links I'm loving in disability ministry: God's sovereignty, Down syndrome angels?, mental illness, & a new school year

Disability and the Sovereign Goodness of God: This e-book from Desiring God, by John Piper and Tony Reinke, is invaluable... and free!

My kids have Down syndrome - but that doesn't make them angels! This post is in line with a chat I had yesterday morning at church with a mom about how her son, a precious little guy with Down syndrome, is a sinner in need of loving discipline just like any other kid.

Where is God in mental illness? "While I can’t honestly say I’m glad to have a mental disorder, I do feel grateful for the way God has used it to enlarge my view of Him as He replaces my simplistic and moralistic childhood faith with something far more substantial: Trust in a God who has promised to complete what I cannot."

Where are you headed as a special needs parent for school? It's that time of year, the start of a new school year. Here's a post to remind us that families affected by disability have more concerns than their supply lists and class assignments.

~+~

Thank you to all my readers here who also visited the post I wrote in response to Pat Robertson. For the follow up to that post, click here. 

why I'm neither brave nor gracious

I've been called a lot of words I don't deserve in the past week: beautiful and obedient and gracious and grace-filled and sweet and honorable and passionate and amazing and courageous and inspiring. (In case you missed it on Friday, here's the post that prompted those kind words.)

You want to know the word that best described me the night before I posted our adoption news?

Terrified.

The week before, I sat trembling in my Bible study group because I knew God was moving in us to do something about this orphan named Jesse who would be renamed Zoe Amanda. I just didn't know how to tell anyone. I didn't know how to explain myself.

I thought we would be called crazy. (And a little part of me thought that we'd deserve that.)

I thought our friends wouldn't stand by us. (How I misjudged you!)

I thought our choice would be considered reckless, when we already had two young children and when I was still recovering from knee surgery and when I seem to collect chronic health problems. (No one brought up any of that.)

Friends knew we planned to adopt someday, but we had no homestudy started yet, we weren't on any waitlist, and we hadn't narrowed down a country or special need or age or anything else yet. We were caught by surprise, so we knew other people would be too.

I'm smiling in this picture, but I was so scared of how y'all would respond to the news.

the picture we shared to announce the news!

A little blond girl who is wise beyond her years was the one who gave me the words, days after our announcement.

We sat with my brother-in-law's family, and they asked why we were doing this. I tried to answer, and I stumbled over my words: "Well, this wasn't the country we expected, or the special needs we expected, or the age of child we expected, or the timing we expected, but..." I couldn't find the words to finish that sentence.

Jocelyn, who now dotes on her sister with more love than I thought she was capable of, jumped in. "But God said to do it, so we're doing it."

oh, how I love her!

You see, the reason I don't deserve any of the words at the beginning of this post is that I know myself. I know that I am as damaged and weird and hopeless as any of the orphans Pat Robertson dismissed last week. I, too, am broken by life in a fallen world, fractured by my own sin and by the sins of others along the way. I know my sin too well to boast of any of the words used to describe me since my post went live in the wee hours of Friday morning.

I can boast of the Savior who rescued and redeemed me, turning my broken places into cracks through which His light can shine. He does make all things beautiful in His time, in the words of Ecclesiastes 3:11, and I'm both humbled and thankful that He has allowed us to be part of His plan for bringing beauty out of the brokenness that began Zoe's life.

in our hotel room in Taitung, on the day she was discharged from the hospital in our arms. (that was six weeks ago, and she's three pounds heavier now than she was then.)

Oh, how I love being her mom!

P.S. - Zoe has an EEG this morning at 8am Eastern time to check out some possible seizure activity. She hasn't had any as far as we know, but her kind of brain damage increases the likelihood that seizures could occur, thus the test. Please pray for clear and conclusive results!

an open letter to Pat Robertson, from the adoptive mother of a child with brain damage

Dear Mr. Robertson,

I want you to look at this face.

Isn't she darling?

I want you to look at her because that's the face that came to mind when I heard your words yesterday.

On The 700 Club, you answered a question from a single mother of three children, each adopted from a different country. This mother wrote in for help understanding why the men she dated always left as soon as they found out that her daughter were adopted.

Your response? "A man doesn't want to take on the United Nations." And "you don't know what problems" there will be when you adopt. You continued with the cautionary tale of a family you know who adopted a "child [who] had brain damage, you know, grew up weird." As you disagreed with your co-host, you excused your comments by saying, "you just never know what's been done to a child before you get that child: what kind of sexual abuse there has been, what kind of cruelty, what kind of food deprivation."

I want you to know this: We didn't adopt a problem. We adopted a child. She was knit together in her mother's womb, fearfully and wonderfully made. She is an image bearer of the one true God. She laughs at me, loves her brother and sister, and cries when she's hurting or hungry.

She was also born with brain damage. 

And we love her.

Perhaps I'm naive to be writing this letter to you. After all, a year ago you said that a man could divorce his wife with Alzheimer's because she was "not there" anymore, less of a person than she had been when she married him. Two years ago, you said adoption "can be a blessing if you get the right child." Perhaps I'm naive in thinking that Zoe's sweet face would change how you think and speak about orphans like her, but it's worth a try because God used her face (and is now using her life) to change us.

You said that we can help and love orphans but that doesn't mean we have to take them - and, in your words, their "problems" - into our homes. When my husband heard your words, he said "No, we don't have to do it. We get the privilege of doing it."

That's a real man. I'm thankful to be married to him and thankful to parent these three darlings with him.

You said your friend's child "grew up weird," and that's certainly a possibility for our kids too. If "weird" involves caring for orphans and widows in the name of Christ and laying down our lives for others as Christ did and believing God's Word to be true, then I pray you'll have plenty of reasons to call each of our children weird.

It surely wouldn't be the first time someone used that word to describe us.

Sincerely,
A mom who is blessed by all three of my children


PS - If you'd like to see a video of The 700 Club segment that prompted this post, here's the only version I can find right now.

an open letter to Pat Robertson, from the adoptive mother of a child with brain damage

Dear Mr. Robertson,

I want you to look at this face.

Isn't she darling?

I want you to look at her because that's the face that came to mind when I heard your words yesterday.

On The 700 Club, you answered a question from a single mother of three children, each adopted from a different country. This mother wrote in for help understanding why the men she dated always left as soon as they found out that her daughters were adopted.

Your response? "A man doesn't want to take on the United Nations." And "you don't know what problems" there will be when you adopt. You continued with the cautionary tale of a family you know who adopted a "child [who] had brain damage, you know, grew up weird." As you disagreed with your co-host, you excused your comments by saying, "you just never know what's been done to a child before you get that child: what kind of sexual abuse there has been, what kind of cruelty, what kind of food deprivation."

I want you to know this: We didn't adopt a problem. We adopted a child. She was knit together in her mother's womb, fearfully and wonderfully made. She is an image bearer of the one true God. She laughs at me, loves her brother and sister, and cries when she's hurting or hungry.

She was also born with brain damage. 

And we love her.

Perhaps I'm naive to be writing this letter to you. After all, a year ago you said that a man could divorce his wife with Alzheimer's because she was "not there" anymore, less of a person than she had been when she married him. Two years ago, you said adoption "can be a blessing if you get the right child." Perhaps I'm naive in thinking that Zoe's sweet face would change how you think and speak about orphans like her, but it's worth a try because God used her face (and is now using her life) to change us.

You said that we can help and love orphans but that doesn't mean we have to take them - and, in your words, their "problems" - into our homes. When my husband heard your words, he said "No, we don't have to do it. We get the privilege of doing it."

That's a real man. I'm thankful to be married to him and thankful to parent these three darlings with him.

You said your friend's child "grew up weird," and that's certainly a possibility for our kids too. If "weird" involves caring for orphans and widows in the name of Christ and laying down our lives for others as Christ did and believing God's Word to be true, then I pray you'll have plenty of reasons to call each of our children weird.

It surely wouldn't be the first time someone used that word to describe us.

Sincerely,
A mom who is blessed by all three of my children


PS - If you'd like to see a video of The 700 Club segment that prompted this post, here's the only version I can find right now.

the adventure that was Zoe's MRI...

I already told you about the amazing results. Every day Zoe surprises us with one more things she has learned to do, and it's refreshing to operate with no expectations or worries about development.

(By that, I mean that we don't analyze "should she be sitting up by now?" or "is she falling behind?" We know our girl has some brain damage, and that frees us to just let her do her own thing developmentally without superimposing our concerns onto her abilities. It's a relief as a mom, in so many ways.)

On the day of the MRI, we were blessed to just leave for the hospital, because one of our old neighbors came and stayed the night at the house so that she could care for the big kids in the morning. (And then she stayed until about 5pm or so to help me throughout the day. We might have good neighbors at our new place, but we sadly left the best neighbors ever in the old 'hood.)

We arrived, following the signs to P3.

I made Lee slow to almost a complete stop so I could take a picture of this sign, because it made me chuckle.

And it's a darn good thing I did, because as I snapped the picture, we heard a loud clunk.

You can't see it in the picture, but that clearance bar was swinging (this, after we backed out of the deck). The picture is blurry because I was laughing.

FYI, the P3 parking deck is not tall enough to accommodate Suburbans, and we think the parking attendant's humor for the day is watching big vehicles try to drive in, given that he had the chance to stop us but didn't..

After we parked elsewhere, the rest of the check-in procedure was easy peasy. Our girl - not showing signs of hunger at all, thank you Jesus - hung out with Daddy and checked out her reflection in the glass.

Oh, how I love watching him fall deeper and deeper in love with her. See that smile on his face?

Then again, who wouldn't love that face? She's a cutie.

And she knows it.

In the spirit of Jocelyn, who loves giving Zoe bunny ears in pictures, Daddy got in touch with his immature side.

"Mommy, can you ask Daddy to act like a grown-up?"

I checked her in and placed the medical bracelet on her little ankle.

And, yep, she was still in a good mood!

Even when Daddy accidentally banged her head into this picture as she was fascinated by her reflection.

Meanwhile, I assumed this sign wasn't directed at me. I think having your baby girl sedated grants you photography approval.

We sat in the same waiting room where we had been when Robbie had his MRI, and then we were escorted back to the same pre-procedure room with nautical murals.

Robbie had been fascinated by the oxygen light on his toe prior to his MRI, so I had to take the picture of Zoe's! She didn't really care about it, though.

She did, however, like her hospital gown and want to play with it instead of wearing it.

But the murals were enough to distract her long enough for Daddy to dress her.

I love seeing her smile up at him.

While it looks like she's yawning here, she's actually laughing in anticipation of Daddy's tickling.

Gotta keep her modest by tying the back closed!

I think her hunger was hitting her at this point, but it was time for her to get sedated - first by mask, then by IV. (She takes after me - a genetic thing, of course - in having terrible veins, because it took seven sticks in her hands and feet before they placed the IV. Made me thankful she was already sedated before that began and I was in the waiting room instead of watching them use her as a pin cushion.)

Speaking of the little mask, here it is! We were brought back just before she woke up.

The rules require a baby to drink a few ounces of a clear liquid like Pedialyte before going home.

This is what she thinks of Pedialyte.

So they broke the rules and just let us feed her formula, even though it would make everything yuckier if she threw up due to the anesthesia. (By the way, according to the nurse, Zoe got the same sort of drugs that killed Michael Jackson. Of course, not in the same doses or reckless manner, the nurse made sure to add.)

As we left, Zoe was supposed to be in the stroller we were told to bring with us. But when a sleepy baby girl is cuddled up to Daddy, they let that rule slide too.

And then we might have pretended that Jubala was on the way home from the hospital - it isn't - because Mama needed her beloved iced almond latte to go.

The end.