Peanut butter and dragon wings

Confession: My son caught me crouching in the pantry with a large spoonful of peanut butter and honey halfway to my mouth.

pb n honey_0120

??!!?? he said.

The spoon made it the rest of the way, hastily.

Regan, I said firmly, I am gathering shthrength to care for my children. Now go play.

*

Three weeks of intense coughing by Mrs. Zook developed into 100% of her kiddos sick, including foster-baby-for-at-least-the-weekend who turned into foster-baby-for-at-least-two-weeks and then began upchucking violently. The washing machine stopped working and several inches of water pooled in the basement from all the rain. My mother got her first chemo treatment and my sister arrived from Israel, but I stayed away for the sake of all those germs.

A great weight loss program, all told; I highly recommend it. There is so little time to actually eat.

That is why I was crouching in the pantry fortifying myself with a chunk of peanut butter. I figured it was better than eating the entire bag of York mints.

And it was within reach, too.

But things are looking up. My man hotwired the washing machine and drained the basement. My friends sent food and comforting text messages, despite sickness in their own troops. I made it to the doctor, and the baby stopped puking (and oh, she is sweet), and the coughing bug caught the final child. We are fresh out of children for this bug to catch. Unless it starts catching them over again, which—heaven forbid.

*

My friend Anita owned the one piece of clothing in the world that I coveted, a webbed scarf knitted in a dragon’s wing pattern, deep turquoise with flecks of all colors woven through it. Her mother made it for her; not the kind of thing you can go buy at Walmart.

The week after Christmas I got a surprise package from my friend Heidi in Canada. I unwrapped a beautiful light turquoise store-bought scarf with flecks of color all through it. Hey, my son said. That looks kind of like the dragon’s wing.

I laughed in delight, and wrapped it around my shoulders. I wore it in season and out of season, matching and not matching, shelter me in the shadow of your wing. His provision is not a sparrow’s wing, as I always imagined, but something akin to a dragon’s wing. I wore it on the night the baby came and on the nights I sat up with her and I wrapped it around everyone I rocked to sleep.

scarf n baby_0090

I think He sent it on purpose, right before my crazy time. I wore it till I could feel it around me whether I was wearing it or not. I’m wearing it now.

I debated and debated about the color, Heidi said. I thought you liked blue.

*

I had to fill another spoonful of peanut butter and honey for the sake of a photograph, but I didn’t mind. Neither did Regan, who stayed home sick today from school. He got to eat this one.

regan_0121

The rest of the story

Confession: I told you I miscarried a tiny baby last January. I didn’t tell you the rest of the story. Of necessity, this post contains personal details I would not normally share publicly. There are not many; I have been as discreet as I could. But I ask, especially if you are male, that you read respectfully.

The Rest of the Story

The problem with backing up to the beginning of the story is that it’s hard to know when to stop backing. You pass through months and years of events-that-led-to, and land not only in the hospital where you were born, but somewhere just before the book of Genesis, when all these things were developing in the heart of God. So I can’t tell all the rest of the story.

The piece I am going to tell you now started the month before my miscarriage, in December of 2014, when we said yes to a dream opportunity. A newborn foster girl was coming into care. Her older siblings had all been removed from the home, one was being adopted right now, and there was no kin. Would we be willing to take her? Continue reading

(briefly) The mother of seven

On this amazing day

I get to nurture seven children in my home.

Three born to me, children of love—

our kids

Angel Boy, for one more day—

angel boy

Little twin sisters, arrived last week to stay for a time—

twins

And—

announcment

(yes, this is an announcement)

An unborn child, due to join us in December.

My heart is full to bursting.
The Lord has given and taken away, blessed be His name.

Happy Mother’s Day, to all women who pour love every day into the heart of a child.

Dealing with Body Fluids in Children with Special Needs

Our time with Angel Boy is ticking down, down, down. We feel joy in the success of his family, and sorrow at the thought of letting him go. It’s been an intense seven months, in which we learned more than we taught. Some things were very hard, and I will not miss them, but oh, so many I will…

This post will mean little to many of you, but I put it out there because I want to pass on the things it took us too long to learn.

Mothering any child exposes you to all types of body fluids, but when we began parenting a preschooler with Angelman’s Syndrome, on a liquid diet, not potty trained, and prone to everything from gagging to nosebleeds, our experience with childish fluids went to a whole new level. I remember the day when, desperate for answers, I googled “dealing with drool in large kids.”

Here are some things that helped us. I share them on the off chance that they will help you too.

1. Wet wipes—lots and lots of wipes

wipes_1483

Just keep them on hand, tucked in your purse, in your vehicle, in various rooms of the house. You will need them for diaper changes, spills, leaks, mishaps, and random boogers.

2. Waterproof pillowcases

pillow_1480

After we got tired of buying new pillows, we stumbled on this easy fix. Now, drool in the night or throw-up episodes don’t ruin the pillow. We layer the waterproof case between the pillow and a traditional cloth case.

3. Washable bed pads

pad_1465

They work like a charm. These are quilted for thickness and durability, lined with waterproof fabric on the back. They absorb any liquid and protect a mattress.

4. One-piece pajamas

pjs_1472

I will say this as briefly and respectfully as possible: in case you haven’t noticed yet, kids are squirmers, disarrangers, and explorers. Sensory kids? Doubly so. One-piece, footed PJ’s keep a child’s diaper in place. We went from “regularly soaked through by morning” to “comfortable, dry, and as it should be.”

And lastly…

5. Big-boy bibs

bib_0526
bib_0527
bib_0532

Some people call them bandana bibs, for their rodeo look. You can make your own, or buy them online. They combine a suave older-boy look with great protection for clothes. Flannel bibs for light droolers, terry cloth for heavy hitters. If you line them with waterproof fabric, they won’t soak through to clothing. I never got my pattern quite down before Angel Boy’s drooling dried up as suddenly as it had sprung.

Thank you, Jesus.

Caring for a child with special needs

Confession: I don’t usually write about my extra children until they leave us, but little Angel Boy is an ongoing part of our lives for now. I feel deep respect for both him and his family, and will not share photos or case-sensitive information concerning him. The things I write in this post have been approved by a voice I value.

What a joy it’s been to care for a “special needs” child!

Until I had one, I didn’t understand why mothers bridled at the word “handicapped.” Not many years before that it was “retarded,” which now sounds like an unthinkably cruel insult but at the time simply meant “delayed.” Well, now I bridle at all the wrong words too. I get it. Though I think “special needs” is kind of funny, actually—I can’t help wondering What child does not have special needs?

(I have a few special needs of my own.)

Well, he has been a joy.

I’ll never forget the first time I looked deeply into his eyes and knew I was connecting to the real person inside. I was sitting in church singing “Be Still My Soul” with him astride my lap, facing me. Suddenly his cloudy blue eyes had wandered up to mine, were gazing straight into mine, and I was singing a promise: “Be still, my soul! When change and tears are past, all safe and blessed we shall meet at last.” He got it, I know; and all of a sudden I did too.

Our journey with our first three kids prepared us to love this one. I’d already had to face a few key truths and make them my own.

  1. Motherhood is not easy street.
  2. People will not always understand.
  3. My children don’t have to make me look good.
  4. Being the creators of a PUBLIC SCENE is not, in fact, the end of the world as we know it. We’ll live.

But there are more, with little Angel Boy, and I have to learn fresh. I just didn’t know.

  1. His simple needs are so refreshing: no complexities, no drama. Just bottles, diapers, and cuddles—lots of them.
  2. My eyes have opened to an entire wild underworld of special needs. Seen through the lens of my son’s interests, the world seems full of absurd omissions: Are there really no in-store diaper sizes between 6 and Depends? And WHY can’t they make these shopping cart child-seats bigger? What do other mothers do?
  3. He has grown compassion and adaptability in our other three children. How good it has been for them to live with a child who breaks the norm! “But Mommy, I don’t want people to stare at him!” “Nobody will stare, sweetie. And even if they do, why should you care?” “Because I love him…”
  4. I can swallow my pride and gratefully accept public assistance for expensive formula I can’t afford.
  5. I have to recharge. The burnout caught me off-guard: that six days out of seven, he’s a piece of cake, and suddenly on the seventh I can’t take it anymore—the drool, the vocalizations, the intensity. I need to get some space, take a break, come in clean—and unexpectedly, it is okay again.
  6. We have met so much kindness from others. Cautious questions to us, gentle responses to him, easy affection, affirmation where we least expect it. Two nights ago I heard a five-year-old friend say to my daughter, “Is that your baby?” [He’s almost as big as they are.] “Him? Yep. He’s like a baby in a big boy body.” “Aw. He’s sooo cute. He has those chubby little cheeks…”
  7. Being a team player is awesome. I won’t kid you: this is one thing parents “in the system” have going for them that conventional parents often don’t, or have to fight for—a team approach. We work hand in hand with the birth parents, the counselor, the school staff, the caseworker, the designated nurse, the resource agency, and the legal guardian, among others. It’s incredibly frustrating if a simple decision has to be made and I realize I’m not authorized to act, but it’s a lifesaver on the big issues like What is best for him now? What’s a reasonable goal to work toward? How concerned should I be about this behavior? A lot of people are working together on this. We’re not alone.
  8. The “limitations” of a child with special needs can be his most endearing features. He accepts others completely, trustingly. He’s darling and loveable and innocent. He will never walk away from God or hurt another person or choose to do wrong.

In short, it’s been a most blessed path—full of the human and the divine, the joyful and the crushing and the redeemed. And we haven’t walked to the end yet.

*****

I’m sorry I won’t be able to answer any questions about him and his time with us. Please understand—

But what about you? Do you love a child with “special needs”? I’d sure welcome your advice.