Things I Never Thought I'd Hear

Parenthood sure has been full of surprises. Here are few representative sample comments from the past 8 1/2 years.

"Mom, this is my favorite hospital." (as we drive up to the largest of the four locations we visit on a regular basis)

"We have to offer you the option of terminating the pregnancy." (After we learned we were expecting a boy and that he had complex heart defects just like his oldest sister. I look at him strutting around our house now and cannot imagine...)

"Your daughter is in what we call 'precocious puberty.'"

"I love you, Mom." and "I want a hug from Mom." (from my nonverbal daughter, using her communication device)

"The amount of funding we believe it will take to support your daughter on a daily basis is $120,000 per year." (I had no idea the care that we provide our oldest child alone is worth that much money!)

"We love your family, you're great people, but you can't bring your daughter here when she's sick. She's too complicated. You have to take her to the main hospital." (the staff at the urgent care we went to, trying to avoid another Emergency Room visit.)

"Your daughter kept driving her wheelchair into the boy's bathroom. On purpose. She was laughing the whole time."

"I believe your daughter can learn to really-truly read!" (phone call last week from our amazing support educator)

"We voted to appoint you to the hospital board of trustees."

"The pictures show that a large vessel is adhered to her sternum, so we can't just open her chest without rupturing that vessel and losing her. We have to put her on bypass using the large vessels in her groin. She will be very sick when she comes out of surgery. Expect her to be in the hospital for at least 3 weeks."

God has done some amazing, unexpected, and unexplainable things. We look forward to seeing what else he has in store as he makes himself large in our lives. And we pray for other families who are walking through similarly unexpected and unexplainable situations to hold fast and walk well, for the sake of Jesus' name.

"System Outage"

The last two weeks have found me going at a dead run, but still just barely keeping up. Some of this is the nature of getting back into the school routine, some of it comes from the busy-ness of fall. But a significant hurdle fell in our path with the unexpected disruption caused by Hurricane Ike. Unusually strong remnants of the storm blew through our area a week and a half ago, and many people still are without power today. Schools and businesses had to close and we all had to adapt to a new scenario every day. I'm very thankful that we have nothing like the devastation the folks on the Texas coast are dealing with. For the most part, people's homes are repairable and they have most of their belongings. Yet, it was a big storm and is being called the most severe and widespread "system outage" in recorded history here.

So between all the things on my plate in the next month and the storm, I had to take a week off blogging. I also have been re-examining my priorities and my routines. I need to use my time better, particularly the time I spend working and playing on the computer (because when I'm honest, I waste a decent amount of time on here). I currently bounce around from task to task to computer like a ping-pong ball. It's very inefficient and I tend to lose track of time. I've realized I'm not following through with my kids because I'm so distracted. And then, when I get the kids to bed, I emerge to face a pile of dishes, laundry, and chores that are still undone. This places unnecessary burden on my husband who will help me with housework at night when he could or should be fulfilling his responsibilities as an elder, teacher, and/or music leader.

So my new plan is this: I'm going to purpose in my heart to do all my home-keeping during the day. I think this will eliminate that pile of undone work at night. I'm going to try keeping my daytime computer use to work and home management (paying bills, budget stuff, etc.), and keep that to just 1-2 hours while kids are napping or having some quiet time. I will only allow myself to "play" on the computer in the evening after the kids are in bed. That means writing on this blog will occur in the evening now, and will be competing with the stack of books I'm trying to get through, spending quality time with my husband, knitting, working on photos and albums for the kids, etc.

This most likely will result in less frequent posts to this blog. But the work that I need to be doing is so much more important.

Oh, and in case you're wondering about that garage sale? Not happening the first weekend in October, for sure. It may end up being postponed until spring!

Happy Birthday Older Boy!

Mamaw made Teenage Mutant Ninja Turtles cake (Leonardo).
Since I couldn't find any birthday party supplies in TMNT,
we blended in a Transformers theme as well.

Older Boy and Scott

One case where I am pretty confident that I can read their minds!
"Man I wish it was MY birthday."

Unlocking Garage -Sale Secrets

Help! I need to have a garage sale. But getting ready for this is really overwhelming me. We have a lot of baby gear that we no longer need, along with the flotsam and jetsam of normal life with kids. Many of this is still in the boxes we packed it in when we moved 2 years ago since I got pregnant shortly after the move. So I have a room-sized corner of our basement full of boxes that need to be sorted and priced, along with dozens of clothes boxes. Then there's all the stuff that desperately needs to be sorted and reorganized upstairs -- toys, books, miscellaneous.

I know it will be wonderful when it's done, but I don't even know where to start. And I know there are ways to price and sort and present things to ensure the most successful garage sale, but I don't know any of those ways!

Do any of you have experience or suggestions for me? What about picking the right weekend? Is October too late? I hear that the first weekend of a month is the best time to do it, so my current goal is to do it the first weekend of October -- Thursday, Friday, Saturday morning. One of my neighbors said she'd do it with me, and I thought I'd ask the other neighbors since a "neighborhood-wide sale" seems to be a draw.

September Is Childhood Cancer Awareness Month

Did you know that September is National Childhood Cancer Awareness Month? As the mother of children with special medical needs, I read many many Carepages and CaringBridge pages (for those of you fortunate to have never heard of these, they are free websites for people to keep family and friends updated on their or their child's fight against a variety of diseases, injuries, etc). Many of these are written for children battling a variety of aggressive cancers. And I've been shocked to read, in the last few days, about the appalling state of pediatric cancer research funding in this country.

First, please consider these sobering statistics from the American Cancer Society and National Cancer Institute.

*Each school day, 46 children are diagnosed with cancer.

*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.

*One in 330 children will develop cancer by age 20.

*Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.

*Cancer remains the #1 disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

*In the U.S. almost 3,000 children do not survive cancer each year.

*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

*Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.

*As a nation, we spend over $14 billion (that's with a B!!!) per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximiately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

When you look at the money spent on research of cancer cures, keep in mind something known as Person Years Life Lost, or PYLL. PYLL = median age of death in the US (70) minus the average age of diagnosis for the cancer. So if you cure that kind of cancer, how many years of life are you given back to the people who get that cancer? Obviously, with pediatric cancers, you're giving them back almost an entire lifetime.

I read a Carepage yesterday ("AJsspace" for you Carepage readers out there -- AJ's dad is a passionate writer who lost his son to cancer in January of this year), which breaks down the ugly detail this way:

The 10 most prevalent adult cancers, in order of decreasing occurrence:

1. lung
2. prostate
3. breast
4. colon/rectum
5. lymphoma
6. melanoma
7. leukemia
8. pancreatic
9. brain
10. ovarian

Consider the following data on each type of cancer:

1. Median age at diagnosis (NCI)
2. Number of new cases (ACS)
3. 5 year survival rate (ACS)
4. 2006-2007 ACS funding for specific cancer type (ACS)

Observations
1. The youngest median age at diagnosis is for childhood cancer. Thus, childhood cancer also has the highest PYLL per diagnosis.
2. The highest number of new cases are for a) lung, b) prostate and c) breast.
3. Five-year survival rates for prostate, breast and melanoma are 90% or better. Pancreatic and lung are the lowest 5-year survival rates.
4. In sheer numbers, lung cancer has the most PPYL, followed at a distant second by a group with similar PYLL values; breast, colo-rectal, lymphoma and brain. Interestingly, the lowest number of PPYL is for prostate cancer, with a 99% 5-year survival rate it yet still gets 11% of all ACS funding!
5. $0.22 of every $1.00 the ACS funds goes to breast cancer. Colo-rectal, prostate, lung, leukemia and lymphoma all check in at $0.13 to $0.09. The lowest is childhood cancer at $0.03 for every $1.00 the ACS funds.
6. 37% of the ACS budget goes to 3 cancers which currently have a 90-99% five year survival rate: prostate, breast and melanoma.

When you divide the ACS funding amount by the PYLL (person years life lost), the result shows how many dollars are being spent per year of life lost for each cancer.

1. The best way to reduce the number of PYLL by curing 1 case comes from curing childhood cancer, with 67 PYLL.
2. Although childhood cancer is "rare" (another discussion for another time, but note that 1 in 330 children is diagnosed with childhood cancer), its total PYLL is greater than or equal to 4 of the top 10 adult cancers!
3. The big winners are prostate, with an amazing $896 per PYLL and breast, with $100 per PYLL. Remember, the 5-year survival rate for these two are 99% and 90%! Yet these two account for 1/3 of every funding dollar from the ACS.
4. The middle bracket consists of melanoma, leukemia, colo-rectal, ovarian, pancreatic and lymphoma, with $/PYLL ranging from $65 to $33.
5. The next lowest is brain cancer $25/PYLL. Which is surprising because it has a low 5-year survival rate and the earliest diagnosis age except for childhood cancer.
6. The next lowest funding for PYLL is childhood cancer. $24 is spent for every PYLL associated with childhood cancer. This is just 3% of the $896/PYLL for prostate, and just 24% of the $100/PYLL for breast. I just don't even know what else to say.
7. The big loser is lung cancer. Only $11 is spent per PYLL. One can imagine that since the majority of lung cancer cases are the result of a lifestyle choice (lungcancer.org), and in those cases it is preventable, public health decision makers (whoever THEY are) have put this at the bottom of the list.

Conclusions

1. Childhood cancer represents the best value in terms of saving PYLL by curing one case.
2. While childhood cancer is relatively "rare," the total PYLL from childhood cancer is greater than or equal to 4 of the top 10 adult cancers.
3. Despite that, overall funding for childhood cancer, when considering PYLL, is shockingly low. $1000/PYLL combined is spent on the two most prevalent cancers of men and women (not including lung). $24/PYLL is spent on childhood cancer.
4. Lastly, I have grouped tens of cancers into one, childhood, so funding for each specific type of childhood cancer is even less.

So this month, if you run across people in your community working to raise awareness and funding for pediatric cancer research, stop and talk to them. They've been through hell on earth with their children and are dedicating their lives to trying to make this world a better place for your children.

And if you have a spare buck or twenty, consider dropping it in their bucket. It is life-or-death important.

Back to School

I'm a little behind in posting these, but as those of you with school-age children know, the first few weeks of school each year are packed. This year I have a kindergartner and a 3rd-grader, and two who are pining away to go themselves! (Little Girl has declared many a time that she wants to skip being 4 and go straight to being 5 so she can go to school!)

Older Boy in the Kangaroo class

Waiting for the buses (Little Boy is crawling around out of camera-shot)

As soon as I snapped the picture, Older Boy wheeled around,
tossed out a quick "Bye Mom!" and marched up the steps!

A Woman's Highest Calling

I've read quite a number of blogs and articles criticizing Sarah Palin's decision to run for vice president of the U.S. Liberals have stooped to new lows accusing her of all sorts of things, including claiming Trig is hers when he's really her daughters (quickly proven false when her daughter turned out to be pregnant already).

But what is most surprising (though it shouldn't be, I guess) is the criticism arising from Christian women. They express genuine concern about her family, even though that kind of decision can only be made by the specific family themselves.

Most concerning to me is the claim that a woman's highest calling is to be a wife and mother. This is patently unbiblical for the simple fact that many women are called to be single, and many others who are blessed with husbands are not blessed with children. God clearly has callings and purposes for those women!

I really appreciated Amy's reminder that a woman's highest calling is to honor God as a living sacrifice wherever she is.

In the Kingdom economy, the first is last and the last is first. The greatest is a servant, and that is why I do not truly understand the propping up of the nobility of motherhood beyond what is reasonable. Superlatives are misguided here. A single woman who works as a janitor during the night shift—and does her work as unto the Lord—- she has the highest calling. Her reward is the greatest. The one who loves the Lord with her whole heart, soul, and mind—she is the one who pleases God. This is the good news– that no matter who you are, what you’re doing, or where you’re at—that faith in God and the work of His son Jesus Christ pleases Him. [emphasis mine]

So assess Sarah on her policies, her philosophy of governing, her position on taxes and charity and energy and health care... but not on her choice of career. God gave her gifts of leadership and administration, and she is right to exercise them in whatever arena He places her in.

Voting As A Christian

A friend of mine sent me the link to this very well-written blog on how to vote as a believer today. I really appreciate how this writer acknowledges the nuances and complexity of making a good choice. He, like I, believes that voting is never black and white.

Who will I vote for in November? I honestly don't know yet. I was deliberately waiting until the nominations were sewn up (since, I confess, I didn't participate in Colorado's cumbersome caucus process), before spending a lot of time reading up on each possible candidate. Of course, I've followed the main stories in the news, but they reveal extraordinary little about really substantive matters. Between now and November I will become better informed and then make my choice. But it won't be on the basis of one, two or even three issues. It will be on the entire platforms of each candidates, and it will be based on what my best sense of biblical priorities is, consulting the whole counsel of God (Acts 20:27). [emphasis mine]

Voting as a Christian thus also means that I do not think primarily in terms of what is best economically for my family or for Americans, and not primarily what is in our "national interest" (to use the popular political phrase) when it comes to foreign policy. Politicians for both main parties will be claiming to do all of that, understandably, since they are representing our country. But as a Christian I have to take into account information that no political speech will ever include-information like the rapid growth of the underground church in Iran. Christians in that country tell us the Iranian church would be jeopardized more by American military action than by anything else.

At his conclusion, he mourns the loss of gracious but vigorous political discussion between dissenting believers.

I remember during my public school years, growing up in Illinois, how Christians could have a vigorous political conversation, disagree as to which party or candidate they would support at a given time, and still be friends. Churches could even host forums in which civil debate along these lines occurred. My eighth-grade history teacher, herself a former local Republican politician, used to intone the refrain so often that I still hear her words in my head: "The far left and the far right, avoid them both, like the plague!" My, how Christians have become so much more polarized over the last 30 years! Thoughtful, well-meaning Christian friends send me e-mails with made-up material pasted from internet sites that reinforce their personal convictions on political issues without even a quick check of a website like www.snopes.com to check their accuracy.

Others that are primarily factual contain such sub-Christian invective against those who would disagree with them that I just want to cry. Some of us are old enough to remember when not a single political advertisement on TV was allowed to smear the opponent the way almost all such ads not routinely do. But my grown children, alas, have no such memories. May some of us take the lead in this fall's campaigns to elevate the conversations to more thoughtful and gracious levels.

I wholeheartedly agree. I hope that you will take the time read the entire article.

The V.P. Shocker

About a week ago I wrote about the upcoming election and how I do not default-vote because I don't assume that Republican=Christian. At the end of the entry, I wrote this:

That is why I am still undecided about the presidential election. McCain's choice of vice-president will tell me a lot.

We now know who the Republican candidate for vice-president is, and boy was she ever a surprise. A pleasant one, at that. At this point, I am still undecided, but the pendulum has definitely begun swinging in the other direction, particularly after listening to Sarah Palin's speech last night.

Someone shared a very thoughtful comment this morning about the two parties' candidates. They disagreed with my assessment of the candidates and pointed out that McCain and Palin are independent thinkers who do not thoughtlessly follow party lines. This is certainly something I have taken note of. The Democrats are trying to bill McCain as "more of the same" but this disregards his actual track record with his party.

I really enjoyed Sarah Palin's speech last night. I like her style, I like her family, I like her experience (another glaring weakness in the Democratic party candidates). She's a very normal, full-dimensional woman -- warts and all.

I'm not aware of any books written by her, so I can't do the same kind of research on her that I can do with the others. So, I am eagerly anticipating the debates, especially the VP debate (may there be more than 1!) so I can hear each person, in turn and without speech writers, state for themselves their ideas and plans for the country.

And incidentally, she managed to speak directly to me, sitting on my couch with a pile of medical syringes drying on the counter next to my mini-pharmacy, the wheelchair, the stander, and the walker...

"Our family has the same ups and downs as any other ... the same challenges and the same joys.

Sometimes even the greatest joys bring challenge.
And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House."

Those few simple sentences brought tears to my eyes.

Milk for a Lactose-Intolerant Child?

My youngest is lactose-intolerant. He is also 13 months old and far enough out from his surgery that I think I can take him off the infant formula he is on now. He's been doing great on soy formula, so I know that soy milk is one option. However, way back in my memory I remember someone saying that soy milk has its own problems -- something about how closely it emulates estrogen or something.

What I do know is that cow's milk is definitely not an option right now. We don't actually drink much cow's milk in this house anyway because I've learned that humans don't digest it well, which explains why all the kids were constipated when drinking it!

I don't have much experience in this area. My oldest was lactose-intolerant, but she stayed on hospital formulas, so I never had to worry about it.

Do any of you have any recommendations?

Currently Experiencing Technical Difficulties

Please stand by.

I think I'm going to have to get a new blog design -- it appears that the blog design company I worked with to get this one done has closed and took down all their images!

So in between trying to get caught up on all the back-to-school paperwork, laundry, and housework that piled up while we were in the hospital last week; and dealing with the new post-hospital paperwork, appointments, medical status, and meds; hiring a new aide to help me with Elli in the mornings, pushing for some big changes at work; and trying to navigate this bureaucracy-thick, not-quite-as-helpful-as-you'd-think, non-intuitive government assistance program.... somewhere in there I'll eventually get this blog fixed.

Meanwhile, I'm thankful for each seizure-free morning, dinner we can enjoy together as a family, and nighttime kiss and hug I can give/receive.