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Pioneering innovative therapies to improve the lives of those with genetic intellectual disabilities

At the Pool

By: Angela, 2014
William's Mom
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It was baby William’s first time at the pool.  We were in Florida at a conference with my husband Jay, and I was looking forward to enjoying a few relaxing days in the sun after riding the emotional roller coaster that was the previous year.  At this time last year, I was eight months pregnant and hiding from the world the fact that I knew my baby had Down syndrome.  I was so scared.  Scared to let this baby out of his safe place, scared to look into his eyes and see the diagnosis, and scared that I wouldn’t be proud of him. 

Time had nearly come to a standstill for Jay and me after our prenatal diagnosis, filled with countless hours of tears, prayers, and research.  Why us, we asked, why again?  Grace was our previous child.  She died as an infant after a prenatal discovery of a severe heart defect, a hopeful fetal operation, and a triumphant return home after birth and open heart surgery.  Her death was sudden and unexpected.  We spent the years after Grace grieving, healing, and hoping for another baby to fill our empty arms.  Early testing revealed everything was ‘normal’ with this baby.  We were so excited!  Then a screening test came back with high odds for Trisomy 21 and the statistician in me began obsessing over false positives.  After a few more tests, we were sure—our baby had an extra chromosome.  Keeping William’s diagnosis secret felt safe.  I wanted to preserve the joy and innocence of this last pregnancy, feeling that like my previous experience that everyone would end up gazing upon me with pity.  Also, we felt like it was only fair for the world to meet our baby before, or at least at the same time, as his diagnosis.

When William was born it was as if a measure of joy equal to our measure of grief had come into the world with him.  It’s so hard to explain, but he just attracts people to him.  He will stare into your souls and somehow magically change you for the better.  During my pregnancy, if parents talked this way about their children with Down syndrome, inside I would roll my eyes and think how they all must be drinking the same kool-aid…  And then I experienced the sweet nectar for myself and was transformed!  The love and pride I have for my sweet boy is overwhelming sometimes.  When I take him in public I feel like I am escorting a prince.  Strangers frequently stop us to ogle, friends line up to hold him, and I’m sure no sibling has ever been more loved.

So it was with no surprise to me, that after Will and I went to play in the water a smiling couple swam up to us, telling me how adorable they thought the baby was.  We started to chat and when I asked if they had any kids, they said they were expecting their first—a boy, they had found out recently.  We talked for a few more minutes about babies, and then they commented on how well he sits up for an 11-month old.  I thought, ‘maybe they don’t know he’s supposed to be almost walking by now?’  I mentioned that he has some developmental challenges but that he is progressing well and we are proud of him, then turned to go explore another area of the pool.  The couple looked knowingly at each other, then pursued me announcing, “We just found out two days ago that our baby has Down syndrome.”

“What?” I gasped with a huge grin, “you know MY baby has Down syndrome too, right?”  It turns out, no they could not tell for sure, and had never before met a baby with Down syndrome.  They had received the call about their son’s diagnosis the afternoon before leaving on vacation, and had only just emerged from spending the first 24 hours crying in their hotel room.  I was the first person they talked to. 

As Marica and Michael were floating weightless in the pool, trying to absorb the weight of their new reality, surrounded by dozens of young children and parents, William drew them in.  They had been thinking how unfair it was that they should have to see this baby in his cute little beach hat at what they thought was the saddest moment of their lives.  But really, this was the very moment that God was watching out for them. 

They both took turns holding Will and playing with him in the pool, while I answered their questions about life with Down syndrome.  And William showed them all the normal baby things they thought they were mourning the loss of.  He smiled at Marica, delighted in splashing in the water, wrapped his little fingers around theirs, and reached to play with Michael’s beard.  The joy and relief was evident on their faces as they realized the potential their child would have, and even some of the magic.  We became fast friends, and while I wanted to give them enough space to relax on vacation and continue to come to acceptance, we spent much of the rest of our time there together.  Our meeting was certainly a turning point for this couple, and after returning home they found a local Down syndrome group to attend and met more families.  They no longer felt so alone or devastated.

A few short months later, Thomas Angelo was born, and I can safely say that Michael and Marica have guzzled some kool-aid!  Their love for and celebration of their glorious son is obvious to all.  Thomas is one lucky boy to have such amazing and adoring parents who are perceptive of the magic and possibilities in life.  This family has and will continue to change people.  Change thinking, biases, and attitudes about relating to humans of any ability.  And it all started one sunny day at the pool...

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