A few places I’m showing up…

A few places I’m showing up…

I wanted to make sure me 5you know about a few places I’m showing up these days both online and in print.

About Down syndrome

Today's Christian WomanI have an article up at Today’s Christian Woman called Fighting the Darkness about my daughter Polly’s diagnosis of Down syndrome:

Sometimes I look back on that time with shame. Having a child is a good thing. We know from the Psalms that “children are a gift from the Lord” (Psalm 127:3). And my theology is rooted in the providence of God. Down syndrome did not surprise him—but it surprised me and seemed to blow the candle out of my life. I assumed children with special needs would be born to other parents, not us. I stalled out in the dark, and all I wanted was to get out of the darkness as quickly as possible.

Read the rest of the article here.

About special needs: Back to school tips and a frank talk about therapy

Chicago ParentI have two feature articles in the most recently published Chicago Special Parent. One is entitled 10 ways to help your child with special needs make a positive start to the school year:

For families affected by special needs, the new school year has added challenges and concerns. How will my child interact with her new teacher? What can I do to ease him into a new routine? Will she be able to keep up with the curriculum? Is his placement the best? Where did I put her most recent IEP? Chicago public schools start Tuesday, Sept. 2. Many suburban schools start in August. Here are 10 ways to help your child with special needs start the new school year on a positive note…

Get all 10 tips here…

The other Chicago Special Parent article is Chicago mom advises parents of children with special needs to trust their instinct in regards to therapy:

When it comes to therapy, one size does not fit all. Less therapy? More? Take a season off? The answer to all of this is yes.

Read the rest of the feature here…

About parenting school-aged girls

faith-happeningsAnd my post at Faith Happenings: your complete, tailored, faith resource called Believing I am fearfully and wonderfully made for the sake of my girls:

I am a mom. My body has been beat up through the years. My stomach is wobbly from growing babies. Stretch marks snake up my belly and curl around my thighs. I am at my heaviest weight to date, but regardless of all that, I know that I am loved, and that my body simply holds me, and that I have value.

Read the rest at FaithHappenings…

Zemanta Related Posts ThumbnailAnd lastly, my memoir Sun Shine Down is celebrating its one year anniversary out in the world. Stay tuned for a party (once I get my kids back to school!) including a blog tour, some fun giveaways, and a chance to interact with my daughter Polly and I. Thanks so much, everyone, for your support!

Depression can no longer be the elephant in the room

 Depression can no longer be the elephant in the room

Robin-Williams

Robin Williams died yesterday from his own hand.

Yesterday morning, I sobbed in the shower and fought thoughts in my head that people wouldn’t think I would have, or even allow myself to have as a Christian, a Pastor’s wife, a writer, a speaker, a mother, a wife, a daughter.

But I do have thoughts. And sometimes they are very bad.

Last night I sat at a table in a Mexican restaurant with my sister and her husband, my brother and his wife, and my nephew in Michigan. We were all laughing and cutting up as we often do when we are together. I was trying to keep up. But I think I laughed a little too loud at a few things. My hands shook a little. I hoped no one could tell.

“Hey, I just read a tweet that Robin Williams died,” Ben said.

“Is it true? Is it a hoax?” we all wanted to know.

“This is from CNN. It says it was a suicide.”

The mood of the table changed instantly, all of us thinking about Robin Williams; Mork and Mindy, Mrs. Doubtfire, The Night at the Museum, Dead Poets Society, so many movies, too many to name.

Our conversation, of course, turned towards the sadness of it all. What a loss. What a talent. How terrible. I can’t believe it.

We talked a little bit about suicide too. All very respectful. All of us just spitting out things we were thinking at a time of great shock. Can’t imagine doing it to your kids. So hard that a person is in that much pain that they go to that place, it is importance to stay close to a person who is struggling, and other things.

I listened. I agreed. I chimed in a couple of thoughts. I shifted my weight.

When I got back home later that night, I went on-line to find out more. I read that he had been struggling with severe depression.

Depression. Great.

I stood in the shower at my parent’s house sobbing on Monday morning. No one else was home and I had just finished getting angry with my mom and my daughters about an hour before… I no longer remember why, or what I said, or what they said, I just know that I needed to apologize when I saw them later that day.

Something had been off with me on Sunday, too. I was anxious. Sweat poured down my face. I would laugh at something that was moderately funny until tears streamed down my face. My hands worked a fidget toy around and around, a gadget I had bought for my kids at some point, but now keep in my purse for myself. I cowered and even screamed out a few times in the car as my husband drove his usual way, sure that we were going to flip the car or hit someone.

Yesterday morning in the shower, my mind raced with negative thoughts. If they see who I really am they won’t love me. I am a terrible person. I am losing my mind.

I fought the thoughts with rebukes. No, I’m not. Thank you for sharing. Not listening. Jesus give me your peace that surpasses my understanding. I need it now. I got out of the shower, dried, got dressed and made sure I took my anti-depressant for the day. I slathered the Young Living essential oil Joy over my heart, and Peace and Calming on my neck and shoulders. I bowed my head and prayed. I texted my husband to let him know I was struggling. I took deep breaths; in for five counts, hold for five counts, let out for five counts.

I worked ‘my program.’ The stuff I do to fight the ugly monster of depression that unfortunately exists in my head. At that moment I had a choice: to give in to a depressive episode, or to fight it tooth and nail.

I chose to fight, and I won that day. That’s the deal. You fight depression day by day.

But here’s the thing: I don’t always have a choice to fight. And I want to try to help people understand that others don’t always have a choice either.

Sometimes my depression is just too strong. It is a tsunami wave and I am a toddler. I get knocked down before I even realize what is happening.

Because depression is an illness.

People think and even say things: that person should just snap out of it. That person who committed suicide should have thought about how it would affect his family. That person should have gotten some help.

I understand. I even agree to an extent. Suicide affects everyone who knew and loved the lost life. And depression is tricky. It is an active illness in the sense that one needs to participate in the action of getting better if she is able. And there is help to be had. I read somewhere recently that depression is 95% treatable, as in 95% of those who seek help for depression can find it.

This encourages me. It is true so far for my life.

I’m not cured of depression. But it no longer governs every day of my life.

But when a person who is depressed gets to the point of making a plan to take her own life, she is just as sick as a person in hospice with raging cancer. It is a hidden illness. Imagine seeing depression on a person, imagine hundreds of tumors and ulcers on a body, oozing, and if untreated, causing the person to get sicker and sicker.

When a person who is depressed gets to the point of making a plan to take her own life, she needs help (well, she needs help way before then, but more than ever); a doctor, a family member, an in-patient care facility, a friend, a therapist.

If you are depressed, please, let me say this: reach out to someone. This is not your fault. And you can’t handle this on your own, whether you are a pastor or the Dalai Lama or a regular everyday Joe. ( The National Suicide Prevention Hotline is at 1-800-273-8255.) (Here are warning signs for depression.)

If you love someone who battles depression, if they talk to you about their struggles, don’t blow them off. This is your job. That person may be too sick to bring up their mental illness. If you saw a car accident and a person was trapped inside, would you drive by? How about if the person trapped inside was your mom or your sister or your friend? Watch for clues about suicide: isolation, quirky behavior, verbal signs (I want to die, I don’t want to do this anymore), physical changes…  (Here are other warning signs of suicide.)

The stigma that depression is just something weak or lazy people can’t get a handle on… of mental illness in general… needs to be abolished.

Depression can no longer be the elephant in the room.

As long as it is; in living rooms, in churches, or out to dinner with friends, it will continue to be a silent killer.

I’m praying for Robin William’s family and friends and all who were touched by his life.

What an incredible loss.

How I can best advocate for my kids with special needs

(A version of this post first appeared on my talented friend Addie Zierman’s blog. I’ve changed it up a bit to post here because it still rings true for me… it often does.)

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How I can best advocate for my kids with special needs

(This was writing back when the most recent Chicago winter wouldn’t end.)

It’s nine o’clock in the morning. I spoon leftover chili into my mouth and look out a smudged window full of fingerprints. My four daughters are at school after days at home because of icy temperatures that managed to fluster even the most tenured Chicagoans. The house is still, quiet. My dog Scout licks her lips as she naps in a chair next to me.

I’ve been wanting to write about advocacy, about the special needs mom, and how to be inclusive to her and her child in your community. But today, I don’t want to write about that.

I have two kids with special needs. Polly has Down syndrome and a stroke and seizure disorder. Evangeline (adopted from Ukraine) has Down syndrome and autism. I write and speak and educate about disabilities and own the proverbial advocacy pompoms. I often don a cheerleader outfit when it comes to my girls.

But not this morning.

Today I’m not throwing my pompons in the air to get your attention. I’m not thinking about inclusivity. I’m thinking about survival. I’m not thinking about changing a community. I’m wondering how in the hell I can stop my seven-year-old from breaking up the floor boards in her bedroom and eating them.

I’m not a cheerleader. I’m just a deflated mom sitting in her pajamas, eating last night’s dinner for breakfast.

Today I can’t really advocate for my girls on a large scale.

But I can do this…

I’m going to love my children.

As I spoon lukewarm chili into my mouth, a thought occurs. Perhaps the best way to advocate for my girls is by loving them well and enjoying the crap out of them. And any mother will tell you, loving our kids isn’t always easy. It takes work. Maybe I should ration what little energy I have in the trenches of early motherhood not for big groups of people but for those in my charge. Mother Theresa said “Never worry about numbers. Help one person at a time and always start with the person nearest you.”

The person nearest to me…

“I like you best,” Polly says to me first thing when she wakes up in the morning, her nose all bunched up as she giggles. Her arms encircle my neck.

Advocacy on a larger scale will happen. I’ll get over my bad mood, apply chestnut colored lipstick to my lips, and stand in front of a group abolishing myths and assumptions about disability with Hallmarkisque remarks and funny stories about my kids. I really do want the world to change. I want everyone to see value, purpose, and dignity in people who are differently-abled.

But I realize that as a frazzled mom of four girls, the most important work I should attempt to sustain is to love my children, thus showing the world not only that kids with special needs can be valued, respected, and loved, but that they are.

A Down syndrome diagnosis shouldn’t be about luck

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(Friends, please help me welcome Heather Bradley today on the blog… Thank you, Heather, for your tireless efforts to help every family have ‘good luck’ when they get a Down syndrome diagnosis.)

A Down syndrome diagnosis shouldn’t be about luck

Sometimes life can stop you in your tracks.

“Your daughter is showing signs that she could have Down syndrome.”

When our daughter, Isabel, was born in August 2012, those were the words my husband and I heard.

At first, I felt blindsided. Down syndrome seemed to push me into a pit and I had no idea how to get out.

However, I did get out.  You see, Isabel has Down syndrome and today I’m perfectly happy about that.

But in looking back, now I see that I was fortunate.

I was fortunate that our OB, nurses and pediatrician never once said they had “bad news” or talked about Down syndrome in a negative way.

I was fortunate to have received a large packet of up-to-date information so I could take a crash course on what Down syndrome is and isn’t.

I was fortunate to have a husband who told our waiting family members our suspicions that Isabel had Down syndrome so I could avoid talking about it until I was ready.

I was fortunate that our 5 and 3-year-old daughters got to celebrate the birth of their new little sister with no understanding of fear and worry.

I was fortunate that we only heard “Congratulations” and “She’s perfect”.

I was fortunate that we had good health insurance and the additional medical bills weren’t a burden on our family.

I was fortunate that a Down syndrome parent support group was relatively close to where we lived.

I was fortunate that I found another “family” of new mothers in a Facebook support group.

A diagnosis story

Everyone has a diagnosis story. Mine is a fortunate one.  For this, I will forever be grateful.  However, I see areas where I could have used additional support, information and connection.

I remember feeling overwhelmed looking at the wealth of information on the national organizations websites because I wasn’t ready to see adults with Down syndrome or think about inclusive education.

I remember those first few nights in the hospital when I could have benefited from the connection of knowing another family impacted by Down syndrome.

I remember those first few weeks when I could have used professional guidance as I watched our newborn daughter struggle to gain weight while breastfeeding.

What about those who are not as fortunate on this new ride?  It shouldn’t boil down to the luck of the draw.

These needs prompted eight mothers to start the Down Syndrome Diagnosis Network.  Our goal is simple; to ensure every parent has a good start on this journey.  Check us out.

Follow us.

Join us on Facebook, Twitter, or on our website.

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Heather Bradley is President of Down Syndrome Diagnosis Network, a Non Profit Organization that launched this past March.  She and her husband, Mike, live in Stillwater, Minnesota. They have three daughters and a yellow lab.

Listen to me on ‘So Here’s the Thing’ podcast with Kathi Lipp

the sun will shine again kathi Lipp

Listen to me on ‘So Here’s the Thing’ podcast with Kathi Lipp

Friends, today I am on a podcast called ‘So Here’s the Thing’ with Kathi Lipp about my book, what we do when life throws us curve balls, and what friends and family can say when someone they love has a child with a disability. I’d love for you to check it out and share it with others.

Here’s what Kathi had to say about our exchange:

“Just when you think you have this life thing figured out, here comes a major curve ball that rocks your world. How would you react? How would your faith be tested? Gillian Marchenko gets real on the podcast this week on how she dealt with the birth of her third child and the diagnosis of down syndrome. http://www.kathilipp.com/podcast/107-when-life-throws-you-a-curve-ball

I’m also giving away a copy of the Sun Shine Down there.

Leave a message on the podcast site for a chance to win.

And Click here to stream the podcast… 

Thanks!

Oh, and I’m very sorry about my nasally voice.