t have some feeling of grief for Tom and his situation.  But I try to manage through it making sure that he at least has something fun and enjoyable to do each day.  Sometimes, it is just a walk on the beach, hit a few golf balls at the driving range, sometimes a meal out for lunch and sometimes just looking at pictures and talking about Samantha…where he finds the most joy.  The grief never really goes away for any of us.  Truly.   I just know, eventually, it will move and take up a smaller space in my mind that will make room for other things, too.

Thankfully, we have some great friends and family.  I am so grateful for those that still bring a dinner by, invite us over for a meal or make sure I get out of the house for a few hours for a glass of wine or movie.  Those that hop on an airplane simply to visit for a weekend and help around the house. Those that always send a quick text or email, or phone call to check in.  It warms our hearts to know that we have friends all over the globe that want to show us their support.  I think living in San Diego helps drive of few of those winter visits from Seattle.  We welcome them all.    But, the reality is…people go back to their own lives.  Many of the phone calls from some  get further and further apart, the visits become further and further apart and some just cease all together.  In the meantime, we have been privileged to find some great caregivers that are so good to Tom and to our family.  Sam and I  can actually go to a movie and spend some time outside the house that is important for our well being also.  Sam and I can feel comfortable taking a few days off for a quick trip knowing that there is someone there for Tom. We were fortunate to take a trip to Paris this past summer, something we had promised Samantha we would do.  We loved the trip but of course, missed Tom.  We are  trying to built back a life that is what was supposed to be.  Seeing the world together.  Spending moments together to create lifetime memories.  We miss Tom through much of this but know that we are taking care of him and he will also have a great rest of his life as long as Sam and I are there with him.

I will close with the below are lyrics to a great song by Pink.  This song has a lot of meaning for Tom and I.  It is a great ballad that is on an album You + Me – Rose Ave.

You and me were always with each other
Before we knew the others was ever there
You and me we belong together
Just like a breath needs the air
I told you if you called I would come runnin’
Across the highs the lows and the in between
You and me we’ve got two minds that think as one
And our hearts march to the same beat
They say everything it happens for a reason
You can be flawed enough but perfect for a person
Someone who will be there for you when you fall apart
Guiding your direction when you’re riding through the dark,
Oh that’s you and me

You and me we’re searching’ for the same light
Desperate for a cure to this disease
Well some days are better than others,
But I fear no thing as long as you’re with me
They say everything’ it happens for a reason
You can be flawed enough but perfect for a person
Someone who will be there for you when you fall apart
Guiding your direction when you’re riding through the dark

And they say, everything it happens for a reason
You can be flawed enough but perfect for a person
Someone who will be there for you when you start to fall apart,
Guiding your direction when you’re riding through the dark

Oh that’s you and me
Oh that’s you and me

The post Four Years: June 13, 2011-June 13, 2015 appeared first on Shoulder Season.

Our long and stressful legal battle is coming to a close this week. I hope. We still have plenty of legal paperwork to get completed and with the help of our persistent attorney, we hope to bring this three year battle to a close in a couple months. However, it is not without mixed emotions and feelings of much anxiety of the future.

At the end of all this, no one really wins. No one goes through this and comes out the same. Not me, not Sam and definitely not Tom. It is easy to look at all this and feel sadness and pity. I however, feel immensely proud to be the one to fight the battle for Tom. But it is not without a lot of sorrow and emmense sadness and some anger thrown in for good measure.   Not one person will win in this. We all have lost. There is no amount that will make this whole. Win or lose, we already did loose it all. Tom will never be the same and our family life will never be the same. He will require 24/7 care all of his life. I didn’t expect this, he sure didn’t and Sam did not deserve this situation. It isn’t fair for anyone.   But we can’t change it. We will care for him as long as we can, and I hope he outlives everyone’s expectations and that it is as good of a life as we can make it.

June 13, 2011 will forever be etched into my brain. It was my first lesson in TBI, aneurysms and the devastating effects that it would have on our family. The look of someone in an ICU hooked up to machines, and IV’s, tubes and all, is not a look suitable for even the strongest of loved ones. I have learned about hospitals and how they work. Insurance companies and how they rule. I know I can sleep standing up or sitting up in a chair. I have learned how much hard work it is to recover from such an injury for the injured and their loved ones…and it does take a village:   Physical therapists, Speech therapists, Occupational Therapists, radiologists, caseworkers, Lifecare planners, counselors, Neurologists, Neuropsychiatrists, Neuropsychologists, attorneys, court investigators, probate, conservatorships, caregivers, friends and family.   I learned to pray. Pray very meaningfully. Not asking for anything, but strength to get through this, and to make the right decisions. Sometimes, I didn’t think it would really help anything. But I did it anyway.

Tom has no memory of what happened. He describes how he didn’t think he would get out of the hospital. He knows the doctors worked hard to save him. He often talks about that it just wasn’t his time to go. That is why he is here. He can describe a place he went, didn’t know really where it was, but he wasn’t suppose to be there. He talked about it often when he first got home from the hospital. Makes you really wonder.   Tom doesn’t know exactly what did happen, he knows he isn’t the same, and he does know something bad happened.   He tries hard each day to get better. He still struggles with daily activities, being cued up to complete a task such as showering, shaving, brushing his teeth, and laying his clothes out in the order they are to be put on. He has no patience. He only has a 3-7 minute memory, no sense of taste or smell, has trouble sleeping, gets fatigued easily. He doesn’t know when or where we met, doesn’t remember when Samantha was born, how old she is, sometimes he doesn’t remember her name. He can swear like a drunken sailor at the drop of a hat.   And then apologize, not knowing why he said what he did. I am the narrator of his life, repeating what needs to be done daily, day after day after day after day. If something isn’t said on what to do, it simply doesn’t get done.

The injury caused deficits in his executive function. Executive function relates to a person’s ability to initiate, plan, fix mistakes, complete and evaluate the results of any given activity. It effects everything in life from making a cup of coffee, to paying the bills. Just think of the brain as billions of little arms passing information back and forth. During a brain injury, some of those arms are amputated, so messages can no longer be sent, or have to take a detour. That is how the brain begins to heal itself, taking little detours to get the job done. It doesn’t always work, though. Sometimes that arm is just gone, and with it, the job it once performed.   No matter how hard you try to get it to work, it is simply gone. Forever. Sometimes there are strategies that will help with the deficit, some can’t be helped at all.

Our life now is a sitcom, a tragedy, drama and a series of short films all pulled together as one. Emotions can go from denial, acceptance, anger, peace, joy, and sorrow at the simplest provocation. It is possible to feel two emotions at one time. Feel lucky Tom is alive, cheated that I no longer have the husband I had on June 12, 2011. Thankful that he can walk and not be in a wheelchair, ungrateful that his days are limited to listening to a book over and over again, or watching TV. Hopeful for any new activities that I can find for him and then hopeless that there isn’t more for him.

Small things will still make me cry: Tom thanking me for taking care of him. Thanking me for making him a meal. Or Tom, making some gesture that is familiar from our past. Sometimes I just weep at any bleak reminder that our lives radically changed. The words: “never the same” will haunt me and will follow me forever.   Every book I read, website I visit, meeting I go to about TBI, always leads to the same conclusion, “things are never the same again”. I have read so many books, and in the end, all say, they have found “peace”.   Maybe that is just a nice way to say that they have adjusted to their own situation. Yet in all that I have read, the end of the story is that the changes are viewed as positive. I have to also see and know that some of this has been a change in a positive way. I know that each day, I will find at least one positive thing or action that I know is because of this. It might be the opportunity to help someone else or it may be something as simple as a thought. I do wonder much about what is in store for our family. What happens in 5 years? 10 years? It feels like a lifetime already. I feel I have aged 10 years this year.

For Samantha, it is a part of her life, part of her story. This will not define her entire life, but it is part of her story. Just one piece of a life, not her whole life. However, it has effected her forever. She doesn’t like to talk about it much, and has a small circle of friends that she doesn’t have to explain much to them. She just knows that she can count on them.

For me, I have the role of Mom, and of Dad, caregiver, breadwinner, cook, housekeeper, accountant, chauffer, repairman, counselor, researcher, teacher and everything that it takes on a daily basis to keep this family running. I feel that Tom’s injury has swallowed me up most of the time. There is sometimes no way to describe or explain the void you have inside. Since his injury, I love him more for his resilience, but also know that I have to build a new relationship with someone that is drastically different than who I knew before the aneurysm. Each familiar emergence will be precious. Fear of the future, I do have that. But I know that my future is with Tom and with Sam.

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I have take some time off from writing. It has been busy, with travel, holidays, and working through new medications for Tom.  It is a combination cocktail all the time.  Change one, change another, increase one, decrease another.   Trying to find the right balance.

This Christmas, Sam and I took a trip on a river cruise through Germany. Delightful to see all the Christmas villages and all the decorations. Europe really celebrates the holidays in style. It was an enjoyable trip. It was not without a little drama at home, with a new caregiver and new medication, but we made it through the week and home without too much difficulty.  I highly recommend a small river cruise over a larger cruise ship. Much more intimate.

After our return, we headed up to Los Angeles and the Pacific Palisades for Christmas with Tom’s family. This is the first year that Tom, Sam and I had spent the Christmas holiday with Tom’s family. Besides all the challenges with the accommodations, it was a good time to spend time with his siblings and for Tom to have some nice memories (whatever he can collectively recall) of the holiday’s with his family. Most importantly, was that Anthony had all 6 of his grandchildren by his side this year. He enjoyed it so much. I am so thankful that we all had this time together. Thank you so much to Anthony for arranging the house. Beautiful views, nice space for all and a good time overall.

Tom had a good week, for the most part. A few outbursts, and discontent with being away from what he knew at home….but in the end, I think he had a good time. I think it was also good for all the family to see his daily challenges so they know what the circumstances around his care are. I know they all love him and care for him. I also know how difficult it is to see him this way. I live with it daily. He is my spouse, my best friend, my half of my life…and it is hard for me to see him struggle. I wish I could just be in his life or head for 1 day so I would know more about how to care for him. I do what I can, I do what I know and I do what I have learned…but there are some days, I just wish I could know more, do more and be more to him.   We all get frustrated; we all get tired, we all get crazy over why this is the way it is. But, we all get over it and get back to work, to life and to living. That is all we can do. We don’t have the luxury of waiting for things to get better. They won’t get better…we will only get more used to the situation and the reality of what it is for Tom, for me and for Sam.

This year, we have a lot of our legal challenges behind us,  We have more resources at hand to help us.  We have more caregivers, and more people willing to help us so I feel good about the future.  I will always be grateful for those that take their personal time to help me and Sam.  You won’t be forgotten.  You all know who you are….My brothers and sisters,  Alice, Sharon, Jeff, Kevin, thanks for being there when I need a hand.  Aunts, Uncles, and friends so many I can’t list them all…..Thanks for giving us a hug when we need it and most importantly, thank you for giving Sam the hugs and kisses she needs and misses from her Dad.

After Christmas…we all went back to work, to school, to our lives as they were before. Ours is simply not the same or normal in any way. We live with no memory. We live with the frustration. We live with the chance that something else may happen. We live with trying anything we can do to help make Tom have a good life and for us to have a meaningful relationship with him and a good life too.   We try so hard to make it all normal, but there is no normal for us or for Tom.

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