[tri-wings] Re: touched by lynn's story

lynn,
  thanks for sharing, i'll admit i generally lurk, because i'm the one who is 
having trouble connecting to my child "who is different, who is not supposed to 
live, who is not going to be here very long" 
  i'm the one who has self protective walls built up around me, that i have to 
rip down, one painfull block at a time.
  and I'm his mother, the one who is carrying him...
  I'm the one who cried..."I can't have a handicapped child!!"
  My husband is the one who loves Mitchell already and we are only 7 months 
pregnant yet...
  so I  admit I balled when I read your story
  thankss for sharing
  Today we also had a 3D ultrasound, WOW  WOW  WOW
  Mitchell has my nose...
  sniff sniff....
  jenn
   
   
  
LYNN DOMENICI <lmb268@xxxxxxx> wrote:
  




Karen, 

Thank you for sharing this story! I hope you don't mind if I share it on my
web page as well. It touches me so deeply especially about the father
finally letting the barrier down and seeing his son with unconditional love
for the first time. My husband could not get close to our Joe for the first
several months. It was not because of his disabilities as we already had a
daughter with Down Syndrome so we already came to terms with issues
surrounding parenting a child with special needs. joey was different. Joey
was not supposed to be born. Joey was not going to stay. My husband was
afraid to let him in. He wanted to keep his guard up to protect himself
fromthe pain of loss. I was frustrated at times because although he stood
byus and supported me the best he could he did not get actively involved in
Joey's care early on. He is a wonderful father that I know from watching
himcare for our daughter even when she was in the NICU after birth and after
her heart surgery when she was a few months old. He was a natural, caring
and loving father. He did not help out too much early on with Joe and
interacted with him very little. I never pushed as I feared that I would
push him further away. I watched as Joey grew and became more aware of his
surrounding including his family and familiar faces. I observed as Joey
watched his father interact with his sister and I saw him try to gain
attention with his babbles and movements. His head would turn to follow his
Dad as he passed by when he would come and go from the room. Joey was
patient. It was hard for me to watch and not try to force a bond that
shouldhappen naturally. I became ill and was having a hard time caring for
Joe or myself. My husband took some time from work to care for us. Joey
andI shared the futon in the parlor where we slept and lived most of our
time. I recall waking in and out of sleep during my illness and I saw that
wall come down. Joey's patience paid off. I could hear the gentle voice of
a father comforting his son. I saw them looking into each others eyes and
falling in love. I saw them develop a relationship I thought would never
happen. It may not have been the instant love at first sight that I
witnessed between my husband and daughter at her birth, but this somehow was
even more special. The little boy in the weak body was able to tear down
that wall of protection his Dad had built. I can recall barely having the
strength to lift my head off the pillow, but straining to keep my eyes open
and watch as they explored one another. Daddy held his little boy and saw
him for the first time. Yes, he always loved him, but it was from a
distanceand very guarded. Now they knew one another and had a special bond.
Since that time the one place of comfort for Joey when his health was poor
or he was not feeling well was his Daddy's shoulder. His head would rest so
perfectly upon that shoulder as his father would pace and whistle a tune to
sooth him. Toward the end of Joey's life it became more difficult for me to
comfort him as I was his primary care giver. I was Mom, Nurse, Doctor,
therapist, etc. I had to do some of the not so pleasant things to take care
of him. He could always find comfort on his father's shoulder. The day he
passed I held Joey most of the day. My husband took him for one last hug
while Joey was still taking some final breaths. As he placed him on his
shoulder Joey who had been mostly sedated and quiet let out one final cry. 
It was startling to most of us present, but I thought it fitting. He was
letting his father know he knew he was on his shoulder the place where he
found comfort. He had always been more vocal with his dad and even his
laugh was reserved for his father and nobody else. I was privileged to hear
his hearty chuckle, but could not make him do it, just Daddy. It was his
gift to his father. Well, I am babbling, but this story struck me so. I
am so glad my husband did let Joey in. Yes, the pain of loss is great but
itwould have been worse if he never got to know his little boy and share
thatspecial bond. 

Peace, 

Lynn Mom to Joey T-18 Angel (4/15/04-11/27/05) and Marina T- 21(Down
Syndrome) 7 1/2


----------------------------------------------------------------------------
From: "Karen" 
Reply-To: tri-wings@xxxxxxxxxxxxx
To: "Tri-Med" , "Tri-Wings"

Subject: [tri-wings] The Child Knows
Date: Wed, 29 Nov 2006 12:01:09 +1100
>I wish that I had written this - this is going up on my wall for EVERYONE
toread!!
>The Child Knows
>by Rabbi Baruch Rabinowitz
>
>Loving our children unconditionally, especially those with special needs.
>
>Nota Shlomo was but five years old and my rabbi was coming for a visit.
Rabbi Moshe Shapiro, shlita, had arrived from
>Jerusalem the day before and insisted on coming to our home. Yes, he wanted
to visit with us, but primarily he wanted to
>see Shlomo, our son who has Down syndrome.
>
>Shlomo was the first one to the door. When my rabbi entered, Shlomo grabbed
him around his knees and hugged him for a
>short while. Rav Moshe commented with a smile, "He knows who loves him."
>
>During our ensuing conversation, my wife and I asked for an elaboration on
that comment. And Rabbi Shapiro explained.
>The soul of a child with physical and cognitive limitations is certainly
loftier and more complete than our own souls.
>Most souls are sent to this world to primarily fulfill their unique divine
purpose. A soul placed in a body which has
>limited functionality in this world, is sent with the primary purpose of
improving those around him. Its purpose is
>served by being there for family and friends to work on themselves. Such a
soul has special sensors to be able to feel
>and perceive the moods and emotions of others, even if overtly that ability
is not apparent. There is an intuitive sense
>which pervades many a child with special needs, enabling him to correctly
determine who really cares, who really loves,
>and who is merely pretending. And so, my rabbi instructed, it is crucial to
be sure that any therapist we engage should
>truly love Shlomo, because that
>will elicit active participation and maximum results, thereby assisting him
in fulfilling his primary purpose. He will
>feel... he will know.
>
>A few weeks later, a new physical therapist paid her first visit to our
home. She walked in, climbed the stairs ahead of
>Shlomo, and prior to the session she put on a pair of surgical gloves. Real
love! Within 15 minutes, Shlomo was bouncing
>down the steps with the therapist's pocketbook in hand. He placed it by the
front door and emphatically waved goodbye!
>He knows who loves him.
>
>The ramifications of this revelation go far beyond therapeutic situations
and, indeed, far beyond children with special
>needs. Don't we all respond more energetically and with greater desire,
drive and determination when we are encouraged
>by love? Don't we all find ourselves working harder to please the one who
encourages us with acceptance, optimism,
>confidence and pride?
>
>Professionals have often said that children brought up in a home which has
asupportive environment and which is replete
>with positive reinforcement will develop a greater degree of self
confidenceand self-esteem than those brought up in a
>punitive system. How much more so for the child who is blessed with a soul
that has heightened awareness and
>sensitivity! The child with special needs responds to each interpersonal
relationship and therapeutic challenge far
>better when it is accompanied by supportive positive encouragement and
genuine love.
>
>I have met parents who have told me that they find it hard to love a child
who is physically deformed or developmentally
>disabled. Is it because the society around us places so much emphasis on
external appearances that one who doesn't fit
>the image elicits uncomfortable emotions? Is it because of the extra amount
of time and effort necessary to help such a
>child succeed and develop? Is it because we somehow feel (baselessly) that
it's "our fault" that our child has issues,
>and we have difficulty facing our own faults? Is it because we experience
somuch pain that we cannot face reality? Is
>it because we so mightily feel the pain and frustration of the child that
weavoid contact? Is it because we are ashamed
>of this child with special needs?
>
>Causes may be theorized, but practically the response is not at all
appropriate. It certainly does nothing to help us
>move forward in a constructive way.
>
>UNCONDITIONAL LOVE
>
>A number of years ago, a middle-aged couple approached me with an
unresolvedissue. Their ninth child was born with both
>developmental and physical abnormalities. Mrs. Schwartz accepted Simcha
withlove and dealt with him with the same
>devotion and love she did the first eight. Maybe even with more. Mr.
Schwartz, on the other hand, had difficulty playing
>with Simcha, kissing him, or even holding him comfortably. The resultant
problem was predictable. Simcha never wants to
>be held by the father, is always cranky around him, and consequently gives
him no nachas.
>
>I stated the obvious conclusion. The child was merely responding in kind.
Hedemurred and reiterated that he found it
>too embarrassing to be with the child, and so I related to him the
followingstory:
>
>One Friday, when I was a yeshiva student, I went to a mikva in Boro Park.
Exiting the showers, I came upon an elderly
>Jew who was severely deformed. He was a hunchback who was bent over to the
point of needing to tilt his head upwards
>just to be able to see forward. He looked at me and held out a bar of soap.
"Please, wash my back," he requested. It was
>obvious that he was unable to do so himself. I had difficulty enough
lookingat him, much less actually washing him. I
>just couldn't! As I tried to run past him I quickly mumbled some excuse
about being in a big rush. He grabbed my wrist
>with an iron-like grip. We looked at each other for a moment and he stabbed
me with his words of rebuke. "You have no
>ahavas Yisrael -- no love for your fellow Jew."
>
>We must learn to look at every person not just as a physical
representation,but as the bearer of a holy soul. The Torah
>obligation of "Love your neighbor as yourself" is because, as the sentence
>concludes, "I am God" (Leviticus, 19:18). We are called upon to love every
Jew in part because we all share the same
>source of soul. In the language of the Maharal, the 15th century
philosopher, each soul is called a Chelek Eloka Mimaal
>-- a "piece of God" so to speak. God blew of Himself into each person --
V'Yipach Be'Apov Nishmas Chaim. The soul which
>exists in each person emanates from God Himself. Just as it is incumbent
upon us to love the Almighty, we are equally
>obligated to love every Jew.
>
>The Sages say "Jews, Torah and God are one." The Alter from Kelm explains,
"Loving every Jew is an expression of our
>love for God." They are intertwined and are part of the same continuum. We
need to look more than skin deep... we need
>to see each person as a child of God, as a holy soul, as a "piece of God."
Just as we are not perfect, we should love
>others even if we perceive imperfections.
>
>Each and every one of our children is a gift from the Almighty. Our
childrendeserve our love. If I love because of
>beauty, talent and potential as defined by the norms of society, then I
love selfishly. If I love just because -- I
>love selflessly.
>
>My suggestion to Mr. Schwartz was that he view his child in a different
light. Try to look beyond the perception to see
>into the reality. Try to show love to your special child, to this unique
soul. Try to love because of that which we
>share in common, instead of focusing on the differences. Rabbi Pam, zt"l
once said, "The gap between our developmentally
>delayed children and ourselves is far less than the gap between us and
God."I implored the father to try to spend more
>time with his son, to develop and express love, to demonstrate affection --
and hopefully Simcha will respond in kind.
>
>Several days after our conversation, I received a call from Mr. Schwartz.
Simcha got sick the day after we had spoken,
>and his wife was unable to take him to the doctor. And so this father had
to do it for the first time -- to carry his
>child to the doctor! He was introduced to the facts of a pediatrician's
waiting room. For an hour and a half he sat
>waiting. For an hour and a half he had the opportunity to try a new
approach. He had difficulty getting started, until
>suddenly another parent looked at Simcha. "Your son is so sweet... he's
adorable... such beautiful eyes." Mr. Schwartz
>looked into Simcha's eyes and he found himself looking through his eyes
intothe depth of the soul. He suddenly found
>himself filling with emotion... a feeling which was familiar because he had
experienced it with his other children. He
>hugged his son harder and harder. He whispered, "I love you," into his ear.
For the next hour this father played with
>his son. Played and hugged. After an
>hour, his child fell asleep on his shoulder... for the first time.
>
>Within a few weeks, all barriers were broken. Simcha smiled when his father
looked at him and obviously enjoyed the time
>spent together. As a side benefit, the other children in the family became
more involved and expressive and Simcha's
>development increased dramatically. He knows who loves him. All children
respond positively to love. Yet, the child with
>developmental disabilities often reacts more dramatically. He is more
intuitively connected.
>
>When we work on ourselves to relate to our special child out of true love,
we are sending an important message to the
>child. Even if he is not endowed with the capacity to comprehend the
writtenor spoken word, even if he is incapable of
>understanding language in the way most people do, he is blessed with the
natural innate ability to know that which is
>expressed in other ways. He knows what we are feeling. It makes an
impression. He feels what we are feeling. It makes a
>difference.
>
>It's a message of love just because. It's a message of relationship with no
strings attached. It is loving the child the
>way God loves us. It's a message which inspires maximum self-esteem and
selfworth, and fulfillment of purpose.
>
>For many of us love comes naturally. Others among us may need to work on it
and develop it or dig deep and reveal it.
>And we should -- because it is healthier, more pleasant and much more
enjoyable for all involved. We must develop
>ourselves to the point where our true love overflows and our true
appreciation of our child's very existence is a
>tangible reality. It will make a difference to our child, to God and to
ourselves.
>
>This article originally appeared in Spirit Magazine.
>
>Author Biography:
>Rabbi Baruch Rabinowitz is a rebbe in Mesivta Ateres Yaakov of South Shore.
A frequent lecturer on the topic of children
>with disabilities, he is the parent of a child with Down syndrome. He
resides with his family in Brooklyn, N.Y.
>
>This article can also be read at:
>http://www.aish.com/family/mensch/The_Child_Knows.asp
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line

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