However, for me there is a feeling of having these last few years stolen from me. Having a part of my life that was supposed to be so meaningful, unforgettable, and rare and joyous - raising your babies into children. Watching your body and then your babies grow. Enjoying the first babbles, words, steps, and then proceeding to hilarious toddler comments and wondrous and terrifying feats of physical daring. The pure joy of watching your child unfold and develop.
I know that joy. I get that. I had that. B was always developmentally ahead, bright, alert, huge vocab at a young age, well behaved, adorable - and I was a 'smug parent.' I'd see her so far ahead of kids her own age, or where she was at the same age of other children. And it's funny, just as I would smugly internally congratulate myself, an inner Irish Catholic guilt voice piped in and reminded me to be careful, be appreciative and that the wrong kind of pride can be dangerous.
So as I watched Owen not develop, not be alert, not walk, not talk.....those moments were stolen from me. Those precious joyous moments instead became markers of fear and devastation, as the months ticked by and still....nothing.....and I knew something was wrong even in the first 8 months of his life- he was SO different than Bridget. That's why when SOMEONE finally identified it other than me, I was off searching for answers. I knew. Do you know what it's like to NOT want to fill out your child's baby book? Oh, what to include in it?? Their first 'Early Intervention' note? Neuropysch test? And for some of my friends, first date of ambulance ride or overnight hospital stay? First surgery? All those precious moments become an undefinable terror that you have to live to experience, and all those moments are stolen. Their babyhood, so rare, stolen from us. I've become lost and immersed in the grief and the anger - we therapists call it 'surviving rather than thriving.' You're trying so hard to get through each day you can't be the best 'you'. We therapists call that 'self actualization'. (See, learn while reading this blog too!)
And now, facing the next decade of my life, I feel I know so much more about life and yet so much less about myself at the same time. I've worked hard to improve my life and make it better, search out support, take care of myself, write, take risks - and it's paid off. A contributing writer to Bay State Parent, eating better, my own business, still at my non profit with some unbelievably great clients and staff, became active in a whole other community/world/cult of Fragile X with inspirational people and emerged with new best friends, exercise, my dining club, becoming a member of the DCF advisory board, seeing lots of old friends again and making new ones, maybe even doing a tiny bit of spoken word poetry....
But yet in the middle of all of my attempts to thrive and self actualize it seems I know even less about where I am going and what the next ten years will bring. The difference between my some of my cohorts and myself is that they feel settled. Their kids are growing, getting older, are healthy, their careers moving forward, homes solidified, money in the bank, and they are feeling that they can start to breath a little as thier kids become a little more self sufficient. Enjoying the precious moments of baseball games and parades and beaches and Disney - they are only young once!
These moments will not all be for us. Not sure if and when O will be able to handle some of that (at least, the super noisy and crowded activities). But honestly, that doesn't bother me as much. I'm always going to make sure my kids get to do what they want, regardless of how it happens. If that means B and I go to the parade alone, then that is what will happen. And we'll have a good damn time. And I do believe that with work and help and patience and meds (for who I'm not sure) and insanity, O will be able to go to all those places too. I won't give up. My job has shown me that children can overcome and endure and are much smarter than we give them credit for, and my own kids continue to amaze me daily. I have to believe in my own kids' strengths. And I do. I'm pretty sure they are remarkable kids.
Maybe it's me I don't believe in. Turning 40, sad and grieving some stolen years. Not ready to be a grown up yet. I feel like I still need to find me. Therefore, I dunnnnnnnoo about this 40 thing. Not really feeling it. Not really wanting to feel it.
When you start to watch the decades pile up and are able to use them referentially, that is a problem. Went to my 'twentieth high school reunion' a few years ago! My father has been dead for twenty years this year. Many of my friends I've know since high school and college - BOTH over 20 years ago!
What happened to "Never trust anyone over 30"? The cops don't even look at me suspiciously anymore, yet I still feel guilty when I see them! "I didn't do it officer." Today the bus driver beeped and pointed at us and I was thinking "Oh shit I hope I'm not in trouble!" (It wasn't me. Cam forgot his sweatshirt on the bus yesterday. Whew.)
Between working with kids everyday and seeing high school friends every friggin week, I'm pretty sure nothing has changed! (it's no wonder my favorite population to work with is teenage girls.) I still feel 20, still see the same people I was friends with when I was 20 (and 15...and 5...) still visit the same places. How can I be 40? I've changed by not changing at all....
Mid life crisis? Hell yeah. Big time. Thankfully, there are books on all sorts of topics so I just logged on and ordered some midlife crisis books to be delivered straight to my local library! Love C/W Mars. Turns out, I fell into several different categories, which bizarrely relieved me. I love putting a name to things! What the fuck is wrong in my head, let's look it up and label it! (What - it's my job OK, it makes ME feel better! To my therapist friends, they say an mid life crisis is due to an undiagnosed adjustment disorder. Innnteresting.)
So in 3 days, gulp. I'm just not ready. I'm kinda scared. I don't wannnnnna. The minutes tick by, the days turn to night and to morning again, and soon the day will come and go like every other. Birthdays are overrated days, like New Year's, the prom, and Valentine's. Then BOOM it's over with and done with and I'll be super old. Next up, the calendar that is chock full of activities and appointments and parties and weddings and visits to California and Miami and then the months will continue to fly by....
Yet I can't help feeling that there is a hell of a lot more coming at me that I can't even see yet....
"Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
And can I sail through the changing ocean tides
Can I handle the seasons of my life?
Oh oh... I don't know - oh I don't know
I've been afraid of changing
'Cause I, I've built my life around you
But time makes you bolder
Children get older
I'm getting older too
I'm getting older too...."
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| Photo Credit to Liz Smarra - friend since 1986.... |
All I can say friend is the things you share are very powerful and I am happy I get the privilege of reading them.
ReplyDeleteAwww Andy...love you.
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