Wednesday, February 10, 2010

Max plays alone (and that's an amazing thing)

A lot of people would have no clue why this video is a big deal. It's just a cute little boy playing with a car and a ramp. But to me, it's miraculous.

When Max was younger, he couldn't play by himself. He was incapable of picking up toys because his hands were tight, he didn't have the attention span, and he usually wasn't interested. So I played with him—and for him—as much as I could, never feeling it was completely enjoyable because, damn, I wanted him to DO things. I wanted him to LEARN. I wanted him to PROGRESS. I wanted him to OVERCOME his delays. I wanted, I wanted, I wanted.

When I'd go to friends' homes for playdates, I'd get distracted from our conversation by the sight of their kids grasping toys, pressing buttons, picking up things big and small. How miraculous their little hands seemed to me. Sometimes, during quiet moments, I'd sit at the dining room table and stare at my own hands. I'd wiggle my fingers, point them up and down, marvel at their intricate movements and the fact that I had two hands that worked fine and I'd never once thought to appreciate them.

I hadn't realized, until I watched Max at play today, just how anxiety-ridden playtime was for me back then. Yet as I stood in the doorway, another layer of grief peeled away and I felt only relief.

The progress has come slowly over the years, but at moments like this it all adds up to something tremendous. There it is, right in front of my eyes, in a little red car swooshing down a purple plastic ramp.


  1. Too Cool! I get it. The thing about CP is it is so different depending on the degree.

    Seeing Max "W" sit, brings back memories of me as a child. I can't do that anymore as an adult, but I know many who can.

    People often take so much for granted. I'm not sure if you are one of my followers (I don't think you are {:(, but I could be wrong), or if you saw what I wrote, but I just wrote (more like ranted) about CP & being in a powerchair in the entry on 2.4.2010called Fun.

    This is not the norm for me. I rarely see my disablity as a bad thing & it rarely gets to me. I'm always trying to be positive about it & the littlest things are huge. Like when I got an automatic door opener.

    As crazy as it may sound - and I know you'll get what I'm saying - you are the lucky one for being Max's mom. Why? Bc you get to find the greatest joy in the simplest of things. Never taking anything for granted.

    Always Blessed,

  2. I keep thinking about your trip to Duke. Could it be that the stem cells have kickstarted or amplified Max's progress? Or has his improvement been on a steady continuum?

    Love the purple slide! That's a solo play motivator if there ever was one.

  3. Yay, Max!

    I know how you feel - the grief associated with watching other kids.

    I, too, recognize that W sit. Sigh.

    I'd love to hear more about the stem-cell transplant, and how much of Max's recent progress (which seems like a lot!) the doctors attribute to that?

  4. Go Max!

    I love his contempt while he plays- reminds me of the innocence of childhood. You have a great guy there!

  5. GO Max, GO Max, Go Max! SO happy for him, Ellen! That is great video and he is being so patient.

  6. That is awesome! I totally get what you mean...I was so happy when Kennedy started playing more on her own...or even more when her teachers would tell me joined in withthe other kids playing instead of just watching them.

  7. I play for my child too, we taught him how to play with his garage and now he pushes the cars around it and I make the 'vroom vroom' sound. Like you, I had to play FOR him so now I love being an accessory rather than the main event!! Well done Max:) Jen.

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  9. I totally get it. Miraculous indeed!

  10. Emma and I watched the video--Emma asked to see it and wanted to know all about Max. She says she hopes he only gets better and better. Me also:) Thank you for all you share--

  11. So great to see Max playing solo! I get it. :) I'm also so amazed by hands. I'm starting to finally be able to look at a baby playing and not be filled with overwhelming sadness for what Elijah has lost, but rather amazement at what a miracle it is that any of are able to move our hands (or at all!). It's really incredible when you think about it.

  12. MAybe day...will play too. Oh, her fingers know the motions ~ she's just stubborn and wants to be entertained 24 hours a day. She does have the "cute" thing on her side.....

    Ugh., here's the deal. I'm talking Katy into BlogHer. Can we stalk you around NY for a few days? Even if you say no, we're coming anyway.

  13. Ellen, that is very, very cool! :)

  14. GO MAX!!! :) I so get it. Jailen is just beginning to play by himself somewhat. He still needs alot of assistance, but he's definitely making progress. Just the other day I told my Dad (crying of course)that before Jailen came around I would've never felt so much emotion watching a 4yr old point with just one finger. These children definitely put it all into perspective for us.

    I'd love to know more about the Stem Cells. We've done HBOT, but I haven't heard too much about the Stem Cells. Please share!

  15. Way to go, Max! I'm wondering if he picked that toy because it has a purple ramp :-)

  16. Thank you for always reminding me that progress although slow can/will happen. You & Max are inspiring.

  17. "Life is not measured by the number of breaths we take, but by the moments that take our breath away." Unknown

    Superhero Max will always astound all who know of him or hear/read of him from his Superhero mom!

    As parents, we don't get to choose when or how our gifts (our children) will amaze us... so we patiently wait for our turn to stand in awe and give thanks...

    Yes, you should be so proud of Superhero Max (of course) but also you should be proud of yourself... for waiting (as long as it took… while standing patiently watching others proceed) for just the right (surprising yet so basic) moment to take your breath away & then taking time to inhale that moment (& all its gifts)it into your heart.

    Go Superhero Purple Max!!! Go Superhero Purple Max's beautiful mom!!!

    Breathe... inhale... give thanks...breathe again ;)

  18. Can I tell you how this post made tears spring to my eyes.

    Not a single miracle of God's is wasted on you, Ellen.

    I've heard it said that a whispered "Thank You" is the sweetest prayer to God's ears.

    He heard your Thank You, Ellen, and I think how your sincere marveling in this miracle humbles us all.


  19. I got you. I felt you. I am still waiting for Emma to do more things like this. It is truly amazing to me, for sure. I very much enjoyed watching Max. Emma still needs a lot of help to really play well. Thanks for sharing. Go Max.

  20. Go Max! This video and post brought a tear to my eye. I wish Emily could play by herself like that. Thanks for the reminder that it will her own time Emily will do it.

  21. To those of you with young kids, please, take heart: It WILL come. It took a while for Max, but I posted this to let you know that it'll happen. It's just so hard to imagine when you're in the thick of it that life won't always be that way...

    Jara, Max got a stem cell therapy infusion in August, here's one post we did on it with some info:

    And for everyone who's wondering how much good the stem cell therapy did Max: It is impossible to know. The doctors would not be able to know, either.... The doctor who did the transplant said the one time they were able to verify that stem cells had reached a child's brain was when they did an autopsy on a girl who had ended up dying for a different reason (gruesome, I know). I think that I have definitely seen Max progress since getting the stem cell therapy—not in any gigantic way, but in the fact that he's trying to talk more, trying to use both hands more, and more seemingly alert. But again, hard to know if it's the stem cells or natural development. Whatever it is, I'LL TAKE IT!

    Megan, COME to Blogher with Katy! Please! Everyone who can, come! It would be awesome to meet a bunch of you in person, we can have our own little par-tay.

    OK, back to our snow day.

  22. I am misty-eyed. What a great video. Not only was her "playing" but you can see he is "pretending" too.
    Great fun Max.

  23. I'm not sure if you check reeces rainbow? ( if you don't you should. There was a new bunch of older "other angels" listed including one named Max..who kind've looks like your max and who has cp like your Max...:) (go look!) now doesn't he make you smile? Natalia has my heart too.

  24. I soooooooo get it! My daughter plays and plays with her unifix cubes (my smart, sweet SIL thought of them as a gift for her for Christmas this year)!!! I LOVE IT when we discover something to keep her busy by herself!!
    I was thrilled to discover your blog!! We moms of "special kids" sure do need each other!

  25. I got teary watching the video. How precious! I have found myself becoming more and more amazed at how fearfully and wonderfully God has made us. And how much our minds and bodies can do that we take for granted. Its nice to be reminded how awesome each of us really is.


Thanks for sharing!

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