November 20, 2013

No brain wave activity! The results told us by Dr. Copeland on the morning of November 20 2009. "No brain wave activity shown." When I asked in my stupid layman terms, if the results showed that you were considered to be flat-lined, Dr. Copeland looked at me and just kind of nodded. I wonder how doctors handle with straight faces, the insipid language we non-medical people will use, to describe technical terms or results we do not know, or understand. He may have felt I would understand the answer yes, to that question in my ignorance.

Looking back now, I see the additional questions; I could have or should have asked. But does it really matter now? He explained that there appeared to be a spark at the base of your skull (at the brain stem) and nothing more. The look of hope upon my face, I think, prompted him to look at your feet and hands and with a key rubbed it up each of your feet. I believe I saw one foot twitch, but he didn’t hold much support to the response. We discussed the event of you miraculously awaking, what consciousness you would have after so much damage that was done. Your quality of life, what would it be? I visualized you not smiling any more, and never being able to tell a girl she “looked nice” or greet another person with a hand shake and telling them “nice to meet you.” I saw my child laying there growing old; and never knowing what was going on around him, and how he would never be able to socialize with his friends again, or participate with Easter Seal. I thought how unfair that would be for you. How selfish for myself.

You were a miracle at birth, born with a malformed brain; and we concluded that what little brain matter you had, just could not fight the infection and the damage was complete and irreversible. So Dr. Copeland went and signed the forms declaring you “brain dead.” Thus November 20, 2009 became officially the day you died. Daddy George felt that day should have been November 18, 2009. I held out hope that a miracle was still possible, but it was fading. We still needed a second signature and we expected to receive it from Dr. Duong.

How do you feel when you are told your child is dead, but you are watching him and seeing him warm and breathing. You feel his heart beating, you can rub his legs and arms, and stroke his face and kiss him and it is just as if he sleeping. But no matter what I did, you did not stir.

Dr. Copeland was the first to suggest organ donation to us, but it had already crossed my mind, and I knew, before you were even pronounced dead, that doctors in the hospital we coming to test you. Why did a lung a specialist come to hear your lungs or a kidney specialist? I would just sit there and watch them. They would smile politely and check your vitals and smile again as they left. Could they only read my mind! I was indifferent to everything, but, how you were doing. Were you comfortable, could you feel pain, maybe you were trapped inside and they were all wrong! Maybe you just couldn’t communicate!

And then I would remember your eyes. I had seen them; I think when you returned from your CT scan the day before. Both eyes were fixed; and both eyes were cloudy. And I remember the test performed by  Dr. Copeland that told him your organs were shutting down. I have the words somewhere (the term he used), but right now I do not wish to look for it. It was shortly after we spoke (Dr. Copeland and me), when I saw one of your former nurses in the hall, she asked about you and your recovery. I told her what had happened and the results of the testing from Dr. Copeland. When she heard the "term" she said “oh yes, the organs are shutting down”… it validated what I was hearing and I was glad to have met her.

Monica saw the grim reaper (her words) and knew who he was before it ever occurred to me, walking back and forth in front of your room. We had told Camri we were considering organ donation. She told us someone from One Legacy was there if we wanted to speak with him. I smiled knowing Monica already knew that information.

Camri asked if we would like a priest come and we said yes. The priest came. We told him we were considering organ donation. He said that was wonderful and a beautiful gift to give to others (this made me feel better, although it had been years since I went to church; I wanted everything right for you). Last rites  were performed and he gave me the oil he used on a small tissue paper; he said “do not throw away, keep it or burn it, but do not throw it away.” I still have it. One of the nurses in ICU told me his prayer group would say a rosary for you that night … his “rosary group had already had miracles; he was sure a miracle would happen for you.”  I smiled and thanked him…and I  kept up the hope, but it was fading.

It wasn’t until 7:30 pm, that Dr. Duong came to sign your death certificate. He told us 2 signatures were needed and we informed him that Dr. Copeland had signed earlier. I asked how did this happen, it was not supposed to happen!”… He said he didn’t have an answer and he had not slept in 2 days going over and over everything, trying to find an answer. I thought welcome to my world, I hadn't slept either and everything was starting to blur.

Today, November 20, 2013, we will remember you as we always do on the  anniversary of your official death, with the launching of 31 white balloons (for your years on earth) and 4 pink balloons (for your time in heaven). So make sure to look to the sky at about 3:30 pm after Cash is out of school. Danny will launch his own white and pink balloon tonight when he comes home from school.

Each balloon  carries a tag with your E-Campaign address and this year I added your website address. Both sites tell about you and your beautiful life. They also offer opportunities for those who find them, to become and organ, eye and tissue donors in your memory. This celebration will continue each year from us to you; our wonderful son,  a beloved brother, and  a true angel who walked the earth for 31 years…and who is missed beyond words to express.

All my love, Mother

November 19, 2013

And now we are left to wait. Dr. Duong (your neurosurgeon) came in on the morning of the 18th and performed a spinal tab. Results showed no pressure build up or fluid buildup. He doesn’t know what happened. Your neurologist Dr. Copeland came in; he is without words as to the cause. Many doctors keep coming in and out and tests are beginning to be taken.

We wait, me for you to wake up, the others I do not know. I put your stuff toy next to you and put “I Love Lucy” on the TV. I have heard it said that the hearing is the last to go, so I keep talking to you. I tell you not to leave me, “to please come back” I hold out hope that you will. When your favorite shows are not on TV, I place headphones on your ears playing Bob Marley and Oldies but Goodies your other favorites.

I keep telling Monica how warm your hands feel, and I keep holding and rubbing them. We sit together all day and night on the 18 and the 19 and as word gets out, family and friends start showing up. Each time I go to stretch or take a break, I return and see someone new! I am usually gone less than an hour and I wonder how I didn’t pass them in the hall.  I will only leave when Daddy George is there to watch you, but your aunts are there and I give Monica time alone and well as family members who show.

And we wait; and wait, and still you do not stir. You do not make a noise. You do not flutter an eyelash. You do not move. You just lay there sleeping, quiet. Do you know we are there? Are you waiting for someone to come? I keep thinking the minute you hear Uncle Paul’s voice (he is flying in from North Carolina) you will awake. We had spent our last vacation in September with him and had such a great time. Uncle Paul comes… you do not awake. Maybe it is your father Steven. He is coming in as soon as he can from West Virginia. You must have missed him, is he who you are waiting for. Your dad arrives… you do not awake.

We are told 48 hours is the number. If anything is to change, it will happen within 48 hours. 24 hours have passed without change. You are taken to get another CT scan. I walk alongside your bed and the nurse has to use a pump to keep oxygen flowing in you. Every other time you needed a Scan or Ultra Sound  procedure, I, or daddy George, had to be by your side to comfort you and explain what was happening so you would stay still and quiet, most times the Dr. would need to give you medicine to put you to sleep; you would be scared and wouldn’t stay still. I offer and attempt to follow you in (out of habit) and this time, for the first time, I am told to just wait outside. I can understand, the nurse needs to be in my place to pump the oxygen, and I am unnecessary.

I have been at hospitals many times, I know to step away and not cause disruptions.  We are allowed to stay with you 24/7 even during shift changes. You happen to be in the hospital during a very bad flu virus season, so security is tight. When others are asked to leave their family’s room, your nurse Camri pulls the curtain around us, until everyone has left the ICU/CCU area, and then comes and pulls the curtain back open. I am grateful, every moment is precious; my sympathy for the other families does not extend to me changing the situation for myself.

And I continue to wait. It must be Jim, you two were so close. He truly loved you and you loved him. Jim arrives and you do not awake. Jim prays for a miracle and we both look toward you, and… you do not awake. I smile at him and tell him … “if only a miracle would happen”… I am starting to understand you may not be coming back.

Tomorrow morning will be 48 hours. It will require 2 doctors signing off on that decision.  Your sister and I will be with you all night, talking softly together, watching you. I am ready to act, just in case you open your eyes and want to pull that tube from your mouth. I continue to hold your hands, I enjoy the feel of them so soft, so warm. I will sleep holding them. Monica tells me later your hands did not feel warm to her, they felt cold and clammy. She said, the moment she saw you after we called her, she knew you were gone. I was blind to it all, I don't know if I didn't want to believe, or maybe you were with me, giving me the prolonged comfort of a little more time, before I had to say goodbye.   All my love, Mother

November 18, 2013

You stopped breathing!! How could it happen? We were right next to you. Your daddy George was watching you, he was just going to say goodbye to me and go home so Danny would not wake up alone at home, it was almost 5am, more like 4:40am, when I had just laid my head down at the foot of your bed stroking your legs. I was sitting in a chair pulled close. I don’t think my eyes were closed more than 5 or 10 min. We had just helped you up, and out of bed, to go potty, because you would not have it any other way. I was just speaking with you; trying to soothe you and comfort you…wishing the morning would come and bring in the doctors to see what was happening, why you were struggling. Believing if you could just sleep, you would awake feeling better and in good spirits, and this rough night would be over! It was four year ago on this date Nov 18, and I will always wonder... how could it happen?

When Tiffany (your ICU nurse that night) came in calling your name, I heard daddy George saying “oh no don’t wake him, he finally feel asleep”… and I sat up to echo his words, but she said you were not breathing!... the monitors told her before we knew. Those little plugs they put on your fingers to monitor your breath, those little plugs you hated so much and would yank off; and I would tell them you hated them and could they be removed on previous times, in past times, in other hospital visits not so long ago. That plug told her before we knew, you had stopped breathing; thank goodness the plug was on!

I looked at the monitor and saw you heart still beating; I looked at you and your lips were gray and I said “oh he is having a seizure”… I had seen that look before. I stepped aside and knew in my heart that they would give you the medicine you needed; and get the seizure under control. I remember thinking with the surgery and the headache and all that was going on, you must not have received your medicine, and everything going on contributed to a seizure! Sometimes to this day, I do think it was a seizure that took you from us. But, I don’t know, they say it was a powerful infection you were fighting!

You stopped breathing!… and it was rush rush rush! Code blue was called and I waited by the nurses station I heard someone say “do you want to call it” and that got my attention!  What are they saying?! And I heard someone say “his heart never stopped” and I thought, that’s right; it didn’t; the comment was crazy, a mistake; I saw on the monitor your heart beat going! And then Tiffany came out and asked if there was anyone we wanted to call… ‘no’….; and another nurse who remembered us from ER on the 16th came and said “you were in ER correct, ‘yes’… you have a very sick little boy and shaking her head with a pat on my shoulder walked away.

We entered your room and you were on a respirator. Tiffany said she placed a phone in your room; and asked again… “Are you sure there is no one you wish to call,” we looked at each other and I said ‘yes’...

Daddy George called your sister (because I was a weak and couldn’t do it, I didn’t want to hear her pain) and I called Marina (my dear friend) and asked her to pray for you. I sat next to you holding your hand, rubbing it and knowing in my heart that you would awake and want to pull that tube out of your throat, so I had better be ready to call the nurses. They say a mother always knows, well I am here to say that is not true! This mother never saw it coming.  

We planted this tree in your memory. It provides oxygen and gives breathe to all.  Big Daddy George and I will be planting his favorite flowers under your tree today in memory of you.  You are always in our thoughts and those who walk past our house see your tree. And hanging on it is the plaque we made telling everyone who this tree was planted for.  Never to be forgotten, all my love mother.

 November 17, 2013

Today I went hiking with your sister. I cannot speak about you to her very much; it is still too hard for her; especially about losing you. Each day, this week, I plan to do something in your memory and bring you with me in spirit and thoughts. I plan on capturing those days, 4 years ago, to remember you and to keep my memory correct. I do not want time to pass without documenting these important dates about you and what was happening. This blog has become my journal and my correspondence about you to others. Someday it will all be in a book, until then, your website is a wonderful place for me to write.

On this date four years ago, you had the surgery that was supposed to make everything ok. The problem I believe (or the first problem) occurred because your nurse was not advised that surgery would be performed that morning, Nov 17, 2009, and you had eaten breakfast. So your surgery was postponed until the evening of the same day. I always wonder if things would have been different if your surgery had taken place in the morning, when your doctors would have been more available, than they were that night.  As with so many things, we will never know.

You old shunt could not be removed, after 31 years the tubing and mechanism had fused to your tissues, so the new shunt needed to be placed alongside the old. The old tubing had not been sealed shut and your doctor believed your spinal fluid seeped out of the surgical site where the shunt valve was connected to the tubing valve. This is where your infection entered and how it traveled so fast to your brain.

Such a routine procedure we all felt. Seal the old tubing and treat the infection. I remember when you were brought out of surgery (around 8pm) and we were taken directly to a regular room, not the ICC/ICU unit as we had been taken the week before, after your first surgery. To me, this meant everything was great! I even told your sister not to come see you, because she was not feeling well. I truly believed you would be sitting up the next morning eating breakfast and within a day or two you would be coming home again.

But this time surgery did not go so well, you had a headache that could be controlled by the pain medicine given; and the headache got progressively worse. Your pain was so great! I can still hear you telling me your head hurt and then you were telling me they were blinding you! "They were blinding you"... did you even understand what you meant by saying those words? It was so frightening. Your nurse (Suzanne) called the doctor on call for you. He told her to stop bothering him and hung up on her!! I never got his name and I don’t know if I ever met him the next day. I often wonder if he thought about his behavior that night.  I wish your doctor Dr. Wielenga (your personal doctor) would have been available, but he was on vacation. Just another “what if” for us to endure for many years after losing you… We will never know if he would have made a difference? When your left eye became fixed, Suzanne set up an ultra sound test for you (which came back showing no problems, no fluid blockage, no pressure build up) BUT she insisted that you be transferred to the ICC/ICU unit. We were going back, and I was happy, because your care would be monitored. I called your daddy George and he came back to the hospital to help comfort you and support me. We called your sister and she spoke a few minutes with you and said she knew immediately something was wrong.

Your daddy George and I both felt if we could get your headache under control and you could rest, all would be better in the morning. I even was thinking how if your eye was damaged, what we could do to fix it, how we would go see your eye doctor and maybe you would need a glass eye or something. I determined if your eye was still fixed in the morning I would discuss it with him... how naive I was, so very silly of me when I think of it now.

I think we all just felt you were having a bad post-surgery. We didn’t understand and I didn’t think for a second, I would lose you. That you would not be coming home again. It never crossed my mind that night.

Always and forever with me, mother.

Four years ago today the infection came and you went back to the hospital. Antibiotics were given and you were in good spirits. I stayed with you all night and never left your side. Hopes were high, your shunt revision was a success and it never crossed our minds you would not come home again.     
       
Three years ago today, Landon came to us. The nephew you never met. Did you send him to us from heaven, knowing how much we would need him in our lives to continue without you?  He is so much like you in every way! It is amazing, if reincarnation exists, he would be proof of your return...but that is for GOD to tell us sometime later. It is bitter sweet, to be celebrating a new life, who turns 3 years today,  and mourning a loss so great as the loss of a beloved son.

Today we will celebrate Landon's birthday at "Build a Bear" and I will build a bear in your memory to donate to a child at Downey Regional Medical Center.  I love you and  miss you as always.

Each day this week, from November 16th until November 22nd when your organs were recovered, I will write a message of that journey. It is my grief to handle as I choose, and your story to tell. Forever all my love, mother.

Spoke about you at the Donation & Transplantation Symposium on Tuesday, October 15 at the Pomona Fairplex.  I did a power point presentation, but I am not ready to place the slides on your site as some of the pictures are very personal. I spoke to the medical professionals from various hospitals and transplant organizations. Over 1,000 attendees! Big group and I did it, yeah! All for you, I would never allow fear to prevent me from talking about you.

The attached is the agenda. "Brian's Story" was at 2:10 P.M. Might be hard to see. It is the last item with a check box.

I spoke with a wonderful lady afterward, who asked if I may at someday speak at her church. Of course I said yes and gave my card. I leave it all in GODs hands.  Right now my goal is to work on your book and poems.

It is getting close to your birthday and these days are very stressful. I know on your birthday, I get to remember that 20 days later it  will be the 4 year anniversary of your death. November is not my month. Until we meet again, all my love Mother

Our last vacation together, you are standing next to Uncle Paul in this picture.  We went to visit him in Washington. We rode the train from Los Angeles to Seattle, it took a day and a half, but we enjoyed the journey. You and I sat together, across from your daddy George and Danny. I brought plenty of magazines for you to read, which you rapidly moved through on the long trip. We were unsure how you would handle being on a plane, so the reason to take the train. The plan was that daddy George would test ride you on a small plane ride to Las Vegas, as a first step in preparation for future vacations across the states.

Such a wonderful vacation we had in Washington; we always had great vacations!  How could we have known that less than 2-months later you would be gone? I still find it so difficult to say you died; you are gone to me. To your sister you have never left and are continually away whenever she visits home. Such is grief.  On our own terms can we continue and on our own terms should we continue; it is a personal journey. For myself, I try to move forward, one baby step at a time.

Your departure from my life leaves a deep void that can never be filled. It is a hollow, deep, abyss swirling with wants and desires to generate your presence back into my life, and make purpose for the loss of such a beloved son! This site is one of those wants. I hope those who take the time to read it, these blogs or updates and posts, will feel your presence in their lives, will know a little bit more about you, your life, your specialness, each time I have the fortitude to write. Hopefully I will do better and more often in that regard, as time continues.

So many things to do; so many roads to travel; is it futile; is this mothers dream of preserving your existence into her presence without merit? I think not, but time will tell. So I continue and move forward one step at a time.  Love you deeply, miss you always!

“I don’t know,”…that was my answer when I was asked a few nights ago, what do you want to achieve? What do you want to happen? “I don’t know!”

What is it I am looking for? Why do I keep striving to complete so many things? What do the journals mean, the book, the website, the foundation? Even the ever commented upon Facebook page?

What do I want to happen? What am I looking for? I comment on his Facebook page; I am starting his book; I built him a website; I journal to him; I kick myself for not getting more done, not working faster or smarter. I depress those that love me and leave them feeling helpless, or lash out at them, because I don’t think they understand what I need from them to do what I need to do.

 I have thought about this question now, for the last few days, and have come to realize that what I want, that what I desire, that what I am trying to accomplish is one simple thing.  I want my Son BACK!  I want to bring him back to me! I want him back! So I talk to him on his Facebook page knowing no reply will come back to me, but I feel I am communicating to him and he sees my texts and laughs and understand.

So I write in his journal to tell him how much I miss him, and what is going in the family and with me, to capture the day without him here, so he can experience it with us and in this way he was with us.

I say the book is for my grandson’s so they will know their uncle Brian, but it is also for me to relive moments that existed when he was here, the crazy things he did, the loving heart he shared, the worries he gave me. By bringing his story to life I know that anyone who reads it will know he did exist and he still does. Just as all the characters in the books we read exist in our imagination and influence our lives: Atticus and Scout, Homer, Tess of the D’Urbervilles, or Harry Potter and Peter Pan. Character’s influential in changing a person's life, or magical and charming bringing them laughter and awe.

If he exists in minds of the reader, although I know he did in my life as flesh and blood, I can bring him back in some way and he is here for eternity, changing the life of someone, or giving laughter and courage to another. Is this crazy, am I nuts? What am I searching for?

I speak of him as often as I am asked and I love it because I am creating a new memory with him as I do so. So I share his story, no matter how painful. I Run/Walk because the day becomes his day. The pictures are of him and we all celebrate “Team Brian”…everything is centered on him; he is with us!

When or where does it stop? Do I want it to stop? Those are my questions, my cross to bear; no one can answer it for me. If something I am focused on achieving stops or get blocked, I will circumvent it and find another path to walk. I want him back and he is never coming back, I know that! But that does not mean I have to accept, that I cannot desire, with all my heart, that he be returned to me; and that, being a futile request, I will continue to create his breathing, living presence in my life until I am ready to say enough! I have tried enough.

Am I crazy? Am I nuts! Is grief so full of this choking endless suffocation and that the abyss looks to be the only release? I believe in what I am doing, it is what grips my fingertips and saves them from slipping and falling and releasing. So I continue this journey in my bid to immortalize him, so I can continue to feel the remnants of what is left of his existence in my life. Because I want him back and he is not returning to me!

Haven't blogged in awhile, doesn't mean I forgot your site.  I have such big plans for you and the direction it will go to honor your life and your memory. This is so new to me and I hesitate, afraid to make errors, mistakes, or to be inadequate. The fear I cannot make it perfect; trying to create a picture in my head before putting fingers to keyboard... this has caused the delays; and it is unacceptable. My whole purpose for starting this site for changing my goals and career at this time in my life, was to make these dreams possible. To fulfill the obligation I committed to you; you will not be forgotten and great things have been and will continue to be made possible because you lived! So let me feel your presence, breeze past me in the day, soothe the fear away at night and help to keep me moving forward...All things are made possible by GOD and he has directed me to continue, and with glad heart I will, until these fingers no longer move and the thoughts and dreams are quiet in my soul and then I will see you again.

"No matter your station in life, we all have the ability to touch the heart of another and make a difference in someone's life"~~ Diane Linares

That was my Brian, and That is why I walk.  He was not expected to do anything in life, but he did more than most of us ever will... He struggled all his life to do the simplest things, but always had a smile on his face and forgiveness in his heart. That is why I walk.  Through his organ donations, he may some day have a family, he may go to college, he may comfort grand-kids or  share loving moments with a cherished wife. All these things, the daily events we all take for granted, he would never have, but through his gift of life, ...in some small way, through the spirit of his soul attached, softly, on his organs donated... he may have them all!    That is why I walk 

I walk, because I am proud of him, because I honor him, because he will never be forgotten and he is a hero, a shining star. He has left a legacy of courage, generosity, love and joy! That is why I walk, because this wonderful person was my son and I want the world to know he lived and did great things. That is why I walk.

With friends and family we will celebrate and remember him at our 3rd year Donate Life Run/Walk in Fullerton CA. on Saturday, April 27th.. send us good wishes for a good day.