“The Prince of Unconditional Love”

He taught everyone he met
His lessons were absorbed unconsciously
Diffused to his subjects by him, absorbed like osmosis from him.
He taught strangers and family alike.
There was something special about the The Prince.
Very special.
It was more of an effect than a sense.
He had inherent knowledge that would take others a generation to learn, if ever.
He had natural wisdom in the area of love.
Where most of the rest of us floundered.
His qualifications were from nature.
He held no certifications or advance degrees.
His skills were not acquired from classrooms.
You maybe couldn’t even call it a gift.
An inheritance maybe.
Inherent.
He created instant fans and converts.  A checker at a supermarket.
A clerk at a clothing store.  A new friend of family.
Invariably a quizzical look as they tried to calculate him when they first met.
Followed shortly by a smile of relief and love when they did.
And then he’d move on his merry way.
And Advice, Advice was harmless, sincere, well-intentioned, and frequent.
“take care of yourself” “be nice to your wife” “ treat everyone with respect.”
He didn’t care your looks, your weight, or your pocketbook.
And if you had a pulse, you were pretty much welcome to join his club.
He had no limits. At least none that he was aware of. What you saw is what you got.
No filters, no agenda, nothing held in reserve.
He was a people person. And every day was a new adventure.
Each person he saw or met was like a longtime family reunion.
Everything was fresh. New. No day after day dreariness. Or obligatory Repetition.
And little trepidation.
“what are we going to do for lunch?”
“what am I going to wear today?”
No. He’d eat what there was and it was good. He’d wear what he had and looked good in it.  And feel good in it.
He had work to do.
He had a higher purpose.
He worked his magic every day.
No one suspected he was creating his own personal opus.
It was effortless to him.
It turned out the teachers were the students and the student was the teacher.
As is wont, the bittersweet aspect was that, unfortunately, the lessons weren’t realized until school was out.
But all that were touched realized the Prince’s lessons stuck.
Too late they wished for more.

50 Team Brian Members walked in your memory at the 2014 Donate Life Run/Walk event this year. I am late in posting. After the last post with the loss of your heart recipient I had stepped away from writing and got a very severe case of writer block. But now I am back.  I am ready to continue. I have so much to say and catch up on that it will take the form of several Blogs before I feel equal to saying we are okay. The picture below is your family and friends (not everyone is pictured)... we all love you so much and I am so grateful that each year they come out and join us.

Not only did you have 50 Team Members, but in your honor and in your memory we raised over $4,000 in fundraising! How wonderful! How special you are. You are doing such great things. You brightened our world while we had you and you continue to make the world a better place after you have left us.  I miss you so much, and when I look at your smiling face on the placards and on our buttons and t-shirts I think that I am the luckiest person in the world that  GOD choose me to be your mom. Your whole family is greatly blessed because you came into our lives. Do you see us all hugging and smiling and leaning into each with joy of celebrating you? Celebrating you! It was your day and your memory and each year we will do it again and again. Never to be forgotten. Always to be so proud of you. Grateful to call you ours...  I will make another post soon my son, a special one from your Uncle Joe. Until we meet again, all my love Mother.

We lost her. We lost your heart. We lost the chance to hear the beat of life pumping in the chest of the child you saved 4 years, 3 months and 3 days ago. A part of you will be buried with her, some place I may never know. While she lived, I could believe that someday you would come back to me (just like that movie, I could never watch). I wanted to hear your heart so desperately. I wanted to place the stethoscope on the chest of that child (whose name we just learned is Samantha) and hear the beat of your heart one more time. How I clung to the hope of that day opening up for us.  How desperately I wanted to return the words you used to say to me, when you would lay your head across my chest… “I love you mother, I love you so much,” except now mother would be replaced with Brian.  Now that possible dream, that goal, that chance blessing, is gone forever. We lost her. We came so close to finding her, yet fate intervened. I will never understand why; but this chapter in your beautiful life is closed forever.

When your aunt heard the news, she told me that your heart is in all of us, and will always remain in the hearts of your family even though it is beating no longer here on earth, that we did not lose your heart, it still remains in us. She was offering me consolation and comfort and I greedily received it; but my pain could not be eased. Not now, not for a while still.

I cried, Monica cried, Big Daddy George cried, your family and loved ones cried with us, for us, for you and for Samantha. It was as if we lost you all over again. It brought back those early days, the shock, the denial, the hope that I would get a call saying your heart had been able to be passed forward to another recipient. Maybe it was all a horrible mistake and Samantha was still alive, still living life through the gift of your heart… maybe… but no she was gone. She had died.

This time the grief stages went through us fast, all these emotions raging through us all once again. And the biggest question again to deal with. Why? I have been thinking a lot about this and have found only questions; not answers.  After waiting all these years for the one letter I wanted so desperately to receive, to have only 3 days later, the scabbed, stitched and stretched scars across my own heart, ripped opened again, was almost unbearable.  I had thought you would grow up with her; that you would live a long, long, life with her; as if your gentle spirit was moving alongside hers and together a destiny was formed.

Maybe I will hear from her mother, Connie… funny she also calls herself “mother!” I want to hear about Samantha, who she was, what she liked. I want to know Samantha, because you knew her for 4 years and you chose her, to hold onto your heart.  I want to hear that she lived fully these last 4 years with you and that she enjoyed life. We cheered so happily when it was told to us that a 12 year little girl would get your heart!  We said, “That is why you left us” … you knew she needed your heart and we knew you would be pleased. I want Connie to know that I wished your heart would have given Samantha more than 4-years.

I think being a donor family, is probably one of the hardest grief journey to walk. Everyone in our family, who has died before you, left nothing behind but memories. But you have left parts of yourself. Maybe as a donor family, we just don’t fully say goodbye to our loved ones. We love to believe and even cling to the joy that our loved one still remains alive, in some small way attached to the soul of those they gave life to, and to those whose lives they enhanced. I want to believe it too, and I have written it as such and have spoken it as such. It is that belief that has sustained me all these years.

They say a person will grieve for the amputation of a limb and I am left to wonder, are we the sum total of all our parts? Or are, our individual parts uniquely and equally the same as the whole? I grieved for your heart and the death of Samantha, as if it was you! Will I do it again, for your lungs, your kidneys, and your liver? Maybe now that I have experienced this great loss, I will be better prepared for it the next time. Maybe I just wanted to see with my own eyes, and hear with my own ears, and touch with my own hands, what you had done for another human being, before you left this world and this missed opportunity was a thunderbolt to my senses.

As a donor mother, who never saw you in death, never saw you take your last breath, never saw your heart stop beating it is something I need to realize and accept that such an opportunity may never present itself to me, no matter how much I desire it. You did die on November 20, 2009. Through the miracle of medicine, your organs which could no longer do anything for you, replaced organs no longer working for someone else. Maybe it is as simple as that?

I didn’t grieve, when your pancreas was taken for research? Why, because it was no longer a viable part of you. It left this world when you left it. But your 6 donated organs have stayed alive in my mind, as they have stayed alive in the bodies of others, and as such, in just as powerful a way, you remained alive to me also. I have heard it said from other donor families…”my child still lives;” and although I could never intellectually accept that premise, I too smiled and welcomed the thought as consolation for losing you.

I now think of Connie and what she is going through. Four years ago, life must have looked so bright and now it is must seem so bleak and sad. I ache for her, knowing how the loss of her child will forever alter her life and knowing nothing will ever be the same again. A “new normal” will be her future for holidays, for birthday’s, for every single day for the rest of her life. New anniversaries will be set in the calendar to remember and honor the passing of her beloved Samantha. She will try to remember the minutest things, try to capture and hold onto every memory she ever had of her, every word she ever spoke. Seeing her ghost dance across the hall and setting a place for her at meals, only to remember, no she is no longer here and never will be again. Not washing the last clothes she wore to keep the scent of her as long as she can. And then, thinking, someday I will need to pack up her world, but also thinking no NEVER, I will leave everything as she left it. And questioning why, why, why? Why did she get only 4 more years? For what purpose did she go through all this? 

I used to say, I knew your heart kept beating because your Timex watch kept ticking. Although I have never wound it, or replaced its battery; and it sits in your shadow box, it still keeps time. I went to look at it when I got the news that Samantha had died, expecting to see it stopped? But it hadn’t. Then I thought, maybe your heart was passed forward and that is why it is still ticking, but I don’t think that is possible. So now why, what theory can I produce for the watch, still rotating it’s second hand across the face of your watch, still keeping the correct time, although I do not touch it? Maybe it is just simply telling me that time moves forward and nothing more.  

We are trying to come to terms with the death of your heart recipient, but we still have our set-backs and the anger is still so deep right now.  GOD only knows the purpose of this journey. GOD only knows the answers to the whys. Where do I go from here? What am I supposed to learn? I felt vacant and sad for many days, and then I just vacated myself. We are trying to heal. My heart is aching, another piece of it removed is now waiting to be healed over and have the bleeding stopped. Only time will give me that.

I do know I want to do something in memory of your beautiful heart. It has died and I want to have a service for your heart; as weird as that may sound to others. I need to find a way to say goodbye and accept it is as another part of you gone forever. How will I do it? I don’t know. What I do know is that flowers will be planted under your tree in Samantha’s memory. We may place a rock, craved with her name on it, within the flower bed. At the Donate Life Run/Walk we will have flying over your area, a pink heart balloon and we will all wear pink arm bands or something special on our persons, in her memory. And as we walk we will remember you and we will remember her as the keeper of your heart.  Maybe these things are all I have to do to honor the gift you gave her; and the wonderful years it gave Samantha and her family. Maybe then I will find the way to heal and continue.

All my love my son, please say hello to Samantha and give her our love. Until we meet again, Mother

Well the Christmas season is over. The holiday complete for another year. Year 2014 came roaring in with the whole household sick with the flu. As such, closing down Christmas this year brought us many weeks into the New Year.  This was the first year we decorated the full house; the first year we bought a fresh tree again; the first year the old ornaments that we had hauled out each and every year before your death were again displayed.  I had often wondered at what point would I do it again; at what time would Christmas come back into the house since you left us in 2009; at what point would I say it was okay; we can celebrate the holidays and look at your childhood ornaments again?

I looked at the pictures displayed by my Facebook friends. Their decorations with Santa Clause hats on pictures of their lost loved ones, with tinsel lying lovingly across memorabilia they hold dear in their hearts. I looked at the pictures of their beautiful trees with twinkling lights, and special ornaments, and I thought, can I do it this year? Can I be in that same place of celebration and joy? At no other year had this question occurred to me; I was not ready and I knew it; but this year… this year maybe I was.  
A grieving mother once said…“her child did not die, so she could be a bitter person; but so she could be a better person.” Did I have the strength to be a better person, and finally put away the bitterness I have sucked on for the last 4-years? I wasn’t sure. When I would talk to daddy George about it, he would look at my face and look in my eyes, seeing the sadness glazing over them, and say “not this year, maybe not just yet.”

But more than all these emotions and thoughts, it was Daniel who made the decision for me. Not the grand-babies, although I wanted them to start seeing our house full of joyful spirit. But Daniel our son, your brother. Just as I knew we needed to rearrange the bedroom that you both shared for so many years, to accommodate his needs and help heal the pain he must have suffered each day and night, seeing your empty bed across from his; having your clothes still folded in the other half of the dresser you both shared; the closet still housing your shirts and jackets. Your trinkets, watches and chains still dangling on your half of the dresser top. That time, to close your memories out of your bedroom, came because we needed to think of his health, his life, his grief.  Now it presented itself to me again.

Daniel is 19 now, he was 15 when you died; and soon he will be leaving home and moving on. What if my decision to decorate the house and celebrate this holiday again, occurred when he no longer lived in our home? What if he came back to visit and saw decorations up, that for years had laid packed away, and untouched? I couldn’t allow that to happen and I knew you would agree. He deserved a full celebration and he has deserved one for a while now. I knew in my heart what we should do and I planned that it would be done, yet I still delayed the steps needed to make it happen. But finally, one morning, a week before Christmas, I went into his room and saw a little Christmas figurine displayed on his desk, a Christmas stocking hanging from his dresser, and a Santa bag sitting near it. I needed no more time to think, and I told daddy George it was time to get a real tree; it was time to bring out the decorations; it was time to be better.

What a coincidence that evening, when Danny was picked up from school, he said to his dad …“can we just get a small tree this year?” The tree was already at the house, (daddy George didn’t tell him) and it was one of the most beautiful trees we have ever had! So funny because each year we would all go in search of the perfect tree. We would pull the tree out, that looked about the shape and size we wanted, and daddy George would shake it out and turn it around while we looked at it, deciding if this was the tree for us or not. Then I would hold it for daddy George to look at, twirling it this way and that before we would determine nah… not the best one and on to another. Sometimes we would have two trees displayed and circling at the same time. You would put your hands on your hips and look the trees over and always say they looked nice.  Danny would just get impatient and say any of them was good enough. Finally one would be agreed upon and brought home to be trimmed and turned, making sure the better side was forward.

Well not this year, this year daddy George went by himself with instructions to just pick up a real tree, and this year it was the perfect tree! No trimming, no turning, each side was the best side.  We decorated the tree with all the ornaments that had been packed away for 4 years. The handmade gold sprayed macaroni shells, the 5th year school picture glued to a paper tree, the angel with your name and date etched across its wing. We put up the decorations we bought the year we first married, the childhood ones your sister and brother had made, and the new ones we got for Cash and Landon (your nephews).  The hardest to hold was your stocking with your name stitched across the fold.

We still decorated your tree, the one we bought the year you died. We decorated it with the new ornaments we had purchased for it. Ornaments without special meaning at the time, although now 4 years later they are valued by us as the ornaments we got the year our grief began and hold a special place for us…funny how that occurs whether you intend it or not. Your stocking was placed by the candle I light each day for you. I placed ornaments next to your urn. I made another special ornament, as I have done each year, filled with a personal message to you. (Someday I will read them, or not.) Lights were displayed inside and outside, the house looked really nice and had a really cozy homey feel to it. I felt you were with us this year, I felt surrounded by your presence. Maybe it was seeing your name on your stocking and ornaments; maybe it was reminisces about previous Christmas celebrations with you. When I would unwrap something to display, or hang, I would think back to the times you were with us, and your smile and the joy we shared.

The pain was not as great as closing your memories in your room, but it was a passage and a journey we needed to travel; and now that it is over I can reflect back and think about it, and all that it meant for me, and this grief journey I continue to travel.

We just took everything down last week; it took a few days to pack up and re-arrange the house back to pre-Christmas, and it is bittersweet. It was for a short time a moment back in time for us; and maybe that is the object of ornaments and Santa Clauses and candy dishes and Christmas towels and stockings. When we purchase them, or our children make them, or we receive them as gifts, they capture that time and space for us; and once a year by bringing them out and looking at them, and finding the best place on the tree, or counter or shelf to display them, when we string the lights and hang the wreaths, we remember past Christmas’s and all the memories and joys held in those past times; who was there; why we bought that item; who give us that gift and when we received it.

Just as your tree is now a memory of the year we lost you, and the sadness and heartache we had and still have, we cherish it and remember why we bought it and who it belongs to. Now this Christmas is over. We have packed everything back up with care and love, tenderly wrapping each item and placing them in their respective boxes. And when this New Year comes to an end, we will have the courage and strength to bring it all back out again, to open again our hearts and share the memories of our family and friends and share the memories of you in heaven, remembering and giving thanks that we have those memories to share.How blessed we are! God blessed us with 31 Christmas's with you; it is time to be better.

My husband and I were honored to do a Floralgraph, for another donor family, at the Donate Life Rose parade decoration site on Sat. Dec. 7th. Our young man, Fernando, was only 17 years old; and was the victim of random violence. Too young; too soon! In death he saved 4 lives. His family, in Arizona, will complete the Floralgraph in his home town (we do everything but the brows) and then it will be returned in time for placement on the float. I do not wish to provide more, as the loss of a loved one should remain private; it is for the family to decide if they wish to share.

This was our 3rd Floralgraph. It was a cold day in Pasadena; it was also a very draining day emotionally for us! Yesterday, I could not get up and out of bed until it was time for church in the evening. It appeared to me so many of the Floralgraph's were children (many just babies!) or maybe I was just drawn to their pictures most often. The day, so cold, rainy, and gloomy was also, in my opinion, very appropriate; it was visually sad to see such loss displayed across the tables and stations where we and others worked. Yet the tribute, the words the families wrote about their loved ones, and the joy and excitement of the family members who could be there, decorating their own loved ones Floralgraph, remain most cherished in my memory. 

My son was honored with a Floralgraph on the 2012 Rose Parade float (his Floralgraph was sponsored by the “Joseph Helfgot Foundation.” His wife, Susan Helfgot, wrote his story in a book called the "The Match." Most Floralgraph’s are sponsored by outside organizations, hospitals, and private foundations; someday I too hope to sponsor a Floralgraph in Brian's memory. But until then, we volunteer our time, our heart, our love and our emotions in tenderly putting together a floragraph for an out of state family, who we hope will find comfort in receiving it.  

We take care to make the eyes and smile exact as possible, and hope to always leave the countenance of the face as true to their picture as possible. It is not easy, and it is very stressful. We leave a part of ourselves with each Floralgraph; and take a part of that person's story and life with us when we come home. I still carry the story and love for the young lady, Kristen, whose Floralgraph we did last year. She had died from a fatal asthma attack while on vacation. She was 28 years old and lived in Michigan. We met her parents at the Floralgraph brunch that year. We hope to meet the parents of Fernando at this year’s brunch.

I know the news and media coverage at this time is all about Paul Walker and Nelson Mandela.  I believe we all must feel the same, in that we would all want our loved ones so honored, remembered, and shared with the world. We do not want them to be forgotten. We all wish them to be recognized as the special, remarkable person they were in our lives, which the world did not see. But after the parade, after the decorations, ceremonies and memorial celebrations, one person is still missing from the home, a void remains in the group, and the hole in your heart is still there. As time moves forward, those who will face another holiday, birthday, or just another ordinary day, with a vacant place at the table, will be the family and friends who knew and loved them the most while they lived, celebrity or not.  

I have my son's Floralgraph hanging in my house, it is beautiful, but it is seeds and organic materials...it is not my son. His memory, his warmth, his beauty, his story remains in my heart. It is my duty to carry his story forward. His was not a national story or a world event. He did not change a nation, nor did he have world-wide fame and fortune with thousands of fans mourning his passing.  Tributes did not come forward from across the lands, accolades and songs will not be recited or sung in his memory, movies will not be made about his life, nor novels and stories written, unless by my efforts alone.

This year, on the anniversary of my son’s birthday, and the 4th year of his death, only few family and friends called me to acknowledge the dates, and ask how I was doing. It is understandable to me now, after my anger at the inconsideration soon following into sadness gave way… because “life goes on” as that horrid saying goes, “life goes on.”  Everyone has their own personal world of rewards, tributes and special moments with dearly loved family and friends. They are posting accolades about them, and sharing memories with them, at this moment…today…this hour.  Life goes on, but for us, be it the loss of a child, spouse, parent or sibling we remember yesterday; because yesterday is all we have left of them today. 

As emotionally draining as Saturday was, my husband and I are grateful we had the opportunity to help be a part of giving something back to Fernando’s family; not just the Floralgraph, but that we read his story, and we have placed him in our hearts; and that Fernando (their beloved son) will always be remembered by us and his story will be shared. Sometimes in grief that is all you need to get you through another day.

November 21- 22, 2013

The day opened up with you lying flat on your back. Your blood pressure had started to drop and they needed to keep you level. I was informed that if an emergency situation occurred, you would be rushed to the operating room and they would probably not be able to save your heart or lungs.

My journey now became that your organs would be recovered safely and I became the vigilant mom I had always been for you. “Your death would not be in vain!” Everyone who came to visit and say goodbye to you, had to wash their hands. If anyone so much as showed any sign of illness, they were not allowed in. I knew that blood work and tests could only go so far, and it would not be until you were in the OR and your organs were fully recovered would this journey be over. Your death would not be in vain, you would have a successful recovery. Nothing was going to prevent that from happening. I knew GOD would not have taken you from me for any lesser purpose.

We were asked if we wanted to know who your organs were going to and we said yes. When I was told that a 12 year old girl would receive your heart, I bursting with pride, went to the waiting room to tell your family. It made us all happy to know that a child would receive your heart. How appropriate that you my child, my little boy, my Peter Pan would be giving his heart to another child!

Everyone felt how lucky your recipients would be, to receive the organs from someone so pure and special as you; you who never had a cavity; and at age 31 still had your wisdom teeth; you who never drank or smoke; who was an angel among us all here on earth. You, to give life to others, when so many thought you would never do much in life. Whose doctors predicted would never even learn to rollover, much less sit-up, walk or even talk! You the Hero, the greatest of us all, were going to save others!

I remember being so tired, and your uncle John telling me to go home and get some sleep. No way could I leave you. I remember everyone giving me and Monica all the private time we wanted or needed; it was unspoken, but they remained in the waiting room and would come back to your room for a while and then leave you to us.

I remember Sylvia and Eddie (your daddy George's brother and sister) coming back and saying goodbye to you. Both of them having sat in the waiting room each day, all day,  since the 18th; never leaving and never coming back until the last moment and then they did, they came and said goodbye; and Sylvia commenting how warm you felt.

I remember Robert making your hand mold for us; and giving us a memory box from One Legacy. And how through it all you didn’t stir; you just slept; while One Legacy was doing their work, and testing your blood and matching your type; and locating those who were in need of your organs and giving families I may never know the good new; and reasons to hope and believe in miracles.

As the day rolled on and the evening of the 21st came, I said goodbye to Camri and Veronica came back as your night nurse. I apologized for the morning and she didn’t mind my behavior one bit. She would come in and check your vitals and keep adjusting your bed to regulate your body temperature, until daddy George took over for her and starting regulating you himself. It was funny and we would chuckle at him telling her, he had it under control.

Your dad, Steven and Aunt Teri would come and stay with you and I would try to give them time, but as the night grew longer I became more selfish; and I couldn’t leave you anymore.

My fondest and dearest memory was when the nurses moved you and all your tubes over to the side of your bed, so we could all take turns lying down next to you. This was my deepest and final wish to hold you one more time. To lie prone next to you, and wrap my arms around you like I did so many times before while you slept. It was me and your sister for an hour just taking turns holding you, and Veronica telling us to take all the time we needed; she would come in and check your vitals and then leave us never saying a word to disturb us. And daddy George came in with Junior and they both got to lie next to you and hold you and say goodbye to you. In my mind’s eye, I still feel it; and see it; and I will be forever grateful to have had that gift to hold you one final time. It is a memory so cherished in my heart. That is how I remember you warm, sleeping, peaceful.

And then to soon it was time to go. Everything was ready and we were leaving for the operating room. I was told that the medical team who had performed your shunt revision were the ones on call for your organ recovery surgery. I was told they were upset it was you, because in their short time with you, you had touched them. I remember one of your nurses coming by to say goodbye to you, and telling me you touched her heart as she placed her hand across her heart.  I thought how kind of her.

When we wheeled you out of your room, to take you to the OR, I grabbed one of the poles on the back of your bed, I think daddy George grabbed the other pole and as we walked by the waiting room all your family stood up and watched us go by, and then stepped out and followed us from behind. Aunt Margaret said it was like a parade procession. It is a beautiful vivid memory. I kissed you goodbye, daddy George kissed you goodbye, your father Steven kissed you goodbye and they were just about to take you into OR when I turned and said your sister needs to say goodbye. She doesn’t remember, but she had just crumbled to the floor. She said her goodbye and just sniffed you and sniffed you trying to keep your scent with her; I did the same. She laughs remembering the expressions on the doctor’s faces as she did so.

We waited at the hospital until all your organs were successfully recovered. “Most families go home and wait for a call from One Legacy when the recovery procedure is complete”… “I am not most families”.  It was a long wait.  Organ recovery is a long process.

Yes my son, your organs were all successfully recovered. We could not donate your eyes or skin because of the infection. And your pancreas was donated to science. But 6 organs were recovered and 6 lives were saved including the 12 year old child.  I had been vigilant to the end and was no longer needed by you. We left the hospital when they were taking you to the morgue. I didn’t have to see you again. I didn’t have to hold you again. I never saw you cold. I never saw your heart stop beating. I left the hospital without you and I would never see you again. You were cremated and remain now in a beautiful urn at home with us.

I remember that afternoon, it was a Sunday, four years ago today, November 22, 2009; I kept thinking of the mother of that child, and how I would be feeling if I was told a heart had been found for you. How happy I would be, how I would be calling my family and friends, telling everyone…“they found a heart for my Brian”…and knowing now you had a chance at life! I was thinking about that mother… and I wondered if she was thinking of me. Until we meet again, my love, my joy, my Brian, my son, Mother

November 21, 2013

Today is difficult, surprisingly so after what has already happened this week and what we were going through. Maybe because of lack of sleep, numbness, shock and disbelief, I don’t know. I guess it could be added up to all the above. We signed the papers. We had waited as long as we could in delaying Eric; but we had already agreed that we would donate your organs.

At first Monica said NO; and if she had continued to express her desire to say no, we would not have done so. But her delay did not last long. We were thinking of it as your decision. We knew it is what you would want, and we knew it the right thing to do. Wasn’t it I who had completed your California ID card and checked the pink dot for you?

I guess I didn’t think the day would come, when I wouldn’t be going with you. Or I thought, like so many others that it would be an easy decision to see that you had passed and no other option prevailed. This situation, seeing you breathing and warm; watching the monitor and seeing your heart beat across the screen, it was different. How could I let you go? By signing those papers, would they stop waiting for you to wake up? I was saying goodbye to my breathing child; and what if one more day made a difference!

No matter that 2 doctors had declared you brain dead, and by all legal and probably moral purposes you had died, this mother still held out hope that surprise you would open your eyes and everything would be brought right in my world again.

Yet you did not stir, and as the night of the 20th came to a close Eric was letting us know that he would be leaving and his associate Robert would be coming in. I thought what if Robert is not as considerate as Eric, because although your ID had the pick dot on it, an exception was made for us! You didn’t make that decision for yourself, I did, so the decision was mine to make and One Legacy would honor and respect my wishes. What if Robert argued differently? Did I really want to proceed all over with someone different who had not been with us already, who did know our story and who you were, and how much you meant to us?

So at the very last moment I said yes, and we (myself, daddy George, Monica and Junior) went into another room to sit down with Eric and sign the papers.  It was an eye opener. I never realized what could be donated. I had not an idea about tissue, bone, cartilages, skin! I had only thought vital organs were donated. I didn’t know that heart and lung transplants were very rare and only idea situations such as yours, made it possible; or that heart and lungs had to be transplanted within  6 hours, from donor, to recipient. We couldn’t say yes to bone, (someone told us bones were sold…not true! But at the time what did I know!).

We said yes to your eyes, because how lucky someone would be to have those big brown eyes to see the world with. We said yes to your skin, because we learned that cancer patients and burn patients benefited from this donation. We said yes to all your life saving organs, but to others we said no. Now 4 years later, knowing what I do; I say take everything from me. I would be honored to be of use to someone when I died.

“Most people go home to eat and/or get some rest after they sign the papers, because the next 4-5 hours a lot is happening!” “I am not most people” and I hate that phrase; NEVER say that phrase to me! I have never left you at a hospital at night without me; and I was not going to now! It was after midnight going into the 21st of November 2009. Everyone had left; all family and friends. Monica was persuaded to leave with Junior and go home and get some sleep. I could not leave. So daddy George and I stayed in the waiting room, thinking any moment I would finally be allowed back in your room.

I remembered after signing the papers EVERY thing changed and actions happened so fast as to cause me the most traumatic time since you stopped breathing. I knew that things would change in your room, and change does not do me good. I need to see the steps taking place in making a change. I had asked Eric if I would be able to come back into your room after every process or procedure was completed. He should have said No, but he said Yes.  Most likely because he knew I wasn’t leaving and I had explained how difficult it would be for me to see you, or your situation in your room, different from how I was leaving you. But it was over 4-hours  later before I could come back into your room and I just lost it! To be fair he had really tried to allow me back sooner, but everything was happening so fast on his end also. It couldn't be done. I was so angry and lashed out at everyone. Poor Veronica your nurse was trying so hard to get your room in order and I just placed my head on the foot of your bed and cried and cried... it was just too much this time!

I tried to sleep. I needed to rearrange my chair and position it close to your bed because everything had changed! I only slept an hour or two off and on. Camri your day nurse was back in the morning and I spoke with her about you and what had happened. How I always protected you and was so worried that you were being hurt or misused while we had to wait to reenter your room.  I told her how just because you were handicap and didn’t understand you still deserved all the respect and dignity as anyone else. She was the best, and she told me about her family who owned a group home for mentally disabled adults and that she understood where I was coming form. I needed to protect you at all times, it was my job.

She comforted me in a way no one could have at that moment or time, and I told her I was going to do something I never did before; I was going to leave you at a hospital alone and go home for a few hours, so they could get your room in order without tiptoeing around me. I asked if she would look after you for me and make sure your room and bedding were clean and you were comfortable and clean and that two chairs would be placed on either side of your bed for me and your sister to sit. I told her I was leaving you in her care and I knew she would watch over you, and treat you gently and with respect and dignity. She said she would; and she did.

When we returned, your room was bright and open. The chairs were where they were asked to be. You look peaceful, warm, cozy and loved, tucked lovingly under fresh warm bedding. Your stuffed animal was next to you. And you did not stir or make a move, or flutter an eyelid. You continued to sleep peacefully and your hands were still warm and soft to me.
Mother