A Down syndrome diagnosis shouldn’t be about luck

heather2

(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.

heatherbiopic1

 

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.

She lives hard and well, and falls asleep fast

Sun Shine Down Polly hug

She lives hard and well, and falls asleep fast

We’re lying in bed together just before she goes to sleep. She has her arm slung over my body. We look at each other. Face to face. Just the two of us. I start singing a song and Polly joins in even though she doesn’t know the words. I sing, and she sings, and her relaxed attempt at joining in without knowing what she is doing and without realizing she should care sends a tickle down my throat. I break out into laughter and she joins in with that, too. We laugh until we can’t breathe. Tears stream down my face. Her smile is as wide as a waxing moon. I stare at her beautiful almond eyes and think, who would want to give this up?

They say that moments make up our lives.

If that’s true, then I best remember the good and the bad.

polly car22

The bad: me looking away at her diagnosis of Down syndrome, her standing and falling over way past when she should be walking, head shaking stroke in the middle of eating pancakes at Bob Evans, brain surgeries, her hand wobbly as she attempts to write her name, kids doting on her at school and then walking away to talk to their ‘real’ friends, a little girl following us at the park asking “What’s wrong with her?”, and Polly, smiley, happy Polly struggling herself as she grows and attempts to figure things out. “Kids don’t like me, Mom. I’m different.”

But there is more to the story. Because for all the bad moments, there are a million good.

farm2

The good: jumping out of bed every morning, “What’s going on today, Mom?” ready to accept the answer with joy and vigor, her sisters teaching their classmates about Down syndrome, Polly thanking the nurse after a shot, her hard earned walk turning into a run, her body stopping and taking a deep breath when frustrated, the girls from her class coming to her cooking birthday party, her dash up to the front of the church to join her dad, hand raised and all, in the benediction, bothering her big sisters just like sisters would, getting up and singing to an auditorium of people, looking out for Evie when she is sad, her usual greeting of a smile and a hug regardless if she knows you or not, her little voice praying The Lord’s Prayer with the rest of the family, ‘Give us this day or daily bread,’ her little hand warm on my cheek, “You are my best friend, Mom.”

Moments make up our lives, right?

Then I have to remember that the bad is just life. The bad moments have a purpose. The bad make the good that much better.

Polly’s good moments resoundingly beat out her bad. Oh, of course she is human; mean and selfish and sneaky. “Polly, are your toys cleaned up?” “Yes,” she lies, happily running on to her next activity.

But also, there’s this: she is a bell that rings daily. She was made to exude sunshine. She does her job well.

Polly ringing the bell

Seconds after we are crying from hilarity, she is fast asleep. She’s been known to fall asleep mid-sentence.

She lives hard and well, and falls asleep fast.

What more could a mother want? I must remember moments like this.

Moments make up our lives.

Why I tell my kids about my depression

A sculpture of the mourning woman. Old graveyard.

Why I tell my kids about my depression

I guess the short answer is: they already know about it anyway.

I have four girls. I have depression. One of my most serious episodes occurred at the end of 2011 into 2012. At some point during that time, I basically gave up on life. It’s hard to admit as a mom, and also as a Christian, but I stopped functioning. I found myself in and out of bed, sometimes up to a week at a time, for months. Unless there was something I absolutely had to do, I was locked away in my room, sleeping or watching television.

Before 2012, my major depressive episodes occurred mostly around the birth of my kids. So the girls were younger. They didn’t notice as much, And I liked it that way.

But two years ago, my children were 11, 10, 6, and 5. The older girls, obviously, knew something was up with mom. All of a sudden I wasn’t making their lunches, picking them up from school, participating in family prayers, washing their clothes, or kissing them goodnight at bedtime. Their mother was no longer home, although I spent the majority of my life those months in our house.

Since then, as I am able, my goal has been health. I call it ‘working the system.’ There are several things I do to help me stay in the safe zone and away from the waves of depression that still threaten (and sometimes succeed) to knock me down on a daily basis.  I pray. I read scripture. I see a cognitive behavioral therapist, I take anti-depressants, I am trying to open up more to friends and family, and recently I started to use essential oils to combat moods.

I’m not healed. But I am healing.

But depression lingers as a family illness.

It not only affects me. It also affects my husband and my kids. One of my daughters is often angry that she has a mom who fights depression. Another doesn’t talk about it much, but spends a lot more time alone in her room. The little girls show their emotions, too. One wants to always be in my face, like if we aren’t touching, I’ll disappear. The other tends to ignore me after a bout of depression. I have to work to get back into her good graces.

So here is some ground work our family has set into place regarding my depression:

1. Our children are told when I am struggling.

Trust me, they can tell when I am having a bad day. But still, we say it out loud (and if I can’t verbalize it, my husband does it for me). I am a firm believer in words. If the spirit in our home is downtrodden and we don’t talk about it, then it becomes a bigger deal and scarier to our children. If we talk about it, depression no longer is the elephant in the room. By naming it and talking about it (according to the girls’ ages and level of understanding), it isn’t me against my family, but us together moving towards health. It also teaches my kids to talk about their struggles, too.

2. They are protected from it too, though. 

But we don’t tell them everything. Our job as parents is to protect them. There’s no need to go into the depth of my despair. They are not my confidants or my counselors. I’m the adult. I’m the mom. They should get to be the kids.

3. When I’m not actively struggling with depression, my children can tell me how they are feeling.

One of my daughters is a verbal processor. She needs to talk about things to get them out of her system. So our rule is that she can say anything she wants to me about my depression when I am well enough to hear it. “I hate that you have depression! You don’t do enough as a mom! Why can’t you just get over it?” I let her tell me what she is thinking, and pray that I have the wherewithal to stand it, and also to grow from it. I commiserate with her. “I’m sorry that my illness is so hard for you. It isn’t fair. I am trying to get better.” I don’t know if this is right or wrong, but I know she feels a lot better being heard. Her mom cares. That’s huge to her.

4. Life goes on when mom is struggling.

Yes, everyone has to pitch in more when I am not doing well. But generally, we want our kids to know that life goes on. My husband and I try to get them to all their school and social obligations. There’s still laughter in the house, and prayer. Sergei makes a point to spend more time with them if I’m out of commission. I am trying to connect more with all of them as I am able. The kids are learning (and re-learning, and re-learning) that life isn’t perfect. People get sick. People struggle. But life continues.

5. And God is still good.

We are believers in Jesus. I want my kids to see that in the midst of trials, God is still good, and he is still in control. It is work, I’m not going to lie, but I try to thank God for what he is teaching me through my depression… in the presence of my children. I want them to see that I trust God. And that they can trust him too.

6. Having a plan regarding my kids helps me.

Guilt and catastrophic thinking are two major components of my depression. “They hate me. I’m the worst mom in the world.” unfortunately are thoughts I combat often. Knowing that we have a structure in line for our kids helps. It helps me to feel like a better mom because I am doing what I can, well, to be a better mom.

If you struggle with depression or another mental illness, what are some things you are doing in regards to family health? I could use more ideas!

Interview with ‘Broke’ author Caryn Rivadeneira

Interview with “Broke’ author Caryn Rivadeneira

Years ago, while visiting a Sunday school class at a new church, the teacher challenged us to take out our wallets and pass them to the person to our left. “Now, just wait,” he said while most of us squirmed in our seats. Anxiety grew as I watched the man next to me hold my wallet even though there probably was only a ten in there. Money: how much we have, how we get it, save it, spend it, and give it, is eerily personal, although it governs how we live, and often times, how we love. Our parents taught us that talk about money was impolite. You just don’t do it. But there’s lessons there, right? Can a person be broke, and yet still believe in an abundant God?

After a few moments that day in class, the teacher said we could reclaim our wallets. The whole room let out a collective sigh.

Introducing Caryn Rivadeneira

I’m pleased to welcome my friend and fellow INK and InterVarsity Press writer Caryn Rivadeneira today. Caryn’s most recent book Broke, What Financial Desperation Revealed About God’s Abundance tackles this taboo topic of money, more specifically, lack thereof, and what God taught her family through going broke. Why did Caryn chose such a difficult subject? And how does a person of faith handle it? In this brief interview, Caryn shares how God showed up through her experience, and also what she loves and hates about writing. Enjoy! (And get yourself a copy of her book. I highly recommend it!) Welcome Caryn…

broke book

Caryn, how did you decide to write about such an unexplored topic?

I don’t know that this topic is so unexplored as a genre. But it had been unexplored in my own life. For sure.

So, while we were going broke and then when we were broke, I had a hard time with God to say the least. I doubted his faithfulness and his goodness. For a while, I doubted his existence. I just couldn’t reconcile what I thought were qualities of a good God, a provider God, with what he allowed in our lives.

All along there were “simple” solutions to our financial desperation that a sovereign God could’ve “fixed” for us. So when he didn’t, I had to face my doubts and questions head on. If I were going to believe God existed and that he was faithful and that he was good, I had to look hard at my assumptions of what God’s faithfulness and blessings looked like.

Because I figure out what I think (and what God’s trying to teach me) by writing, I started writing what became Broke. Through it I began to see God’s “hand” in places I wouldn’t have otherwise. I also started to see his provision to us, his presence with us, and his goodness and faithfulness to us. And it helped me realize how upside-down my theology had been.

My hope is that my readers see this, too. We often misunderstand blessings and provision.

Even if we outwardly eschew the Prosperity Gospel, still: most of us associate God’s goodness with blessing us with health and wealth and easy street livin’. A quick gander through the Bible tells us that ain’t so. But most of us don’t like to think that God could bless us by letting us go broke, or that he blesses us by depriving us of something (or someone) that’s normally seen as the blessing.

And yet it’s in our neediness, in our dependence, that life in God is at its richest.

You write beautifully about nature in the book. Can you share a little bit here about the correlation between nature/money/God’s provision?

You’d think I was much more outdoorsy than I am from what I write in this book! I’m not really in those woods that much. Maybe that’s what makes them so sacred to me. God and I have some of our best conversations and wrestling matches in our walks through the woods.

When I need to lament—to gripe or groan to God about a hurt or frustration or some confusion or anger—I take it to the woods, or just outside. Somehow it’s there that I “hear” (or taste or see or smell or feel) God and his presence better than anywhere else. I can start the walk all angry and stompy and frustrated with God’s “negligence” and end it tingling with God’s presence and abundance.

If I believed in magic, I’d call it that. But instead, I know it as the miracle that happens when we accept God’s invitation to explore him, to take life up with him, to enter into his mystery and his unusual ways.

So while I’d love to say that I appreciate nature because when I look at birds and foxes and lilies, I remember Jesus’ command not to worry because his eye is on the sparrow and I’ll be fine. But not so. The “do not worry” and “his eye is on the sparrow” are tough passages. I confess: it only takes one run-over squirrel or one lightening-struck branch to make me go, “Oh, really?” to Jesus’ words. “So I shouldn’t worry then, Jesus? Your eye was on that squirrel and that branch?”

My time in nature is really about taking these sorts of hard questions to God. It’s there that I get reassurance of his mysterious work in the world—even though lightening still strikes and squirrels still get mowed down.

There are so many take aways. What’s one that has stuck with you since Broke published?

Oh, man. Is it bad to admit I still feel like much of it is a work in progress? It’s not like I’ve mastered the stuff I write about. It’s all about what I discover along the way. I have to revisit so much of it, remind myself to look for God, to stay sharp for his presence.

But the one idea I can’t stop noodling is his mystery. I love, love, love that God is mysterious and beckons us to explore him. I love that when God is confusing, when life disappointing, when our hurts are overwhelming, he welcomes our big questions. God invites us to poke around, to peak behind curtains, to run up those secret stairs in an effort to know him better. That’s what the Scriptures offer us and that’s what a life lived keenly aware of God’s presence and work offer us. Again, it’s in this mysterious and adventurous journey with God that abundant life awaits.

Writing question: What is the hardest thing about writing books in your opinion? Best?

The hardest thing about writing books is promoting books.

Of course, writing a book is a ton of work (and the work is not limited to butt-in-chair time, but includes the decades of mastering the craft, the months spent dreaming, planning, plotting and then the ever-restless heart, mind and soul that must accompany the book-writing). But writing a book energizes me. I love it and don’t think of it as “hardest” in any way.

But promoting a book, being “on” and “out there?” Fun, but exhausting. Facing less-than-stellar reviews, worrying about disappointing publishers if sales don’t meet expectations? Not fun, and exhausting. Definitely the hardest.

The best part about writing a book is the rest of it. I love everything from the initial seed, what-if thoughts that spark an idea to the jotting down random notes to the starting to craft chapter ideas and a proposal (okay, I don’t really love the proposal part), to the sitting down to write. The sitting down to write is actually the best.

Being able to do this is one of the greatest blessings of my life. And I’m thrilled that God broke me to bless me in this way. It may sound cheesy and trite, but it’s true. Writing books hasn’t made me rich financially but it’s made me rich in way better ways.

carynCaryn Rivadeneira is a writer, speaker and author of 5 book, the most recent of which is Broke: What Financial Desperation Revealed about God’s Abundance (InterVarsity Press, 2014). You can hear Caryn on Moody Radio‘s Midday Connection, where she is either on-air or producing, part-time. Caryn lives in the western suburbs of Chicago with her husband, three kids and one rescued pit bull. Visit Caryn at carynrivadeneira.com.