Five years ago, Dorothy and I traveled to Korea to bring home Joy. “The Daddys,” as our husbands were dubbed that trip, agreed the kids in both families would be saner with a parent at home. And God knew that Dorothy and I could use a vacation . I think it was the last time either one of us got so thoroughly away for some R & R.
The girls and I have so enjoyed looking through the hundreds of pictures Dorothy and I took that trip that I want to post some in honor of Joy’s coming home day, five years ago.
Our first meeting
This photo of Joy looking at Dorothy reminds me of the P.D. James story where the little bird asks everything he sees, “Are you my mother?”
This is not Joy, but her twin sister Amy, who we traveled across the country to meet.
Amy was a tinier version of tiny Joy. (Joy was 12 pounds at 13 months, when we brought her home.) Joy and Amy were reunited for the first time (since their birth at 26 weeks gestation) when they were three. (Here and here.)
Faith, Mercy, and Hope can’t believe how young they were (8, 4 & 3) when Joy came home.
My girls’ ‘”cousins,” Auntie Dorothy’s children, were not only younger, but two fewer five years ago .
The girls are requesting a follow-up post with some of those quintessential Korea pictures that remind them of our family trip to Korea two years ago. The sunshine and spring flowers in Korea that trip are an antidote to the two inches of new, fall snow outside my window on April 22 –predicted to be a total of 6 inches by the time you read this . So I’ll let them pick those pictures and post them next.
Limbs of Hope founder Hope A. Bevilhymer
Ideally every child in the world would be able to afford and have access to skilled people who can make a hearing aid, AFOs,or prosthetic limb, custom-built to that child’s unique needs. But that ideal isn’t possible, not even for kids who live in the United States. In the U.S., kids may have access to a Shriner’s Hospital or to a Federal program like Medical Assistance that might fill the gap. But those programs don’t exist in developing nations. And right here in the U.S., some families can’t afford to enroll their children in programs like MA that are income-based and come with fees.
Two years ago when I wrote this post about my conflicted attachment to Joy’s braces, I could not find any organization that recycled AFOs. Not so today.
Wheels for the World is a well-known ministry that matches new users in the developing world with wheelchairs previously used in the first world. Other non-profits, many of them faith-based, have stepped up with a similar philosophy: that a device like a hearing aid or a limb custom-made for another child is not ideal, but is better than nothing for a child who has access to none. Here are some of them.
Hearing Aids: Starkey Hearing Foundation
AFOs, SMOs, crutches, upper extremity splits: Embraced
AFOs/splints for Club Foot: Club Foot Club
Joy’s latest set of AFOs arrive in two weeks. I think I’ll keep her first, tiniest pair — call it this special-needs parent’s version of bronzed shoes . But this time I won’t add her current pair to the bin with her previous five sets. I’ll box them up and ship them to Embraced in Atlanta.
This is another post for the grandparents and our friends in Korea: photos from Joy’s sixth birthday party . 이 한국의 조부모, 친구의 또 다른 게시물입니다 : 경희대 여섯째 생일 파티에서 사진.
Joy learned how to blow this year. It was the first time she helped blow out her own birthday candles! 기쁨은 올해 입술을 통해 공기를 불어하는 방법을 배웠습니다. 그것은 그녀가 자신의 생일 촛불을 끄러 도움 처음 이었어!
This is also the first birthday cake she has ever eaten: chocolate . 초콜릿 :이 또한 그녀가 보아온 먹었었고 최초의 생일 케이크입니다. 이전 그녀는 입안에 케이크 질감을 좋아하지 않았어요.
And the first time she has been able to sit well enough on her own to open presents . 이건 그녀가 선물을 열려면 자기 스스로 충분히 잘 앉아 할 수 있었던 이번이 처음이다.
When Joy opened this package from Grandma I asked, “Joy, what is it?” She answered, “Tags! Tags! Pick a number! Pick a number!” 기쁨은 할머니에서이 패키지를 열 때 “기쁨, 무슨 일이야?”질문 그녀는, “태그를! 태그! 번호를 선택합니다! 번호를 선택!”대답
Inside were two shirts and a pair of pants. But best of all, they bore Joy’s beloved tags. The gift for me was hearing her correctly label the symbol on the tag a number. She adores letters and I didn’t know she can differentiate a number from a letter. 내부는 두 셔츠와 바지이었다. 그러나 무엇보다도, 그들은 경에 사랑이 희 태그를 낳았다. 나에게 선물 그녀가 올바르게 태그에 번호를 기호에 레이블을 듣고되었습니다. 그녀는 편지를 좋아 하죠 그리고 그녀는 편지에서 번호를 구분할 수 있습니다 몰랐어요.
“This is a number,” she told herself aloud, looking at the number 5 on the tag. “This is a number. This is a number!” ”이 번호입니다,”그녀는 태그에 5 번보고, 큰 소리로 자신했다. “이 번호입니다.이 번호입니다!”
Speaking of numbers, if you ask Joy how old she is, and she replies, chances are she will say, “I am four!” 당신은 그녀가 얼마나 오래된 기쁨을 요청, 그녀가 대답하면 가능성은 그녀가 말하겠습니다 “나는 네거야!”
She was four when she learned to answer that question and hasn’t felt the need to update her answer since . 그녀는 그 질문에 대답하는 방법을 배웠 그 이후 그녀의 대답을 업데이트 할 필요가 느낌이 들지 때 그녀는 네 살.
But new this year is her ability to answer the question, “Joy, how are you?” 새로운 올해 질문에 대답하는 능력입니다 “라고 기쁨, 어떻게 당신은?”
“I am happy!” she replies, “How are you?” At least that’s her response when she replies, which is not always. But when she doesn’t respond with words, she still answers our question. She looks at us and smiles . ”나는 행복하다!” 그녀는 대답, “어떻게 당신은?” 그녀는 단어 응답하지 않는 경우, 그녀는 아직도 우리의 모습을보고 미소 짓는하여 질문과 대답을 제공합니다.
When all the presents were opened, Joy surveyed her options and made a request that will surprise no one who knows her: “I want BUBBLES!” 모든 선물이 열릴 때, 조이 그녀 옵션을 조사하고 그녀를 알고 아무도을 놀라게하지 않습니다 요청을했다 : “! 나는 거품하고 싶어”
Today is Joy’s sixth birthday and I promised our friends in Korea some photos . 오늘은 6 생일을 경 희와 내가 한국에서 일부 사진을 우리 친구들을 약속했다.
The girls love attending Korean Culture Camp every summer. These photos are from the last day, while they awaited their turn to go on stage and dance.
소녀 매년 여름 한국 문화 캠프에 참석 사랑해. 그들은 무대와 춤에 가서 자신의 차례를 기다리는 동안이 사진은 마지막 날까지입니다.
On the first day of school. 학교의 첫 날에.
Playing in our house. 우리 집에서 재생.
Visiting a farm where we buy apples and pumpkins every fall. 우리가 모든 가을 사과와 호박을 구입있는 농장 방문.
The girls love gymnastics and had a joint birthday party at their gymnastics center. 성 아와 소라는 체조를 사랑하고 체조 센터에서 친구들과 생일 파티를 공유했습니다.
When we remodeled the kitchen we created a desk for Joy at the height of her wheelchair. 우리가 휠체어의 높이에 기쁨을 위해 책상을 만든 부엌 할 때 우리는 리모델링.
This is how much snow we still have in our yard, even though the calendar says it is Spring! 이 달력이 봄하다고하더라도, 우리는 여전히 우리 마당에 얼마나 눈입니다!
“Now as they went on their way, Jesus entered a village. And a woman named Martha welcomed him into her house. And she had a sister called Mary, who sat at the Lord’s feet and listened to his teaching. But Martha was distracted with much serving. And she went up to him and said, “Lord, do you not care that my sister has left me to serve alone? Tell her then to help me.”
But the Lord answered her, “Martha, Martha, you are anxious and troubled about many things, but one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.” Luke 10:38-42.
I have always identified with Martha in that story.
This is not for pastors’ want of admonitions to strive to be a Mary. And it is not for want of aspiration on my part. If Jesus says it is true, it is TRUE and I aspire to live in light of the truth.
It’s more like my natural human bent is toward Martha-dom. I see things that need doing and I enjoy getting them done. I’m also an introvert and often find tasks less taxing than people.
Then I met MS. It’s message: my body was rebelling against decades of multi-tasking. So I’ve spent the past four months working myself out of responsibilities. Finishing commitments outside my family and not accepting new ones.
Old habits are hard to shake. I still feel much better at doing than being.
How does one do “being”?
That question has had my mental cat chasing its tail for three weeks. And this is what I’ve noticed.
Other people know me by what they see me doing.
I have been acutely conscious of this since December when the remodeling contractors arrived. I could be having a perfectly fine moment trying to exercise being, and hearing the door bell ring zapped me into doing mode.
See what this picture says? I had flashbacks to sit-coms like Leave It To Beaver where a mom answering the door walks on camera wiping her hands on a dish towel: evidence that she was not sitting around doing nothing before the camera turned on.
I gave up on being each day as long as these relative strangers and their power tools lasted. My rough compromise: I used the hours they were here to accomplish the daily things that need to be done for a family of six even in the midst of my undoing.
Like laundry. Trying to cook in vestiges of my kitchen. Wiping endless rounds of construction dust.
As I did, I noticed this: unless I was up (away from my computer and my work), being seen being busy doing things, these strangers wanted to visit while their power tools idled. My busyness became a faithful sheepdog nipping at the heels of those standing on my new kitchen counters in their work boots. Like, See how much you can accomplish, and how fast if you don’t waste time making small talk with each other or your clients?
Please, my housekeeping begged. Get the job done and give me my
life space back.
I tried to exercise patience and mercy and politeness the first six, scheduled, weeks of the project. After all, it wasn’t their fault we needed them to remodel the part of the house I live in.
But I didn’t do so well the six extra weeks they took to finish the job.
Yet I learned something about people: many have no problem being, when I expected them to be doing. In fact some of them seemed distinctly uncomfortable just working. As if being –being friendly, being sociable, being open –was as important as wiring the lighting or tiling the wall.
You know: they might do a better job sitting at the feet of Jesus than I do.
But just when I was ready to conclude that as an introvert, I need space and stillness in which to fledge being –sounds like the classic formula for writing, doesn’t it? --the strangers stapled up the last LEDs under the cabinets, packed up their tools and went home.
The same week my children came home from school for Spring Break. This week. Nix the coveted space and stillness.
But surprisingly, not the being.
In the still moments between contractors, I’ve been growing familiar with my undoing.
To my astonishment, I realize that much, necessary work happens when I devote time to being. I might say the interior of my heart is shabbier and more dysfunctional than my old kitchen.
My former life was so over-scheduled that there was no time left over just to be. I rarely could be in the moment because each one was double or triple booked with tasks I had agreed to do or required of myself.
““Martha, Martha, you are anxious and troubled about many things, but ONE thing is necessary.”
And while I sat on the couch on Monday, being, in the midst of my swirling children, something wonderful happened.
Hope flitted to the couch and stilled herself in the space at my feet like a butterfly tucking into a cone-flower.
“What are you doing?” she asked nodding at the Bible open in my lap.”This week’s Sunday School lesson?”
“No,” I said. “I’m done teaching now. I’m in the New Testament. Just reading. Waiting on God.”
“Waiting on God?” she asked. “Like you expect him to show up? Like in a burning bush?”
I smiled. “No. Not in a burning bush. But yes to expecting God to show up. These are his words, you know? I am troubled about something in my work. But God is not having a problem. So I’m just waiting for him to tell me what to do.”
“Has he told you yet?” Hope asked expectantly.
“No. Not specifically. But he will.”
“Okay, then,” she said, stirring her wings for take-off. “I’ll just leave the two of you waiting on each other.” She launched off the couch. “But when he shows up, I want to know what he says.”
This is my undoing.
This is an Invincible Mom. She has things so in-control she has time to bleach her teeth, dye her hair and do Pilates. And she’s smart enough to wear safety glasses as she zooms through her family’s atmosphere righting wrongs.
Every story needs a beginning. So I might as well pick one: ten years ago, when we first began pursuing adoption.
When you know the God of the universe orders all things, it is an easier thing to look squarely at a “high risk” referral and see the High God who ordained that child’s circumstances, and your own, and to find divine coincidence in the fact that her eyes, and no one else’s are looking back at you. When you know the God of the universe can do all things, it is an easier thing to say, “Yes,” trusting He will do what you cannot.
It is with genuine faith I stepped out into adoption, not with my fingers crossed.
I naturally imagined that I was part of God’s plan for my children’s future. It’s so logical that I didn’t even stop to think about it. Until some unexpected possibilities like blindness, cancer, and MS, popped up last April.
In fact when my doctors discovered a key vitamin deficiency that could account for my symptoms, I thanked God and in my heart thought, “Of course it turns out to be no big deal! God orders all things and knows there isn’t room on out family plate for any new Big Deal things right now. He knows my family needs me.”
The deficiency was corrected and all was well. For six months.
Late this fall it was time to revisit all the Big Deal diagnoses set aside last spring. The result: MS.
That diagnosis took a lot of getting used to. Not only did MS impeach my ideas about being there in my kids’ future, it revealed my folly in thinking I was handling the extra stresses of special needs parenting pretty well. It felt like my body betrayed me, like it wasn’t up to the “Yes!”s sung by my mind and my spirit.
And I felt foolish that I had not realized that caring for my physical self, too, was not optional. How could I have memorized, but never really pondered verses like, “Do you not know your body is a temple for the Holy Spirit within you, who you have from God?” (I Cor. 6:19-20)
The context in which to ponder them wasn’t with me back in my AWANA days. It is now.
My neurologist didn’t quite say, “Your body is like an overtired, overstimulated, hungry child melting down in the grocery store when asked to make a simple decision like, ‘Do you want plain or Honey Nut Cheerios?’” But she might have; it is an apt analogy.
It as been painfully humbling to realize that in some areas of my life God has to do something dramatic to get my attention –like extinguish neurons –because he knows that to some messages, I am deaf to the still, small voice I might have listened to all along.
I have struggled not so much with the question of would God be there. With the diagnosis, I found my spirit reacting with the same glorious “Yes!” I experienced in the days immediately following my husband’s heart attack: God is sovereign and his plans are unshakable. My eternal joy in His presence was secure.
Instead I struggled instead with a very new thought (to me): my children’s security here on earth. My invincible God would be there for my family. But He might choose to be there in some way that did not include me.
Or did not include the same me we’ve all come to depend upon.
Families are complicated, even without special needs. Over time, moms, especially, become really good at juggling the ever-changing array unique to their family. We understand our children and our spouse better than anyone short of God. It is really easy to imagine ourselves essential to the mix, especially as long as we have children living at home.
And with special needs in the picture, some of us realistically imagine some children will never leave home. Or, if they do, never leave our guardianship.
Therefore we must be invincible; we are essential as far into our children’s future as we can foresee.
That’s where my faith has been most stretched in the past three months: reckoning with and beginning to trust that God can do my family without me. Not that He will necessarily choose to. But because He is God. And if that is His plan, then it will be good. For all of us.
With thanks to Dorothy for starting this conversation with her post, Scary?