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?

Pure Love Giveaway

A few nights ago, Eon fussed in the middle of the night and would not settle down. After trying a cup and a diaper change, I finally just hauled him into bed with us. I rubbed his back and let him lay on me for awhile. He ended up lying between us sideways (why do kids always end up that way?) with his feet basically in my face. 
I couldn't sleep. I just laid there thinking how blessed he is to be born in this country, into our family. I couldn't help but think about all the other toddlers who will never be comforted in the middle of the night and who will never know the soft touch of a mother's hand.
I've read before that institutionalized babies don't cry. They learn quickly that it does them no good. There is no one to soothe them or meet their needs. A researcher from Harvard Medical School studying Romanian orphans recently divulged that the institutions were "eerily quiet".
Some of the adoptive moms have mentioned that they had to teach their children how to be comforted. It was a foreign concept to them.
We have to stop thinking that this is someone else's problem, that someone else will meet the need. Because someone isn't. An estimated 147 million orphans do not have anyone to smooth the hair off their foreheads, or rub their backs, or kiss their noses....acts we, as mothers, perform countless times a day.
My friend, Patti, though she is unable to adopt at this time, is working to change that for a few kids. Please visit her blog to join her "Pure Love Giveaway". She has lots of great prizes so you can help an orphan and maybe win something. I should know...I read about it on my iPod Touch that I won in her first giveaway! :)

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".