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.

Boys (& Girls) of Summer

September 10, 2012 at 12:04 am | Posted in after death?, Grief, life after loss, normal? | 6 Comments
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When Evan and I were told it was 100% certain that Jake had trisomy 21 (Down Syndrome), 1 million thoughts raced through my mind.  I doubt I can adequately articulate my exact thoughts and feelings at that moment.  However, when we were “by accident” told that Jake was a boy I remember very clearly the precise thought which entered my mind first.  The realization that Evan might not be able to play little league with our son was the thought which resonated first (and loudest) in my brain.

Jake was born 14 weeks early and only lived for 14 days.  He did not ever leave the NICU.  He never played little league.  His little brother and little sister did join a team this year.  They played in their first little league game over the weekend.

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The team shirts were randomly given out right before the game.  I have always thought that Jake’s lucky number was 14.  So, maybe just maybe he was there today too.

Humpty Dumpty & Hope

October 28, 2011 at 11:18 am | Posted in Grief, silver lining | 6 Comments
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In 2009 on the week before Halloween I went into labor with Sawyer.  Evan and I went to the ER.  It turned out to be preterm labor. I was given terbutaline and sent home.  I took terbutaline for the 3 weeks before I was scheduled for my c-section.  Terbutaline made me feel like I had 47 cups of coffee and I wanted to jump out of my skin.  It is no longer given to women for preterm labor.  My mind wants to make some sort of connection between Sawyer’s death and me taking the terbutaline but I am determined to (try to) keep my no guilt promise.

When I went into preterm labor I was around 34 weeks pregnant.  In my mind that was great.  Jake had been born at 26 weeks and he had died.  After Jake’s diagnosis and death I became a new person.  Growing up I always believed in happily ever after.  Everything would be ok.  In 2005 my innocence was shattered.  However, I somehow lived through that awful year. 

The new me rationalized that if I could just make it into the 30 week range in any future pregnancies Jake’s siblings would be fine.   (The new me also was silly enough to believe that becoming pregnant would not be an issue – the infertility rollercoaster instantly cured me of that delusion). 

The twins were born at 35 weeks.  Sawyer was born at 37 1/2 weeks.  Sawyer was 8 lbs at birth.  Jake was 2 lbs.  My new self thought that once Sawyer was home we were in the clear.  Six short weeks after Sawyer came home my “new” world was once again devastated.  I am still piecing myself back together.  I might be working on this for the rest of my life.  Maybe I will be like Humpty Dumpty and “all the king’s horses and all the king’s men” won’t be able to put me back together again.

However, I have my own little people with horses and they are excellent with glue.

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Road to raising a downs baby

August 12, 2010 at 7:39 pm | Posted in pregnancy | 1 Comment
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After the doctor (I will call him Dr. K1) told us over the phone the results of the cvs he said we could call anytime with questions.  So, we called a day later with questions.  Dr. K1’s nurse told us he was on vacation for 2 weeks.   After waiting 2 weeks for the results of the cvs it did not seem possible that we could wait another agonizing 2 weeks for more answers.  Maybe the desperation in my voice or the uncontrollable crying prompted the nurse to put us in touch with Dr. K2.

Dr. K2 met with us on our 2nd wedding anniversary to go over the results of the cvs.  He showed us the map of our baby’s DNA.  He showed us all chromosomes including the last one which was XY.  Somehow in the recesses of my brain I remembered 8th grade biology well enough to now know the sex of our baby.  Everything became much more real.

We continued throughout the summer going to the regular OB appointments and the perinatologist.  Our baby (ok, if you don’t remember your 8th grade biology and you did not look it up – XY is a boy) was doing great even for a down’s baby.  He had a nasal bone, he had all his pinky joints and no heart defects.  We were very optimistic that our baby boy would be a high functioning down’s child.

During July the perinatologist saw fluid in our baby’s brain.  By the next appointment it was gone.  In the middle of July he saw fluid in his abdomen.  We were scheduled to go to Maine for a family trip so, I asked if we were still ok to go.  The perinatologist said sure – there is above normal fluid but we will just monitor it.  

On August 11, I went to the bathroom at work and saw blood.  I panicked and went straight to my OB.  She looked at me, checked my cervix and the baby’s heart rate.  I was fine, cervix was still closed and the baby’s heart was great.  So, I went home.  I even babysat my best 3 year old friend Hailey while her twin brothers were being born.   All seemed well.


August 11, 2010 at 4:35 pm | Posted in pregnancy | 3 Comments

I had my share of bad times in life before 2005.  A broken engagement which I thought at the time I had cried a large river over.   Failed the bar exam and had the fear of not knowing what to do with my life.   Nothing prepared me for 2005.

In early March, 2005 I could not wait to get down the stairs to show my husband the stick I had just peed on.  There were two lines – not just the one that lets you know the pregnancy test is working.  After a year of trying we were pregnant!

I was so happy to be pregnant.  Not as happy about the morning sickness (which no one tells you that it is not only in the morning).   My happiness lasted until May.  We went for our nuchal screening test.  The results were that there was a 1 in 5 chance that our baby had trisomy 21.

We were devastated but somehow we rationalized that 1 in 5 meant that our baby could be among the lucky 4 to not to have trisomy 21.  We had to know for sure so we opted to have a chorionic villus sampling.  We waited the 2 agonizing weeks for the results.

Our baby was the 1 in 5 to have trisomy 21.  Now what?   We went to the genetics clinic and neither of us were carriers.  Spontaneous trisomy 21 – it just happens.  Really?   How could this be possible?  How do these things just happen?

I knew for sure I was continuing this pregnancy and going to raise a downs child.  My husband was not so sure.  We were referred to a counselor and began therapy.  We spoke to a rabbi.  I spoke to other parents of children with trisomy 21.  I researched how to raise a downs child. I read Expecting Adam.

Now I just had to wait for my husband to get on board.  If he did not,  I had already planned to find a way to raise the baby on my own.  I am pro choice but I knew in my heart of hearts that I could not terminate this pregnancy.  I also knew it would not be an easy road raising a downs child. 

One week in late June he agreed.   We were terrified but we were now on the road together.

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