my EEG torture {a guest post from Zoe}

Yesterday, Mom took me to something called an EEG. I didn't know what that meant, except that I had to leave my big brother and big sister at home. I didn't like that part.

Then we got to the doctor, and they did the torture procedure. Here's how I felt about that.

Yeah, it wasn't cool.

We arrived and rode the elevator to the second floor. Then Mom filled out some forms while holding me.

A lady who looked nice came to get us.

We sat in a chair, me on Mommy's lap. The lady who looked nice got out a measuring tape.

As she used it to measure spots on my head and make orange crayon marks on my forehead and scalp, I decided that she might not be nice after all.

Then she put goop on my head, put a little thing Mom said was an "electrode" on the goop, added a tiny piece of gauze, and then slapped on a piece of paper medical tape to keep it in place. (Okay, okay, she didn't really slap it on.)

Then - get this - she did the goop-electrode-gauze-tape thing again. 28 TIMES, for a total of 24 electrodes. (Those four extra applications were thanks to the Tao Kwon Do skills my big sister taught me... the ones I used to tear a few off before she finished, just to show her who was really in control.)

Yes, I'm a little proud of that.

She tried to calm me down with a Barbie movie and an obnoxious animal noises toy. I would have none of it.

Then she - the lady who looked nice but really wasn't - wrapped my whole head in gauze so I couldn't yank any more off.

Why's the picture so dark? Well, because the next thing we did was go to rest on a comfy bed in a room that Mom said looked like it belonged on Pinterest. The lighting wasn't so great in there.

Well, except for when the not-nice lady thought it was a good idea to make several strobe lights go off in my face. (Mom says it was necessary for the test. Something about stimulating seizure activity if I have an undiagnosed disorder. Whatev. It wasn't cool.) The lighting was great during the strobe show. That is, at least every other millisecond or so.

After gooping and electroding and taping and gauzing my head and flashing lights in my face, can you believe that the lady wanted me to calm down and even go to sleep? I fought it. Hard. Screamed for 20 minutes straight. That'll teach her. I wasn't planning to give in to her evil demands just so that her EEGinator could check out my brain, but then Mom sang some songs to me.

And I gave in.

I napped for about 35 minutes and then woke up and cuddled with Mom for 20 minutes. 

I forgot about the junk on my head for a bit, so I thought we were done when that lady came back. She had warm water and a washcloth. Thankfully, the paper kind of medical tape comes off with water so she didn't have to pull my hair (though, evil as she was, she might have enjoyed that), but she still wet me down and took everything off and left me with goopy crazy hair (thus the style in these pictures).

Yeah, I needed my paci after that.

Mom got some smiles out of my back at the car, but I was just humoring her.

Mom smiled some real big smiles today, though, when we got the news that my EEG results were completely normal.

Which I think means that I never have to go through that torture again.

Thank God!

(Note from Shannon: The nurse really was a nice lady, even if Zoe didn't understand why she did what she had to do! From my perspective, the test went just fine... and, of course, we love the results.)

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.