Sunday, October 28, 2012

In the 'Tunnel' (Silent Sunday)

Malachi has crawling around so much lately. When he saw the coffee table the other day, he started chanting "Tunnel! Tunnel!" as he crawled under it. JJ thought that was a good idea and joined him.

I can see pillow forts in the not-too-distant future....

Wednesday, October 17, 2012

A Parent's Perspective (Cross Post on Notes from a Pediatric OT)

Thanks very much to Abby of Notes From a Pediatric OT for hosting me on her blog today!

That's right, that means you are just one simple click away from seeing:

Four qualities I look for in a therapist

Three resources I can’t live without

A word of advice for the parents of a child newly diagnosed with cerebral palsy

And much more!

Go over there and check it out! While you're there, feel free to poke around Abby's site. She has a lot of really great resources for parents, including an awesome Amazon store full of good present ideas for the special needs kids in your life!

Oh, and if you are one of Abby's readers, welcome! Feel free to poke around my site, too. We're all friends here!

Monday, October 15, 2012

The Return to a Normal
That Never Was

As I pedaled my way past house after house in the sub-development of cookie-cutter houses, a deep sense of longing settled into my chest. Not for the size of the houses, which were at least three times the size of ours, nor even for the relative opulence of their upper-middle-class trappings casually strewn about: cars, basketball hoops, etc. No, the longing I felt came when, on our family bike ride, we passed the open doors of garages with tools hung up neatly on white peg boards and plenty of open room for cars to park on gleaming concrete surfaces. I longed for that much order in my life, to have a garage that wasn't dark, dank and cluttered with years of items I have been too busy to properly organize and store.

They must have really boring lives to be able to spend so much time on their garages, I thought bitterly.

I tried to bolster myself with this thought and march on. But when my husband left with Malachi for another therapy trip to San Rafael, I decided to spend the week's worth of spare time cleaning out our garage.

It took me less than a day. Good grief taking care of only one typically functioning kid is easy!! JJ calmly followed me around and played with stuff as I sorted through the garage. Once, I heard him coming up behind me repeating a genuine question in his tiny voice: "A... hat? A hat? A hat?" I turned around and saw he had placed an old dusty wheelbarrow tire on his head and, yeah, it did look sort of like a hat.

By Wednesday of last week, my house was reorganized and spotless and I had regained some self-respect about my housekeeping skills. I started to turn my attention to our severely neglected front yard, but stopped myself.

Maybe I could have a little fun? So JJ and I went to the zoo and the children's museum without the encumbrance of a stroller. We ate out at restaurants without a care because he can sit in the chairs and eat everything on the menu. The world was suited to us, designed for us.

I took artsy-fartsy pictures of JJ, which I discovered is much more difficult than taking pictures of his brother because he moves around so damn much.

Life was so easy and we having so much fun that I began to worry how I would feel when Malachi returned. This was the life I thought I would lead: the one with only one kid. The one that was carefree. The one that allowed me to organize my life into the shapes that I found pleasing.

During our last day of this freedom, I took JJ to a movie theater's "mommy matinee." Like walking around and eating out, this is something we can't do very well with Malachi. He is terrified of anything dangerous or sudden, and movies with even a modicum of plot contain a lot of danger and suddenness.

But it turns out that JJ doesn't like movies with plot either. I guess I never noticed when I was distracted by Malachi's crying. After 10 minutes he was pleading with me to leave, so we abandoned the idea and went to a nearby park.

At the park (where I got to actually sit on a park bench instead of facilitating play) were identical twin boys, only a few months older than mine. I felt the familiar pangs of jealousy as I watched them play together and eat a snack together.  But it wasn't until I took this photo that I realized I wasn't jealous of their mother, with what I presumed to be her relatively easier existence, I was jealous of the boys.

JJ looked so alone that I began to realize the longing I was feeling was for his brother's companionship. Not a brother who could walk, or eat or do anything exactly like he can, but just a brother. JJ had been an only child for a week, but he was never destined to be an only child. He was always, always going to have a brother.

We returned home and as I looked around, I discovered that, in the days since Wednesday, the house had slipped back into its usual state of clutter. I went out to put something in the garage and even it didn't look nearly as clean as I thought it had before.

That was when I realized, this was my normal. That "normal" life I thought would have, the one with one typical kid, a tidy house and time to go on outings, that never was and never will be and I guess I don't really want it. This normal, the one I live every day, it's not perfect and it's not necessarily happy, but it is where I feel most comfortable. It's mine.

And, hey, at least it's not boring.

Stumbo Family Story

Thursday, October 11, 2012

Thank you, Sparrow Club

This thank you letter was printed at the request of the DDHS Sparrow Club. My family has been blessed by an amazing number of donations in the past six months, all of which are helping to fund Malachi's treatments. The Sparrow Club got the ball rolling and I'll be forever grateful to them.

Dear Sparrow Club students, faculty, sponsors and donors,

I am crying as I think of what to write in this letter. The Sparrow Club program was literally life-changing for me and my family and I don't even know where to begin.

I suppose to start, I must thank the 3,000 people packed into the DDHS gymnasium last May, every one of whom stood up to signal their willingness to help me and my family. Beyond any amount of money, that in itself inspired more change in the way I feel about my son's disability and our chances of everything working out OK. Standing in the middle of so many people from so many different cultures and beliefs all saying with their entire bodies that "yes, we want to help you," was the most powerful and beautiful thing I have ever witnessed. I will never forget it, and I don't think I will ever be able to remember it without tears in my eyes.

From that moment forward, I began to feel less fettered by fear and more empowered to ask my community for what my son needed. Before, I couldn't imagine going to my friends with my hat in my hands and worried endlessly about what they would think of me if I did. But the Sparrow Club showed me the enormous power of giving and its hidden secret: It feels good to give. People want to help their friends and neighbors through life's struggles, but they need to be given an opportunity.

So I began preparations for our own fundraiser for the month of June. I had written a children's book, called "Dark & Light: A Love Story in Black and White," and aimed to sell it through the online crowd-source funding platform Kickstarter. My lofty goal was to raise $5,000 in 30 days to start a business printing "Dark & Light," using the profits to fund Malachi's treatments in perpetuity. By the end of the campaign, we raised more than $10,000 and had five major media outlets, including The Huffington Post, do stories about the campaign. I am certain that this Kickstarter campaign wouldn't have been nearly as successful without my experience with the Sparrow Club.

But the lessons I've learned from these fundraisers haven't benefited only my family. I have also given several modest donations to other friends' fundraisers and have pledged 10 percent of "Dark & Light's" profits to be "paid forward" to other kids with special needs. Two $500 grants have already been sent. It is in this way that the Sparrow Club has made ripples throughout the community.

Before, I would have thought it was crazy for a person to simultaneously fundraise AND donate to other causes, but it is the strangest paradox — the more one gives, the more they get. I've learned that hoarding, consuming and even acquiring money never satisfies a person's desire for more — only through giving it away can we finally feel we have enough.

I also want to thank Sparrow Club sponsor Adidas for giving my family a $500 shopping spree at their company store!

At first, I was confused and didn't understand what I could buy for Malachi at a shoe store. Since he cannot walk, he rarely wears shoes. But then I realized that for once it wasn't entirely about him! My husband and I hadn't spent any money on our own wardrobes since the news about our boys and it still feels wonderful to slip into our new shoes and apparel. In fact, we had just begun our first exercise program since before the boys were born and I know that the prospect of putting on our new Adidas wardrobe was often a motivating factor in continuing the program. In this way, you have helped our entire family become fitter and healthier, thank you!

And thank you to the wonderful volunteers who sewed those beautiful blankets for the boys. They are just the perfect size and weight and they still use them every night.

Finally, I am sure you want to know how Malachi is doing after all of this fundraising towards his treatments. The combination of all of these efforts meant that we were able to take him down to the Anat Baniel Method Center in San Rafael, CA., a staggering four weeks this summer, broken into three trips. He is now talking, he knows his ABCs, can count to 30, and is eating a bit better. But perhaps the most dramatic difference is that during our trip at the end of August he finally learned how to crawl and has been doing so with greater and greater speed all across the house!

Thank you, thank you, Sparrow Club. And be proud, David Douglas students and sponsors. Without you, I am certain my son would not be doing as well, and neither would we, his family.

Shasta Kearns Moore

Friday, October 05, 2012

Ob-la-di, ob-la-da,
Life Goes On

Suggestion: Press play to listen to the song while you read this.

It was one of those mundane moments when everything just hits you.

I've had lots of those moments in the past two years and most of them were not good. Like at the twins' second birthday party when JJ and a boy about his age were running through the house, giggling nonstop, and I realized with a deep ache: "This is what having normal twins would have been like."

Or the time when I sat and listened to two mothers discussing immediate post-partum experiences and realized that — despite having had two children — much of the information they shared was new to me. Since my kids had been in the NICU for six weeks after their birth, I couldn't even think of a single thing I could contribute to the conversation that they wouldn't find frightening or at the least pretty awkward.

But today was different. Today, I got an e-mail from the printer for my new children's book Dark & Light: A Love Story in Black and White with this picture:

Wow. There is something just so exhilarating about seeing so many copies of my book. Perhaps you just see a boring shot of a pallet of grayish books, but when I look at this picture, somehow my bones feel longer and lighter and my heart quickens. This picture whispers to me: "I am an author. A real author." And, equally: "I finally have a long-term plan for Malachi's medical expenses."

Holy shit.

But the demands of today didn't allow me to dwell for more than about a minute on this picture. There was another therapy trip to California to pack for and children to feed and errands to run. Semi-typical mom stuff.

So it wasn't until this afternoon when I was folding laundry that the mundanity-induced moment of clarity hit me. The autumn sunlight shown through my living room curtains onto the beautiful brunette heads of my boys playing quietly together. Malachi was sitting remarkably well in his Bumbo chair while JJ sat next to him on the floor. Suddenly I had a flash of the first time I put Malachi in the Bumbo chair when he was a few months old and how he slumped over to the side instead of sitting up straight  like JJ had. It was the first time that I could really see that Malachi was disabled and I cried for a long time. I thought of how uncertain and terrifying everything seemed back then and how some (though not all) of my worst fears have now been laid to rest. I rejoiced in how much easier things are now than they were then and how much I've learned and how far we've come. In that moment, the present was truly OK and the future seemed bright and manageable.

As I silently beamed at this really rather boring scene, over the radio The Beatles jammed:

Ob-la-dee, ob-la-da, life goes on, brah!
La-la-la-la, life goes on...

Thursday, October 04, 2012

The politics of special needs blogging

Lately I've been having a hard time blogging. I've chalked it up to being ridiculously busy, which I am, but I think it's more than that. I've always been busy, but blogging was my stress release — not another chore, but something that gave me energy. Over the last few months, that's become not as true and I think I know why.

When I first started, I was mostly talking about my pain and my process and the new information I was learning as I entered this Brave New Special Needs World.

But even though the pain is still with me every single day, even I'm sick of talking about it. This leaves as one of my primary subjects the Anat Baniel Method, which is our primary form of treatment for Malachi. I like the method, but it's hardly perfect and if I say negative things about it, somebody on the 400-person forum I started might call me out. And if I say positive things about it, I risk alienating friends who have chosen the traditional route.

Even though a blogging friend of mine recently pointed out how great it is that special needs moms can freely celebrate each other's kids' accomplishments and are therefore out of the traditional Mommy Wars, there is an aspect of special needs motherhood in which this is really not true. The path that we have each chosen to help our kids achieve their personal best is so entwined with all the pain and loss and anger of the diagnosis, that talking about our choice of therapies can raise hackles or send someone into a quiet depression.

I have never been afraid to speak my mind, regardless of social restrictions like these, but it does turn writing about my life into work and right now, I have about all the work I can handle.

There are other things going on in my life that I would ordinarily be open about except that they involve a dramatic shift in our financial situation, which includes but is not limited to the Kickstarter campaign for Dark & Light: A Love Story in Black and White. Money is always a tricky subject. But I feel like I'm starting to have to commit lies of omission whenever I talk and I'm getting tired of it. I hate lying in all forms, even lies of omission, and even though some would say I don't owe you guys an explanation, I feel like full honesty is the least I can do for the kindnesses you've shown me. And I think the vast majority of you would be happy for us about these things, but I still worry that someone will begrudge us our good fortune.

Regardless, I've opened the can of worms now, so I guess I should tell you what I'm talking about. Remember how bad our car situation used to be? Well, about a month ago we financed a sleek and sexy 2009 Mazda 5. It's like a mini-minivan. It's got rolling doors and a third row of seating — which if folded down provides plenty of trunk space for all of our various accoutrements — but it's a small enough vehicle that it still gets pretty good gas mileage. And there's all these little things that are so much better than the 1995 Corolla we've been limping along with, like an auxiliary port for our iPhones, a self-adjusting heater/air-conditioning system, and warning lights that only come on when something is actually wrong. The wonders of modern engineering!

We thought very deeply about this car purchase and weighed all the factors, but eventually decided that this option was best as it offered the most value and would meet our needs for a long time to come. I hope I don't need to say what follows, but I will: absolutely no money from the Kickstarter campaign was, is, or will ever be used for this car.

Which leads me to Dark & Light. I have been spending the vast majority of my free time setting up my new publishing business, S. K. M. Publishing, in order to create a long-term source of income for Malachi's therapies. Since I don't physically have any of the books yet, I haven't "sold" any of them and therefore I haven't taken any profits.

So, you might be wondering, how are we affording all of these trips to the ABM Center in California? Well... get ready for a shock.

After the Huffington Post article came out on us, a man I have never met before contacted me and said he was touched by our story and wanted to help. He has helped out several other families with children with CP and he was wondering if he could help us. His only request is that he remains anonymous and in the background, so I won't talk about him much except to say he has dramatically altered our ability to pay for Malachi's treatments. I call him, with all seriousness, our Guardian Angel and he has revolutionized the way I see charitable giving. Now that you at least know he exists, I hope to be able to talk more openly about the insights he's given me.

And that's really why I'm writing this post and divulging all of these secrets. Because I do have posts inside me just bursting to come out but I couldn't talk about them freely with all of this baggage hanging around.

Wednesday, October 03, 2012

The beautiful and bizarre ways people find this blog

Like most bloggers, I am fascinated by my stats — the anonymous information Google collects about who you readers are, how many of you there are and where you come from.

In particular, I always get a kick out of the search terms that lead people here. I'm not very good about optimizing my site for search engines — I'd rather have an interesting or poetic post title than heading each one with "WHAT IS IT LIKE TO HAVE A CHILD WITH CEREBRAL PALSY? MOM REVEALS TOP 5 THINGS YOU NEED TO KNOW" (hmm... wait a second....)

So my most frequent search terms are for things like:

outrageous fortune
outrageous fortune blog
shasta kearns moore blog
shasta outrageous blog

Etc., etc. Pretty boring. But every once in a while one comes along to make me smile. Such as:

funny stay at home mom blogs   (Aw, thanks.)
art   (REALLY? How could my blog even be in the top 1,000,000 hits for "art"?)
feel better now mom cerebral palsy   (awww. I kinda do, now that you said that.)

Many of them would probably seem strange to you, but to me they are are obvious allusions to certain posts I've done:

brain injury "not funny anymore" for It's Not Funny Anymore
i hate social workers for Why I Hate Social Services (Social workers take note: I get a LOT of hits from this search term. Maybe you need to up your game.)
"tickle therapy" for Malachi's Many Cerebral Palsy Treatments
anat baniel method movement matters for any number of posts about ABM
ciao bella italia for Ciao Bella Italia!
cute pregnancy belly photos twin boys for 97 Percent or Would I Have Terminated My Son?
egyptian embalming techniques for Why Does Modern Medicine Throw Away Our Brains?
aren't natural conversations the elephant in the room? for The Elephant in the Room

Many others give me insights into the human condition:

i have cerebral palsy and need money
having a baby sounds like the worst thing ever     (hehehehehehehehehe..... yeah.)
quitting therapy by email
living with a brain injured son
the worst thing my husband has ever said
why people are so mean

And some of them are just plain bizarre!

deer antler + cerebral palsy    (huh??)
plastic triplet lens    (THREE hits from this. Three! What is this??)
art    (again! Really?? I'm honored, but...)

Then there's the seedy underbelly of the Internet.... porn. Really? What sort of searches for porn lead you to a stay-at-home mom's blog about her son's disability? Glad you asked:

ثثهىل فاث لاقثشسف Translation from Google: "Seeing the breast"    (Sure! No problem! Here's my post on the horrors of breastfeeding called Seeing the Breast Half-Full. Not what you were expecting, huh? I'm shocked.)
i sometimes fantasize about my son    (Move along, dude. SERIOUSLY.)

But here's the best one, which led me to believe it was finally time to publish this list of search terms I've been collecting because I have OFFICIALLY reached the end of the Internet.

hot girls with cerebral palsy     (YESSSSS!)


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