Tuesday, October 13, 2009

Yet another "aha!" moment about raising a kid with disabilities

Riding the train home from work tonight, I bumped into a woman I know from my city. Her twins were born the same year Max was. I asked how they were doing.

"They're in first grade—it's so hard to believe!" she said.

It hit me then: This would have been Max's first year in elementary school, too. Incredibly enough, that hadn't even occurred to me when September rolled around. I was just excited for Max to go back to the school for kids with special needs that he's in, one that doesn't have grades, per se.

I didn't think "If Max hadn't had that stroke, he would have been in first grade now."

I did not compare him to typically-developing kids.

I did not mourn.

I just took Max's life as it is. And that's a momentous thing.

My mind long ago accepted that I have a child with special needs; I got Max into our state's Early Intervention program when he was a month old, and I've been paving the way for him ever since. It's taken my heart a much longer time to accept those special needs and to cherish Max for the child he is, not the child he could have been. But it's happening. It's really, really happening.


  1. And Max's life is great as it is.

    He's very lucky that he gets to be with kids of all ages and abilities.

  2. Ellen, those moments can be a bit painful for me, still. It's good that you are that way. It would have been Faith's first yr, too. We have friend whose son is 5 months younger than Faith and this was his first yr. It's kind of hard for me to talk about it sometimes. I do accept Faith for who she is but those moments still smart.

  3. I needed to hear that this morning. My heart still hasn't caught up, and, with the mounting decisions about moving, it's always on my mind - this is simply not as easy for us as it might be for another family.

    I'm so glad to know that there will come a day where I forget and just live in the today.

  4. I am happy for you in your way of Max's life. But I think I am still in that inbetween stage. I do accept Daniel for who he is, but it still "smarts"as Candace said. I still get a little lump in my throat when others talk about their children who are the same age. But then again, I just love where Daniel is in his life...he is happy and he is loving life, so as should I! :)

  5. Live in the moment and love the moment.

    Like I always say, having a "normal" kid is no guarantee that your little darling is going to grow up and go to an Ivy League school, get "the right" job after graduation, marry "the right" person, live in "the right" neighborhood, have "the right" number of children, etc., etc.

    The smartest, most neurotypically perfect and athletic little fart can one day decide he wants to reject materialism and modern life, get EVERYTHING pierced, play bongos nekkid on an ashram, and make home-made sandals to support himself when he's not running around in a bedsheet with a begging bowl pestering people in airports. And what can you do about that? Not much if the kid's of legal age with a mind that is made up.

    I always say that "your" (generically speaking) hopes and dreams for your children are just that--YOUR hopes and dreams. Not theirs. There's a balancing act between guiding them to good choices and forcing them to do stuff they just flat-out don't want to do or trying to brainwash them (the "In My Image" effect). It's something I watch out for--kids have enough stress without being turned into Little People Pleasers who are engaging in activities that they freaking HATE simply to please adults and meet their expectations.

    The real awareness (and the real FREEDOM to live and enjoy your life exactly as you find it) is when you realize that your kids have THEIR OWN hopes and dreams (developmentally or physically delayed does not mean comatose or lacking in the gifts of delight and anticipation), and they may not include going out for the school baseball or football team, playing the flute like mom or dad did, going to the prom, or even a mainstream education--never mind reaching the milestones that we desire for them. That doesn't mean we shouldn't try to give them options, guidance and encouragement, but we just have to retain that intuitive sense to say "Enough! This child is not genuinely ENJOYING this!"

    Live in that moment! Love that moment! Your kids are YOUR PRECIOUS KIDS--they most certainly shouldn't and can't be "compared" to any others, because they're uniquely yours! That's how I see it, anyway. I also don't worry about (or envy) how the neighbor's kids are doing--who really knows what goes on behind closed doors? Little Johnny Next Door might be starting third grade ahead of his peers/going out for basketball/getting all A's/Oh How Wonderful....and coming home to a drunken pa who knocks ma around the room when loaded up with a snootful (or vice versa). Or worse...

    Ya never know...!

    Again, I never can say things in just a few sentences, it seems...

  6. Wow. I love this post. You're so awesome!

  7. I was just thinking about this very same thing this morning - about how lucky we were to able to mourn the son we had imagined we would have before he was actually born (Emmett's brain damage from his arachnoid cyst was spotted in an early ultrasound). So essentially, we *chose* to become the parents of a special needs child and had time to come to terms with it. I'm not saying the process was [is] easy, but certainly it's been easier on us than being blind-sided by the whole thing (like you, your husband and so many other parents were). I hope this makes sense.

    I'm glad that it's hurting less for you.

  8. Ellen, you give hope to those of us that aren't quite there yet.

    Although it's gotten easier, moments like the one you wrote about are still really difficult for me - so much so that I actually avoid conversations that just....might....come ever so slightly close to touching on such a sensitive subject! (Once I burst out with, "Was that thunder??!" just to head off another mom about to suck me into one of those conversations!)

    Glad to hear it might come to an end one day.

  9. Hi -- I think those painful moments re milestones ebb and flow.

    Sometimes we're in a place where they don't touch us -- like Ellen was -- but other times they do. I used to think that at some point I would have fully "accepted" my son and I would never have those feelings again.

    But I've found it's a lifelong process.

    My son is 15 now, and when my niece was home from university on the weekend and visited, I couldn't help feeling sad that Ben wouldn't have that experience of going off to residence. Or when one of his siblings says: "Will Ben learn to drive next year?" and I have to explain why that won't be possible.


  10. Felicia I love your comments. You made me feel better today about something!

  11. I have to agree, Felicia is always incredibly reassuring. And wise! I need to make something clear, I did not mean to imply I am completely beyond painful moments. But at least they are getting fewer and farther between. I hope that continues. I realize, as Louise says, it's a lifelong process.

  12. Great post Ellen and so great to have one of those moments when our normal is normal! I have not forgotten about making a couple of bandana bibs for Max either..xoxo Bron

  13. Great post. I honestly think these "special needs" our children help us to focus a bit more on the person within our children and not do so much projecting.

  14. Oh man. As the mother of twins you saw on the train, I was immediately racked with guilt that my off-hand comment resulted in a blog post!! How could I have been so insensitive. But then I read the whole post and (through my tears) I realized that there was no guilt necessary. Your post was marvelous and remarkable and I'm in awe of your ability to accept the circumstances as they are and embrace them. It's an important lesson for everyone to hear!

    PS. people so need to vote for you, your blog rocks.....

  15. I don't compare myself to the flutist that played for 5+ years.

    I don't compare myself to that "perfect" student.

    I don't compare myself to the fastest runner.

    I'm me and that's all that matters.


Thanks for sharing!

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