Welcome to my new home!

I’m still getting settled as you can see.   A few more boxes to unpack, curtains to put up along with some favorite art work.  I might even rearrange the furniture until I get it “just right!”

If there’s anything you’d like to see me add, don’t hesitate to let me know. Polls? Ads? More pictures?  Coffee? Wet bar?  Just let me know what will make you feel more at home.

Meanwhile, kick off your shoes, sit back and relax.  Stay as long as you like.

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Gimme Five!

The lovely Deborah from 5 Minutes for Special Needs interviewed me recently. You can read all about me over here!

Happy February!

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NaChYoMo: Throwing down the gauntlet

You’ve probably been reading or hearing a bit about NaBloPoMo and NaNoWriMo and thought, “Yeah, they sound really interesting but I’m not really into writing all that much,” or “I don’t have it in me to write something every single day.” Well, that may or may not be true —only you know yourself for sure.

However, these two campaigns have an element in common that even non-writers can benefit from. Both challenge the individual to dig down a little deeper and stretch a little farther than they think they are capable of stretching; the chosen method of challenge in these cases just so happens to be writing. If you’re a writer that’s a great thing; for the non-writers among us, fear not, there’s NaChYoMo —National Challenge Yourself Month! (Hey, it’s my blog! I can make up whatever I want!)

What if we each picked one thing that we struggle with or procrastinate about; something we simply don’t make a high enough priority to do? What if we each made the commitment to rise to the challenge? What if we pushed our boundaries or stepped just outside our comfort zones? Think of the changes we could affect in our lives, the accomplishments we could boast of, or the chores that would finally get done and crossed off that to-do list!

So, readers, I challenge you to join me in NaChYoMo. Here’s how it works:

Choose one thing —something difficult, something you’ve been avoiding or ignoring —that you want to accomplish this month and make a public commitment to do something each and every day in furtherance of that goal. It doesn’t matter what the challenge is. For some of us it might be an onerous task; for others it might be making time to pamper yourself. There are no rules except the ones you set for yourself.

Sounds easy, right? Betcha it’s not.

Are you up for it? Leave your goal in the comment section of this post —or post a link to your own blog —and tell us about what you want to accomplish and why it’s a challenge. If you need any specific support to make it happen, let us know that too. Then, go for it!

The rest is up to you to follow through or not. No one’s going to ask you to write about it every day (unless you want to, then, well you might want to consider participating in NaBloPoMo, too!). No one’s even going to check up on you unless you ask for that. But, I hope at the end of the month you’ll check back and let us know how you did so we can applaud your efforts!

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The personal challenge I am going to tackle is to do something every single day in furtherance of truly cleaning and decluttering my house. Truly. We’ve lived here just over three and a half years and are still tripping over unpacked boxes and miscellaneous piles of crap in our loft. Our filing system consists of stacks of papers and items strategically placed in the dining room, the living room, our bedroom. Ironically, Nik’s room is about the most organized in the house. If I’m brutally honest, our house has become a manifestation of our collective exhaustion and mild depression. The chaos is slowly eating away at us both.

We have had lots of excuses for not dealing with it once and for all. First, it was the fact that Nik was so sick for a while. Then, the not sleeping through the night for nearly two years. And let’s not forget Niksdad’s nursing school, or Nik’s many appointments for feeding, speech, PT, OT. Certainly, those things take a lot of time and energy; so does living in a chaotic environment. And the chaos, besides being mentally and emotionally draining, does not support our longer term goals of a nice home, home schooling our son, entertaining friends, and generally “having a life.”

Not anymore. This month, I am going to tackle one room at a time and finally get my house back. In the process, I’m willing to bet that I’ll get a whole lot more. I may or may not write about it here on the blog but I’ll share my progress with a few people; I tend to need the accountability to keep me motivated until the habit becomes ingrained.

I hope you’ll join me in my own version of the Na-blah-blah-Mo phenomenon. Let the journey begin…

Image courtesy of Inmagine

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Love makes the world go ’round

Well, I’m finally starting to catch up on some housekeeping items both IRL (in-real-life) and here on my blog. That post about Nik’s continuing awesomeness is in the works and should be up soon. Meanwhile, here are some lovely awards I’ve been given recently that I’d like to pass along.

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First off, I am embarrassed to admit that pixiemama gave me this thoughtful award**a while back; I bookmarked it and then forgot to follow up. (Oops…does that negate my qualification for the award??)

Before anyone has a chance to speak up and tell me that it does in fact disqualify me, I’d like to pass it along to some other special and thoughtful women. I don’t know if they’ve received it or not; if they have, well, they doubly deserve it then!

Joymama over at Elvis Sightings always manages to touch my heart in some way; She also, I think, shares some of my glass half full attitude about parenting and the world of special needs. Her daughters are a delight and I often find myself wishing they lived near enough to get to know in person.

My dear cyber friends Kyra and DramaMama both share amazing insights in beautiful ways; they also find so many ways to express their love for friends and family and fearlessly share their passion for living life to the richest and fullest —no matter how it might look in any given moment.

Gretchen is one of those bloggers who kind of flies under the radar but I always find myself either thinking or feeling deeply after reading her posts. She’s another one of those women I wish lived closer so I could get to know her better.

Pam, Rhett’s mom, shares the ups and downs of life with her family and parenting children with and without special needs. They’ve had a rough time over the past year or so but she nearly always manages to bring the focus back to the gifts and joys that her family brings. That always puts my heart back in the right place!

The second award was recently given by the awesome Autistic Bitch From Hell, affectionately known as abfh. I was thrilled she thought of me because, well, I love her blog! She writes funny, snarky, always insightful posts about civil rights, neurodiversity, and life over at Whose Planet Is It Anyway?

I’m supposed to pass it along to seven other blogs that I love but there are so many of ’em; it’s too hard to choose! Let’s see, there are some of my tried and true faves such as Mom-NOS, Kristen, Jennifer, Vicki, and Joeymom (ooh, she already got this one, darn!). Then there are some blogs that I’ve recently discovered or who don’t necessarily shine their light out from under that ol’ bushel…

Christine writes about life with her family which includes two adorable sons —one with autism and one without. She’s another homeschooling mama like me and I learn so much every time I read her posts.

I love reading Marla’s blog too. She writes about everything from life with her daughter, Maizie, and it’s inherent challenges to birthday parties for hamsters (or are the guinea pigs, Marla??). In addition to the gorgeous pictures she takes and shares, Marla writes with such clarity and depth that I always go back to re-read things to make sure I haven’t missed a smidge!

So there you have seven to check out if you don’t already know them! And, of course, for many, many more than seven fabulous blogs, pop on over to the Autism Hub. You’ll be glad you did.

**[This lovely award is created by Crystal @ Memoirs of a Mommy in honor of Noah and the donor of his sweet little heart who ENCOURAGES us to SHARE THE LOVE ! Thanks Crystal! (Click on Memoirs of a Mommy to learn and read this special love story!) The rules for this award are to pass it along to some people whose blogs you love. They make you laugh, smile, leave encouraging comments on your blog. You would like to share some love with them because they have uplifted, inspired, encouraged or prayed for you. Please include this paragraph with the link to Memoirs of a Mommy so that everyone will know where this award originated.]

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Sucked Under

I’m here. Honest, I am. I’m nearly recovered from my sister’s beautiful wedding; it was a very special time full of surprises like the arrival of cousins we haven’t seen in more than ten years, and making new connections with family we thought was completely cut off from us. (It’s a long story involving divorces and family conflicts which go back to a prior generation.)

Anyway, things are moving along at quite a rapid clip in our daily life. Nik is doing phenomenally well and I promise to write about it soon. Niksdad is also doing well; he just got another “A” in his classes. I’m quite proud of him; I truly think he may be up for valedictorian of his class at graduation in May 2009!

Me? I’m still recovering from the wedding. More accurately, from all the food and drink that have totally thrown my body into a state of distress. To make a long story short, I’m not diabetic but I have some insulin resistance stemming from polycystic ovaries (PCOS). Every once in a while I con myself into thinking that I don’t need to be careful about what I eat and drink. HA!

I’m trying to rid myself of the evil sugar/refined carbs monster which has taken over my brain and body and left me in a stupor.

I suppose it doesn’t help that Nik is teething now, getting molars, and has been waking at night in pain. Once the Advil kicks in and the pain is gone, he is wide awake and wants to play until all hours. Last night was 10:45 p.m. to 3:00 a.m. His sleep cycle is out of whack, mine is too and it just seems so hard to cobble together enough coherent thought just to make it through the day let alone try to write a blog post.

I’m getting back to my normal self bit by bit and resuming my workouts with my sister. That should all help…I hope!

Meanwhile, I leave you with this belated Wordless Wednesday image. I call it “Fantasies DO come true!” (Note for my visually impaired readers; it’s a silhouette image of Niksdad holding Nik in his arms and standing with the vacuum cleaner! LOL —Yes, he actually used it, too!)

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Withdrawal

I miss him already. I miss both of them already.

Tomorrow afternoon I am embarking upon a solo journey to visit one of my oldest, dearest friends for a couple of days. She will soon be moving to Switzerland to join her husband who has already moved for a new job. It is our last chance to spend time together before Niksdad starts school soon.

I’m not going far —just north of NYC —yet I feel like I might as well be traveling to Mars. I have only been away from Nik once since he came home from the hospital and that was a cross-country house hunting trip over Easter weekend in 2005. But this trip feels different in so many ways.

Nik is older and so much more aware of what goes on around him. He’s also going through a significant period of clinging to me and of needing me in the middle of the night. I know the time away will be good for all of us. Niksdad and Nik need the time to develop new ways of being with one another beyond just being pals at play; I need the time away to just be with my friend —and maybe even get some much-needed sleep!

Still, I worry because Nik doesn’t yet understand visual calendars and schedules and he definitely doesn’t understand the concept of time. I am always here for him, with him —ungrudging and without fail. How will he handle my not being there when he cries out in the middle of the night? Will he miss my singing along with Signing Time or Mary Poppins? Niksdad, God bless him, can’t carry a tune in a bucket.

Even worse, how will I handle not seeing his impish little face for two days? Will I survive not hearing his laughter or feeling his gentle kisses as he tries to bribe me into doing or giving him something he wants? Will my hands know what to do without his delicate face to cradle in the middle of the night?

It’s going to be a looooong stretch between tomorrow afternoon and Wednesday night when I get home.

And did I mention no internet access either? Might as well cut my heart out, eh?

*sigh*

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There are no words

In loving memory

Evan Kamida
July 30, 2000 – July 24, 2008

High Flight
by John Gillespie Magee, Jr.

Oh, I have slipped the surly bonds of earth,

And danced the skies on laughter-silvered wings;

Sunward I’ve climbed, and joined the tumbling mirth

Of sun-split clouds…and done a hundred things

You have not dreamed of…wheeled and soared and swung

High in the sunlit silence. Hov’ring there,

I’ve chased the shouting wind along, and flung

My eager craft through footless halls of air.

Up, up, the long, delirious burning blue

I’ve topped the windswept heights with easy grace

Where never lark, nor even eagle flew.

And while with silent, lifting mind I’ve trod

The high untrespassed sanctity of space

…put out my hand, and touched the face of God.

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ETA:

Services for Evan have been scheduled as follows:

Public viewing: Monday, July 28th 5 -7 pm

Memorial: Tuesday, July 29th 11 am

Cabot & Sons Mortuary

27 Chestnut St

Pasadena, CA 91103

(626) 793-7159

In lieu of flowers, please send contributions to:

The Pediatric Epilepsy Fund at UCLA

Division of Pediatric Neurology

Mattel Children’s Hospital at UCLA

David Geffen School of Medicine at UCLA

22-474 MDCC

10833 Le Conte Avenue

Los Angeles, CA 90095-1752

Please spread the word.

To express your condolences please go here. (Comments now closed on this blog post.)

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For my friends, with love

Don’t lose your way
With each passing day
You’ve come so far
Don’t throw it away
Live believing
Dreams are for weaving
Wonders are waiting to start
Live your story
Faith, hope & glory
Hold to the truth in your heart

If we hold on together
I know our dreams will never die
Dreams see us through to forever
Where clouds roll by
For you and I

Souls in the wind
Must learn how to bend
Seek out a star
Hold on to the end
Valley, mountain
There is a fountain
Washes our tears all away
Words are swaying
Someone is praying
Please let us come home to stay

If we hold on together
I know our dreams will never die
Dreams see us through to forever
Where clouds roll by
For you and I

When we are out there in the dark
We’ll dream about the sun
In the dark we’ll feel the light
Warm our hearts, everyone
If we hold on together
I know our dreams will never die
Dreams see us through to forever
As high as souls can fly
The clouds roll by
For you and I

If We Hold On Together ~ James Horner (recorded by Diana Ross)

To the friends of my heart, let’s hold on to one another in the darkeness as well as the light.

Sweet peace, little man. Sweet peace.

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Prayers wanted

It’s not my story to tell but one of our own needs some serious prayers tonight as her little boy is going through emergency surgery. Please just say a prayer for the little boy who’s in surgery right now. God will know who you mean, I’m sure of it.

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Grounded

Sometimes my instincts are as good as I think.

My sister and I go to the gym together at least four mornings a week; last night, not quite certain why I felt it so strongly, I sent my sister a text message to preempt our daily workout. Niksdad started a new job today —his first as an LPN— but didn’t need to leave until well after I would normally be home and showered. Nik has had a couple of bumpy days since we’ve begun to increase his Lamictal in preparation for weaning him from the Depakene for his seizures. (You may recall my recent revelations about the 18-month long saga of Nik’s mysterious, debilitating pain?) We’ve seen a recurrence of some of the disorientation and ataxia, as well as a marked decrease both in his appetite and his ability to cope with sudden, unexpected change.

Little did I know when I listened to the voice in my head last night that I would wake this morning to a very sick little boy. His usual happy morning singing and chirping were notably absent —replaced by whimpering and moaning instead. When I picked him up, Nik was burning up and his eyes were glassy. I’m fairly certain he has another ear infection —a whopper this time. His fever spiked to 103.7 degrees Fahrenheit and the poor little guy has passed out in the middle of the floor while playing with one of his favorite toys.

We see our pal, Dr. Mary, this afternoon.

Meanwhile, since I am not out racing around to Nik’s various appointments and such, I have time to catch up on a few blogging related things. You know, making lemonade and all that…

If you aren’t familiar with Alltop go check it out! It seems yours truly has “made the grade” and is included in their aggregate listings of “top sites” for autism on the web. I am honored to share the stage page with the likes of Kristina Chew, Vicki Forman, and a host of others. Just goes to show, there’s a little something for everyone out there!

Kind of makes up for my feeling like the kid who’s grounded while all her friends get to go to the prom BlogHer. I am so down that I cannot make the trip to meet up with some of my absolute favorite bloggers this side of the universe. Alas, I guess I’ll just have to continue my little boggy crushes from afar.

*SIGH*

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