Menopausal Mom

This is actually a post about People First language….

Again, like a lot of what we have learned along this journey with Joey, I had not thought about People First language before he came into our lives.  I certainly don’t expect our friends or family to have thought about it either.  However, now that he is here, it’s become really important to me for people to see Joey as a person first.  An innocent and precious baby.  Not a diagnosis and not a label.  Oh, I struggle… do I say something?  Do I correct people?  Sometimes, sometimes not.  If I ever do say something, please know that it’s out of love—and respect.  Both for you and for Joey and anyone else like him.

It’s really not that complicated. To me it means not labeling or identifying someone with their difference first.   Ultimately, a diagnosis or descriptor shouldn’t really be necessary at all. 

Once I thought about it this way, it made so much more practical sense—you wouldn’t say, “Well, menopausal mom called today and wanted to know what you want to do for your birthday.”  You wouldn’t say gout Sally, deaf Grandpa or one testicle Uncle Bill —mostly because that would be impolite and might hurt Uncle Bill’s feelings.

People first.  It’s just good manners, right?  It’s about putting the person before the disability or difference.  Ultimately, it’s really about being polite and considerate of the person.

  

It’s not Down syndrome Joey—it’s just Joey.  It’s not a Downs baby—it’s a baby. 

Things I’ve learned:

• ·         It’s Down syndrome rather than Down’s syndrome
• ·         People with Down syndrome should always be referred to as people first.  Instead of a “Down syndrome child” it should be a child with Down syndrome.
• ·         Down syndrome is a condition or a syndrome, not a disease.
• ·         People “have” Down syndrome, they do not “suffer from” and are not “afflicted by” it.
• ·         An “intellectual disability” is preferred to the term “mental retardation”.

So, in this adventure of learning and educating myself while also trying to advocate I sometimes tread into the scary waters of speaking up and practicing some of these things I’ve been learning. My latest effort was correcting a person who lives in our neighborhood who I ran into when I was trying to enjoy a girls’ night out.  While catching up at the bar, she said she heard I had a “Downs baby” and then she asked if I was “doing okay” with that.  I had just ordered my glass of wine, but she had clearly already enjoyed hers.  I tried in the nicest way possible to say, “Well, Joey is a baby who has Down syndrome.” And then in my super sober state I tried to explain people first language to her.  That’s when our mutual friend Adam spoke up sensing that my efforts were in vain and that the situation was getting increasingly awkward and pointed to his boyfriend and said, “I still call him gay Rob sometimes.”  Thank you for breaking the ice for me, Adam!   One step forward…two steps back…

The adventure continues.

To blog or not to blog…

Well, I’m not really a Cowgirl—only in my mind.  I was born in Western Nebraska, so I do possess what I think qualifies as a Cowgirl approach to life.  You know—when the going gets tough, you stand up, dust off your jeans, straighten your hat and get back on your horse. 

I love reading.  I also love writing.  As a kid I wanted to be a news reporter.   In grade school we had to write to a celebrity for English class.  I chose Diane Sawyer… and she wrote back!  Instead of journalism I went the Law School route.  But here we are again.  The siren song of the blogosphere and the possibility of having a voice, an influence and an audience—it is just too great to ignore.

In February 2010 we found out via a CVS testing for complications in the pregnancy that our second son, Joseph, had Down syndrome.  During this past year I have turned to the internet and other mom’s blogs daily for information, inspiration and hope.

In turn, I hope I can provide a place for other people to turn to for more information on Down syndrome, open heart surgery/congenital heart defects, nystagmus, aspirating, plagiocephaly, torticolis and many of the other challenges that sometimes come along with having Down syndrome.

I also hope I can provide a place to be an advocate for Down syndrome, a place to provide education and to dispel myths.  Cowgirl Up! is a forum to celebrate Joey and all of his accomplishments and his miraculous life.

In all fairness, we can’t leave out his adorable, big brother, Tommy, so he will also be featured.

Finally, since having a son who happens to have Down syndrome isn’t the only thing going on in our lives or in the world, I also want to provide helpful hints, favorite things I find and last but not least—Reviews!!  Book reviews, movie reviews, magazine reviews and more. 

I hope you enjoy and either learn something new or pick up some helpful information, or even better—notice someone else who might be a little different than you and give that person a chance.

Okay—time to just pull the trigger and Cowgirl Up!

World Down Syndrome Day

Today is World Down Syndrome Awareness Day.  Until last year I might not have even paid attention to this day.  However, almost one year ago, while pregnant, we found out that our son possesses an extra chromosome, you know, designer “genes”.  It’s also called Trisomy 21 or Down syndrome.  All of sudden, we were in the club – and what an amazing club it is!

12 weeks into the pregnancy we had an ultrasound and we were told that he had a large, septated cystic hygroma on his head, excess fluid surrounding his body and that our pregnancy had very little chance of lasting past 20 weeks.  A CVS (chorionic villus sampling) test confirmed Joey’s extra chromosome. 

Miraculously, at 22 weeks we found out that the cystic hygroma had mostly resolved itself and the fluid around his body had mostly dissipated.  Suddenly Joey was starting to defy the odds and have a fighting chance of surviving.

At 24 weeks we learned that Joey has a congenital heart defect that would likely require surgery.  We had multiple echocardiograms throughout the pregnancy and once he was born, his ASD, VSD and leaky mitral valve were all confirmed.  Finalizing his open heart surgery plans is currently underway.

Twenty-eight weeks in, I was diagnosed with gestational diabetes and the fluid that was seen at 12 weeks had returned.  We also learned that fluid was building up around his abdomen and this new diagnosis was “fetal ascites”.  During that visit I received steroid shots to help Joey’s lungs mature because of the possibility of needing to deliver that week due to his excessive fluid on his body.  For the rest of the pregnancy we had 4-5 doctors’ appointments a week to monitor and follow Joey’s progress along.

By 34 weeks we were told once again that we were going to deliver because the ascites had worsened (his abdomen measured about 6 weeks larger on ultrasound because of all the fluid).  Once again our doctor called and said that we were not going to deliver then, but that we would be delivering no later than 37 weeks.  Whew!  To have almost made it this far was an incredible feat given the dire odds we were initially facing.

Finally, at 37 weeks, on August 27, 2010, Joseph David was born via C-section.  After months and months of holding my breath, I finally let it go.  I had worked with my doctor in advance and let him know that I wanted everyone in the delivery room to know how excited we were for Joey to arrive and they were all incredible.  He came into the world crying and weighing 7 pounds, 11 ounces.  He was briefly on oxygen, but did not have to stay a single minute in the NICU.  He was under the bilirubin lights for almost 4 days, but all of our fears of immediate surgeries and Joey not being able to breathe on his own quickly subsided.  For four days we welcomed family and friends who visited, celebrated and welcomed our little miracle son.

This was just the first part of Joey’s journey.  In the past six months, we have had adventure after adventure (that’s my code word for long days in doctor’s offices) and he continues to amaze us every day.

 

One of the things I first learned when I started reading about Down syndrome is that almost 90% of babies who are diagnosed prenatally as having Down syndrome are aborted.  I had no idea.  I struggle with this number and I find it so horribly sad.  Our prenatal diagnosis was definitely sad and as many others who have travelled this road before say—it rocked our world.  But as we go along this journey I realize that the sadness and grief I felt was much more about me and my idea of what my child should be like.  The sadness was based in ignorance and fear.  Ignorance about what having Down syndrome means.  Fear about what his life would be like.  Fear about what my life would be like.  Fear about other kids picking on him.  Fear about people staring at him or not wanting to give him a chance because he looks different.  That is a lot to think about when you are pregnant or have just had a baby.

When I was pregnant I read a book called “Road Map to Holland” by Jennifer Graf Groneberg.  Jennifer is a mom who had twins and found out at birth that one of her sons has Down syndrome.  Her book is incredibly well-written and chronicles the twins’ first two years of life and what living with the diagnosis meant to her and her family.  Her insight was a great comfort to me during my pregnancy.  After I read it, I took the following paragraph from the book and taped it into my daily planner—the passage reads:

            I envision all that she has ahead of her—unwrapping her baby, and recognizing her own long fingers in his. Sweet kisses on dewy-soft skin.  Watching her son sleep on his father’s chest, or in her arms.  Little grunts, tiny smiles, the first coo, a laugh that is so beautiful you laugh, too.  I missed so much of this with Avery, irreplaceable moments lost to sadness and worry.  It didn’t have to be this way.  I wish I had known better. I wish I had known all I had to do was love him.

All of a sudden the prospect of having a baby who happens to have Down syndrome seemed so much easier, after all, I had the easy job, all I have to do is love him.

If I could talk to any of the moms who are expecting a baby who has Down syndrome, or any of the moms who find out in the delivery room that their baby has Down syndrome, I would tell them not to worry—all you have to do is love them.