Hmmmmm

My subscription to Reader's Digest recently ran out, so there are only 2 magazines that actually come to my house. Both of them are free, otherwise, they wouldn't come either. One is a local homeschooling magazine that I rarely read because it just makes me feel guilty and the other is a magazine that I devour, not because I necessarily agree with all it represents, but because I find it fascinating.

It's called Above Rubies, self published by Nancy Campbell, and its stated purpose is to encourage mothers. There's a whole lot about eating organically healthy and other things that I tend to skip over, but I really enjoy the personal stories from her readers. Many of them have a certain "I've got it all together" tone that I find annoying, but it rarely makes me mad.

Until now.

This issue, there is a section of personal stories about women receiving the "Wrong Diagnosis" while pregnant and how they responded. The first story sent my normally very low blood pressure through the roof. Of course, the "diagnosis" was Down syndrome. They used the term "diagnosis" very liberally as most of the women simply had the early blood screenings which indicated they had a higher risk of Down syndrome, and declined the actual testing that would have given an actual diagnosis.

Of course, because of their prayers and faith, they did not have a baby with Down syndrome. 

I wrote a letter to the publisher. I haven't received a response. Shocking.

Dear Nancy,

I am a long time subscriber and avid reader of Above Rubies magazine. I usually devour the magazine from cover to cover as soon as I get the chance. Issue 83 was no different for me. To say I was disappointed is an extreme understatement. From the moment I read your intro in the section titled "Wrong Diagnosis",  I had a bad feeling about where it was going. While a bit inaccurate (no physician would encourage termination for Down syndrome without a confirmed diagnosis), you are correct that the medical community does indeed often push for the termination of Down syndrome pregnancies. In fact, the current estimation here in the US shows 92% of confirmed Down syndrome pregnancies are terminated. I have one friend who was told of her positive amnio results and immediately informed, "I will call and schedule your termination for as soon as possible." When she adamantly declined, her obstetrician's office phoned her THREE more times to inform her that she was running out of time to legally abort. It is a travesty.

However, when I read the individual testimonies, my heart sank. It is no wonder to me that the world finds little worth in individuals with Down syndrome, when we in the Body of Christ believe it is something to "fight and pray" against (My Prayer Warriors) and that only babies born without it are "perfect" (My Prayer Warriors) and "healthy"(Infertile!, I'm Glad We Didn't Listen). I found the tone of some of the articles to be bordering on arrogant, indicating that the reason their babies were born without Down syndrome is because of the prayers they offered or the attitudes they maintained during the pregnancy. I think that kind of thinking is not just offensive to me, but also to our Heavenly Father.

Here is my story: I have always refused the routine blood tests which screen for things like trisomies, spina bifida, and cystic fibrosis. I know that these are not definitive tests and the only way to be sure is to have an amniocentesis or CVS. At the level 2 ultrasound for baby #6, the technician thought she saw something of concern with the baby's heart. Because of my age, 38, I was sent to the maternal fetal specialist for another scan. There, the heart looked fine, but the bowel on our baby boy looked bright, a marker for Down syndrome. I was offered and declined an amnio. I rightly assumed that our baby was being fearfully and wonderfully made in the secret place of my womb and went on to enjoy the pregnancy. 

At exactly 39 weeks, I gave birth to a 7lb, 10 oz perfect and healthy baby boy, who also has Down syndrome. We are very proud of our son's "designer genes"! We know that he was indeed fearfully and wonderfully made and created in the image of an Almighty God. At 3-years-old, he is very much more like typical kids than different. He enjoys playing cars and wrestling with his older brothers and he is as gentle as a 3yo boy can be with his baby sister. We like having him in our family so much, that we are moving forward to internationally adopt another little boy or girl with Down syndrome. 

I wish people in the Church would get educated. I wish that they would seek information to see beyond the common myths associated with Down syndrome. Our son is not an "angel". He is most certainly not "happy all the time". He is not "downs" or "mentally retarded". He's a little boy who happens to have an extra chromosome. Because of that, it takes him a little longer to learn things that come easily to other children. He will learn to read, ride a bike, and, hopefully, drive a car. Young adults with Down syndrome are attending college, working meaningful jobs, and even getting married. We have high hopes for our Simeon. But, even if his intellectual disability causes him to live with us as an adult, we know that we have been given a gift and we are forever grateful. 

I hope that we will see more positive stories of people and children with disabilities in your magazine in the future. I hope that you will join us in working to remove the fear associated with parenting a child with special needs. Not all the gifts that God gives look the same, but the joy and the rewards are completely worth the challenge.

Sincerely,

I'll let you know if she responds.

Adoption

My heart hurts for orphans. From the time I knew about adoption, I knew I wanted to adopt a child. Early in our marriage, Shawn and I discussed adopting a child with Down syndrome some day. When we had Eon, I thought God had just been preparing us for him. Now, we believe Eon is, in fact, preparing us for someone else. 


Upon the birth of our first born, I remember thinking, "They could've handed me any baby and I know I would love her just as much." And, later thinking, "That was a bizarre thought to have." :) But I knew then that I was capable of loving one born to another.


So, it's really no surprise that the children of Reece's Rainbow have captured my heart and turned me into an advocate with my first click to the website. I have spent much time praying, crying, and longing over the children listed there. I follow the blogs of parents working to bring their children home. I rejoice when I read the "Gotcha" posts and feel like I'm walking on air after viewing the pictures of the first meeting. I talk about the fate of those not chosen with anyone who will listen...and sometimes even if they won't. 


I wrote this post several months ago about our position on adoption. 


But, God, in His mercy, intervened and radically changed our circumstances. Suddenly, we qualify. We could actually do what just months ago seemed so much like a pipe dream. We could actually have a "Gotcha Day" of our own. 


How in the world do you choose a child? I scroll through the pictures and my heart is captivated by each and every one. God chose the children currently in our home. For the most part, we even left the timing and the number up to Him. So, being in the driver's seat is something new. 


Yet, we're not really in the driver's seat, are we? Honestly, if we were, I'd be researching our next vacation spot instead of researching the best agencies. But God has so strongly placed this on our hearts, there really isn't any question as to if we'll take the leap. 


The rational (maybe secular?) side of me, insists that we wait until the time is right, the money is there, the house is bigger, the baby's older, the littles are potty trained, the olders are enthusiastically supportive, etc.


My heart, however, tells me there is a child who goes to bed at night without a story, a kiss, or a prayer...a child who wakes at night without crying because he knows there is no one to comfort him...a child who has never felt like he mattered (because, in his country, he doesn't)...a child who's fate is sealed when he reaches the age of five and who will surely die unless I can get my head in the game.


When I listen to my heart, my excuses fly out the window. I know a sense of urgency to bring that child home, before any more harm is done. 


But who is he?

Tell All Tuesday!

This little guy needs a home and a family. Could it be yours? 

Soon, (if it hasn't happened, yet) he will be transferred to the mental institute. His head will be shaved and he will likely be tied to a crib. When he cries (and he will, at first, until he learns it won't do any good), he will be ignored or abused.  He will sit for hours in his own waste with no stimulation and nothing to do. 

Given a family, he could thrive! We've seen it happen time and time again. These kids do very well when given a chance.

Please share this. Post it on Facebook, tweet it, blog it, tell people irl, send emails, etc. Please, let's find Harlen a home!

Dear Harlen,

You are a little boy with an extra chromosome. Because of it, you have neither a mom or dad, siblings, grandparents, or a church family. You have no toys, clothes, or even shoes that are yours alone. You have blond hair and blue eyes. You are five-years-old.

That is the sum total of what I know about you.


I don't know what makes you smile or if you ever laugh so hard your belly shakes. I don't know what comforts you when you're sick. I don't know if you dance when music plays or if you wave your hands like your directing the choir. I don't know what your favorite food is or if you like the color red.


I do know that I have failed you. My heart aches over my failure and I've lived in a haze of guilt for several months because of it. I do know that my guilt in no way compares to the misery of what's in store for you as you transfer (or have already transferred) to the mental institute.


I agreed to be a 5-5-5 Warrior for you, to advocate for you, and raise money for your adoption, to tell the world about your fate and maybe even find you a family.


I am a coward.


I wish I could say that I got busy or forgot. Even those lame excuses would be better than the truth.


The truth, dear boy, is that I am a coward. I was afraid of so many things. I was afraid that people were sick of hearing me go on and on about orphans. I was afraid that people would think I was only friends with them because I wanted their help. I was afraid people wouldn't care.


But mostly I was afraid I would care too much. It hurts to love an orphan. It hurts to allow my heart to be broken over things I can't control. It's hard to have one part of my heart in an unknown land and still deal with the here and now. 


The reality that I can't protect you is hard for me to take. The harshness of your world is hard to reconcile with the ease of my own. 


Added to that is my own foolish pride which knows that I'm not creative enough, persistent enough, or eloquent enough to move others to give with their hearts, to feel your plight, and to tell their friends. I couldn't do it perfectly, so I settled for not at all.


I am so sorry. I am weeping as I write this. The middle-aged mom of many from the rich country of America, ashamed to confess her failings to the poor orphan of Eastern Europe. 


It is my hope that one day you will hear these words. I hope that you will sit on the lap of a woman who smells like lavender soap and calls herself "mom" and she will whisper these words to let you know that someone, in her own warped way, really cared about you when you were all alone.


I also hope that others who read these words will care and give and act to get you here. 


I am not afraid, anymore, sweet boy. I know that you are not really alone. The same Jesus who is here with me is there with you. He will not give either of us more than we can bear with His help. He will give me the strength to fight for you and you the strength to hold on until someone comes for you. He will hold me as I love you from afar, and hold you as you wait.


Be strong, little one.
Love,
Tara 
(If you would like to donate for Harlen, in spite of my failings, I would be so very grateful. Every little bit helps. Please go here to give.)

So what did you do this week?

I just spent several days in the hospital after my large kidney stone - remember the one from my recent pregnancy? - decided to rear its ugly head. I was sitting in my beginning crochet class on my birthday (gift from my awesome husband) when the familiar pain about took my breath away. I thought it would eventually recede back into the kidney like it did before and was determined to outlast it. I threw in the towel 12 hours later and headed to the ER. Kidney stones hurt! 

 After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.

In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.

The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?" 
And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it. 

When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.

But it made me think.

It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.
What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!

Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap.  They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.

Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.

So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.

And it's not good enough.

Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?

The Tsunami

When it comes to emotional topics, I like to write a blog post after I've reached a conclusion, when the emotion is past and I feel I've resolved something within my mind. 

But my emotions are running high right now and I feel there is no solution. There will be no tidy package with a neat little bow for this crisis.

My heart literally aches over the 92% termination rate for Down syndrome pregnancies. I am burdened for the women who have made the choice to have their young killed out of fear, ignorance, and, yes, selfishness. I am burdened for the lives of children eliminated and tossed away simply for being different than what was expected. 

And I am terrified for the many yet to be targeted. A test is coming that will guarantee the almost complete annihilation of a whole class of people. Right now, many women give birth to babies with Down syndrome unaware. They are surprised to discover soon after birth that their child is sporting an extra chromosome. While they are usually shell-shocked initially, love for their child saves the day and they come to learn that life with an extra 21st chromosome is a life worth living. Most eventually discover that they wouldn't change a thing, even if they could.

Soon, a surprise like that will be almost unheard of. A simple, non-invasive, accurate blood test will be available within the year to diagnose Down syndrome during pregnancy. Some women will still choose to continue the pregnancy. Most will not.

You may think I am being overly dramatic, but I have heard too many mothers of children with Ds, honestly confess that they are glad they didn't know. They don't know what they would've done had they had a prenatal diagnosis. I have read too many negative comments following news articles about the new test to pretend like it is good for women to have "all the information available to them." And I have read too many stories from women who were pressured to terminate in subtle and blatantly obvious ways from the healthcare professionals treating them, to believe that these women are being given accurate and current information and making informed decisions.

Honestly, I barely see people with Down syndrome in my community as it is now. 

I advocate all the time. I spend more time than I should on birth boards, the amniocentesis board, the prenatal testing, and poor prenatal diagnosis boards of Babycenter.com giving accurate information, showing pictures, and sharing snippets of normal life in an effort to dispel some myths and fear surrounding Down syndrome. I blog about our life and our boy. I post articles and facts on Facebook. I take Eon out into the community and "show him off".

I fear it does little good.

I feel like I am standing on the shore with a cup, trying to hold off a tsunami.

There is a tidal wave of ignorance, bigotry, misinformation, deception, convenience, ambivalence, and fear threatening to wipe out people like my son. My cup of truth seems paltry in comparison. 

I feel discouraged and helpless.

Cringing!

I don't want to offend anyone. It's funny how we say that followed by a giant "BUT" meaning that we most definitely will offend someone. Truly, that is not my intention with this post, but something really rankles me and I need to speak to it.

Twice in the last few weeks, I have visited blogs of adoptive parents. They have both adopted children with Down syndrome, which is fantastic! They are both amazing women and wonderful mommas. I have great respect for them. (here comes the "BUT"...are you ready for it?)

But, they both refer to their children with Ds as "downsies". Just writing it out raises my blood pressure. I tried seeing it from their perspective. I understand that they view it as a term of endearment. They obviously love these kids. They are smitten with the characteristics that make them unique. They use "downsie" as a pet name for their cherished children.

The problem with pet names, however, is that they often make the designee seem like, well, pets. It puts these kids in a separate, cutsie category from the rest of the family, even the rest of society. It makes them seem slightly subhuman. Even with the best of intentions, calling children with Down syndrome "downsie" sounds condescending and even demeaning.

You may think I'm over-reacting. Perhaps I am, but imagine if these same families (both white) had adopted children of another race. What if they, loving the characteristics that make their new kids unique, chose to call them "darkies"? Would that be acceptable? Does that make you cringe as much as "downsie" does me?

One problem I have with this terminology is that I have found that there are two camps in the general public when it comes to attitudes about Down syndrome. There is the "burden" camp: those that believe people with Ds contribute little to society, are a burden to their surviving siblings when the parents pass on, and that it's even irresponsible to carry a Ds pregnancy to term. That camp deserves a post of their own.

The other camp is the one that's pertinent to this discussion. It's the "sweet" camp, as in, "Ahhhh, they're so sweet". Of the two, I prefer this one, but neither are accurate. People with Ds experience the whole range of human emotions and attitudes. Eon is alternatingly sweet and crabby, easy-going and stubborn, happy and mad, just like the rest of us.

"Downsie" sounds very much like it came from the uneducated sweet camp. I know of self-advocates, young adults with Ds, who are struggling to be taken seriously. They have to overcome unbelievable obstacles to earn the respect typical people are afforded at birth. Parents who call their children "downsie" are perpetuating the stereotypes that are limiting these individuals. In so doing, they are limiting their own children and decreasing their potential. They are also limiting my child.

The other problem I have with this label is that it shows that these moms, as awesome as they are, have not spent a great deal of time immersing themselves in the Down syndrome community. I wish they would. They would quickly learn about "people first language" and correct terminology, but more importantly, they would have instant support and answers for questions about medical problems, IEPs, best toys, behavioral issues, nutrition, speech/language, therapies, potty training, etc. That would be the best for their kids. They wouldn't have to rely on the, often uninformed, medical community for answers. We in the Ds community would benefit from their ideas and input, as well.

One day, I hope to join these women in adopting a child with Ds. But please note: That child may have Down syndrome, but will also have the same respect, status in the family, and unlimited potential as his siblings. While we will love him dearly and, I'm sure, find him incredibly cute, he will not be a "downsie".

Doubt, reposted

This is a post I wrote back in March. I revisit it from time to time because I need to. I wonder if there will come a time when I won't. In the meantime, I thought I'd repost it for anyone who missed it the first time around.

doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)

Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?

Inadequate.......Not doing......Overwhelming.......Enough

DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27

You created......Wonderfully made.........Image of God

truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Lord will fulfill His purpose for me; Psalm 138:8

Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)

I can do everything through Him who gives me strength. Philippians 4:13

But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

Strength......Grace......Power

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)

God Cares

Julia and her husband adopted Aaron from Ukraine this past year. He had been transferred to a mental institute a year before they were able to rescue him. In country, they ran into difficulties and spent a good deal longer there than they were anticipating. They visited Aaron everyday and began to get a very bleak picture of the lives of the boys who lived with him in the institute. She calls them "The Lost Boys" and has been shouting from the roof tops about their plight. Today, she reveals some good news, that only God could bring, about "her" boys. Please read the entire story here. ***Warning: You will need tissues. God cares so deeply for these children. Shouldn't we do the same?

Buddy Walk

We had a great time on the Indianapolis Buddy Walk and were so blessed by our team of around 45 people! Wow. Here are some pics. I managed to waddle about 1/2 mile of the 2.6 mile walk, but it was fun to watch all the teams go by. It seemed to be a bigger turn-out than last year (which was estimated at 1500 people). As I was sitting and watching, though, I was struck by the number of people that were missing...because of all the women who choose to terminate the pregnancy after discovering their baby has Down syndrome. If only they had given their child a chance, they could've been walking with us, enjoying the day and bursting with pride over their child and the Ds community as a whole. Made me sad. Aside from my melancholy, it turned out to be a good day. Here are some pics of the overcast day.

So tired...and a little chilly.

We had a lot of kids walking with us (and this is not even all of them).

Dad (Shawn), Me, and Eon after the festivities were over and we were worn out.

The boy of the hour with oldest sister Michaela and blond brother Zak behind him.
Not real sure about Grandpa (who just got back into town after 5 months.
See the sea of orange "Simeon's Sidekicks" t-shirts? The walk is along the canal in downtown Indy.
Being held by Aunt Tonya...still not looking thrilled.
Assembling the team. The cute bald man in the middle is Shawn. :) Looking forward to next year!

Rolling Around In My Head: The People Who 'ARE'

Rolling Around In My Head: The People Who 'ARE': "It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically c..."

I found this post to be a must-read...humbling and brilliant. Please, please...take the time.

The well-meaning comment

At only 15 mos., Eon has yet to face ridicule or discrimination because of Down syndrome. I don't doubt those moments will come, but I try not to dwell on them. I do know other moms have had to put up with negativity and insensitive comments related to their little one's diagnosis, but we have escaped relatively unscathed.

Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.

What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.

Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?

Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra chromosome...an extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)

Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)

Why are we afraid of Down syndrome?

I posted this on the amnio board on Babycenter.com today.

Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, etc...it just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Outcomes

I recently read a comment by a woman who is pregnant with a baby with Ds. She has chosen to continue her pregnancy. She wrote, "It's terrible to have to go through this because either outcome (termination or a baby with Down syndrome) is not what you want."

I've been thinking about that for a few days. She doesn't know it, yet, but I think she will one day change her story on that. Simeon, extra chromosome and all, is a very positive outcome, indeed!

Should we be vetting the professionals who work with our kids?

I first heard the word "vetted" during last year's presidential election. It was used describing the background checking (or lack thereof) of Sarah Palin, once her teen daughter's pregnancy hit the news.


Recently, I came across an online discussion between women who have terminated for Down syndrome. They were discussing the thought processes behind their decision and lamenting the fact that they were unable to share their decision with people for fear of judgement. It was a fascinating discussion for me, until I came upon the post from a woman who works in special education. She shared that a colleague of hers really helped her make her decision to terminate by reminding her that, not only was she doing what was best for her family, but she was also doing what was best for society. Yikes!

It's disturbing that someone who works with people like my son would choose termination for her own pregnancy, but that doesn't necessarily disqualify her to me. I realized a long time ago that a 90% termination rate means that I likely interact with women all the time who've aborted their baby with Ds and I'll never know. But, to have the mindset that those with Down syndrome shouldn't even be members of society and then to work in special education absolutely blows my mind. Unfortunately, it got worse. She went on to say, "People don't condemn others for putting a sick dog to sleep. It's considered humane."

I cannot possibly believe that this woman and her colleague will have the best interest of my child at heart when they don't even feel he should live! I can't imagine that they will really work to help him meet his goals and his full potential.

How many people like these women work with children or people with special needs? Today, I read about a child with Ds who had been repeatedly "put in time out" in a bathroom, with the lights off by her special education teacher. The TA finally reported it and the family discovered the atrocity as authorities were trying to sweep it under the rug. I have always said that some people should be hanging wallpaper for a living and I think that applies here.

Throw in the former special ed teacher I met in Panera a few months ago who asked me, "Wouldn't it be great if we all had Down syndrome...and were able to beat the crap out of someone and get away with it?" and I'm starting to get a bleak picture of Eon's school career.

I have decided that I'll be doing a little vetting of those I let work with Eon. I will be asking direct questions to determine underlying belief systems. I want to know that those I allow to help us are truly for him.

Apparently, I'm a Pollyanna

Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Anyone else sick of Down syndrome?

October is Down syndrome awareness month, and while I get the need to advocate, I'm kind of over it. I decided not to do the 31 for 21 challenge because there is no way I can blog that much, but I have been doing daily Ds facts on facebook. I think all my friends have hidden me for the month and I don't blame them. I live with Down syndrome and even I don't feel the need to know every little Ds fact known to mankind!

The thing is, Down syndrome is just a tiny part of life. I like it that way. It's part of what makes Eon, Eon, but it's not who he is. It doesn't define us as a family either. We're the Lakes. Sometimes we're the family with "all those kids", but Ds only plays a minor part in the drama that is our life.

I kind of feel like bringing this focus on Down syndrome is good, but I wonder if we're not also alienating those around us who can't relate.

In other news, Eon uses his first sign "all done" daily when he's had his fill of whatever babyfood dujour he's done with. We made such a fuss the first time he did it spontaneously, that I sometimes wonder if he rushes through his food so he can do it again! It's great to have so many cheerleaders in the family.

He dropped the ball today. Literally. His OT was here and he dropped his ball. He thought it was so much fun that he did it over and over again. She was so excited that he was doing it on purpose. Cracked me up! When the other kids acquired this little skill, I was annoyed. With him, I'm elated! I love to celebrate and he's teaching us to do it for all of our little abilities.

Advocacy and Exhaustion

I generally wear my heart on my sleeve. I'm very real about my life, thoughts, and emotions. I'm terrible about erecting walls. If you are not, you might be tempted to think that this is a good thing. Let me quickly assure you that it is not. With increased vulnerability, comes an increased risk for woundedness. One of my greatest fears is to be misunderstood.

It happened yesterday, in a group, of course. I felt attacked and retreated, but lost the opportunity to clarify, to be understood.

I returned home to lick my wounds and wonder why it had hurt so much. Why did I care so much what those people thought of me?

The conflict had nothing to do with Eon or Down syndrome, and yet my response had everything to do with them. I overreacted because I've been living in a state of high alert. I am constantly on the look-out for ways to advocate and educate.

Being the mother of a child with Down syndrome is much harder than I imagined, but not in the ways I thought it would be. Parenting Eon is a breeze! He is the easiest, most content, delightful baby I have ever had. Unlike my typical babies, I never tire of caring for him or meeting his needs. He is a complete joy!

But we live in a hateful, selfish world. I read wonderful articles advocating for people with Ds, and then scroll down to read vile, nasty comments. There are many who strongly advocate that aborting a baby with Ds is, not only acceptable, but rather the only responsible choice. There are many who are simply ignorant of today's Ds, and doggedly hold to the "what happens when you're gone and the siblings will have to care for them?" mentality. There are many more who are concerned with the monetary cost to society as a whole, a sentiment sure to spread like wildfire when the government gets through with healthcare.

The first group always shocks me, the second irritates me, and the third scares me.

And so, I continue to educate and advocate. But I get tired of the process. And he is only seven months old. I will be doing this forever. But not today. Today, I'm going to lick my wounds and hold my boy.