July 8, 2013 at 10:44 pm | Posted in Grief, Jake, life lessons, Love | 5 Comments
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In May of  2005, Evan and I had the nuchal screening of our first child.  We were told that there was a 1 in 5 chance that our baby had trisomy 21, Down Syndrome.  Friends told us their tales of false positives with the nuchal screening but after a follow-up test it turned out that we were the 1.  The day that we got the results Evan had an awful migraine.  He went to bed.  I cried on the couch with our dogs.

I knew that I would continue the pregnancy.  Evan was not so sure because he needed to know more about Down Syndrome.  He questioned his ability to parent a child with disabilities.

We recently watched Perfect.  Have you seen it?  It is a segment on ESPN’s show E:60 about a father and his down syndrome daughter.  Heath White, a successful runner and businessman, wanted perfection.  Down Syndrome was not part of his plan.  However, his daughter Paisley changed his mind and heart.  He wanted to tell his story to the world. He became an advocate for Down Syndrome children.  Heath decided to run with Paisley.  He pushed her in a stroller for a total of 321 miles.  The number is significant because Down Syndrome is an extra (a 3rd) copy of the 21st chromosome.

Heath White spoke about grieving once he found out Paisley’s diagnosis.  Evan and I also grieved that day in May, 2005.  Although, looking back now it was just a preview of all the tears to come.  Perhaps all parents of Down Syndrome children grieve the loss of the “perfect” life they hoped for their child.  However, Heath learned from Paisley the true meaning of “perfection”.

We never had the chance to raise our Down Syndrome child.


September 24, 2012 at 10:46 pm | Posted in Grief, life lessons, normal?, twins | 7 Comments
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As human beings, our greatness lies not so much in being able to remake the world — that is the myth of the atomic age — as in being able to remake ourselves. – Gandhi

Anger.  It is the 2nd stage of grief according to Elisabeth Kübler-Ross.  At the time of Jake’s and Sawyer’s deaths I do not specifically remember feeling anger.  Perhaps there was no room for anger because the stages of denial, bargaining and depression seemed to have trapped me.  However, anger creeps into my life at unexpected times.

I was waiting in line with one of the twins so that she could sit in a fire truck.  We were patiently waiting our turn.

We were in line behind a very cute girl with Down syndrome.  She was not so sure about climbing up the stairs of the fire truck.  The fireman offered to help her but she wanted to do it herself.

I asked the woman with the girl in front of us in line how old she was.  She responded, “She is my daughter’s girl and she is 8.”  I wanted to say something back to her like “You mean she is your granddaughter?”  I remained silent.  Jake would have been 7.  Would he have liked fire trucks?

My little girl began to ask repeatedly, “When is it my turn?” My silence broke to reassure her that, “It is your turn next.”

The woman with the girl, looked at my daughter who at this point was jumping up and down as she continued to whine about her turn, pointed towards her granddaughter and said “This will really teach you patience.”  And there it was – anger.  I was angry at this grandmother.  I have not walked in her shoes.  I do not know the first thing about her life but I was angry.  The voice inside my head wanted to explain to her that I too had a Down syndrome child but he died.  He died before I got the chance to learn that level of patience.  I once again remained silent.

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