Gillian Marchenko's Blog, page 7

Alex & Frederic Bilodeau win the gold of my heart

Alex & Frederic Bilodeau win the gold of my heart

I was out to dinner with a friend when Alex Bilodeau won the gold for men’s moguls at the 2014 Sochi Winter Olympics a couple of nights ago. I couldn’t hear the story over the noise but I saw his exuberance, and I saw his brother Frederic, cheering him on just like he did two years ago in 2010.

The next morning after my four girls were carted off to their respective schools, I sat down with a cup of coffee, and searched for videos and the story of the night before.

I sobbed. Watch Video Here

Our two youngest daughters have special needs. Polly has Down syndrome and a stroke disorder. Evangeline has autism and Down syndrome. My husband and I do what we can to ensure that all our kids are loved, respected, challenged, and cared for. But I worry about our older girls and the concessions they make in life because of the presence of disability. There are plenty of times our family looks a little different from their peers. We can’t do some activities. Our life is packed with therapy and doctor appointments.

It is difficult to admit, but as much as we try, sometimes my older girls take a back seat to special needs maintenance.

But then I see something like this. Alex Bilodeau says his brother Frederic, born with cerebral palsy, is his biggest inspiration in chasing after his dreams. When you see them together, love exudes from their pores. Every word he speaks is true.

“I have a family, a great girlfriend, a team of trainers, but the person who motivates me to go through the highs and lows is my brother,” said Bilodeau. ”He will encourage me in anything I do. He’s the same with my sister. He won’t let up. That’s my brother — the happy camper who motivates us every day.”

(Read more: http://www.ctvnews.ca/sochi/gold-medallist-alex-bilodeau-says-his-older-brother-helps-keep-things-in-perspective-1.1680684#ixzz2t7RkF8Ho)

Photo credit: (Jonathan Hayward/THE CANADIAN PRESS)


My girls would agree

At thirteen and eleven, my daughters Elaina and Zoya are inspired over and over again by Polly and Evie. Their sisters teach them about what really matters in life: keep trying, love people, love life, be thankful. All four sisters love each other for who they are.

And that says a lot.

Last week, Elaina wrote a story for school about having siblings with special needs. Her words were a balm on my tired special needs mama heart:

When it comes down to it, Polly and Evie are simply my sisters. That’s it. I know Down syndrome is different, I get it. But God has a plan for my sisters just like he has one for me and everybody else. My sisters have changed my life. When you meet people with special needs take a minute to get to know them. It will change your perspective on life. I wouldn’t be who I am today without them.

Thank you Alex and Frederic Bilodeau for your great example to us and to the world about what really matters in life.

You’ve won the gold of my heart.

www.gillianmarchenko.com

You might also like: BEAUTY EXPOSED: EXPOSE THE BEAUTY OF YOUR STORY! Setting a fly free, a special needs mom attempts to let herself off the hook in her struggles with parenting Solid resources that are FREE? Inclusion Fusion (all week) and the book Trusting God by Jerry Bridges (on Kindle today) I’m afraid of going on vacation with my kids who have special needs … 10 special needs of special needs parentsZemanta

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If only this were the remedy for depression

If only this were the remedy for depression

My friend posted this video with Bob Newhart today on Facebook and it made me laugh.

Even though I am a mom who fights depression, this video doesn’t offend me at all. I’ve often attempted to snap out of my depression or as the video states ‘stop it.’

Sometimes I can pull it off. It’s about learning your triggers and then learning what you can do to combat them. There’s this window when I feel myself starting to slide towards a sludgy hole, and if I work at catching my thoughts and eat protein and change my scenery, sometimes I can stop it.

I am thankful.

Unfortunately, deciding to ‘stop it’ isn’t really a remedy for depression in general. At least not with a major depressive episode. Depression isn’t a choice. It is an illness. In fact, it is the second leading cause for disability in the world. When I am in the midst of a major episode, I can’t ‘stop’ anything. It’s more like sitting still and waiting for the wave to come to shore.

But I can work toward health outside of those times. And I do. What I find is that although I can’t seem to get rid of my depression altogether, I can create more time between episodes. And when the slippery slope returns in my life, with the help of Jesus, antidepressants, and my cognitive behavioral therapist, I don’t tend to slide down as far.

I’ll keep this video in my back pocket for laughter, encouragement, and perspective.

Just remember, for a lot of us who struggle with depression, we’d stop it if we could.

I’ll keep this video also, because I love Bob Newhart. I mean, who doesn’t?

You might also like: 6 things a mom struggling with depression can do to start the day off better On fighting depression: do the next thing… 10 things not to say to a mother fighting depression Depressed mom = failed mom On coming out of depressionZemanta

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I’m afraid of autism

A few months ago, my daughter Evangeline, born with Down syndrome, was diagnosed with autism.

I’m afraid of autism…

I’m afraid of some of my daughter’s behaviors.

I’m afraid of getting hurt physically and emotionally.

I’m afraid that Evangeline will never talk.

I’m afraid of joining a new club. I’m the Down syndrome mom. I don’t want to be the autism mom, too.

But do you want to know what I am even more afraid of?

I’m afraid of not speaking out for my sake and for others.

I’m afraid of having to act like I’m fine with a new disability.

I’m afraid of keeping my darkness to myself…

Because then the light (and there is a lot of light in my life, in my daughter’s) isn’t as bright.

I can learn how the new club works.

I can learn how to help my daughter so she doesn’t scratch and bite.

I can learn not to take it personally when she won’t come near me for a hug.

I can learn to speak my daughter’s language. I can remember that just because people don’t talk, it doesn’t mean that can’t hear… or love.

But I can’t do these things if I am trapped by fear. I can’t do these things if my energy is wasted on worry.

In my silence, my life becomes small and lonely.

So, I’ll just tell you.

I’m afraid of autism.

And that’s OK. Because saying it out loud dilutes its power.

And I can focus more then, on the power of love.

You might also like: Down syndrome and Autism, a dual diagnosis Down syndrome adoption … four years in The most beautiful and terrible of promises, lessons learned from my brother with autism How one parent chooses to deal with people staring at her son with autism, guest post by Renee Kiernan Daily Bread: parenting kids with special needsZemanta

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On being as dumb as Peter, where I’m at today…

 

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 On being as dumb as Peter

(Note: The ‘he’ in these passages is Jesus)

22 Immediately he made the disciples get into the boat and go before him to the other side, while he dismissed the crowds. 23 And after he had dismissed the crowds, he went up on the mountain by himself to pray. When evening came, he was there alone, 24 but the boat by this time was a long way[a] from the land,[b] beaten by the waves, for the wind was against them. 25 And in the fourth watch of the night he came to them, walking on the sea. 26 But when the disciples saw him walking on the sea, they were terrified, and said, “It is a ghost!” and they cried out in fear. 27 But immediately Jesus spoke to them, saying, “Take heart; it is I. Do not be afraid.”

28 And Peter answered him, “Lord, if it is you, command me to come to you on the water.” 29 He said,“Come.” So Peter got out of the boat and walked on the water and came to Jesus. 30 But when he saw the wind,[c] he was afraid, and beginning to sink he cried out, “Lord, save me.” 31 Jesus immediately reached out his hand and took hold of him, saying to him, “O you of little faith, why did you doubt?”32 And when they got into the boat, the wind ceased. 33 And those in the boat worshiped him, saying,“Truly you are the Son of God.”

I’ve read this story a lot, but upon reading it the other day, I couldn’t help but laugh.

My first thought? Peter is a dummy.

Jesus is right in front of him walking on water, and he still needs proof that he is the Son of God. So he asks him to prove himself once again and Jesus tells him to walk out to him.

Peter gets out of the boat and starts to walk towards Jesus, but then he looks around and notices the waves and starts to sink.

U’hum, I do this exact thing all the time .

And let me just say, walking on water isn’t normal. It isn’t something humans do. This story tells me that God calls us to big things outside of our comfort zone. He wants to increase our faith.

This thought, that God calls us to things, and then helps us with those things, wakes me up a bit. It helps me in terms of parenting kids with special needs, with my marriage, with ministry in our church, with my depression, and writing.

These days, everything I do is out of my comfort zone. My comfort zone is my worn brown chair passed down from my grandfather. My comfort zone is my yoga pants and steaming cups of coffee. My comfort zone is watching The Undercover Boss and breathing, while I wait for waves of depression to subside in my heart.

But no, God wants me to get out of the boat. He wants me to write books and talk to people about my struggles. He wants me to put on jeans, brush my hair, and to share him with others, regardless of my comfort in the matter.

Where I’m at today

“O you of little faith, why did you doubt?”

Instead of looking to Jesus in the things he has called me to do, I look around… What do other people think of me? I’m not qualified for this. He isn’t really going to help me with this, is he?

Every time I start to sink.

And all the while Jesus is right there in arm’s reach, waiting for me. He’ll let me tread water for a while. But once I get it and call out to him, he picks me up and sticks me safely in the boat.

So who’s the dummy? The person who gets out of the boat, falters, and splashes around like she is drowning? Or the person who stays comfortable, who doesn’t put her faith into action, who is happy with her brown chair and Netflix?

I guess Peter isn’t really a dummy. He had doubts and questions, but at least he got out of the boat.

“Truly you are the Son of God.”

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Umm… Hi

So, I’m recovering from Christmas, the kids’ holiday vacation, snow days, digging out my inbox, trying to put together a plan for my book project, working on two magazine articles, hiding from people refueling, and of course it is January so that means I’m trying to eat better and exercise… you know, all that good stuff.

There isn’t a whole lot of space in my life for this little blog.

But I will share this with you:

Last Saturday afternoon at a play structure with the family, a little girl walked up to Zoya who was Evie’s buddy. “What’s wrong with her?” the girl asked.

And here was Zoya’s response:

“Nothing.”

Have a good Monday, folks.

You might also like: BEAUTY EXPOSED: EXPOSE THE BEAUTY OF YOUR STORY! When mom screws up … thoughts about jipping siblings of kids with Down syndrome Perspective Evangeline is six years old today! Daily Bread: parenting kids with special needsZemanta

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Why my daughter’s assembly at her special needs school made me cry, A Christmas post

Why my daughter’s assembly at her special needs school made me cry

The scene: Evangeline’s holiday assembly at school.

I’m late, breathless, with crumbled cookies in my purse to give to her teacher and aids. I forget my camera, and sigh at the fact that my phone takes cruddy pictures.

The gymnasium is small, and the space for parents is even smaller. I cram into a spot on the bleachers and wait with everyone else. The children start to enter. They are wheeled in, walked in, carried, and some proudly strut in by themselves. 150 students. All with some kind of special need.

I spot Evie being led by her teacher. Her Christmas skirt, a hand-me-down from her older sister, barely stays around her hips. She smiles at the crowd. Giggles. I breathe easier. She isn’t afraid.

The program begins. A class attempts to sing Jingle Bells but the CD player skips, and the crowd ends up singing it together. Voices swell. Hands clap. A lump forms in my throat.

I’m at a winder assembly for Evangeline, my daughter, who is thriving and loved in this special needs school.

Her adoption

Almost five years ago, I remember sitting in another school assembly. This one was for Polly (my other daughter with Down syndrome, like Evie). It was her first. Polly was in a blended preschool, meaning that some students in her class had special needs and some did not.

Two little girls in the front row had Down syndrome. I hadn’t seen them before. They looked maybe a year or two older than Polly. I was quite taken with them. I laughed at their giggles and smiled oozy smiles all over them throughout the assembly. I tried to share the love, to notice the other children too, but really, I only had eyes for them.

At that time we had just started the process of adopting Evangeline from Ukraine.

Polly got out of her seat and came over to me and crawled in my lap. I caught her teacher’s eye and she gave the nod that it was okay. Hugging Polly, completely smitten by the other children near me, most differently-abled but, oh, so abled. I pleaded with God internally.

Please bring Evangeline home soon.

At that moment, my love for Evie, although I had never met her, was fierce. My desire to parent, undeniable. I needed to get on a plane. I needed to get to her. She was my daughter. I needed her to come home. Would she love me? Would she find comfortable places to land in this foreign, big world we were about to push on her?

And now

Here we are. Evie sits with her class as they sing a holiday song, and I try not to burst into tears.

She’s been home, she’s been mine, she’s been a part of our foreign, big world for four years.

I have not hidden our adoption struggles. My daughter and I work to bond. Some days we get it. Others, we don’t. She was given a second diagnosis of autism officially a few months ago, and a lot of days, you’ll find our family just trying to break into her world.

But she is here. Dressed in her sister’s hand-me-downs, laughing, and letting her teacher manipulate her arms to join the rest of the class.

“We are so thankful you would come spend the morning with us. We want you to know, we love your kids almost as much as you do,” the teacher says into the microphone at dismissal.

Evangeline is here, performing in a holiday assembly. She’s found several comfortable places to land in our big, foreign world: this school, her church, our home.

There is a glow about her.

I think it is love.

And that’s why I tear up. Out of thankfulness that just because something is difficult, it doesn’t mean it isn’t good. I tear up because it is Christmas, and I am thinking of Jesus, God with us. Although we didn’t ask for it nor do most of us know we need it, God provides a comfortable place for us to land in this foreign, big world through the birth of a baby in a manger.

I tear up out of thankfulness for Evangeline, our daughter, who is here.

And I am spurred on to pursue her, to love her, and to do all I can to provide comfortable places for her to land.

Merry Christmas.

 

You might also like: I grieve sometimes, in the quiet places of my heart, the children they are not STORY BLEED MAGAZINE A gift to my daughter’s other Mother for Mother’s Day Down syndrome, adoption, bonding, hot cement, and hearing each other’s voice “You’re doing it wrong” – Special needs adoption and mom guiltZemanta

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Creativity is Sanity, a guest post from author Claire Burge

 

(Everyone, please welcome fellow T. S. Poetry Press author Claire Burge. So great to have you, Claire!)

Creativity is Sanity

Dust is so at home in my grandmother’s kitchen that if I stand with my head titled so that I can see the light gleaming across the kitchen counters, I see not only the light but the soft sheen, the fluff of accumulation. This is Africa after all. As a dedicated and somewhat bored granddaughter I don the kitchen gloves and fill a bucket with water. Scrounging around in a kitchen cupboard for detergent I find a whole pile of crap that needs to be thrown out. I venture towards the next cupboard. The content speaks of chaos. The next cupboard, well that’s like a fairytale playing out in a forest.

“Granny how long has it been since you sorted your cupboards?”

“Years Cookie. I cook. I knit. I do washing. I garden. I brew the finest grape juice you’ll ever taste and I can your favourite guava puree. But cleaning, that I leave for …”

“For who Granny? You know granddad’s not going to do it. And Sissy certainly won’t.”

She giggles softly.

“Maybe that’s why I convinced mom you should come visit.”

“Mmmm. In that case you all better vacate the kitchen area for the day because when I get going, I really get going. ”

“Thanks Cookie.”

9am, 11:23am, 12:47pm …

“Cookie, we need to eat.”

“Granny I told you this morning that wouldn’t be possible. Eat some pecan nuts off the tree or go visit Aunty Dolly and Uncle Nick.”

16:05pm.

Her scream is as sterile as the bleach I have just poured onto the melamine floor. Scrambling up, I rush into the dining room where I find Sissy staring down at her hand. The hole she has bitten into her flesh is like a faucet. It spews red like a ketchup tap. Her lips are also stained cherry.

Granny is suddenly in front of me and pushing me into the bathroom, closing the door firmly behind me.

“Stay there until Granddad comes and fetches you.”

Sissy is muttering and kicking. Glass flies across something and shatters.

I hear the car starting … Quiet.

I stare at the wooden laundry box. Anger and hurt course through me like co-joined twins, unable to free themselves. I have upset Sissy and I have no idea why.

Granddad comes in quietly, sits heavily on the edge of the bath, pulls me close and cries into my hair. He cries so quietly that I only realise he is crying when one of his tears slides down my neck.

He explains that Sissy doesn’t want things to change, that everything has to stay exactly as it is or else she gets upset.

“But why granddad?”

The reasons tumble out of him but my childlike tendency is towards pure irritation with Sissy. He knows this and stops. I manoeuvre the broom around the glass, getting it to balance on the dustpan as I try to squeeze her scream and the gaping hole in her hand out from behind my eyes, away from my brain. I just want it all to go away.

Granny arrives back home from the hospital. Sissy, stitched and bandaged, refuses to talk to me, despite Granny telling her to apologise.

“Cookie can you please move everything in the kitchen back to exactly the way it was?”

“Will it make Sissy stop being cross with me?”

“I’m hoping it will.”

Two days later Sissy is still not talking to me. She sits in her room all day and crochets. She won’t even bake bread or help Granny with the washing: the two things she loves and lords over. I sit under the Jacaranda tree close to the chicken coop. I pretend to be a nurse and I stitch up the holes I have poked into my doll’s hand.

Dad comes to take me home. One week early.

It’s a very long ride home.

He tells me for the first time about Sissy, Elaine Cooks, his older sister, who was born a typical two year old. He bites back tears as he tells me about the Malaria, the Blackwater Fever, the Quinine and the decision that the doctors made to overdose her, to save her life, and the resulting brain damage.  She turns 45 years old soon he explains but inside she is only seven years old. He gently nudges me towards the conclusion that I am actually “older” than her.

20 years on I am able to understand for the first time, why dusting the counter came second in my grandparent’s home: creativity in varied forms: planting, baking, gardening, writing, growing, turning soil, raising chickens, watching dough rise, singing, pushing ivory keys on a wooden piano, pegging washing to a line made a disabled mind come alive with joy.

Creativity was sanity.

Creativity was the bedrock to which my grandparents turned when it all got too much. I would venture to say that neither my grandmother or my grandfather saw their actions as deliberately building their creativity. I think they would dismiss it as simply living with reality and getting on with the day, but in hindsight, I think it was more. Their choosing to weave so many forms of creativity into daily life not only kept my aunt stimulated, it also became the reason why they were able to live fully alongside her.

Choosing to gift oneself with creative time, space to develop one’s own creative instinct and bent, is a gift I invite you to give yourself.

###

Author of Spin: Taking Your Creativity to the Nth Degree, Claire can mostly be found geeking out on productivity with her Get Organised clients. She is also often behind a lens photographing food and chasing down mountains on her downhill mountain bike. Straight talking, solution-finding and very cheeky are some of the terms most often used to describe her. She has a particular soft spot for families with special needs.

Connect with her at:

Spin:

http://www.amazon.com/Spin-Taking-Creativity-Illustrated-Edition/dp/0989854213/

Author Website:

http://www.claireburge.com

Get Organised:

http://www.getorganised.co

G+:

https://plus.google.com/u/0/+ClaireBurge/posts

LinkedIn:

http://ie.linkedin.com/in/claireburge/

Twitter:

http://www.twitter.com/claireburge

You might also like: Sun Shine Down is out in the world. What now? Thoughts on being two people at once, a mom and a writer Sun Shine Down is now available on Amazon! Join the Sun Shine Down Book Launch Team The big cover reveal for “Sun Shine Down”Zemanta

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My Big News… A Book Deal about Depression

My Big News… A Book Deal about Depression

I’m thrilled to share my news! Last week I signed a contract with InterVarsity Press to write a memoir on depression and faith, and how the two coexist in my life.

This book has been rummaging around in my head for a few years. I’ve written snippets and scenes here and there. Once Sun Shine Down published, I knew this was the next project I wanted to take on.

Why does a person want to write about depression? Why would one want to share the hard truths of her life?

Well, 1) I don’t completely know, 2) I’m a hot mess, and 3) I truly believe that without darkness the light isn’t as bright.

I’ve struggled with depression on and off my whole life, (especially postpartum depression after the birth of my kids) but my biggest episode to date happened a couple years ago, and I worked and prayed and struggled tooth and nail to get out of that pit.

Depression is the second leading cause of disability world-wide, and yet, largely still taboo in most faith communities. The subject of mental health pops up on our culture’s radar after tragedies like Rick Warren’s son committing suicide, but than after a few weeks, it goes back under the rug.

I’m writing for those of us who battle the illness known as depression and for our families. It’s time I speak up and join the cause.

It’s been said that depression isn’t a crock-pot illness, meaning that if someone struggles with mental illness, no one will be bringing them dinner like they would, say, after a surgery or another medical issue.

But so many families are struggling, and so many still think they have to keep it a secret.

So I’m telling mine.

Interested in learning more about mental illness and the church? I’m reading a fascinating, needed book right now called Troubled Minds: Mental illness and the Church’s Mission by Amy Simpson. It is definitely worth your time. I wish everyone would read this book.

You might also like: 10 things not to say to a mother fighting depression A glimpse at a mother’s depression A spouse’s perspective on depression Listen to my podcast with GirlfriendIt Radio! Can a Christian be depressed?Zemanta

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