Friday, December 31, 2010

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.


(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's a tragedy." "That's like saying leukemia or other diseases are cool."

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


(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?



(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


("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


(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



(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



(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.)

Thursday, December 30, 2010

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?

Monday, December 27, 2010

Moments of Sadness

I never really went through the grieving process I was apparently supposed to have when I had a baby with Down syndrome. I did experience about 5 minutes of raw fear after getting the diagnosis before they placed him in my arms. Once I held him, I knew it was going to be okay. A friend of mine had been updating family and friends during labor. I called her about 20 minutes after delivery to tell her he was here. I said, "He's here! Simeon Israel. He's the cutest baby with Down syndrome we've ever seen." She responded that she was sorry and I said not to be...that he was perfect. I meant every word. I also joked that we needed to get one of those bumper stickers that says, "My child has more chromosomes than yours". Acceptance came easily for me.

I don't know if previously considering adopting a child with Down syndrome or knowing I had a high risk helped prepare me, but I never got depressed over it. I have had moments of sadness periodically, though. Very few and far between them almost two years into it, but sometimes they come out of nowhere.

I had one the other day. I was shopping at Aldi and I heard the familiar sound of an insistent "Uhhhh!" I recognized it because Eon hollers it frequently when he's excited or wants attention. I don't notice it much at home because all the kids are loud around here. But in the middle of a crowded store, it was noticeable. As I was bagging, I saw her. She was standing in line with her mother pretending to talk on a cell phone. What she was saying was completely unintelligible, but she was obviously enjoying herself. She looked to be about 7 or 8 and had on the cutest sparkly tennis shoes.

I never know how to approach people, especially if Eon's not with me, but I decided to go for it. I walked up and said, "I think we have something in common. My youngest son has Down syndrome." The mom brightened and asked me how old Eon is and we chatted for a minute. Then I asked how old her daughter is. I was completely unprepared for her response. "Sixteen," she replied. My heart dropped into my stomach and I hope she didn't catch the dismay I'm sure I wore on my face. I mumbled something to the girl about being a "tiny little thing" and that I liked her shoes. She didn't appear to understand me.

We chatted some more and she mentioned something about "the other little girl I watch that's a month younger than her"...

Another 16 year-old that needs a babysitter?!

You're probably thinking, "Duh. Of course a teen with Ds might need someone to watch them." I know that cognition varies with individuals and people with Ds function at different levels, but I guess I hadn't gotten that far. I was unprepared to see a young woman with Eon's condition still engaging in behavior that Eon currently enjoys (loudly vocalizing and pretending to "talk" on the phone). It threw me.

And, the encounter has stayed with me. I'm still trying to process it and my response to it. I just assumed Eon would progress beyond the toddler he currently is. He is so typical in many ways, I sometimes forget that he's behind in other ways. My expectations for him are high. Now, I wonder if they're too high.

As I was writing this post, Eon walked over to Keturah's crib, signed "baby" and then, "sleeping". I asked him if he wanted to sit in my lap and he climbed up. He's doing great and I am so proud of him! I just need to remember to take it one day at a time.

Wednesday, December 15, 2010

Our Christmas Letter

I decided to write a different kind of letter this year. It seemed trivial to write about our achievements when none of them matter for eternity (with the exception of our newest addition, Keturah Joy:) and someone's life hangs in the balance. This is the letter I sent, instead:

Dear Family & Friends,

Merry Christmas! Instead of a traditional Christmas letter, we want to share with you what God has placed on our hearts in hopes that you will partner with us in changing lives.

Earlier this year, I prayed that God would break our hearts with what breaks His. Turns out, there is much that breaks His heart and the pain is almost overwhelming at times.

Most of you have heard us talk of Reece's Rainbow, an adoption ministry focused on finding homes for children with Down syndrome (and other disabilities) in other countries. Here in the US, there is a waiting list of families looking to adopt a child with Down syndrome. (There is also a termination rate of 90% for Down syndrome pregnancies, but that's another topic.) In other countries, when a baby is born with Ds, that child is left at the hospital and then sent to an orphanage, or "baby house", where they are available for international adoption. Once the child reaches the age of 4-5, they are sent to a mental institution (Please, please click on the link and watch. It's difficult to watch, but necessary to fully grasp what we are trying to communicate.) This particular institution is in Serbia, but very similar to those in Ukraine, Bulgaria, and Russia.

Elizabeth is a little girl who enjoyed an early childhood in one of the better orphanages (they actually have toys to play with). She was recently transferred. Please see some cute pics of her and read her story here.

Can you imagine? Can you imagine the fear and confusion she felt when she was transferred? Can you imagine the fear and hunger she feels right now as you are reading this? Can you imagine one of your children experiencing that? We can, and it's breaking our hearts.

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

Patti, a fellow mom of a child with Ds, is determined to see that another little girl, Olga, does not have to experience a similar fate. Olga in nearing transfer. Patti's family doesn't meet the income requirements to adopt, themselves, but she is working to see a Christmas miracle of a fully funded adoption account for Olga. So many families are willing to adopt, but the cost (around $20,000) is prohibitive. If Olga's account is funded, a family will step up to adopt her, to save her from life in a mental institution. When Patti started her efforts to spread the word only 10 days ago, Olga had less than a hundred dollars in her fund. Now, she has over $10,000! We are halfway there!

Visit Patti's blog to learn what the current count is and to find out how to donate. Pray and ask God what He would have you do for the "least of these". Ask Him how He would have you save a life. Be part of a Christmas miracle this year!!!

Please, visit the links I've provided and learn more. Feel free to pepper us with questions, as well! There are currently 147 million orphans in the world today. We cannot save all of them; but, we can save this one!

And the King will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.' Matthew 25:40

We challenge you to pray, as we did, that God will break your heart with what breaks His this year. Be prepared for Him to rock your world. :)

With much love and gratitude,
Shawn, Tara, Michaela, Elliana, Atalia, Benaiah, Zakkai, Simeon, & Keturah Lakes

Monday, December 6, 2010

The plight of the orphan

This breaks my heart. I can only believe that Jesus is with her and will protect her like we're asking Him to do.