Stella’s latest material

I’d like to share with you Stella’s first original joke, complete with killer timing thanks to a dramatic pause:

“My favorite color is…  BWIP!”

I’m sure that, like Stella and I, you’re laughing hysterically at this point. Catch your breath before I deliver the punchline.

“BWIP’s not a real color!”

And sometimes she’ll throw in:

“I don’t see any BWIP crayons!”

What I find so wonderful about this, besides the obvious comic genius, is the imagination and creativity involved.

It’s clearly very fun to be two, and to have a daughter who’s two.

 

 

Thank you

So many times, comments from visitors have made me cry. Made me feel like it’s all worthwhile, and that life is just wonderful. You give me hope. You give me faith in the world. Thank you to “CJ’s mommy,” whose comment I pasted below, and to all the other amazing parents who’ve taken time out of a crazy, stressful time in your life to leave a comment here. This is not meant as a pat on the back to myself, which is how I worry it will come across, because while this is a message of gratitude to me, I am even more grateful. I am in awe of some of the stories that I’m seeing here in comments. This is good for my soul and I feel it in a very real way. You have no idea how much your words mean to me! Much love to you all. Again, I say, “Thank YOU!”

“It has been a couple months since I last wrote, and I just wanted to say how grateful I am to everything you have written about tube weaning. I found so much support from everything you wrote. We have been involved in the Graz program for 6 weeks now and Cason is doing absolutely amazing. I am so thrilled and when I look at him eat and put just about everything in his mouth I can not believe just 6 weeks ago how LOST I was! You gave me hope, thank you!!
Thank you.”

The eyes don’t have it.

I’ve always been proud of my perfect vision. I’ve bragged about it openly, and came to appreciate it even more after Stella’s visual challenges revealed the complexity and wonder of human eyesight. “I’m so lucky and blessed,” I thought, darting my hawk eyes around to appreciate my crystal clear view of life. Turns out it’s not that simple. News flash: My vision is decidedly imperfect. And if I hadn’t been so blinded by pride, perhaps, I would’ve realized it a lot sooner. But the realization didn’t come until Stella’s in-office vision therapy session today.

If you saw one of my recent posts at Little Four Eyes, you know about Stella’s experience with the quoits vectogram and how it showed that she can see in 3D! Well, today we did the same exercise, with a twist, and it showed that while Stella has a decent amount of stereoscopy, she has a hard time recovering 3D vision if the therapist “breaks” the illusion and then brings the sheets back into place for stereoscopic viewing. It takes Stella a long time to re-fuse the images after briefly losing fusion. It’s something we can work on, and greatly improve, according to our vision therapist. I feel confident that Stella will overcome this issue, and it helps that Stella was a rock star during vision therapy today. Her hand-eye coordination has come so very far. You should have seen her throwing beanbags into squares, tracking fluffy bumblebees, honing in on moving light-up targets, and stringing beads onto wobbly string! A thing of beauty, I tell you! Because of her improvement in this area, I’m now to shift our at-home vision therapy efforts toward making her eyes work across longer distances. Don’t ask me how I’ll capture her attention across the room. At times, I can barely achieve this with my face directly in hers. A way will be found, after much frustration and shouting in a chipper voice and bribing with chocolate chips. Or whatever.

At the end of today’s session, in an effort to help me understand the quoits vectogram, Stella’s vision therapist let me put on the polarized glasses and do the exercise myself. Drum roll, please… My performance was shockingly poor! And you know, I could tell before the therapist said a word. During the exercise, I sensed that it was taking my eyes (brain?) a long time to fuse the images. Simply put, it was difficult. “Maybe I have a vision problem,” I thought out loud, barely believing my plainly less-than-perfect eyes. According to the vision therapist, Stella actually performed better than me on the initial fusing of the rope circles! It took me longer! It seems I suppress input from one of my eyes when challenged to track closer objects and movement, but my eyes don’t cross the way Stella’s do. I’m guessing that’s because I don’t have Stella’s farsightedness, which puts extra stress on her eyes.

I was in shock! Sort of. But then I thought about a few incidents, and the testing results made sense. When I was in middle school, I tried refereeing a little kids’ soccer game. Fresh air, sunshine, control over younger humans–it seemed like the perfect way to earn money! But I forgot to add “barrage of insults” to the list of perks. The parents hated me, and heckled me like Red Sox fans at a Yankees game. It. Was. Brutal. They were a-holes, yes. But they weren’t wrong that I sucked. I absolutely could not follow the action close enough to make calls. Apparently, as the parents of one team made painfully clear, one kid was checking everyone else constantly. Oh I tried. But no matter how close I got or how hard I tried to lock my eyes on him, I just could not see what the parents were seeing. I couldn’t follow along, couldn’t catch the little movements. In a way, I felt blind. Clueless. Didn’t help that the parents turned me into their punching bag–that doesn’t tend to sharpen performance, you know? I still fume when I think about that, and if I could rewind my life and go back to that fall morning, I’d handle the scenario soooooo much differently. It would’ve involved a string of obscenities and several disturbing gestures. Perhaps assault with a deadly whistle. Nothing those kids didn’t see at home with their wildebeest parents, I’m sure.

Come to think of it, the same tracking issue plagued me during my sports career. Basketball was my passion, but I played pretty much on instinct and with general, big-picture court awareness. I swear that I never actually looked at anything in particular. I didn’t look at the basket when I shot, I didn’t look at the ball directly as I caught it. I didn’t look at my receiver when making a pass. Never actually even saw specific people in front of me while running a play as my high school team’s point guard. It worked out okay, but I was limited. I always wondered why I couldn’t get to the next level and become a really savvy, strategic player. I had the feeling that there was a deeper level of the game I couldn’t access, and it was frustrating. My husband doesn’t have that problem. He’s a fantastic, very tuned-in point guard who can watch individual players and movement and see the small details within the flow of the game. All I had was a very general sense of what was going on. Even though my eyesight has always been 20/20, somehow, it was foggy.

I now hope that, when all is said and done, and vision therapy and patching and early childhood are behind us, Stella will wind up with better vision than me. With her glasses, anyway. I couldn’t be happier (or prouder) about that possibility.

Excuse me while I go schedule an eye exam. For me. How refreshing.

 

 

 

A quick chat with Stella

Me:  “Let’s get ready for swim class!”

Stella (pensive):  “There are babies in the water… I’m a baby.”

Me:  “Well, you’re not such a baby anymore. You’re getting so big!”

Stella:  “I’m getting HUGE!”

Me:  “Yes, you’re growing every day!”

Stella (dreamily):  “I’m a flower.”

Me (smiling ear to ear):   “Yes! You are.”

Hoo! Boo! And booyah, too!

A seven-year-old ninja told her she was a hoot. Success!

Stella fell in love with Halloween. She said “Trick or Treat” and “Thank you” and “Happy Halloween” at all the right times. She noted and appreciated everyone else’s costumes, even the less impressive ones. Like the dad whose costume was simply his regular jeans and flannel with an orange T-shirt featuring a simple jack-o-lantern face. “He’s dressed like a pumpkin.” Regarding the little girl dressed in an over-the-top gorgeous, homemade cupcake get-up? “She’s dressed like a cupcake.” Everyone was dressed like something, even if they weren’t, and Stella narrated every detail in an objective tone. She went trick-or-treating for about two hours. At stores and at houses and at the zoo. It was a very full and wonderful day. Honestly, I used to hate this holiday. I now adore it.

Everyone fell in love with Stella’s costume. Which I made, thanks to fabulous inspiration found in alphamom’s “Last Minute Kids’ Owl Costume” post from last year. I’m kind of embarrassed at my level of pride. When asked if I made her costume, I’d absolutely exclaim with glee, “YES! I DID!” What can I say? It’s the most creative thing I’ve done in years. Along with our jack-o-lantern crew, which represented an organized, thoughtful creative collaboration with Cody. Involving brainstorms, sketches and check-in meetings. We should totally start an agency specializing in pumpkin advertising. I’m going resist saying it would be such a hoot.

A new take on "boohoo"?

Anyway, instead of an owl mask, which Stella would not tolerate for more than five seconds, I came up with an owl hat. I found a secondhand fleece Gap hat at a consignment store, removed the pom pom, turned it inside out to get a plain brown canvas, and crudely hand-stitched some buttons and pieces of felt to the front so as to create the owl eyes and nose. As alphamom suggested, I used fabric glue to attach the feathers to the shirt, because I don’t own a sewing machine and haven’t used one since middle school. Again, the sense of accomplishment I got from this was out of control. But the best reward was seeing Stella running around, flapping her arms and hooting in delight.

Speaking of rewards, besides candy and owl-inspired antics, Stella’s vision therapy seems to be paying off. I just wrote a post about her recent breakthrough. So please check out my latest post on Little Four Eyes to learn all about quoits vectogram and the therapeutic value of owl feathers.

Hope your Halloween was wonderful, too.

A crime of passion. A lesson for us all.

It happened in the glow of our large flat monitor with the two dead pixels, which have long taunted us with their bold red hue. Stella freaked out, both passionately and oddly, flailing her arms around her head and wailing out of apparent discomfort. A powerful emotional display for a fit based on what seemed like extreme annoyance, rather than searing pain as an onlooker might have assumed.

She screamed, completely outraged, “I’M TOO BIG FOR THIS!!!” If she’d flowed into a monologue, I’d have heard rants about deep injustice and the heavy hand of parental control squashing her inalienable rights and unflinching conviction that she is no longer a baby. I’m sure of it.

Or was it more simple? Was she referring to the “Elmo Rides a Tricycle” video we were viewing together on YouTube? Was I insulting her intelligence with this media selection? It was eye patch time and Elmo had never failed to secure her cooperation. Were those days over? Or was he the inspiration for her rebellion? After all, the tricycle song is not about the act of riding so much as it is about freedom. Something I’d considered innocent now appeared insidious. Questions raced through my mind while those dead pixels continued their mocking stare.

But then, as quickly as the storm erupted, it passed. She went back to scrutinizing Elmo’s amusing antics, entranced once again by his simple joy. It was as if her tantrum switch had been flipped suddenly to “OFF.” I breathed a sigh of relief, and left the room to go prepare myself for our errand-filled morning. Crisis averted.

Or was it? When I came back, the meaning of her earlier, indignant outcry was shockingly clear. There on the floor, next to the stained office chair where she was perched, was a gory spectacle. Her beautiful French eyewear lay dead, brutally squashed and ripped into two damaged pieces. DOA. The hinge on the right cable had not only been stretched back far beyond its capacity, but also twisted violently. Horrifying. And she’d waited until just the right moment, after I’d departed, indicating premeditation. The office, once reserved for couch cushion bouncing and mindless online escapism, had become a crime scene.

But, dear jury, was Stella the perpetrator or only a victim herself? She had experienced a huge growth spurt in recent months–why did I not realize this would include her head? Oh I’m fooling no one! Dear God, I must confess! I knew Stella’s glasses had gotten tight. I knew! But I did nothing. I stood by while Stella’s head was squeezed mercilessly by those spectacles. Now we’re all paying an emotional and financial price. For shame, mother. FOR SHAME.

As we lay Stella’s ninth pair of glasses to rest, I’m compelled to help others learn from this tragedy. If you’re child says they are too big for something, they mean it quite literally! Size up for Christ’s sake!

I rest my case.

It’s all fun and eye games until someone attains 20/20 visual acuity in her left eye.

Toothpicks in a tea cup.

Toothpicks in a tea cup.

Eye strainer.

Eye strainer.

Candy spears.

Candy spears.

It’s amazing what you can do with a few markers and a tea cup. Oh, the simple addition of a tea cup seals the deal, my friends.

Overall, home-based vision therapy is getting easier as I find and engineer more and more exercises that she enjoys. Yes, enjoys! She still asks to play “eye games” at times, which means she gets excited about putting on her patch in order to play said games. I still do a dance of joy in response to this, tripping over myself to get it all set up before she loses interest. I feel like a genius at times. At others, a pathetic subservient fool. But of course, I’d do anything for this kid. Like that time many, many months ago when I used pinking shears to cut the edges of many individual carrot slices, because she was happily wolfing down the jagged-edged ones out of take-out Pad See Ew but not the smooth round ones I’d been making. (And no, she still didn’t eat them.) Thankfully, I’ve come a long way since then. I think/hope.

As you saw above, I markered up some toothpicks and a strainer, and guess what? She loves to send those little candy-colored bits of wood through the little matching holes in the dome. Our vision therapist gave us foam beads which also pair up nicely with the toothpicks, forcing Stella’s left eye to work hard in coordination with her hand and encouraging her brain to accurately map spatial relations and whatnot.

Stella continued to be actively disinterested in catching that damn balloon. So I drew a smiley face on it, and her willingness to look at it instantly shot up by at least 50%. Hope and Sharpies abound.

What a difference a smiley face makes.

What a difference a smiley face makes.

Meet the brave and amazing Ava.

Clearly, Ava's pretty fabulous. (And she just so happens to be the #1 fan of Yo Gabba Gabba in all the world.)

I’d like to introduce you to Ava. For Ava and her family, tube feeding is a precious gift. I wanted to share her story with you all to show the other, positive side of tube feeding, and to try to help send more supporters her way. She and her mother deserve the biggest and most raucous cheering section possible.

I’ll let Ava’s mother handle the introduction. From Ava’s CaringBridge.org journal, updated regularly by her mom:

“Ava is a smiling, laughing, dancing 5 year old diagnosed with a mitochondrial disease.  She loves school and dogs, the computer, and her family, who love HER more than anything in the world.  She’s dealt with so much more than she should know, but takes it mostly in stride with an amazing attitude.”

Ava’s diagnosis came after four years of dealing with a host of serious issues and symptoms, from severe GERD to dysmotility to cardiac arrhythmia to hypotonia and on and on and on… a string of conditions that for so long had no concrete explanation. By then she’d experienced an incredible number of  invasive, life-saving procedures including placement of a G-tube in 2006, followed by a GJ the next year. Finally, a very specialized type of biopsy revealed her true diagnosis. Mitochondrial disease comes with a sweeping range of challenges. To hear the description of the condition is to be haunted by it. From umdf.org, the website of The United Mitochondrial Disease Foundation:

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.”

Clearly, mitochondrial disease takes a vast toll, poses daunting and often heartbreaking questions, and total vigilance is required on the part of caretakers in a non-stop effort to maximize quality of life and encourage and prolong vitality and well-being. Tube feeding is one of many types of ongoing support that kids and adults with mitochondrial disease often require for survival. The type of strength and dedication and refusal to settle that Ava’s mother has demonstrated is impossible to capture in words. Ava enjoys the best possible quality of life given her condition, and tube feeding is essential to this. Look at the photos on her site and you’ll see a vibrant, adorable, happy child. And that smile! Oh my goodness. I imagine that to her mother, Ava’s wide-as-can-be grin is the sweetest reward, the best confirmation of her good efforts, the fuel that feeds her soul. Ava’s mother has continuously and tirelessly pushed for the very best options available, proactively searching out any and all treatments and therapies and support for her sweet child, and diving headfirst into the crusade for a cure through her involvement and leadership within The United Mitochondrial Disease Foundation.

This woman and her daughter are the kind of people that should be celebrated in our society. Why is it that with all the soundbites constantly buzzing at our ears and eyes, we never hear about the Avas of the world, nor their heroic mothers? Love this strong deserves a spotlight. I’m shining a little one on it, and I hope you’ll join me. Post a message of support in Ava’s guestbook–I dare you to resist that smile.

In closing, a well-chosen quote I found on Ava’s site, which seems to sum up her mother’s philosophy:

“Listen to the mustn’ts, child.  Listen to the don’ts.  Listen to the shouldn’ts, the impossibles, the won’ts.  Listen to the never haves, then listen close to me… Anything can happen, child.  Anything can be.”
— Shel Silverstein

Cirque de Okay

My official assessment is that this week’s in-office vision therapy went well. It was interesting, and eye-opening. (Once again I’ve let you down and resorted to puns.) Eye-patched Stella threw a couple blocks in frustration and engaged in impressive evasive maneuvers, but we managed to reel her back in while avoiding a fight. We totally persevered. It felt like a small victory for all of parentkind.

Helpfully, as the session got underway, the vision therapist answered all the questions I’d been asking, having gathered input from the doctor in order to do so thoroughly. And from there, she wisely kept things moving right along from exercise to exercise. In that way, Stella’s in-office vision therapy equates to a miniature three-ring circus with acts designed to mesmerize only toddlers. Imagine a large beating drum in the background and super dramatic announcer voice: “AND NOW, the great spinning disk of wonder three inches off the ground!… gasps and applause… AND NOW, the neighborhood’s tallest block tower, assembled and destroyed before your very eyes!… more gasps and applause… and now, feathers falling from the heavens… entranced silence, some “oohs,” then applause… etc. etc.!”

Here at home, Stella’s vision therapy is also a circus–one in which the elephants, lions and monkeys have escaped and are trampling the ring master and audience. It’s almost impossible to keep the show going for more than three minutes, so we do home-based vision therapy in small stints or whenever she shows interest. Sometimes, she even asks to do eye patch games! Yep. My heart almost stopped the first time she requested vision therapy. In order to better seize these moments, I pre-cut and keep handy eye patches of Magic Tape that I can quickly slap on her glasses’ right lens. Previously, I’d to stop the presses, take off her glasses, put two pieces of tape on the right lens, then carefully and annoyingly cut off the tape edges around the lens resulting in tons of tiny pieces of tape stuck to my fingers and scissors which is utterly unhelpful when you are in a major hurry in trying to take advantage of a very small window of  toddler attention.

At this week’s appointment, opening acts included a matching game–simple but smart in that it forced Stella to hold an image in mind and then scan the floor for its equal. Then, there it was. The therapist brought out this large spinning disc with slim, straight back and white stripes. On this briskly rotating table, the size of a super duper extra large pizza, the vision therapist placed some small colored blocks. Stella’s job was to snag whichever color the therapist dictated. It took a moment to teach Stella to resist grabbing the disc and to only touch the blocks. “Okay, Stella! Get the red block! No, not the table, the red block! You can do it!” She got a couple, placing her hand on them and slowly dragging them off the disc before falling into what looked like a state of hypnosis. So I put her in my lap and gave her a little pep talk/verbal assistance.  I did not, of course, help her get the blocks off the disc. I did say, “Ooh… here comes the blue block… here it comes…. here it comes…” to help keep her engaged and tracking. She got through about three rounds of this exercise (six or so blocks per round)–HOORAY! It was clear, and interesting, to me and the therapist that this was extremely challenging and exhausting for Stella. She almost fell asleep as the therapist stashed the disc away, a marked change from her energy level immediately preceding. We’re talking a full-on daze and string of yawns. Those moving stripes forced her to work so hard to focus, and it took a lot out of her. Even with Stella’s frustration level climbing higher due to fatigue, we plodded steadily through more “eye games.” But she did all the exercises presented. Some more easily, accurately, and agreeably than others. But she hung in there.

The imposing disc of wonder wasn’t the only overt difficulty. In particular, Stella seems quite uncomfortable tracking things that fall from just a couple feet above (with her left eye, anyway). She doesn’t even want to look up for the “balloon game” anymore, wherein I simply toss her a balloon from my standing position so that it falls right toward her hands for catching. But with a small but fun bit of dancing around with scarves and feathers, the therapist got her to follow their descent with her eyes and catch, with me holding her arms to receive them. Chalk up another victory for Stella’s left eye! And hope and sanity.

The session–the stretch following the disc exercise, anyway–reminded me of my basketball-playing days. Early on I was taught to practice free throws after games or drills, when my arms and body were nearly depleted. Because that’s how you get good, that’s how you become consistent, that’s how you hit the winning free-throw at the end of a long battle of a game. “Stella’s left eye is going to be a champion and leading scorer,” I thought! But that’s not QUITE how it’s going to work with Stella’s vision therapy at this point. The therapist noted that she’d save the more tiring exercises for the end of sessions in the future, so as to lower Stella’s frustration level throughout. This makes total sense, doesn’t it? It’s important for Stella to feel motivated or at least willing to go on. If she starts to feel more defeated than successful, her resistance would surely skyrocket. No, thanks!

This week’s vision therapy appointment granted me a couple realizations. First off, good vision therapists and good mothers have a core attribute in common: a careful balance of assertiveness. You can’t use brute force and you also can’t let the kid off the hook. You have to be firm, consistent and persistent, while mindful of the temperament of the individual child. Secondly, the fact that certain exercises are so uncomfortable for Stella made me understand how hard sports or perhaps even reading would likely be for her without the help of vision therapy. I don’t know if we’ll achieve visual perfection, but I have faith that Stella and her eyes will be very much okay.

With feathers, spinning circles, constant encouragement and gentle but insistent correction, we are preparing Stella for the visual demands that lie ahead in the circus of life. “…AND NOW, the social interaction and focus-requiring structure of preschool!… hearty applause… AND NOW, organized athletics of some kind…borderline obnoxious cheers!… AND NOW, completion of a puzzle without angry tossing of the pieces!… And the crowd goes wild!

Insert screaming noise here.

WHAT THE HELL IS WRONG WITH YOU GUYS? (I’m talking to my brain cells here–not you, dear readers!) Ahem. I mean, hey you smart little guys up in my head. I’m concerned about you! Are you feeling okay? Gosh, I wish there was something I could do to help you. Maybe I should eat more salmon… or go for a run. Would you like that?

I am literally and figuratively losing it. Here’s the deal: I typically spend a solid half hour a day, at least, looking for my keys, phone, wallet, Stella’s sippy cup that I just filled, her Godforsaken “paci-binky” and/or sunglasses that I just put down. It’s inevitable. Thirty minutes is absolutely not an exaggeration. It’s a minimum.

Lately, I’ve been getting worse. My rage level is rising with each desperate, irate scouring of the house for items that are often right in front of my face. Things that were in my hands not two mintues before. Sometimes, I start to hyperventilate just a bit. I always want to cry, but I can’t, because I’m too pissed off.

A rage tsunami is forming. But I’ll be glad when it hits, because the wave of anger will surely wash all of our belongings into the street. They’ll be spread out and easier to find.

This is out of control!