Saturday, October 27, 2012

Form and Function

This has been on my mind for a while...then last weekend, we were at a Stand Up Rally for Religious Freedom, where I met several other families who have children with Down Syndrome. One mother was older, probably late 50's. She sized up Julia, then declared that I would "be fine. She seems pretty high-functioning." She then proceeded to tell me that her son with Down Syndrome was "low-functioning." I cringed. She walked away saying, "Don't have children in your 40's." I didn't want her to sugarcoat her experience, or tell me that her son can do things that he can't...but describing your child as "low-functioning?" How about let's start with his name? 

People seem to have the need to rate children with Down Syndrome on a function scale. It's not the first time someone has given me an unsolicited declaration that Julia will be high functioning. Rather than responding with, "Thanks random 70-year-old lady who has no medical training," I just smile and nod. Now it's true, I hope Julia will be verbal rather than non-verbal, I hope she will thrive in a school setting...but at the end of the day, I will love her the same no how matter how much or how little she can do. And I hope others will, too.

Even within the Down Syndrome community, there can be competition among parents about whose child is the least Down Syndrome-y. I'm not kidding. You'll hear parents bragging about how early their child was using sign language, or when they started to crawl, or walk, or...you get the picture. I do understand wanting to share the joy of each of Julia's accomplishments, because they don't come easily. But sometimes underneath the bragging is the desire to want to prove to others that our child has worth, too -- because of what she can do. 

This is a dangerous path if we start equating worth with ability. As you may already know, the abortion rates for babies with Down Syndrome are staggering -- many estimate that around 90% of women who receive a prenatal diagnosis of DS choose to end their pregnancy. Add to that a small but growing movement towards infanticide, that is, the killing of a child, especially those with disabilities, AFTER birth. An article was published earlier this year in the Journal of Medical Ethics, in which 2 Australian philosophers proposed that parents had the right to end the life of their child not only before birth, but also after. One of their arguments was that sometimes conditions cannot be diagnosed prenatally or are simply missed. Julia's Down Syndrome was not diagnosed prenatally; according to their logic, we would have been within our rights to request her death as we held her in our arms.

There is something unsettling about seeing a person's worth only in terms of his abilities. What if those abilities cease? Does his personhood cease, too?  

While the Massachusetts Down Syndrome Congress seeks to promote the lives of individuals with Down Syndrome, they portray life and death for an unborn child with Down Syndrome as equally viable options, following the relativistic trend of "what's good for me may not be good for you." I think ultimately because they are in favor of so-called "women's rights" in general, they don't want to single out an instance where abortion would be considered unacceptable -- even if it led to the purposeful, systematic elimination of those they wish to support. But until we reach a point where we see the child with Down Syndrome who speaks and the child with Down Syndrome who doesn't as equally worthwhile, the child in the womb with Down Syndrome and the child in our arms with Down Syndrome as the same, we are only supporting them halfway. 

Monday, September 17, 2012

2012 Buddy Walk

Team Juju Buttons is gearing up for this year's Buddy Walk for Down Syndrome. Check out this video, which highlights Juju's rigorous training for the walk.....



Thursday, August 23, 2012

Cheer Up, Julia

It's official. Julia's laugh is the cutest sound in the world. 


Monday, August 6, 2012

Friday, August 3, 2012

Guess Who Was in Town?



Julia's going through a major stranger anxiety phase right now, screaming hysterically & crawling at warp speed when her therapists come for Early Intervention & I'm not in sight. But with Elmo, she was practically jumping out of my arms to get to him!

Thursday, August 2, 2012

Tuesday, July 31, 2012

Fun Times at Mealtime

I really do think Juju's laugh is the greatest sound in the world.... :)


Thursday, June 28, 2012

Juju's a Superstar!

Check it out, Juju's picture is featured on page 218 of the newly revised "Early Communication Skills for Children With Down Syndrome." This book is pretty much the gold standard for kiddos with DS and Julia is a part of it! How cool is that??

http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-066-7

Thursday, June 14, 2012

Monday, June 11, 2012

Juju's 1st Haircut

video

What a month!


Juju's had quite a month! She's celebrated her first birthday, cut her first teeth, and moved to a new home (but much to her dismay, we found her, and moved in with her). Here are a few highlights from the last month..... 



First time swimming!

All worn out from the move

Julia's 1st haircut!

Saturday, May 5, 2012

Birthday Cake!

The beginning of birthday cake

The middle of birthday cake

The end of birthday cake. And I'm pretty sure none of it made it into her mouth!


Friday, April 27, 2012

Asleep at the Helm


Juju's a little under the weather today. I walked into the living room, only to find her asleep on her favorite toy. 

Friday, April 20, 2012

Tuesday, April 10, 2012

An Angel in a Time of Need

Today would be my father-in-law's birthday. It's the first birthday since he passed. We were very close and I miss him terribly. Not long after my husband and I got married, my mother-in-law passed away. We had just moved, and had just learned we were expecting our first child. It was a very emotional, and at times, overwhelming period. I began to wonder what I had been thinking, how could I be a mother? I didn't know how to take care of someone else. I remember praying, asking God to help prepare me for motherhood. And he sent my father-in-law.

My father-in-law was older than my mother-in-law, and he got married later in life. My husband also got married a little later in life...so while I was in my late 20s, my father-in-law was in his late 80s. He was often mistaken for my grandfather (except that one time I took him to the gerontologist, where the computer had me listed as his spouse...but that's another story for another day). My father-in-law was sharp as a tack but with his age and health, he needed some help getting around, some assistance with the tasks of daily living. He was a gift. It was a joy to have him with us, and I grew to love him very much. He was truly an answer to my prayer.

Our first child, in turn, was an answer to his prayers. Imagine becoming a grandparent for the first time at the age of 90! Our little girl was the apple of his eye. She gave him a whole new reason for living.

Eventually, my father-in-law's age caught up with him. His health had started to decline right around the time we learned we were expecting Julia. I hoped and prayed he would be there to see our next child, and thanks be to God, he was. That summer, however, he really started to go downhill. Those last weeks and days were incredibly stressful. I had never watched anyone die before. I would leave, completely drained, thinking I couldn't go back and do it again the next day. But then I would hold Julia, and snuggle with her, skin to skin, and that gave me the strength to return to my father-in-law for another day. Just as God sent my father-in-law to help prepare me for motherhood, he sent Julia to be a comfort and a shade as I watched my beloved father-in-law pass away. She's not even a year old and she's already served a tremendous purpose. She is truly a gift.


Monday, April 9, 2012

Easter Joy

Last year at Easter, I was very close to delivery. In fact, I had a very clear indication on Easter morning that labor was on the horizon. (I'll spare you the details) As we drove to church that morning, I wondered if I'd go into labor during mass. Thankfully, labor was close...but not that close.

That afternoon, we gathered for dinner with family. My sister began talking about a film she'd recently seen called Monica and David, about a married couple with Down Syndrome. It wasn't the first time she'd mentioned the film or told me I had to see it. So we got to talking about it, then I recalled the year in college where I'd volunteered with Best Buddies, an organization that pairs people up with adults with mental disabilities. I lamented the fact that the organizer of the group was paired with the bubbly young adult with Down Syndrome, while I was matched the portly older man who turned away from me whenever I spoke to him. I wanted to be matched with the person with Down Syndrome.

A few short days later, I got my wish. I gave birth to Julia. 
And now, a year later, she is my Easter joy. 

Sunday, April 8, 2012

Easter Prep

Julia had some help getting cleaned up from her big sister. She wanted to be squeaky clean for church on Easter morning (translation: I couldn't stand the spit-up in her hair any longer).





Wednesday, April 4, 2012

Learning To Crawl

Julia hasn't quite mastered crawling yet. Maybe she needs to listen to The Pretenders more.





Thursday, March 22, 2012

Yet Another Article

These people make it so easy for me to blog. They write so much better than I do, so all I have to do is link to their articles! Check out this piece by Mark Leach on The Public Discourse:

A Few Make a Rare Few Rarer: Reflections on World Down Syndrome Day

Article: Weakness That Makes Us Strong

Another great article in honor of World Down Syndrome Day. It's everything I would want to say, but better! Weakness That Makes Us Strong


Monday, March 19, 2012

It's A Girl...!

We didn't know Julia had Down Syndrome before she was born. My doctor mentioned the screening blood tests at one of my prenatal visits but I didn't follow through right away because my elderly father-in-law, who was living with us at the time, was sick and running a fever, and I wanted to get home quickly. When I mentioned the tests at a subsequent visit, my doctor said that I had missed the window, and the tests would no longer be accurate.

For me, I'm glad I didn't know before Julia was born. It wouldn't have changed the outcome of my pregnancy but I probably would've spent the remaining 6 months worrying. Shortly after Julia was born, the doctor came over and gently said he and the other doctors had noticed some features consistent with Down Syndrome. My first thought was "She doesn't have Down Syndrome, YOU have Down Syndrome." Then my husband turned to me and said he had noticed those features, as well. When they brought Julia back over to me, I looked at her again, and it seemed pretty obvious that she had Down Syndrome. It took almost a month for the results of the blood test to confirm Down Syndrome but we were operating under the assumption pretty much since she was born.

We were among the fortunate when Julia was born. We know people who have had very negative experiences before and after giving birth to a child with Down Syndrome. Doctors have said things like "You two are going to get divorced. You should've had an abortion," as they weighed and examined the newborn child. I'm so grateful that was not our experience. Everyone at the hospital where Julia was born was kind and supportive. In fact, one of the doctors at the hospital had a friend with an adult daughter with Down Syndrome...and the friend and her daughter ended up visiting Julia and me in the hospital!! It was such an encouragement.

I can see how people would be afraid of a prenatal diagnosis of Down Syndrome. It's a medical term, fraught with uncertainty. But looking at Julia, how could I ever be afraid?


Saturday, March 17, 2012

Happy St. Patrick's Day!


Juju just found out that she'll be spending the day preparing corned beef and cabbage for me!

Saturday, March 10, 2012

Why the Blog?

Maybe you're thinking "Is this going to be another one of those blogs where parents post about how wonderful their kid is ad nauseum?" Well...yes and no. Ordinarily, I would be opposed to blogging exclusively about my children, lest they grow up to view themselves as the center of the universe. I mean, I'll post photos to FB every now and then, or share a funny quote from a toddler, but a blog dedicated to one of my children...that seems a bit over the top.

That is, until you consider the fact that one of my children is an endangered species. (Wait, is this one of those weird inter-species blogs?) No, my child is not some sea turtle off the shores of Costa Rica. My child has Down Syndrome, and 90% of pregnant women who find they are carrying a child with Down Syndrome choose to end the pregnancy. In other words, only ten percent of children like Julia ever get to see the light of day. I find this statistic to be devastating. Clearly, a bleak picture of life with Down Syndrome has been painted for these women. I want to paint a different picture. I want to share the joy of Julia.




For information on prenatal testing and abortion rates, click here: http://www.ncbi.nlm.nih.gov/pubmed/10521836?dopt=AbstractPlus