I cried when he turned one and I knew heart surgery was on the horizon. I cried when he turned five and we were fighting with the public schools. When he turned 11, and…Why did I cry when he turned 11?
I sat next to my dad and said, “My birthdays don’t bother me. His make me a wreck.”
“That’s because you’re getting old.” My father suggested with his normal tact and compassion.
No, that wasn’t it. It was the unknown. With each year we were one year closer to the great unknown: Adulthood.
Earlier this week the website TheMighty.com posted a reprint of my blog, “What are you going to do when he grows up.” It struck a chord with many readers.
It’s not healthy how we obsess over the future with our children who are differently abled. When a “normal” or “typical” child is starting kindergarten, do we obsess over how she will find a job? Not usually, no. Yet from the moment my son was born, I was constantly prodded about his future and what was I going to do about it.
What I wished I had done was less crying on birthdays.
Before Marcus was 21, but adulthood barreling down upon us, I was out with some girlfriends and the subject of our kids came up. One mother of a young adult beamed with delight – “It just gets better every year!” she said. I envied her. I thought, when does my “It gets better” happen?
Then it did.
It could be because once Marcus reached “adult” I felt like we had beat the odds. Remember, when he was born I was told he wouldn’t live past 30. For him, each medical situation proved to be a bump, not a roadblock, and even now we strive to become healthier every day. The fact that we can enjoy what we enjoy together more: Theater, concerts, karaoke. That is fun. I think even that Quinn and Marcus can enjoy a good (or bad) “Alien” movie together actually fits into the puzzle.
Is Marcus fully accomplished, so to speak, in his adult life right now? No. But, Quinn and I are still trying to get where we want to be. So I guess the idea that when your child becomes and adult and BAM everything for life is supposed to be set up – well it doesn’t apply to any of the Grown Ups in our household.
**I’m breaking in here to mention this is a re-post. This blog originally went up in 2014, Marcus was about to turn 24…Before his book, before his speaking at the UN, before, before, before and this next weekend he will turn 30. Wow. 30.”
And for the record, worrying and preparing are not the same thing. If I did as much preparing as I did worrying, maybe I’d have the state, red-tape, and vocational training wrapped around my finger. Maybe. What a bunch of wasted energy.
You know what I’ve realized this week, it’s so obvious I’m ashamed to mention it.
All of the time I worried about Marcus and adulthood, I looked at what other families could, would, had to do and I forgot. I literally forgot that it would be as it always has been: Him.
It’s like I imagined this stranger would come into my life and say, “Here I am.”
“Who are you?” I’d ask.
“Well, I’m the adult Marcus.” He’d say.
And my Marcus, my boy, would be lost and far away. That, friend, is what I really feared. It’s like…I thought that I’d be facing this adult Marcus life all alone. Like I forgot that Marcus would be with me for it all.
Here he is, a growing spirit beside me every day. A sense of humor I rely on. A willingness to try new things with me. A thirst for music and theater and being a part of it all. A creative spirit that Won’t. Shut. Up. All of this that is and always has been Marcus.
You know, the day he was born and I held him in my arms, my heart was so full of a new and unrecognized love, it literally hurt. And it only grows. Oh geesh – now I’m crying again.
Everybody’s story is different friends, and this is mine today; I’m so thankful tomorrow, Marcus is having another birthday.
As my Boo says, HAPPY DAY to your Marcus. I totally get the tears, though. Mine are usually brought on not by the birthday but by the crap that goes with them. The parties and the presents. Heck Christmas completely does me in. Because well meaning family members get gifts that are totally inappropriate then sit around and remind me daily of what Boo doesn’t do instead of what she can.
Ah yes, even our families don’t always have a clue. (current family readers excepted I’m sure.)
Holidays/Families are hard. I’m just starting to try to put my head around the fact that they, too, are trying to cope and let’s face it, without the special person in their life *every day* like ours, it’s harder to understand. Ah, but that’s a whole ‘nother post you and I can tackle on another day. (Also, thank you for commenting – I love your blog!)
I’m so grateful for you sharing your insights. My son is not quite two yet and I am frequently distracted by the future unknwn. Reading this reminds me that I just need to live in the present with him and enjoy him and this part of our journey! Thank you!
Thank you for your comment Julie – That is why I share this.
Best wishes and enjoy!
Stop making, uh…you…cry.
Yep. You. Not me.
I love the points you bring up in this one, comparing to other families (who don’t usually worry about their kid being able to get a job until they’re older) and just the basic non-point of worry.
I’m so lucky that I get to sit on the side and just enjoy without the worry (for the most part).
Now you’ve gone and made me cry!!!
Maybe when he was born, I was too young and dumb to know all the hurdles he’d have to overcome. I just knew he was (and is) perfect and I loved him and I knew he would grow up to be an awesome man.
And it’s all true. Happy Birthday, Marcus!!!
The grown up Marcus is enjoying science fiction movies and Mystery Science Theater 3000- awesome!
Living in the moment is hard. I have to remind myself often to appreciate and be grateful for today, and not obsess about tomorrow.
Isn’t it funny how we, as parents, worry about so much? While I don’t have nearly the amount of experience you do, Mardra, I’ve still listened to some awful things that have been said about my son. From friends telling me he’s like taking care of ten kids, or that he’s odd (of course he is, he’s MY kid), to teachers telling me he can’t pay attention or eluding to the fact that they think he might be autistic (yes, I used to work in a mental hospital, I know what you’re hinting at). But in the end, he’s my little boy. And whether there is something “off” about him or not, he’s still my little boy, and I love him! Sorry, end of rant! 🙂 Happy Birthday, Marcus!
Yes Kristi – I see many parents spend time worrying instead of enjoying.
ANd yes! He is your boy and when you have each other – #1 right? Right!
BEEEE-utiful! My favorite line is: A sense of humor I rely on. Oh, that is so true for me too – I’m just starting to realize how Josh makes me laugh every day, no matter what.
This post also makes me think that somewhere, in the dark, hidden, recesses of my pessimistic mind, I still fear that Josh won’t be here long enough. That the time I have with him will be too short. So his birthdays are also bittersweet for me. Not to mention that he thinks he will magically get married when he turns 30…. long story that boils down to me telling him that he couldn’t get married until he was 30 – when he was maybe 5 at the time – and it stuck…..
Yes – I hear you on that. I belive that (early death) was a big fear that covered me from his birth on. Now I’m deteremined that we will be healthier each year and make our mark for as long as we can. I think determination has begun to over-power fear. It won’t forever, of course, but for us for now I’m pleased with the swap.
Love this post! I worry all the time about road blocks and hope I realize that they are just bumps too!
Wow, the words of yours wondering if parents of typical children wonder what their children will do for work when they’re grown when they’re entering kindergarten – yes. That’s me. I’m so hopeful, and so terrified. My son is undiagnosed, but likely is ASD, with a severe speech and language delay, and well, some other stuff. I love his birthday. I cry on it each year. Not because I’m sad, although I guess part of me – anyway, this was a beautiful post and I’m so so glad I found your blog from the special needs parenting facebook group.
Thanks for the kind note Kristi.
Boy, can I and my parents relate. I was born premature and have multiple disabilities. My parents worried about my future fromt eh moment I was born – or at least, from the moment they knew I’d survive the neonatal intensive care unit. What this did was instill a deep fear of the future in me. I knew at age nine that it would be “only” nine years before I’dhave to leave the home, nd I knew all about going to university and stuff. My 28th birthday was on Friday and I have probably disappointe dmy parents in many ways, because osme of my disabilities (eg. autism) werent’diagnosed till adulthood, and I truly wasn’t prepared for adult life when I left the home at 19. I’m now not living independently and dropped out of uni two months into it, so yeah. Well I don’t know hwat my point is.
Thank you for your comment. On the one hand I have to say that I too, as a typical child, was told for as long as I can remember – “You move out at 18” on the other hand, it did not instill fear in me like you refrence here, and I can see why. I appreciate your blogged reply as well. Important to share to other parents your message.
I love the last part of this especially. I think that’s exactly the reason why I am afraid of the future…this unknown “stranger” adult version of my child. You put it perfectly. He will continue to be who he is all along. I just love that. Thanks!
“You know, the day he was born and I held him in my arms, my heart was so full of a new and unrecognized love, it literally hurt. And it only grows. Oh geesh – now I’m …”
That line is yet another that you have stolen from my head, specifically while I sat rocking my guy in the NICU almost 26 years ago.
No, YOU’re crying.
Much love to you all.