Please pray for our friends

July 17, 2015 at 9:21 PM by Susanna

Many of you remember my good friend Becky, who owns the Good Neighbors Candle Co. and who stepped in to blog for me (and was right there with us, ministering behind the scenes in many other ways) last summer when my world was ripped to bits by the traumatic loss of Tommy.

She and her family are experiencing their own crisis now, and we would love to know many others are praying for them.

Our church fellowship was still rejoicing with Becky and her family over the news that her daughter Chelsea was engaged less than two weeks ago to a fine young man named Chadd.

Now we’re sharing their shock and sorrow over this news.  Chadd is still under sedation and has a long road of recovery ahead of him, but my heart aches knowing he will eventually have to hear the devastating details about what happened.

Would you please pray for complete healing for Chadd’s body and emotions?  Would you also pray for his family, for Chelsea, and for her family, for strength during this time of crisis as they surround Chadd with their love and support?

As of right now, Chadd doesn’t have a public Facebook page, but if that changes I will write an update post with that information.  In the meantime, Becky will update her blog as she is able, so feel free to check Hospitality Lane.

Thank you, praying friends.

 

 

 

 

Traveling with Katie

July 10, 2015 at 10:02 AM by Susanna

 

Katie didn’t know it, but she was about to embark on her first plane trip since coming home from Bulgaria more than three years ago.  I was unsure what it would be like to fly with a child in a wheelchair.  We took her along with us because Daniel was still recovering from extensive knee surgery.

 

Katie, 13 years, Benjamin, 2 years, and Peter, 8 years~

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Kate took the whole experience in stride…the looooong wait times for flights delayed by hours…the ensuing mad rushes to catch the next flight……the ear-popping steep descents.

 

Didn’t want to miss a thing~

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And the dramatic, heart-stopping flight through a thunder-and-lightning downpour in the pitch dark, swaying and dropping.  In a creaky little bus thousands of feet in the air.

She did look at me for confirmation that all was well during the worst turbulence.  Thankfully, she looked at my reassuring face and not at my white-knuckled grip on the arm rest.

She made her own fun during the boring wait times, and practiced her growing walking skills whenever possible.

 

Happy goofy girl~

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At the beginning of our travels, she tried her very best to catch the attention of every stranger who came within yards of her.

 

Here, she’s keeping track of where the closest stranger is~

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She almost seemed to understand that we were IN the plane, going UP, UP, UP in the sky.

 

Age 13, June, 2015~

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The contrast between the past and the present Katies were ever-present in my mind.

 

 Age 9 1/2, November, 2011~

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Although we didn’t lay our heads on our hotel pillows until after two am that first night, the children and I made it down to the indoor pool the next day while Daddy was in board meetings.

 

Just look at that beautiful chub~

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The children started out cautious and shy, as we are more accustomed to back country creeks for our summer water fun.

 

Katie smiling at the noise her finger made squeaking along the wet tile~

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Ben wanted no part of the warm spa water, but Katie and Mama soaked it in side by side.

 

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We wanted to encourage the children to venture out a bit more, so we stopped at Target after supper, and picked up…

 

Katie, utterly thrilled at the splashing noise and commotion~

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…some big floatie rings.

 

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I had been braced for a difficult week in a small hotel room with three young children, all our luggage, two port-a-cribs, a wheelchair, and a big adaptive potty.  I wondered where we’d find enough private space for her potty, where she couldn’t reach things she shouldn’t get into.

What a pleasant relief to find that a roomy handicapped-accessible family suite had been thoughtfully reserved for us.  Like a lot of life with growing and changing disabled kids, it will work for now!  Having the space that is appropriate for our needs makes all the difference!

 

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Warning:  Skip the next section if you prefer to avoid potty subjects!

 

***Right now, the hardest part of traveling with a growing Katie is taking her to the bathroom (including the itty-bitty airplane lavatory) when it’s not possible to utilize her adaptive potty.  It only works if I hold her in a squat position facing the back of the commode, sitting behind her, and it still takes about twenty minutes of holding her in this position.  (On her adaptive potty, she typically needs twice that much time.)  This arrangement is necessary any time we take her to a park or any other public place at home.  The toileting challenge is greatly increased if there’s no family restroom option provided, and the only handicapped-accessible stall is being used by an able-bodied person when there are plenty of regular stalls available.  [Just keeping it real and increasing awareness here, folks!]  It’s impossible to change the diaper of a large wiggly child like Katie in a typical restroom stall without fully exposing her to anyone who might walk past.  Not to mention there’s not enough clean space away from the toilet to do it hygienically for a child who reaches out to touch things.  Yes!  Yuck!***

 

Right now, Ben is much more challenging to travel with as an all-boy toddler who is not inclined to be quiet, still, or patient unless sleeping! 

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By next year, Katie will probably no longer fit into a port-a-crib, so that may be the next travel challenge to overcome, even when we head up to the cabin.  I should initiate a blog discussion about disability-related travel challenges, to pick some clever and experienced brains I know are out there!

 

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The second day, the three children and I took off on a charming riverboat tour.

Sorry my cell phone photos can’t be edited; riverboat is way down there over the edge of the bridge~

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Katie loving the wind in her face~

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The boat was propelled by a huge, old-fashioned wood and steel paddle, churning and kicking up spray handsomely in its gleaming red paint.

Why isn’t Katie looking at the paddle wheel?

If there are strangers around, Katie is always completely focused on their proximity and whether they will come closer to her.  However, toward the end of the week, I began to notice a valuable side benefit to this trip I hadn’t anticipated.  I’ll tell you about it on the way home.

 

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Once we were alone again, Katie was completely taken by the water droplets, the nearly overpowering noise, and the mesmerizing motion of the wheel.

 

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Ben was chilly in the breeze, so he snuggled up to me and ended up napping through most of the tour.

 

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Hey, let’s test the floatie rings tonight past the children’s usual bedtimes!  

Must thoroughly wear them out so they sleep well and don’t wake too early in the morning!

(It worked beautifully.)

 

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Every time Katie grew over-excited about what she was doing, she would hyper-extend her arms and legs and pull her legs forward until she was touching her toes.

 

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She thought she was in heaven!

 

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We spent our last full day at a nice little zoo, where I hardly took any photos, mostly because I want my children to be in the photos, and most of the animals were too far away.  Katie enjoyed looking at all the people, though.

 

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Katie truly loves all animals when they are close enough to her to register in her consciousness.

Another expressive Katie-face~ 

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I got this photo after a few minutes of “Look, Katie, look!  GIRAFFES!  The giraffes are EATING!  LOOK at the giraffes EATING!  LOOK, Katie!”

One-half and one-quarter of two giraffes~ 

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And this expression means…

“Uuuuuuuhhhh…do I want to be up here?  I’m thinking…no.”

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As if a whole day at the zoo and a stop for supper at a local outdoor café wasn’t enough…

Well, they still had excessive amounts of energy to burn, and our little plan worked last night!

 

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Tonight, Katie began putting her feet out behind her and kicking when reminded.

 

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Swim, swim, Katie!

 

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What a girl!  I’m so proud of you!

 

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Aaaaahhhhh~

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Peter was an excellent helper.  Was right there when he was needed.  Didn’t complain once.  I’m so glad he traveled with us and so glad he had lots of time to play as well!

 

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I had to psyche Ben into trying the floatie by pumping up the enthusiasm and keeping my face right in front of his.  “See?  I’m right here, holding onto you!  It’s so FUN!”

 

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By the time we began our journey home, I could see a new awareness dawning in Katie.

I realized that most of her social experiences lately have been with people who know her, call her by name, and pay specific attention to her.  School…church…company…

During this trip, she experienced the opposite extreme–large numbers of people who passed by her, minding their own business without noticing her or acknowledging her attempts to charm them.

 

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On the flights home, she even noticeably toned down her reactions to the flight attendants leaning toward us with smiles to ask if we wanted something to drink.  It was so good to see her picking up some social cues and responding appropriately.

 

Impressive progress that she sat through fully half her meal in this chair before growing restless~

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So now we know.  Katie is a relative breeze to travel with, wheelchair and all!  She is such a good girl, she did fabulously well with the challenges we ran into, and having her with us made the trip more fun!

We’re so proud of you, sweet girl!

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Small P.S.  If you ask Verity how old she is, she will answer, “I’m five!”  We arrived home two weeks ago, on her birthday, but celebrated it a few days later.

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Guest Post: I am moving to Bulgaria

July 8, 2015 at 10:38 PM by Susanna


NOTE from Susanna:  The following was written by Grace Kauk, the young woman who generously offered to come and live with our family as a helper without pay last spring, when we were in the thick of it with Tommy’s needs.  We joke now, somewhat ruefully, “we said ‘no’ to grace…”


When I received the following email, we were on our way to the airport, and I wasn’t able to read it aloud to Joe without choking up. 

Read on…

 

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Dearest Susanna,

Last spring, we considered my coming to live with your family, but God had other plans for us both. I’m writing now because I want to share something with you. You have been part of my story, and I want you to know how God is writing its next chapter. I hope that God will encourage you. You have been an encouragement to me.

Eleven years ago, a couple named Steve and Tanja Pankratz answered the call of God to be missionaries in Sofia, Bulgaria. Since only 1.9% of the Bulgarian population is evangelically Christian, the presence of missionaries may be the only way most Bulgarians will ever hear the gospel. The Pankratzes became involved in church planting, theological teaching, and creative outreach.

In 2009, their third child, Jaden, was born with Down Syndrome. Although there are extra challenges to raising a special needs child in Bulgaria because of societal stigma and lack of resources, Steve and Tanja did not leave the field. They stayed. In fact, they soon realized that not only was Jaden a profound blessing to their family, but God was using Jaden to open for them doors for ministry that they had never imagined, to the special needs families in Bulgaria who have chosen to keep their children instead of putting them in an orphanage. They are also beginning to open up doors for ministry inside some of the orphanages in Sofia.

Steve and Tanja want to keep walking this road alongside the Bulgarian special needs community. But as Jaden grows older, the lack of educational resources for special needs has left them with an acute need. Tanja writes, “We have felt a big vacuum and have found it difficult to juggle ministry, family, and homeschooling our older children when Jaden does not have someone to work with him. We have been praying that if God wills, he would send us … a teacher for Jaden to implement his neurodevelopmental program.”

When I heard this story, it resonated with me because I am a pastor’s kid and my younger sister, Mary, has Down syndrome. I remember what it was like for my parents to do ministry while homeschooling and while implementing Mary’s 3-4 hr/day neurodevelopmental program. Galatians 6:10 tells me to serve everyone, but “especially those who are of the household of faith.” God has been gracious to be very clear in his leading to me. It is my joy and privilege to come alongside Steve and Tanja in the work they’re doing by meeting their need for Jaden, and to participate in their ministry to the special needs community in Bulgaria. I hope to leave in September (in order to arrive for the beginning of the school year) and serve Jaden and his parents for at least one year, after which we will see how God leads.

May I invite you to join me in this, if God stirs your heart to do so? By the end of August, I need to raise monthly support of about $1500/month. That is not a lot of time to raise support! I am asking my Christian community to consider supporting me in three ways.

Would you be willing to receive my newsletter and pray for me? Pray that I will navigate this process of raising support without doing damage to any relationships. Pray that God who has called me to this work will supply my needs. Pray for me as I take time to seek God and prepare my heart before I leave.

Would you pray about supporting me financially on a monthly basis? Here is my online page at SEND International: Grace Kauk

Please give only as you purpose in your own heart, only if God is prompting you to do so. There is no burden or compulsion here. Since God has called me to this work, it is up to Him to call those He would have to support me.

Would you pray about sharing my need with others you know?

I almost did not write these final paragraphs. You are dear to me, and I truly am happy for you to just know how God has continued our story. I don’t want to burden you in any way. You are ALREADY a part of this ministry, since you are part of my story and part of Bulgaria’s story. But I felt it was right to give you the same invitation I am giving others, and let the Holy Spirit decide whether he would lead you to say yes or no at this time. Please know that I am content just to share with you what God is doing, and I expect nothing from you.

Love, your sister,

Grace Kauk