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.

No idea what to title this...

(I usually reserve posts about overtly spiritual things for my other blog, Remnant of Grace.  However, as this post also discusses Down syndrome, I've decided to post it here, as well.)

I’m beginning to think that legalism is the root of all kinds of evil. We often think we are impervious to it, but clearly we are not. It infiltrates our subconscious and colors the lens through which we view others and ourselves. It causes us to act in ways which are inconsistent with our beliefs and contradictory to our hearts. It places a price tag on that which is free and keeps us from ever walking in victory.

More lethally, it keeps others from having a relationship with Jesus. Other people latch onto our particular brand of legalism, and follow along, looking the part. But, in a moment where true relationship would keep them from disaster, the rules of legalism just force them underground.

Meet Julie, a married mom of a 3 1/2 year-old daughter. She comes from "a religious family" (her words). After struggles with both primary and secondary infertility, she finds herself pregnant with a much wanted little boy. Unfortunately, Julie discovered from amniocentesis that her son is sporting an extra chromosome. Down syndrome was not part of the plan and she is terrified. She also admits that she is very, very angry at God for playing "this cruel joke" on her.

Julie wants an abortion. But, she is struggling with that decision because of her "religious family." The only person that she has shared her son’s diagnosis with is her sister, who is championing that Julie and her husband will do a great job raising a child with Ds. Julie has not shared with her the desire/plan to terminate, because she is worried that her sister will "think less of her."

I can’t help but wonder. If Julie’s family were less religion and more relationship, would that make a difference in this situation? If she were not worried about judgment from them for breaking the rules, would she be able to share her heart and be heard? Would the love and support of her family change the outcome for both Julie and her baby? Would she have already come to a saving knowledge of Jesus Christ? 

If she had relationship with Jesus, instead of a desire to keep up appearances, she would already be convinced that, because God loves her and her son, He must have a plan for her precious baby’s life that includes his extra genetic material. She would know that he is being knit together in secret for a purpose, and that he is being created in the image of her God. Termination might have been her gut reaction to the mind-numbing fear, but it would have garnered no serious consideration.

What about the rest of us? Are we living according to some moral code that applies to other people’s situations? Do we know that abortion is wrong because it just is…and because we would never find ourselves in a situation where we would be tempted? Or do we know it’s wrong because of a gut-wrenching knowledge of the Father’s heart? Can we be real with the Julies of this world and say, "I know your fear. I’ve had it, too. I, too, just wanted to make it go away," and then encourage them that God knows, and that only He can bring them peace? 

Or do we shake our heads and click our tongues and declare, "I could never do that to my baby," knowing that it is unlikely that we would ever find ourselves in that situation.

It is easy for me to sit on this side of it and judge. Today, I find myself judging the unknown "you" that are steeped in legalism, reacting only to the intent and not responding to the heart. Tomorrow, in my frustration, I will judge the sinner, too. I will be so frustrated and feel so helpless that I could not make her see the truth, when the truth is not mine to reveal. I will feel holier than thou because I’m living this life, and she chose to throw it away.

How is that different? Unfortunately, it’s not. If I had a living, breathing Julie in my life, I would hold her hand and let her cry. I would listen as she processed. I would validate her feelings and pray with her. I would lovingly share truth with her and pour everything I had into her. And then if, in her fear she chose wrongly, I would walk away in disgust and horror.

When will my eyes be Yours, Lord? When will I hear with Your ears? How long must I live this selfish life? Why does it always come back to my foolish pride? I pray for grace, dear Lord. Grace to love my brand of unlovables. I pray for grace to own the mercy you have so freely given me, so that I can freely give it. Change my heart of stone.

(I wrote this post in October of 2009. I don't know what Julie chose to do, but since she broke contact with me, I think I can safely guess that she chose to abort her precious son. Given the new, non-invasive blood test for Down syndrome diagnosis in pregnancy that will be here in the US within the year, the likelihood of many more stories like Julie's is great. Do we have what it takes to love them all?)

Things I wish my children knew

Here are 5 things I wish my children knew:

1. Everything is not an emergency. There are true emergencies in life. They usually involve blood or fire. So, unless there is blood (must be dripping or spurting) or fire, do not interrupt my phone call, bathroom break, or nap. Really, don't. Because then we might have an emergency.
2. There are injustices in the world. Children sent to mental institutions just because they have an extra chromosome is one of them. Getting a smaller piece of cake than your siblings is not.
3. Honesty really is the best policy. Why? Because you stink at lying. I will catch you and, even if I can't prove you are lying, we both know you are. My trust in you plummets to zero and neither of us wants that. I allow very few good things to happen to you when I don't trust you. So, just tell the truth.
   
4. I love you. I believe in you. I am behind you. I am your biggest fan, your greatest champion, and your strongest supporter. I am incredibly blessed to be your mom!
5. God is real and He is good. Never stop talking to Him, even if you're mad at Him. He's big. He can take it. It is hard for me to believe this, but He loves you even more than I do. He will never leave you. Ever. He will never fail you. I have failed you before and I probably will again, but He won't.

That's my list, so far. What's your list?

Taking Bites!

Based on my research, I anticipated all kinds of feeding woes with Eon, but we have been really blessed. That boy loves to eat! He has done really well and has been on all table foods since about 14 months.

That's not to say we haven't been cutting his food into tiny little bites every meal, though. He understands the concept of taking bites from larger food items. He will take bites if we are holding it and cue him, but was unable to handle having total control of a larger item. If given a quarter of a sandwich, for example, he would shove the entire thing into his mouth.

However, the other night, I cut half of his hamburger into pieces for him but accidentally left the intact half on his plate. Meals are, um, lively around here and I just wasn't paying attention to him. When I finally glanced over, he was holding the half of sandwich and taking bites!!! I watched him finish the whole thing, taking very appropriate bites with good chewing and swallowing. I am so excited!

Now, if I could just get him to scoop his own food with his spoon. This is how it goes right now. I scoop a bit of food on his spoon and leave it on his plate. He picks it up and puts it in his mouth. Then he hands me his spoon. I tell him to scoop it but he insists. I place my hand over his and guide him to scoop some food. He puts it in his mouth. Then he hands me his spoon, again. We do this a few times until I get distracted and he finally drops the spoon and goes at it with his hands.

Sigh. Baby steps. :-)

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".

Wordless Wednesday

Sleep study

Reverse Comparison

I often read posts on my online support group from moms comparing their little ones with Down syndrome to typically developing kids. Today, I want to reverse that and compare my typically developing baby with Eon at the same age.

Keturah (KJ) is 7 weeks old. She is just starting to have a longer (up to 6 hr) stretch of sleep at night. Eon was sleeping 12 hours straight at this age.

To fall asleep, KJ needs to be nursed, rocked, jiggled, and shushed. Eon needed to be laid in his crib.

On car rides, someone needs to sit next to KJ and constantly stuff her pacifier back into her mouth. Eon slept or watched his toys quietly.

When I'm cooking dinner, someone has to have KJ duty and walk her around the living room to keep her from wailing. Eon sat contentedly in his bouncer seat for 45 minutes in the kitchen with me.

When being held, KJ's whole body seems to be tense, like she wants to be moving. Eon just melted against my chest.

Don't get me wrong, I LOVE this baby with all that is in me. She is a blessing. But she is very high maintenance. I worried about how I'd cope with a "typical" child after enjoying the blessing of a baby with Down syndrome. The answer is: not very well. I try not to compare her to her brother, but I'm not very successful. And they say Eon is the one with special needs. LOL!

Oddities

In researching Down syndrome after Eon's birth, I discovered the general consensus was that he would be "more alike than different" (from typical kids) and that he would just learn to do things a little slower.

While those things are certainly true, I'm discovering there is a little more to it than that simplistic explanation. I expected that he would take forever to learn to crawl, walk, feed himself with utensils, etc. Those are things my typical kids struggled a bit to master. I was right. We're still working on utensils.

There are also things that I did not anticipate that he struggles with. He has been working in PT on sitting in a low chair or stool. He loves to sit on things his size, he just can't seem to figure out how to do it. He approaches the stool, and rather than just turn and sit, he tries to climb onto it from the front. That doesn't work. After several attempts, he generally ends up straddling it. I never noticed my typical kids learning this skill. They just knew it.

The wonder PT, Jill, is teaching him to walk backwards to sit down. Which is a great idea...except Eon generally sits about a foot in front of the actual chair. After he sits short of the chair, he turns, surprised to see the chair behind him. (Terrible mom alert: I laugh every time. It is just too cute and I can't help myself!) You'd think this would be terribly frustrating, but he just gets up and tries again.

Another thing that he cannot seem to master is getting off the bed. We have a king-size bed and he has found ingenious ways of getting onto it. His favorite is to push the desk chair over, climb onto that and then onto the bed, but he's also been known to stack books into a pile to climb on, too. Getting off is a whole 'nother thing. By the time he's ready to get off the bed, someone has invariably moved the chair. For almost an entire year, we've been telling him, showing him, helping him to "turn and shimmy" off the bed to the floor. Sometimes, he actually does it, but usually, he just sits and whines until someone rescues him. Not sure what's up with that.

I also kind of expected that once he "got" something, he would have it mastered. That was true of crawling and walking (although his balance isn't that great, yet), but not at all true of speaking and signing. He gets a word and will use it frequently and correctly for several weeks only to "lose" it and never speak it again, or at least for a long while. We have seen "doggy", "ball", "Micky", and "book" just disappear. It is baffling and beyond frustrating to me. The signs that have disappeared seem to reappear much more quickly, although I haven't seen "again" for several weeks.

Those little quirks aside, he is doing great! He understands almost everything and follows commands really well. He's starting to string 2-3 signs together to make "sentences". He is really in tune to other people's feelings and feels really bad when someone is upset. He tries to make them feel better. When his baby sister cries, he will go and get her blanket or get her pacifier (and put it on her forehead - cracks me up!) The other day, he accidentally hurt his older sister and he just looked devastated. He signed, "hurt", "Ellie", and "sad", then folded himself in half and cried.

Maybe it's the therapist in me, but I find the way his brain processes fascinating. I can tell we are in for a wild ride! :)

Pics of cuteness

Last day as the baby of the family.


Whoa! What's this thing?!?


Ahhhh. Good old therapy.



Baby sister decked out in Christmas duds.



Cheesy grin now given whenever he sees the camera.



Reflections. 2010 was a pretty good year.

Happy New Year, everyone!!!