Last fall when I heard about the Ice Bucket Challenge I claimed to have felt bullied into donating since I didn’t want to make a spectacle of myself on Facebook. (OK, I was too lazy.) So while I was one of the two(?) grumbling Ice Bucket Scrooges we donated money without really knowing why or the specifics of the cause. Later that fall a New York Times article popped up on my Facebook feed. It was written by a young mom and writer who had ALS. Without the Ice Bucket Challenge putting ALS on my radar I would’ve skimmed right over it.

Sarah is smart, funny, quick to laugh at her own expense, stylish and pretty. She and I have daughters close to 5 (well, hers is 5 and mine will be soon.) Her experience of motherhood combined with her progressively terminal disease made me curious. I started reading her blog. Slowly I started understanding what the excitement was over the Ice Bucket Challenge – how huge attention and funds were finally being directed at one of the most devastating terminal illnesses around.

In a nutshell:

1. ALS (amyotrophic lateral sclerosis: a- means “no”, myo refers to “muscle”, and trophy means “nourishment.” The sclerosis part refers to the hardening or scarring. ALS occurs when the neurons connecting muscles to the brain degenerate. When the neurons die, the muscles don’t receive messages from the brain thereby atrophying. The muscles controlling motor movement are the ones affected. The ones that control walking, cooking, chewing, holding a cup of coffee, picking up a child, bathing, brushing one’s hair. ALS slowly paralyzes a person until they can no longer breath independently. It is a real life horror story.

2. There is no known cause and no cure. The only treatment is a drug which can extend survival by about 10% if taken early enough. It can cost hundreds of dollars a month WITH insurance and can give some people miserable side effects.

3. Most people with ALS die within 2-5 years of first symptoms.

4. ALS is sometimes called “The Bankruptcy Disease” due to the incredible costs involved in caring for a pALS (person with ALS). Not only does the equipment needed cost a lot (walker, support braces for ankles, power wheelchair, Hoyer lift, bed rails, bidet, home renovations to allow the wheelchair to pass through doorways etc.) but caregivers are not always covered by insurance. If the pALS has to stop working that income is lost too. It can cost around $200,000./year to care for someone with ALS.

5. ALS is not incurable. It’s underfunded. Because it is a rare disease it is grouped with other orphan diseases that generate little to no interest with pharmaceutical companies. Few patients = no profit.

6. pALS can’t advocate for themselves for long due to the loss of motor function. Their families can’t either due to taking care of their pALS. Imagine caring for someone who can’t scratch their own itch and needs help changing positions in bed, eating, getting bathed & dressed, putting makeup on etc. If there are children, add that to the regular chaos of caring for them. Some do all this while working full time. pALS need currently healthy people who are unaffected to advocate on their behalf (behalfs?) That’s where I come in.

7. ALS usually strikes people after age 50 but in Sarah’s case she was diagnosed at 33 with her symptoms starting earlier. Her daughter wasn’t even 2 years old. It can affect any of us.

In June Sarah started her #whatwouldyougive? campaign to see what people would give up to end ALS. Participants started giving up their voices, use of a hand or arm, one of her friends will use a wheelchair to take the BART to work. He’s started his own blog about it- the planning and challenges involved. All proceeds of her fundraiser go to ALS Therapy Development Institute, a non-profit biotech company devoted only to finding treatments for ALS.

As my part of the #whatwouldyougive fundraiser, yesterday I gave up the use of my voice for the day. Many friends, family members and even some people I don’t see much donated money to the fundraiser. Thank you!! We have gathered over $800 and still have another week left.

Stay tuned for my post on how yesterday went. Though it wasn’t a fraction of what an ALS patient goes through, it was eye-opening.

Sarah Coglianese’s #Whatwouldyougive? Fundraiser

I’ve been gone but miss writing my blog. Our family has needed us this year. Also, I’m trying to get some kind of third career going so that by the time the kids are in school I can make a little income.

In the midst of “being busy” (and wondering how much of this busy-ness is a choice?) I remember working crazy hours the year my mom got sick. I worked so much that if I ever got home “early” (like at 9PM) I had no idea what to do with myself. I worked most weekends too. Unless it was a client dinner I had no idea how to socialize or have fun. One night I had an anxiety dream in which my family was driving away from me and I couldn’t get to the car to get in before they left. Shortly after that my mom’s cancer was diagnosed and three months later she was gone.

Our friends have just suffered a huge loss – of a young mom/wife. We are in shock. Our hearts are broken and keep breaking for them.

By December I should have some free time back and I plan to protect it for important things.

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or of a season?

-Robert Frost

From “Reluctance”

Remember this poster?

That kitten = my family right now. We are struggling this past month or so. My dear father in law has been in the ICU for several weeks from a brain hemorrhage. In addition to that, add 2 ER visits, a nasty cough/bronchitis, a car accident (no injuries but car is totaled), stomach flu, and asthma.

Besides my father in law, things could be a lot worse. Even his situation could probably be a lot worse. Lucky for Medicare – an efficient government-run national healthcare program that works really well, he’s been receiving top notch care at UCLA. If he had been relying on private insurance my in-laws would be bankrupt by now.

Every spring I look forward to a newish tradition: our Easter Egg Hunt & Brunch. I have enjoyed planning & executing it for the friends we don’t see enough. It’s a really fun day for us and I’ve been wracking my brain every night trying to figure out how I can do it this year. But I finally concluded that it’s just not do-able this year. G’s turning 40 the day before Easter and I don’t want to be totally stressed during his birthday. I’d rather take the kids and let him go off on a bike ride that day. So it’s with great regret that I cancel our 3 year old tradition for this year. However, we’ll be back next year!! Mark your calendar for Easter 2014!

As for that adorable kitten, HANG IN THERE!

Last weekend G’s company sent us all to Park City which happened to be the last few days of Sundance Film Festival! We took advantage of Jack & Patsy’s stay by making them hostage babysitters.

Our moods were good right from the bar at LAX where we awaited our flight.

We had a great laugh about “No Side Shot” on the receipt. Everything’s funnier when you don’t have kids with you!

We cheered right out loud when we noticed our dear friend’s NYTimes Bestselling Novel, City of Dark Magic in the airport bookstore! Go, Lynchie!!

I was so impressed with this water fountain which was ubiquitous at the Salt Lake City airport!
You can either drink straight from it or fill your water bottle with it. Amazing!

We got up early the next morning to hit the slopes.

Whilst waiting for a cab to take us to Canyons Resort, I noticed some income disparity in our neighborhood.
The house in the foreground had smashed in windows in contrast to the luxury homes behind.

Anyone who knows me knows I will enjoy myself but not before feeling guilty about my good fortune.

This is the back of our townhouse.

Right across the street from us:

Finally we hit the slopes at Canyons.

So happy.

G & I skied all day! After the lifts closed, we stopped by The Umbrella Bar for a beer. A low alcohol beer.

We finally picked ourselves up & got out of there as the sun was going down.

Off to the Brickyard Dinner at one of the houses in town. This house sucked! It only had ONE elevator and the DVD player in the screening room was broken. LAME!

Poor lobster!

Dinner awaited!! We made up about 40 people so we took turns eating!

Nobody took turns drinking though.

Killed by 10PM.

As many of you know, the beer in Utah is 3.2% alcohol (4% alcohol by volume). This means you might tend to drink more beer than you normally would. Not so in my case. For me 3.2% beer = wine. I drank only wine after I noticed the mid-section bloating taking place. Others drank hard liquor.

After dinner we headed out for a drink in town & then back to our house up the hill. Many played foosball and/or went in the hottub but as many tired mama’s know, a vacation bed (i.e. clean sheets & nobody waking you with a shriek at 4AM to pull their covers up for them) looks better than sitting in a cup of hot skin soup (aka an overused hot tub) with a bunch of rowdy blokes.

Next day we slept late. Aggggghh!!! Yes, we slept till 9 o’clock!!! What a treat. Off to a late lunch & then a half day skiing in Park City. We could walk to the slopes from our house.

I skied the slowest I’ve ever skied before. Is middle age catching me?? I couldn’t see any features on the snow and worried about falling and shattering a knee. It was still tons of fun!

That night G grilled about 150 burgers & dogs on the grill. I enjoyed a beautiful & much needed salad prepared by Lisa (did not get a picture of it) as well as some homemade fries. YUM!

Having only 2 full days in Park City, we didn’t make it to any movies (“films” to you film festival aficionados) but we didn’t feel we missed out on anything!

Thank you, Brickyard!! You made my year!

of a balloon, that is, is a sad event in the life of a kid. But besides getting clocked in the head by a swing every child needs to experience this cruel (not to mention eco-unfriendly) rite of passage.

Lookit how happy she was before she let go?

Yesterday M told me she wanted a haircut and that she wanted it cut to look like her Aunt Charlotte’s and/or cousin Lydia’s. Since Lydia and Charlotte have totally different (both very stylish) cuts, we met in the middle. It was hard to believe that a little girl would WANT a haircut but Maddie has her own style and a strong sense of fashion so I wasn’t about to stand in her way.

We set out for the salon.

BEFORE (with a side pony)

This salon is so adorable. Let me interrupt myself to apologize for boring most of you with this post about my daughter’s first haircut. Nobody hates hearing about cliche parent experiences like this more than I do but gosh dang it, for some reason these little kids make even common everyday experiences fun!

Anyway, The Yellow Balloon has been in SM for ages.

I actually saw the salon from the car, pulled over & called. They told me to come right in! It was so totally friendly inside, well, actually kid-friendly inside.

Our stylist, Denise, was so sweet. She let M sit on my lap which I doubt made it easy.

M really enjoyed looking at herself. And the cookies they gave her. And the Cinderella flashlight. The tattoo & the lollipop. Oh, and she also enjoyed the haircut.

She took a quick ride in the car (which the owner insisted on paying for).

And we left!

She accidentally let go of the balloon later in the park and wept bitterly as we watched it shrink to a tiny dot. I understood how she felt as I watched them cut her baby hair off and sweep it away into a dustpan.

The Yellow Balloon
1328 Wilshire Blvd.
Santa Monica, CA 90403
(310)458-7947

Hours:
M 9:30AM-6PM
T, W & F: 9:30AM-7PM
TH: 9:30AM-8PM
SA: 9AM-6PM
SU: 10AM-5:30PM