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In honor of our son Brenton William Shuman born October 10, 2018, passed to heaven on May 23, 2019. We miss you dearly. We will be forever grateful of your immense need for our love during your short time here. We miss everything about you. Heaven gained a beautiful angel. Forever our baby, forever loved.
I had written a journal entry a month ago before Brenton’s death but was hesitant to share more not because I don’t believe in sharing our stories but because Brenton’s story can only be told by him. I didn’t want to place my child in a box, give limitations to someone that hasn’t had a chance to fight for everything he’s got. My heart feels called to be open to hopefully give better understanding to all the uniquely made humans of the world. My sweet Brenton was given many obstacles to overcome, a special heart, special way of gaining nutrition, a unique way of seeing the world, and physical challenges. These qualities are/were a part of my child. It’s not everything he is/was. My child is so much more then a diagnosis. I feel grateful to have born a beautiful son with many rare diseases. Brenton opened our eyes to a whole new world of caring nurses, doctors, therapist and a huge community of families with uniquely made children. By no means was this an easy community to join. We too wanted a child that was healthy, a child that would have an easy time growing, not living in hospitals, and not suffering. As Will and I faced the challenges of becoming parents to a child who requires additional support we wanted to share a poem written by longtime Sesame Street writer Emily Perl Kingsley who has been advocating for people with disabilities since 1974, when her son, was born with Down syndrome. I happen to come across this poem from an acquaintance in our disability community on Instagram. Our Brenton was not gifted Down Syndrome but other rare diseases that I will get into details in a future post. This beautiful poem helped me better describe the emotions we felt the day our Brenton was born.
Welcome to Holland
BY EMILY PERL KINGSLEY
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
I am so thankful Will and my plane landed in Holland. Holland is spectacular. I am so glad I was able to see its (his) beauty unfold for the past seven months. I love you my darling and all your rare qualities. Your story can only be written by YOU and you told your story beautifully. I desperately wish there were more chapters to your book. Your Dada and I want your name and memory to go on for years to come to help other children and families with special abilities. Will and I believe that Brenton’s greater destiny is to provide the medical profession & others with research and future solutions,so that other similar children may survive successfully with their families.
Our son died but he also lived and they are equally important to acknowledge. We want Brenton’s legacy to continue to help families and children in need. We have set up a scholarship foundation in Brenton’s name (Brenton Shuman Foundation Tax ID 84-1822626). This foundation benefits CHOC, Rady's Children's Hosptial and The Painted Turtle Camp, all which serve families with children affected by heart and rare genetic disease. No amount is too small, please consider donating.
This might seem to be an extraordinary amount of money to raise. We were fortunate as parents to be able to care for Brenton to the best of our abilities with great health care and jobs. Unfortunately many families are not so privileged, there is a huge amount of costs that go into caring for a special needs child. Insurance costs, endless hospital stays, therapy sessions, in home nursing care, special equipment for feeding, and breathing, special autos to transport and the list goes on for what seems like forever. We want to support these families to know they are loved and that their children are loved. We all could be lucky enough to be blessed with a child from Holland.
Thank you and always much love,
Mama Zabeth, Dada Will, Sissy Kiersten Ellie and beloved sweet boy Brenton William
I had written a journal entry a month ago before Brenton’s death but was hesitant to share more not because I don’t believe in sharing our stories but because Brenton’s story can only be told by him. I didn’t want to place my child in a box, give limitations to someone that hasn’t had a chance to fight for everything he’s got. My heart feels called to be open to hopefully give better understanding to all the uniquely made humans of the world. My sweet Brenton was given many obstacles to overcome, a special heart, special way of gaining nutrition, a unique way of seeing the world, and physical challenges. These qualities are/were a part of my child. It’s not everything he is/was. My child is so much more then a diagnosis. I feel grateful to have born a beautiful son with many rare diseases. Brenton opened our eyes to a whole new world of caring nurses, doctors, therapist and a huge community of families with uniquely made children. By no means was this an easy community to join. We too wanted a child that was healthy, a child that would have an easy time growing, not living in hospitals, and not suffering. As Will and I faced the challenges of becoming parents to a child who requires additional support we wanted to share a poem written by longtime Sesame Street writer Emily Perl Kingsley who has been advocating for people with disabilities since 1974, when her son, was born with Down syndrome. I happen to come across this poem from an acquaintance in our disability community on Instagram. Our Brenton was not gifted Down Syndrome but other rare diseases that I will get into details in a future post. This beautiful poem helped me better describe the emotions we felt the day our Brenton was born.
Welcome to Holland
BY EMILY PERL KINGSLEY
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
I am so thankful Will and my plane landed in Holland. Holland is spectacular. I am so glad I was able to see its (his) beauty unfold for the past seven months. I love you my darling and all your rare qualities. Your story can only be written by YOU and you told your story beautifully. I desperately wish there were more chapters to your book. Your Dada and I want your name and memory to go on for years to come to help other children and families with special abilities. Will and I believe that Brenton’s greater destiny is to provide the medical profession & others with research and future solutions,so that other similar children may survive successfully with their families.
Our son died but he also lived and they are equally important to acknowledge. We want Brenton’s legacy to continue to help families and children in need. We have set up a scholarship foundation in Brenton’s name (Brenton Shuman Foundation Tax ID 84-1822626). This foundation benefits CHOC, Rady's Children's Hosptial and The Painted Turtle Camp, all which serve families with children affected by heart and rare genetic disease. No amount is too small, please consider donating.
This might seem to be an extraordinary amount of money to raise. We were fortunate as parents to be able to care for Brenton to the best of our abilities with great health care and jobs. Unfortunately many families are not so privileged, there is a huge amount of costs that go into caring for a special needs child. Insurance costs, endless hospital stays, therapy sessions, in home nursing care, special equipment for feeding, and breathing, special autos to transport and the list goes on for what seems like forever. We want to support these families to know they are loved and that their children are loved. We all could be lucky enough to be blessed with a child from Holland.
Thank you and always much love,
Mama Zabeth, Dada Will, Sissy Kiersten Ellie and beloved sweet boy Brenton William