Team Alex is one of the recipients for the Tzedakahthon our
lovely Sunday school has chosen this year. The funding will help the Trisomy 21
clinic at Children’s Hospital. Before this walk ten years ago there was no
medical clinic for children like Alex with Trisomy 21 (Down syndrome) Grace and
her friends, Susan and Linda raised over 2.1 million dollars and this walk has
become a Villanova University staple.
I was preparing my speech to the children of our synagogues
Sunday school including my sons, Josh and Sam. What would I say…I had a long
list of points about funding, Trisomy 21, Alex and his birth story? My mind
kept thinking about how Alex has taught us more than I could ever convey. One
lesson that stands out is as Joanie Milhous said to her Villanova Girls Hockey
Team-
6 words. “Never ever ever ever
give up.”
Think of
the inspiring music of The Brand New Heavies
“Never Stop.”
http://youtu.be/iyRPfK-U0Oc
Alex is still working
his muscles to stand, walk, speak, sit and eat like all children. Alex never gives up. When I run alongside my
colleagues twenty years younger and I cannot breathe it is Alex that reminds me
you can do it. “Never ever ever ever
give up.” My pace is always much slower
but he reminds me to keep going.
As I got up to speak with Alex and Michael, my words got
caught after my never give up quote. The
tears in my throat were a mix of amazing love I have for our son, Alex and
guilt. I thought back over the last
three years of the gift of Alex in our lives. I remembered we never sent a baby announcement
out about his arrival. Josh and Sam both
had beautiful simple Crane cards. Josh
had a moon and stars and Sam had a duckie clothespin. Both cards had a quote from the Midrash, “With
each child the world begins anew.” Alex
never got one.
The year Alex was born his diagnosis was a shock and his
month long stay at the NICU was a challenge. Alex had many therapies since the time he
arrived. His third day of life he
started Occupational Therapy. He has
been working hard ever since. Last year
he rode a gorgeous horse named Oscar. Oscar was a huge animal, white with black
polka dots. The riding teacher, Miss Helen,
from England laughed the session Alex fell asleep on Oscar’s back. Miss Helen smiled,” I have never seen anyone
do that before. How decadent is must feel to nap astride such
a being. “
Yesterday I had felt this overwhelming urge to call and get
Alex back on Oscar. I dialed the farm
and Amy answered. I said, “Hi, can we
get Alex back on Oscar.” There was a
long pause. “No, I am sorry, Oscar died
last night.” “It’s weird that you called
today.” It has been months and months
since I even had thought of Oscar, why on this day? This is Alex. He is an architect of my soul. He has an intelligence that defies logic. There are multiple intelligences –, (Verbal-Linguistic,
Logical- Mathematical, Visual-Spatial, Bodily-Kinesthetic, Musical,
Interpersonal, Intrapersonal and Naturalistic) I would add love to the chart. Alex is a genius of love. I wonder if somehow Alex sensed Oscar’s
passing and somehow conveyed it to me. My
Mom thinks the horse’s spirit came to me. I love that.
Alex has this extraordinary ability to love. Once our friend’s son had to have brain tumor
surgery his Mom could not eat since she had gotten her son’s diagnosis. She held our Alex and all of a sudden she said
she felt she could eat again. Alex is a
true architect of the soul and a genius of love. Alex is a master snuggler.
I walk into the shop were each of our other blessings had
their birth announcements printed. I
hesitate thinking this kind woman must think me insane to announce the birth of
a toddler, three years old. Her Mom, who
works in the store with her, sweetly cleared a spot at a table to peruse the
huge binders of announcements. Some cute
with photos, others with adorable baby like icons. I had to pick the same type Josh and Sam had. I am sad that I cannot remember Alex’s birth
weight. Vienna said, “You look through
the binders and I will check my orders over the years.” She screamed, “Here it is.” January of 2008 the year Alex was born. Two months after he arrived I must have
thought to do this. 7.9 pounds, “With each child the world begins anew.” I am happy- I cry again. They have his birth announcement, it is three
years later. I ask Vienna, “Do I need to
include a card about why we are sending this so late?” “No!” she said. “People will understand.” I
still feel badly that we never sent it when it should have gone out.
Alex, my architect of the soul and love genius. I don’t care. People that know and love us will understand. Our shock and grief over the not knowing have
been replaced by -THANK G-D Alex is here. He is a BLESSING beyond measure, like
any child a source of joy and pain. Thank
G-d he is in our lives. The light, love and presence he brings to us are not
able to be put into words. We LOVE him
more than we can ever say. If only we
knew then what we know now.
No regrets- life is a journey and we are LUCKY Alex is part
of our journey. At baseball last night
I watch the Schwartz boys, Josh and Sam play on the same team. They are quite the players. I am proud. Alex and I watch as we chat with Collette. Collette’s brother, Andrew, is on the team
Josh and Sam are “versing.” That is how
Sam explains it. Collette asks which
foot Alex puts in his mouth more than another, she wants to tickle him but not
if his foot has been in his mouth. I
smile and say it is okay to tickle his foot. Collette asks me to teach her the signs that
Alex is learning. I show her signs for bath,
Mom, Dad, play, water, eat, thirsty, drink, shower, dog, cat etc… Then five
year old Collette teaches both Alex and me Pig Latin, her Daddy, John, has
taught her. Here we go Alex inspiring
love, understanding of Pig Latin and friendship. Our Architect of the soul and genius of love.
Sincerely,
As a Guest in the Stork's Nest ~
Mama Nancy
Many of us have heard and/or seen this saying on the image
to the right..."We used to want it all, now
we just want to pee alone!" 
