Author Archives: Jen

About Jen

Jen isn't quite sure when she lost her mind, but it is probably documented here on Meditatio. She blogs because the world needs her snark at all hours of the night... and she probably can't sleep anyway.

I’m Truly Speechless

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Great Falls Tribune: Parents of child born with cystic fibrosis file lawsuit

I’m just going to quote the whole article.

The parents of a child born with cystic fibrosis have filed a lawsuit against health care providers contending they would have terminated the pregnancy had they known of the genetic disorder.

The Bozeman Daily Chronicle in a story published Sunday reports that Kerrie and Joe Evans of Gardiner filed the lawsuit in October in Gallatin County District Court, citing emotional distress and increased health care costs.

Named in the lawsuit are Livingston HealthCare, Bozeman OB/GYN and Shodair Children??s Hospital Department of Medical Genetics. Their attorney has asked that the case be dismissed.

Cystic fibrosis causes sticky mucus buildup in the lungs and other organs, leading to infections, digestive problems and death in young adulthood.

The typical life expectancy is about 37 years, according to the Cystic Fibrosis Foundation.

I decided to look up whether or not the test could be done in utero and according to March of Dimes, it can if medical tests show both parents to be carriers. If both parents are carriers, it’s a 25% chance that the baby will have CF.

Apparently, both parents did not know that they were carriers. According to the March of Dimes page, the risk is 1 in 29 for Caucasian parents. Doing the math, their risk of having a kid with CF is (1/29)x(1/29)x(1/4) which equals 1/3364 which is 0.0292%. In other words, it’s a very low risk but both parents have to know that they were carriers to have this result.

(By the way, my risk of HEELP Syndrome to the extent that I did was between 0.02-0.06% for comparison.)

As a mom of a special needs child, this is rendering me so angry that I’m almost speechless. Yes, it’s hard. Yes, the medical expenses are insane but apparently nobody decided to tell them to apply for Medicaid or SSI because their child could likely qualify. I’ve been in the NICU with Daniel as well as the PICU and the PICU stay was definitely worse because I saw kids *die* in there whose families I had come to know. Heck, my kid almost died one evening. It was the worst evening of my life and I never want to experience it again. Guess what? I’m not getting any emotional distress compensation for that nor will I ever. I’ve had to fight with Medi-Cal and California Childrens’ Services to pay for the part of his hospital stay and subsequent medical treatment that insurance didn’t cover. Apparently, I’m not getting a medal for that either.

However, if Daniel had died that night, all the angst/trauma/fighting for him would have been so incredibly worth it and I would have praised God for giving me the time I had with him because my life is immeasurably better because of him. Having Daniel taught me how to stand up for myself and not to take any crap from anybody. Getting to hold him for the first time in the NICU was amazing and one of my favorite pictures is of him and I asleep in the NICU on Mother’s Day. He is such a fighter that he inspires me daily and even though I have put God on notice several times since his birth, he has taught me so much about God’s power to heal.

I think the person in my life that most deserves to be angry at this story is Paula Ruter, a mom online who I have gotten to know. Her teenage daughter Anna has MSUD (Maple Syrup Urine Disease) and has suffered brain damage as a result of her protein levels getting so high and edema setting in. Paula isn’t getting any emotional distress compensation nor would she think of asking for any. By the way, MSUD is rare — the odds are 0.00056% so if anyone deserves compensation, it’s her.

I have said that I will never judge anyone on having an abortion because I am not in their shoes and I would not be able to make a decision like that for them. I think I may be proved wrong in this case.

Daniel and I on Mother's Day 2009

Lenten Hymn Sunday (I)

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While I had no plans to incorporate YouTube into my writings, I did plan to post a hymn every Sunday.

I was going to use a different hymn today but saw this one as I was looking around.

I am weak, but Thou art strong;
Jesus, keep me from all wrong;
I??ll be satisfied as long
As I walk, let me walk close to Thee.

Just a closer walk with Thee,
Grant it, Jesus, is my plea,
Daily walking close to Thee,
Let it be, dear Lord, let it be.

Through this world of toil and snares,
If I falter, Lord, who cares?
Who with me my burden shares?
None but Thee, dear Lord, none but Thee.

Just a closer walk with Thee,
Grant it, Jesus, is my plea,
Daily walking close to Thee,
Let it be, dear Lord, let it be.

When my feeble life is o??er,
Time for me will be no more;
Guide me gently, safely o??er
To Thy kingdom shore, to Thy shore.

Just a closer walk with Thee,
Grant it, Jesus, is my plea,
Daily walking close to Thee,
Let it be, dear Lord, let it be.
(HT: Net Hymnal)

I have visions of it being played in a New Orleans funeral procession or by a Dixieland jazz band. In addition to it being a peppy and catchy tune, it talks about a reliance on the power of God to live.

Praying for Our Public Officials

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I’m on the mailing list for Sojourner magazine and receive an email-zine from them weekly. This week’s email had an article by Eugene Cho, a Seattle pastor, on his conversation about prayer with President Obama. You can read the whole article here (and I highly recommend it) but the following caught my attention:

I shared with President Obama that I occasionally but regularly prayed for him and this is how he responded:

??Thank you, Eugene. I really appreciate that. Can you also please pray for my wife and children? Pray for their protection.??

His demeanor changed. Perhaps, this is just me. Perhaps, I??m reading and analyzing too much into all the non-verbal cues but then again, I??m a pastor and after 21 years of doing ministry, you develop a ??pastoral sense?? and I genuinely sensed his gratitude for prayer and his request for prayer for his family.

I haven??t been able to stop thinking about our short conversation ?? and a sense of the burden and weight of his job and the ??calling?? of the Presidency. In many ways, we ought to commend the courage of all those who step into leadership ?? on any level ?? including the highest level. We can criticize all we want about our current presidential candidates but we must commend them for their courage to place themselves in such vulnerable positions.

Reading it reminded me of a chapter of What’s So Amazing about Grace? by Phillip Yancey (which *EVERY* Christian should own and read yearly) regarding Bill Clinton and the nastiness he endured as president from those who opposed him. It was painful for him to hear all the nastiness from his fellow southern Baptists (yes, Bubba was an evangelical) and Yancey talks about the hate mail he received when he wrote an article on the faith of Bill Clinton for Christianity Today magazine.

Adding to all of this is the firestorm ignited by Franklin Graham (son of Billy Graham) when he questioned Obama’s Christianity, saying that “Islam has gotten a pass under the Obama administration”. Apparently I’m the only one that remembers the hullabaloo about Obama’s pastor Jeremiah Wright during the 2008 election?

Romans 13:1 reads as follows: “Let every soul be subject to the governing authorities. For there is no authority except from God, and the authorities that exist are appointed by God.” To me, that means that we need to acknowledge the fact that our leadership is where they are due to God’s will, whether we like it or not. I know that the litany for the Prayers of the People we use at Metanoia incorporates a prayer for our civic leaders and even though I wanted him out of office, I did not cover my ears or leave the sanctuary when that section came up and George W. Bush was president. It’s in stark contrast to the prayer emailed out by Kansas House Speaker Mike O’Neal which effectively called for the death of Obama in citing Psalm 109:8. (If you go one verse further, it talks about “[letting] his children be fatherless and his wife a widow”.)

This Lent, I think that one of our prayers should be for our country’s leadership. We *are* in an election year and we should be prayerfully considering the direction our country should be going.

Lenten Worship Music Friday (I)

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I had not intended to post any Youtube videos during my Occupying Lent thing but I had this song stuck in my head when Daniel and I were walking around the church yesterday afternoon. I think I’ll make this a weekly thing and just post commentary on whatever videos I use. 🙂

So… this is a setting of a portion of Psalm 51. (I always read the Psalms from the King James version, not because I am a KJV-only Christian but instead because I love how the Elizabethan English reads.) It’s one that I’m not sure where I learned — possibly the Episcopal church I attended in San Jose but it also could have been college. In any case, it’s one that we used as a confession of sin during “contemporary” services when I became a Lutheran.

As you can hear (and see), it’s a simple enough song that it works for youth group and camp. (I actually have it on a camp music CD from a Lutheran camp in northern California.) I love it because it implants that bit of Scripture in the hearts of the kids. I look forward to teaching it to Daniel once he’s older.

7 Quick Takes — Occupying Lent, Veggie Burgers, and #ashtag Loveliness

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7 Quick Takes

Wow! My first couple days of Lent have been sooooo amazing! I’m just gaining so many insights into my faith and… yeah, I’ll just shut up now and move on to my Quick Takes.

— 1 —

Please help my friend Paula win an award from Circle of Moms. Her daughter Anna has Maple Syrup Urine Disease (MSUD) and has been waiting two years for a liver transplant. Their transplant blog was nominated to be in the Top 25 Moms with Inspiring Families. If you’re a mom, please go vote. At last glance, she was #26 or #27.

— 2 —

I have a mirror site for my Lenten writings on WordPress.Com. Want to read my Lenten writings (which are crappy thus far) but do not want to have to look at my eeevvvvvvvvviiiiiilllllll Obama button? Go here. You’re welcome.

— 3 —

Need some ideas for food on meat-free days? Priest’s Wife has a great entry on meatless means for manly men. My recommendations are Gardenburgers and various Morningstar Farms products (both in your freezer section). I can personally vouch for both brands’ iterations of Portabella/Mushroom Lovers burgers and spicy black bean burgers. I’m also a fan of Morningstar Farms Tomato & Basil Pizza Burgers and their veggie corn dogs. (Truthfully, I prefer them to regular corn dogs.) I can’t speak highly of Morningstar Farms breakfast products because the texture is just wrong to me and I’m also mildly allergic to eggs (i.e. no breakfast sandwiches) for me. My vegetarian husband, however, loves their veggie bacon and veggie sausage patties and links.

— 4 —

I know that the vast majority of you are Catholic but I have a source for interesting and worshipful music. Ron Pogue at Unapologetically Episcopalian posts Morning and Evening Prayer every day and includes a Youtube video of sacred music each time. Some of it is Anglican chant (which is incredibly beautiful) and some of it is classical music. He’s also on Facebook which means that you can get it in your news feed… if you haven’t given up Facebook for Lent. 😉 If I didn’t already have a devotional that I use, I’d totally do Morning Prayer using his site and my Book of Common Prayer.

— 5 —

Along the lines of interesting and worshipful music for prayer, I can’t recommend Pray As You Go enough. I used to use this (in addition to Our Daily Bread) during my hour-long commute to work in Montana. It was mostly silent prayer but there was always some kind of music at the beginning and it spanned the spectrum from Taizé to chant to Ladysmith Black Mambazo. I also used the silent time after I hit mile marker 379 on I-15 to pray for people.

— 6 —

My thanks to Kate for coming up with the idea of posting pics of our #ashtag loveliness on Twitter. (Thanks to Beth Anne for compiling them.) My tweets are protected so here are my pics of me rocking my #ashtag.

Me with my ashes
What I normally look like (with ashes)

Me attempting to look happy.
Me attempting to look happy and not like I’m fasting.

Me with the uncooperative bear child.
Me with Mr. Uncooperative.

— 7 —

For want of a simple salt, a woman and her baby died today. What? You didn’t hear about that on the evening news? Oh wait… that’s because it happened in the Third World! Quoting the Preeclampsia Foundation website:

Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.

One of the treatments for preeclampsia (to keep it from jumping to full-on eclampsia) is magnesium sulfate (MgSO4), a simple salt that we refer to in the USA as “Epsom salt”. The shortage of a solution of that salt (the concentration needs to be specific) and the lack of a medical professional trained in its usage means the mother and baby die. Want to help combat that problem? Sponsor me in the Promise Walk for Preeclampsia.

For more Quick Takes, visit Jen at ConversionDiary.Com.

Publicly Proclaiming Our Sinfulness and Welcoming Others

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All day yesterday, the Facebook page of the Episcopal Church showed pastors out giving “ashes-to-go” to people outside of churches and hospitals and at train stations. Various articles have been written on the Ashes To Go practice including one written by Lauren Winner, evangelical “It Girl” and professor at Duke Divinity School. (She was also recently ordained an Episcopal priest and serves St. Luke’s Episcopal Church in Durham.)

In her article, Winner talks about how this is wholly appropriate because Christ was crucified in a public place. Quoting her:

I would add that there is something about Ash Wednesday — the day the church sets aside for people to acknowledge, before God and one another, our mortality, our finitude and our moral failings — that suggests taking this particular liturgical action into the streets (besides following, as it does, the public revelry of Mardi Gras, Fat Tuesday). We are going into public with our ashes because Jesus died in public. He didn??t die in the Upper Room surrounded only by his disciples.

What ministers with their ashes are offering is a bodily marker of God??s entry into our death. The ashes Cathie will inscribe on my forehead, and I on hers, let me name truths that most days I cannot or will not name — that I have sinned; also, that I have a body, and I am going to die. To walk around all day with a cross on your head is to walk around in a body inscribed with death. It is also, oddly, to walk around inscribed with hope — the hope that comes through Jesus?? having joined us in our mortality.

I have to agree… I run with a number of Catholics online and there was a popular Twitter hashtag called #ashtag in which people (myself included) posted pictures of themselves (and in one case with their significant other) with their ashes. For many people, Ash Wednesday is a day when people can publicly claim to be Christian and wear an outward sign of their faith in the form of the ashes on their foreheads. I recall Winner mentioning the statistic about more people attending church on Ash Wednesday than on Christmas or Easter in her book — something about the need to show their families and loved ones that they were indeed Christian and that their salvation was somehow assured for another year.

Ashes To Go works on a level that I think most strictly observant Catholics and other liturgical Christians forget: there will be those who for whatever reason cannot make it to church on Wednesday because they’re so busy. It’s not that they don’t want to be observant — it’s that they have work, kids, a commute, and everything else. Daniel and I made it to the first 15 minutes of worship (long enough to receive our ashes and hear the collect) and the only reason we did was that we live around the block from the church. Had I faced the tasks of making dinner, feeding Daniel and myself, getting both of us ready, driving to church (especially if it would have been 20 minute drive on gravel roads like it was in previous parishes), and then trying to keep my grumpy two year old occupied, I probably would have skipped it or at least told Jon to bring ashes home to me. (To those who read my blog and are that observant with more than one kid, you guys are rock stars and you have my props.) There are a number of people in that position. They may not have children or their children may be old enough to make dinner but there’s also homework, squeezing in housework, baths, putting the children to bed, and then bills to pay.

I feel that as we go through Lent, we should be mindful of those who may want to believe or who may believe and feel uncomfortable passing through the doors of a church for whatever reason. If one feels led, they should pray for them; but mostly, I feel like we should find ways of helping them engage their faith as a step toward moving them into reconciliation and community with others.

Ashes on Wednesday

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It’s Wednesday now and the fun is over. The pancakes have been eaten, the Coke has been drunk, and it’s now time for some introspection, prayer, and tonight will come the ash cross on my forehead. (I’ll post pictures.)

OK… so those non-Christian and/or those who are not big on Church history are asking “Jen, why ashes?” Well… back in “the day”, one showed sorrow by donning sackcloth and rubbing ashes on oneself.

“Therefore I abhor myself, And repent in dust and ashes.??
–Job 42:6

“Is it a fast that I have chosen, A day for a man to afflict his soul? Is it to bow down his head like a bulrush, And to spread out sackcloth and ashes? Would you call this a fast, And an acceptable day to the LORD?”
–Isaiah 58:5

“Then word came to the king of Nineveh; and he arose from his throne and laid aside his robe, covered himself with sackcloth and sat in ashes.”
–Jonah 3:6

Looking at the Isaiah passage, we come to the basis for the day. This is the first day of Lent, a season of reflection on oneself and one’s sinfulness. The 40 days commemorate the 40 days Jesus spent in the desert, the 40 hours He spent in the tomb, and the 40 years the Israelites spent in the wilderness. (“40” is kind of a big deal number in the Bible.) Before anyone accuses me of bad math, Sundays don’t count because they’re “mini-Easters”. (I’ve always thought that the “Sundays don’t count” thing was a slacker argument but who am I to argue with generations of tradition and practice?)

I’m not technically fasting today in that I’m eating; but I’m avoiding meat and also avoiding Coke. My plan during Lent is to avoid Coke as much as possible and try to break myself of the addiction. I know that I’ll probably fall but I’d like to at least try. I’m also not eating meat on Fridays and I’m fasting between 12-3 on Good Friday. (I’m an ex-Episcopalian. What can I say?) One of my meals will be some potato soup I have thawed out and another will be ramen.

OK… enough giving a basis to today. Now to live the life!