The posting below is the final post I did for CaringBridge.  It was my outlet for the first year but as I move this all forward, I want this blog to be an expression of our day to day lives.  The good and the bad about living with a survivor of an aneurysm that resulted in severe brain injury.  Some days I think I can do this and some days I don’t want to even think about the future.  Life can be unfair.  I feel that every day.  I also know life can be rewarding even living with a TBI.  You have to just pick your battles and hope that you are picking the right ones.  I see from what I wrote after one year and how different things are than I thought they would be that June 2012.  You can really see the change…..

Before June 13, 2011, our largest and most significant problems were some of the daily life challenges: long lines, grocery shopping, paying the bills, traffic, running a business, upkeep on the house, mow the lawn, homework, and the such. Now, I am consumed with medical references and research: Rehabilitation and the Brain, TBI, and all the possible sites on the Internet that will help me know how to care for Tom. As he continues his recovery, he could face some or all of the following: Seizures, post-traumatic epilepsy, hydrocephalous, insomnia, bladder incontinence, depression, hypertension, agitation, hypertoncity, clonus, spasticity, movement problems, impairment of his vision, communication problems, inability to solve problems, body temperature is not registering, cognitive problems, difficulty recognizing items, speech, loss of smell, loss of taste, severe sadness, perceptional problems. I have spent much of my time researching the internet to know how and what to do for any and all of the above. Finding doctors that will actually take him as a patient. I have lost a lot of sleep over the last three years. What are the happy endings? Are there any at all?   I feel so very lonely and sad a lot of the time.  For myself, for Sam and for Tom. There are good days, too, but still filled with uncertainty.

It has now been three years. Hard to believe what our life was before Tom’s brain aneurysm. All is so different now. Tom has survived an almost unsurvivable condition. It has left him severely brain damaged. I still have a hard time saying that.

I don’t think a broken heart really hurts. I think it is all the memories and the familiarity that you miss that breaks the heart. The change in the person, the change of their attitude and contribution to the family. And that does hurt. The “what if’s”, the “maybe’s of what it should have been”.   Missing what the plan was suppose to be. That does break your heart. The sadness and the depression that the person experiences, is the most heart breaking. It is not what you wanted for your spouse and your best friend.

 

“Faith is daring the soul to go beyond what the eyes can see”.

June 13 is now 1 year since Tom’s brain aneurysm and heart attack. I cannot and will never forget seeing him in the ICU. The months of praying and holding hands. So hard to believe that it has been a year and how different our life now is. I am sad and happy all at the same time. Sad that things are no longer the same, happy that he is with us, happy that we are making progress, sad that some things are not changing, or getting better. However, it could have been so much different. There is so much we have learned, so much grief, many tears, life lessons learned, life changed, frustration, happiness, smiles, hope and joyfulness that he is with us.

First and foremost, as I begin to write this, I must first thank those that were there immediately to help us. Alice….from the moment I connected with you that day, you did not hesitate to get to the hospital and make sure that Tom had someone there until family could arrive. Thank you from the bottom of my heart for your time, caring and holding his hand. Craig…I know this changed you forever. Helping Tom and Sam that day, can never be forgotten. Thank you Sharon for driving me to the hospital safely. We didn’t even know where we were going or what we would learn, but I couldn’t have gotten there without you. To my dearest Samantha…your timing was key to saving his life. Thank you for wanting to spend the day with your Dad…for remembering your 911 training; …had you not been there and reacted so quickly, all would be dramatically different for the rest of our lives. You are his savior and his Angel. Mary…thank you for taking Sam to school each day so I didn’t have to take her in my pajamas. To my family and Tom’s family….your support has been so important. Although mine is farther away, I know you are there if I need you. Thank you Tony and Pat for spending your summer with us, unexpectedly. Getting through the first few days and the months ahead was challenging and could not have been done without those of you there holding hands. To his doctors and incredible ICU nurses, they certainly are doing their job for a reason. I don’t know how they do what they do. They were honest, encouraging and so caring to Tom. To those I will never know their names, the person who volunteered their seat on the airplane to allow me to get home; my cab drivers that I forced to break the law, to the first responders, the Poway Fire department and paramedics. To Dave and Sue Cornish who have provided unending support and medical information and staying with us when in need, being kind to Tom and protecting his dignity. Molly…thank you for taking Samantha and Lucy and keeping me organized…Lamborghini Dave….you always were there early in the morning checking in on Tom. I felt relieved seeing your yellow car in front of the hospital. Thank you to all our friends, hotel friends, and additional family that provided food, support, helping hands and prayers and the COUNTLESS friends/acquaintances that have helped beyond our expectations. We will never forget your generosity. Those of you that have read, and provided comments and support through CaringBridge, I so much appreciate your positive support and encouragement. It has helped me get through my days, the good ones and the tough ones this entire year.

“All great changes are preceded by chaos”…. Deepak Chopra

Some of our lessons on traumatic brain injuries:

You cannot ‘hurry”. Tom cannot, Samantha cannot and I cannot. Tom’s brain will just shut down. And you cannot hurry life. It will go at its own pace. And, it is better to set your pace. It is better to go slow. You cannot hurry a brain injury to recover. It isn’t a broken bone. It cannot just heal.

Simply taking a shower will require a nap. It can be too exhausting.

When you do take a nap, you are convinced that it is the next day. There will not be a person anywhere than can talk you out of it.

Feeling “numb”is normal. It may feel that you are just watching the world go by. That you are not actually a part of it. You are…just in a different way. That goes for Tom and I.

Talking too much, actually makes you nauseous.

At times….you measure time based on “before your brain injury” and “after your brain injury”.

Not to smell like a hospital is priceless.

Every pain staking minute of therapy and recovery is worthwhile. The “silver lining” if you will, is ALL OF THE MOMENTS OF LIFE Tom didn’t miss out on, thanks to his good fortune, his daughter and the fortune of surviving the odds.

Life is unpredictable. You cannot make a plan for this part of the journey. This is a journey you could not predict or plan for. This journey of recovery is not free but it will not cost you a cent. It will cost you in sweat and tears. Recovery may seem far away at times, and sometimes impossible. Days will come when you will know that there is more you can do instead of things you can no longer do. When you are well, when the pain subsides, you will know that you can do more of the things you dreamed of. The definition of a survivor is not someone who just keeps breathing, but who, with the help of others, works to achieve a new way of living a full loving life. That is what our ultimate goal is. That is what Tom and we look forward to.

I will end by saying, that Tom is a miracle of survival. We are lucky to have him beaten the 15% odds of survival. He is a walking, living miracle, no matter how difficult it has been and no matter how difficult the future is. We are together, Tom, Sam and I. We appreciate each day, are thankful for his recovery and pray each day that life gets better and easier for him. It is difficult, challenging, for us all. But, it has been a privilege for Samantha and me to care for him. That is what you do as family, and what you do for those you love. You made a promise and it is worthwhile to keep it. It is our privilege to help him, to guide him and to encourage him to work hard to gain strength, to try harder each day, to not let him quit…even when quitting is so much easier. To not let him get discouraged and to make sure he knows he has much to get well for. To understand what a brain injury can do to you and to allow time to heal and to be more generous with our time and patience. To give him space, to let him make mistakes, to do embarrassing things, to not know and to not remember, and to be OK with that and to hold hands and work together. Maybe not remembering can be a blessing…depends on how you look at it.

I love this quote: “What lies behind us and what lies before us are small matters to what lies within us”. I have learned what does lie within us. It is much more that I thought.

And…lastly, I would like to know…where is the Fricken’ lemonade?