Category: Family

The hard life of living with a Down syndrome child

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My precious niece Amelia is popular with my two children.
My precious niece Amelia is popular with my two children and all of our family.

The Washington Post did a front-page story this past Sunday on what it’s like to live with and raise a child with Down syndrome. For those who haven’t been through it, it is an eye-opening look into what is a very difficult life.

Articles like this, of course, are being written because of the attention that Alaska Gov. Sarah Palin has brought to families who have Down syndrome children. These children are all around us, but, as one of the parents in the story says: “Before, kids would stare, but not adults. Everybody’s curious: ‘What’s it like to have a kid with Down syndrome?’ ”

What’s it like for these families is put this way in the article:

Amelia is a blessing to all of our family and to those who meet her.
Amelia is a blessing to all of our family and to those who meet her.

They spend more time in doctors’ offices than most parents. They endure stares from strangers but feel as if they and their children are invisible. They often find themselves fighting for their kids, not just raising them. Earlier, and perhaps more dramatically, they wrestle with the complex emotions that come from knowing that a child might never fulfill the lofty dreams that a parent often envisions before the child’s birth.

But the parents of children who have Down syndrome say that raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.

In our family, we have a beautiful gift from God named Amelia. She was born with Down syndrome to my wife’s brother and his wife to join their other three children. At age 2 she is still learning to stand on her own and maybe utters a handful of words, but she is world class in drawing tenderness from anyone who encounters her. It is a hard life for her parents as she has needs that press daily on them and her family, but I don’t doubt for a second that they love her every bit as much as her older brothers and sister.

One of the parents in the Washington Post article recounts an encounter with her sister that is a cruel reminder of how many in our society think the cruelest thoughts when it comes to Down syndrome children:

“My sister looked at me and said, ‘Why didn’t you abort her?’ ” Marsili recalled. “I said, ‘What? Because we love her, and she’s my baby, and we love her!’ ‘But you knew,’ my sister said. . . . It was pretty shocking. Even people that close to me.”

It is a dangerous place we’re at when we consider killing to be a solution for children who’s abilities are diminished. If it takes someone like Sarah Palin entering the spotlight for us to expose this kind of thinking — and rebuke it — then I think it is a good thing.

FOR FURTHER INFORMATION:

National Association for Down Syndrome

National Down Syndrome Society

HT: Wesley J. Smith

Why vote for Sarah Palin?

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There are many times you can end up in a place and wonder how you got there. I think that kind of experience has happened for many who have grown up as Democrats but call themselves pro-life. In an essay at First Things, Suann Therese Maier lays out her journey that has led to her decision to vote for John McCain and Sarah Palin this November. Of note:

I remember my father, a successful young Chicago attorney, telling me why the Democratic party was the party of “our people,” and why so many Catholics were Democrats, and why the party stood for the little guy, the poor and the defenseless. I remember listening as a young girl in our kitchen as Saul Alinsky organized my parents’ Catholic friends on racial and economic issues in our Chicago living room. And I remember the night in 1992 when Pennsylvania’s governor, Robert Casey, was denied a chance to talk against abortion at the Democratic national convention.

I will vote for Sarah Palin because Roe v. Wade is bad law, and it needs to fall. I don’t doubt the intelligence and character of men like Doug Kmiec, the younger Bob Casey, and others who sympathize with the Obama campaign. But I do doubt their judgment. At the end of the day, the Democratic party in 2008 has conceded nothing to pro-life Democrats. The fact that Sen. Obama listens respectfully to pro-lifers without calling them reactionary dunces does not constitute progress. Results and behavior are what matter. On both those counts, the party has again failed to show any real sensitivity to pro-life concerns. In that light, high profile Catholics who support Obama are simply rationalizing their surrender on Roe.

Finally, I will vote for Sarah Palin, not because I’ve left the Democratic party of my youth and young adulthood, but because that party has left me. In fact, it no longer exists. And no amount of elegant speaking, exciting choreography, and moral alibis will bring it back.

Sarah Palin and her job as mother

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Gov. Sarah Palin's job performance as mother is being scrutinized.
Gov. Sarah Palin's job performance as a mother has come under scrutiny.

Albert Mohler weighs in on the uncomfortable announcement that Alaska Gov. Sarah Palin’s 17-year-old daughter Bristol is five months pregnant:

The Palin family asked to be left to deal with this privately, an understandable impulse for any family.  But this isn’t just any family at the present.  The moment Sen. John McCain announced Gov. Palin as his running mate, the entire Palin family became a public issue.  This was amplified by the fact that the entire Palin family (except for the oldest son, Track, soon headed for deployment in Iraq) stood there before the public.

One central feature of the public introduction to the Palins was the presence of Trig, the 4-month-old baby boy who is the couple’s fifth child.  Trig was diagnosed with Down syndrome prior to his birth, and the Palins translated their pro-life beliefs into a beautiful portrait of human dignity.  As the couple said, they never even considered aborting the baby, but considered him a gift from God.

Now there is another gift — this time in the form of a pregnant daughter and a child conceived outside of marriage.  The Palins spoke of their pride in the fact that their daughter would keep her baby and marry the father.  Once again, the Palin family chooses life over death, birth over abortion, when aborting the baby would be justified by many and considered the easy way out of an embarrassing situation.  Yes, that baby is a gift, as is every single living human being, born and unborn.

But the entire nation felt the awkwardness of the situation, and even part of the embarrassment.  Yes, as Steve Schmidt said, “Life happens,” but not always like this.  And Mark Salter is certainly correct in describing the situation as “an American family.”  Still, this is not the script many families would choose — especially evangelical families who had been most encouraged by Gov. Palin’s choice as Sen. McCain’s running mate.

And, as Gov. Palin is scrutinized far and wide following this announcement, Mohler raises a concern that many of us have:

A more interesting angle on this story has to do with the question of motherhood.  In this case it is the Governor as mother that is the issue, rather than the daughter.  As Jodi Kantor and Rachel L. Swarns of The New York Times frame the issue:

When Gov. Sarah Palin of Alaska was introduced as a vice-presidential pick, she was presented as a magnet for female voters, the epitome of everymom appeal.

But since then, as mothers across the country supervise the season’s final water fights and pack book bags, some have voiced the kind of doubts that few male pundits have dared raise on television. With five children, including an infant with Down syndrome and, as the country learned Monday, a pregnant 17-year-old, Ms. Palin has set off a fierce argument among women about whether there are enough hours in the day for her to take on the vice presidency, and whether she is right to try.

It’s the Mommy Wars: Special Campaign Edition. But this time the battle lines are drawn inside out, with social conservatives, usually staunch advocates for stay-at-home motherhood, mostly defending her, while some others, including plenty of working mothers, worry that she is taking on too much.

I was asked about this on Friday in an interview with Stephanie Simon of The Wall Street Journal.  As that paper reported:

So Ms. Palin’s decision to accept the nomination for vice president just four months after the birth of her disabled son gave pause to a few conservatives. But just for a moment.

“If I were her pastor, I’d be very concerned for her and her family,” Mr. Mohler said. “But it looks as though she’s found a way to integrate it all in a way that works.”

Well, I would be even more concerned now.  Do I believe that a woman can serve well in the office of Vice President of the United States?  Yes.  As a matter of fact, I believe that a woman could serve well as President — and one day will.  Portraits of significant men of history hang on the walls of my library –but so do portraits of Queen Elizabeth I of England and former British Prime Minister Margaret Thatcher.

The New Testament clearly speaks to the complementary roles of men and women in the home and in the church, but not in roles of public responsibility.  I believe that women as CEOs in the business world and as officials in government are no affront to Scripture.  Then again, that presupposes that women — and men — have first fulfilled their responsibilities within the little commonwealth of the family.

Mohler encourages us to think hard about this situation. It is definitely a knotty issue, but one we should all think about and address in our own families.

What of the unwanted pregnancy?

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Two views:

“Our beautiful daughter Bristol came to us with news that as parents we knew would make her grow up faster than we had ever planned. We’re proud of Bristol’s decision to have her baby and even prouder to become grandparents.” — Sarah and Todd Palin, in a statement to the Associated Press on the disclosure that their unwed daugther, Bristol, was five months pregnant.

“Look, I got two daughters — 9 years old and 6 years old. I am going to teach them first about values and morals, but if they make a mistake, I don’t want them punished with a baby.” — Barack Obama, on the campaign trail in March in Pennsylvania.

Team Jedi

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My younger brother Merv is a career Army guy. He joined the Army out of high school in 1987 and has risen to his current rank of major since that time. He has served in two wars — The Gulf War and the current war in Iraq — and has been deployed all over the world.

But calling him “an Army guy” is just not enough. This is a guy, I remember when we were growing up, who always had a great sense of humor, was a great athlete, a talented writer and actor, a musician and a budding theologian (he memorized Galatians). Pretty awesome. He is a well-rounded guy, for sure.

I don’t see him that much since he’s usually training or traveling all over the world working to keep America a safe place for people to complain about what a crummy place this (you know who you are). For me, it was a thrill to see him in June at our Brott family reunion and for my kids to see and talk to him some.

These days he is back in Iraq serving with a unit he helped train from Fort Riley, Kan. The difference this time is that he is blogging for his hometown paper, The Sulphur Springs News Telegram. His blog, called Jedi’s Blog, will recount his unit’s preparation and yearlong mission in Iraq. I think it’s great for Merv to give people a glimpse of what life is like for the guys who serve in the armed forces. Besides being a decorated and outstanding soldier, he is also a very gifted writer. This is just a sample from his latest post, entitled “Nomads”:

We are still at the adapt and survive level, so the constant hum of the massive diesel generators powering our life-support systems is reassuring. These behemoths look like they were plucked from mammoth bulldozers. It’s kind of like listening to your own heartbeat. The constant thump-thump is intriguing, but there’s a little voice in the back of your head wondering, “What if it stops?” You hope you never hear silence with the big diesels.

I have listened to guys who have served in the Middle East come back and talk about their mission. I deeply appreciate what they do, but it’s obvious that public speaking is not some of these guys’ strengths. But, without being biased, I can say that the average reader will get a lot of out of the Jedi Blog.

Take a few minutes to check out Jedi’s Blog and, then, to remember the men of that unit, the Iraqis they’re working with and the people they’re working for before God in prayer. Also, pray for the families back here who said goodbye to these men while they do their jobs.

My dear Aunt Bonnie

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More from the reunion: Just how many children did Archie and Nellie (Call) Brott have and what are there names? My Aunt Bonnie, with assistance from my Uncle Archie, gives it a shot:

Summer vacation

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It has been a long time since I posted anything around here and, not that you’re worried or anything, I’m doing fine. What’s been going on, you ask? Well:

Merv, Mike and Tony
Merv, Mike and Tony

FAMILY REUNION: It was a great thrill to travel to Spirit Lake, Iowa, to see many of my family on Brott side. To be clear, this was a reunion of my dad’s family, which meant there were people I had a) met when I was a child growing up in Minnesota and barely remember or b) never met at all and didn’t know I was related to them. And the frosting on the cake was my two brothers were there and so was my mom so I was able to introduce them to my kids. As another bonus, several of my nieces and nephews were there, too, so my kids got to meet some of their cousins — and there are a lot of them in my family.

INDEPENDENCE DAY: Most years, it seems, we end up going to South Dakota over the Fourth of July because my in-laws live along a lake and so it makes it an enjoyable time in several ways. This year, right after the family reunion in Iowa, we took my son and daughter to S.D. so he could attend camp at Byron Bible Camp and my daughter could help in the kitchen there. As is our practice, this turned into an extended vacation for the kids and us from each other. After camp, the kids stayed at my in-laws, who live about a quarter of a mile away from the camp. It’s a great arrangement because it allows the kids some special time with their grandparents and it allows us a chance to do things without them (although we miss them dearly!).

So, when the Fourth of July rolled around, we were able to join them in S.D. and have a pleasant time. Also, my wife’s brother and his family were there so it was another good time for family reunion. And, of course, we all enjoyed shooting and watching the fireworks.

GARAGE SALE: Today, we are sitting out in the front yard watching people look at our treasures, hoping they will buy some. I am thankful for shade, a cool glass of lemonade (thanks, Andrew!) and wireless access. I am also aware that I have way more than I need and ask God’s forgiveness for forgetting from time to time that he is all I need.

Valuable life lessons courtesy of Sears, Roebuck and Co.

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After much urging from my family, I bought a new lawnmower last week at the local Sears store. Like I told Cut the grassmy wife, I’m very comfortable buying electronics, but buying tools and machinery leaves me more uncomfortable. I looked at several stores before we settled on the 625 series Craftsman mower.

My current mower, a Snapper, I bought 13 years ago for $75 from one of my neighbors. He used to go to estate sales and buy lawnmowers and then fix them up. So I don’t know how old this mower really is, but I got a great deal on it and it has run for years. Still, my family hates it because it is loud and is not the easiest to push around the yard. I’m the only one who mows our yard, so I don’t care. But now that the kids are old enough, we decided it was time to get a more family-friendly mower. And now the time has come.

Because I want to use my new mower the right way, I’ve been reading through the owner’s manual. You know, how to use it correctly, maintain it and generally avoid cutting off a needed toe or finger. As I’ve read it, I realize that it is sort of like a bible of lawn mowing. There are things to do and things not to do on the path to happy mowing. Here are some of them that I’ve read:

  • If you feel uneasy on a slope, do not mow it
  • Clear the area of objects such as rocks, toys, wire, bones, sticks, etc. which could be picked up and thrown by the blade. Bones? Maybe cutting the grass isn’t the problem.
  • Be sure the area is clear of other people before mowing. Stop the machine if anyone enters the area. That’s not a great incentive to get that lawn mowed: “I saw someone while I was mowing so I stopped.”
  • Never direct discharged material toward anyone. It’s a lawnmower, not a gun.
  • Never assume that children will remain where you last saw them. So true. That is, unless it’s summer, they’re teenagers and they are watching television.
  • Never run a machine inside a closed area. It’s easy. The lawnmower is for the grass, the vacuum cleaner is for the carpet. Lawnmower outside. Vacuum inside.
  • And finally: Mower blades are sharp and can cut. And you thought this machine was for BENDING the grass.

Thank God for another year

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Celebrating my birthday Today is my birthday! To celebrate my family took me to one of my favorite places to eat in Grand Island, Sutter Deli. I had a delicious bowl of chicken noodle soup while Ruth Anne had the oriental chicken salad, Andrew the simple pepperoni pizza and Liz the Sutter Deli club. Four stars all.

On this milestone day I am thankful that in the past year God has mercifully loved me and guided me. I have failed him often, but I know that God has stretched me to hopefully be the man he wants me to be, or at least closer to that man.

I also am thankful for the many people God has put in my life to serve his purposes both to serve and be served by. God is good, and I am hopeful at the start of another year of getting closer to Him for his sake and my happiness.

Hollister, the Bible and teenagers

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I’ve been reading through Alex and Brett Harris’ book “Do Hard Things” and I can’t overstate how much I like it and strongly recommend it. As a parent of a teenager, I am constantly doing battle with our culture’s low expectations for them so it is encouraging to see two young men who are giving a great message that we all need to hear.

\"Join The Rebelution\"

One of the things Alex and Brett talk about is that the whole idea of a special class of people called “teenagers” is a 20th century idea that has strongly taken root. In their research for the book, they discovered that even the word “teenager” did not exist publicly until 1941 and that, in an effort to protect children from cruel labor laws at the turn of the 20th century and instill universal education, we created a period where children are not yet adult but no longer children. We created the low expectations. In “America in So Many Words,” it is described this way:

Thus the years ending in -teen became something new and distinctive … The teenager remade our world. The concept is … subversive: why should any teenager enjoying freedom submit to the authority of adults? With the discovery of this new age, ours has been the century of the teenager ever since.

What does the Bible say about teenagers? Absolutely nothing. But it is not silent about youth and expectations. Instead, in I Corinthians 13:11 it says: “When I was a child, I spoke as a child, I thought as a child, I reasoned like a child. When I became a man, I gave up childish ways.” Furthermore, in I Timothy 4:12 it says: “Don’t let anyone look down on you because you are young, but set an example for believers in speech, in life, in love, in faith and in purity.” And finally, in Romans 12:2: “Do not conform any longer to the pattern of this world!”

What does our culture say? There is a joke that if Hollister (or American Eagle) said breathing was uncool, 92 percent of all teens would be dead. So, maybe it’s time for all of us to start thinking more highly and expecting more from these people we call teenagers. I leave you with the wisdom from I Corinthians 14:20:

Brothers, stop thinking like children. In regard to evil be infants, but in your thinking be adults.