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2nd Year

8/6/2014

 
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Today marks the 2nd anniversary of my husband's accident. 

 A year ago, I dreaded the mark of the first anniversary.  I knew my mind would be overwhelmed with painful thoughts of a day I wish had never happened. I would re-live each hour, and all the horror that struck each member of my family, and most especially my husband.  I was more worried about the expectations regarding recovery from a spinal cord injury and concerned that we were at the end of the time-frame for improvements that were set by physicians and that which was printed in medical text books. 

 Yet, August 6th, 2013 came and went. We shed our tears, and got through the day.  I was glad I didn't have to worry about that day anymore.  It was done, over-with, and the pressure was off.  My husband was still with us, I still had my family, and the world didn't come crashing down.

So here we are, another year gone past.  What's different about this year is that I'm not caught up in the worry of the anniversary, but instead am celebrating the fact that we got through another year in-tact. We've had our challenges, but this past year was better than the year before, and hopefully this next year will be even better.

In honor of this day, I  want to raise my glass and give a toast to my husband for all he has endured these past two years.  You would be brought to tears if you only knew what it is like for him on a daily basis.  The aches and pains, the loneliness, the frustration, the sadness, the disappointment, the struggle, the missing out...it lives inside him, but you would never know it, because he puts on his warrior face each and every day, and fights through.  I admire his strength, courage, endurance, and above all the love he shares with me and the kids.

While "Happy Anniversary" would not be fitting, this 2nd year anniversary is to be recognized for all the victories, large or small. So here's to you Swede.  May you keep fighting the fight, and find peace and happiness in all that you do. I LOVE YOU!!


Outdoor Project

7/29/2014

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Determination

7/9/2014

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We all have dreams.  But in order to make dreams into reality, it takes a lot of determination, dedication, self-discipline, and effort.
~Jesse Owens
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I  still get choked up thinking of this special day…March 28th, 2014~my daughter’s Junior Prom. 

Earlier in the day my son rushed my husband home from his rehab so that he could get see my daughter before she embarked on the biggest day of her Junior year. He wanted take a special father-daughter picture, and was determined to stand-up and hold her hand.  He had already missed out on several milestones involving our children that were important to him due to his long stay in the hospital. He missed out on dropping off his son at college, and was unable to take our daughter-the one he spent hours teaching how to drive-to the DMV when she went to get her license. He missed homecoming dances, open houses, and special school events. But now it was his daughter's first prom. He had thought of this day for so long, and there was nothing that was going to get in his way.

When my son wheeled him through the door, after the long drive home from therapy, his baby girl was walking down the staircase looking stunningly beautiful like we had never seen her before.   He was so happy he was able to make it home in time to see her, but there was also a sense of urgency to take the picture as quickly as possible as her date was on his way. 

By the time Vaughn was ready for this special moment, his body had tightened up as is always the case after rehab. He was worn out, exhausted, and his muscles ached all over.  As always, he squeezed every ounce of effort during his therapy session. He gave it his all with nothing to spare.

Yet through all the pain, and the weary muscles, my husband managed to stand up even though his body wanted to sit down.  He struggled a bit like a baby deer standing for the first time.  He gritted his teeth, let out a groan, locked his knees and stood up! My daughter cuddled up to him, helping him balance for a few seconds. Although his legs were starting to wobble, he smiled for the picture beaming with pride. As I snapped the picture I got-teary eyed because I knew how much he extended himself to make the moment happen. He did it for his daughter, but most especially he did it for himself. 

Some of the biggest life-lessons that have been bestowed upon me are made possible by a man who never gives up, never stops trying, and never stops believing for the impossible to become possible.

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The Turning Point

7/2/2014

 
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It was exactly one year ago, at the end of June 2013, when I was asked to join my good friends on a twilight hike up Mt. Diablo-the beautiful landmark in the backyard of our town of Clayton. It had been years since I stepped foot onto that mountain. I was grateful to finally return and get some much-needed exercise, as well as a mental break from the situation at home.

  When the kids were in elementary school, I used to hike with a group of Moms who also had children the same ages as mine.  Every Wednesday, after we dropped the kids off at school, we tackled the mountain. We picked different routes each week, but before long we had repeated the hikes so many times, that the trails became second nature. I found comfort walking the trails, seeing the same trees, smelling the same smells, being with the same friends, hearing their same laughter, telling the same stories, feeling the same happiness.  We did this for years, and for me that mountain represented familiarity, tradition, and dependability.

  But the twilight hike I took on this night, in June of 2013, was different.  I was with the same friends-only four of us on this particular hike-but inside I felt uneasy. I so wanted the familiarity of the mountain and my friends to seep back into my bloodstream, but those feelings weren't surfacing. I felt so out of sorts, like a fish out of water. The mountain didn't change. My friends hadn't changed.  They were the same, fun-loving friends as before.  I was hoping to feel the same comfort my friends and that mountain used to bring me, but I just wasn't feeling "it."  It seemed as though everything that transpired over that year had finally caught up with me. 

  Yet, it wasn't just that hike that was making me feel like this. It was every event I attended around that time-in June of 2013. Graduation parties, birthdays, a memorial, get-togethers, etc.. I used to be alive at these events; it's what I lived for.  I'm an extrovert by nature, one who is energized by people and events. The pleasure that I would get while walking into a party had disappeared. Something deep inside me was hiding, lying dormant like a bear hibernating in winter. Perhaps it would be temporary, and I would be able to crawl out of the cave when the time was right.  At least that's what I hoped, anyway.

  The place I felt the best was at home, in my routine, away from a world that I now had a hard time fitting into. It's what was familiar, it’s what gave me comfort, and it’s where I belonged. There was no judgment or awkwardness at home, only open arms. I knew the pain that I was feeling stemmed from the accident and the adjustments everyone in my family, and most especially Vaughn, were having to make. It was that simple, and nothing more.

  Back to that twilight hike...one of my friends who was with me that night, was someone who I had always admired. She is spiritual and perceptive; she’s my kindred spirit. She and I were walking and talking together that evening and she conveyed how concerned she was for me.  She was very in tune with me, and said that while my mouth was smiling, my eyes were not. She detected the pain I was in fact feeling inside. I couldn't fool her...she just knew. I felt safe to open up to her, and she in turn listened and gave me some great advice.

  But the thing I hung my hat on, and to this day will never forget, was the prediction she made.  She told me that one day, when I least expected it, I would wake up and the dark cloud that hovered above me would be lifted, that my soul would be unchained from the noose that was strangling my spirit. She guaranteed me that day would happen. She encouraged me to hang on and to have faith. I wanted to believe her in the worst way.  I missed my old self, and desperately wanted her back.

    Approximately four months later, while we were visiting Kyle in Santa Barbara, I was sitting outside on the balcony one Saturday morning all by myself. I was enjoying my coffee, the sounds of the birds chirping, the warmth of the sun on my skin, and was so excited for the day that we had set up to be together as a family.  As I sat there, I felt someone hovering over me, but it didn't feel like a stranger. It felt like it was someone who I hadn't seen in a long time. It was someone who I missed and was desperate to see again. I didn't have to look up for I knew who it was...for it  was me-the person who was lost and who had finally found her way back!  It dawned on me that I was genuinely feeling something positive again. Those familiar thoughts and good feelings had returned. That dark cloud had finally released its tight grip and floated away.  I'm not exactly sure the exact moment when that cloud sailed away, and what I did differently for it to happen.  I just knew that it was gone and my true self was shining through again.

  I was so glad I went on the hike that day and had the opportunity to talk to my special friend. I have come a long way from where I started.  I take more time to enjoy the small things …the chirps of the birds, the stars, the moon, sprinklers hitting the grass, the sounds of crickets, etc. As for the big things...I appreciate them even more...my husband, my children, my friends,and my health.

  Life may not always be fair and perfect, but I've learned that even in the face of hardship, life is precious and is meant to be enjoyed. Happiness is possible, you just have to open up your heart and let it in.

How You Can be Helpful...

6/25/2014

 
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One of the certainties in life is that at some point someone close to us will have the misfortune of a long hospital stay.  My husband spent a grand total of 111 days in the hospital, of which I was with him all but one day.  Over the course of his stay, I came to appreciate some things that helped him as well as me navigate through this difficult chapter in our lives.  I would like to pass on some tips that worked for us, and hopefully you will find this helpful for you and your loved ones as well.

  •  Keep a journal.  The day after my husband's accident, I quickly realized that there was so much information that was being relayed that I needed to keep notes.  I was so glad I did because that journal (I ended up writing 114 pages) was invaluable and is something I continually reference back to, whether it’s talking with his current physicians and therapists, or gathering information for insurance companies, etc.  Important things to document are the names of the physicians and nurses who oversee the patient’s care, milestones, important facts, and all medications.  If you aren't sure..ASK! I also documented my thoughts and sentiments, and it's been good to look back to see how far I've come both mentally and emotionally.

  • Compliment! If a physician or nurse does a superb job, or does something extra special, be sure to let them know how much you appreciate it. The mileage you will get out of doing this small gesture will pay big dividends. I guarantee you, your loved-one will get treated extra special going forward. Four weeks after my husband's accident, I walked into his room on a Saturday morning at Santa Clara Valley Medical Center, and a nurse was washing his hair with water into a garbage bag that she hooked behind his head.  This was the first time water touched his hair in 4 weeks.  Up until this time, they were putting dry shampoo into his hair. If you know anything about dry shampoo, it doesn't really get your hair clean and is no substitute for water. The nurse didn't have to do this, and this wasn't protocol, but she cared enough to get the sand out of his hair that had been in there since his accident in Maui. We both got teary when I thanked her. She showed so much compassion, but she expressed that she rarely got complimented for the special things she did for patients.  For the next 6 weeks, while Vaughn was on her unit, she protected him and went out of her way to ensure he had the best care.

  •  Conversely, be vigilant. If ever you feel your loved-one isn't getting the proper care, or is threatened at any point, speak to someone in charge.  It doesn't have to be confrontational, but sometimes informing a charge nurse can easily rectify the situation.  Fortunately this only happened twice with Vaughn during his hospital stay, and the situation was solved in a civil manner. Someone has to be the eyes and ears for their loved ones; an advocate for the patient, especially when the patient is incapacitated and can't speak for themselves..

  • Bring photos from home and set them up around the room. Your loved-one longs to be home and photos can go a long way.  My friend Kami sent a collage of some great pictures from some family vacations we took together.  We taped it to the wall along with our family pictures. If your friend is in the hospital, sending pictures is a great, inexpensive, and wonderful way to express your well-wishes.  A picture video frame with loaded pictures is also a great idea and can give the patients something to look at, and get their mind off of their situation.

  • Send cards.  So many great friends and family members were so thoughtful to send cards.  Vaughn looked forward to me reading the cards that he received each day.  Every card we got we put up onto the window sill for him to look at. In this day and age of electronics, a hand-written note is something that isn't done enough, and can be invaluable to a sick or injured patient. It is something that can be treasured forever.  

  • Send your well wishes without an expectation for a reply.  I always appreciated when someone would text/email/send card with a message that said something like, “No need to reply, but just wanted to let you know that we were thinking of you, and if there is anything you need please let us know.”  All messages were very much appreciated, and the outpouring of love was overwhelming. We understood that everyone wanted to know how Vaughn was doing. If you are the loved-one in this situation, pick a close friend to relay updates to and then let that person send a group message to all inquiries.  It really frees up some valuable time and takes a little stress off of the family member if you keep the questions that require a response to a minimum.  I tried to respond to everyone,so if I didn't get back to you, please know it wasn't intentional. 

  • Get some sleep and make sure to exercise.  If your family member is in the hospital, and you are bed-side most of the day, make sure you take care of yourself.  Take a walk, get fresh air, and make sure to get some sleep. I had nurses encouraging me to do this all of the time, and I probably didn't do it enough. You can't be any good to the patient if you aren't good to yourself.

  • If you are visiting a friend in the hospital, try to keep the visits brief unless the patient asks for you to stay longer.  Vaughn slept a lot, and he never wanted to be rude, but I know some days he needed that extra sleep.  These patients have been through a lot, and they are exhausted. Also, it's better to bring balloons than flowers, at least if you are on a spinal cord unit.  Because so many people are on ventilators, they won't allow flowers in the room, for they fear that the seeds from the flowers may dangerously get into the ventilator hoses.

  • Start a meal campaign for the family and the patient upon return from the hospital.  Lord knows no one has the time or energy to cook and a month's worth of dinners and people signed up to pick up my daughter from school was the greatest gift my community gave to me and my family.  My dear friend Kim coordinated the  "Lotsa Helping Hands" website that is designed to help family members in need. We were so grateful for all that she did in setting this up. I also had some sweet friends send me gift cards for restaurants, which also was a blessing as it allowed us one less meal to think of, and gave us the opportunity to get out of the house.  I even had a family (thanks Mike & Christine) send some gas cards, which was so appreciated because I was driving back and forth to San Jose at a time when the prices of gas were at its highest.

  • So many people want to help out, but they aren't sure how. I always got asked, “What can I do to help out?” Most of the time I said, “Thank you, I'm good." because I always felt that the things I needed would be hard to ask for. The best thing you can do for your friend-in-need is to take over a task that you know would lighten the load. Don't ask or if you do, don't involve the friend with more questions and details, because then it may overwhelm the person you are trying to help.  For example: surprise your friend; it will have enormous impact . Two weeks after Vaughn's accident I finally came back to the house.  When I walked through the door I was  pleasantly surprised... My friend's Caren and Karen cleaned my entire house, folded my children's laundry, and scattered the house with fresh flowers.  I had no idea they did this and if they would have asked, I would have said, "Thanks, I'm good." You can't imagine how this made me feel during a time when I wasn't walking through that door with Vaughn.  It was so incredibly generous and special. Thank you so much friends!

  • Another example...I wrote on Facebook that I had gophers and that they were back with a  vengeance. Critter tasks had always been Vaughn's project. I asked my fellow FBers what I was supposed to do. My friend Mike didn't say anything.  He just came over, didn't bother me, didn't ask for any thing, brought his gopher box of goodies, and just dealt with those critters all on his own. It was one less thing for me to think of, and the style in which he did it was full of class. Thanks Mike!  

There were so many other examples of kind gestures and good will. We are so incredibly blessed to be a part of such a wonderful and caring community.  The biggest thing you can do for your friend and your friend's family during a devastating time in their life, is to be there in body and in spirit.  Everyone wants to be loved and accepted, not abandoned and neglected.  It takes a village, and we are so proud that the village we are a part of, has accepted us with open arms.

An Affirmation for Those Who Hurt

6/18/2014

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The undeniable truth is this:
     physical suffering is a condition of life on earth.
No one is forever exempt.
There is an affliction to illness and disease
     that narrows one’s vision 

and diminishes one’s vitality.
There is a wounding to physical trauma of all sorts
     that can hurt not just one’s body, 

             but one’s spirit as well.
There can be a torture 

to life-changing disablement
and an agony to life-threatening disease
that can darken one’s days 

and blacken one’s nights.
Yet I believe that suffering can be more than mere suffering,
And pain can be a pathway leading beyond itself
to something of abiding significance.


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 For that which hurts and limits
can be just as well
that which refines and instructs.
What is refined is one’s wisdom, one’s courage, one’s endurance.

What is instructed is one’s understanding of the
paradoxes of life:
what starts with breaking down can end with building up;
what originates with loss can terminate with gain;
what begins in fear can come to its conclusion with love.


And then times of aching can be turned into times of healing,
as struggle gives way to awareness and acceptance,
as limitation yields to a new sense of freedom and openness.
When that happens,
those who suffer can become those who are renewed,
and those who grieve can become those who are transformed.
I believe this not only can happen but it does happen.
I believe it happens here as easily as anywhere.
I believe it happens now as readily as any other time.
I believe it happens with a design and with a purpose all its own,
and it is not apart from us, but we are a part of it.
And we are a part of IT.

~James E. Miller

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Another Milestone...

6/11/2014

 
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Tomorrow will mark another milestone in a long list of achievements that we have been able to conquer in the last 22 months.  We will board an airplane that will take us to Las Vegas.  It has been the one thing I have craved to do since the accident, and is also the thing I've missed the most.  Honestly, I never thought this day would come.

 Traveling represents freedom from the day-to-day routine of life. For me, it has always been exciting, and is the candy that feeds my brain with fresh images, new smells, and stimulating thoughts.  

As the reality of our situation set in over a year ago, the thing that made me the saddest was thinking I might not ever be able to travel far away ever again.  Seeing Facebook pictures of other’s vacations was extremely painful. I was envious and jealous to see how much fun I was missing out on.  

In the beginning stages after my husband was discharged from the hospital, we couldn't even leave the house. He had an electric wheelchair, but no van to transport him in.  The only time he left the house was if he had a doctor’s appointment. We called the “County Connection”-the van service for people with disabilities-and they would pick us up and drop us off.  Nothing was more humbling than the first day we rode in that van.

 We tried several times to buy a van of our own, but each time there was something that was keeping us from pulling the trigger—in most instances, the height inside the vans that we were looking at were too short to accommodate my husband in his chair. The vans that did accommodate him were so big that it would have looked like we were going camping anytime we wanted to use the vehicle.  Although we did a lot of searching, it just never worked out.   

As the days went on, we were feeling more trapped, and we needed to find a way to allow us some level of enjoyment outside the home.  We ordered a transport chair that you could collapse and throw into the trunk. One day my daughter and I decided to go for it- we were going to get my husband in the car by ourselves.  The occupational therapists taught us the technique for car transfers, but we had never actually gone through the motions by ourselves.   At this point in the recovery my husband wasn't able to give us any assistance whatsoever.  He couldn't stand, or lean over, or move any part of his body necessary to help us in any meaningful way.  We slid a transfer board under him, leaned him over, and with one person on the driver-side, were able to pull him into the car.  It wasn't pretty, and we fumbled a bit, but we got the job done!

By mid-January of 2013, the kids were back in school and I couldn't rely on them to help me with the car transfers, so I decided I needed to make a transfer all by myself.  It took a lot of strength and might. I don't know how I did it, but I did, and after I did it the first time, I felt so liberated!  We finally had some level of freedom, albeit a small amount, but freedom nonetheless.  

Slowly but surely, Vaughn's movement's and strength were coming back to the point where he was helping on our car and bed transfers.  This past Christmas, he hit yet another milestone: he started to bear weight on his legs and get into the car without a transfer board.

When I look back, and anticipate this trip we have been thinking about for so long, I can truly say that we have come a long way!  Now it's time for us to finally board that plane.  I imagine we may run into a bump or two, but when you put your mind to it, anything is possible!! 

"We Will Find A Way"

6/4/2014

 
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Less than two months after the accident, my family was separated from each other, each of us in different locations: my husband was in the hospital, my son was in Southern California to start his first year in college, my daughter rotated her time between home and the comfort & care of four wonderful families, and the dog stayed with a dear friend of ours.
 
As for me, I was the nomad, perpetually living out of a suitcase. I spent my days at the hospital, and at night I slept at either my parent's home or any one of my siblings-all who lived within 20 minutes of the hospital that is located in the heart of Silicon Valley.  Three nights a week I would drive back home, a two or three hour drive from the hospital, so that I could see my daughter and pick up mail. 

The pressures of managing the home; traveling back-and-forth from hospital to home or home to hospital; battling with our insurance company; filling out stacks of paperwork; fielding the hundreds of emails and texts from well-wishers; being patient advocate, missing my kids, and lacking any normalcy in my life was starting to affect me.  I felt like I was the captain of a sinking ship loaded with precious cargo, left to steer and bail water at the same time. 

I had kept up a strong front for everyone: my parents, my friends, my coworkers, and most especially my husband. The only two people who saw a glimpse of what I was feeling were my children.  I was taught that a parent should be strong for their children, that we shouldn't burden them with our problems. Yet, I felt I could expose my raw emotion to the kids.  At times, when I felt weak and needed to curl up on the floor to cry, they gave me my space and didn't judge. For, in addition to the bond as parent-child, we now were linked together by an unimaginable event.  They were the two people who truly understood what I was going through, because they were going through it too. 

I tried to shield my husband from the circus that was going on behind the scene. He had enough to deal with and I didn't want to expose him to all of the challenges I was facing on a daily basis. I tried to be positive and the face of hope for him, but some days were a struggle.

  One day, as I sat next to him on the side of his bed, he could see the sadness etched behind my smiles, and the weight of the world I carried on my shoulders. I couldn't fool him, for he is very perceptive and knows me like the back of his hand.  He looked at me with such softness and said,

    "Swede, I know you are doing a lot, and I wish I could help you. I know I can’t move my arms, but I still have a head. I can think, I have ideas, I can help you; just tell me what I can do for you. I’m here for you.”

   The floodgates opened and I cried, and cried.  All of the built-up stress, the pressure, the sadness, the despair came pouring out. As I cried, I laid my head on his chest and could feel the warmth from his body, and the softness of his skin. At that moment, I could feel his strength.  I found comfort knowing he was still my Swede-the person who could always soothe my fears and warm my soul. Although he wasn't able to touch me, or hold me, or hug me, I still could feel his love, and his desire to make me feel better.

    “Don’t worry Swede. We may not have all the answers, but we will find a way.” he whispered as my tears started to dry up. For the first time since his accident I felt an incredible sense of relief.

Ever since the day I broke down in the hospital, the phrase: “We will find a way” ( the subtitle to my blog) has become our motto for how we deal with daily challenges. It’s a powerful phrase that eases stress at a time when you only want answers.  You may not always have the answers, but just knowing that a solution lies around the corner and is in reach, is enough to lighten the stress from not knowing.

Fortunately, with any obstacle or challenge that litters our path, we find a way to overcome. In some cases the answers come from asking others.  At other times it comes from trial and error.  What’s important is that we work it out, and give it our best. We've never folded. We are still in the game, and it is our hope and plan that one day we will conquer.

God Bless Isla Vista.

5/28/2014

 
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 Last Friday night, at 10:00pm, I received a text message from my son, who is a student at UC Santa Barbara, and a resident of Isla Vista ("IV").  He said that there was someone out shooting at people in IV but that he was safe, inside his apartment with his roommates.  Feeling panicked I immediately called him and was able to get a few more details...a very important girl in my son's life relayed to him that she had just given CPR to one of her friend's, who had just been shot in the local Deli.  He believed the authorities caught the killer, and that perhaps a few people may have died. My heart sank, fearing it may have been innocent students who were killed.  I didn't realize when I went to sleep that night how terrible the scene actually was...
     The person who was shot in the Deli later succumbed to his injuries and passed away. Six innocent victims-their hopes and dreams gone, never to be realized.  Their parents---in agonizing, emotional pain, left with a wound of emptiness that will only dull with time, but never fully heal. The 13 injured, and all of the students of Isla Vista-their sense of safety & innocence shattered-left to pick up the pieces, and unite as they mourn the loss of their fellow friends.
    For all impacted by this heinous tragedy, the bell can't be unrung. The horrific details are imprinted on everyone's mind. The damage is done. We need to do all we can, whatever it takes, to protect our children and never allow this to happen again.  Changes have to be made, whatever they may be. 
    For anyone who has had the privilege to visit Isla Vista, it is indeed a beautiful college town, full of loving, caring, and wonderful students.  I hope for them that their vision of IV, and their college experiences will not be marred forever by the evil doings of one person.  
    For me, I am so relieved that my son is safe, and selfishly, am grateful that he was not in that Deli Friday night. In a few weeks the students will finish their classes for the school year. May the summer bring them comfort, peace, and happiness. 

God Bless them all!

Welcome to Hope Love Live!

5/22/2014

 
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      I'm the proud mother of two wonderful children, and the loving wife & caregiver of my husband, who suffered a catastrophic spinal cord injury during an ocean accident seven years ago.  I want to share our story and the profound impact it's had on our lives. I hope you will find my entries/blogs interesting, thought-provoking, and perhaps helpful should tragedy or hard-times every strike. 


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