The Fault in Our Stars

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fault-in-our-stars-poster-largeWelcome to the Between the Lines Book Club, a book club especially for mothers and teen daughters! If this is your first time using Between the Lines, you might want to click here for an explanation and FAQs. The Dash-Board below will give you an overview with no spoilers — here’s the place to look if you are still deciding whether or not to read this book. The Proceed With Caution section will give you a list of general misfirings in the book that may help you decide whether or not this book would be positive reading for your teen. The Sara Says section contains spoilers, and it is my general take on the book. The Discussion Starters will hopefully enable you to have a Mother/Daughter Book Club with lots of rich conversation. Please let me know in the comments section what works/doesn’t work for you, and leave suggestions for future books you’d like to see here. Happy Reading! :)

- THE DASH-BOARD

- The Fault in our Stars by John Green
- From amazon.com:

Despite the tumor-shrinking medical miracle that has bought her a few years, Hazel has never been anything but terminal, her final chapter inscribed upon diagnosis. But when a gorgeous plot twist named Augustus Waters suddenly appears at Cancer Kid Support Group, Hazel’s story is about to be completely rewritten.

Insightful, bold, irreverent, and raw, The Fault in Our Stars is award-winning-author John Green’s most ambitious and heartbreaking work yet, brilliantly exploring the funny, thrilling, and tragic business of being alive and in love.

Opens in theaters on June 6, 2014
TODAY Book Club pick
TIME Magazine’s #1 Fiction Book of 2012
#1 New York Times Bestseller
#1 Wall Street Journal Bestseller
#1 USA Today Bestseller
#1 International Bestseller
#1 Indie Bestseller

! PROCEED WITH CAUTION

! There is some occasional crass language, including swearing.
! There is a sexual encounter between two unmarried teens. Though it is not described explicity, it is portrayed in a positive light (starts on p. 205).
! Parents are generally viewed as being aloof, while the teens are the ones with the grounded, intelligent perspectives.
! The main characters are teens battling various forms of cancer, so death is a frequent discussing topic of the characters.

“ SARA SAYS

(This section contains spoilers. I’m assuming you have read the book at this point, so I won’t attempt to summarize or re-cap the whole book.)

The Fault in Our Stars was a quick read. Though the topic was upsetting, there was enough humor in the book to keep the tone as lighthearted as it could be for a book about kids with cancer.

I appreciated the description of trying to live life, knowing that it will be cut short. What was more difficult to digest was the characters’ complete lack of faith in anything beyond their own existence. They mocked any religious dialogue (though to be fair, it was intentionally cheesy dialogue) and sneered at the Christian version of an after-life.

The most dangerous aspect of this book was the fact that the intelligent characters (the teens) were the ones who had no faith in anything outside of themselves. Teens will identify with the wit and even some wisdom given by Hazel and the others. This book subtly reinforces the cultural stereotype that anyone with half a brain has discounted the existence of a Biblical God. Smart, scientific types are the highest moral creatures, and anyone who has faith must have the reasoning of a slug. The author clearly views faith as being akin to pretty but meaningless sayings cross-stitched while looking through smudged, rose-colored glasses.

This book may bring up questions of mortality in your teen. Some teens have not yet had much experience with death, and this book could be quite unsettling for them. No one likes to think about dying, and as the characters in the book are close in age to your teen, it could be disturbing. This could be a good opportunity to talk about death and resurrection, though, and most importantly, the Gospel. (Tim Challies’s review points out “the contrast between the bleakness of Hazel’s and Augustus’ reality and the hope and joy of the gospel.”)

? DISCUSSION STARTERS

(Since a wide range of girls will be participating, questions are written at differing levels of analysis. Feel free to highlight the questions that would be most appropriate for you and your daughter and best guide the discussion. Also, I try to match the questions with the level and depth of the book.)

General Questions

? Why is the book entitled The Fault in Our Stars?

? Because she has cancer, Hazel is part of a club she never wanted to join (the unofficial Kid With Cancer Club). Are you a part of any club you wish you didn’t belong to (Kid of Divorce, Kid With Special Needs Sibling, etc)?

? Isaac says he would rather be deaf than blind, but he doesn’t get that choice. Would you rather be deaf or blind? Why? ? In the hospital gift shop, the flowers are sprayed with Super Scent (p. 76) so they all smell uniformly pretty. Is the author trying to relay a metaphor here? If so, what could it be?

? Hazel says, “I kind of wanted to be little. I wanted to be like six years old or something” (p. 274). Do you ever wish you could go back to being little for a while? Do you have a favorite memory you would like to relive?

? Augustus says, “The world… is not a wish-granting factory,” which is another way of saying Life’s Not Fair. When have you most felt like life was unfair?

Faith Questions

? How are people of faith portrayed in this book (the support group leader, Augustus’s parents)?

? How do you think Hazel would answer the question, “Why do you have cancer?” How would you answer that question if she asked you? (this might be helpful to the discussion)

? How would you describe the faith of Augustus’s parents?

? What did Augustus mean when he said he feared oblivion (p.12, pg. 168)?

Family Questions

? How are parents viewed? What are some positive and negative aspects to Hazels parents?

? How are dads portrayed in this book? Is it positive or negative?

? What did you like/dislike about Hazel’s relationship with her parents?

? Sometimes when we are wounded, we believe lies that lead us to make vows, which lead to destructive behavior. Can you imagine some lies Peter Van Houten believed about his daughter’s passing that led him to behave as he did?

Life and Death Questions

? Hazel is a vegetarian because she wants to “minimize the number of deaths I am responsible for” (p. 28). Do you agree with her reasoning? If not, do you think there is an other/better reasoning for being a vegetarian?

? What is Hazel’s view of the afterlife (p. 167)? What is Augustus’s view (p. 168)? How does a person’s view of the afterlife affect how they live now?

? When Augustus dies, Hazel writes that “He died after a lengthy battle with human consciousness, a victim – as you will be – of the universe’s need to make and unmake all that is possible (p. 266).” What does she mean by this? Why would you say he died?

Relationship Questions

? What did you take-away from this book about how to treat someone with cancer? Are there clichés people say to you that you wish they’d stop saying?

? Was it wrong for Augustus and Hazel to have sex? Why or why not? Are there wrong things that become okay to do in extenuating circumstances?

? Monica breaks up with Isaac because she can’t handle his impending blindness. We later find out that Augustus stayed with his previous girlfriend because he didn’t want to break up with a girl who had cancer. Who made the better choice?

? Isaac’s definition of true love is that love is keeping the promise to love even if you didn’t understand the promise when you made it (pg. 60-61). Do you agree with his definition? If not, what is your definition of true love?

Questions, Comments, Suggestions? I would love to know how I can make Between the Lines more helpful for you. I would also love your suggestions for our next book! Please leave a comment below. Thanks! ~Sara

Between the Lines

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Welcome to Between the Lines Book Club, your resource for hosting your very own mother/daughter book club. Here is a link to our first book, The Fault in Our Stars!

Why would you want to have a mother/daughter book club? Reading what’s interesting to your teen can be a great opportunity for getting to know her better — and it will give her a chance to know you better, too! Applying your worldview to what’s happening in the secular world can be a great opportunity to help your daughter look at life through a helpful, godly lens. Here are the answers to some more questions you might have:

FAQs (or more like QIMU – Questions I Made Up) :)

Q. What is a Mother/Daughter Book Club?

A. A book club. For mothers. And daughters. (Who comes up with these questions?!) Seriously, it can be whatever you want it to be! You can get a group of moms and daughters together (fair warning: even chatty middle-schoolers have been known to clam up in groups), get coffee with your daughter, or discuss the book with the whole family on a road trip!

Q. Why is this just for mothers and daughters? Why not fathers and sons? What about mothers and sons? What about fathers and daughters?

A. Use this however you want. I’m assuming that mothers and daughters will be most interested in having a book club, since most book clubs are made up of women. But I could be wrong! My husband and I are in a book club together and we both enjoy it. But, I’ll be generally targeting mothers and daughters in my book choices and remarks because that’s what I know best.

Q. I don’t have a mother/daughter. Are you trying to make me feel left out?

A. Definitely not. Hopefully you can use these questions with a friend, teacher, or an aunt/niece or grandmother/granddaughter or neighbor or even someone who is not female (see previous question).

Q. My daughter would never do this with me, right?

A. Don’t be so sure – teens want their parents to want to spend time with them, even though they sometimes act to the contrary. If your daughter really isn’t interested, feel free to read the Sara Says and Discussion Starters and have a casual conversation. It is always valuable to be up on what your kids are reading!

Q. Are there answers to the discussion questions?

A. The questions are written to be open-ended – no right or wrong answers… though there are wrong ways to view the world! Hopefully this will be an opportunity for moms to gently and subtly help teens to look at these books through a solidly Biblical worldview.

Q. What age is Between the Lines geared to?

A. Maturity varies, but generally girls reading these books will be between 13 and 19. I try to align the level of analysis in the discussion questions to the difficulty level of the book.

Q. Are there any rules for the book club?

A. Just to listen to each other, and generally treat each other as you would your friends (i.e., mom – no freaking out about answers; daughter – no freaking out about questions).

Q. I see that your oldest daughter is not yet three years old. Why are you interested in YA literature?

A. I enjoy reading, and this book club is an excuse for me to read YA literature again (not that I ever stopped!). I taught for 7 years; several of those years were spent teaching 6th and 7th grade Reading/Language Arts. I have a minor in English and a Master’s of Education. I need an excuse to read something other than Dr. Suess and Sandra Boynton. So thanks for joining me!

Everything We Never Knew We Wanted

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IMG_5460Our Flower

His purposes will ripen fast,

Unfolding every hour;

The bud may have a bitter taste,

But sweet will be the flower.

-William Cowper

Though I have written honestly about the beginning of this journey (here and here and here), and though I’m prepared to continue to speak openly about the difficulties of dealing with Down syndrome (particularly the medical struggles that have come with it for us), I also want to be sure to share the wondrous parts: the relieving joy of Amelia making it through surgery, the warm weight of her flexible, snuggly body on my chest in church, the heart-swelling pride each time she reaches much-worked-for milestones (smiling! lifting her legs! finding her toes!).

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This little girl is all grace to me. God’s goodness, God’s faithfulness, God’s love, all wrapped up in a tiny, grace-filled package, wrapped with a bow of joy. Never before have I felt such contented comfort in having my sins revealed to me, hot shame giving way to a warm release of forgiveness and freedom. My heart is stretching and growing –little delicate sprouts shooting up in places I didn’t know existed. Tenderness for those with disabilities, sensitivity to those in difficult circumstances – the full benefit of the doubt being given at times when I used to cast judgment. The growth is painful, still, but there is an otherworldly peace and deep satisfaction in knowing that the pruning shears are being wielded by a master; I feel as grateful as an old, wise tree would, knowing that the pruning was for her good growth.

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Though I still can’t completely picture what our future looks like with her (when will she have her next surgery? where will she go to school?), I know I cannot picture life without our Amelia Kate! She has stolen our hearts, and we are grateful to have been robbed.

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How has she stolen our hearts? Amelia’s soul is kind. She has time for the person holding her. She wants to talk and smile and connect. Even though she will often decline to reach for a toy, Amelia will always reach for hands and arms and pull them close to her, making eye contact the whole time so that you’re sure it’s you she’s after.

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This girl. She is everything we never knew we wanted. Showing me with tangible cuddles and kissable cheeks that “the clouds ye so much dread are big with mercy and will break in blessings on your head.”

Be sure to follow Amelia’s Page on Facebook!

God Doesn’t Give Us More Than We Can Handle… Right?

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Spending another night in the hospital, with numerous, tedious tests being performed on my 5-month-old, was not exactly how I would’ve chosen to ring in the new year. We were hoping to leave ER visits and hospital admissions in 2013… instead, this was our fourth long-term hospital stay (fifth if you include my c-section in July).

People in a difficult position like mine often hear the phrase, “God will never give you more than you can handle.” Though I don’t recall anyone specific saying this to me, the Christian blogosphere has been all abuzz about this phrase. The current trend is to take a battering ram to the sentiment and (indirectly) to those who dare to let it pass their lips. Given how many articles I’ve seen about it, it seems Christians everywhere are looping this phrase into every conversation they have with a person who is hurting.

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Why all the tension? It’s understandable on both sides. Someone you know, we’ll call him Jack, is going through a difficult time. He is trying to be vulnerable with his Christian community, and people around him know what’s going on and want to be helpful. After sharing his struggle he hears:

1. “God doesn’t give you more than you can handle… he must have given this situation to YOU because he knew YOU would shine. Betsy-Fretsy down the street, now she would’ve fallen apart under these circumstances, but YOU, you are strong.” At least the person saying this is giving a compliment! But Jack doesn’t feel strong, and he certainly doesn’t want to think that God has singled him out for some sort of special refining.

2. “God doesn’t give you more than you can handle. Remember, when God closes a door, he opens a window!” Jack isn’t even sure what this means. Why wouldn’t God just open another door for him? Wouldn’t the sentiment be more encouraging the other way around… wouldn’t Jack rather have a God who closes windows but opens doors? And why does God have poor Jack trapped in a house?!?

3.“God doesn’t give you more than you can handle, but he will load you up with all manner of burdens, save for that straw that would break your back.” Assigning ill motives to God, anticipating that his goal is to angrily pile on as much as he can, is certainly not helpful to someone in Jack’s situation.

4. “God doesn’t give you more than you can handle” (said in a dismissive tone after Jack has bared his soul). People who say this bluntly, after a heartfelt revelation, seem to be begging Jack to stop talking about anything negative because they are uncomfortable with displays of emotion, or they are subconsciously nervous about Jack’s bad luck rubbing off on them, but they want to sound holy while asking him to shut up.

5. “God doesn’t give you more than you can handle… I mean, at least you’re not deaf AND blind. At least you’re not being used for target practice by hopeful Olympic archers. At least you’re not six feet under… and alive!” The person with the million at leasts would do well to learn the art of empathizing rather than sympathizing (this video provides a short, fun explanation of the difference). Jack just wants someone to acknowledge his pain. He knows that others are in more difficult situations in one way or another. He doesn’t, however, want his pain to be minimized; he just wants someone to be bummed out with him from time to time.

Instead of climbing down into the depths with someone who’s hurting, and lighting a candle, some Christians may unwittingly shine down a harsh bright flashlight in the person’s face with their exclamation of “God doesn’t give you more than you can handle.” It reminds me of the Proverb: “Whoever blesses his neighbor with a loud voice, rising early in the morning, will be counted as cursing” (ESV).

Now that we’ve seen how people like Jack might perceive this phrase, let’s look at how someone (we’ll call our someone Jill) might mean it when she says it to someone like her friend Jack. Jill went through a difficult time a couple years ago, and an older lady at church promised her (in a kind tone at an appropriate time) that God wouldn’t give her more than she could handle. This meant a lot to Jill, and she clung to that phrase, repeating it to herself as a mantra. Even though she doesn’t always feel comfortable, she tries to take a risk by telling others like Jack who are hurting this phrase because it meant so much to her. Here are some ways the Jills out there might be intending this phrase to be taken:

1. “God doesn’t give you more than you can handle… he will give you the grace and strength you need for each day.” Jill knows this isn’t Scripture, exactly, but she does know the Bible verse about his mercies being new every morning. Left on her own, Jill could handle nothing, but she knows in her heart that God will equip her for whatever comes her way.

2. “God doesn’t give you more than you can handle… he who began a good work in you will carry it on to completion!” In Jill’s mind, God giving her more than she could handle would mean God giving her something that would make her renounce her faith. She believes that God will preserve Jack and keep him. In the biblical account, God certainly put a lot on Job’s plate, and Satan wanted him to curse God and die, but God could not allow that. It was not an interminable affliction.

3. “God doesn’t give you more than you can handle… he is building you up, not tearing you down. God only gives circumstances that are working toward your sanctification, not your destruction.” Jill has learned that God will not let anything befall her that won’t be used for her greater good and God’s greater glory. The goal isn’t to test you, to break you down with so many burdens as to determine your breaking point. The goal is to build you up.

4. “God doesn’t give you more than you can handle… though it may seem so at the time.” Jill certainly felt like God was breaking her. In a particularly dark moment, she lay down and felt certain that she would never get up, but she did get up, and she is still praising God – more now than she did before that awful moment. Voices of the martyrs would certainly not join a chorus proclaiming that God gave them more than they could handle. They would gloriously affirm that God preserved them, that God made beauty from the ash-seeds of their faith.

5. “God doesn’t give you more than you can handle.” Jill sometimes isn’t quite sure what she even means by this statement. She just knows that she feels tenderly toward hurting people, and she desperately wants to provide some comfort to them. She’s not always sure of the right thing to say, so sometimes she falls back on this because it’s what she knows.

In the past few months, like Jack, I have again felt like I have more than I can handle. I feel like my daily schedule is going to crush me: my life is a constant logistical frustration because of my daughter’s demanding medical needs. Emotionally I’m spent, trying to provide a reasonable level of care and attention to my family.

But, like Jill, I do take comfort in the fact that I will not be given more than I can handle, that I will still be praising God when this is all over. I understand why people hate this phrase; it can be badly used as an empty platitude, tossed at our hurting neighbors’ heads like a brightly-colored, obnoxious beach ball. But, on the other hand, I am one who finds comfort in the deep truth that we should let settle in our souls: A good and powerful God will not give us more than he will lovingly help us to bear. As I welcome the unknowns of 2014, I’m grateful for the reminder that I should carefully consider what I say to other hurting people, and that even if the words are not well-chosen, I should graciously accept what others offer to me.

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

2 Corinthians 4:7-9 (NIV)

Why Does my Daughter Have Down Syndrome?

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To read about the beginning of our journey, read here and here.

I keep writing about my first moment with Amelia because it was such a life-changing, defining moment. There was before and there is after. There was once a pregnant woman with a boy and girl, children whom she would refer to as “perfect.” Then there was a woman, no longer pregnant, staring into the face of a new baby, searching desperately for any familiarity, for anything to hold on to that would create feelings of love. This baby she couldn’t help but refer to as “broken,” choking over and over on the heavy word and the heavier reality. A perfect boy and girl, and a broken baby. Two rights, and a wrong.

And in the early days, that was how I consoled myself: Well, I have two amazing children; I can deal with one sub-par child. I can take my lumps: shall we accept the good from God and not the bad? I felt strong in those moments, and noble to some extent. Two out of three’s not too bad, you know.

But I knew, in time (and probably from the beginning), that it is not fair to view the third child as the mistake, as the fly in the family ointment. She’s not our consolation prize. So why? Did the God who never sleeps nod off when knitting Amelia together? A slip of his righteous right hand and oops – an extra chromosome? Or were his arms too short to save – Satan swooped in and interfered and my short-armed God just reached out hopelessly, weeping as he tried to stop his enemy and failed?

I read an article about suffering by a mother whose twin daughters had died shortly after being born with birth defects. Her disturbingly simplistic conclusion is that birth defects are just a result of the Fall: God allowed us to choose to sin, and we now bear the consequences of that first sin. She states her only hope: “For many of us who have had [sic] lost a child to birth defects or live with a child with physical problems, sometimes we can only take comfort in the hope that one day we will hold our children, free from pain and made completely whole in the presence of God.” The author no longer has her children on Earth, so it makes sense that she puts all her hope for her children in their heavenly home. But what am I supposed to say when I look into Amelia’s face, and she wants to know why she’s different? “Sorry, sweetie, your Down syndrome is a terrible consequence for sin, but don’t worry – all will be well when you die”? This clearly misses the mark. When people asked Jesus why a man was born blind, he didn’t say, “Because of the Fall… too bad about that…” No. Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” (John 9, ESV) God has a purpose in all things, even bad things that were not part of pre-fall creation.

On the other hand, I disagree with those who say that God intentionally creates children with special needs to endure pain and suffering, to be little “angels” to the rest of us. So what’s the answer? Why does my daughter have Down syndrome? Why does she have a severe, congenital heart defect?

My first mistake was in thinking my other children are perfect. They may look perfect to me, but I know them well enough to know that they are, in fact, broken. They are sinful and left crushed by the Fall. Their brokenness requires a Savior. Amelia’s physical brokenness is an outward manifestation of the Fall, but I along with my “perfect” children are more spiritually broken than any physical disability could display.

Yes, Amelia’s physical issues are a result of the Fall. I don’t believe that she will have Down syndrome in heaven. BUT, and this has been so crucial to my processing of this situation, God allowed her to have Down syndrome for our good and his glory. Amelia having Down syndrome was God’s absolute, best plan for her life and for the lives of those who will be in relationship with her. Nothing, absolutely nothing happens in this world that is not within God’s glorious and holy will. God allowed his Son to be killed, the worst possible sin ever to be committed. If he controlled and wielded that sin to accomplish the most beautiful sacrifice and atonement (and he did), then any other result of the Fall can be seen as being allowed and used well by our heavenly Father. That includes my daughter’s difficulties.

Yes, Amelia will be physically and spiritually whole in Heaven, as we all will be. But our physical and emotional difficulties in life are a gift to us from our Creator who knows our souls better than we know them ourselves. God will use the difficulties to enrich our joy. I would not choose for Amelia to have a disability, but I can honestly thank God (though sometimes through tears) for the Down syndrome because I know that it is a loving and gracious gift. I’m grateful that, in this case, the challenges came to us in an adorable, kissable little package – I pray we will parent Amelia with the same grace and love that is daily given to us by our great God!

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New Thoughts About Old St. Nick

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 Last December, I posted this blog about celebrating Christmas… thought I’d repost it now, before the Christmas season really kicks off this year! Please leave a comment with your best ideas for keeping Jesus central in your family’s Christmas.

I have some serious issues with Santa Claus, and they’re not the issues you might think. Yes, there’s the whole lying to my kids thing, which bothers me. But we pretend a lot at our house, and I could play up Santa while truthfully telling my kids he’s make-believe. Of course, there’s also the whole Santa and the elves issue: does he pay them? Does he give them pills to keep them small? Are the elves indentured servants of some kind? And, no, St. Nick hasn’t yet received the message that cookies are a “sometimes food,” but I certainly can’t pass judgment on that one! Also, Santa watching my children when they’re sleeping and knowing when they’re awake? Sounds more like a creepy stalker than a benevolent gifter. But, I think Mr. Claus has bigger issues than being a fictional, slave-keeping, obese, creepy, character… the biggest problems are for the kids who see past all these potential problems and think Santa’s a good and generous man. Allow me to unwrap (sorry, I couldn’t resist) my reasoning:

He Looks So Innocent!

He Looks So Innocent!

  1. The first issue I have with Santa is that he’s terribly mean to poor children. This was brought home to me when I taught in a very poor community, with students who didn’t receive much, if anything, for Christmas. From a kid’s perspective, the rich kids get gifts all year round: they have plenty of food and new clothes and school supplies. Wouldn’t it make sense for Santa to give poor kids a little more on Christmas to compensate? Apparently not. Kind, jolly old St. Nick gives poor kids the shaft on Christmas, reinforcing the societal message that children without means are less valuable than those who have plenty. Even Santa recognizes that the poor kids are worth less. For kids who aren’t poor, the disparity can still feel personal. I remember being jealous of my closest friend in elementary school, who always got the BEST (and most) Christmas presents. I knew they were from her parents, and I knew it wasn’t because they loved her any more than my parents loved me. I just had plain old jealousy to contend with, and yet I can still taste it. I can’t imagine how this would’ve affected my psyche if I had tried hard to be extra good and was still deemed “naughtier” than my best friend.
  2. This leads to my second point… Santa’s method of determining who’s naughty and who’s nice involves assigning monetary worth to children based on how good or bad they are. Nevermind that presents are not actually doled out according to Santa’s fictitious lists; the message prevails: if you do more good things than bad things, you win. Even if your heart was naughty and you were only doing good things to get on the Nice List, you still win. And if you tipped the scale the other way, well, your worth, my friend, is equivalent to a lump of coal. This is particularly problematic for Christian children, who are presumably being taught that their worth is in Christ, and that it doesn’t matter how many bad things they’ve done. Jesus has already taken the lump of coal as His and given them all the presents HE got for being perfect. Those gifts belong to our children, no matter which list they fall on this year. Christian parents should be reiterating that no matter how many good things their children do, they will be loved by God no more and no less than they already are!
  3. Noel Piper writes here about how the association between God and Santa can be problematic for kids who are already struggling to understand the abstract idea of God. Wait. Did I say kids? I think this association runs deep in the fabric of our society and can trip up even us adults, who also struggle to understand God. This article is a great read, if you have time, and really spring-boarded a lot of my thinking. Basically, Piper says that Santa and God share too many attributes for us not to make the connection, however subconsciously (each watches us and knows what we’re doing and has the ability to grant “wishes”/answer prayers, etc).
  4. Finally, I come back to the main reason my parents gave for not “doing Santa” with us growing up (besides not seeing how they could do it without lying): gratitude. My parents wanted us to see the people giving us gifts, recognize that they had sacrificed to provide us with such nice things, and thank them kindly and respectfully. Basically, they wanted credit to go to those who’d so thoughtfully chosen gifts for us. Has any child who’s ever written a Dear Santa Wish List ever followed up by sending a Dear Santa Thank You to the North Pole? Also, my parents wanted to nurture the parent-child relationship, and they knew that a fun Christmas morning put a lot of emotional cash in the bank (which had to be withdrawn on the mornings when we got yelled at for missing the bus or fighting over the bathroom). Though they showed us all year that they loved us, the mountain of gifts under the tree on Christmas morning was physical proof that our normally frugal parents loved us with a crazy, wild-abandon love. They were tangibly demonstrating how God loves us and gives excessively and lavishly to us.
  5. So #4 was my last issue I have with Santa. But I have to include #5 to cover the opportunity cost of such celebrations: Celebrating Santa and his magical gift-giving is time that could be spent talking about God’s miraculous, eternal gift-giving. Listening to this sermon on the theology behind gift-giving was an amazing, eye-opening experience for me. God gave his Son, and will give us all things out of his glorious riches. When we celebrate Christmas, we celebrate the birth of Christ by giving gifts. But if it’s Jesus’ birthday, shouldn’t we be giving Jesus the presents? Yes. But the Bible teaches that if we give to our neighbors, we give to Jesus. So we should lavishly be gifting our neighbors, including our closest ones, our spouses and children. If Santa’s giving the gifts, how does Jesus get the glory?

So while I don’t think Santa is an anagram for Satan (okay, well technically it is, but I don’t think it matters a flying flip), I do think that we should all consider how central a role we’re going to give Santa this Christmas. At the same time, I hope we’ll all be gracious to others who see things differently… that way we can all stay on the Nice List!

Frayed Edges of Guilt

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For some background on this post, click here.

This is not the story I long for it to be: the story of instantly falling in love with your daughter, of seldom having a negative thought about her Down syndrome. The story in which you feel joy and gratitude for any baby you get to hold in your arms.

My own story is frayed around the edges by the guilt that comes with every recollection of my daughter’s birth.

She didn’t cry when she was born. There was only the sound of a quiet flurry of activity, the hushed and restrained voices of worried doctors. Then came a cry so pitiful it only enhanced my fears.

Finally, they brought her over for me to see briefly as I lay on the operating table, and my heart sank a thousand miles. While I expected to see a reassuringly familiar face, I saw one with unfamiliar but tell-tale features, ones that made this little girl seem more like a stranger than like a member of my family. This single, passing glance is how I received the news that my daughter has Down syndrome.

They whisked my new baby and my husband away after I awkwardly tried to kiss her face though my arms were pinned down. I was alone with the news that my baby’s features had announced to me. The doctors and nurses tried so hard to be cheery, but their strained smiles and chirpy reassurances betrayed their suspicions. Tears dripped down and off my face until a nurse took on the awkwardly intimate job of blotting away my tears.

After surgery, I was put in an isolated post-op room where I was tenderly monitored and cared for. I am normally reserved in showing raw emotion, but silent tears were freely flowing even though I was surrounded by strangers. I felt such a deep and quiet grief. There was no sobbing, no railing against the heavens, just a silent, iron sadness that sank deeper when my husband entered the room and his eyes told me as clearly as Amelia’s features had that our lives had been changed forever.

The sorrow was a heavy anchor that caught all our expectations of a happy birth and a healthy baby and dragged them to the bottom of our souls. Eric and I sat in silence for hours. We were alone because our daughter arrived early and wasn’t on anyone’s calendar.  None of this was according to our plans. We felt God’s sustaining presence, and we didn’t doubt his care of us or good plans for us, but that didn’t change the fact that we felt emotionally devastated.

After a long while, our shameful thoughts awkwardly flopped out like fish desperate to escape a net, and indeed, we were desperate for them to escape and to be far from us. You don’t know how sinful you are until you realize the terrible thoughts that can be churned up in you about your own child.

When Amelia was finally brought to us, I thought my feelings of disappointment would dissipate into a mist of love and tender feelings. Instead, I struggled to see through my daughter’s appearance to who she was. I, the teacher who was able to love the most difficult students, was struggling to find loving feelings toward the innocent baby in my arms. Fear and shame clamored for top billing in my hurting heart.

I wanted to turn back time. I wanted to un-know that my life was changed forever because of what I had learned in an instant. I wanted to go back to our family vacation when I was blissfully pregnant with our third. And I wanted to be a better mother than the one who was dissatisfied with her own baby.

Three months later, this journey continues. Though I’ve come a good distance, I’m not yet as joyful in mothering as I desire to be. It might seem logical that as I get to know Amelia better (she’s becoming a fighter I’m so proud of, she has the sweetest disposition, and she has a darling smile), that I would be in a better place and feel less guilty. Ironically, the opposite is true. The more I adore her, the more guilty I feel that I would still take away her extra chromosome if I could. Time, and Amelia showing her personality, are helping me enjoy this girl who so fully deserves her mother’s pride. But, there are still conflicting forces at work.

I don’t have advice or answers. I have only transparency so that others who experience confusion and hurt, even while believing in a loving God, will know that they are not alone.

We’ve come a long way since this post! Click here to see pictures and read about our sweet Amelia!

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Join the Club

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So . . . clearly I’ve taken a bit of a hiatus from blogging. My reason is that I’ve been adjusting to life with three children, and specifically, to the diagnosis of Trisomy 21, or Down syndrome, for my baby. I’ve spent three of the last thirteen weeks in a hospital with my daughter, who also has a severe heart defect requiring open heart surgery next month. My days have been filled with things like inserting feeding tubes, learning new medical terminology, and setting up appointments with more specialists than I ever imagined a newborn would need.

I’ve actually done some writing during these three months since Amelia joined our family, but I have been hesitant to share for a few reasons . . .

One is that I’m new to the special needs community, and I am worried about offending the caring and welcoming parents who have reached out to me. They are further along in this journey and wiser; I don’t want to say something ignorant, even though I’m sure these folks would be most gracious.

Also, I don’t want to put things out there that don’t respect the gift of my daughter. Emotionally, I’m not yet where others have promised I will be, enjoying this whole adventure. I trust those who say I will get there, but right now I’m seeing more of the challenges than the rewards. I love Amelia, but, honestly, I’ve had some ugly thoughts that I’m not sure should be shared.

Lastly, I want to be genuine in what I share in my blog posts, and I hope they are meaningful to others in some way. I have been in a world of disappointment, grief, and uncertainty, with my fears being sometimes for Amelia, and sometimes for me and the rest of our family. But I have also experienced much grace and kindness and felt blessed as Amelia’s smile has charmed me. My feelings can be conflicting, and I’m finding that grief does not happen in a straight line. My perspective today may not still be true by the time I hit the button that publishes my thoughts.

That said, I want to get back to writing, and so, with some uncertainty, I will get started by sharing some of the basics for those who have expressed concern and been interested in our new family member.

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Amelia was diagnosed with a complete AV canal defect in utero. At that time, in my fifth month of pregnancy, my husband Eric and I were also told that our baby could have numerous chromosomal disorders, including Down syndrome. We were reeling. Doctors were saying unthinkable things about options that dishonored our child. My parents arrived from Ohio the next day to allow Eric and I to process this while they watched Weston (3 ½) and Madelyn (almost 2). But, soon after, I was given the results of an advanced blood test. According to this highly accurate test, we were not carrying a child with Trisomy 21. (I am now being written up in a medical journal as possibly the first person whom this test has failed.)

The day of Amelia’s birth was two weeks earlier than the date of my scheduled c-section. It was just Eric and I who first saw our daughter and realized we had been inducted into a club we never asked to join. My next few blog posts will share some of those dark moments in the hospital. Though you may appreciate some new insights about life in the I Have a Special Needs Child club, I can’t guarantee you will like what you read. Some of you may stop in, look around, and leave feeling grateful to have been denied membership. Others of you will wish you could join this club instead of your own, which has an even more painful initiation.

I’m still learning about the club myself. I trust God and His ways that are clearly higher than mine, but on most days, I still want to trade my membership card for a new one that reads: I Have a Typical Baby. So I will be honest about my struggles. But, I will not write as one who has no hope:  I anticipate gaining more appreciation as I explore all the aspects of this club; I will share that, too. And though I have, to some extent, been living under a rock, I haven’t completely missed the appalling, entertaining, and interesting things going on in the rest of the world, so I will be blogging my observations of those soon as well. More to come…

For another post about Amelia’s birth, click here.

Guarantees

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Amelia is performing acrobatics in my womb, moving the computer as I attempt to type. She is so active that she was deemed a “crazy baby” by my OB, as were my other two children when they were in utero.  She responds to music more than my other two did, and she likes to kick and punch so much that it’s hard to believe that there’s something wrong with her body.

Some days I forget that there’s an issue, at least on a conscious level. I’m busy with my two older babies, and I imagine that Amelia will be just like her siblings, running and playing with them before I know it.

Other days, I feel like a dark cloud has settled over me, dampening my mood and making me ethereally sad. I’m not sure what is causing this slight depression: is it the possibility of Down’s Syndrome (or possibly DiGeorge Syndrome*)? Is it the fact that Amelia has a heart defect and that I will have to somehow emotionally survive my baby’s open-heart surgery while still effectively parenting my older children? Or is it just that the uncertainty of life is looking me squarely in the face, reminding me that I have been given no guarantee of delightful circumstances? Life is uncertain, and Amelia’s issues remind me of the fragility of the lives of all my children, of my husband, of myself.

There are no warranties for life circumstances. I don’t get my money back if things don’t turn out the way I want. I don’t get to do this over again. I can’t retrieve the things that have been and will be lost.

I know that God is good, and I know He is sovereign, yet I often struggle to reconcile the two. I’m sure you’ve felt the same way at times. So what are we guaranteed in this life?

We are guaranteed a Mediator who has suffered our tortuous life with His soul gloriously intact, with strength to command the waters and the tenderness of a seeking shepherd. We are guaranteed a Comforter to intercede for us when our frail spirits fail us. We are guaranteed glorious eternal life in the presence of our extended family, and endless time to bask in the light of the risen Lamb, and peace that passes understanding until that time.

We are guaranteed that in this life our temptations will not exceed what we can bear. Satan can scar us, but he cannot have us. Death ceases to be an ending but is a doorway to new life. We are guaranteed no condemnation no matter how we fail to weather our time on Earth. We are guaranteed an inheritance, a spirit of adoption. We are guaranteed rescue. We are guaranteed and end to the pain. No more loss or separation or heartache.

We are guaranteed an everlasting, glorious, satisfying relationship with the Creator and lover of our souls.

These guarantees far outweigh the surety of a healthy baby. They are more lasting and satisfying than pleasant circumstances. So as I cry over the realization that my perfect life plan is not coming to fruition, I remind myself of these promises. My hope is not in life going as I desire, but in my loving God and Savior.

*Here’s an update on Amelia:

  • Amelia’s growth is right on-track; she’s even slightly above average for weight. She has no physical indications of a chromosomal disorder other than the heart defect.
  • We took a blood test that is fairly new to the market (Verifi). The results indicated a low possibility of Down’s Syndrome, but the results don’t include our chances of Mosaic Down’s, so there’s still a possibility of that. The chances of Trisomy 13 or 18 at this point are very slim based on the fact that Amelia has no other indicators of these. She could possibly have DiGeorge Syndrome, but that also seems unlikely given a lack of indicators other than a heart issue.
  • When Amelia is born, it is unlikely that we will know right away if she has a chromosomal disorder, because they can already tell that she doesn’t look like she has an issue. So when she’s born, they will do genetic testing and we will get the results after a week or so.
  • Our cardiologist is hopeful that Amelia will be asymptomatic at birth. Best case scenario is that she won’t need surgery until she’s 3 or 4 years old. Worst case is that she will have trouble breathing (as her lungs could fill with blood from a malfunctioning heart) and a difficult time eating and will need to go on medication soon after birth, which would move her surgery up to when she’s only 3 or 4 months old.
  • We are so grateful for the prayers of friends, family, and friends-by-proxy. We even got a card signed by every member of a church in Ohio, letting us know that they are praying for our daughter. We are so humbled by the prayers (and the time represented by such prayers) and by the offers to help after Amelia’s birth. We feel immensely and richly blessed to be part of the family of God!

 

Why You Should NOT Ask Me to Share on Father’s Day

For Father’s Day this year, I asked one of my parents to guest post… no, not my dad (though he would have sage advice to offer, the thought of writing a blog post would give him hives!). My mom wrote this piece to share with friends of the Women’s Resource Center where she is the director. 

My husband Mike, slated to open our Community Group time at church, asked me to share my perspective on Father’s Day this Sunday morning. I responded that I couldn’t think of a less likely candidate for this assignment: From the time I can remember, I have felt awkward at best on the day designated to celebrate dads. While the other kids in my grade school were happily making cards for their fathers (which in the 1960s almost everyone in my neighborhood had), I wondered if one of my grandfathers or uncles in other states would like to receive a crayoned card in the mail.

I was just two, and my brother one week old, when my father piloted a small plane to a ski resort. He took along a friend and one of that man’s friends, excited to enjoy a day of skiing in Connecticut. My dad’s mother from Pittsburgh was at our house, so the women encouraged my dad to be gone while they tended to the kids (things were very different in 1958!). My 25-year-old mom started looking for her husband to be home that evening, but a violent snowstorm had blown in unexpectedly. Hours turned into days, and days into weeks as the Air Force fliers from Mitchell Field near our Long Island home searched for the plane and its passengers. Six months later, on the day before their fifth wedding anniversary, my father’s body washed up on a shore of the Long Island Sound. My mother, who did not remarry, was reshaped by this tragic time in her life and, though she did many things wonderfully well, she did not intentionally find role models for me like she did for my brother. Such were the times.

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This doesn’t sound like a very enjoyable story to share during our class on a nice holiday honoring dads, now does it?!!

But my husband persisted. He asked me to challenge our class members like I do our young, single mothers who come looking for practical, emotional, and spiritual help at Women’s Resource Center. As I chat with these women, I encourage them to find healthy and consistent male role models for their children. Often, in our experience at WRC, the father decides to walk away from his “baby-mama” and, because the women themselves were raised by single moms, they don’t see it as a big deal. One told me: “Oh, come on. No one has a father these days. It doesn’t matter.”

But, it does matter. Just because I would no longer be alone in my unease at card-making time, it doesn’t change the fact that every little girl needs a daddy. I saw that lived out later in my life as Mike fathered our five daughters with unconditional love. And I see it in the home of my oldest daughter where her husband is an outstanding daddy to their adored little boy and girl. Though my mother tried her best, a mom is just not a dad. Children need both, to fill the gaps.

So what I will tell our class, and what I tell our single moms at WRC, is this: Dads are important. Kids with dads are four times more likely to avoid poverty, they experience better health as infants, they are less aggressive, and they are significantly less likely to be incarcerated. They are less likely to experience teen pregnancy, marry before graduating from high school, abuse alcohol and other drugs, and to be obese. They are more likely to receive mostly A’s in school (The National Fatherhood Initiative). Moreover, fathers are the representation of a caring and approachable God to their children from an early age.

If you are raising a child who does not have a dad in the home, please do the best you can to find a close substitute. Look to your brother, an uncle, your own dad, a good friend, or a church or agency for a mentor for your daughter (as well as for your son, of course). If you have an intact family, invite those who do not, to participate in life with you. You may be surprised at how what you think is mundane is meaningful to others. I remember the time one of our daughters’ friends sat down for a simple dinner with us. She looked at all the place settings and people at the table and said: “So this is a ‘dinner table.’ I thought this just happened on T.V.”

And I have an early memory of watching a couple resolve a conflict by leaving their kids inside while they walked around the perimeter of their house talking back-and-forth. It was so ordinary to them, she in her pink foam curlers, he just home from his nightly commute from New York City, but it was significant to me as I observed how compromise in marriage worked its way. I was watchful because I honestly did not know how men and women related on a daily basis in a home environment; I wish my mother would have known to be purposeful about inserting me into family situations that included fathers. I wish the books written then would have told her to look for a great, godly man to make her daughter feel significant in the world. Making a girl feel special is special. If it can’t be done by a father, I would encourage others to mimic it to the best of their ability by making sure she is included in the big and small joys of a two-parent home.

So, that’s my unusual Father’s Day charge to those who will be attending the Community Group at my church tomorrow. Not exactly up to Hallmark’s sweet standard, but my hope is that it may cause some to be more aware of all the fatherless girls who would benefit from some men and families in our Christian community stepping up to fill the gap.

And I do wish all of you a most blessed Father’s Day.

Laurie (Sara’s Mom)

 

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