disability ministry weekly round-up {3-12-12}

A Disabled Adult Child, and an Always Uncertain Future "Reality has hit hard now that our older child has moved out of the nest but our youngest one never will. There is meaning in all of this when I let myself see it, but that can be hard when I’m changing a diaper or giving my 22-year-old daughter a shower. I struggle, nearly every day." {If this mother was in your congregation, how would you encourage her?}


Our Church Needs Brody "It is beautiful when you see children look past disability. There is something touching when you realize that they are not affected by the prejudice of our society. Brody is just Brody, and they too, were proud of him." {Does your church realize that Brody, who has cerebral palsy, is needed in your community?}


Darla, Cade, and the Boy at the Aquarium "We characterize people with Down syndrome by their challenges—much like we portray people in poverty by their problems. I’m so glad I’m not identified by what ails me. Chris? He’s the guy that is overly concerned by what other people think of him. Or, Chris? Oh, he’s a “considers-his-own-needs-above-all-others type of guy. Thankfully, I’m just Chris." {Do you talk about people with disabilities at your church by using their diagnosis or by using their name?}


20 Years Old Living with Russell-Silver Syndrome "I made it, but my father didn’t. I was in my mom’s womb trying to grow when the doctors saw that I was having trouble. “Failure to thrive” was written on my chart and there was concern. Ultimately, I was born a month and a half early at 2 pounds, 6 ounces, but my father was long gone by then. He didn’t want to have anything to do with a deformed kid." {Another dad, John Knight, has been transparent on his blog about the tough time he had when his son was born blind. Is your church a safe place for a dad to battle through the emotions - even the ugly ones - they might face when his child is diagnosed with a disability?}


Forgiveness for Moms who Fail "In my twenty-five years of pastoral ministry, I don’t think I have met a mom, including a preschool mom, who feels like she has done a good enough job." {While not special-needs specific, this article highlights a battle for moms, myself included. Is your church an affirming and encouraging place for moms struggling with these feelings?}


Ending the R-Word: Ban it or understand it? "Every time Ellen Seidman hears the word "retarded," she worries for her 9-year-old son, Max, who has cerebral palsy. She wonders if people will ever respect him, or see him as an equal, if they associate that word with people like him, who have intellectual disabilities. {I know we don't want youth and college students - from whom I hear the r-word more than other groups - to see Christianity all about rules, but are you willing to point out the de-valuing of God's creation every time someone who knows Christ throws around the word "retard" like it's nothing? I mean, you wouldn't be okay with other taboo words - you know, the ones we replace with #*&!$.}


Church helps with religious rites for special needs children "Most religious institutions today provide assistance for families with special needs children to be included in their services. The best thing for a family is to talk to their pastor about their own needs." {How will your church respond when parents whose children have disabilities talk to the pastor or another church leader about their needs?}


The Most Unlikely of Heroes "Emma forces each one us to see life through a different lens. She reminds us daily of what is truly important in life. It has been an incredible time for each one of us to learn to trust in God’s wisdom and sovereignty, especially during the times of suffering Emma has gone through." {This family adopted a daughter with Down syndrome. What does your church do to support families who adopt, keeping in mind that children who are adopted have higher rates of special needs?}


Autism - Don't Look Now, I'm Trying to Think "Children with autism look away from faces when thinking, especially about challenging material, according to new research from Northumbria University." {Do you usually gauge student attentiveness by eye contact? Should you reconsider that for kids with autism or with autistic traits?}


Very special worship "'Nathan's general view of the world is that it is unpredictable, challenging, and scary,' says his father, Seth Horwitz, 'and this provides a really comforting, secure moment.'" {This dad is talking about a Jewish service for kids with disabilities. What can your church do to create a comforting, secure environment for kids whose disabilities might make life unpredictable, challenging, and scary?}


Ministry brings families 'back to church' "'For a lot of families with special-needs children, they just stop coming to church because it gets too hard,' Morgan said, 'and this ministry is kind of something that helps bring people back to the church … and creating a place kids can share the gospel.'" {Where is that place in your church? If you don't have one yet, what would be the first step to creating one?}


Portland-area couple sues Legacy Health for $3 million for 'wrongful birth' after child is born with Down syndrome "The Levys filed suit against Legacy Health, claiming that Deborah Levy would have aborted her pregnancy had she known her daughter had the chromosomal abnormality." {How are you standing up for the lives God created?}

cherishing every detail we get about Zoe Amanda {and we received many new details last night!}

When you give birth to a child, you document every moment. The first breaths. The first outfit. The first bath. The first yawns. The first coos. The first smiles. And even some of the first cries.

We've planned to adopt since before we got married, but I didn't realize until the past month how odd it would feel to miss those firsts. What we will celebrate as her first Halloween, Christmas, New Year (ours and the Chinese one), Valentine's Day, and St. Patrick's Day will actually be her second. I'm not saddened by this, and given that we had planned to adopt an older child, we expected to miss more than just the firsts of some things. But still... it just feels, well, weird.

So when we get new morsels of information about her life, I gobble them up. I savor them. I usually hold on to the pictures and videos of her for a day or two before I share them outside of our family. I want time to cherish them before I pass them along.

Last night I hit the jackpot. Our adoption facilitator sent me answers to many questions about Zoe Amanda that we've had since we accepted her referral. I already shared with you that Zoe Amanda has some areas of brain damage called PVL and will likely be diagnosed with cerebral palsy once she arrives home. Before we accepted her referral, we knew that and had copies of her MRIs, and we also knew she was a preemie.

And here's what we know now...

She was 2 pounds and 15 ounces when she was born on October 24, and she was 14.5 inches long. The doctor estimated that her mother was 30 or 31 weeks along in the pregnancy, but he didn't know for sure because she received no prenatal care, having hidden the pregnancy from everyone. Zoe was breathing on her own, though she was given oxygen as a precautionary measure until they determined that her lungs were working fine without help. She stayed in the hospital for three weeks to gain weight before she was discharged, but she was doing so well that she wasn't in the NICU. She maintained body temperature well on her own and never needed to be in an incubator.

In less than three months - 12.5 weeks later, to be precise - her weight had increased to 9 pounds and 15 ounces and her height to 20 inches. Amazing growth in such a short time! She will begin therapy this week, but she is cooing and smiling and doing all the typical baby things you would expect for a baby with her adjusted age.

We also hear that she can have a bit of an attitude when she doesn't get her way. For example, yesterday the director of the ministry over there took some video of Zoe "talking" and then played it back for her on the phone; our baby girl got excited and cooed back at herself, but when the phone was taken away, she let out a screech and stuck her bottom lip out. (Genetics might not link her to her big sister, but it looks like the temperament might!)

In addition to cerebral palsy, she could also end up with a diagnosis of fetal alcohol syndrome, based on the history shared with us. However, her face doesn't show any of the three craniofacial indicators for that, so we'll wait and see. The exposure was definitely there in high enough quantities for her to be affected.

We learned other details about her background that I can't share due to confidentiality for her birth parents - both teenagers - but I can tell you this: I love that I'll be able to tell her stories about her birth, even though we weren't there. And we're also thankful that we chose to keep her Chinese name as a second middle name, because her maternal grandfather chose that name for her.

Oh, and one of the most encouraging tidbits?

"Sleeps well."

Praying that's true! :)

merry blogiversary! top posts from the past year {the works of God displayed turns ONE today!}

1 year
248 posts (249 if you count this one!)
1692 tweets
Visits from 84 countries

I love the community and connections I've made through this blog, and I can promise you that I have been the one blessed the most by it. Thank you for your comments, your questions, and your encouragement.

I have three posts waiting to go live, including a follow-up to Wednesday's post about children with disabilities in church, a post about international considerations for disability ministry (because we need a global perspective and because 10% of my readers are outside of the US), and a post answering a question I received via Twitter about starting a disability ministry. But those will wait until next week.

Today I'd like to take a look back at the ten most popular posts in the past year:

1. Michael W. Smith and a star-struck teenage girl 

2. "After-birth abortion" should be allowed because some disabilities aren't diagnosed prior to birth?

3. No partiality {James 2:1-13}

4. The biblical basis for special needs ministry

5. Wonderfully, fearfully knit together {Psalm 139:13-16}

6. Kudos to Target. Now, church, it's your turn.

7. every story has two sides but.

8. Fridays from the Families: Ministering to people with autism

9. In a church setting, how can you support a parent who might be in denial about their child's special needs?

10. Only sharing the gospel with 5/6 of our children? Not an option

Can I just say that I love that two of the top ten posts are Bible verses with no commentary from me? If my blog is bringing people to read from God's Word, then that will change lives and churches far more than anything I write.

Here are a few more posts - honorable mentions, if yo will - that are on my list of favorites, even though they don't make the top 10 as defined by visits:
As I move into the second year of this blog, what topics would you like to know more about so that you and others may be equipped to include people with disabilities in your churches and your lives?

four pieces of mail that have encouraged me this week

a letter from one sister to another
Jocelyn asked to make a card for Zoe Amanda. Here's the cover and the back, with labels she dictated to me.



(In case you're wondering, the pictures are modeled after this baby toy.)


Then the letter. Oh, what a letter! Jocelyn also dictated this to me, and I got all teary-eyed as I wrote her words.



Dear Zoe Amanda,
I love you. I'm Jocelyn, and I'm your big sister. And I have a little brother Robbie who is going to be your big brother. Our mommy and daddy are very nice. We have a dog named Napoleon, and he is a very nice dog. The whole family loves you, and we can't wait to meet you.
And then you can see her signature below.


a letter from the feds
This letter included the instructions and appointment details for us to get fingerprinted for the US Citizenship & Immigration Services office of the Department of National Security to make sure we're good folk. That's the next step in the federal approval process. This also means our prints will be in the system, you know, if Abby ever needs to run a check on us. (What? You say NCIS isn't real? Blasphemer.)


a letter from a friend who has been in our shoes
Such encouragement and wisdom! This friend has a newborn baby boy and an adolescent boy, both who joined their family in the past year or so. She and I haven't seen each other since my freshman year of college. And yet she was willing to encourage me with this note, from one adoptive mama to another.

Shannon,I just want you to know that I well remember the feeling of not having your child with you. It seems unnatural for him/her to be somewhere else, being taken care of by someone else. It is tempting (and futile) to try to control the situation. Know that you (and Zoe, and Lee, and Jocelyn, and Robbie!) are being bathed in prayer. The day will come when you get to hold your baby girl. 
our first purchase for Zoe Amanda
Well, if you don't count the checks for paperwork stuff to bring her home!

I'm a sucker for baby shoes. More often than not, baby shoes are the gift I get for friends who are expecting. They're just so cute, and when an online store had my favorite brand - smaller by See Kai Run - clearanced last week, I jumped at the opportunity to get a pair for our little girl, given that these are usually out of our price range.



And I think that last picture sums up our current circumstances well -
precious but with a long to-do list written on my hand.