Words

"Sticks and stones may break my bones, but words will never hurt me."


Except...that's not really true, is it?


Death and life are in the power of the tongue. Proverbs 18:21


Words are powerful. They can bring hurt or healing. They can encourage or destroy. They can change the course of a life through inspiration or demoralization. 


At times, words are so powerful that they are physically experienced and not just merely heard.


I experienced a word recently. I was in my safe place, church, at a Cub Scout meeting. I was waiting to speak with a friend. An acquaintance of mine was sharing a story with her about her son's visit to the pediatrician. Apparently, there had been some early worries about his development. The latest visit confirmed that all is fine. She concluded her story with, "Don't tell me my kid is going to be a retard!"


I was stunned. The air was sucked from my lungs in a startled gasp as I recoiled from the word. I couldn't breathe. I couldn't hear what else was said because of the over-powering "wooshing" sound in my ears and the thumping of my own heart. I wanted to escape, to be anywhere but there, but my feet were planted to the spot. For several seconds that felt like hours, I stood stock still and breathless, trying to regain my senses. When my faculties returned, I pivoted sharply and walked away to find, hold, and inhale my boy.



I never said a word to the acquaintance.


I've spent some of each day since, trying to sort out my feelings and make some sense of the incident.


When I posted about it in my group for mothers of kids with Down syndrome, they were ready to lynch the woman.


When I shared the experience with my friends without a personal connection (other than Eon) to intellectual disability, they were quick to defend her.


Neither response felt right to me. 


She's a funny gal, the kind that will build a story to the inevitable punch line. She enjoys the lime light and being the life of the party. In short, she's a lot like me. While I never would've used the term "retard" as a noun, even before Eon, I have, at various times, stuck my foot in my mouth and crossed a line for a laugh. 


At the same time, I don't think writing off her actions as "uneducated" is the way to go, either. Uneducated implies that she really had no idea the word is offensive, and yet, something tells me that if a young adult with Down syndrome had been standing there, she would've spoken differently.


I've been told that she certainly didn't intend to cause pain. Apparently, I'm not supposed to be offended if the intent was benign. But the crux of it is that it really doesn't matter if I was offended, at all. This journey that we're on is not about me. This is Simeon's trail. I am a participant and a spectator, but I am not the star. What really matters is the answer to this question: How is my son going to feel when he encounters that word at around the age of twelve or so? Will her intent matter then?


I don't want to have to educate Christians in hopes that they will no longer use hateful words.


I simply want us to no longer be hateful.


But it starts with me.


As I was ruminating on my hurt, I remembered a potent example of an instance where I marginalized people for a laugh. The story is here. Funny, right? Except, I shared that story, complete with punch line, in a group that included a 17-year-old girl whose siblings are all half, who lives in a mobile home, and who has most probably been called that very thing. 


Funny thing about words. Once they're spoken, you can't ever take them back, no matter how horrified you are that you chose to speak them in that precise moment.


If anyone thinks he is religious and does not bridle his tongue, but deceives his heart, this person's religion is worthless. James 1:26 


I am too often guilty of worthless religion.


He who has knowledge spares his words, and a man of understanding is of a calm spirit. Even a fool is counted wise when he holds his peace; when he shuts his lips, he is considered perceptive. Proverbs 17:27-28 


Too often, I open my mouth and prove myself the fool.


...for out of the abundance of the heart, his mouth speaks. Luke 6:45b


I need a heart change.


Reckless words pierce like a sword, but the tongue of the wise brings healing. Proverbs 12:18


Gracious words are like a honeycomb, sweetness to the soul and health to the body. Proverbs 16:24


This. I want this...when people experience my words, I want to them to feel sweetness and find healing. I want them to bask in love and acceptance. I want my religion to mean something. I want to speak life.


Will you join me? Will you determine to stop using reckless words that pierce like a sword? Will you put aside your own need to be right, your need to be funny, your need to make it all about you and let this be your prayer, too, as I'm making it mine?


Let the words of my mouth and the meditation of my heart be acceptable in your sight, O LORD, my rock and my redeemer. Psalms 19:14

Happy Birthday, Eon!

Three years ago (and 1 week...this post is a bit late), our world was forever changed with the birth of our third son, Simeon Israel. We knew we had a 5% chance of hearing he had Down syndrome and yet, I honestly never gave it a thought during labor and delivery. 


The words, "He has characteristics of Down syndrome," before I even had a chance to hold him, rocked me to my core. While we recovered quickly, I will never forget the raw fear that overwhelmed me in that moment.


Now, three years later, I often wonder what all the fuss was about. :)

Eon is, as promised, "more alike than different". Like any 3-year-old, he loves Blue's Clues, playing cars, going to the park, and babies. His favorite foods are pizza and french fries. He can mess up a room in 20 seconds flat and he has no fear of heights. He loathes time-outs, but would rather sit there longer than sign "sorry" to the person that he's wronged. He fights and fusses every time I wash his hair, but willingly stuck his face in the kiddie pool fountains when we were on vacation last week.

He has a personality that is all his own and makes us laugh on a daily basis.


His newest thing is to shush us every time he doesn't like what we have to say. "Eon, pick up your toys." "Shhhh!" "No, Eon. No cookies before dinner." "Shhhh!"


If we continue in our madness, he'll stick out his arm in a "talk to the hand" move he's perfected. Cracks me up every time. I find myself wishing I could do that to people when they annoy me, too. :)


That being said, he is different. Not in a negative way, just in an Eon way. Hard to say what is Down syndrome and what is just him.


He is a good eater for the most part, but he's very suspicious of food if it looks different than what he's used to and will often not even try it. For example, he will not eat a square cracker. You can tell him it's a cracker and he will sign it, but if you hand it to him, he will turn his head away and refuse to let it near his mouth. If a cookie is not round with chocolate chips or cream in the middle, good luck getting him to try it! I have no idea.


He loves music from media, but he hates it if we sing or dance near him. I love to sing and do it all the time, but he will yell at me if I sing around him. Here's a nice pic of him while we were singing "Happy Birthday." I promise we were not that bad. :)

The quirky things about this kid only serve to deepen our appreciation for him. He has changed our lives by expanding our world. We are indebted to him. But don't tell him that. He'll want a later bed time. Shhhh!

The IEP

We had Eon's first IEP last week. Whew. I was a wreck before hand, having read/heard all kinds of horror stories. I really didn't know what we wanted for him, so that was worrisome, as well.

I am a huge proponent of inclusion for school, but the first year of preschool seems more like an extension of early intervention to me, versus actual school. 

Eon scored so well (average) on social skills. He had no problems attending to and participating in group activities. I know he would do very well in a typical preschool setting. What I didn't know was whether or not he would be pushed to excel in that setting. My fear was that they would think he was cute and tend to baby him. 

My sister is an OT in the school system. She has seen that first hand. She's watched as a child with Down syndrome was allowed to skate and not required to hang up his backpack or stay in line with the other kids. She's not sure if they just excused him because he's cute or if they just had lower expectations for him.

Eon needs to be pushed. He will do the minimum he can get away with. :) We know Miss Elaine, the developmental preschool teacher won't let that fly. So, when they recommended developmental preschool initially, with the option to move to community preschool when we feel he's ready, we jumped at it. We feel it's a good plan and fits his needs.

I freely admit to tearing up when they started discussing the bus, though. I'm just not sure I'm ready to put my three-year-old on a school bus and watch it drive away. They recommended starting with sending him home on it. That way, he can just get on it with his friends. I got the feeling they've dealt with sappy moms before. We'll see. I can totally see me stalking the bus the first time he rides it.

Some other good things about the meeting were that they seemed to really like him, which every parent enjoys hearing, and, the psychologist seemed to have a good grasp on how limited IQ testing is, especially for kids with decreased communication like Eon. I was prepared to tell him all of that, so it was nice to have him beat me to it. 

Overall, it went well. The only surprise was that he starts a full week earlier than I'd anticipated. A week from tomorrow. Just ONE week.  When he's still only TWO. Sigh. I don't think I'm ready for this.

Open letter to the Medical Director, Kidney Transplant Team, CHOP

I read this post and I had a visceral response. I amended a post I wrote a few months ago and responded to what I see as a complete injustice.


Open letter to the Medical Director, Kidney Transplant Team, CHOP:




Dr. Baluarte,

I am certain that you are excellent at what you do. You did not obtain your position without stellar skills. I am wondering, though, if you remember why you became a doctor in the first place. Was it because you wanted to help people? I'm sure that was a lot of it. I'm also sure that you have helped many, many people. And yet, there are some people you deem unworthy of a life saving procedure based on what you and your team perceive to be "low quality of life."

At one time you pledged to have unconditional positive regard for your patients, to not discriminate based on who a person is. 

And now you are. 

No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in. We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 


But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't it have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because my son with an intellectual disability will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto children to the point that, if they can't meet them, we decide that they must die?!?  You look at a list of diagnoses and make a judgment on the quality of that life. 

The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets


No list of diagnoses and potential problems could EVER accurately describe the life of a person!  I hope that you will reconsider your stance on this. I hope that you will view people with intellectual disabilities as just that...people. Amelia Rivera deserves a transplant. You need to give her one.

Sincerely,

Mrs. Tara Lakes

www.simeonstrail.blogspot.com

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?

A Gift

(For those looking for an update: Eon's EEG is scheduled for Wednesday morning. We have not witnessed anymore seizure activity. We'll keep you posted.)

Today, I am incredibly grateful to be Simeon's mom. I'm lying on my bed typing on my laptop and Eon is in the tv room right outside mine. He's playing ball with his big brother, Ben. His pants are falling off and his diaper is sagging, giving him a plumber's crack. 

Any second, he's going to catch sight of me and run in here signing, "diaper" so I'll change it. While in here, he'll invariable sneak a drink of my coke (and cough...he's still not supposed to have thin liquids) and throw a book at me so I'll read to him.

This morning, he raced into church ahead of me and took off toward the stairs to go to his class. He was indignant when I steered him to the bathroom to wash breakfast off his face, instead. He kept signing, "play, play!" Big sister dropped him off at his class. She later told me that he walked up to the gate and said, "Hiiiiiiii!" and signed, "Play!" to a little boy who was waiting there, then lifted his arms to be carried over the gate and into the classroom. Once inside, he gave a backward wave to big sis and joined in the fun.

I was thinking earlier how empty my life would've been had I chosen differently and terminated my pregnancy for Down syndrome. 


Every year, on my due date, there would be tears, sadness, and even guilt. Now, there's cake, candles, presents, and laughter.


If someone with Down syndrome crossed my path, I would inwardly cringe, even as I watched, wondering if they'd confirm my choice by behavior or need. Now, there's an instant delight and immediate connection as we compare notes on our similar trails.

I might feel some measure of relief, along with my pangs of grief, from time to time that my life is not as difficult as I was sure that it would be, but I also would never know what I do now...that courage grows from meeting challenges, that depth comes from embracing hard things, and that love really does conquer all.


He's a miracle, this child of mine. In spite of all odds, he's not only here, he's thriving. He's teaching me what living really means. He's leading me in my quest to discover one thousand gifts, of which he's certainly one.


Without him, my life would have less color. I imagine the winters a little colder and the edges a little harder. The highs of life would be less high and the lows would last longer. There would be less laughter, less passion, less grace...less life.


And I would never know.


What a gift he is to me, this exuberant bundle of designer genes! I am so humbled that God gave me the eyes to see beyond the fear. How I pray that others will see, as well.