2012-05-08 16.47.16

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