Thursday, April 1, 2010

I Can't Believe He Ate the Whoooole Thing.

Max wanted an apple for his after-school snack today.

He's requested apples many times before, but he doesn't usually eat them. (I think it's because of his wonky front tooth. Eating them hurts.) It was also a novel request because 9 times out of 10 he asks for crackers or popcorn the moment he steps off the bus. But today it was if a whole new snack idea had occurred to him. He entered the kitchen and only had eyes for the apples. I got out a knife to cut one into slices, which is what I usually do to make a giant apple more approachable, but he did NOT want me to cut it. He simply took it, sat down at the table, and started eating.

He sat. And he sat.

He ate. And he ate.

If investigators on CSI: Kitchen were trying to determine who was eating this apple, those bite marks would leave no doubt!

He didn't look around. He didn't squirm. He didn't run off. He just sat and ate, with a singular focus.
(Note to self: consider new bowls.)
And he ate.

And he ate.

I tried to convince him he was done with it, that he had eaten all the good fruity parts, but he ignored me.

Finally, he said "Done!"

This is what was left.

*6/3/10 Edited to add: Two months later, and he's turned down every apple offer since. It's a mystery.

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Tuesday, March 30, 2010


Independence seems to be the theme this year. Max has made so much progress lately. He has settled. Matured. He's suddenly doing some really exciting things all by himself!

And the flip side of that is that I am becoming more independent, too. We are tied together in so many ways, for so many pieces of daily life. There is a sense of freedom when I am no longer required for something. And I know that's a feeling that goes both ways.

Sometimes his new independence creates more work or mess or worry for me. That's a truth for any child, but perhaps more literally so with Max.

For example, the other day he entered the kitchen where my husband was making dinner and asked for "Help, please." He's been doing this thing with his videos where he wants help to change them or start them or rewind them or adjust the volume -- all things he knows how to do on his own, barring some complication -- because he simply wants the interaction. And every now and then there IS a complication, in which case he really does need help. But it's usually not clear until we go with him and assess the situation. After the bazillionth time, it is something we are reluctant to do. So, when he entered the kitchen with a request for help, my husband assumed it was yet another false video alarm. He refused to go, and sent him off with the encouraging words, "You know how to do it! You can do it yourself!" Max paused, but agreed, and took off down the hall. We found him in his room, gamely attempting to change his own messy pull-up. Ugh.

But mostly the changes have been good.

We finally had a spell of warm weather recently, and the snow melted off the pavement, making our street and sidewalk visible for the first time in months. I desperately needed to get outside and feel the sunshine on my face, and decided to do just that. Without Max. He's been sick, didn't want to go, was happily watching a movie just inside the front windows. He is clearly visible from outside. Our loop is a scant 1/3 mile, with a good portion of it in view of our house & yard. There is no traffic. Our neighbor was outside in his front yard. Max's brother was riding his bike in laps around the loop. I decided it could work. And by all my explaining here, it's probably clear that a) I don't want you to feel the need to call CPS or criticize me, and b) even though there are many reasons it sounded like a workable idea, it wasn't.

I noticed on the 2nd lap that I couldn't see him in the window, and there was no response to my maniacal waving. So I went inside the house to check on him. When he heard me enter the house, he came skittering down the hall from the bathroom, with a guilty look on his face. He was shaking his head no, and hiding his hand behind his back. I assumed the worst in a toilet-y sort of way, but the bathroom seemed fine. Then I noticed the fingernail clippers on the counter. And that is NEVER a good sign.

Sure enough, I asked him what he had been doing and made him show me his hand...

...and THIS! This is what he had been doing -- trying to trim his own nails!

Independence is a tricky thing. It's long overdue, yet way too soon. It's two steps forward, one step back. It's trial and error. It's mess and discomfort.

But I'm trying to remind myself that it's positive. And beautiful. And necessary. For BOTH of us.
Just as long as it doesn't involve clippers.
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Sunday, March 28, 2010

Sleeping Update

Sleep Update, Month 4.

1. The new sleeping arrangement continues!

2. Even through a bit of sickness! (It was just a cold, but that is an incredibly encouraging sign. He did wake during the night and needed some help & comfort, but he went back to his own bed each time. That's huge.)

3. Not only is Max sleeping through the night in his own room, but he's also falling asleep by himself, in bed, ALONE! (That one fact might be an even bigger accomplishment than the location, frankly. There have been times when he slept in his own room, or slept through the night in our bed, but there has NEVER been a time when he fell asleep alone.)

4. And if that didn't impress you enough, here's one that will make you fall right off your computer chair -- Max wanted to read in bed and turn off his own light! (It was a passing phase, but must be noted because of the incredible Wow Factor.) He tried it for a few nights, and though we left his room with crazy grins (and a hefty portion of doubt), he actually did it. He looked at his books, then turned off his own lamp, and then went to sleep. That's some beautiful independence, there. (And imitation at its best!)


To truly appreciate how far we've come, I had to revisit some posts from the past. Follow the links to see both the illustrated version and the wordy version of our sleep struggle from ONE year ago, and this little story from TWO years ago.

Thursday, March 18, 2010

Shattered by Socks.

This morning was not easy. It's a regular school day, so we were just going through the regular school day routine. It should have been simple, a choreographed 45-minute routine.

Except my husband is out of town. And that changes everything, in Max's mind.

Or maybe that wasn't it at all. I don't know. (Which is precisely the point.)

Max started to cry in the shower. He didn't want to be alone, he didn't want to get in, he didn't want to get out, he didn't want to be wet, he didn't want to be dried. But he was calm again after being wrapped in a towel and got dressed quietly and willingly. I thought he was fine.

And then we got to the socks. I had grabbed a pair of socks from the very end of the supply, and had one sock on his foot when he suddenly realized that it was a pair he did NOT want to wear. Most of his socks are solid white, soft and stretchy, all an identical Max-approved brand. But there are a few random pairs that appear when the laundry is backed up and choice is limited.

Max did not want to wear those socks. They didn't feel right. They didn't look right. They were simply not going to go on his feet today. So I went in search of a new, acceptable pair. I offered two other choices -- tube socks or footies -- knowing he typically disliked both, but they were all that was left. (And some days he's fine with them!) But not today. Today he got upset and flatly refused to cooperate any more. With anything.

I dug through the laundry basket and found yesterday's pair of dirty socks -- the last of the preferred kind -- and tried to put those on him. But he was done. The window of opportunity had already slammed shut.

He cried, he gagged and puked, he scratched his face, and hit his head against the wall. He kept his bare feet far away from me, scrambling sideways like a crab, refusing to calm down or listen to reason.

I kept telling him the bus was coming and he needed to let me put his socks and shoes on. I pointed out that the socks were his favorites. I gave him some time, hoping it would let him push his own re-set button. When that didn't work, I pleaded, I begged, I scolded, I threatened, I reasoned, I promised, I yelled, I wrestled, I pulled & I tugged.

Then I slumped down, defeated & frustrated, buried my face in my hands, and cried.

Max saw this and staggered over to me, his face crumpled and his arms out for a hug. He crawled onto my lap, wrapped his arms around me, and buried his face.

We comforted each other for a moment, and then put those socks and shoes on.

Generally speaking, once the situation is resolved, Max is over it. He forgives, he forgets, he doesn't hold a grudge, he regains control, and he moves on. But the rest of us can't. We're shaken. We're upset. We're bothered, frustrated, sad, resentful, worried.

And today was no different. Max's tears ended, but my older son's started. He waited for his own bus with tears dripping silently down his cheeks. And so my own eyes fill yet again. I tried to talk it through with him, but I'm at a loss myself. I don't understand why it happened. I don't know when it will happen again. I don't know how to prevent it from happening. (We can avoid those socks, obviously, but the reality is that it will be about something else next time.)

Max got on the bus and left for school. He's ready, he knows what to do, and everything makes sense.

But for those of us left in the wake of the storm, nothing makes sense. We don't know what to do. We aren't ready for the day.

I'm throwing away those socks and doing a load of laundry. But beyond that, I'm at a loss...

Saturday, March 13, 2010

Come Closer!

I have a secret to tell you. Well, it's not really a secret...but it's one of those things that I'm scared to say out loud. But I'm bursting at the seams and I need to tell someone! So lean in close and I'll whisper it in your ear....



(There are not enough exclamation points in the world.)

Truth be told, he's been doing it for several weeks now. So it should "stick" -- right?? But we continue to tip-toe around in the evenings and keep our fingers crossed that he does not regress for any reason. I think that if I let him crawl in bed with me ONE SINGLE TIME, or if he comes down with the flu, or if a butterfly spreads its wings in China, all that progress could vanish instantly. (But even then, I would know that we've made it here once before and we can do it again!)

It took 3 months to get here. (That is, 3 months in addition to the 8 1/2 years of previous work!) For 3 months, we faithfully recorded everything and worked towards this goal with a singular focus. We did not give in. We did not back down. We got creative. We changed some things. We added some things. AND IT WORKED.

I have to add -- a small part of me wonders how much earlier this could have worked, and how many nights of frustration we could have avoided. I don't know. Maybe a year? I seriously don't think it could have happened much earlier than that. And it doesn't even matter now. But I do know this: the time was right and it went smoothly because HE was ready.

There are things we did to help him be ready, but the bottom line is that his changes were more important than ours.

This is big, people. HUGE! (So DON'T EVEN THINK ABOUT IT!!) *tossing salt over shoulder*

Friday, February 12, 2010

Valentine's Day

I baked giant heart-shaped cookies for Max's teachers and bus drivers while he worked on the Valentines for his classmates. He helped mix the food coloring into the icing and chose the sprinkles, but then moved on to his own project.

I bought supplies for him to make his own Valentines this year: red paper, a variety of heart-shaped stickers, and treat bags to fill with candy. He spent a long time applying stickers and signing his name over and over.

Even though the big kids said they were too old to exchange Valentines anymore, they ended up drawn to the table of supplies and had fun helping him out. All that love stuff may be embarrassing for kids of a certain age, but we ALL enjoy Max's whole-hearted embrace of it. This is a holiday right down Max's alley. He simply LOVES to love. (Plus? Candy! Gifts! A PARTY! It's pure fun.)

Ta-Da! The finished products are ready to deliver. (And Max is ready for bed.)

Happy Valentine's Day!

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Wednesday, February 10, 2010


I have been putting off this particular post far too long. Those of you who know me in real life already know the heart-breaking story I need to tell, but if you happen to follow my blog without that real-life connection, you have been left waiting.

How I wish I had a happy ending for you. But I don't.

Every time I sit down to type it, I am paralyzed by the enormity of the situation. How can the beauty of a child's life be captured in a blog post? How can grief be expressed in html code and jpegs? It can't, of course. It's absurd.

But here's the thing: the internet is what brought us together in the first place. Though Rachel and I never met face-to-face, my life was greatly impacted by that intangible connection I felt to her and to her mom. Our relationship wasn't just meaningless type floating back and forth through modems and cables. It was real. It was significant.


When my son was diagnosed with microcephaly, I turned to the internet. That is where I found the most information and the most support; it was where the true experts were -- other parents. An entire community is gathered here, full of information, stories, pictures, acceptance, help, encouragement, humor, wisdom, support. In the hundreds of online voices, certain ones began to stick out to me. They were the ones that I could identify with most closely -- whether from shared experience, compatible perspectives, similar frustrations, parallel goals, or even sanity-saving humor. I found this common ground with Rachel's mom.

Our two kids had many similarities. They were both physically active, spirited, independent, challenging, charming, loving little rascals that had continued to surprise the experts and shatter predictions. We commiserated over the never-ending messes and frustration of challenging behaviors, and cheered together over milestones met & skills achieved. We laughed about the humorous moments, and warmed at the gentle ones.

Rachel was several years older than Max, so in many ways I viewed her as his role model. None of the textbooks or doctors or specialists could predict Max's future, but I saw a new potential path by looking at Rachel. In her, I caught glimpses of what he might look like in 2-3 years' time. Her astounding success with her talker, with letters and spelling, with problem-solving, with cleverness & humor -- it all helped me to believe that every bit of it was possible. That we needed to keep trying, keep working, keep believing the best, keep expecting more.

And Rachel's mom inspired me, too. She made me feel less alone on this journey. She "got" me. She could hear my deepest fears and darkest thoughts, yet always managed to revel in the mystery, and consistently remained her daughter's number one fan. She reminded me to embrace the magic.


The other reason this post is so hard to type is because it's really not my story to share. I feel like I am trespassing on sacred ground.

I am hesitant, knowing that Rachel's story is far deeper than I can post here, and far larger than the small points of overlap with mine. I write this out of a desire to proclaim her bright, shining existence and unforgettable spark. I write this to acknowledge the impact she had on me. I write this to remember.

Rachel left this world just as she once entered it -- with her parents by her side, in a hospital room filled with boundless, endless love.

Her funeral was heart-breaking and beautiful, filled with moments of laughter and rivers of tears, abundant love and wrenching grief. I carried away with me a sense of comfort that is created when shattered hearts are bonded together with the glue of community, soothed with the balm of shared love and the gentle wrappings of memory. I also carried away with me a continuing ache for her family members, who are now forced to redefine themselves, to find a way to carry on, to thrive even in the face of overwhelming grief. A piece of my heart remains with them still, as I long to ease their pain.

There is a large Rachel-sized hole in the world. She leaves behind two younger brothers, her devoted parents, and numerous friends and relatives, neighbors and classmates, teachers and students, doctors and therapists, supporters and admirers -- young and old, near and far, past and present. The number of people whose lives have been touched by this one amazing girl, and forever changed as a result, is inspiring. She brought seemingly disparate lives together. She made all of us become better people. She created an amazing community, for herself and for us, and her memory lives on in our hearts.