About the ALS Ice Bucket Challenge and Giving to a Good Cause

 Like thousands of others, I participated in the ALS Ice Bucket Challenge to raise money for ALS. If you aren't familiar with the challenge, the deal is that, once challenged, you have the option to either dump a bucket of ice water on your head and donate $10 to www.alsa.org, or skip the ice and make a donation of $100. As of today, more than $103 million dollars has been donated to the organization. More importantly, people are talking about a horrible disease.

For many, amyotrophic lateral sclerosis is better known as Lou Gehrig's disease. For me, ALS is also known as Ed Dobson's disease.

Ed Dobson was my first pastor when I moved to Grand Rapids, Michigan in 1999. It was a very large church and easy to find, so I thought it would be a good place to try to make some friends in my new city. I quickly got involved in singles ministry and met some of my closest friends. Prior to coming to Calvary, Pastor Ed was best known for his work with the Moral Majority and Jerry Falwell. After becoming disillusioned with politics, he moved to Grand Rapids, Ed ruffled feathers by becoming and early advocate for those living with HIV/AIDs in West Michigan. He became less concerned about power and more dedicated to mercy. Even though he preached to audiences in the thousands, he was still approachable to individuals. Lean and healthy, I remember being impressed by the way he lead hiking trips with young people from the church. Then, in 2001, he was diagnosed with ALS. 

ALS is a vicious disease, slowly taking away a person's ability to control their body, starting with large limbs--arms and legs--and eventually robbing them of their ability to move, swallow, and finally, to breath. It's a long goodbye. When Pastor Ed was diagnosed, he was given two-five years to live. He's been around for thirteen, and has made the most of these years when his brain is willing and his body is weak. He's written a couple of books, including Prayers and Promises When Facing Life Threatening Illness and Seeing Through the Fog: Hope When Your World Falls Apart, as well as several DVDs as part of Ed's Story. 

In the flood of posts and columns being written about ALS as a result of this challenge, the one that has stuck with me the most is the one by Bo Stern, who wrote "What An ALS Family REALLY Thinks About the Ice Bucket Challenge."

I highly recommend you read the entire post, but here's the take away: The Ice Bucket challenge is a fundraiser to be sure, but take the time to learn a bit about the disease, too. Here are her suggestions for "walking a mile in ALS shoes."

If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day. (Source: Bo Stern )

There have been criticisms of the challenge, for sure. That it's just a fad. That the ALS isn't a "worthy-enough" disease. That the ALS Association doesn't spend donations in the right way, the waste of water, etc. But here's what's good about the Ice Bucket Challenge: people are giving the money to help others. That's a win in my book.

When all the Ice Bucket buzz was filling up our feeds, I queried my Facebook friends:

If you could magically raise millions to cure or alleviate a disease or condition, what would it be?

Cancer. MS, autism, and mental illness topped the list of replies. Other responses included Alzheimer's, Crohn's, Marfan Syndrome, juvenille diabetes, congenital heart disease, MPS III, muscular dystrophy, lymphedema, and Prader-Willi. I've linked to organizations my friends know and trust.

Of course, traumatic brain injury is the condition I've lived with for the last ten years. I would love to see more money raised to education, prevention, early treatment for those who sustain TBIs, and assisting those who live with brain injuries. The organization we give to is the Brain Injury Association of America.

Oh, and in case you are interested, here I am getting soaked!

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How to Making Saving a Little Less Painful

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As is the case for so many families, this time of year money is tight. The typical money pits of Thanksgiving and Christmas bookend two additional spending occasions for our family: Sinterklaas (Dutch Christmas) and our son's birthday. If we aren't very careful, December can wreck havoc on our budget. 

Over the past few years, we tried a few different savings plans. I use PNC's Virtual Wallet to set aside money throughout the year for things like our son's preschool tuition and bills that are not paid monthly. I have had a harder time setting aside money that was not for a specific purpose. For some reason, I do better if I know the dollar amount I am trying to reach. 

Two years ago, we tried saving $10 a week. It worked for awhile, but we dipped into that stash over the year. About a year ago, I read about the idea of the 52 Week Money Challenge. It's been credited to both Montina Portis and Kassondra Perry-Moreland. 

I printed it out and referred to it as I set my budget for 2013. As you can from the chart, you save a dollar for each week of the year--$1 in week one, $2, in week two, etc.--until you reach a deposit of $52 in week fifty-two, for a total of $1,378 for the year. Pretty cool, eh?

Over the course of the year, I've seen Facebook posts about the challenge as friends as checked in to see who was sticking with it. That's when I started to hear about variations. I like the alternative that Saving Advice offers, which lists all the weeks at the bottom of the page, and you have flexibility to chose the amount you save each week, so long as you cross off all the week numbers by the end of the year. 

Please do NOT pin this image from our site. Please pin from the source. 

For our family--and apparently many, many others--was to start saving the highest amount ($52) and saving one dollar less as the year went on so that by the time we get to December, aka budget-bustember, we only have very small amounts to contribute each week. 

This worked very well for us. Even when we had to dip into our savings a couple of times, it wasn't too painful to catch up. In fact, I finished a little early because I wanted to use my savings to take care advantage of Amazon's Black Friday shopping. (Living with a brain injury means I need to avoid the malls most of the year, and especially during the sensory overloaded Holiday season. I aim to have all of my shopping done by Thankgiving and thank God for the convenience online shopping.) I will soon be the proud owner of a new Nikon 7100 DSLR Camera. I have been a very good girl!

I loved that I could make such a big purchase without using my credit card, so now that I'm starting to work on my 2014 budget (how is that possibly?!), I tweaked the challenge so we'd be officially done by Black Friday. And, with a little extra effort, plus one additional deposit on Tax Day, you'll end up with $1500!

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Both of these spreadsheets are available as free printables. Feel free to download, share, and use whichever one fits your family's needs in the new year.

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Build - Day ### - October 15, 2011

We haven't posted a lot recently mainly due to a lack of time in decision making processes, travel and health issues, but the progress on the house has not slowed down.

Since our last post the walls have been dry-walled and primed, the ceilings have been finished and all the electrical and plumbing is in as well. Next week we'll have regular power in the house as well and can say goodbye to the temporary pole in the front yard. Oh yeah, the drive way has also been poured, the furnace installed and with the installation of the glass block windows in the basement the building envelop is now sealed.

The items that haven't progressed much have been around cabinets and flooring. The quotes we've gotten were close to double the allowances so some soul searching and cost cutting methods had to be applied. We are very close in finalizing all of those items now though. We'll meet one last time with our kitchen cabinet supplier on Monday so he can get started and we'll meet with the supplier of the rest of the cabinets early next week.
Next Thursday morning we'll also meet with our 'trim guy', the master carpenter who will put the finishing touches on  the walls, windows and door openings.

So, here are a couple of pictures of the build as it stands this week.

Back-porch with the stone columns

Basement window, our manor stone and the back-filled electrical connector.

The walk way to the front door is elevated to one step only. A simple, removable one-step high ramp will be created  later to give us wheelchair access.

Good shot of the front of the house with more of the manor stone and the driveway.

Back-porch with the beautiful fall colors in the background.

Rainy day, but good shot of the house.

Close-up of our manor stone selection.

From the kitchen into the great room. More indoor pics to follow.

Money, Money, Money

We've yet to break ground, but we're getting a lot of requests for checks these days. In a perfect world, we would have had cash to build our dream house. In our reality, we were blessed to have the down payment and great lender who gave us a nice rate on a "story" loan--where they listen to our story instead of just looking at our credit score.

As we thought about how much we were willing to spend on a new house, my comfort level is a little more conservative than Niels', so my budget wins. Basically, I wanted to make sure that we could pay for everything on Niels' salary, and not depend at all on my SSA--except to pay down the mortgage early. That said, I wanted to know that if something happened to Niels' job, we could reasonably expect to swing the mortgage for awhile. Somewhere in there is our magic number.

We knew when we were approved for our loan how much "give" we had between Charis' estimate and what we could still get approved for after potential upgrades and overages. Our hope is that we can make double payments on the construction loan while the house is being built, and pay as much as we can out-of-pocket as we go along.

This turned out to be a great lesson in marriage communication because Niels was thinking that we would pay those charges as they came up (permits, fees, upgrades, etc.). I was thinking we would keep tabs on those amounts, and pay that much extra to the loan each month, giving us the flexibility to pay things off without amortization, but also the freedom to let things go to the loan if needed. Now that we've worked out that little "failure to communicate," we've been writing out a lot of checks this week:

$2,500 - Association application. We are moving into a development, so they get to approve the elevation of our house. This check is held until we finish the house as proposed, and have our lawn and landscaping done. Fortunately, we should get this money back.

$200 - Building permit.

$25 - Zoning fee/Dumpster permit

$538 - Real estate taxes on the lot (ouch!)

$ 120 - Changes to our plan. (One last round and we should be done!)

It's very painful to see our savings drop at such a fast rate. I keep reminding myself that this is what we've been saving for, and thanking God that we have the money to have this opportunity.