Baby Announcement

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