I Will Carry You, My Child

I saw this video on the blog of my new, yet dear friend, Keri.

I saw a clip about this amazing duo several years ago, and it touched me deeply then. I am so grateful to have come across this again, though. Now that I'm Chloe's mom, the message has a much deeper and more intense meaning to me. Let me explain....

Words from the video that hit home:

"He looked beautiful and he was strong.... he was having spasms."
"They were told their son... would never be able to walk or talk."
"We're gonna bring him up like any other child.... When they went to a beach for a swim, Rick went too."
"When you look in his eyes, and he was lookin' right at ya. And you could tell that he understood everything you were talking about."
"I may be disabled, but I live a very fulfilling life."
"You can. Anything IS possible."

Other parts of the video that hit home:

• The way he swims in the water - his body moves EXACTLY like Chloe's does in the water.
• The placement of his thumb (when they're first talking about the HOPE machine) underneath the pointer finger and over the middle finger - EXACTLY how Chloe holds her fingers.

The many hopes this video gave me:

• Rick went to school
• he found his voice, he talks and teaches other people
• he graduated from high school AND college
• he lived to be at least 44-years-old (The statistics say children with Infantile Spasms have a 60% chance of death before the age of 10.... it is more likely that she'll die before age 10 than that she'll live past age 10. Rick teaches me to not only look forward to Chloe's 11th birthday, but many, many birthdays beyond that!)
• he lives in his own apartment

Things this video inspired me to do:

• Continue including Chloe in every activity we do.
• Swim, run and ride bikes with Chloe more often so she too can feel "like the disability disappears." (Because of this video and Keri's example, we have signed up for a 5k in May. Oh my heck, do I need to get in better shape before May comes!)
• Definitely look into the HOPE machine (aka Tufts Interactive Communicator - TIC). Find one. Borrow one. Get sponsors to help me buy one. Whatever I need to do to get my hands on one and help Chloe be able to share her message! She has so much to teach all of us, I can hardly wait!!!
• Be the very best mother I can be.

And yet another way I could relate to this video:

To recognize how much my own Father in Heaven loves me.... that He is willing to carry me when I am unable to carry myself.

I am He who will sustain you. I have made you and
I will carry you;
I will sustain you and I will rescue you.
(Isaiah 46:4)

Against the Wind, by Liz Lemon Swindle

Introducing....

I've recently been very nostalgic and reminiscent. I'm not exactly sure what has brought this on, but I've been thoroughly enjoying looking back at old scrapbooks and journals. And now that I finally figured out the scanner we've had for over a year, I'm all set to get scanning.

Does anyone want to join me in the reminiscing rampage that's sweeping the nation? Well, maybe not the nation, but the blogosphere? Okay, well, at least my blog!

Introducing, for all to play along....



For my first flashback, I would like to share one of my favorite flashbacks. Here I am with my lifelong friend, Jamie, and our rugged snowman....


The facemask beard, the orange hunting cap, the empty fields in the background that are now jam-packed with subdivisions.... I love this precious memory!

Jamie and I grew up on the same street. We were born two months apart. Our brothers were the same age as well. We would always hang out at each other's houses. In the summers we would ride bikes and jump on Jamie's trampolene. In the winters, we would build snowmen (regardless of the many fashion faux pas's we committed in doing so), and there were occassional snowmobile/tubing rides. That was, at least, until my brother's speedy snowmobiling caused Jamie to flip off the tube and break her collar bone. Poor girl.

Jamie and I ended up being roommates for five years in our 20's. That started a whole new series of traditions and memories. But we always had this picture in a frame to remember our roots. It's a classic.

Want to play along? Do a flashback post and hop on the Mister Linky. The more the merrier!

A Thingy By Any Other Name....

Have I mentioned how grateful we are to the Rady's who gave us the stander? Oh my goodness, are we ever! But I keep forgetting to tell you all about....

this thingy that they also gave us. Thingy - I'm not sure what to call it. It's for sitting support. Any ideas what to call it? Anyway, here's Chloe sitting on her Bumbo with the support. She sat in there for about 30 minutes. That's one entire half hour that she didn't insist I hold her. That is amazing! Sometimes her head would get tired and flop over to the side, but then....

she would bring it up in midline again like the big, strong girl she is! But then....

it would fall over again. But, as you would guess, when she fell she would get back up again. She's determined like that!

And, I hope the cute Rady's don't get offended that we keep altering their fabulous gifts. We love them just as they are, but Chloe is a princess and needs things to be girly. So I've been trying to figure out what type of fabric to get to re-cover the sitting support thingy ;o). I looked at the fabric store at a lot of butterfly material (of course - this is Chloe we're talking about). There were some really cute pieces, but nothing jumped out at me. Plus, don't think I'm too big of a dork.... actually, you can, because well I am a dork.... I'm worried about getting a colored fabric because then when she's sitting in the sitting support thingy her outfits won't always match. I know, huh. RIDICULOUS! But truly, people, this is a concern to me.

But today I think I finally figured it out. As I was putting her cute damask pullover on, I realized - THAT'S IT! Black/white damask goes with everything! Plus if I get it so the black is the main color, it will hide stains better. And also, I could add embellishments like flowers, butterflies, hearts, etc, to go with the different seasons and holidays. And again, everything goes with black and white! I've been looking at a few fabrics on-line today and found these beauties....

Funky/retro damask from ebay. Love it!

And etsy never disappoints. How fab is this fabric???

So bloggy friends, what do you think I should call the support sitting thingy? Do you like the idea of butterfly fabric or damask? And which of the two damasks do you like best? Talk to me goose.

I Stand All Amazed

We sang the hymn 'How Firm a Foundation' in church on Sunday. The words to the 3rd verse have always been some of my favorites, but this Sunday they struck a new chord as I recognized they were more than just words. They are promises from a loving God, promises that have been fulfilled....

Fear not, I am with thee, O be not dismayed,

For I am thy God and will still give thee aid;

I’ll strengthen thee, help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

I could barely get out the words because I was overcome with emotion. I realized that His promises have been brought to pass through the goodness of others. Because the Rady family donated the stander, Chloe has been caused to stand.


"God does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other." ~Spencer W Kimball


Thank you again, Rady family, for your service. You have truly been an instrument in the hands of God. Thank you.

Did you notice the latest additions?....

luscious lips

eyes with lashes

and a butterfly mobile!

Go cast your vote and help us pick out a name for Chloe's monkey stander!

And this was a picture from the other day. I went to lunch with my long-time pal Janica and her little boy. Chloe and Preston were wearing unplanned matching shirts!

Chloe has a little crush on Preston. Can you tell???

Wordless Wednesday

Oby and I dancing on our wedding day, June 2006

Extreme Makeover: Monkey Edition

You've all met Chloe's monkey....

Isn't he cute? Yes HE is cute. That's the problem and my bloggy pal Amanda came up with a solution. She sent me an email suggesting I add some bling to Chloe's monkey and turn HIM into a fab HER. So I took Amanda's idea, and played around a little today. I rummaged through my scrapbook embellishments and this is what I came up with....

Suddenly the monkey is looking a little more Chloe-esque, don't you think? But there's two sides to the monkey, so here's the other side....

A necklace, a bracelet, a flower on the tail, an earring, and a little sunhat. Cute!

I felt so proud of the monkey makeover and went about my day. I set out for a PT appointment, a trip to the grocery store, etc. I put on coats, scarves, boots, hats. That's when I realized I had it wrong. I had Miss Monkey dazzled up really cute, but she wasn't dressed appropriately for the weather conditions.

So when I got home, we re-worked Miss Monkey's look yet again....

That's better! Side A is so posh and ready for the cold!

Here's side B. Isn't she a cutie!

Then I added some final touches to the tray....

I threw some egg noodles in for Chloe's tactual pleasure and sensory integration needs. Then I remembered Nana gave these letters to Chloe for her birthday last year, and I realized they were the perfect last touch! They bring all the colors together and give it that final flare it needed to make it Chloe's stander!

Which outfit is your favorite?

And more importantly,

what do you think we should name her????

p.s. Thanks for the ideas, Amanda. I can't imagine Chloe's stander any other way!

Invisible Mother

I received a forward from Oby's Aunt Holly awhile back. It touched me. I forwarded it to a few friends, hoping they would actually read it and not delete it thinking, 'Oh, Tara, not another forward.' I knew they would love it.

Thankfully, they read it. I know this because almost every single friend I forwarded the email to has called, emailed, done a blog post, or talked to me to thank me for sending this to them. Today I received yet another message, nearly a month after sending it, thanking me for sharing the story of the 'Invisible Mother' because it helps her make it through day to day tasks.

If you've seen this already, read it again and soak up the message. If you haven't seen it, prepare yourself for a treat....


I've added a little song as a soundtrack to the story. Have you heard of the band, "Jump, Little Children"? I love them....

Invisible Mother
by Mary Lynn Plaisance

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to somewhere. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this ? Can you tie this? Can you open this? Can I have some money?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' or I'm a car to order, 'Right around 8:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated college- but now they had disappeared into the peanut butter, never to be seen again.

She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England. She had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when she turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe. Initially I had thought, oh she remembered I wanted to travel this year. Until I read her inscription:
"With admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no button you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.'

A t times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the girlfriend he's bringing home for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies', that would mean I'd built a shrine or a monument to myself. I just want him to want to bring his friends home. And then, if there is anything more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Misadventures in Texting

Meet my cell phone:




I love my cell phone. I hardly remember how I survived and functioned in the world before I had a cell phone attached to me.

And texting. I love texting. I'm don't text a LOT, but there are uses for text messaging, and when those instances come up, I take full advantage of sending a text message.

There are occasions, though, when text messaging, specifically T9word/iTapEnglish lets me down. For those of you who might not know (ahem, Mom), T9word and iTapEnglish are used in text messaging so instead of hitting a key several times until you get to the letter you want, the phone predicts what word you are trying to spell.

When text messaging and especially T9/iTap were fairly new (man I'm old), a roommate and I were hanging out at our house when she got a text message from a guy she was dating. She wasn't in a relationship with him, and was dating more than one person. Anyway, the message she got said, "How was the hand?"

Oh my goodness. What does he mean? That could mean soooo many things. Did he see her on a date with another guy when they were holding hands? Did he mean something dirty? We spent hours analyzing the meaning of his message. She had to figure it out before she responded.



We were baffled. After days and nights of girl talk and analyzing the word hand, we finally went to her brother for advice. We went to her brother for advice often, since he was a single guy about our age.

"What does he mean by hand?" we questioned as we handed the phone so he could see it for himself.

"Game. He means, "How was the game?""

"What?!?!" We were still confused.

The last time she had talked to him, she mentioned she was going to a soccer game with her family. So he meant to send the message asking how the game was, but his iTap code picked up 'hand' instead of 'game' and he didn't edit the message before sending it.

We had a good laugh over that one!



And you might have thought I learned my lesson, but, well....

The last few weekends I've been getting together with the girl's from Oby's family for scrap booking. Good times. I wasn't sure if anyone was planning on coming tonight, so I sent a text message that said,

"Are you coming over for papas cooking tonight?"



My SIL Megan responded, "What!"

So I looked at the message I sent, and realized the typo.

"Oh, I meant scrap booking, not papas cooking!"

I wonder if I'll ever completely understand this new-fangled technology!

Cutest Swimming Suit Ever!

Jackie O. had nothin' on Chloe....

Even the boys liked Chloe's suit.


Gabe said, "I like red and I like red swimming suits."

Jake said, "I like red AND white!"

It was a hit.

So was the aquatic center we went to today. Man, oh man, did we have fun!

Chloe kicked,

laughed,

crunched,

and held her head high!

It was such a great workout for her, that she was sitting on her Grammy's lap with very minimal assistance afterward. Plus she looked very cute in her swimming suit! Oh, did I already mention that? Whoops!

Can You Believe It?

I started a class tonight so I can learn Photoshop. Yep, school. Well, a continuing education class, but it's in a high school. I was nervous about where to sit, what to wear, worried I wouldn't be able to find the classroom.... Who would I sit by? Would the teacher like me? I felt much like I did on the 1st day of Kindergarten....

I was going to write the year, but when I realized it was before Oby was even born, I just couldn't do it! ;o)

A Secret Garden

One of my favorite blogs, Women Doing More, highlighted a story today of a little girl, Stephanie, who had a wish granted through Make a Wish of Utah, where I once volunteered. The story and photos of her wish are in the lobby of the MAW center. Her unique "secret garden" wish, and the fact that she made a will (that included her gel pens), was undoubtedly one of the most touching stories I ever heard during my time there.

Go here for a news clip about Stephanie's magical garden. You'll be glad you did.

Thank goodness for spring!