Lessons from the Waiting Room

As I write this, I’m sitting in the outpatient surgery waiting room at Rainbow Babies and Childrens Hospital. Annie is having her wisdom teeth removed today. It’s really a no-big-deal procedure that will result in some swelling and discomfort. I predict a lot of milkshakes and jello in her near future.

As I glance around the room, I’m so impressed with the obvious planning that went into this space. Televisions are well-placed and the chairs are quite comfortable (they’re gliders, so I’m happily rocking while I blog!) Above me is a lighted image of the earth taken from outer space. In the adjacent room, computer games are installed on wall computers for young patients to enjoy. The bathroom is accessible and lockers are provided to store belongings under lock and key. The hospital staff, architects and interior designers worked together beautifully to make this a comfortable, inviting space.

However, none of the “stuff” replaces the kind of care we have received. The parking attendant greeted us with a smile.The receptionist we met this morning was pleasant and helpful. The admissions secretary led us up to the surgery center so we wouldn’t get lost. The nurses and doctors weren’t in a hurry, and, with kind smiles and patient eyes, answered all of our questions.

In short…it was a medical procedure wrapped in a thick, comfy blanket of hospitality.

So, what can the church learn from the waiting room?

  • Ministry begins as soon as the mini vans turn into the parking lot, and parking attendants are the church’s “first face.” Be certain that those who are serving in this capacity know that in addition to ensuring safety, they are promoting hospitality as well.
  • Be certain that your ministry area is comfortable, clean, and appropriately lit.
  • Purchase or create signage that helps newcomers to know where to go.
  • Greeters should be on the lookout for visitors and anticipate their questions and needs.
  • Provide activities for children to enjoy while they’re waiting for class to begin (this lessens anxiety and prevents behavior problems.)
  • Good care ALWAYS trumps good “stuff.” Don’t worry if you can’t afford fancy computers, the latest sound system or the nicest furniture. The Church is NOT about pretty things.The “wow” factor that a slick, exciting space evokes is short-lived; the care provided by humble, loving staff and volunteers is lasting. THAT is what builds the Kingdom!

Hospitably yours~

Messages from Moms: Gillian Marchenko

Happy Monday, everyone!
You are in for a treat today…I’m going to introduce you to another fabulous lady who loves God and loves her kids…and has much wisdom to share with all of us.

I met Gillian Marchenko through our mutual friend, Shannon Dingle. I instantly felt a connection to Gillian…we both have daughters who share a rare diagnosis. I have thoroughly enjoyed getting to know Gillian through her writing and her always-honest facebook posts (which have me laughing and crying in equal measure!)

Today, Gillian answers a couple of questions about faith, family, and special needs:

Tell me a little bit about your children.

My husband Sergei and I parent four daughters: Elaina (11), Zoya (10), Polly (6), and Evangeline (5). Elaina is a voracious reader. Zoya likes science and math. Polly thinks she dances better than Angelina Ballerina, and Evangeline loves the swings at the park. Our kids are best friends. They make forts in the living room, and play Barbies. They all still try to cram into the bathtub before I catch them. “We fit, Mom. See, we all fit.”

 How does having children with special needs affect your family?

 Polly and Evangeline have Down syndrome. (Evangeline was adopted from Ukraine in 2009.)

Family life is busy: homework, laundry, therapy, fun Saturdays, work, church, walking the dog. I eat disability. It is clothing I wear. It wafts through my lungs every day, and yet, I forget about it because I am busy living. To us, Polly and Evangeline aren’t disabled. They are simply Polly and Evangeline.

But then I take a step back.

Not every family has weekly therapy and doctor appointments. Most five-year-olds are potty-trained. Families probably don’t plan Saturday activities around crowds, and noise, and chaos. We face these issues because our family is affected by special needs.

Having children with special needs affects our family positively too. Our children are raised with a sensitivity to those around them. Special needs slows down our lives. We celebrate everything at our house. A good grade on a test is a call to cheer. A kid meets a new therapy goal, you can be sure our gang is stoked. And we meet all kinds of wonderful people we probably, to be honest, wouldn’t have made time fore if it weren’t for Polly and Evangeline.

How has it affected your faith?

I want to be careful answering this question. It is easy to provide platitudes about the fearless mother and faithful child of God who clung to Jesus when she had a child with Down syndrome. A lot of people want to hear that from a pastor’s wife and former missionary. They are looking for encouragement. People of faith want to read about others who have persevered, fought the good fight, stayed true to their belief.

 I would have liked to behave better after Polly’s birth, to smile and pray and trust God in all things like the Bible teaches.  I would have liked to have remembered that children are a gift from God.  It’s what people in my circles would expect from me.  But in my humanity and grief, it didn’t happen. 

The truth is my faith nearly buckled with my daughter’s birth. I stopped praying. I struggled to love my family. My heart was pulverized like a piece of meat. It was six months of straight sucker punches to the gut.

One of the things I love about God is that he doesn’t let me get away with something for too long.  I am a toddler and he is the loving parent, pulling me back into the playpen at the exact time I’m about to fall over the edge.  My broken heart started to heal through the love of my child, and through a reconciliation with God regarding the purpose of my life.

Two of the biggest lessons God is teaching me as a parent to children with special needs are 1) life isn’t easy, and 2) God wants us to draw near to him.

Psalm 84:3 helps rebuild my heart.

Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young— a place near your altar, LORD Almighty, my King and my God.”

Sparrows are friendly birds.  If a sparrow were on a housetop, it would be surrounded by half a dozen of its kind.  It is the most unusual thing in the world for a sparrow to sit alone.  It only happens when the bird’s mate has been killed or its nest and young have been destroyed.  In Psalm 84 the broken sparrow finds a home near God.  As I thought more about the sparrow and the swallow raising their young at a place near the altar of God, I kept thinking that God wanted me to gather up my family and move closer to him. 

That’s what I try to do. Some days I am successful. Other days, I’m not.

Gillian Marchenko is a Christian, wife, mother, writer, speaker, and advocate for individuals with special needs. She writes and speaks about parenting kids with Down syndrome, faith, imperfection, and adoption. Gillian’s work has appeared in MomSense Magazine, EFCA TODAY, Four Cornered Universe, CHICAGO PARENT, Story Bleed, and CHICAGO SPECIAL PARENT. Check out Gillian’s website at www.gillianmarchenko.com or find her at www.facebook.com/GillianMarchenkoPage or on Twitter, @GillianMarchenk.

Additional note from Katie: Please visit Gillian’s facebook page and click “Like;” she has written a book and is hoping to have it published…we want that to happen! By clicking “like,” you’ll let publishers know you’d like to read her book! 🙂

Messages from Moms: Ellen Stumbo {part 2}

I hope you all had a wonderful weekend! (I, personally, am glad to return to my routine; I find Memorial Day weekend e-x-h-a-u-s-t-i-n-g!! It was great fun to watch our kids march in two parades, though, and most importantly, a humbling opportunity to honor the brave men and women who have kept us safe.)

Today we return to our conversation with Ellen Stumbo. Ellen is a devoted Christian, and she is married to a pastor. She beautifully describes how their church rallied around them after their daughter’s birth, and continued to care for them as they discovered a calling to expand their family…

Looking back, I am thankful for a church family that celebrated the birth of our daughter. The women that held Nichole and awed over how beautiful she was.  I am thankful for the friend who took me to my husband’s office the first time I came to church after Nichole was born. She was the mother of an older girl with Down syndrome, and she gave me room to express my feelings and question why God would give me such a baby. She would show up at my house and tell me she was there just to hold my baby so I could spent time with Ellie or take a nap.  I am thankful for close friends who showed up at our door the day we received the genetic testing that confirmed the diagnosis of Down syndrome. Their 2-year-old daughter running to me to give me a hug, the little girl I had watched for a year so her mommy could take a part-time job, and a little girl who also shared a Down syndrome diagnosis. I am thankful for the “grandparents” that did not look at Nichole as different, but one more “adoptive” grandchild to love and to care for. Thankful for the sweet friends who watched my girls every week so I could still help with youth group, and the husband who would wear his yellow fleece sweater, “because Nichole likes how soft it is and she sleeps so soundly on my chest.” The family that would volunteer to spend time with the girls and how convinced they were every family should have a member with Down syndrome, and thankfully they had Nichole, their son promising to always watch out for her like a big brother. A friend who provided respite care and was available for me too, offering one of the most valuable friendships I have had. In our church Nichole was not defined by her diagnosis, she was simply Nichole. When we decided to adopt another child with special needs, the same church family rallied behind us, they helped us get Nina home. They were beautiful, so beautiful. The body of Christ loving on our family.

I never wanted to be the mother of a child with special needs. Now, the mother of 3 girls and 2 with special needs, I cannot imagine my life any other way. Sure there are times when things are difficult, and our battles might be a little different. But the joy and love that surround us has surpassed any dreams I ever had. We recognize even the smallest of accomplishments and we celebrate unashamedly. We clap, we jump, we cry with joy.

We are a part of something bigger than ourselves. Of men, women, children, and families that defy all odds and inspire me beyond what words can describe. A special needs community that I consider a privilege to be a part of. Having children with disabilities is not a burden, for me, it is an honor.

And Ellen…it is an honor for us to read your words! Thank you.