Today I add a new post, a new blog for your website. Today I add a new chapter in our continued journey through your life and death. But I am not looking back in grief today. No, today I am looking forward, looking toward the future. Is it time? Yes, I can believe it is and that is good. I follow the paving steps as GOD lays them out in front of me. Certainly I probably, would never have paved this path for myself. Well maybe some parts; or most parts, but definitely not the path I traveled this last week. Then again, would I be writing this post if I had not traveled that road? No I wouldn’t. And this post is also important.
Today is a celebration. Through grief and sorrow, unbearable pain and heartache, a rainbow can appear and make you smile and believe. Help you reminisce about the positives and give you hope for more to come; such as celebrating a second birthday for someone special, in the same year, but months apart.
Today, 6-years ago, on November 23, 2009; your right kidney saved a young man’s life. He was 18 years old at that time, today he is 24 and he gave me permission to post some of his information.
Your recipient was born with an extremely rare condition called Senior-Loken Syndrome. Only about 150 cases are listed in the medical journals and in his State (Utah) only 2 other people have this rare condition. The most prevalent consequences of this disease, is how it affects the kidneys and the eyes. Doctors told his mother that by the time, her son reached the age of 18 he would need a kidney transplant, and at the age of 18, true to form, it is exactly what he needed. His condition has also caused him to become legally blind. I am told it is like looking at the world through the pin-hole sized opening, at the end of a straw.
He was actually the very first recipient of yours to send a letter to us and this holds a very special place in my heart. I have attempted to write about our first meeting in August in Utah, but have been delayed with writers block. Maybe this story was meant to be shared only after this week of deep sorrow. Maybe it was meant to be shared now to bring brightness and hope and a smile across my face and the face of your loving family, after such a tear-filled week.
Maybe it was necessary that almost 6 -years had to pass before we got the opportunity to meet; and that amount of time was needed, to enable us the ability to step back, and rejoice with him and his family the gift of life you gave to them.
When we received notice that your name would be etched on the Celebration of Life Donor Monument in Utah, we were so proud and happy. The Monument honors all donors with a Utah connection. And I believe his mother, must have been instrumental in getting your name placed on that Monument. Six hundred donors were honored that day. By letter I had informed the family that we would be attending the event. I hoped against hope that they would receive the letter and also wish to attend, but I understand how each recipient and donor family must do what is best for them. Lucky for us, they felt exactly as we did; and wanted to meet us, as much as we wanted to meet them.
When I was first introduced to your kidney recipient, the smile on my face became almost as big as the smile I always had for you. He was easy to hug. I could not help myself and kept placing my hand upon his arm or shoulder. I had to literally remind myself to pull my hand away so as not to seem so intrusive to his personal space.
I would ask him if I was crowding him; and to tell me if my hand on his shoulder was bothersome. He was so gracious and would say no it is okay, it didn’t bother him. I think he was just being very kind to me. I immediately felt protective of him and guided him across the lawn to the Monument where your name was etched. Daddy George was brimmed with tears, but funny I wasn’t; I would have expected myself to be crumbling in joy, but my joy was just beaming out another way.
I had brought pins of you, picture buttons from the Donate Life Run/Walks and Float decorations events. I think I had 6 different buttons and I started handing them to him, saying would you like this, how about this one; I eventually just gave them all to him, which he kindly accepted. I also gave him my donate life green bracelet and your website bracelet.
His mother kept telling me thank you. That you saved her son’s life, but she didn’t need to tell me such things. I was so grateful that we could see how your gift gave such joy to another family; and how your gift gave a young man one less difficulty to worry about. We had such an immediate connection with the family, which opened up quite a few amazing connections between you and your recipient.
I already knew by letter that his maternal family name is “Ellis” as your paternal family name is also Ellis. He and his grandfather Ellis were very close. It is sad to write that his grandfather just recently died, but we did get to meet his grandmother Ellis. She is a beautiful lady in every way.
You were both born with special needs and rare birth conditions. His mother, as I did for you, worries about him constantly, his care, his safety and his father keeps a keen eye on him. It is obvious how deeply loved he is by his family.
Of all the hotels to stay in at Salt Lake City, the one that kept coming up as I was looking to book a room, was The Little America, which happens to have a mural painting in the restaurant of his great-great grandmother as a patron; additionally his great-great aunt was married to the Hotel Founder. We captured a picture of the mural before we left, and I remember hearing a child in the restaurant saying look at those people taking a picture of a picture. If only they knew the reason why?
Additionally, which I thought was truly a sign from you, was the coordinates for your name on the Monument, Panel #19/Line #25 – my birthday is Feb 19 and when I told your recipient this, he told me his birthday is Mar 25! It couldn’t be more perfect.
We laughed and wondered at all this; was it ordained? Were we meant to meet? Did you foreshadow being his recipient, long before the 23rd of November? While this remained on my mind as simply remarkable coincidences, the other day, when starting this blog, I was thunderstruck as I recalled the words you said that night after surgery, on November 17, when you cried out “they’re blinding me; they’re blinding me!” I didn’t understand what was happening and thought the severe post-surgery headache you were suffering was blurring your vision, which could very well be true, but then again your kidney recipient is legally blind. Monica and I got shivers when we spoke about it the other day. I think I will leave it to the mystery and Grace of our Lord.
Your kidney was the 3rd try for your recipient. On the way to the hospital, he told his mother, this one will be a match. And it was. A life was saved. Two families met and are united together in prayer for a long healthy life for this young man. We consider your recipient family our family, joined together by you.
Hopefully we will be in Utah next spring/summer and the family may be out here in April. I know your hospital would like to get us together for a flag raising ceremony; I need to pursue that with the family. But meanwhile, we stay connected through text and Facebook, and little by little our families will get to know each another better. Our center orb is a young man, fighting his disability and youthful struggles, trying to find his way, to the life he wishes to live. I know you will always be watching over him. And I will always keep him in my prayers.
As a doctor told me once…‘you know some people believe in miracles’ I have come to believe miracles do happen. When so many thought you wouldn’t do much, you always served a purpose in life. To make us smile, to make us laugh, to help us see the simpler joys in life, to love unconditionally and forgive easily.
Now that you are gone, I share you with the world. When you were alive I kept you to myself, because I felt it was the only way I could protect you. But, I was wrong. You touched lives without my knowledge while you lived and continue to do so today without my participation. Your Mission Statement below could never be truer than it is today. Love forever your Mother
“No matter your station in life, we all have the ability to touch the heart of another,
and make a difference in the life of someone else”
Today is a celebration. Through grief and sorrow, unbearable pain and heartache, a rainbow can appear and make you smile and believe. Help you reminisce about the positives and give you hope for more to come; such as celebrating a second birthday for someone special, in the same year, but months apart.
Today, 6-years ago, on November 23, 2009; your right kidney saved a young man’s life. He was 18 years old at that time, today he is 24 and he gave me permission to post some of his information.
Your recipient was born with an extremely rare condition called Senior-Loken Syndrome. Only about 150 cases are listed in the medical journals and in his State (Utah) only 2 other people have this rare condition. The most prevalent consequences of this disease, is how it affects the kidneys and the eyes. Doctors told his mother that by the time, her son reached the age of 18 he would need a kidney transplant, and at the age of 18, true to form, it is exactly what he needed. His condition has also caused him to become legally blind. I am told it is like looking at the world through the pin-hole sized opening, at the end of a straw.
He was actually the very first recipient of yours to send a letter to us and this holds a very special place in my heart. I have attempted to write about our first meeting in August in Utah, but have been delayed with writers block. Maybe this story was meant to be shared only after this week of deep sorrow. Maybe it was meant to be shared now to bring brightness and hope and a smile across my face and the face of your loving family, after such a tear-filled week.
Maybe it was necessary that almost 6 -years had to pass before we got the opportunity to meet; and that amount of time was needed, to enable us the ability to step back, and rejoice with him and his family the gift of life you gave to them.
When we received notice that your name would be etched on the Celebration of Life Donor Monument in Utah, we were so proud and happy. The Monument honors all donors with a Utah connection. And I believe his mother, must have been instrumental in getting your name placed on that Monument. Six hundred donors were honored that day. By letter I had informed the family that we would be attending the event. I hoped against hope that they would receive the letter and also wish to attend, but I understand how each recipient and donor family must do what is best for them. Lucky for us, they felt exactly as we did; and wanted to meet us, as much as we wanted to meet them.
When I was first introduced to your kidney recipient, the smile on my face became almost as big as the smile I always had for you. He was easy to hug. I could not help myself and kept placing my hand upon his arm or shoulder. I had to literally remind myself to pull my hand away so as not to seem so intrusive to his personal space.
I would ask him if I was crowding him; and to tell me if my hand on his shoulder was bothersome. He was so gracious and would say no it is okay, it didn’t bother him. I think he was just being very kind to me. I immediately felt protective of him and guided him across the lawn to the Monument where your name was etched. Daddy George was brimmed with tears, but funny I wasn’t; I would have expected myself to be crumbling in joy, but my joy was just beaming out another way.
I had brought pins of you, picture buttons from the Donate Life Run/Walks and Float decorations events. I think I had 6 different buttons and I started handing them to him, saying would you like this, how about this one; I eventually just gave them all to him, which he kindly accepted. I also gave him my donate life green bracelet and your website bracelet.
His mother kept telling me thank you. That you saved her son’s life, but she didn’t need to tell me such things. I was so grateful that we could see how your gift gave such joy to another family; and how your gift gave a young man one less difficulty to worry about. We had such an immediate connection with the family, which opened up quite a few amazing connections between you and your recipient.
I already knew by letter that his maternal family name is “Ellis” as your paternal family name is also Ellis. He and his grandfather Ellis were very close. It is sad to write that his grandfather just recently died, but we did get to meet his grandmother Ellis. She is a beautiful lady in every way.
You were both born with special needs and rare birth conditions. His mother, as I did for you, worries about him constantly, his care, his safety and his father keeps a keen eye on him. It is obvious how deeply loved he is by his family.
Of all the hotels to stay in at Salt Lake City, the one that kept coming up as I was looking to book a room, was The Little America, which happens to have a mural painting in the restaurant of his great-great grandmother as a patron; additionally his great-great aunt was married to the Hotel Founder. We captured a picture of the mural before we left, and I remember hearing a child in the restaurant saying look at those people taking a picture of a picture. If only they knew the reason why?
Additionally, which I thought was truly a sign from you, was the coordinates for your name on the Monument, Panel #19/Line #25 – my birthday is Feb 19 and when I told your recipient this, he told me his birthday is Mar 25! It couldn’t be more perfect.
We laughed and wondered at all this; was it ordained? Were we meant to meet? Did you foreshadow being his recipient, long before the 23rd of November? While this remained on my mind as simply remarkable coincidences, the other day, when starting this blog, I was thunderstruck as I recalled the words you said that night after surgery, on November 17, when you cried out “they’re blinding me; they’re blinding me!” I didn’t understand what was happening and thought the severe post-surgery headache you were suffering was blurring your vision, which could very well be true, but then again your kidney recipient is legally blind. Monica and I got shivers when we spoke about it the other day. I think I will leave it to the mystery and Grace of our Lord.
Your kidney was the 3rd try for your recipient. On the way to the hospital, he told his mother, this one will be a match. And it was. A life was saved. Two families met and are united together in prayer for a long healthy life for this young man. We consider your recipient family our family, joined together by you.
Hopefully we will be in Utah next spring/summer and the family may be out here in April. I know your hospital would like to get us together for a flag raising ceremony; I need to pursue that with the family. But meanwhile, we stay connected through text and Facebook, and little by little our families will get to know each another better. Our center orb is a young man, fighting his disability and youthful struggles, trying to find his way, to the life he wishes to live. I know you will always be watching over him. And I will always keep him in my prayers.
As a doctor told me once…‘you know some people believe in miracles’ I have come to believe miracles do happen. When so many thought you wouldn’t do much, you always served a purpose in life. To make us smile, to make us laugh, to help us see the simpler joys in life, to love unconditionally and forgive easily.
Now that you are gone, I share you with the world. When you were alive I kept you to myself, because I felt it was the only way I could protect you. But, I was wrong. You touched lives without my knowledge while you lived and continue to do so today without my participation. Your Mission Statement below could never be truer than it is today. Love forever your Mother
“No matter your station in life, we all have the ability to touch the heart of another,
and make a difference in the life of someone else”
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