Should I Keep My Baby with Down Syndrome, Or Should I Abort?

"Should I Keep My Baby with Down Syndrome, Or Should I Abort?"
With new and better genetic tests available, this question may present itself to a higher number of expectant mothers / parents each year. And this may be one of the biggest questions these parents will ever be challenged to answer. Either choice a person makes in this matter has its own deep set of consequences tied to it.

I'm addressing this question today because while reading through my "Feedjit" feed (it shows me where visitors to my blog have come from and by what search terms) I found the following:

L., Louisiana arrived from google.com on "Adasperdown Town: (Post Title)" by searching for "i am resentful because no one encouraged me to keep my daughter with down syndrome."

Upon reading that, my heart broke into a million pieces. 

When we received preliminary blood test results that our 3rd child might have Down syndrome, the doctor pushed us to have an amniocentesis. He insisted that we "find out" so that we could "do something about it."
The doctor's insistence made it very clear that he expected us to abort the pregnancy if we learned our baby had Down syndrome. This was the very same doctor who, only days before, was able to tell us that our unborn child was a girl at only 13 weeks gestation.

When the people around you expect you to react in a very specific way to something, it can be hard not to believe that they may be right. We grow up bowing to peer pressure - wearing the "right" clothes, talking the way our friends do, taking part in activities with our peers... we work our whole lives trying to fit in (well... at least most of us do). Most of us don't walk around wearing bananas on our head and floral-print body-paint paired with a skirt made from deflated balloons because it wouldn't be socially acceptable... unless, that is, you happen to be Lady Gaga. Provided you are not Lady Gaga (or simply insane) you wear clothes. Most people will go so far as to wear a certain style of clothing that reflects current fashion trends (as opposed to wearing a circa 1973 light blue polyester jumpsuit).

(Sexy, no?)

 We do a lot to fit in, don't we?

Yet a decision regarding whether or not to continue a pregnancy should not revolve around what other people expect, or even what your doctor expects, but around what is right for YOU.

But how can you possibly know if having a child with Down syndrome, or aborting that child, is the right thing for you if you have no prior knowledge of parenting a child with DS? 

The information your doctor might give you on Down syndrome might sound very frightening! Your baby could have heart defects, bowel problems, be near-sighted... and then there's the whole "mental retardation" issue. This probably wasn't what you were expecting when you decided to have a baby. How could you possibly parent such a child? Could you even love this child?

It's a lot to wrap your head around, isn't it?

I'm not going to tell you what to do. I'm not going to tell you what the "right" choice is. That's a decision only YOU can make. But what I can do is offer up some things to think about that may help you make a choice that you can live with.

That long list of "problems" your doctor may have discussed with you? Any child without Down syndrome can have some or all of those health problems too.

According to HealthyChildren.org, "About 2 percent to 3 percent of children are considered intellectually disabled (formerly called mentally retarded). Their general intelligence is significantly below average, and they have difficulty adapting to their environment"

What that means is that 2 or 3 out of every 100 children born have some form of intellectual disability. (Most of them do not have Down syndrome.) Any child can have an intellectual disability for any number of reasons. 

 As for heart defects,  The March of Dimes website reports that: "About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States." Here again, any child can be born with a heart issue - but when you are pregnant with a baby who does not have Down syndrome, doctors don't sit you down and list all the things that "could" be "wrong" with them.

Another thing to keep in mind is that many, many children with Down syndrome DON'T have a long list of medical problems. Many are perfectly healthy kids.

I've heard people say that they don't feel equipped to parent a child with a disability. (I suppose those people believe that there are some of us who grow up dreaming about having a disabled child?) 

 (Parent equipment)

The truth of the matter is that if you are ready to have a child, and the child in your belly was planned and not accidental, you are equipped. There are no guarantees in life. Even though you can find out if your child has Down syndrome before he or she is born, there are hundreds of thousands of other things that medical tests can't tell you. One of the first things you will learn about parenting (any child) is that you have to learn to parent on the fly. You have to learn as you go. 

As the mother of 3 children, I can say that it has not been harder to parent my child with Down syndrome. It has just been different. I will also add that I must also parent my other 2 kids without DS differently than each other. Because you know what? Each and every child is different and requires different things! It's true! Ask any parent who has more than one kid :-) Not harder. Just different.

Perhaps the most frightening part about learning your unborn baby has Down syndrome is simply not knowing what to expect. You may have certain ideas about people with Down syndrome, and not all of those ideas are pretty. I would suggest you not make a big decision based upon what you *think* you know about Down syndrome. Did you know that many, many people with Down syndrome now graduate from high school with academic diplomas? Many go on to have jobs and live independently? 

Are you worried about how others will treat your child? Remember, as with the rare cases of child abductions, we only hear the negative reports of the mistreatment of those with disabilities. For every one bad story, there are millions of good stories that we don't hear.

And if you already have other children, will they resent a sibling with DS? Will they love him or her? Will they be tied down by their sibling if something should happen to you? While I can not answer these questions for everybody, I can point to a study that found that "88 percent (of siblings) said they felt they were better people because of their sibling with Down syndrome." (Click Here to see the entire study.) How many kids out there would tell you that their "typical" sibling made them a better person? (Are you laughing yet?)

 In fact, here's a blog written by a wonderful woman who grew up with an older sister who has Down syndrome. It couldn't have been too bad, because you know what she did? She and her husband adopted a little girl with Down syndrome.

Another misconception is that people with Down syndrome "suffer." You might hear someone say "I don't want to bring a child into this world only to suffer." I'm happy to say nothing could be further from the truth! People with Down syndrome don't "suffer" any more than any other regular human being. In fact, my own daughter does things just to get me to laugh. She loves to laugh and she loves to make other people happy.

If you spend a few hours reading other first-hand accounts of what it is like to have a child with DS, and you still think that you would be unable to parent such a child, don't discount the possibility of adoption. There are actually waiting lists of people who want to adopt children with Down syndrome? (Click here to read an article about waiting lists for babies with DS.) While this article was written in 2006, it is still true. In fact many families are adopting children with Down syndrome internationally!

On a personal note, I'm going to interject a little story... Right now we are arguing with our school system to be allowed to have out daughter repeat kindergarten. You see, The Skink was born 10 weeks prematurely and shouldn't have had her birthday until about a month after the age cutoff for starting school. Since the school system bases starting school on a child's actual birthday, they put her in kindergarten this year. We just want her to have one more year and not grow up being the youngest in her class... BUT... since she reads well above grade level and did so well in kindergarten, the school system doesn't want to let us hold her back! See... so I can't say raising this child doesn't have its issues. LOL - just not always the issues you might expect.

I also understand there may be another side to the coin. If you are pregnant with a baby you did not plan and do not want - all medical issues aside - then it comes down to a question of your personal beliefs about abortion. It is a deeply personal decision and one you must make based only upon what is right for you.

For anyone who would like more information about what it's really like to raise a child with Down syndrome, please take a peek at the following links:

One Dad's Journey to Acceptance

My own listing of Public Resources and personal stories related to Down syndrome

Blogs by and about teens and adults with Down Syndrome

Parent Blogs About Raising Children with Down Syndrome

One mom's wonderfully written birth story

If you have found my blog because you are faced with your own dilemma, my heart goes out to you. I hope my words have been helpful in some small way. 

If you are here because you are one of my regular readers and/or already the parent of a child with DS, then you are lucky - lucky because you already know how wonderful it can be.You already know just how overwhelming your love can be for a child you probably didn't plan on and possibly didn't feel equipped for at one time in your life.

(Does this child look like she's "suffering" from Down syndrome. Um... no! She's pure awesomeness in pink!)

Am I wrong? Please comment! Please add your own thoughts if you think they might be helpful for someone faced with such a big decision. I do ask people to remember that people of all faiths and religions are welcome here.

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Sunday Shootout - Skink Style!

First, a little story from this morning.

I had heard The Skink's little voice over the baby monitor this morning and knew she was wide awake and playing when I crawled, groaning, from my bed. It would have been really nice to sleep in another hour or 4, but I guess I'll have to wait until The Skink is a teenager.

It is my belief that the teenage years are a 10 - 15 year span when humans morph into cats. Like cats, they sleep about 16 hours a day, lie around on the floor for another 3 hours and play wildly for an hour - but only when it suits them to do so. They revel in their independence and rub up against all the wrong things. See? They are cats.

Broadway is currently in his cat phase. The Skink, however, has another 5 - 6 years before she goes all feline on us.

So yeah... I dragged my sleepy tush out of bed this morning, dressed, put some coffee on and went up to release The Skink from the confines of her bedroom... but when I got up the stairs, her door was ajar. Well... her door was still a door but it was open a tad. (Do you ever argue with cars that insist "the door is ajar?" No, silly car! It's not a jar! It's still a door.) ...but I digress.

I could smell poop before walking into the room. That's never a good sign.

I pushed the door open the rest of the way and was greeted with the sight of a very poopy night-time diaper lying on the floor with a collection of used wipes all around it. The Skink was up on the changing table and Iraq was diligently using another 30 or so wipes to clean up the rest of the mess. There was poop on the changing table, on the floor, on the potty chair, on the pajamas and on the wall. So I did what any good mother should do...

I put a great, big smile on my face and said, "Oh Iraq! What a wonderful big sister you are! What would I ever do without you?" (Aside from not having to clean poop off the walls, floor, table... )

The two sisters grinned back at me, clearly pleased with their great success. I merrily told them to go downstairs and pick out what they wanted for breakfast, and I'd be down in just a few minutes because I needed to... um... put away some clothes! (Yeah! That's it. No - I'm not going to slave away cleaning up this huge mess of poo-licious disaster zone you two created. I haven't even noticed it, really!) LOL. They were both so stinkin' (and I do mean "stinkin'") proud of themselves, I couldn't possible take the wind out of their sails.

After I came downstairs and boiled my arms, the girls wanted me to take their picture together. How cute is that?

The morning went well, but by noon I was ready to sell Iraq to the gypsies. (Unfortunately no gypsies stopped by looking for a bargain on a kid.) *Sigh* The knowledge that it's a 3-day weekend has Iraq's transition issues in high gear. yay. I managed to survive without crying or the use of duct tape.

Yet, no matter how crazy it gets around here, The Skink always seems to find a way of bringing a smile to my face.

This evening she found the dress that Mimi bought for her and brought it to me, asking for my help to put it on. Once it was on, she insisted I "Take pictures!" I ran for my camera and was rewarded with some wonderful modeling!

Everybody was Kung-Fu fighting...

You gotta love any kid who will dress up and make faces just to make Mommy laugh! 

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Quick, Wet Update

I'm exhausted after a fun day at the lake, and the "writing" part of my brain doesn't seem to be functioning well at this point. Thank goodness a picture is worth 1,000 words, right?

As soon as Iraq got into the water today, The Skink wanted to follow right along, so we put her life vest on her and threw her in let her climb into the water with her sister. They had a blast!

Shortly after this picture was taken, I had to run up to the house (I'd had a lot of coffee). When I came back down, my older daughter was missing. According to my mom (who was watching the children while I was in the house), one of her neighbors swung by on a jet-ski and stole her away to go play with his granddaughter of the same age. Pretty cool when a play date starts with being picked up by a jet-ski!

The Skink was happy enough in the inflatable pool for the rest of the afternoon... though she shed her bathing suit at some point. In order not to offend my audience (or provide an unwanted source of "interest" for yucky people), I have airbrushed out certain anatomical parts in some places, and added leaves and flowers in others. 

One of the neatest things about The Skink is that a pool of water and a small green bucket can keep her entertained for hours! She spent at least an hour dumping water over her own head, and later traded the green bucket for two blue cups. Hey - whatever works, right?

I'm the queen of the bucket!  (Airbrushed! That's right... I removed my child's "chest parts." The picture was just so cute that I had to share it - these are the times I wish she had been "better dressed" for the occasion.)

After a fun, naked and watery afternoon for The Skink, we dried off and put some clothes on her. 

Soon after, Iraq was returned to us like this:

Not too shabby, huh?

OK - I'm off to bed. Wishing you all a fun and safe Memorial Day weekend!

Pedaling My Worm to Nystagmus Eye Surgery

Today was eye surgery day! But first, I want to share something funny that came home in The Skink's school backpack on Wednesday.

School work! Yes - the kind of school work all kindergarteners have at some point... but with true Skink Style! You see, The Skink has a BIG sense of humor. It comes out when she's bored of the task at hand and has an irresistible desire to spice things up. Check this out - it's like Ad-Libs for kindergarteners!

I don't know about you, but I try to plant plenty of caterpillars in my garden, but I always warn them to watch out for those seeds that crawl through the dirt!

On a more serious note, today was eye surgery day! In comparison to The Skink's last eye surgery where both eye balls were basically removed from her head so every last eye muscle could be readjusted, this one was just a simple tweak.

The Skink was born with a very severe case of Nystagmus. We don't know if it was a result of her prematurity and low birth weight (2 lbs 7 oz) or an issue related to Down syndrome. It could have been either (or both) but at any rate, her case was really bad!

 The Skink - age 2. She had to tilt her head back as far as she could to make her eyes stop wiggling.

The initial surgery was done when she was 2 years old, and we had to drive up to Pittsburgh, PA because our local doctor wouldn't touch such an extreme case. The Skink saw the doctor who developed the surgery for Nystagmus. Upon finishing her surgery (which was scheduled between a kiddo who had been flown in from India to receive the procedure from this doctor, and another from Egypt) Dr. H***** announced that The Skink's was one or the worst cases of Nystagmus he had ever seen.

I love it when doctors are so encouraging like that!

Anywhoo - that first surgery worked miracles! While it didn't fully correct the condition, it reduced the rapid movement ten-fold. Prior to the surgery, The Skink had to lean her head so her nose was facing the ceiling to quiet her eye movement enough to look straight ahead... and after the surgery she only needed to tilt it a bit to one side.

 You can see how The Skink's left eye is about 2 mm higher than the right eye. Either that, or there's something up in the sky that she's only half-paying attention to.

The purpose of today's surgery was to lower her left eye by about 2 mm.

Last night and this morning we put drops in The Skink's eyes to dilate them - which gave her a great excuse to look very stylish on the way to the surgery center! 

(It would have been inappropriate to bring my big, new camera to the surgery center, so many of the following pictures were taken with my old Kodak Easy Share camera - which I can swiftly hide in my bra at the first sign of an angry nurse!)

 Walking with Daddy into the Surgery Center. Note the spiffy new cow backpack which is perfect for carrying...    cows.

Then, of course, it was time to hurry up and wait. But that was fine with The Skink - she started her own little dance party right there in the waiting room! Smart Daddy brought along a Victorious DVD, so after the dance party ended, The Skink enjoyed watching a bit of her favorite show. 

I had been really worried because the surgery was scheduled for 11:15 a.m. and The Skink wasn't allowed to eat or drink after midnight the night before... but do you know? She never once complained or begged for food! Apparently dancing was far more fun than eating! 

When we finally were taken to a room, The Skink was given some sleepy-juice... which she resisted with all her might! She didn't want to miss out on all the excitement!

Checking out the 2 ID bracelets on her ankle.

Can't... go... to... sleeeeeeeeep...

And then somebody came and took her - she wasn't asleep, but went along happily - eager to have a new adventure!

The surgery took about an hour and a few minutes. The doctor came back and said that everything went well (considering the scar tissue he had to work around) and said that her glasses prescription has changed just a little. She's slightly less near-sighted! Hooray!!

Do I look a tad tired?  I can't imagine why...

Juuuust starting to wake up. Feeling a bit cranky - but who could blame her?

And once the bulk of the grogginess from the anesthesia wore off, she set her sights (her slightly less-nearsighted sights) on Goldfish crackers and apple juice! It was really rather amazing just how happy she was once she really woke up!

Once we got home, she wanted to pose and make model-pouty-faces for the camera! Silly stinker!

See this? This is my good eye!

Children are amazing! While it looks like it would hurt like heck, this kid bounced around for the rest of the day - just as happy as could be. She ate like a horse and went right back to her regularly scheduled Skinkiness. Now I just have to figure out how to break it to her that I'm not sending her to school tomorrow looking like she was hit by a bus. She'll be horribly disappointed!

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One of Those Amazing Days

Yesterday was one of those amazing days.

One of the best things about life is that you just never know when one of these fun, amazing days will just pop up! You can't necessarily plan them and you can't make them happen. They just happen on their own, which only adds to the sheer amazingness of it all.

Yesterday started out like any other day. Got the kids off to school, took care of a few odds and ends around the house, took The Skink to the doctor for her eye surgery pre-op check up. Isn't it funny how some of us special needs moms just throw stuff like "pre-op check up" around like it's a normal daily activity? While it is by no means a daily activity, it ain't our first rodeo, either. The Skink is getting some adjustments made to the position of her left eye next week. In comparison to the major eye surgery she had when she was two, this is small stuff.

But anyway, back to the Amazing Day thing...

My friend V has a small farm where she raises chickens, ducks and her two daughters. A while back she invited us over so my girls could see her chicks and ducklings and meet her girls, so when The Skink and Iraq got home yesterday, off we went.

Upon meeting, the girls all became instant friends. The four of them went off and played happily until it was time to go out and see the birds. The Skink was quite content to admire the chickens and ducks from a small distance, but Iraq was ready to get some good chicken cuddles!

The girls had a great time helping to collect fresh eggs from the hen house. Apparently The Skink didn't feel right about taking the eggs away from the chickens. She tried to put one egg back in, but it was too far to reach... so she just dropped it in. (Ooops) We took the surviving eggs back up to the house where snacks were waiting for us.

Then the girls were off again, this time barefoot and with slices of delicious, sweet watermelon in hand. There's just something about being in the country that seems to set a child's spirit free. Iraq has come a long way with her social issues and anxiety, but yesterday - out in that wonderful country setting - she was just another little girl. As V and I sat talking, we could hear the happy voices and giggles of the girls as they played together. Just four little girls having fun and enjoying being little girls.

All too soon, V's younger daughter had to get ready for her weekly riding lesson. The news was met with groans and disappointment. Yeah - they were having that much fun! So on a whim we decided we would all go to the barn to see the horses.

While L2 was having her lesson, the other three girls wasted no time getting as loud and giggly as they possibly could.

In fact when it came to having fun, they did such a great job that we were asked to take them a bit further away... where they wouldn't be such a distraction to the horses!

Lucky for us, a country girl's dream was waiting in the next meadow!

Yup! A real rope swing hanging over the most picturesque babbling brook in all of Virginia!

And just up the hill, there was a horse swing cut from an old tire and hanging from a shady Oak tree!
If this isn't heaven, then I sure hope heaven has a carbon copy of this place!

This may be one of my all-time best shots! I get a big, goofy grin from ear to ear when I look at it:

Every girl should experience the joy of running barefoot through the grass, swinging from a rope on a tree, splashing through a cool mountain brook and just... being a girl! I just wanted to bottle the day. (Lucky for me, camera's are a little like day-bottling devices!)

These are the kind of amazing days I wish would never end. As the sun started setting over the Blue Ridge mountains, the girls let the cool stream rinse the mud from between their toes. Shoes were gathered and put on damp feet and we headed back to the car.

This morning, after asking (again) when we can see L1 and L2, Iraq got ready for school, helped The Skink on to her bus and came back in the house to spend a few minutes with me. We cuddled up on the couch and talked about the fun she had with her new buddies. We talked about how great it is to have friends. Iraq has a good friend at school this year. It's really the first time she's been able to maintain a peer relationship like this. The kid is blossoming - I tell you!

Before leaving for the bus, Iraq went up to her room and came down with one of her treasured lip glosses. These are some of the top items she is known to hoard and steal due to her Asperger's syndrome.
"Are you taking that lip gloss to school today?" I asked.
"Yeah. I'm going to give this one to R, because she's my friend!"

It's pretty cool when an amazing day lasts all the way through to the next morning!

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Do you have some special memories from your own childhood? What are some experiences you think every kid should have? I'm looking forward to reading your responses!

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