What's it like? (Part 2)

You can find the beginning of this post here.
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 (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) 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 have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon 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 our children to the point that, if they can't meet them, we decide that they must die?!?


We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list. 
It breaks my heart.


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 don't know what the answer is. I do know that education and advocacy help. So does prayer.  I'll continue to do both. I hope you will, too.

What's it like? (Part 1)

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.

Exactly.

I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated. 

These poor women will never know what they are made of. They will always see themselves as weak or as victims.  They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.

Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.

Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

(To be continued...) 

Update on KJ & Eon

I spoke of our concerns about Keturah in my last post. I'm happy to report that her echo came back normal and she appears to be gaining some weight from the supplementation. Yay! Our follow-up visit is on the 22nd, so we'll see where we go from there.

Eon is doing great! He is 2 years and 4 months, now. He is so typical in some ways...asserting his independence, throwing the occasional tantrum, running away when called, hiding when eating stolen candy, wrestling his brothers, pretending to "die" when shot with a toy gun, etc. 

In some ways, Down syndrome seems more apparent than ever before. We are working hard on "inside voice" as he vocalizes loudly in public sometimes and I cringe. He's responding well to that, and will quiet down when I remind him (unless he's tired or hungry).

He is starting to really imitate more and more signs and we are even seeing him request things not given as a choice. For example, I asked him if he wanted to watch Barney or Blue's Clues. He thought for a minute and signed, "Signing Time". I didn't even know he could do that one! The other day, he heard the door slam and thought it was Shawn. He signed/said, "dada?" I told him that Daddy wasn't home and he signed, "Where?"

He seems to have trouble with the motor planning involved in signs and some issues with proprioception (knowing where his body is in space). Sometimes he'll attempt a sign and do it on the wrong part of his body, or make it look just like another sign when he clearly means the new one. Also, lol, he can't pick his nose. :) He will put his finger up there, then has to move it around to even find his nose, let alone the nostril, and by that time, I've put a stop to his intentions. Cracks me up!

We are adding OT back into the mix in hopes of helping him with these issues. (well, not the nose picking. LOL!)

Gross motor-wise, the kid has got it going on. He has some mad sliding skills. I was so impressed at our first outing to the park and he was able to climb right up to the slide, turn himself around and shimmy down, and then exit the slide to do it again...completely by himself! He's also learning to run and jump in PT. Even without full-on running, that kid is fast!

His receptive language skills are really good. He seems to know what we are saying, even when we wish he didn't. The kids like to quiz him. For example, they'll say random words and then throw in a food item. He'll say, "Mmmmm" every time he hears a food choice, even if it's something we rarely have! He also has very keen ears for the words "nap" and "quiet time" and will immediately start fussing if we utter them. :) 

Here's a pic from a Babycenter.com meet-up. Eon had a wonderful time hanging with the princesses! :)

Fear, worry, fretting

So the last few years have been something. We had Eon and the diagnosis of Down syndrome and all the appointments/specialists associated with that. Then he had a vascular ring repair. We've also had one child diagnosed with anxiety disorder after baffling behavioral issues and another started medication for long-diagnosed ADHD. I had a kidney stone in pregnancy, and after, with resulting hospitalization and lithotripsy.


It should not have come as a surprise, then, to discover that there may be a problem with our littlest peanut, Keturah (KJ). She has been a slow grower from the beginning. She weighed 7lb, 11oz at birth, but was slow to put on the ounces and was just over 10lbs at 4 months. I was concerned; the doctor was not. She was plotting on the chart in a regular way and there was no cause for alarm.

Until Thursday, at her well-baby 6-month check, when she had gained only 2 ounces. Suddenly, her weight was no longer even on the chart and we were discussing failure to thrive work-ups. We decided to supplement for a month and reassess. Until he heard her heart and detected a murmur. "Have I heard a murmur on her before?" he asked. Nope. And he scheduled her for an echo-cardiogram.

I took it all in stride. In my Down syndrome world, echos, heart issues, and supplementation are all the norm. I am comfortable discussing these things. Only, this is not my hearty kid with Down syndrome. This is my tiny, delicate princess with the typical number of chromosomes. And I am terrified.


In retrospect, I can see so many signs for concern. She has always been "my putziest nurser" I've often said. She takes forever to finish feeding and usually falls asleep long before she's done. She sweats more than the others did. I can see her freakin' ribs when I change her diaper. (DUH!)

So now we wait, with Dr. Google close at hand and all the terrifying possibilities. 


I find myself worrying and fretting.


Have I learned nothing over the past two years?!? God's got this. This does not take Him by surprise. Worrying doesn't do any good and cannot change the outcome of any situation. In fact, my life verse is Psalm 37:8b, "Do not fret - it only causes harm." (Other people get really cool life verses. God is very practical with me. :) 

God loves my little princess even more than I do. He has a plan for her life, as He does mine. His grace is sufficient for me.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  Phillipians 4:6

Happy Mother's Day!

Enough Kids?

People that we are close to expressed their displeasure recently at our desire to adopt. "Don't you think you have enough kids?!" 


This would be my response if I thought they would hear me:


It's not about a desire to have more kids. We have seven. By most people's standards, that's a lot. Often, we even think it's a lot, but usually, it just seems normal. We are imperfect people and an imperfect family. There are times when I think we've got it goin' on...and times when I feel like we're the Beverly Hillbillies. But when I look closely, I can see God's design. 


There are an estimated 147 million orphans in the world, today. That number is too big to wrap my brain around, so I look at individual children that I'm aware of that have nobody. I look at the pictures on Reece's Rainbow and imagine what those kids are like. Who delights in them? Who encourages and challenges them? Who loves them?


No one.

I imagine them living the life they've always known, in the same groupa with the same caregivers, playing with the same toys (if there are any), looking at the same walls...when, suddenly, at the age of five, they are jerked from that environment...ripped away from all they've ever known...and taken to a dark and scary place. There, they are tied to a bed or crib and left alone. I imagine their tears (which are ignored) and the noises which leave them terrified. Screams, moans, cries, and profanity assault their innocent ears. Most of them die within the first year.


And I think of my children. 


If you asked them, they would tell you they have a rough life. They don't have the electronic gadgets many of their friends do. They are forced to share a room with siblings. Most of their clothing is second-hand. I lose my patience and yell, sometimes. (Okay, maybe a lot). They are required to do chores and take care of each other. Their younger siblings break their stuff. 


They are blessed.

Quite simply, we believe we have something to offer the orphan. A small home, an imperfect family, siblings to play and fight with, parents to delight in them (and yell at them, from time to time), and the love of their Heavenly Father.


We are under no illusion that it will be easy. We don't expect our future children to show us any gratitude for being rescued any more than our current children do for not having to be. Children are generally selfish, messy, loud, and exhausting. Kids who were raised in orphanages come with emotional baggage, usually expressed behaviorally. Parenting is seldom easy, no matter where you get your kids.

Do we have unrealistic expectations about what it will be like? I'm certain that we do. We sure did when we were expecting our first, when we added a second, and when we set out to have a large family. No one can adequately prepare you for the future. 

I believe that's where grace comes in to play. God promises to be our strength in weakness. He tells us that He has given us all we need for life and godliness. He assures us that His grace is sufficient. I imagine it will be. It is now.


I didn't know about the fate of children punished for simply having an extra chromosome before we had Eon. I do now. I cannot pretend I don't. I believe that would grieve the heart of my Father. He is a champion of the weak. "Let the little children come to me," He said. He called caring for orphans "pure and undefiled religion," and He likens caring for "the least of these" as caring for Himself.


"Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done." Prov. 24:11, 12 NLT

We are not in a position to adopt, at this time. We don't meet the minimum income requirements for our family size. That's a hard pill for me to swallow, sometimes, but I believe God's timing is perfect. Until then, our hearts are willing. We advocate for orphans and support the adoptions of others. And we pray....oh, how we pray...that the precious children waiting will find their way home. 

Back Home Again, In Indiana*

When Eon was born, I received numerous copies of the essay, "Welcome to Holland." Although, I didn't agree with everything in it at the time, I thought it was a good enough analogy for what we were experiencing. I've since learned that some of my fellow moms in the Down syndrome community really loathe that essay and some really love it.

My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.


Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time. 

If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.

Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.

But I don't live there, anymore.

Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are. 

Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc.   Everyone's needs are special to them and, because they're my kids, they're special to me.


Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.


I love Holland, but there is just no place like home!


*Back Home Again, In Indiana  is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.