Category Archives: Special Needs

Winner for Sun Shine Down

Congratulations, Amy Sterk! You won the drawing for Gillian Marchenko’s memoir, Sun Shine Down.

The rest of you can find her book here! Thanks so much for participating!

sunshinedown

A reminder of brokenness — Guest post by Gillian Marchenko (and book giveaway!)

I’m delighted to welcome Gillian Marchenko as a guest blogger today!

Whether your life has been touched by a child with special needs or whether you’re simply struggling to accept the gift of brokenness God has given you, you will be blessed and moved by Gillian’s memoir.

Enter to win a copy of Sun Shine Down, the story of Gillian’s daughter Polly, by doing any of the following, then leaving a comment to let me know what you did:

  1. Like Gillian’s facebook page.
  2. Subscribe to Gillian’s blog.
  3. Like my facebook page.
  4. Subscribe to my blog (click “follow” to the right).
  5. Leave a word of encouragement for Gillian below.
  6. (Less conventional, more helpful) Stop for a second and pray for Gillian and her family as she has three speaking engagements this week, including the National MOPS convention this weekend.

The winner’s name will be randomly drawn and announced tomorrow morning.

Now join me as Gillian remembers the importance of brokenness in her life…

 

It’s supposed to rain later today.

My left arm aches.

I broke it in two places, two different times in my childhood, and now sometimes when the weather changes it aches, either up near my shoulder or in my wrist; the places it broke.

The aches remind me of those times; the agony and pain, the fear of being in an emergency room as a child, spending the night for the first time in a hospital, getting attention from classmates and extended family, people signing my cast, ‘Get well soon!’. Me trying to itch the inside of my cast with a hanger, not being able to swim for half of a summer because I couldn’t get my arm wet. Being a bit doped up on the medication to ease the hurt.

My broken arm became my whole world. How could it not be when the pain was great, instant, and overwhelming?

At the time there was no way of knowing that the pain wasn’t going to be my new normal.

For all I knew I could be in that kind of fear and pain for the rest of my life.

I went to the hospital and got help. The excruciating pain eventually turned into a dull ache and then only, a flimsy itch.

Life went back to normal. I was found splashing around in the kiddie pool within eight weeks.

But a dull ache returns now and then.

And I am reminded that at times in my life, I’ve been broken.

Recently I went to four parent-teacher conferences for my kids in two different schools.

I was prepared to discuss each kid, I thought. But when I sat down with Polly’s teacher (who has Down syndrome and stars in my recently published memoir, Sun Shine Down), I was surprised to read that she hadn’t met her goals. After a whole year at school Polly still couldn’t figure out classroom procedures. She struggled with transitions every day.

Polly was cute and everyone loved her, but basically she was still just walking around making messes in class.

And the dull ache, the fact that I had a child with a disability started up again.

Polly’s birth shattered me. I teamed up with Jesus and my husband Sergei to put myself back together, but much like that pesky jigsaw puzzle you’ve almost completed, a few pieces were lost in the mix, and now I walk around with empty spaces.

Most of the time the spaces are used for good.

I have more compassion for others.

I understand grace better.

I relate to others through my brokenness.

And sometimes it feels right.

But there are other times when it still breaks my heart that Polly is behind her peers.

I am OK with Down syndrome.

But there will always be days in my life where the rain will come.

And because I’ve been broken, I will ache sometimes.

It doesn’t mean I love my kids less or that I wish my life was different.

It just aches.

And that’s OK, I think.

Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down, a memoir, published with T. S. Poetry Press in the fall of 2013. She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record. Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.

Buy Sun Shine Down on Amazon, Kindle, or Nook

Follow Gillian and her family at www.gillianmarchenko.com, on Facebook, Twitter, and Pinterest

When we’re waiting for the bus

editedschoolbusstop

Ever feel like you’re in Dr. Seuss’s book, Oh the Places You’ll Go… but not exactly on the last page where things finally come together?

Somehow I think we’re all a little more familiar with the “slump” page, the “alone” page, and especially the “waiting” page.

My dear fourteen-year-old special-needs son was on the waiting page last week.

Upon starting his new school (which is amazing) on Monday, we were informed that bus service would begin Friday.

Due to Jaden’s obsession with buses (think bus = Disneyworld), it was a long week.

Thursday was spent informing every friend, foe, and stranger — ten times each — that Jaden would be riding a bus the next morning. Those discussions, of course, were followed by countless fist pounds — Jaden’s favorite expression of celebration.

We greeted Friday morning with joy and relief, rushing through morning preparations in order to be on time at the rendezvous point.

Jaden high-fived, fist-pounded, giggled with anticipation, and kept an eagle-eye on every vehicle entering the neighborhood. Even Jaden’s ears were on high alert. They perked up at the rumble of every bus engine within a one-mile radius.

Ten minutes passed and though no bus had appeared, spirits were still high. Jaden continued to pace and chat excitedly.

Twenty minutes passed and my patient (slightly more sober) son continued to keep watch.

Thirty minutes later a little reassurance from mom was necessary. “It’ll come, it’ll come… but maybe I should call the school to make sure.”

After forty-five minutes, both Jaden and I slumped onto the curb, not at all sure the bus dream would come true today.

There had been a glitch. Obviously. Another call confirmed the bus would not be coming that morning. So I drove him to school… where apologies abounded!

My boy had my sympathy. The truth was, I knew all too well how he felt. How often I’ve waited, full of hopes and dreams, only to crumple in disappointment when expectations weren’t met on my time table.

I wish I could say I’ve always responded with the same grace he showed that morning. I fully expected some kind of angry outburst; but, upon delivering him to school and being assured that he would have a bus ride home that afternoon, I saw sunshine and faith return.

We all take our turns in the waiting room (or at the bus stop) though, don’t we?

Waiting for a train to go
Or a bus to come, or a plane to go
Or the mail to come, or the rain to go
Or the phone to ring, or the snow to snow
Or waiting around for a Yes or No
Or waiting for their hair to grow.

Sure, sometimes waiting is about procrastination, fear, or laziness. And maybe that’s what Dr. Seuss is talking about above in Oh the Places You’ll Go. But sometimes, it’s just a huge, necessary part of life, whether we like it or not.

In fact, I’m finding that God’s work is best done in the waiting period. It’s in that awful in-between place that we are the most desperate for Him.

waitquietly

I am so tempted to slump on the curb or throw a tantrum when the bus doesn’t show up. I did quite a bit of that as Jarod and I waited nine years for an answer to prayer. I’ve done far too much of that even after seeing how very trustworthy my God is.

And so the lessons continue. I will wait for the bus again. I’ll be unsure, helpless, and in suspense. But that’s not at all bad for me.

Not if I hand it all over to Him again.

Not when I remember that there are no glitches with God.

He won’t leave me at the bus stop one minute longer than He wants me there.

waitontheLord

Not by might, nor by power: An answered prayer

I “fought” on behalf of my special needs child for a few weeks.

I attended the meeting that was intended to resolve the issue.

And I walked away defeated.

I’d given it my all… presenting what I thought were strong arguments and valid points, yet I was presented with three unsatisfactory options:

  1. Yield.
  2. Muster up the energy to present my case to a superior again.
  3. Hire a lawyer.

It was up to me to make the next move.

So I procrastinated.

The next morning — my “deadline” — came and went. Jarod and I had been praying for weeks and I was still praying. But I was not seeing an answer, so how could I make the call they were waiting for?

And then the phone rang.

“God, I know it’s them. I have to answer, but I don’t know what to say!”

But He knew that.

They were calling to give me the answer; they’d concluded I was right.

It was done!

I puzzled over how things had changed. Later, I found out that others had stepped up to speak on my behalf.

God knew I was spent.

I’d felt it was all on my shoulders, but the truth was, it was in God’s hands all along.

He had it.

And once again when my strength and wisdom were gone, when I was weak and done, He showed me He could handle it.

bymySpirit

Lord Jesus, let this example of your faithfulness remind my friends and remind me to trust you for the next thing.

Choosing my special child

choosingmyspecialchild

I’ve blogged about my son Jaden before. Actually, I could probably write a pretty interesting story about him every day.

Oh yes… when we chose our dear boy, we had no idea how many scares we would have, nor how many scars he would someday have.

Thanks to his special needs and fearless nature, this child would eventually fall off a roof, drink gasoline, and endure a hundred (provoked) wasp stings. He would do his best to ensure I never received a “mother-of-the-year” award. (What kind of mom lets her child do those things?) Having him would mean trouble finding a babysitter, seizures in the middle of church, lots of stares in public, and far too many doctor visits.

Join me at Gillian Marchenko’s blog today for the rest of this article:

Choosing My Special Child

Seeing the gifts in special needs

OLYMPUS DIGITAL CAMERAHow has a special needs child or adult

come into your life?

For most of us, it’s not by choice.

For some it’s the prenatal discovery of an extra chromosome, for others the shocking diagnosis of a child’s autism.

A few have watched a tragic accident transform their loved one, while others have encountered unexpected issues after adopting.

Some are simply trying to relate to the non-verbal child in Sunday school or the wheel-chair-bound neighbor next-door.

Whatever your situation, it’s not easy. It’s a whole new world.

Like most people, I did not walk into this world on purpose. I would never have picked myself as the right mom for a child with special needs. But God knew I needed to be that mom.

When we chose to adopt our twins from Haiti, the only knowledge we had was second-hand. We saw our normal-looking boys pictured online, learned as much as we could about them, and after bathing the decision in prayer, decided to make them a part of our family. We had no idea what we were getting ourselves into.

It was adoption and we had a choice once we knew — yes, but even when we technically could have backed out, God confirmed in our hearts that it was in reality His choice for us.

In the dark heat, only hours after entering the country that first time in 2001, we were introduced to our sons. Justin seemed mortified to meet us. In a photo of that incredible moment, I was the picture of joy and he of abject misery. But his only issue was shyness. As for Jaden, well, Jaden gave the phrase “out of control” deep new meaning. We had known he had a lazy eye, but we hadn’t known about his crippled left arm, nor — slightly more significantly — his special needs. After he’d been in Jarod’s arms for an entire two seconds, we knew we were destined for exhaustion. If I’d ever met a child whose behavior could accurately be compared to the infamous “Taz” of the Looney Tunes world, this was he.

(From Chapter 1 of In a Sun-Scorched Land, my memoir-in-progress)

Jaden, now 14, has a degree of autism, cerebral palsy, regular seizures, and severe developmental delays, due to brain damage from a traumatic birth.

Jarod and I have had to answer a lot of questions from the rest of our kids about why God allowed Jaden to be born with all of these problems.

I don’t know why.

I do know that because of sin, our world is broken. Life isn’t what it was originally meant to be.

When I see another seizure start — when Jaden topples like a tree, scrapes his head and elbows yet again, and then returns to “normal,” to utter the same phrase he’s repeated all week, “Wagon pretty!,” my heart hurts for him.

I long for the day on the other side of eternity that his pain and limitations will be shaken off for good.Jaden

But…

But, I also am deeply grateful for the beauty that God brings out of brokenness in special needs children and friends.

I love dropping Jaden off at his middle school and being greeted by the other kids that belong in his “Exceptional Students” class.

One girl hugs me as if I’m her long-lost mother.

A tall, handsome boy, to whom I’ve never been introduced, waves and smiles like we’ve been best friends forever.

And the dark-haired boy with peach fuzz on his upper lip lights up and bellows, “Hi Jaden’s mom!”

When I leave them, I walk past all the “normal” students far too absorbed in their iPhones and friends to give me a second glance or a smile.

It is the ESE kids that leave me full of joy and life.

Their exuberance and love are gifts from God, reflections of His own nature.

They bring my attention back to what’s real; what truly matters.

Jaden forces us to slow down and enjoy the little things.

When dirty dishes line the kitchen counter and there are about thirty-seven things left on my to-do list in the two hours before bedtime, Jaden asks me to ride bike with him. Watching the sunset as we pedal along reminds me that a quality life is not defined by a completed list.

When he gleefully hands his plastic piggy bank to the cashier at Walgreens to pay for his baby toy, I see her heart melt a little, and I know the people standing in line behind us are forced to think about life a little differently.

Of course one of the most beautiful things Jaden does is help the rest of us to become less selfish, more Christ-like.

We’re called on countless times each day to pause our “important task” and give Jaden yet another high-five or fist pound. We are learning to build him up by cheering him on each night when he sings his bedtime song. We let him pull us by the hand to see the prized toy displayed on his unmade bed and act like it’s the most incredible thing we ever saw, even though he showed it to us five minutes ago.

Don’t get me wrong, we’ve rolled our eyes, groaned, and giggled plenty over the years at his obsessions and demands. How deeply I regret my frustrated sighs that he has taken to mimicking!

But as Jaden himself has matured, and become quite a bit less chaotic than the “Taz” he used to be, we too have been shaped and refined by him.

Jaden is a gift.

Boys

Special needs are not easy to deal with. But they are a gift.

Receive God’s gift to you, in whatever form, with an open heart and be ready for the blessings to pour out.

_____

I’d like to dedicate this blog to my precious neighbors who are raising their three autistic children with the grace and joy of Jesus. You are a blessing to all who know you.

_____

*If you are on the sidelines, watching a friend raise a special needs child, here is a great article by Gillian Marchenko: 10 Special Needs of Special Needs Parents
For further encouragement, visit Gillian Marchenko’s website: gillianmarchenko.com

 

%d bloggers like this: