Pure inspiration!!
Showing posts with label imagine. Show all posts
Showing posts with label imagine. Show all posts
Thursday, October 11, 2012
Wednesday, October 10, 2012
31 for 21: Infantile spasms
I just read something about Down syndrome that I didn't know!
Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome. They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children. However, these spasms can lead to severe developmental regression. Apparently there is a very expensive steroid treatment which can reverse the damage. Please read the info at the link. It is fascinating!
This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent. It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly. Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms? Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression. If they are not seen to be mobile, they are left in their cribs. If they cannot self-feed, their bottles are propped for them. They are not given any opportunities to interact with the environment, and they sink lower and lower. They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!
Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.
It really puts a different spin on the whole Water and Fire thing.
Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome. They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children. However, these spasms can lead to severe developmental regression. Apparently there is a very expensive steroid treatment which can reverse the damage. Please read the info at the link. It is fascinating!
This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent. It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly. Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms? Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression. If they are not seen to be mobile, they are left in their cribs. If they cannot self-feed, their bottles are propped for them. They are not given any opportunities to interact with the environment, and they sink lower and lower. They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!
Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.
It really puts a different spin on the whole Water and Fire thing.
Sunday, September 23, 2012
Monday, September 17, 2012
A tale of two Levites
According to the Bible, Levi was the third son of the patriarch Jacob, born of his wife Leah. He was the progenitor of the tribe of Levi, which was assigned the task of taking care of the Temple and tending to the priesthood. The priests were the descendents of the Levite Aaron, the brother of Moses. Even after the destruction of the Temple in 70 C.E., people kept track of membership in the Levite and Priestly classes, and they were given special roles in synagogue life, just as many synagogue rituals were created to mirror the original Temple rituals. The identifiers are passed from father to son. For example, I know that my father is a Kohen (Priestly lineage), while my maternal grandfather was a Levite. My husband, however, is neither.
This story is about two little girls with Down syndrome, who coincidentally are both born into Levite families. The first is Kalanit Levy, born in Oregon in 2007. The other is Rachel Emuna Levin, born in Jerusalem perhaps a year later.
Kalanit was the subject of a groundbreaking legal case. Her parents sued the obstetrical center for "wrongful birth", arguing that the center had run their prenatal tests incorrectly, and had they known that the baby had Down syndrome, they would have aborted her. The parents say that they love her dearly, and simply wanted to make sure that they had the finances to give her the resources her condition would require. The case was decided in March 2012, just a few months before Kalanit's 5th birthday, and the parents were awarded $2.9 million. I hope this will cover the psychiatric bill when Kalanit wants to know why her parents wanted to kill her. Or when Kalanit's brothers wonder the same thing.
Rachel, on the other hand, is the subject of a groundbreaking approach to teaching children with Down syndrome. Her parents did not do any prenatal testing, and were shocked to learn that she had the disorder. They took it as a sign that they had a special responsibility to this child, and this sign was confirmed for them when they discovered the Feuerstein Center, located just a few minutes away from their home. Enjoy!
This story is about two little girls with Down syndrome, who coincidentally are both born into Levite families. The first is Kalanit Levy, born in Oregon in 2007. The other is Rachel Emuna Levin, born in Jerusalem perhaps a year later.
Kalanit was the subject of a groundbreaking legal case. Her parents sued the obstetrical center for "wrongful birth", arguing that the center had run their prenatal tests incorrectly, and had they known that the baby had Down syndrome, they would have aborted her. The parents say that they love her dearly, and simply wanted to make sure that they had the finances to give her the resources her condition would require. The case was decided in March 2012, just a few months before Kalanit's 5th birthday, and the parents were awarded $2.9 million. I hope this will cover the psychiatric bill when Kalanit wants to know why her parents wanted to kill her. Or when Kalanit's brothers wonder the same thing.
Rachel, on the other hand, is the subject of a groundbreaking approach to teaching children with Down syndrome. Her parents did not do any prenatal testing, and were shocked to learn that she had the disorder. They took it as a sign that they had a special responsibility to this child, and this sign was confirmed for them when they discovered the Feuerstein Center, located just a few minutes away from their home. Enjoy!
Friday, August 10, 2012
Heavy on my heart
Even though we have begun the homestudy process, I still feel so helpless when I see these children. I can't adopt them all, and most of them don't fit the criteria that we have agreed on. So please, somebody, help them!
Little Sasha, eight years old and still the size of a baby, just transferred to an adult mental institution where he probably never goes out of his crib, is inadequately fed and changed, and where, statistically speaking, he is likely to die within a year:
I first saw 8-year-old Donovan listed under "Additional Children". Now he has his own listing. Look how tiny and frail he is! Can you see his ribs through the t-shirt? I imagine he was "cheerful, sociable" as an infant, but now I doubt he has the energy for that.
Dylan is an adorable 9-year-old, sitting here on a toddler ride-on toy. I just want to scoop him up!
Back in May I blogged about Nathan, whose eyes still haunt me.
Look what a sweet baby he was. This is what years in an institution will do to a human being.
The same transformation is evident in Sonny, who went from a cute smiley redhead:
To a frightened child, beaten by the older children (or even the staff) at an institution:
Oh my. I can't take this any more.
Little Sasha, eight years old and still the size of a baby, just transferred to an adult mental institution where he probably never goes out of his crib, is inadequately fed and changed, and where, statistically speaking, he is likely to die within a year:
I first saw 8-year-old Donovan listed under "Additional Children". Now he has his own listing. Look how tiny and frail he is! Can you see his ribs through the t-shirt? I imagine he was "cheerful, sociable" as an infant, but now I doubt he has the energy for that.
Dylan is an adorable 9-year-old, sitting here on a toddler ride-on toy. I just want to scoop him up!
Back in May I blogged about Nathan, whose eyes still haunt me.
Look what a sweet baby he was. This is what years in an institution will do to a human being.
The same transformation is evident in Sonny, who went from a cute smiley redhead:
To a frightened child, beaten by the older children (or even the staff) at an institution:
Oh my. I can't take this any more.
Wednesday, May 30, 2012
Abner
Last but not least, Renee's Challenge brings us sweet, adorable Abner:
Boy, born December 2009
Diagnosis: after-effects of general disease of the central nervous system (neuroinfection); spastic tetraparesis with strong motor disorders; general mental delays, including speech underdevelopment; undescended testicles; shortcut frenulum of tongue; convergent squint
Like Hayley, Abner has CP caused by neuroinfection. Like her, he is only 2 years old, with an excellent chance of making awesome progress with early intervention. He looks like he has great spunk and enthusiasm. I see him at age 17 playing the drums with his school band. This year he joined forces with his best friend on guitar, and they have been playing at events all around town, and even recorded a few original songs on YouTube. He is a popular boy, but is still self conscious because of some leftover speech impediment and a slight limp. He timidly asks the girl he has been worshipping from afar since freshman year to the prom with him. She says yes!
How could this beautiful, graceful creature have said yes? Abner can't believe his luck.
How could this handsome, talented boy have asked her? Hayley can't believe her luck, either!
Boy, born December 2009
Diagnosis: after-effects of general disease of the central nervous system (neuroinfection); spastic tetraparesis with strong motor disorders; general mental delays, including speech underdevelopment; undescended testicles; shortcut frenulum of tongue; convergent squint
Like Hayley, Abner has CP caused by neuroinfection. Like her, he is only 2 years old, with an excellent chance of making awesome progress with early intervention. He looks like he has great spunk and enthusiasm. I see him at age 17 playing the drums with his school band. This year he joined forces with his best friend on guitar, and they have been playing at events all around town, and even recorded a few original songs on YouTube. He is a popular boy, but is still self conscious because of some leftover speech impediment and a slight limp. He timidly asks the girl he has been worshipping from afar since freshman year to the prom with him. She says yes!
How could this beautiful, graceful creature have said yes? Abner can't believe his luck.
How could this handsome, talented boy have asked her? Hayley can't believe her luck, either!
Hayley
A little joy on Renee's Challenge is sweet Hayley:
Girl, born April 2010
Diagnosis: organic lesion of the central nervous system as a result of neuroinfection, atonic-astatic syndrome, severe delay of psychological and motor development
Hayley has CP, caused by an infection in infancy. She is still so young, she can get lots of early intervention to reach her potential! Look, she is sitting up well, as well as playing with toys.
In June 2017 I see her in a tutu, dancing with her friends at the end-of-year ballet recital. This is her last year of therapy, as her dancing and gymnastics regimen has greatly improved her muscle tone and coordination. She hasn't had a seizure in over a year, although she will continue to provide her teachers with an Epipen "just in case" until her pediatrician gives the all-clear. As she leaps through the air and prances on her tiptoes, her parents, grandparents and siblings clap enthusiastically, snapping pictures of their beautiful, graceful angel girl!
Girl, born April 2010
Diagnosis: organic lesion of the central nervous system as a result of neuroinfection, atonic-astatic syndrome, severe delay of psychological and motor development
Hayley has CP, caused by an infection in infancy. She is still so young, she can get lots of early intervention to reach her potential! Look, she is sitting up well, as well as playing with toys.
In June 2017 I see her in a tutu, dancing with her friends at the end-of-year ballet recital. This is her last year of therapy, as her dancing and gymnastics regimen has greatly improved her muscle tone and coordination. She hasn't had a seizure in over a year, although she will continue to provide her teachers with an Epipen "just in case" until her pediatrician gives the all-clear. As she leaps through the air and prances on her tiptoes, her parents, grandparents and siblings clap enthusiastically, snapping pictures of their beautiful, graceful angel girl!
Priscilla
Today's child in Renee's Challenge is urgently in need of help. Here is Priscilla:
Priscilla has pre-leukemia. She is only 2 years old. Most patients with her condition are elderly. She needs help now! Medical care for orphans in her country does not bode well for her survival rate. If she is adopted, she could get bone marrow transplants and other treatments that would reduce her odds of degenerating to acute myelogenous leukemia (AML) within months or a few years.
I see Priscilla in a few years going to school, the regular visits to the Children's Hospital a distant memory. She is still struggling with issues related to her FAS, though. Her short-term memory is very poor, which means that she needs extra help to function in day-to-day routines at home and at school. Her parents and teachers are working with her on impulse control, as well. She is very friendly and outgoing, though, and takes her challenges head-on each day. Learning to read and write, once mastered, opens up new worlds for Priscilla. She can take notes to help her remember her lessons, and discovers that journaling gives her an outlet for all the suppressed memories of her early struggles. Her poems and short stories are published in children's magazines, boosting her self-esteem. What a glorious life, for a child whose diagnosis is directly correlated to death within a few years if left untreated!
Priscilla has pre-leukemia. She is only 2 years old. Most patients with her condition are elderly. She needs help now! Medical care for orphans in her country does not bode well for her survival rate. If she is adopted, she could get bone marrow transplants and other treatments that would reduce her odds of degenerating to acute myelogenous leukemia (AML) within months or a few years.
I see Priscilla in a few years going to school, the regular visits to the Children's Hospital a distant memory. She is still struggling with issues related to her FAS, though. Her short-term memory is very poor, which means that she needs extra help to function in day-to-day routines at home and at school. Her parents and teachers are working with her on impulse control, as well. She is very friendly and outgoing, though, and takes her challenges head-on each day. Learning to read and write, once mastered, opens up new worlds for Priscilla. She can take notes to help her remember her lessons, and discovers that journaling gives her an outlet for all the suppressed memories of her early struggles. Her poems and short stories are published in children's magazines, boosting her self-esteem. What a glorious life, for a child whose diagnosis is directly correlated to death within a few years if left untreated!
Tuesday, May 29, 2012
Naomi
Today, Renee's Challenge brings us to another child living with HIV, Naomi:
Naomi loves to be a princess:
I think she would really love the holiday of Purim. I see her getting dressed up in the frilliest princess dress, with the biggest bow, and a tiara too. She is holding her princess magic wand in one hand, and a basket of goodies in the other. Her brother is dressed up as a cowboy. Purim is the anti-Halloween. Kids have the same fun dressing up in costumes, but instead of going door to door demanding sweets, they go door to door giving goodies away! At the end of the round of "Mishloah Manot", they stop at the local soup kitchen and donate some bulk foods -- and lots of cookies! This is yet another aspect of this holiday, known as "Matanot la-Evyonim" -- gifts for the poor. In the evening, they meet all their friends at the synagogue for a reading and theatrical re-enactment of the Book of Esther. Each time the villain Haman's name is mentioned, they rattle their noisemakers as loudly as they can. They fill up on special holiday cookies and run around all hopped up on sugar. Naomi is such a happy little girl, enjoying her future as an ordinary little girl, free to grow and develop without the stigma of her HIV+ status.
Naomi loves to be a princess:
I think she would really love the holiday of Purim. I see her getting dressed up in the frilliest princess dress, with the biggest bow, and a tiara too. She is holding her princess magic wand in one hand, and a basket of goodies in the other. Her brother is dressed up as a cowboy. Purim is the anti-Halloween. Kids have the same fun dressing up in costumes, but instead of going door to door demanding sweets, they go door to door giving goodies away! At the end of the round of "Mishloah Manot", they stop at the local soup kitchen and donate some bulk foods -- and lots of cookies! This is yet another aspect of this holiday, known as "Matanot la-Evyonim" -- gifts for the poor. In the evening, they meet all their friends at the synagogue for a reading and theatrical re-enactment of the Book of Esther. Each time the villain Haman's name is mentioned, they rattle their noisemakers as loudly as they can. They fill up on special holiday cookies and run around all hopped up on sugar. Naomi is such a happy little girl, enjoying her future as an ordinary little girl, free to grow and develop without the stigma of her HIV+ status.
Sunday, May 27, 2012
Robert and Dennis
For this entry to Renee's Challenge, I think that these 2 boys with designer genes should be adopted together.
Robert
and Dennis
Since they are in the same orphanage, it would be easy to adopt them together with minimal additional expense and no extra travel. They both have birthdays in December 2009, so they would be virtual twins. They could see the cardiologist together to evaluate their PFO's. Keeping a connection to each other would help ease their transition to their new life.
I see them in a family that defies stereotypes. There are 2 children already: a boy and a girl.
Robert is so vivacious, I see him defying the stereotype that children with Down syndrome are physically weak. I see him eagerly exploring his new home, stretching his muscles and growing rapidly. Learning to kick and throw a ball and climb trees.... with his tomboy sister!
Dennis, on the other hand, seems more quiet and cuddly. He seems a thoughtful little boy, who wants to look around and figure things out. I see him defying the stereotype that children with Down syndrome are unintelligent. I see him snuggling with his quiet, affectionate brother and looking at picture books. I see his brother pointing out pictures and words, and Dennis absorbing it all, quietly basking in the attention. Over time, people start noticing that Dennis actually learned to read -- before entering kindergarten!
Most of all, I see their parents defying the stereotype that "you can't adopt Down's kids" or "you can't adopt more than 1 kid at a time". And certainly "you can't adopt 2 Down's kids at the same time!". Instead, they will be proud advocates for their children with Down syndrome, just as they advocate for their daughter when she wants to try out for the football team, or their son's ballet practice and poetic talent. Each child has his or her own potential, and should be free to reach for the sky, no matter what society says!
Robert
and Dennis
Since they are in the same orphanage, it would be easy to adopt them together with minimal additional expense and no extra travel. They both have birthdays in December 2009, so they would be virtual twins. They could see the cardiologist together to evaluate their PFO's. Keeping a connection to each other would help ease their transition to their new life.
I see them in a family that defies stereotypes. There are 2 children already: a boy and a girl.
Robert is so vivacious, I see him defying the stereotype that children with Down syndrome are physically weak. I see him eagerly exploring his new home, stretching his muscles and growing rapidly. Learning to kick and throw a ball and climb trees.... with his tomboy sister!
Dennis, on the other hand, seems more quiet and cuddly. He seems a thoughtful little boy, who wants to look around and figure things out. I see him defying the stereotype that children with Down syndrome are unintelligent. I see him snuggling with his quiet, affectionate brother and looking at picture books. I see his brother pointing out pictures and words, and Dennis absorbing it all, quietly basking in the attention. Over time, people start noticing that Dennis actually learned to read -- before entering kindergarten!
Most of all, I see their parents defying the stereotype that "you can't adopt Down's kids" or "you can't adopt more than 1 kid at a time". And certainly "you can't adopt 2 Down's kids at the same time!". Instead, they will be proud advocates for their children with Down syndrome, just as they advocate for their daughter when she wants to try out for the football team, or their son's ballet practice and poetic talent. Each child has his or her own potential, and should be free to reach for the sky, no matter what society says!
Anne
Today's child on Renee's Challenge is:
Anne
Girl, born February 2008
Diagnosis: epilepsy, generalized form with severe seizures
Moderate mental delay
Sweet Anne, all dolled up for her picture!
She does have some general delays, and is not yet independent with potty training. She would greatly benefit from being in a family!
=======
In September of 2013, I see Anne going to kindergarten with all of her friends. Her epilepsy is controlled with medication, so her parents stop for a brief conference with her teacher and the school nurse (so her Epipen is properly labeled and stored) while she runs off to explore the toys and books on the shelves. She potty trained over the summer, and is very proud of her princess panties! Her "moderate mental delay" is most likely an institutional delay which she will overcome very quickly and grow up.... like every little girl should!
========
See other visions of Anne here.
Saturday, May 26, 2012
Natalee
Today, Renee's Challenge brings us a very special little girl: Natalee:
See her other possible futures here.
Natalee is a four and a half year old little girl with a very grim prognosis:
Girl, born October 2007
Diagnosis: Cerebral palsy, general delay of psychological and speech development, seizures. Natalee also has vision issues, having both a Convergent squint (right-sided) and Partial atrophy of eye nerves
This darling girl needs a family, or she’s destined to spend the rest of her life closed off from the world in a laying room.
A visiting missionary commented: "She is unable to stand, sit, roll over by herself or even hold her head up … She is almost completely unresponsive however over time she seemed to grow more peaceful as I held in my arms and sang to her."
================================
I see her being adopted by a musical family. Her father is a cantor at the local synagogue. On Friday nights he chants the Kiddush to welcome the Sabbath in a full, sonorous baritone. Her sister Sarah plays the flute, and her mother plays the piano. The house is always full of these beautiful sounds, individually and in harmony with each other. From the very start, Natalee relaxes, "grows peaceful", when she hears them. She rocks gently to the increasingly familiar tunes, and the comfort they bring accompany her as her mother lovingly stretches her spastic muscles several times a day.
Still, progress is slow. Although she clearly bonds with her family, her body is very weak and months later, she is still non-verbal. The following year, she starts kindergarten, receiving multiple services through the school, as well as continuing therapy at the local Children's Hospital several times a week. She is restricted to a wheelchair, and still does not have the strength or coordination to maneuver it herself.
In the spring of Natalee's 7th year, at the end of 1st grade, her sister celebrates her Bat Mitzvah. As Natalee watches her practice her Torah trope, her eyes shine and she quietly hums along. As Sarah labors to overcome the challenges of Biblical Hebrew, Natalee works alongside her to reach developmental milestones. At the ceremony, Natalee sits upright in her wheelchair, her head held high. She reaches intentionally for the controls and follows her sister and parents around the sanctuary as the young celebrant greets the congregation with the Torah scroll. Sarah begins the reading, her soprano clear and sweet. When she finishes to the delight of all, Natalee says her first word: "Amen"
Gradually, she develops some rudimentary forms of communication, and she quite clearly communicates to her family that she, too, wishes to have a Bat Mitzvah ceremony. She, too, wants to hold the Torah and chant the ancient words. But how? How will a girl who barely speaks a dozen words in English master text that is challenging for typical children? Natalee smiles, and reaches for her sister. "Please?" She says.
It is now the fall of 2019. High holidays bring large crowds to services, which overflow into the lobby. The Saturday between Rosh Hashana and Yom Kippur is Natalee's appointed day. She is now using her gait trainer to walk up the ramp to the Bimah, accompanied by her sister. They read the portion of Deuteronomy together, Sarah reading the words, and Natalee chanting the melody.
And together they chant in Hebrew, "Be strong and brave: for you shall bring the Israelites into the land that I promised them on oath, and I will be with you."
They then continue together with the Haftorah, with text from Isaiah that moves the whole congregation to tears.
6 As for the foreigners
Who attach themselves to the Lord,
To minister to Him,
And to love the name of the Lord,
To be His servants —
All who keep the sabbath and do not profane it,
And who hold fast to My covenant —
7 I will bring them to My sacred mount
And let them rejoice in My house of prayer.
Their burnt offerings and sacrifices
Shall be welcome on My altar;
For My House shall be called
A house of prayer for all peoples."
8 Thus declares the Lord God,
Who gathers the dispersed of Israel:
"I will gather still more to those already gathered."
Amen
See her other possible futures here.
Natalee is a four and a half year old little girl with a very grim prognosis:
Girl, born October 2007
Diagnosis: Cerebral palsy, general delay of psychological and speech development, seizures. Natalee also has vision issues, having both a Convergent squint (right-sided) and Partial atrophy of eye nerves
This darling girl needs a family, or she’s destined to spend the rest of her life closed off from the world in a laying room.
A visiting missionary commented: "She is unable to stand, sit, roll over by herself or even hold her head up … She is almost completely unresponsive however over time she seemed to grow more peaceful as I held in my arms and sang to her."
================================
I see her being adopted by a musical family. Her father is a cantor at the local synagogue. On Friday nights he chants the Kiddush to welcome the Sabbath in a full, sonorous baritone. Her sister Sarah plays the flute, and her mother plays the piano. The house is always full of these beautiful sounds, individually and in harmony with each other. From the very start, Natalee relaxes, "grows peaceful", when she hears them. She rocks gently to the increasingly familiar tunes, and the comfort they bring accompany her as her mother lovingly stretches her spastic muscles several times a day.
Still, progress is slow. Although she clearly bonds with her family, her body is very weak and months later, she is still non-verbal. The following year, she starts kindergarten, receiving multiple services through the school, as well as continuing therapy at the local Children's Hospital several times a week. She is restricted to a wheelchair, and still does not have the strength or coordination to maneuver it herself.
In the spring of Natalee's 7th year, at the end of 1st grade, her sister celebrates her Bat Mitzvah. As Natalee watches her practice her Torah trope, her eyes shine and she quietly hums along. As Sarah labors to overcome the challenges of Biblical Hebrew, Natalee works alongside her to reach developmental milestones. At the ceremony, Natalee sits upright in her wheelchair, her head held high. She reaches intentionally for the controls and follows her sister and parents around the sanctuary as the young celebrant greets the congregation with the Torah scroll. Sarah begins the reading, her soprano clear and sweet. When she finishes to the delight of all, Natalee says her first word: "Amen"
Gradually, she develops some rudimentary forms of communication, and she quite clearly communicates to her family that she, too, wishes to have a Bat Mitzvah ceremony. She, too, wants to hold the Torah and chant the ancient words. But how? How will a girl who barely speaks a dozen words in English master text that is challenging for typical children? Natalee smiles, and reaches for her sister. "Please?" She says.
It is now the fall of 2019. High holidays bring large crowds to services, which overflow into the lobby. The Saturday between Rosh Hashana and Yom Kippur is Natalee's appointed day. She is now using her gait trainer to walk up the ramp to the Bimah, accompanied by her sister. They read the portion of Deuteronomy together, Sarah reading the words, and Natalee chanting the melody.
And together they chant in Hebrew, "Be strong and brave: for you shall bring the Israelites into the land that I promised them on oath, and I will be with you."
They then continue together with the Haftorah, with text from Isaiah that moves the whole congregation to tears.
6 As for the foreigners
Who attach themselves to the Lord,
To minister to Him,
And to love the name of the Lord,
To be His servants —
All who keep the sabbath and do not profane it,
And who hold fast to My covenant —
7 I will bring them to My sacred mount
And let them rejoice in My house of prayer.
Their burnt offerings and sacrifices
Shall be welcome on My altar;
For My House shall be called
A house of prayer for all peoples."
8 Thus declares the Lord God,
Who gathers the dispersed of Israel:
"I will gather still more to those already gathered."
Amen
Friday, May 25, 2012
Today he is 5
I want to say Happy Birthday, but it probably isn't.....
Nikita R. is turning 5 today. I have probably viewed his profile more than any other one.
but he is doing well.
I so, so hope so!
FULL MEDICAL INFO AVAILABLE!
Nikita R. is turning 5 today. I have probably viewed his profile more than any other one.
Boy, born May 25, 2007
Eyes: Gray
Hair: light brown
Nature: Quiet
Eyes: Gray
Hair: light brown
Nature: Quiet
Diagnosis: Down syndrome
Nikita is a HEALTHY 4 (now 5) year old boy who is waiting for his family.
This picture has not been updated in nearly 2 years. I wonder what he looks like now. Has he been transferred? Will he be transferred soon, now that he is 5? Are his cheeks still rosy and oh-so-pinchable? Does that sweet pouty mouth ever get to smile and laugh? Are his eyes now sunken and hollow, or do they twinkle and sparkle?
He has an extra pinky finger on his right hand,
When I first read this, I cracked up, since it reminded me of Count Rugen in The Princess Bride. Of course, Count Rugen was evil, and also had the extra finger on his LEFT hand. So instead, I call Nikita "Count Ruben". Nice Jewish name! Anyway, is that a handicap?! I think it would be great to have an extra pinky -- especially for playing piano! I guess if he really wanted to have it removed we could.....
and some minor
strabismus,
Yeah, his eyes are a bit crossed, but in this picture, it just looks to me like he is just looking up at me. Maybe asking if that birthday present is really for him? And the cake too? Maybe asking for forgiveness for making a mess..... (Of course I'd forgive him!) Maybe he's just praying? In any case, minor strabismus can probably be resolved without resorting to surgery.
but he is doing well.
I so, so hope so!
He is learning to walk and get
around, and will really benefit from having a family full of siblings to
chase after and model! He understands what he is asked and responds
appropriately. Speech coming along.
I can SO see him playing with my 2- and 3-year old boys. Learning from them and having fun, but most of all, loving, and being loved! My big girls are so good and loving with their brothers, I know they would be great with him, too.
FULL MEDICAL INFO AVAILABLE!
So we could be well-prepared with what his needs might be.
Happy fifth birthday, Count Ruben. I hope you will be home before you turn six!
Thursday, May 24, 2012
Wilson
Continuing on with Renee's challenge! Here is Wilson:
Wearing that "All American" baseball jersey, Wilson looks as though he is already here, chewing gum and getting ready to pitch at Little League practice. Watch him stare down the batter!
Wilson's schedule is full: Practice on Mondays, Hebrew School on Tuesdays and Thursdays, piano lessons on Wednesdays, except once every 3 months when he goes to the doctor to get his ARV medication prescription renewed. Friday is clean-your-room-for-Shabbat day. Saturday morning he puts on his special shirt and tie and walks to shul (synagogue) with his parents and big sister. Then they all head over to grandma's, where they meet up with his cousins. He loves talking with his cousins about the latest Red Sox game. He is a wiz at baseball stats. He proudly tells grandma and grandpa how he will be playing "Take Me Out To The Ballgame" for his next piano recital.
On Sunday his team plays with the JCC league while his sister is doing her homework. So much work in 6th grade! Wilson doesn't want to think about it. 3rd grade is about as perfect as it gets!
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See some other visions for Wilson here.
Wearing that "All American" baseball jersey, Wilson looks as though he is already here, chewing gum and getting ready to pitch at Little League practice. Watch him stare down the batter!
Wilson's schedule is full: Practice on Mondays, Hebrew School on Tuesdays and Thursdays, piano lessons on Wednesdays, except once every 3 months when he goes to the doctor to get his ARV medication prescription renewed. Friday is clean-your-room-for-Shabbat day. Saturday morning he puts on his special shirt and tie and walks to shul (synagogue) with his parents and big sister. Then they all head over to grandma's, where they meet up with his cousins. He loves talking with his cousins about the latest Red Sox game. He is a wiz at baseball stats. He proudly tells grandma and grandpa how he will be playing "Take Me Out To The Ballgame" for his next piano recital.
On Sunday his team plays with the JCC league while his sister is doing her homework. So much work in 6th grade! Wilson doesn't want to think about it. 3rd grade is about as perfect as it gets!
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See some other visions for Wilson here.
Wednesday, May 23, 2012
Britta
Another day, another child on Renee's challenge. This one is Britta:
Britta is HIV+, but with proper medical care that should not hold her back at all!
See some other futures for Britta here.
I imagine her as the youngest child in a family full of boys. I see her chasing a ball and exploring a muddy creek with her brothers. I see her building model airplanes and flying a kite on a sunny spring day. I see her body surfing on the beach and climbing trees to find robin eggs. I see her putting a polished apple on the teacher's desk.... with a worm in it!
And then I see her parents trying oh-so-hard to bring out that girly-girl they thought they were adopting....
A frilly Shabbos dress, pretty bows in her hair..... Yeah, she can dig that too!
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Actually, who she REALLY reminds me of is Matilda (who was also adopted!), but that's copyrighted...... Are you her Miss Honey?
Britta is HIV+, but with proper medical care that should not hold her back at all!
See some other futures for Britta here.
I imagine her as the youngest child in a family full of boys. I see her chasing a ball and exploring a muddy creek with her brothers. I see her building model airplanes and flying a kite on a sunny spring day. I see her body surfing on the beach and climbing trees to find robin eggs. I see her putting a polished apple on the teacher's desk.... with a worm in it!
And then I see her parents trying oh-so-hard to bring out that girly-girl they thought they were adopting....
A frilly Shabbos dress, pretty bows in her hair..... Yeah, she can dig that too!
===========
Actually, who she REALLY reminds me of is Matilda (who was also adopted!), but that's copyrighted...... Are you her Miss Honey?
Tuesday, May 22, 2012
Sweet Elaine
Now that her blog is back up, here is the latest in Renee's Challenge. Her name is Elaine: (Other stories here)
Elaine looks like such a sweetie! So friendly and approachable. Her latest update says: "Elaine's diagnosis has been changed to MILD mental delay. She is making good progress in her mental development. She is happy and healthy, polite, and plays well with other children. Elaine is also very tender, and helpful."
I can easily imagine her as the middle sister. Her 5-year-old younger sister absolutely adores her -- and the feeling is mutual! They are both learning to read, and they read "Dora the Explorer" books to each other. They also play with dolls together, and they feed each other's imagination like nobody else in the family can.
At the same time, she connects to her 12-year-old sister, too. She is the perfect audience for pre-teen angst, supportive and affectionate. In return, she is a devoted sidekick when the big sister wants company in kitchen projects, art projects, getting-in-trouble projects......
At school, she receives services in accordance with her IEP, but she is otherwise fully integrated into her classroom. She rapidly learns English, hopscotch, and playground politics. Her favorite subject is Art, and she loves making clay figures that are remarkably expressive.
With all the love and support from her sisters (and parents!), I see her closing the gaps of her institutional delays, and making Honor Roll in 8th grade. She has by now pursued advanced sculpture classes at the local art school. She is learning about digital animation and produces several short clay-mation features which are featured on her school web page. The 3D skills acquired in this hobby also develop her spatial reasoning skills, and she truly comes into her own in High School geometry. She goes to college and majors in Engineering. Disability? What's that?!
Elaine looks like such a sweetie! So friendly and approachable. Her latest update says: "Elaine's diagnosis has been changed to MILD mental delay. She is making good progress in her mental development. She is happy and healthy, polite, and plays well with other children. Elaine is also very tender, and helpful."
I can easily imagine her as the middle sister. Her 5-year-old younger sister absolutely adores her -- and the feeling is mutual! They are both learning to read, and they read "Dora the Explorer" books to each other. They also play with dolls together, and they feed each other's imagination like nobody else in the family can.
At the same time, she connects to her 12-year-old sister, too. She is the perfect audience for pre-teen angst, supportive and affectionate. In return, she is a devoted sidekick when the big sister wants company in kitchen projects, art projects, getting-in-trouble projects......
At school, she receives services in accordance with her IEP, but she is otherwise fully integrated into her classroom. She rapidly learns English, hopscotch, and playground politics. Her favorite subject is Art, and she loves making clay figures that are remarkably expressive.
With all the love and support from her sisters (and parents!), I see her closing the gaps of her institutional delays, and making Honor Roll in 8th grade. She has by now pursued advanced sculpture classes at the local art school. She is learning about digital animation and produces several short clay-mation features which are featured on her school web page. The 3D skills acquired in this hobby also develop her spatial reasoning skills, and she truly comes into her own in High School geometry. She goes to college and majors in Engineering. Disability? What's that?!
Saturday, May 19, 2012
Harding does Hanukah
Next up on Renee's challenge is Harding: Here are some other visions of his future.
Avrum and Shifra had absolutely no plan to adopt. With 2 adult children and twin boys in High School, they thought they were all set for retirement in their luxurious house in a nice neighborhood. Life is good! Then the twins went to spend the Summer of 2012 in Israel at a Yeshiva (religious academy). The house was so quiet suddenly! Too quiet.... How could this be? This is what they wanted, no?
.....
On Tisha B'Av, the fast day commemorating the destruction of the 1st and 2nd Temples in Jerusalem, they pray at their usual synagogue, reciting the familiar prayers from the book of Lamentations, comparing the Jewish people without their Temple to the widow and the orphan..... As they leave the synagogue, they see a poster advocating adoption of special needs orphans -- is that their boy in the picture?! Yakov is definitely in Israel, but why is his 2nd grade photo staring at them out of this poster? The next day, they call the number on the poster, and they know that retirement can wait....
......
The adoption is fast, even by Ukraine standards. Their homestudy is quick and easy, and a series of serendipities pave their way to adopt just in time for Hanukah, an unheard-of 4 months from commitment to homecoming. His regimen of ARV medications is easy to manage, and he readily soaks up all that his new home has to offer. They name him Nissim, which means "miracles", both because Hanukah commemorates the miracle of the oil and because of all the miracles that brought this little boy to them. As Nissim lights the menorah for the first time ever, surrounded by his brothers and parents, he slowly repeats the blessing after them:
"Barukh atah Adonoy, Elokeynu melekh ha-olam, she'asoh NISSIM la-avoseynu bayomim ha-hem bazman ha-zeh."
Blessed are You O Lord, G*d King of the universe, Who made miracles for our forefathers in those days at this time.
Amen.
Avrum and Shifra had absolutely no plan to adopt. With 2 adult children and twin boys in High School, they thought they were all set for retirement in their luxurious house in a nice neighborhood. Life is good! Then the twins went to spend the Summer of 2012 in Israel at a Yeshiva (religious academy). The house was so quiet suddenly! Too quiet.... How could this be? This is what they wanted, no?
.....
On Tisha B'Av, the fast day commemorating the destruction of the 1st and 2nd Temples in Jerusalem, they pray at their usual synagogue, reciting the familiar prayers from the book of Lamentations, comparing the Jewish people without their Temple to the widow and the orphan..... As they leave the synagogue, they see a poster advocating adoption of special needs orphans -- is that their boy in the picture?! Yakov is definitely in Israel, but why is his 2nd grade photo staring at them out of this poster? The next day, they call the number on the poster, and they know that retirement can wait....
......
The adoption is fast, even by Ukraine standards. Their homestudy is quick and easy, and a series of serendipities pave their way to adopt just in time for Hanukah, an unheard-of 4 months from commitment to homecoming. His regimen of ARV medications is easy to manage, and he readily soaks up all that his new home has to offer. They name him Nissim, which means "miracles", both because Hanukah commemorates the miracle of the oil and because of all the miracles that brought this little boy to them. As Nissim lights the menorah for the first time ever, surrounded by his brothers and parents, he slowly repeats the blessing after them:
"Barukh atah Adonoy, Elokeynu melekh ha-olam, she'asoh NISSIM la-avoseynu bayomim ha-hem bazman ha-zeh."
Blessed are You O Lord, G*d King of the universe, Who made miracles for our forefathers in those days at this time.
Amen.
Maggie's first day of school
Continuing with Renee's challenge, here is my vision of Maggie's future. Here are a few others.
I think blue looks really good on her.
It is September of 2015. Maggie is wearing a pretty blue dress -- her favorite! -- which matches perfectly her Jazzy, bright blue glasses. Her walker is likewise personalized with blue duct tape, and covered with stickers of the Little Mermaid. Herpaparazzi loving Mommy and Daddy are taking pictures of her in front of her school with a tear-streaked camera.
"C'mon, already! I don't want to be late for my first day of school!"
They come inside and meet her teacher. Mrs. K. is wearing a gorgeous blue blouse with a frilly collar, so Maggie flashes her bright smile at her and says "I LOOOVE your shirt! Is blue your favorite color too? My brother's favorite color is red, and my sister's favorite color is yellow, and...." Mrs. K. is smitten with this bold child who is talking a mile a minute. By the time the class is called to circle time, it seems Mrs. K. knows everything about Maggie. Or so she thinks! Oh boy is she in for a fun year.
....
By Friday, Maggie has 2 new friends in her class. As she zips across the classroom (just barely leaning on her walker) to greet Mommy at the end of the day, she says "Mommy, Mommy, can Esther and Rachel come over for Shabbat tonight?" The parents make all the arrangements, and the 3stooges little girls pile into the back of the minivan, together with 1st grader Jessica and 3rd grader Sammy. At home, the girls sit at the kitchen counter cutting salad while Jessica is setting the table and Sammy is picking up toys in the living room. Tantalizing aromas of soup, roast meat and fresh-baked challah bread fill the house.
As evening falls, the whole family congregates about the table. The girls bless the candles together, and then Daddy blesses the wine (the children drink grape juice instead). Finally they all bless the bread together and the meal begins. After dinner, they sing songs until bedtime. Maggie, Esther and Rachel share a new song they learned at school. The peaceful Shabbat has come again.
I think blue looks really good on her.
It is September of 2015. Maggie is wearing a pretty blue dress -- her favorite! -- which matches perfectly her Jazzy, bright blue glasses. Her walker is likewise personalized with blue duct tape, and covered with stickers of the Little Mermaid. Her
"C'mon, already! I don't want to be late for my first day of school!"
They come inside and meet her teacher. Mrs. K. is wearing a gorgeous blue blouse with a frilly collar, so Maggie flashes her bright smile at her and says "I LOOOVE your shirt! Is blue your favorite color too? My brother's favorite color is red, and my sister's favorite color is yellow, and...." Mrs. K. is smitten with this bold child who is talking a mile a minute. By the time the class is called to circle time, it seems Mrs. K. knows everything about Maggie. Or so she thinks! Oh boy is she in for a fun year.
....
By Friday, Maggie has 2 new friends in her class. As she zips across the classroom (just barely leaning on her walker) to greet Mommy at the end of the day, she says "Mommy, Mommy, can Esther and Rachel come over for Shabbat tonight?" The parents make all the arrangements, and the 3
As evening falls, the whole family congregates about the table. The girls bless the candles together, and then Daddy blesses the wine (the children drink grape juice instead). Finally they all bless the bread together and the meal begins. After dinner, they sing songs until bedtime. Maggie, Esther and Rachel share a new song they learned at school. The peaceful Shabbat has come again.
Friday, May 18, 2012
Prince Presley
Second contribution to Renee's challenge.
Here is Presley: (See other visions of his future here.)
Presley has Leukemia. He is so sick, but he is still smiling! He really needs a family to come and take care of him so he can get treated. I know a family from my congregation who lost a little girl to Leukemia last year. She was almost 3 years old when she died. Like Presley, she was a beautiful, happy child who brought joy everywhere she went. I can imagine them, or a family like them, adopting Presley. He would then be an only child -- a Prince! He would get the very best treatment at Children's Hospital and at the Dana Farber Institute, surrounded by the love of doting parents and a committed community. The knitting circle would make him a nice big knit kippah to cover his head during chemotherapy. He would learn to join in with the other children in singing "Adon Olam" at the end of services, enjoying the kiddush (ceremonial luncheon) afterwards in the community room, and celebrating holidays and special occasions. The whole community would rejoice when his course of treatment is completed, when he would come up to the Torah with his parents to get a special blessing. Through his healing, his parents would likewise be emotionally healed. They would confidently proceed to adopt a sibling for Presley, having seen the blessings that adoption had bestowed upon them. As the adoption is completed, the mother will find herself pregnant again -- 2 new siblings in the same year!
As he grows with his brother and sister, I see Presley learning to play a musical instrument. Ukulele, anyone? I see him learning a few chords and happily singing songs with his family and friends. He would go to the local school, where there are many families from Russia and Ukraine. The local district also has excellent services for his special needs. He would blossom and thrive. In the spring festival, he would entertain all the kids with original songs that he would accompany on his ukulele. He belongs.
Here is Presley: (See other visions of his future here.)
Presley has Leukemia. He is so sick, but he is still smiling! He really needs a family to come and take care of him so he can get treated. I know a family from my congregation who lost a little girl to Leukemia last year. She was almost 3 years old when she died. Like Presley, she was a beautiful, happy child who brought joy everywhere she went. I can imagine them, or a family like them, adopting Presley. He would then be an only child -- a Prince! He would get the very best treatment at Children's Hospital and at the Dana Farber Institute, surrounded by the love of doting parents and a committed community. The knitting circle would make him a nice big knit kippah to cover his head during chemotherapy. He would learn to join in with the other children in singing "Adon Olam" at the end of services, enjoying the kiddush (ceremonial luncheon) afterwards in the community room, and celebrating holidays and special occasions. The whole community would rejoice when his course of treatment is completed, when he would come up to the Torah with his parents to get a special blessing. Through his healing, his parents would likewise be emotionally healed. They would confidently proceed to adopt a sibling for Presley, having seen the blessings that adoption had bestowed upon them. As the adoption is completed, the mother will find herself pregnant again -- 2 new siblings in the same year!
As he grows with his brother and sister, I see Presley learning to play a musical instrument. Ukulele, anyone? I see him learning a few chords and happily singing songs with his family and friends. He would go to the local school, where there are many families from Russia and Ukraine. The local district also has excellent services for his special needs. He would blossom and thrive. In the spring festival, he would entertain all the kids with original songs that he would accompany on his ukulele. He belongs.
Thursday, May 17, 2012
Reid
This is my first response to Renee's challenge. For the next 2 weeks, she will post the profile of one child with special needs, and challenge her readers to imagine a future to each one. I hope to make a few contributions here.
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Here is Reid: (See other contributions to the challenge here.)
Look at that adorable smile! I can see him coming home to a loving Jewish family with a big brother and a brand new baby sister. I can see him getting treated for his hypospadia at the same time that he is circumcised and welcomed into the covenant and named Joshua. I see him getting a proper regimen of nutrition and medication to address his epilepsy. I see him going to school and gradually transitioning from a wheelchair, to a walker, until he can walk with crutches and braces as he approaches his Bar Mitzvah in the summer of 2019. He is studying his portion, which comes at the beginning of Deuteronomy, where Moses discovers that Joshua, not he, will enter the Promised Land. He is deeply moved by this, as he realizes why he was given this name. He asks his parents penetrating questions about the children who were left behind, who are now but a faint memory for him, and dedicates his Bar Mitzvah to the rescue of another orphan, bringing his story full circle..
=====================
Here is Reid: (See other contributions to the challenge here.)
Look at that adorable smile! I can see him coming home to a loving Jewish family with a big brother and a brand new baby sister. I can see him getting treated for his hypospadia at the same time that he is circumcised and welcomed into the covenant and named Joshua. I see him getting a proper regimen of nutrition and medication to address his epilepsy. I see him going to school and gradually transitioning from a wheelchair, to a walker, until he can walk with crutches and braces as he approaches his Bar Mitzvah in the summer of 2019. He is studying his portion, which comes at the beginning of Deuteronomy, where Moses discovers that Joshua, not he, will enter the Promised Land. He is deeply moved by this, as he realizes why he was given this name. He asks his parents penetrating questions about the children who were left behind, who are now but a faint memory for him, and dedicates his Bar Mitzvah to the rescue of another orphan, bringing his story full circle..
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