31 for 21: Couldn't Look Away

This is a rewrite of a post from August.  It to date has gotten the most hits and the most views.   I thought Down syndrome awareness month is a good time to have it cycle again (and I'm starting to run out of topics!).......

Last week, I stumbled upon a chat on a message board  that I wished I had never seen.  I wish I could erase it from my memory...but we all know it doesn't work that way.  It has weighed heavy on my heart ever since.  It was a support post about women who had found out their unborn babies were less than perfect and they were terminating their pregnancy.  The majority of the "imperfections" were trisomy 21, Down syndrome.  My heart broke.  I should have closed it the moment I realized what it was.  I knew better.  I couldn't.  I read it all.

I have always been against abortion.  It was one of the reasons we chose not to have any testing while we were pregnant with any of our children.  We would have never considered terminating any of our pregnancies.  We never felt it was our place to put value on a life and decide whether a child enters the world.  We felt every pregnancy was a gift and it was our responsibility to preserve that gift.  On the other hand, I am NOT judging the women that chose to terminate their pregnancies.  I wasn't placed on earth to judge them.  Yes, I was heart-broken with the number of women in that conversation that did decide to terminate their pregnancies due to prenatal testing and the news that their child had trisomy 21.  The part that struck me the most were their reasons for terminating.  They weren't crazy thoughts...some might have been a little irrational...they were typical feelings that many parents have had when presented with the news that their child is less than the "perfect" that we dream of.

"I don't want my child to suffer."
"I don't want to burden my other children."
"I am not strong enough."
"What will happen to my child after I pass?"
"I don't know how to handle a child with special needs."
"What if he/she has other medical problems."
"I did it for the love of my child."

Heck, most of these questions/concerns are made by all parents.  No one knows what the future holds.  No one knows what will happen with our children that were born "perfect".  There are NO guarantees in life. 

I just can't imagine feeling so strongly about any of these concerns that would make me want to end a pregnancy.  I wonder if any of these women would have felt differently, if they had met some of the fabulous children with Down syndrome and their parents.  Some of the fabulous self advocates with Down syndrome.  The beautiful faces of the Buddy Walk video that airs in Times Square.  The normalcy of our lives.  The typical toddler behaviors that Hailey exhibits every day.  The joy her smile brings to every person she shares it with.  If they saw the love my boys show for their little sister.  If they saw the love that my husband and I have for Hailey.  If they saw the dimpled, mischievous grin that I see every day.  The deep belly laugh I hear when she thinks she is funny.  The love I feel when she wraps those tiny arms around my neck, plants that wet open mouth kiss on my cheek and then says mama. 

I didn't care for the comments that mom's of children with Ds are living in denial.  That we sugar-coat our children's conditions because we are so miserable and are compensating for our unhappiness.  I know there will be rough times before us...I'm sure I will have difficulties with my "typical" boys, too.  We have been very fortunate with Hailey's health thus far.  Yes, I do get scared for the future.  I know that her health or development might change, but no one can tell me the boys will remain as healthy as they are now either.  Not every case of Ds is a worst case scenario!

The chat that I stumbled upon broke my heart on so many levels.  It made me sad that those little ones were never given the chance at life.  It makes me sad that those mothers felt so strongly about the unknown and the life they "didn't think" they could handle that they chose to terminate.  It disappoints me that because of this type of thinking there might be fewer and fewer people with Down syndrome born.  It upsets me because these actions might one day have my daughter questioning her worth.  Lastly, it makes my heart hurt that those mothers will never feel the joy and love that I receive from my absolutely PERFECT daughter!

What...I'm not supposed to have these?

Hmmm...mom can carry the little one to bed, dad...you're on your own!

Shhhh...don't tell the boys.  I just want to play one round.

What do you mean my hair is a mess & I have food hanging out of my mouth?

My family thinks I am awesome!

Who could resist this face?

That chat I stumbled upon reaffirms why I blog and advocate for my child and all people with Down syndrome.  It is the reason I will never stop.  It is not realistic to think that we can change the opinions of everyone, but we certainly won't give up and we will certainly try!

31 for 21: Prenatal Testing

Recently, I was asked in hindsight do I wish I would have consented to prenatal testing.  It is a question my husband and I have asked ourselves more than once since receiving Hailey's diagnosis.  My thoughts always end up going around in a complete circle.  With all 3 children, we took the same approach.  We declined all testing unless the doctor thought it was medically necessary.  Our minds were made up that regardless of what a test told us, we would still carry our baby until he or she decided to make their arrival.  There was never a thought of abortion with either of us.

My pregnancy with Hailey was different the boys'.  I had complications of some sort with both of the boys.  With my oldest, I had extremely high blood pressure.  With my middle child, I had very low fluid and we delivered him with an emergency c-section.  None of that came to play with Hailey.  I exercised up until it was too bitter cold to go outside and most fitness classes were too uncomfortable.  My blood pressure never spiked...fluid levels were always good.  My weight gain was good to low.  There were no red flags.  I have always enjoyed being pregnant and might have enjoyed hers the most.  I felt good.

I'm afraid if we would have agreed to prenatal testing, that it would have taken away that ignorance bliss.  I'm a worrier...I'm a control freak.  Knowing midway or earlier in my pregnancy would have had my nerves fried and my stress level off the charts.  I would have spent sleeping hours scouring the internet for information.  I would have freaked out over every possible medical complication she could have had.  I more than likely would have had a repeat c-section.  I recovered much quicker delivering naturally than I would have from a c-section. 

The positives to having the prenatal testing...yes, we would probably have known about Hailey's heart defect and been prepared if complications arose during labor.  Most of my tears would have been shed and we could have celebrated Hailey's birth more than cried over the loss we felt.  The feeling of being blind-sighted would have been lifted and a plan would have been in place.

So...with hindsight generally 20/20...I still have no clear cut answer.  I still don't think we would have wanted to know that early into the pregnancy.  I enjoyed my pregnancy.  I truly believe the only way prenatal testing would have worked for my personality would have been if we could have found out about 2 weeks before her delivery (Definitely not realistic!).  Not too much time that I worried for 20+ weeks and the entire pregnancy was filled with sadness and worry.  Just enough time to take the edge off and some research could have been finished.

I think the big difference for me was that getting the diagnosis post-delivery, I had a baby there to bond with.  I could hold her, talk to her, sing to her.  She wrapped her little fingers around mine.  She snuggled up against me.  I could breathe in that sweet baby smell and feel her heart beat against my chest.  

Even though we had sadness at her birth and it took this mom a little to bond with her little girl.  I wouldn't go back to change it.  That's the route we took and it was the route we were meant to take!

Hard to Look Away

Last week, I stumbled upon a chat on a message board  that I wished I had never seen.  I wish I could erase it from my memory...but we all know it doesn't work that way.  It has weighed heavy on my heart ever since.  It was a support post about women who had found out their unborn babies were less than perfect and they were terminating their pregnancy.  The majority of the "imperfections" were trisomy 21, Down syndrome.  My heart broke.  I should have closed it the moment I realized what it was.  I knew better.  I couldn't.  I read it all.

I have always been against abortion.  It was one of the reasons we chose not to have any testing while we were pregnant with any of our children.  We would have never considered terminating any of our pregnancies.  We never felt it was our place to put value on a life and decide whether a child enters the world.  We felt every pregnancy was a gift and it was our responsibility to preserve that gift.  On the other hand, I'm not judging the women that chose to terminate their pregnancies.  I wasn't placed on earth to be their judge and jury.  Yes, I was heart-broken with the number of women in that conversation that did decide to terminate their pregnancies due to prenatal testing and the news that their child had trisomy 21.  The part that struck me the most was their reasons for terminating.  They weren't crazy thoughts...they might have been a little irrational...they were typical feelings that many parents have had when presented with the news that their child is less than the "perfect" that we dream of.

"I don't want my child to suffer."
"I don't want to burden my other children."
"I am not strong enough."
"What will happen to my child after I pass?"
"I don't know how to handle a child with special needs."
"What if he/she has other medical problems."

Heck, most of these questions/concerns are made by all parents.  No one knows what the future holds.  No one knows what will happen with our children that were born "perfect".

I just can't imagine feeling so strongly about any of these concerns that would make me want to end a pregnancy.  I wonder if any of these women would have felt differently, if they had met some of the fabulous children with Down syndrome and their parents.  Some of the fabulous self advocates with Down syndrome.  The beautiful faces of the Buddy Walk video that airs in Times Square.  The normalcy of our lives.  The typical toddler behaviors that Hailey exhibits every day.  The joy her smile brings to every person she shares it with.  If they saw the love my boys show for their little sister.  If they saw the love that my husband and I have for Hailey.  If they saw the dimpled, mischievous grin that I see every day.  The deep belly laugh I hear when she thinks she is funny.  The love I feel when she wraps those tiny arms around my neck, plants that wet open mouth kiss on my cheek and then says mama. 

The chat that I stumbled upon broke my heart on so many levels.  It made me sad that those little ones were never given the chance at life.  It makes me sad that those mothers felt so strongly about the unknown and the life they "didn't think" they could handle that they chose to terminate.  It disappoints me that because of this type of thinking there might be fewer and fewer people with Down syndrome born.  It upsets me because these actions might one day have my daughter questioning her worth.  Lastly, it makes my heart hurt that those mothers will never feel the joy and love that I receive from my absolutely PERFECT daughter!

What...I'm not supposed to have these?

Hmmm...mom can carry the little one to bed, dad...you're on your own!

Shhhh...don't tell the boys.  I just want to play one round.

What do you mean my hair is a mess & I have food hanging out of my mouth?

My family thinks I am awesome!

Who could resist this face?

That chat I stumbled upon reaffirms why I blog and advocate for my child and all people with Down syndrome.  It is the reason I will never stop.  It is not realistic to think that we can change the opinions of everyone, but we certainly won't give up and we will certainly try!