Thursday, May 7, 2009
One More thing on my mind today.
So, I read a post on a down syndrome board I am on the other day. And as I was reading it I couldn't believe this person felt the way they felt. Total despair and shock at their news of the diagnosis of Down Syndrome of their baby yet to be born. The tragedy hit them hard, as it does all of us parents. I felt that too and felt the pain. But it seems so distant now. It has been a short 8 weeks ago that I found out. And it feels like a lifetime ago. The pain and the heartache seems not even real these days. I focus on the heart now and maybe that's the reason. Or maybe it's because it doesn't even matter to me now. I don't know. But I see it so different. I don't feel dispair or sadness when I think of Trenton. I just don't see it. And sometimes when I'm talking to someone and I mention Down Syndrome and they say "I'm sorry" I look at them weird I'm sure. and just say...Sorry? For what? really? I am perfectly happy with my son and honestly given the chance, I wouldn't change him. I would change the fact that he has to have heart surgery, of course. But him...the down syndrome...I wouldn't change it. Because he's perfect the way he is. And he's me, he's his dad, he's us. And I don't want him different. I'm very optomistic about the advantages he has being born when he was. Not like the story I posted before. 50 years ago. And really I feel so blessed by him that I am happy and thankful everyday for that. I don't think there's anything that us parents that are experienced can say to make the pain or the hurt dissapear but I hope all the new parents out there, the ones in despair, and the ones in pain over the diagnosis of down syndrome could know what I know now. That life here in Holland is really, believe it or not, pretty damn nice. :)
Lives Lived.: How far we have come with Down Syndrome in 50 years
As I share this story I feel thankful. Thankful that my son was born today and not 50 years ago. The advancements made on the medical and educational fronts are incredible. I read this story and thought about all our children today and how lucky they are. We need to continue to fight for them. This fight isn't over by far. We need to make everyone aware of how important early education and early intervention is to our children. And we need to have their voices heard. So that our children excel further then we ever thought possible!!! Here's the story:
It was in the Pittsburgh Post Gazette
Lives Lived: The lesson of Lewis Silverstein
Life is love
Tuesday, May 05, 2009
By Mike Silverstein
My brother Lewis died last week. He was 52.
There were many things in this world that made him happy. He loved to watch Studio Wrestling, and entertained the family with his impersonation of ring announcer Johnny Francona. Bruno Sammartino was his favorite wrestler. Like many of our neighbors in Morningside, he also liked to dress up in black and gold and cheer for the Steelers, the Pirates and the Penguins. He was barely 4 feet tall.
Lewis loved music, and Christmas music most of all. For him, every day was Christmas. And any day was the right day to sing "Hark! The Herald Angels Sing."
Lewis was born with Down syndrome in 1957, and a blood incompatibility at birth required two transfusions in his first 72 hours. So tenuous was his grip on life that he did not regain his birth weight of 5 pounds, 12 ounces, until just after his first birthday. During that first year, Mom stayed up nearly every night to try to force an extra half-ounce of formula into him. She simply refused to allow him to die.
Ever so slowly, he made progress. He stood up at age 3. He took his first steps at age 6. There were few resources for families with Down children back then, and no public school facilities.
Lewis attended a preschool sponsored by Rodef Shalom Temple for a year, and then St. Anthony's School for Exceptional Children in Oakmont for more than 10 years. The love, the skill and the dedication of the nuns at St. Anthony's helped him blossom. St. Anthony's is where he developed his fondness for Christmas carols.
Lewis learned the alphabet and his numbers, but he never was able to read and write. But he helped with cooking and cleaning dishes, folded up his clothes and stored them neatly. And his table manners and personal cleanliness habits often exceeded those of his brother.
In 1980, Dad died and Mom's health began to decline. She was able to place Lewis in a group home, the Royer Center, on Negley Avenue. Even though he missed Mom and Dad, Lewis thrived at Royer. He adored his counselors, participated in all the group activities, and helped with the chores. And for more than two decades, his beloved Aunt Frances would visit him every Saturday to take him to Eat'n Park.
His order never changed, and he recited it carefully each week: Cole slaw. Spaghetti with meat sauce. Garlic bread. Iced tea. And a chocolate ice cream sundae. There always seemed to be a table ready, and for him, lunch with Aunt Fan was always the best meal ever.
Aunt Fan began to slow down by age 90 and was no longer able to take Lewis to Eat'n Park. So when I would travel to Pittsburgh every few weeks, he would insist we go to Eat'n Park and get food to take to her. And so we did, until she died at age 94.
Over the past five years, Lewis began showing signs of Alzheimer's disease. This, I have learned, is not uncommon among those with Down syndrome, even in their 40s. When he could no longer remember what the fire alarm meant, he could no longer safely live at Royer Center.
For the past year, Lewis lived at Canterbury Place in Lawrenceville, in a nursing facility among residents sometimes 40 years older. Once again, he was treated with care, showered in affection, and he was happy.
Late last month, I received a call that he wasn't eating and just wasn't himself. He was taken to the hospital, where they discovered a blood clot on his brain. Surgeons were able to clear it out, but the little guy simply ran out of strength. He died of respiratory failure.
In my grief, I want to reach out and thank so many people.
First of all, thanks to the people of Pittsburgh, who have always cared about children and the least among us. Politicians in my adopted city of Washington, D.C., often talk about the sanctity and dignity of life. But in Pittsburgh, his teachers, the nuns, his counselors, his doctors and nurses, and the people who touched Lewis' life in so many ways made real those ideals that politicians only preach.
And permit me to share the great lesson that my brother helped teach me. It is about the "power of the powerless." It is something that an essayist named Christopher de Vinck wrote a book about, and Fred Rogers wrote the introduction. In Lewis' life, I saw it firsthand.
For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.
I miss him terribly already, but I thank God I was able to share 52 years with the little fella.
It was in the Pittsburgh Post Gazette
Lives Lived: The lesson of Lewis Silverstein
Life is love
Tuesday, May 05, 2009
By Mike Silverstein
My brother Lewis died last week. He was 52.
There were many things in this world that made him happy. He loved to watch Studio Wrestling, and entertained the family with his impersonation of ring announcer Johnny Francona. Bruno Sammartino was his favorite wrestler. Like many of our neighbors in Morningside, he also liked to dress up in black and gold and cheer for the Steelers, the Pirates and the Penguins. He was barely 4 feet tall.
Lewis loved music, and Christmas music most of all. For him, every day was Christmas. And any day was the right day to sing "Hark! The Herald Angels Sing."
Lewis was born with Down syndrome in 1957, and a blood incompatibility at birth required two transfusions in his first 72 hours. So tenuous was his grip on life that he did not regain his birth weight of 5 pounds, 12 ounces, until just after his first birthday. During that first year, Mom stayed up nearly every night to try to force an extra half-ounce of formula into him. She simply refused to allow him to die.
Ever so slowly, he made progress. He stood up at age 3. He took his first steps at age 6. There were few resources for families with Down children back then, and no public school facilities.
Lewis attended a preschool sponsored by Rodef Shalom Temple for a year, and then St. Anthony's School for Exceptional Children in Oakmont for more than 10 years. The love, the skill and the dedication of the nuns at St. Anthony's helped him blossom. St. Anthony's is where he developed his fondness for Christmas carols.
Lewis learned the alphabet and his numbers, but he never was able to read and write. But he helped with cooking and cleaning dishes, folded up his clothes and stored them neatly. And his table manners and personal cleanliness habits often exceeded those of his brother.
In 1980, Dad died and Mom's health began to decline. She was able to place Lewis in a group home, the Royer Center, on Negley Avenue. Even though he missed Mom and Dad, Lewis thrived at Royer. He adored his counselors, participated in all the group activities, and helped with the chores. And for more than two decades, his beloved Aunt Frances would visit him every Saturday to take him to Eat'n Park.
His order never changed, and he recited it carefully each week: Cole slaw. Spaghetti with meat sauce. Garlic bread. Iced tea. And a chocolate ice cream sundae. There always seemed to be a table ready, and for him, lunch with Aunt Fan was always the best meal ever.
Aunt Fan began to slow down by age 90 and was no longer able to take Lewis to Eat'n Park. So when I would travel to Pittsburgh every few weeks, he would insist we go to Eat'n Park and get food to take to her. And so we did, until she died at age 94.
Over the past five years, Lewis began showing signs of Alzheimer's disease. This, I have learned, is not uncommon among those with Down syndrome, even in their 40s. When he could no longer remember what the fire alarm meant, he could no longer safely live at Royer Center.
For the past year, Lewis lived at Canterbury Place in Lawrenceville, in a nursing facility among residents sometimes 40 years older. Once again, he was treated with care, showered in affection, and he was happy.
Late last month, I received a call that he wasn't eating and just wasn't himself. He was taken to the hospital, where they discovered a blood clot on his brain. Surgeons were able to clear it out, but the little guy simply ran out of strength. He died of respiratory failure.
In my grief, I want to reach out and thank so many people.
First of all, thanks to the people of Pittsburgh, who have always cared about children and the least among us. Politicians in my adopted city of Washington, D.C., often talk about the sanctity and dignity of life. But in Pittsburgh, his teachers, the nuns, his counselors, his doctors and nurses, and the people who touched Lewis' life in so many ways made real those ideals that politicians only preach.
And permit me to share the great lesson that my brother helped teach me. It is about the "power of the powerless." It is something that an essayist named Christopher de Vinck wrote a book about, and Fred Rogers wrote the introduction. In Lewis' life, I saw it firsthand.
For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.
I miss him terribly already, but I thank God I was able to share 52 years with the little fella.
Wonderful Day! Updates on the boys
Big brother William, who was 4 in March had his evaluation done today at OT. William has Autism and we have been in OT, PT, Speech, Sensory integration, on and on. You name it we have done it. I'm happy to report he is doing SUPER. His OT said that in the past 3 months William has excelled 15 months of progress!!!! 15 months!!!! He is now testing at or above age level for all areas. Which is a huge for him and us. We will probably only be enrolled in Ot for another 8 weeks and then he will be released. That means that he will only have Speech 3 times a week. We have our quarterly evaluation with the Psychologist next Monday. And I'm hoping to see the same types of improvements there as well. I'm so proud of him and where he has come. He is really growing into such a big boy. So YAY!!!! William. :)
And today Trenton went to the Peds for his weight check and he is now 9lbs 4oz!!!! How awesome is that? So incredible he is doing so well and gaining good weight. The Dr. said he looks great and his chest sounds great! The medications must be doing some good and hopefully mom is doing good to for him. He has OT today too so we will see where he stands with that. Next week is his 2 month old checkup. OMG!!! 2 months old. I can't believe he's 2 months old already and I can't believe this time has flown so fast.
And today Trenton went to the Peds for his weight check and he is now 9lbs 4oz!!!! How awesome is that? So incredible he is doing so well and gaining good weight. The Dr. said he looks great and his chest sounds great! The medications must be doing some good and hopefully mom is doing good to for him. He has OT today too so we will see where he stands with that. Next week is his 2 month old checkup. OMG!!! 2 months old. I can't believe he's 2 months old already and I can't believe this time has flown so fast.
Wednesday, May 6, 2009
Happy Day
Good Morning, Today is a happy here so far. We started to increase the Captiprol for Trenton yesterday from .5ml to 1ml and he seems to be responding well. He slept well last night too. AND for the second day in a row he has taken 16oz in a 24 hour period. Which is 4oz over what he had been taking. He is also on track today for the same. So I'm very happy with his progress. He is still really congested but it's not anything that hasn't been happening so I'm not concerned.
Yesterday I made some progress on the medical bills and have all his care and bills taken care of now and that is a huge relief off of me. I am glad to have it all situated and no one going to be wanting our money while we are dealing with the surgery.
So, since things are going well I've been able to catch up on some things that I needed to around the house and have had some more energy since the emotioal toll hasn't been so strong the last few days.
So, all in all life is good here. Trenton is growing like a weed. We go tomorrow for a weight check and I can't wait to see how big he is. My goal is to have him at 11lbs by his surgery. Why? Well someone from someone I heard that was a good weight for a successful surgery. So I figured that would be a good goal. LOL
Tuesday, May 5, 2009
The Special Mother by Erma Bombeck
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
Monday, May 4, 2009
Things I'm learning
It's funny. I always thought I "knew" the leassons that I have always been taught throughout the years. From my parents and grandparents, from my religion, from life in general. But only recently I learned that you really don't learn a lesson until you actually experience it. And as I sit here today I have found those life lessons that were taught to me, I'm finally learning.
The big one is "Let go, Let God" You know I have heard that a million times throughout life and always felt that I did that. Till now, Now I'm actually learning what it means to be faced with something that you seriously have no control over. And where you HAVE to let go, because you will drive yourself crazy if you don't. How it becomes apparent that the only thing you can do is to Let God do his work. Pray and Pray and continue to pray. But mostly to let God do his work. That's a hard one for me. Prayers used to come in the form of asking God to do something specific....Heal someone, do this do that. Nowadays the prayers consitent more of asking God to do his work. And to give me the strength to trust that he will do what it is that he finds the right answer. I want the peace now to trust him. Really trust him. Not the trust where you say it but not mean it. There's a difference. And I'm realizing that as well. I can only ask that I can do my part and do what it is that God would ask of me. And let me do it to the best of my ability. All else is up to him. I can not heal my son. Lord knows I would do anything it takes to do it. But the fact remains I can't. I have to let go and let god. So I ask God everyday to give me the strength. To guide me in the right direction. To guide and watch over the surgeons who we put the lives of our children in. Guide them to do God's work. And ask God to comfort and protect Trenton while he endures this pain. And to give me the strength to allow it all to happen. The Serenity Pray...Which follows the same lesson. Accept the things I can not change. Yeah that's it. Accept it. And then the wisdom to know the difference. I think I am learning that as well.
So another thing I've learned is that Life really is a journey. To it there is no straight path that you can take. That is for sure. All the plannng in the world would have NEVER lead me to this path. And I really don't believe I was lost either. I think that I have a reason for being here and God knows that reason as well. This road is not the easy road. But more and more I'm seeing that I would not want it any other way. For all things there is a reason and I will also need to trust that. Find the peace in that. And that God will see us through this trying time and on the other side of this pothole in the road I am traveling we will all be better people for it. Trusting in God and his ability better, and trusting in ourselves more with what we can achieve. And happy to have learned the lessons.
The big one is "Let go, Let God" You know I have heard that a million times throughout life and always felt that I did that. Till now, Now I'm actually learning what it means to be faced with something that you seriously have no control over. And where you HAVE to let go, because you will drive yourself crazy if you don't. How it becomes apparent that the only thing you can do is to Let God do his work. Pray and Pray and continue to pray. But mostly to let God do his work. That's a hard one for me. Prayers used to come in the form of asking God to do something specific....Heal someone, do this do that. Nowadays the prayers consitent more of asking God to do his work. And to give me the strength to trust that he will do what it is that he finds the right answer. I want the peace now to trust him. Really trust him. Not the trust where you say it but not mean it. There's a difference. And I'm realizing that as well. I can only ask that I can do my part and do what it is that God would ask of me. And let me do it to the best of my ability. All else is up to him. I can not heal my son. Lord knows I would do anything it takes to do it. But the fact remains I can't. I have to let go and let god. So I ask God everyday to give me the strength. To guide me in the right direction. To guide and watch over the surgeons who we put the lives of our children in. Guide them to do God's work. And ask God to comfort and protect Trenton while he endures this pain. And to give me the strength to allow it all to happen. The Serenity Pray...Which follows the same lesson. Accept the things I can not change. Yeah that's it. Accept it. And then the wisdom to know the difference. I think I am learning that as well.
So another thing I've learned is that Life really is a journey. To it there is no straight path that you can take. That is for sure. All the plannng in the world would have NEVER lead me to this path. And I really don't believe I was lost either. I think that I have a reason for being here and God knows that reason as well. This road is not the easy road. But more and more I'm seeing that I would not want it any other way. For all things there is a reason and I will also need to trust that. Find the peace in that. And that God will see us through this trying time and on the other side of this pothole in the road I am traveling we will all be better people for it. Trusting in God and his ability better, and trusting in ourselves more with what we can achieve. And happy to have learned the lessons.
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