Tuesday, February 3, 2015

Past, future, present

Can I have your daughter for the rest of my life?
Say yes, say yes
'Cause I need to know

The song came on the radio as I drove to Max's school the other afternoon to pick him; he had an appointment with a cerebral palsy specialist. I was a bit nervous—you never know how those big-deal doctor visits will go. Plus (major plus), this doc is at the hospital where Max was born. Over the years, I've considered going back to exorcise the grief demons, but have never made it there.

Back to the song, which is about a guy asking a father for his daughter's hand in marriage. I'm pretty familiar with the lyrics, particularly the line "Why you gotta be so rude?" Sabrina is fond of singing it to me when I ask her to get off her computer and go to sleep, because I'm obnoxious that way.

The refrain stuck in my head. I wondered whether Max might someday get married. It never does me any good to try to see into his future and sure enough, tears started rolling down my cheeks.

I've had the marriage question on my mind lately, as I'm planning Max's bar mitzvah. Another mom of a kid with disabilities mentioned that she and her husband had gone all out for their son's bar mitzvah because they considered it his wedding celebration, too, the wedding he'd never have. As I've been speaking with potential photographers and DJs, I've come close to saying the same to help impress upon them just how special we want the event to be for Max. But I've refrained. It's too distressing to say, let alone ponder.

The rational part of me that knows full well Max will be happy with whatever the future brings, whether or not that involves a relationship. He is still getting a handle on what the whole marriage thing means. When I ask if he'd like to get married someday, like Mommy and Daddy, Max says, "No, fireman!" (As in, I want to be a fireman.) When I note that firefighters can get married, he says he wants to live only in a firehouse, seemingly ruling out a scene of domestic bliss. The other day, he told me that he'd like me to have another baby, and he wants to name it "Angelo" (after his favorite firefighter). And then, he informed me that he'd like Angelo to be the father. Trying hard not to crack up, I said, "Mommy is already married to Daddy." That gave him pause, but only a little.

We keep it lighthearted. But when it comes to that "Will he or won't he" marriage question, it's hard on my heart. So I drove and cried. I wasn't thinking about particulars, like how the logistics of his relationship would pan out. I was caught up in a nebulous worry vortex. Then Pretty Young Thing by Michael Jackson came on the radio and more tears fell because Michael Jackson is DEAD and worse, I felt OLD since PYT came out when I was a teen.

I pulled up to Max's school, composed myself and went inside. He was at the door to greet me with his wonderful teacher, Linda. We walked over to a display to check out a cool mask Max had made as he went to get his stuff. Then she told me what had happened the other week. When Max gets to school on Monday mornings, Linda likes to ask if he missed her over the weekend and Max always says, "Yes!" Except when she asked the last time, Max said "No!" and laughed. He was teasing her. Linda laughed, Max cackled and the two of us giggled all the way to the car.

As we headed to the doctor's appointment, 40 minutes away, Max and I had a nice chat. We talked about (what else) his March trip to Chicago with Dave. We went through a list of his favorite things (food: mac 'n cheese; sport: bowling; color: red; movie: Planes Fire & Rescue). He pointed out BMWs we passed, his favorite car.

I thought back to the first few years of Max's life when I'd drive him around. Oh, how I ached to hear him babbling in the back seat. I wanted some sign, any sign, that he someday might have speech. I'd talk to him, sing to him, turn around at stop lights and try to coax "Mama" out of him. Once, when he was two years old, I heard a few sounds—what, I don't recall, but I was elated. That was it, though: He never again babbled in the car during his babyhood. It was the loudest silence I'd ever known.

And here we were, having a conversation.

Many times, Max's past, future and present converge on me. Always, it's Max who yanks my mind back from the precipice to the present, his absolutely amazing present.

Image: Flickr/Corey Ann


  1. I totally hear you on this. My stress out thing is wondering how The Boy will walk up the aisle if he's in his wheelchair and his bride is walking. Or how he'll get up the steps at the front of the church. Then I remember that's just details. Truth is, The Boy is exceptionally gifted in relationships, which has nothing to do with his limitations. Max has love to give, and he knows how to receive love. That's where it all starts :-)

    1. This is one of the most meaningful comments I've ever read. Thank you for that perspective.

  2. Max has a sense of humor. That alone will increase one's chances of finding love. I hope to find the right guy, but I'd rather be forever alone if none of them are a fit for me. If he doesn't want to find love, that's fine. In band world, I did chair tests in symphonic band. I moved up a chair (7th to 6th). I started late and knew I would be looked down on for doing so, but it's better late than never. Now, my flute skills rival, sometimes surpass, those of my more experienced peers. Even the little progress, such as playing a passage 10 BPM faster than last time, matters.

  3. I always read posts like this with difficulty. I am middle aged, and have never been married. I do not have a disability. I always assumed I'd get married, but it just hasn't happened. I"m sure it makes my mom a bit sad, but we don't talk about it. Luckily for her, she can brag about my brother and his family. I try and keep a positive outlook on life, take pleasure in my friends and family and my work, and find happiness where I can -- just as Max does. Sometimes that's just the best we can do.

  4. I've been reading your blog for several years and can totally see Max marrying. (Of course, I expected that for myself, too, and it didn't happen. But it's not wrong, just different...) I can envision him laughing with someone, even sharing an interest/obsession, and helping each other out according to their strengths... And who wouldn't want to be that girl? Imagine if his interest in her leads to him sending endless love notes or flowers! I truly think he's got a good shot.

  5. I worry about my future too. My disablity is so(hearing loss) that it wouldnt cause any challenges in getting married but still. Ive always planned of it, but I dont know. As a kid(before I found out my hearing loss wasnt fixable) I could picture me wearing my mom's wedding dress walking down the aisle on my dad's(and possibly my mom's) arm-no hearing aid. That was one of the things that I struggled most w/ knowing I would always have a hearing aid. I worry about the future-but not the present, relationship wise. Im still young.

  6. oh and Im sure Max will have an awesome, fufilling life, married or not.

  7. My godson has CP and did a terrific job at his bar mitzvah -- and I got to say an aliya! His was held on the same day as two other kids (without disabilities) and totally held his own!

    As a person who went to 2-3 wedding-esque bar/bat mitzvahs a weekend, every weekend, for a year and a half (in the late '80s/early '90s), I'd highly recommend not going all out on Max's party -- they all blend into one after the first dozen or so :-)

  8. Who says Max won't get married? I have a Facebook friend who has CP and she's happily married and marriage is not out of the question for me either.

  9. The best piece of advice I ever got from any of my son's "people" was when I asked his SEIT if she thought he would be able to get married someday. He was 2 or so at the time, and she asked me if I would be worrying about that if he was a "normal" kid. I said I wouldn't, at which point she said "so why are you now?"

    She was right...the future will arrive all on its own, and so why drive yourself nuts by worrying about something that would happen (at the earliest) a decade or so from now.

    As for Bar Mitzvahs - we did ours as a glorified birthday party on a Sunday with some family and a bunch of his teachers present. The part in shul (synagouge) on Saturday had junk food and his dad covering a lot of the religious stuff that our son couldn't do.

    We just decided that our version of not keeping up with the Jonses was going to include not driving ourselves nuts with how a Bar Mitzvah "should be". Instead we'd focus on what he could handle or what he needed to happen for his enjoyment and we'd go from there.

    Take care and good luck - Alyssa

  10. You might have to accept that Max's relationships will be limited to family. Not every pot has a lid as my grandmother used to say. You just learn to cook a different meal in the pot that does not have the lid.

  11. I wonder about the future for my son too. If he'll be able to leave home and live on his own, have a girlfriend or boyfriend (not sure on that either???), or marry, procreate...the list goes on and on. I too try to stay in the present and enjoy my time with him now, knowing my time with him may be forever, and that would be fine with me too.


Thanks for sharing!

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