Gillian Marchenko's Blog, page 6

That one time I turned the wrong way, drove 20 miles, and missed my daughter’s band concert

That one time I turned the wrong way, drove 20 miles, and missed my daughter’s band concert

I was encouraged to share a ‘bad mom’ moment.

Here’s a doozie:

Zoya, my second daughter, participated in her school band in the fifth grade. She chose to play the trumpet which thrilled me, having been a trumpeter myself in my youth. I located my instrument from high school and cleaned it up for her use. The class started. She learned how to read music. Before long we heard amazing hits such as “Three Blind Mice” nightly. It was either that or a fog horn? Either way, I couldn’t wait for her first band concert.

The day arrived… and I was depressed because I am a mother who fights depression and well, that just happens sometimes.

But I wanted to be there for my daughter so I took a shower, put on jeans and a shirt, and situated myself in the driver’s seat to go to the concert. We had more than enough time and simple directions. I did not have a GPS or the knowledge that I could easily get a GPS on my phone (don’t laugh! This was a couple of years ago, and yes, after the incident I started to use GPS), but I had the address and directions written out on a piece of paper. It was simple, really. Just two turns. Fool proof.

So off we went. Zoya, her trumpet, and me singing along to the radio while I secretly swabbed my sweaty face with a balled up Kleenex. Twenty minutes later we were still driving. I got nervous. We had to have been close to our destination. Or did we miss it? It wasn’t supposed to be this far away. We drove deeper into the south side of Chicago and I started to shake.

“Mom, are we almost there? We’re going to be late.” Zoya sat shot-gun. Her face moved from mild amusement towards a worried expression.

“Let me call Papa and ask him,” I tried to say nonchalantly. I’m sure my voice came out shrill and pinched.

My husband broke the news when I called.

“Gillie, you turned the wrong way on Western. They concert is the other way, across town. You should have turned right. You turned left.”

I looked at the clock on the dash. Warm-ups for Zoya’s band were to start any minute at the concert. We were at least thirty minutes away. We were going to miss it.

“Zoya, I turned the wrong way,” I whispered as I pulled the car over to change directions. “I’ll drive as fast as I can. Maybe you’ll make it for the actual show.”

My daughter started to cry. I apologized profusely. The trumpet sat in the backseat. An inanimate object that was going to stay inanimate. I couldn’t believe my mistake. I wanted to be inanimate too.

We drove in the direction of the concert and watched the minutes tick by. By now the band would be playing “Are you sleeping brother John?” and other songs.

We definitely were missing Zoya’s first band concert. I joined in on the crying.

Sometimes parenting feels like a lot of wrong turns

And in the Christian circles I run in, there is a lot of pressure to have well-adjusted kids who make all the right choices in life, who figuratively wear the ‘WWJD‘ bracelet at all times, who never rebel, and accept Jesus at an early age. Sometimes, my husband’s job (he’s a pastor) makes expectations even greater. (I’ve tried to talk him in to becoming a tire salesman for God to no avail.)

So we hope for, and work toward, and pray for the kind of children people expect us to have. But what if it doesn’t happen?

Just like I made a wrong turn for Zoya’s band concert, people make wrong turns in life. Our children aren’t exempt from that, even though we hope and pray they will be.

It’s time we start talking about the underbelly of parenting. Our kids aren’t perfect. Sometimes they choose to sleep with their boyfriends before marriage. Sometimes they run from God. Sometimes they decide they don’t believe in God.

Parents aren’t perfect. Pastor’s families definitely aren’t perfect (news flash: we are the same as everyone else with one pathetic exception: we usually have farther to fall.) We push too hard, or lose sight of the fact that God loves our children immeasurably more than we can fathom.

I need some help here!

My friend Kathi Lipp has a new book out called I need some help here! Hope for when your kids don’t go according to plan.

As soon as I saw the title, I had to read it. As a special needs mom, I know first hand that things ‘don’t go according to plan.’ But as my two older girls grow into adulthood (hello adolescence!), I’m feeling this struggle. I want so badly for them to trust God. I want them to want to honor him with what they do. And for the most part, they are. They do. But, here’s the thing… It’s not guaranteed. They are their own people. I know too much about life to assume they will do everything ‘according to plan.’ Here’s the back cover of Kathi’s book:

It’s easy to feel worried and anxious as a parent. There are so many areas of your child’s life that can go wrong along the way. What’s a mom to do? In I Need Some Help Here! Hope for When Your Kids Don’t Go According to Plan, Kathi meets you in your moments of panic or despair with wit and wisdom. She offers the most powerful tools, from prayer to practical tips, for you and your child. The book covers all of the stages of your child’s life from toddler to young adult and tackles the most common issues that cause stress and anxiety. Whether you are at the end of your rope, or simply need a little extra support as you walk the parenting road, you’ll cherish Kathi’s heart, humor and experience.

This was a good read. Scripture was peppered throughout. Prayers ended each chapter. I found practical tips to grab on to and implement right away. Stories ‘from the trenches’ helped me see that there are moms who have been there, and reassured me that others are ‘there’ right now.

What is your family dealing with today? Poor choices? Bullying at school? Depression?

Let me tell you what Kathi says in the book. It is okay if your children aren’t perfect. You don’t have to hide it or cover it up.

You and your kids are going to make wrong turns in your parent/child dance. ‘I need some help here!’ talks a lot about remembering who is really in control.

God loves our children more than we do.

Every day I find myself at a loss on how to help maneuver their ascension into adulthood. ‘I need some help here!’ left me buoyed as a mom, encouraged as a believer, and hopeful as a lover of my kids.

The pages of this book are sure to be worn out soon.

So, what happened with Zoya’s band concert?

We missed it. We missed it by a long shot. I looked over at my sweet girl as we zoomed across town. She was staring out the window and wiping tears from her cheeks.

“Zoya, I’m sorry. I really screwed up. And I am disappointed too. I couldn’t wait to see you play your trumpet on stage. Tell you what… It’s not a band concert, but how about we catch a movie?”

Zoya’s face brightened as I turned into the parking lot of our neighborhood theater.

That night she got popcorn and pop and candy. Was it great parenting? Who knows? And really, who cares? We hung out in the arcade afterward. I gave her quarters and watched her feed the machines. We giggled as the Pacman ate the dots. We high-fived when she got high score on another game.

I hugged her and tried to remember the moment and the day, even though it was painful and embarrassing.

Because I think I would rather remember then forget. And I know a lot more wrong turns are in our future. That’s just life.

The other day Zoya and I drove by the theater.

“Hey mom, remember when we missed my first band concert and went to a movie?” she asked.

“Yeah, I remember,” I replied while pulling the car up to a stop sign.

“Even though we took a wrong turn, it ended up being a pretty great day.”

You might also like: 10 things not to say to a mother fighting depression Depressed mom = failed mom A glimpse at a mother’s depression 6 things a mom struggling with depression can do to start the day off better The color system for motherhood and depressionZemanta

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Writing a book, one author’s process

Writing a book, one author’s process

I’ve been tagged by my friend Isaac James Baker, author of brilliant new novel Broken Bones about a twenty-something man’s month long stay in a psych ward for an eating disorder (go buy it now… I’ll wait), to participate in a #MyWritingProcess blog hop. Writers are asked four questions about their process and then they tag a couple of their friends. It’s a writing process revolution! Writing a book. Maybe everyone will do it?

This challenge couldn’t have come at a better time. I am deep in the process of writing a book, my second, which has eclipsed everything else in my life. I’m mom to four girls. The laundry is piled up. The bathroom smells. The kids are whinny because of the lack of attention. Business as usual around here when mom is caught up in writing.

Anyway, thanks Isaac, for the tag.

Q: What am I working on?

My second book is a memoir about depression, faith, and motherhood. Yep, I’ve written about special needs parenting, and now I am writing a book about depression. Party of one over here. I’m not a downer, though. Honest! Let’s just call me deep. Shall we?

The depression memoir was sold on proposal to InterVarsity Press. I’ve decided there is no way I can write this book. I can’t write at all, actually. I are a writer. See? But I am pushing ahead because I love to write and we already spent the advance on braces and vacation, and because there is a stigma about mental illness in our churches and communities.

My deadline is in the fall. I currently have about 40,000 words written. Glennon Melton Doyle wrote on Facebook that she has six words down for her second book, and three of them are her name. Oh, Glennon, I hear you! My issues are that the words don’t belong in the manuscript or they are poorly written.

Edna St. Vincent Millay said that a person who publishes a book willfully appears before the populace with his pants down.

Writing is vulnerable.

But nobody writes wonderful first drafts (if they do, I am going to avoid them and refuse to read their work on principle). Rewriting is key. I’m attempting to ignore self-sabotage and doubt.

Q: How does my work differ from others of its genre?

I’ve found a handful of books that deal with depression and faith and hardly any (if any?) that throw in motherhood as well. And most of the books are straight non-fiction borderline ‘how to’ books. My book (God willing) will be more narrative and true to memoir form. It will tell a story, my story, and hopefully within that encourage others who suffer in silence and provide spiritual and practical ways a person can fight depression.

Q: Why do I write what I do?

I stumbled into writing memoir. When my daughter Polly was born with Down syndrome, I wrote through the pain and it turned into a book.

Also, my love of memoir probably stems from my childhood. When I was a little girl I would sit on a bench at the mall with my grandpa and people watch. My grandpa had a comment about everyone who passed and usually it wasn’t politically correct or nice. “Look at the rear on that one.” Or “slow down, buster, you’re not that important!” While snickering I learned the art of observation.

I still observe (although I try not to say or think mean things). One of the ways I make sense of life is through the written word. E.M Forster said “How do I know what I think until I see what I say?”

Q: How does my writing process work?

I lurch around in the dark, type words, peel back memories and scenes from the past, and try to find something salvageable. Writing a book is like doing a puzzle. I don’t have a ton of advice, but here are some concrete things I do.

-I prepare. I read a chapter from a book I love. I pray about my writing.

-I write. I try to find several hours in a row to think and write. This works out well for me because my kids are all school aged and are gone during the day. I shoot for 1000 words or two hours editing. I spend a lot of time looking off into space too.

-I get the first draft down. I wrote the first draft of Sun Shine Down and then hired a professional editor. I printed out her suggestions, sat down to the blank page, and re-typed the whole thing. This tip was from wonderful author and writing coach Kate Hopper.

-I purchased Scrivener. I recommend this program for writers. I like the cork board feature. It helps me see the big picture of my book.

-I use on-line restrictions. I found an app that blocks social media for 25 minutes and then gives you 5 minutes to check email or get up before returning to the work.

-I try to ignore negativity. I talk to other writers and attend a monthly writing group. I read good books to remind me why I write and help me hone the craft.

The second half of Millay’s quote is “If it is a good book nothing can hurt him. If it is a bad book nothing can help him.”

There’s nothing like a good book.

So, there you have it… a little peek into the process of writing a book.

I’m tagging two fantastic writer friends: Annette Gendler and Jen Pollock Michel. Annette was my writing instructor for advanced memoir at StoryStudio in Chicago. I’ve just recently gotten to know Jen and look forward to her book that publishes in July. Thanks for participating ladies!

 

Annette Gendler writes literary nonfiction. Her work has been published in the Wall Street Journal, Tablet Magazine, Natural Bridge, Bellevue Literary Review, Under the Sun, and the South Look Review, among others. Her website is AnnetteGendler.com.

 

 

 

Jen Pollock Michel is a regular contributor for Christianity Today’s Her.meneutics and writes for Today in the Word, a devotional published by The Moody Bible Institute. In July 2014, Jen is publishing her first book, Teach us to Want: Longing, Ambition and the Life of Faith, with InterVarsity Press. You can follow Jen on Twitter@jenpmichel or you can find her at jenpollockmichel.com.

You might also like: How my agent found me Advice to a mom who wants to start writing The Next Big Thing Writer Blog Hop Telling the whole truth; trading ugly for glory A place in the publishing world for my book about Down syndrome?Zemanta

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Share a picture of Sun Shine Down and win!

Share a picture of Sun Shine Down and win!

If you own a copy of my book, snap a picture and share it on my Facebook author page. You could win a Skype call with Polly and me, or a $25 Amazon gift card, or a journal and stationery set. Join in! The giveaway goes until 5/26/14. Polly and I are so thankful to all of you who have grabbed a copy of our story.

You might also like: The big cover reveal for “Sun Shine Down” Memoir holiday gift… Order yours today Goodreads Sun Shine Down giveaway! Sun Shine Down is out in the world. What now? Sun Shine Down Happenings: some places you’ll find me this week…Zemanta

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The importance of sunny soccer Saturdays in a special needs life

The importance of sunny soccer Saturdays in a special needs life

A few Saturdays ago, Sergei and I took Polly and Evangeline, our two daughters with special needs (Polly has Down syndrome and Moyamoya, Evie has autism and Down syndrome) to play soccer in an AYSO program built for families affected by disability here in Chicago.

A friend from the girls’ school told us about it. “Just sign up. It’s great. It is an hour by the lake front and each child playing has a buddy or two to help them. Our family has been doing it for a couple of years. You’ll love it.”

When registration opened, I took a deep breath and signed up my kids.

Can I be honest?

I didn’t want to sign up the girls because I knew that even with buddies it would be challenging. Evangeline eats non-food items constantly, and seems to have an affinity for grass and dirt which would be a plenty in a soccer field. Polly has a tendency to run off and not listen. And my husband Sergei and I are exhausted from therapy appointments, doctor visits, and a general quest to keep the girls happy and safe.

But I knew we needed to sign up for soccer.

Because we’ve let our family life get small.

Living small with special needs

When it comes to special needs, and I think other families know what I am talking about, it is way too easy to let our lives become small. I’m talking about small regarding new places to visit and new experiences. It is easier to stick to controlled environments, to places and situations where our whole family feels comfortable.

It isn’t horrible in and of itself, except when you find yourself spending most of your time in your living room.

So we signed up and went.

And it was terrible.

Polly was so excited when we got there that she immediately peed her pants. We let her run around the field with a dark imprint of her butt and legs on her purple sweats before changing her in the mini-van. Evangeline spent the hour bent over like a jack-knife stuffing fistfuls of dirt and grass in her mouth. Two buddies were assigned to her, sweet teen-age girls who had no clue how to get this kid to stand up and walk. Sergei and I stood on the sideline and wavered between helping and letting them figure it out, partly because we wanted to see if they could do it and partly because we were just too tired to move our legs.

I watched my girls struggle on the soccer field as the sun warmed the top of my head. But I didn’t really feel the sun. I felt a winter coldness in my bones. Evangeline appeared to be the most delayed kid out there, a situation we often find ourselves in. I fought the urge to gather her up, dirt, grass and all, and run back home to our living room where she at least would be safe, and we could be happy with ourselves, and we won’t feel the sting of significant delays or the creeping thought that if we could just do better for her, for us as a family, we wouldn’t be in this situation.

But instead I breathed and watched and prayed and helped here and there. We got through the hour and buckled urine soaked Polly and head to toe dirty Evangeline into their boosters and went home.

Abundant life

At a conference in Canada a couple of weeks ago, Emily Colson, author of Dancing with Max and a dear friend talked about how John 10:10 helped her decide to have a fuller life with her son Max who has autism. Jesus says:

“I came that they may have life and have it abundantly.”

She challenged us to not only think of this verse in terms of eternal life but also to think of it and claim it for the here and now. Tears pooled in the corners of my eyes as she talked because there hasn’t been anything at all abundant about my life lately.

Polly, Evie, Elaina, Zoya, Sergei, and I deserve to live abundant lives. Down syndrome, autism, and stroke disorders don’t get to rob us of life and experience and soccer on a sunny Saturday.

I want our lives to expand. My kids deserve it. I deserve it.

And it will be messy, and smelly, and difficult at times but it will be a whole hell of a lot better than existing in our living room.

We returned to soccer this last Saturday

Evangeline’s buddies figured out that if you hold her hands tightly as opposed to holding her under her arms, she is more likely to walk instead of bend. We watched our little girl who is seven years old but functions around eighteen months fumble the soccer ball ahead of her as she walked a bit. Sure, she still ate grass and dirt. We still had to give her time outs to wet wipe her down and give her a drink but she kept going, smiling the whole time.

We had a change of clothes in the van for Polly and warned her that she could not run away or come see us until her coach told her it was break time. We watched our daughter, who at one time was temporarily paralyzed on the left side of her body because of Moyamoya, giggle and run laps with her team. She still came over to us too often, but she didn’t pee her pants. She kicked the soccer ball and made a goal.

It wasn’t perfect but that Saturday I noticed the warmth of the sun.

“I came that they may have life and have it abundantly.”

With God’s help, I hope that we can claim this verse for the here and now, on typical Monday nights when dinner is late and we all are cranky, and when we get opportunities to sign up for soccer on Saturday afternoons.

You might also like: My top Down syndrome posts In My Arms, the privilege of holding my daughter with Down syndrome Down syndrome adoption … four years in ‘This belongs to’ … realizing who our special needs kids really belong to in a hospital cafeteria My daughter’s stroke & diagnosis of Moyamoya Zemanta

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My top Down syndrome posts

Top Down syndrome posts

If you’ve stumbled upon my blog because you typed in the words ‘Down syndrome,’ WELCOME!

My name is Gillian and I am mom to two little girls with Down syndrome.

Polly

And Evangeline

Polly is eight years old. Evangeline is seven. She came to our family by way of adoption from Ukraine in 2009. Evie was diagnosed with autism this last year, so we are now also a dual diagnosis family.

I’ve been blogging about Down syndrome for about six years. I’ve also written a memoir about Polly’s birth and diagnosis of Down syndrome when my family lived as missionaries in Ukraine called Sun Shine Down.

I write about the ups and downs of parenting kids with Down syndrome. And I share lists and resources for teachers, family members, and friends to learn from as well.

Here’s a quick cheat sheet of my top Down syndrome posts:

To the new mother of a baby with Down syndrome

21 facts about Down syndrome

For Parents who aren’t ready to celebrate Down syndrome

What to do with a severe and profound label for my daughter with Down syndrome

10 things to say when a baby is born with Down syndrome

10 things not to say to a parent of a child with Down syndrome

This little light of mine, watching my daughter with Down syndrome ‘get it’ with PECS

She’s enough: Parenting a child with ‘low functioning’ Down syndrome

An eight-year-old birthday party with Down syndrome

Introducing children with Down syndrome to the classroom

10 things teachers should know about Down syndrome

I hope you’ll find this list helpful. I want you to know you are not alone. There is a great community of families affected by Down syndrome both on-line and in or near your town. Check out the comments here to find more bloggers and some great posts.

Sharing a moment with you

“Mom, you know what?” Polly asks, looking me square in the face with her beautiful, large doe-like eyes.

“What, honey?” I whisper, tired from deadlines, homework, and life that just seems to continue, day in and day out.

“You’re my best friend.”

“Thank you, Polly.”  I start to cry.  “I needed to hear that.”

Even in the midst of the ups and downs of my life, I am profoundly aware of the gift God has given to me in my children. All four of my daughters bring light to a life that is often in the dark. But Polly and Evie, especially, brighten my days with simple things: a hug, a smile, words of love and adoration.

It is important to know the facts about Down syndrome.

But I believe it’s even more important to testify to the fact that my daughters with Down syndrome are living, breathing anti-depressants in my life.

I am so thankful to have them. What a privilege to get to live day by day with that kind of awareness.

***

If you are a blogger, please share your blog address in the comments, and also one of your favorite posts or resources about Down syndrome.

You might also like: Some of my favorite books about Down syndrome An unusual story of a Down syndrome diagnosis World Down Syndrome Day 2013, RAISE YOUR FLAG How He Changed Our Lives, a guest post from a foster mom of a child with Down syndrome in China October is Down syndrome Awareness MonthZemanta

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An eight-year-old birthday party with Down syndrome

An eight-year-old birthday party with Down syndrome

My daughter Polly invited all the girls from her second grade class to our house Saturday for her birthday. The theme was a cooking party. I ordered paper chef hats and aprons for everyone to use and then take home as party favors. The menu included homemade personal pizzas, a fruit caterpillar, a snack butterfly, and cupcakes (thank you Pinterest. I hate you but I love you).

The guests arrived, and in twos and threes, dove right in to pizza making. My husband Sergei manned the pizza station, donned in his own personal apron, “Mr. Good Looking is Cooking.” The rest of the girls gathered at the party table, constructing caterpillars out of grapes and a cherry tomato for the head. A few of them fought over who would sit next to the birthday star. Girls will be girls.

After eating they moved on to presents. Girls oohed and aahed as Polly ripped open present after present with delight. “Thank you for the Strawberry Shortcake car, Libby.” Even in the midst of her excitement, Polly made sure to thank each person for her gift.

After presents, Polly’s friends, all whom most people would deem ‘typical’ piled onto my girl for a group hug. They laughed, and played before popping in a favorite video to watch while eating cupcakes.

Now, I want to be careful.

Perhaps a brand new mother has stumbled upon this post. If that’s you, I want you to know that Down syndrome isn’t always easy. I’m not going to say that life with Down syndrome is just like any other life. It waxes and wanes and some kids have more struggles than others. Sometimes a child’s disability doesn’t warrant what one would call a ‘typical eight-year-old party.’

But I think there is a large population of people who think life with Down syndrome equals a death sentence. To you I say, I’m not hurt you think that. I felt the tug of those words after Polly’s birth. My feet filled with lead. I didn’t think we’d ever have any happy birthdays at all. But now, eight years into our journey, there are more ‘normal’ experiences in our life, in Polly’s life, than not.

Her life is an education I desperately needed. I’m thankful.

Polly has shown me that there are differences in all of us. Some differences are good. And some are difficult.

She’s also shown me that this is what an eight-year-old party looks like… Down syndrome or not.

You might also like: Polly’s birthday, thoughts on celebrating with Down syndrome Why my daughter’s assembly at her special needs school made me cry, A Christmas post 21 facts about Down syndrome For parents who aren’t ready to celebrate Down syndrome Sun Shine Down is now available on Amazon!Zemanta

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World Autism Awareness Day – working on it

World Autism Awareness Day – working on it

Today is World Autism Awareness Day

I forgot.

“Shouldn’t Evie be wearing blue today?” Sergei asked in passing as the kids got ready for school this morning.

“You know, for the autism thing? We got a note about it.”

I changed her shirt, and got our little girl, now seven years old, ready in time for the bus.

I’ve been a part of the special needs world for eight years. I advocate. I love. I accept. I try to help my kids grow and learn and have great lives.

But this is our first World Autism Awareness Day. And I’m not prepared at all.

Evangeline received her diagnosis of autism, in addition to Down syndrome, seven months ago.

I remember thinking she might have autism five years ago, the day we met her in an orphanage in Ukraine. Fear climbed up my gullet that day, and I pushed it down.

I’ve always been afraid of autism.

When we brought Polly home from the hospital after her tumultuous birth in Ukraine and her diagnosis of Down syndrome, I turned her bassinet away from the television. Somehow I got it in my head that watching TV could cause autism. How I got there I have no idea. I wasn’t familiar with autism, had never heard of the possibility of a dual diagnosis, and was living in a foreign country, completely alien to the world of special needs.

But the fear continued.

She’d look at lights or a moving fan as an infant, and my pulse slowed.

By now we were living in the States and I was well aware of the possibility of a dual diagnosis of Down syndrome and Autism for kids. Sometimes I’d sneak on to an online forum, a support group for families affected by a dual diagnosis. I’d cry as I read about kids developing fine, albeit a bit slower than peers because of the extra chromosome, and then it all just stopping. The child regressed. Autism was diagnosed.

Please God, don’t let Polly have autism.

With time my worry over Polly, at least in that area, decreased. She was more than social to everyone everywhere.

And then we adopted Evangeline.

I noticed the lack of eye contact. She was nonverbal. Most of the time she functioned like there was a thick veil over her head, separating her from the rest of us.

For years I tried to get her a dual diagnosis.

It’s post institutional behavior, I was told by the people in white lab coats.

But my mother’s heart knew.

The day we got the definitive diagnosis I cried.

I cried out of relief that we weren’t crazy.

I cried for her, knowing that her road indeed was harder because of this.

I cried because still, in the midst of all my advocacy and acceptance and love for my girl, I was afraid of autism.

I wanted to turn our lives away from the TV so to speak. I didn’t want autism for her.

I didn’t want autism for us.

Here’s the part in the post when the music queues and I say that I’ve gotten over the hump and that I am no longer afraid of autism.

Yeah, not there yet.

But I can say I love our girl, and the same advice I received regarding Polly and Down syndrome, to ‘let the baby change you’ applies here.

Be kind for everyone you meet is fighting a hard battle – Ian Maclaren

It’s World Autism Awareness Day and we are seven months in.

The best I can say is that I am working on it.

You might also like: I’m afraid of autism Down syndrome adoption … four years in Down syndrome and Autism, a dual diagnosis The most beautiful and terrible of promises, lessons learned from my brother with autism Why a wave matters, thoughts on parenting a nonverbal childZemanta

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5 things to do/not do after you receive a special needs diagnosis at Chicago Parent

5 things to do/not do after you receive a special needs diagnosis

 

I’ll never forget the moment I was told my baby had Down syndrome. I was sitting next to her incubator in the hospital, holding on to her heel. I remember being pleased because her eyes were open. She stared intently into mine. The doctor spoke and the words ‘Down syndrome’ crashed over me. Suddenly I was alone without a buoy, paddling like crazy in a choppy, new ocean.

When a parent first hears, ‘your child has a disability,’ it can be shocking, saddening and scary.

If you find yourself with a special needs diagnosis, I have a few suggestions that might help. Read the rest of my article at Chicago Parent..

After finding out the special needs diagnosis, I remember my brother calling me.

Now, I was living in Ukraine and he was all the way in California.

I can’t remember exactly what he said but it went something like this:

“I’m not going to pretend I know what you are going through right now, but I went online and found out some things I can do and say to help you.” He told me that he loved me, and that he was in this with me.

One of the most precious moments of my life. The fact that he took the time to look up a few things… I can’t even…

I also included a list of tips for your friends and family for you to share with them. Advice includes showing up, educating yourself, and refrain from platitudes and pat answers.

I’d love to hear from you. What is your advice for parents who receive a special needs diagnosis and their family and friends?

Related articles across the web

For parents who aren’t ready to celebrate Down syndrome
Autism Awareness Month – repost
A New Diagnosis





You might also like: Premonitions and Down syndrome Memoir holiday gift… Order yours today Join the Sun Shine Down Book Launch Team How I am raising awareness during Down syndrome awareness month Down syndrome adoption … four years inZemanta

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On depression, hiding, and the need for raised hands

On depression, hiding, and the need for raised hands…

(Please note: Once again, forgive my writing sluggishness. I’m sure there will be mistakes in the prose. My mind is a bit wonky after this recent depressive episode…)

“How did your talks on depression go?” my mom asks over the phone as the sound of pots and pans clink in the background of our phone call.

“I mean, was it hard? I found that when I’d go to support groups for fibromyalgia years ago, I’d come home with all the symptoms everyone else talked about at the meeting. Did talking about depression, well, depress you?”

I try to suffocate the sigh rising in my throat. On this phone call I’ve attempted to fake a lift in my voice because when I’m depressed, it lowers an octave. I could host a midnight jazz radio show.

I don’t want my mom to know I’m struggling. Friday ended in exhaustion after speaking to four groups of women on four consecutive days. On Saturday I rallied, and jumped at the chance to spend time with Sergei and Evangeline at the Garfield Park Conservatory in Chicago while the other girls were visiting her in Michigan. But the wave was forming. I felt it in the aches and pains in my body. My mind grew muddy. Lethargy took over usual emotions as we wheeled Evie around ferns as tall as the ceiling.

I woke up Sunday totally stuffed, unable to do much of anything, and thus starting a two day depressive episode that found me, mostly, in bed watching old movies and crying.

Why don’t I want her to know? She understands. She cares. She won’t judge.

I want change. I yearn for growth, acceptance, and understanding in the church. I want people to get help. And still, I hide my depression from my mom, even after standing in front of two hundred women speaking my story into a microphone. My message was simple. Christians get depressed. It doesn’t mean thy are no longer Christians. I looked people in the eye and prayed my words into their hearts.

Please help me erase even a small corner of stigma that holds mental illness in its grip.

About a month ago, Gifted for Leadership published an article I wrote about mental illness and the church. In a few short paragraphs I attempted to add my voice to the low hum rising up from the church about mental illness.

And yet, in my next personal bout of depression I hide and lick my wounds, even from my own mother. I hold myself still. I breathe out prayers and wait for the wave to lose its power.

In the midst of a depressive episode I still don’t have the wherewithal to reach out for help. So am I really a good person to urge others to try?

I don’t know. It’s self preservation, this hiding business. And honestly, at this point in my journey with major depressive disorder it can’t be helped.

But I thank God for progress. My depression doesn’t hold me under as long any more. I come up for air quicker. I do the next thing to get better. Some days, I shoot my hand up in the air, counted, a person fighting to reduce the stigma of mental illness in the church. And other days, for me, the next thing is simply to roll over.

God is at work. Saturday, Rick and Kay Warren are hosting a gathering on mental health and the church in California.

Emily Wierenga wrote a powerful post about what it’s like to be a mental health statistic in the church this week and shared similar sentiments to mine (albeit much more eloquently) about mental illness and this upcoming conference:

Rick and Kay Warren and the Saddleback Church are opening up a dialogue about mental illness this coming Saturday, in light of the struggle and suicide of their son. I love this. I love that we are finally talking about it. But I hate that it took the death of a young man to do it. And I hate that he, and I, are “problems” that the church has to talk about.

Amen, Emily. Thank you for raising your hand and joining your voice. I hate that these conversations cost lives too.

But I am thankful for stirrings of health. A low hum of voices are melding, working, building.

I’d like to ask you to pray. Pray for the speakers and attenders for the conference on mental health this weekend. Pray that churches will awaken through this effort. Pray for people in your life who fight mental illness.

And continue to pray for the battle in general. I’m raising my hand. I need your prayer too.

“Thank you for sharing your story about depression with us,” a woman said to me last week after I spoke at her church.

Her words stirred up tears in my eyes. How do I respond? This is all so personal and scary and needed. I mumbled something quietly about sharing for God’s glory.

As I’m able and when I can, I am raising my hand when it comes to mental illness. Please, God, let it glorify you.

Amen.

Related articles across the web

Rick Warren: Churches Must Do More to Address Mental Illness
Church Leaders Tackle the Stigma of Mental Illness.
On fighting depression: do the next thing…
My Big News… A Book Deal about Depression





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WORLD DOWN SYNDROME DAY – Every story counts

The theme I’m embracing this year for WORLD DOWN SYNDROME DAY is simple.

Every story counts.

I admit, the idea came to me rather selfishly at first. And it’s just me. There’ no bandwagon. I don’t have an organization behind me. I haven’t teamed up with a bunch of different bloggers. So my theme probably won’t go out into the world that far. That’s okay. The message rings true still, to me.

One of the biggest push backs I’ve received (both in and outside the disability community) regarding my book Sun Shine Down is that there isn’t a need for more memoirs about Down syndrome.

“Oh, goodness, another memoir about Down syndrome.” one reviewer said. I could just feel her rolling her eyes as she wrote the words.

Poor reviews are expected in the writing business. The ones I’ve received have actually made me feel legit as an author.

But as I got to thinking about the sentiment ’oh, goodness, another memoir about Down syndrome’, I realized what really bothered me about it. I’m a story person. There can never be enough stories in the world.

Moreover, every parent of a child with Down syndrome has a story.

And every story counts.

I parent two girls with Down syndrome. My daughter Evangeline has a dual diagnosis of Down syndrome and autism. Sometimes, and I feel bad about this, I tend to downplay her story a bit because, frankly, her story, our story, can be difficult. We are struggling with autism. She is nonverbal and sometimes aggressive. Should I really use all that to fan the flame of Down syndrome awareness?

Yes.

The answer is yes.

Because I embracing the notion that every story counts.

I struggled at first with my other daughter Polly’s diagnosis of Down syndrome in Sun Shine Down.

“I know of other mothers who have children with disabilities and right away they loved them and decided to fight for them. That’s not my story.”

I go on to say in the book that my arriving late to the party of Polly’s love is one of my greatest failures. But regardless, again, it is my story. I embrace our sloppy, beautiful, strange, unconventional, redemptive story. I’m thankful for it. I’m thankful for both of my girls. And I am happy to say that Polly and I are completely in love.

Every story counts.

-The parents who grieve the diagnosis.

-The mom who doesn’t give Down syndrome a second thought and gets busy with loving her child.

-The dad who still might, if he has a moment of honesty, struggle with his daughter’s disability.

-The parent who starts foundations and leads buddy walks in honor of her child.

Do you agree?

Then share your story. Leave a comment below that answers the question “When I was first told my child had Down syndrome I…”

Hop over to my Facebook Page. Through out the day there will be pictures and thoughts from parents in their own words about their stories of Down syndrome. I’d really appreciate it if you shared them with friends and family via whatever social media channels you desire.

Every story counts.

Because every person counts.

Every child with Down syndrome matters, regardless of ability.

And today I celebrate our stories, and my two beautiful daughters, who teach me daily about life, faith, and love.

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