Sunday, April 29, 2012

On our way, the sequel

By this time tomorrow, Malachi and I will be back in California for a therapy trip to the Anat Baniel Method Center. I truly didn't think we would ever do that again after last time, but through generous support from the Sparrow Club at David Douglas High School, we were able to take the chance.

I am more convinced than ever of the efficacy of the Anat Baniel Method and hope that I can make the improvements in Malachi stick a little better this time. It also seems like the universe is arranging itself to send me on this trip. It sounds crazy to me to write that, since none of this would even be necessary if the Powers That Be had prevented Malachi's brain injury in the first place, but it seems as though providence has been providing for us lately and urging us to take this trip. We only decided to do it two weeks ago, and already we were able to get appointments; out of the blue someone offered a free roundtrip airline ticket down there; and I even found the perfect carry-on bag in our garage today that my husband said a stranger simply gave him one day. Oh and get this, the cheap car service I had to order to get us to where we are staying wasn't available but the guy arranged a limo service to pick us up for practically the same price. (It'll be like when Sex and The City went to California, only I'll look like a pack animal with a baby strapped to my chest and all of our luggage trailing behind me.)

Lots of weird little details like that that seem to just be coming together. Makes me hopeful.

It will just be the two of us, Malachi and me. I'm excited (only one baby?) and nervous (only one parent?). I'll also miss Jaden and Matt. I bet I'll be shocked at how much Jaden will have grown.

So, in the interest of science (SCIENCE!), I took this "before" video of Malachi on the floor. As much as I talk about Malachi's disability, I think regular readers may have noticed how I almost always post pictures and videos showing him as normal as possible. But he's definitely not. And taking this video left me falling again. I try so hard to look at how far he has come, how bright and cute he is — all the positives and all the hope for the future. But sometimes it hits me so hard. My baby is almost two years old. He can't walk. He can't sit. Dammit, he can't really even roll over.

I really thought he would be doing more by now.

Hopefully soon I can say that he does.

Malachi at 21 months from Shasta Kearns Moore on Vimeo.

Stumbo Family Story
This post is part of the CP Connection, a monthly blog party for all cerebral palsy-related blogs! Click the above graphic to read more or participate in this blog party!

Wednesday, April 25, 2012

Wordless Wednesday: Science museum. With twins. Alone.

I thought it was high time I record the insanity that is taking two little boys to the local interactive science museum, especially when one can't move himself around. My solution? Strap a leash on one, strap one to my chest and keep only essentials in my pockets, no purses or jackets.

It's still pretty nuts, since Jaden runs every which way, but at least not having to hold and position Malachi allows him to interact with the exhibits a bit more than in a stroller.

They absolutely love elevators. All elevators.
They have a huge fit whenever we have to stop riding the elevator.

New Lego exhibit. Malachi likes the headless dude.

Yes! Back to the elevator!

Look at how well Malachi is using his pointer finger!

Saturday, April 21, 2012

Our Wedding, Our Love and the Soundtrack of Our Life

I've been thinking a lot about my wedding lately. Family friends are getting married this weekend, and wedding commercials are gearing up. MSNBC also recently told the sad-but-beautiful story of two 24-year-olds who married in three days when it was discovered the groom had mere weeks to live.

But, most of all, I recently received a copy of the CD I made as a favor for everyone at our wedding. (Both of our originals were stolen.)

Listening to that CD is like watching a favorite old movie you've seen a hundred times. Only the scenes that flashed before me were from my own life: the moment I fell in love with him, the time we spent an hour sobbing in the airport, the comfortable reassurance I always felt (feel) in his arms.

Our early courtship was a long and painful process. We had MANY break-ups and reunions in the tumult of our youth. For three years, he lived in Japan, and then I moved to France. No relationship could withstand those pressures.

Somehow, ours did. Not without a few broken hearts and broken promises, but it did.

I made the CD because I wanted to invite our friends and family into the soundtrack of our "movie." The songs came from different genres and had different messages but together they painted the complex picture of a relationship — one that wasn't easy or picture-perfect, but one that survived against the odds.

So when I slip in our CD, I'm transported back to the emotions I felt as we navigated our path to true love.

These songs tell our story remarkably well — and in more or less chronological order — so I'll shut up now and let them. I'm sure many of these songs are ones you've heard before, but I can guarantee at least one of them you haven't. If you want to know what any of them sound like, clicking on the link will take you to the YouTube video.

Walking on Sunshine, by Katrina and the Waves

Kiss Me, by Sixpence None the Richer 

Foolish Games, by Jewel

Do What You Have to Do, by Sarah McLachlan 

Come Away With Me, by Norah Jones

Yes, my husband had a horse-drawn carriage take me to the reception site.

When You Come Back Down, by Nickel Creek

Walk Away, by Ben Harper

So This is Goodbye, by Stina Nordenstam

Thinking About You, by Norah Jones

Ma Cherie Amour, by Stevie Wonder
I have to include a shout out to Divine Cupcakes,
not because it's my brother's cupcakery,
but because they are beautiful and DELICIOUS!!

Feeling Good, by Nina Simone (I highly recommend this video.)

Unforgettable, by Nat and Natalie Cole

What If I'm Right?, by Sandi Thom

Holding You, by Gretchen Wilson

Take Me the Way I Am, by Ingrid Michaelson

The Promise, by Tracy Chapman (This is the song I walked down the aisle to.)

I Wanna Get Married, by Nellie Mckay (A retro tongue-in-cheek lounge number that some may have felt was an odd choice for our First Dance. I loved how its vague sarcasm celebrated the longing I think most women — no matter how feminist and career-driven — feel for domestic life.)

Love Prevails, by The SGC Project (This was actually from an album from my mom's church with lead vocals by the beautiful, talented and now-semi-famous Halie Loren.) 

My First, My Last, My Everything, by Barry White (Of course!)

In addition to the CD, we also had a board that we decorated with pictures and parts of
love letters from over our very long courtship. In this one (from almost 10 years ago!),
Matt says he'll wait for me. Awwww....

All pictures are from my good friend at Jaime Valdez Photography!

Friday, April 20, 2012

My responses to 3 Wacky Questions for Indie Authors

Author Milda Harris posted an interview of me today! This isn't your typical interview — like this one — but involved some pretty creative questions.

Head over there to find out what color I would paint the sky, who I would want to meet if I could meet anyone in history and what would make me say:

"That's horrible! I need to rectify this situation immediately!"

Check it out!

Wednesday, April 18, 2012

Wordless Wednesday: Self-portraits

Sure, they can't talk, but they've already figured out the iPhone. They have their priorities after all.

Sunday, April 15, 2012

isn't everybody?

A blogging friend of mine who writes Adventures of Me has recently come up with a disability awareness campaign called #IAmDisabled.

The more I think about it, the more I think it's a great idea. The premise is simple. Take a hard look in the mirror and answer this question: What is something you can't do that you wish you could do? That's your disability. You are disabled.

To me, it is most powerful and effective if you can come up with something that other humans can do, although you can read here that the responses vary widely.

For me, I said that I would like to be able to speak more clearly so that my husband and others could understand me more of the time. I don't have a speech impediment, but I can mumble a lot. In fact, for New Year's I resolved to work on my speech, but ultimately failed. It did, however, give me a lot of insight into just how hard it is for someone like Malachi to change his habits even when it would benefit him and be easier in the longterm.

That's why I like Nisha's idea: it shows that disability is a spectrum and we are ALL on it to varying degrees. The construct I was given in schoolthese people are fundamentally different, so they need to stay over here, away from the rest of us — is not only untrue, it's not useful. By identifying the qualities in ourselves that are lacking, we demystify and, more importantly, de-stigmatize the world of disability.

So what is something you can't do that you wish you could? Leave it in the comments below and/or tweet @Nisha360 and be sure to include #IAmDisabled!

Monday, April 09, 2012

One can only rise from ashes

I'm not a religious person. Spiritual, yes, but not religious.

But I wanted to share something that's been rattling around in my head since yesterday, Easter.

In an NPR story I read, author Anne Lamont introduced the concept of an "Easter people living in a Good Friday world." She doesn't really explain what this means. Perhaps to Christians it's obvious, but I'm going to tell you what I think it means.

Phoenixes can only be reborn from the ashes. Jesus could only be resurrected after his crucifixion. Good can only come after bad.

Maybe this is true. I hope it's true. I hope this for the family who is grieving the second loss of a child. I hope this for the family whose ailing daughter received a kidney from a father who, as a result of the complications, is now hospitalized with brain damage and kidney problems. I hope this for my family.

I have to believe that these people are not simply going to suffer tragedy after tragedy. I have to believe that we can rise from the ashes. I've seen it done before, and I know it can happen again. It's our turn, now.

Do you hear me, God? It's our turn.

Thursday, April 05, 2012

Fundraising — bleh

I am being dragged kicking and screaming toward the conclusion that I have to ask my friends for money for my son. Not like the awesome-but-rather-underfunded $1,000 fundraiser I did last year. Like, $$-per-plate, silent auction, we-need-some-serious-cash fundraiser*.

I hate this idea. For several reasons. First, because the insurance company and the state programs — to whom you and I collectively pay tons of money in order to help out kids like Malachi — really ought to cover our preferred, and scientifically based, methodology. We truly believe it's better than the physical therapy they offer — and even our PTs agree — but it's a long, hard slog to get the peer-reviewed research needed to back that up. We are still fighting that fight, but while we jump through hoops, Malachi cannot go without it.

Second, it's going to be a ton of work and this is exactly what I feared my life would become — all about Malachi and his extraordinary needs. It's been two years now since I've worked and though I'm looking for jobs, I'm painfully aware of how few employers out there will realize that these years are those in which I've acquired a lot of personal growth, not to mention marketable skills. A new study out shows that mothers of children with special needs make an average of HALF what their counterparts with healthy children do. That despite the fact that special needs children have expensive needs. Judging by recent court awards, special needs children cost $3 million extra to raise, not to mention lost productivity when they become adults.

Third, I've always been very conservative with money and have managed to keep my family's head above water over the past two years with only one income and some support from parental figures. I hate that I can't "make it" on my own anymore, having depleted our savings and trimmed every expense I can think of.

But, fourth, I also feel like if I ask friends for donations, my budget is suddenly under public scrutiny. If I post on Facebook that I'm enjoying a relaxing weekend at a cabin in a resort area of the state, will I need to stipulate that the cabin is a friend's and through carpooling and food sharing, the entire weekend cost me just $30? If Matt and I manage to finally take a vacation somewhere sunny, will people think we took their money and spent it on ourselves? What about when our car finally kicks the bucket and we're forced to buy a new one? Will we ever get to have nice things again without feeling guilty or beholden?

So while I'm sorting through all these emotional issues, the fact remains that I need thousands of dollars for Malachi's medical expenses. This will probably mean a fundraiser at some point this summer and I'll need all the help I can get.

Anyone out there with advice or a willingness to take on a piece of our fundraiser is more than welcome to contact me!

* I should give a shout-out here to the kids at David Douglas High School, who have adopted Malachi as their Sparrow. Sparrow Clubs are an awesome program linking socially conscious high schoolers with needy kids in their communities. The high school is raising some unspecified amount money for him, we'll find out how much in mid-May, but we have had little to no involvement in the process. This is wonderful from the point of view of my schedule but it's also why I nearly forgot to mention them!

Wednesday, April 04, 2012

Wordless Wednesday:
Jaden, the Wonder Boy

Welcome to the Amazing Adventures of Jaden, the Wonder Boy! Every mom's favorite little helper!

He gardens!

 He helps prop up Malachi with pillows!

He sweeps!

... and, well, he is still a boy!


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