Liebster Award: When You Wish Upon A Mass Of Incandescent Gas…

I’m attempting to make one Liebster related post a day.  I must apologize; I really feel like the quality of my work is suffering because I can’t take the time to review and edit as much as I’d like.    I”m just really excited to get to my nominations!  

Bright Blue Line asked : “You are granted 1 wish (make it great, but it cannot be to have 9 more wishes), what is that special wish?”

Really, I’m not a big fan of wishing.  I don’t believe that if I see a shooting star or throw a penny in a fountain that whatever I wish will magically come to fruition.  I also don’t think it’s a good use of my time to sit around fantasizing.  No, I  prefer acting.  If I want something, the most probable way to make it so is to take active steps towards achieving my goals. Some people like to believe in magic, and that’s fine with me – I’m just not one of those people.  Since this is a hypothetical question…

20130425-222829.jpgOnce, I was watching a documentary and I heard a parent of a gay child say that she wished her child weren’t gay – not because she thought it was wrong, but because being gay would make her child’s life harder. I had similar thoughts when I received Evelyn’s diagnosis. Truthfully, I did feel something was “wrong” with her, and I believe that mother thought something was “wrong” with her son. Both of us were mistaken and were making short sighted wishes. Her child’s sexuality was part of who he was, just as Evelyn’s Down syndrome is part of who she is.  I love Evelyn as she is, Down syndrome and all.   

Therefore, I wish for acceptance and appreciation for all of the intricacies and nuances of each human being. Seems pretty big unless you think about taking one step at a time – opening one mind at a time. Besides, with your help, my wish will come true much faster.

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Liebster Award: Using My Powers For Good Instead of Evil

The first Liebster-qualifying question posed by Bright Blue Line, “What Inspired You To Start Blogging?” is addressed briefly on my “Get Down With Me” page. I’ll try to expand without boring you.

I’d like to preface this by saying that I am pro-choice. Whatever your position, I respect your right to your opinion and I expect the same from you. This post is NOT an invitation to debate that issue. I just don’t want what I say next to be misinterpreted as an argument for outlawing abortion. It is simply an argument for access to information.

Currently, 97% of pregnancies testing positive for Down syndrome are terminated. Ninety-seven percent. There are hundreds of thousands of people with Down syndrome living in the U.S., but most of those people are not part of that other three percent. Most people with Down syndrome were diagnosed after birth. All that is changing. There are now several tests on the market that can screen for Down syndrome earlier, more accurately, and less invasively than ever before. Easier, more efficient screening means more prenatal diagnoses – and more terminations.  This information was what pushed me out of my comfort zone and into the blogsphere.

I don’t have a problem with prenatal testing; I had prenatal testing. However, have you ever heard the phrase “knowing just enough to be dangerous?” It means a person has knowledge, but just enough knowledge to provide a false confidence, and not nearly enough to know all the possible consequences of their actions.  When medical professionals provide expectant parents with a diagnosis but no additional information about Down syndrome, they are really giving them just one piece of the information they need to make an educated decision. Prior to testing, my husband and I had discussed the possible outcomes and decided that we would not terminate the pregnancy if the baby had Down syndrome.  Yet, when I heard the diagnosis, my first instinct was to terminate because I didn’t know anything about Down syndrome. Like most people, I was afraid of the unknown.

I took to the internet, intent on informing myself before making such an important decision. I found a lot of statistics.  I found reports of all the medical problems that could affect a person with Down syndrome. I found a lot of outdated information. I found a lot of postings from other mothers and fathers looking for answers, just like me.  I did not find what I was looking for – What is it like to live with Down syndrome?  What does it take to raise a child with Down syndrome? Ultimately, thousands of families in the U.S. alone will be put in that same position each year.  I hope when they Google “Down syndrome diagnosis” my blog will pop up, along with the others that have started showing up on the web in the last few years. I hope that I am helping these families make an informed choice. I believe that some of them will choose to continue their pregnancies.  I am glad I did, and I think other families will feel the same.

Basically, I decided to use my powers for good instead of evil.

For now.

Photo credits: josavill.com, theidsc.org

Be An Ambassador For Social Evolution: All The Cool Kids Are Doing It

Every parent has that fiercely protective instinct. Mine makes me wrathfully stink-eye a small child at the mall play area because they pushed my pride and joy off the slide. It made me seriously consider locking my offspring in the house to guarantee safety from serial killers, pedophiles and bullies.  Even before Evelyn was born, this instinct kicked into overdrive. I was angry! I was angry at the children who would exclude my little peanut on the playground! I was furious with the elderly people who would assume she should be institutionalized! I was peeved with the everyday people who would experience discomfort at her proximity, or openly stare like she was some sort of circus side show attraction!  I had all sorts of preconceived notions and I was violently vindictive towards these hypothetical attackers who would dare hurt my child. I spent countless hours building an arsenal of angry rhetoric and biting replies to barrage these attackers before they even entered our lives.

After her arrival into this world, though, I experienced much less of this than I expected. The attacks I predicted, for the most part,  never came.  It took a while, but I began to relax. When I did, I realized what a toll all of that anger was taking on me. Constantly caught in a state of agitated readiness, waiting for attack – It was exhausting. I let my guard down and I began to enjoy my life again.

This isn’t to say that those things haven’t or won’t happen. They do, on occasion, and I’ve really had to look within myself for guidance in these situations. I have to remember before I had the pleasure of knowing Evelyn.

I always considered myself to be open minded. In hindsight, I see that was not the case. I couldn’t fully understand and accept what I had never experienced. Evelyn is capable, perceptive and loving – she is like any other child, in most ways. I now get that people with disabilities are just people. I don’t need to put them up on a pedestal and I certainly don’t need to pity them.  It’s hard for me to admit when I am wrong, but I was wrong.  I am ashamed of my previous thinking, and grateful that I have been shown the truth.

Unfortunately, I only gained this understanding from knowing someone with a disability. Our society doesn’t emphasize this side of disability – that people with disabilities are only people – no more, no less, and not much different from people without disabilities. I now realize that my anger was futile, but what else can I do?  As a society, we fall short.  How can one person change a whole society?

Honestly, most people mean well. I’m not talking about the Ann Coulters or the Rush Limaughs of the world (Relax – I don’t mean conservatives, I mean people who refuse to admit it’s wrong to use the slur “retard”), or the abusive educators or Eugenicists. I don’t refer to those who unapologetically choose hate. I am referring to the ignorant.

You see, in our society, ignorance has incorrectly taken on a negative connotation. To be ignorant is to simply not know. There is nothing wrong with not knowing, unless one is given the opportunity to learn and refuses. I don’t believe deliberate ignorance is the norm. On the contrary, most people are unintentionally ignorant – like me. There is so much I, myself, still have to learn; I certainly don’t want that held against me. I prefer for people to share their knowledge with me. I have an unquenchable thirst for understanding and I desire to grow as a person. I believe most people feel the same.

Then, how do I intend to alleviate ignorance? Simply by being not only an advocate for my daughter – but an ambassador, as well. To be both requires patience, thoughtfulness, and practice. I must calm that primordial, protective response and think before I speak. I am not, by nature, a “people person.” I am an introvert, but every day Evelyn and our family get out there, we provide an opportunity for society to see what life with Down syndrome is REALLY like. Every friend we make, every coworker, every person we come across is an opportunity to enact change.  Each Cub Scout meeting, trip to the grocery store, and playdate is a chance for people to get to know us and our family – to put a human face on disability. I don’t approach the afore mentioned situations as conflicts; I address them as opportunities. This change in prospective provides the  possibility to change the perception of my daughter which, in turn, improves her life. In order to accomplish that primeval goal of protecting her, I must quiet the instinctual response it inspires in me. If I am angry, aggressive, or admonishing, it will only serve to further alienate my audience by enforcing the perception that we are unalike. If I attack, they will defend.  Instead of encouraging an adversary, I prefer to establish an ally. If I am patient, gracious, and friendly, common ground can be found.

Undoubtedly, there are some people who take comfort in their ignorance. It provides a false sense of superiority and security. These people won’t be swayed by a smile and a few carefully chosen words, but an angry barrage of how-dare-you’s is equally ineffective.  I believe these people are the minority and  most people will respond in kind if they are approached with an open heart and mind.

Therefore, I have decided to let go of my anger and treat people how I would like to be treated – with respect, kindness, and empathy. It’s harder than stomping around in jackboots, threatening wrathful vengeance (and maybe a little less fun), but it just might be more effective. Perhaps the way to encourage respect, kindness and inclusion for my child is to kindly and respectfully include others in my life. Instead of waging a war for social revolution, I’m engaging others in the conversation that is social evolution.  I’ll let you know how it goes.

You can check out John Franklin Stephens, an amazing ambassador for social evolution, here. His ability to take the high road and speak thoughtfully and respectfully to someone who didn’t earn it is inspiring.

Three 21st Chromosomes Walk Into a Bar and the Bartender Says, “Why the Cognitive Delay?”

Photo courtesy of Noah’s Dad

The 21st chromosome affects up to 2% of a person’s overall DNA.  That may be small, but it is not known entirely what that 2% affects.  How integral is that extra copy of the 21st chromosome to who my daughter is?  It obviously shapes her beauty.  How does it affect her view of the world, her personality?  Yes, Evelyn is so much more than Down syndrome, but it is certainly a part of her – one that I would not change, because then she wouldn’t be Evelyn.

I did not always feel this way.  When I was pregnant, even through her infancy, I would have jumped at the opportunity to “cure” Evelyn’s Down syndrome.  It certainly would have made her life and our’s easier.

Then, as Evelyn grew into a toddler, her personality emerged and I began to understand her more.  I came to realize Down syndrome is not an affliction to be cured; it is not a disease.  True, some health issues sometimes associated with Down syndrome can be life-threatening, but the syndrome itself is merely a collection of symptoms – most of which have no lethal inclination.   Life without Down syndrome might be easier, but I am certain it would not be better.  On the contrary, I believe Down syndrome has improved my life, as I have written before.  I wouldn’t want to eliminate that extra chromosome because I think it would fundamentally change who she is.

I will, however, do anything I can to improve her life.  Evelyn wears orthotics to help train her muscles to work against her low tone and increase her mobility.  She has ear tubes to improve her hearing, allowing her to use all of her senses to learn.  Evelyn participates in early intervention services that provide physical, speech and occupational therapy. All of this is intended to help Evelyn achieve the fullest life possible –  hopefully one of independence and inclusion with her peers.

I recently read about a study which concluded the third copy of the 21st chromosome limits the amount of a specific protein in the brain. This protein helps neurons to work properly.  With this knowledge, the scientific community is one step closer to thwarting the effects of Down syndrome on the brain’s ability to absorb and store information.  I can’t help but be hopeful that soon there will be a safe, effective therapy to grant Evelyn the ability to learn and retain much more than her current capabilities.  A treatment that would allow her to learn to drive a car, graduate from college, and live independently.  Of course, some people with Down syndrome already do all of these things, but it is not the norm.

I don’t believe this would change who she is, essentially.  Certainly, it would make her life easier.  Better?  Maybe.  I’m open to the possibility – as long as she is still Evelyn.

Happy Birthday and I’m Sorry You Don’t Have Down Syndrome

IMG_0763Today is my Adelle’s first birthday! She is whip smart like her brother, and fiery like her sister.  She loves sneezing and dancing and she thinks that the proper farewell to anyone, anywhere is “Bye-bye, Daddy!”  When she looks at a book or watches a video, she doesn’t sit – she takes a knee.  Delle is a serious observer, just like her father, watching and absorbing everything around her.  She both worships and fears Evelyn, who is her only playmate and her only persecutor.  I am pretty sure she thinks Brady is just some little guy who happens to live in our house.

Last night, after celebrating World Down Syndrome Day with our local Down syndrome association, I came home to bake her birthday cake.  I made her the same cake my grandma made for me every year, at my request – a Jell-o cake.  As I enjoyed the sweet, strawberry scent that filled my happy, little house, I wondered how it will be for her, and her brother, growing up with a sister with Down syndrome.

I don’t mean that in the way you may think.  I don’t worry she will be a burden to her siblings.  I hope all three will consider it a privilege to love and support each other, as my sisters and I do.  No, my concern is that somehow my other children will feel…well…ordinary compared to Evelyn, constantly sitting in the shadow of her Down syndrome.

For instance, each March, we celebrate World Down Syndrome Day, and every October we build a Step Up team that is, essentially, a parade for Evelyn and Down syndrome.  Additionally, we attend fun parties and playgroups all because Evelyn has Down syndrome.   Then, we sit in waiting rooms at doctors’ offices because Evelyn has down syndrome.  If I add up the hours my children spend waiting in doctors’ offices…actually, I don’t want to.

IMG_0024As an adult who has survived adolescence, I know all the pains of growing up that Brady and Adelle will experience will be visited upon Evelyn two fold, if not more.  While they may occasionally be ignored, mocked or underestimated, Evelyn will face those obstacles on more occasions and, most likely, well into adulthood. I also believe they will be better people because they love her.  They will presumably be more patient, empathetic, and considerate than their peers.

However, they are children who can’t and shouldn’t know that yet.  Therefore, I worry they will constantly feel outshined by Down syndrome.  Good or bad, when people meet our family, it is probably what they notice first.  Somewhere in it’s shadow lie my other wonderful children, as unique and exceptional as Evelyn.  Just as I don’t want Evelyn to feel defined by her Down syndrome, I don’t want them to feel excluded by their lack of it.

Today, as I honor my last born by hanging streamers and balloons, lighting a candle, and singing with family and friends, I ponder a question:  In my quest to carve out a space for Evelyn in this world, how can I be certain my Brady Bean and my Delle-Belle know they are just as important?

I Am Three Years Old


AAAAAAAAHHHHH!
AAAAAAAAHHHHH!

My name is Evelyn. I am three years old. I am stubborn, “spirited”, and funny. My idea of a perfect evening is curling up with a good board book, some goldfish crackers and a nice vintage juice. I enjoy the company of stuffed monkeys, the intelligent drama of “Signing Time,” and the musical styling of The Laurie Berkner Band. My hobbies include dancing, playing dress up, coloring on anything but paper, and throwing anything that is not a ball. Just for fun, I talk in a voice that sounds like Linda Blair in the The Exorcist. I excel at annoying my brother, tormenting my sister, and sticking both fingers up my nose at the same time in the car and saying “Mama – Look!” – because I know she is driving and there is nothing she can do about it.

Take a picture of THIS!
Take a picture of THIS!

I am adorably and alarmingly audacious. I stack books on boxes on small chairs on coffee tables and try to convince people it’s a good idea for me to climb up there. I jump into the bathtub like it’s an Olympic swimming pool. I dance in public – I don’t care who is watching! I once rode solo in a shopping cart across the Lowe’s parking lot and I love taking off on my own to explore large, crowded public spaces.

Like most three year olds, I think I am the center of the universe. So many people love me, and I’m pretty sure their role in life is to orbit around me and fulfill my every need and desire. They have been caught in my gravitational pull since the universe was created, and will stay that way as long as I exist. I make the rules in this universe – I think that if I cover my face, you can’t see me because I am a really good hider. And like most three year olds, I like to do things my way. On my first day of school, I refused to stand up and have my picture taken, I don’t like when my foods touch each other, and I am way too cool to hold my mom’s hand.

1st day of school
1st day of school

Also like other three year olds, I am not a “little angel” – I am a unique person with complex thoughts and emotions. Please, don’t take away my individuality by assigning me a personality based on my chromosomal make up. Saying that children with Down syndrome are sweet and loving all the time is equivalent to saying Asians are good at math, Jewish people are great with money, or African-Americans are good at sports. Just because the trait that is assigned is not negative doesn’t mean it is true and it doesn’t mean it is okay to define a person based on just one aspect of who they are. Yes, I am fearlessly friendly and I give the  best hugs – when I feel like it. But I will also unroll the toilet paper or shred an entire box of tissues, given the opportunity. Because that’s who I am – I am three years old!

In honor of World Down Syndrome Day, please watch this video from the International Down Syndrome Coalition to meet a lot of other people and allow them to tell you who they are. They are not three years old (mostly), and they are all different. I know you will watch it – because I make the rules in this universe.

So, You Just Found Out Your Baby Has An Extra Chromosome…

I’m sure you are shocked, scared, overwhelmed and grieving – I know I was.  I was 11 weeks pregnant the first time I heard that my baby might have Down syndrome.  It was confirmed at 18 weeks.  I considered terminating my pregnancy, but I was lucky enough to have well-informed medical professionals and a local Down syndrome association who helped me to learn about the realities of life with Down syndrome.  I know though, that many people are provided little to no information, or incorrect information.  There are several great websites that can help you find out more, including ndss.org and nads.org.   They will help you find support and can give you lots of factual information.  But you can start here with a few of the most important things to know when receiving a Down syndrome diagnosis.

IMG_1159First, please understand that this does not define you, your child, or your family. My family is normal.  We have exciting Christmas mornings and nervous first days of school.  My kids play and laugh and fight together.  We go to parent-teacher conferences and way too many after school activities.   We have barbecues and birthday parties.  We have tons of friends.  It may seem impossible to you now, but Down syndrome is merely a footnote in your family’s story.

This next part may be hard to hear but… You are not special.  Well, maybe you are special – I don’t know you.  But that’s not why your child has Down syndrome.  I am a regular person.  I yell at my kids, I swear too much, and at times I feel overwhelmed by parenthood.  I’m not a saint.  You were not given this child because, “God knew you could handle it.”  Anyone is capable of raising a child with Down syndrome.  If I can do it, you can.  Parenting works like this: Take things one step at a time; what you don’t know, you learn; love your child.  None of that changed just because my child has Down syndrome.  She makes me laugh, she drives me crazy, sometimes I am AWESOME… and sometimes I screw up – just like with my other kids.

However, you will become a better you.  Becoming a parent changes you, and becoming a parent of a child with a disability is even more affecting.  I had a much narrower view of the world before my daughter was born. I now practice empathy instead of sympathy, and I judge people by who they are, not what they can do. I’ve opened my life to include people I never noticed before.  I stopped letting fear of saying the wrong thing prevent me from getting to know all different kinds of people.  I don’t value my journey by where it ends or how quickly I arrive, but by what happens along the way.  My world is bigger, my life is fuller, my heart is freer, and I am happier because of this change in perspective.

485207_10200638402467277_2047462886_nFinally, and most importantly, you are not alone!  There are hundreds of thousands of families in the U.S. who have taken this journey – millions worldwide.   You really need to meet some of these people!  We have been where you are and we are living proof that life with Down syndrome is not much different than life without it.  You can contact your local Down syndrome association or join an online group and talk with someone who understands.  We are here to support you.

I’m not saying life with Down syndrome is all rainbows and unicorns – but life isn’t all rainbows and unicorns.  As someone who’s been where you are, I just want you to understand this:   My life is good. 

 

If you already love someone with Down syndrome, please share anything else you wish you would have known when you first met them.