…Of What Could Have Been

 

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At heart, I’m a glass is half full type of girl, although admittedly, I’ve had phases when the glass was half empty – and sometimes even bone dry. Still I think my propensity to be positive is what has kept me mostly sane on this autism journey. I try to keep my essays about Barrett positive, because I loathe the thought of anyone feeling sorry for us. But sometimes, sometimes I can’t conjure up my inner Pollyanna.

I’ve been thinking about my Bear-Bear a lot lately.  We recently had his annual IEP meeting, and it was good. As I mentioned last week, he’s also miraculously become a member of his school’s track team.  I’m so freaking proud of this kid, so much so that I occasionally feel guilty about it. The accomplishments of my other three children rarely garner the crazy enthusiasm that Barrett’s do. With Autism Awareness month coming up in April, I’ve been trying to decide what to write about and how to celebrate my son and all his peeps.

This past Saturday was Barrett’s autism anniversary. Twelve years ago we received the diagnosis. Twelve years – it’s unreal.  I can no longer claim it’s all just a dream.  The diagnosis wasn’t a surprise, but that didn’t make it any less devastating, life altering, or dream crushing.

I consider the four years after the diagnosis as the dark ages. Keeping a positive outlook was difficult.  With the exception of my daughter’s birth, I walked through my life with a very heavy heart. I was wounded and recovery didn’t feel likely. But recover I did. I’m not the same person I was pre-diagnosis, but I no longer consider myself broken.

I have new dreams for my son, ones that are more aligned to who he’s come to be. To coin a popular phrase, I’m hopefully optimistic about his future, because he constantly surprises me. Twelve years ago, I believed that with intensive therapies, Barrett would “recover.” I didn’t worry about the future too much. I focused on the present. By the time my son got to kindergarten, reality began to dawn for me. I accepted that he would have a life very different from the one I’d originally imagined. I grieved accordingly, and reconciled myself to our fate. That doesn’t mean I’ve given up on my son – far from it. I still have high expectations for him, but I made the choice not to dwell on what could have been.

Six years ago I never would have thought my son would play or participate in any sport that wasn’t supported by an organization like the Miracle League or the Special Olympics. And that was okay. I’m a proud and hyper cheerleader at the Special Olympics each year. So I’m thrilled (and honestly, scared to death) that I’m going to be able to cheer for Barrett when he runs his first track meet, on a team that is not specifically for special kids. That is if Mother Nature cooperates. Last week’s meet was cancelled and the forecast is looking dismal for this week’s event, as well.

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Why am I rambling on? Because my positivity failed me today. I don’t know if it’s because of all the autism awareness thinking I’ve been doing, or the looking back that I’ve indulged in because of the anniversary. My stumble down the rabbit hole surprised me. Lately, I’ve been thrilled about my Bear-Bear, but there it was. A melancholy-filled moment of weakness. A feeling of regret so strong, that it really did hurt my heart.

This morning, as I watched Barrett walk up our driveway to his bus, I experienced a pang of grief, almost like a foreboding, which is something I haven’t felt in a long time about Barrett. He was dressed in a GQ-like manner (because of course I picked out his clothes), and sporting a new haircut. He had his backpack on, and over his shoulder he carried a duffle bag filled with the running gear he would need for track practice after school. Bear usually gallops to the bus, because he loves going to school. But this morning, he sort of sauntered. He was grasping the shoulder strap of his track bag, so it wouldn’t slip off his shoulder. A wave of nostalgia slowly washed over me and started to pull me back. In that moment, he appeared so cool and confident, I had a flash of what might have been. Of who he may have been, if not for autism.

I hate self-pity. God, it’s a useless emotion and an obstacle to living a happy life. But man, sometimes, I just can’t avoid it.  But that doesn’t in any way alter the love, gratitude and pride I have for my son today.  No way.

Update: the track meet was cancelled.  I’d intended to write a recap of the event, with pride-filled embellishments, but the rain thwarted my plans.  So I’m recycling this post to link it up with Finish the Sentence Friday.  This week’s sentence is “My proudest moment is…”  See?  Barrett’s first track meet would have been perfect, but I think you get the picture.  Below are some pictures from this week, of Barrett, that also made me proud.  I think, but I’m not certain, that this could also count as a #1000Voices post, Building from Bullying.  I’d love for my fellow bloggers to chime in as to whether or not this post would classify.  The peer buddies in Barrett’s class and his fellow runners on the track team are shining examples of kids doing the right thing and standing up against bullying.  They lift my son up, and make his world a better place!

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Barrett and Miss Lydia, one of his peer buddies.  They were having lunch on a field trip.  I love this pic – they look like they’re on a date.  And check out the one below~!  Player!  He so reminds me of my brother in this picture, both the resemblance and the move.

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I love this picture (sorry for the fuzzies – Audrey took it).  Bear is walking off the field with his buddy Tommy, after track practice. 

Please visit my friend and the hostesses of this week’s FTSF Link up:

Kristi of Finding Ninee

Kerri of Diagnosed and Still Okay

Tarana Khan

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34 thoughts on “…Of What Could Have Been”

  1. Allie – as I read this, tears are streaming down my face!!

    You are such an amazing inspiration and I am very proud of you.

    xoxox
    Love you!

  2. You and I are quite alike Allie. I also loathe self-pity. However, some days it strikes like a bolt of unwelcome lightning. Huge kudos to you for sharing. I look so forward to reading about B’s first track meet and all the other track meets that are to follow. Yet again – great job Mom. Great job.

  3. My Sweet Allie. I adore you and really really relate to the hope and the doubt and the watching your little boy walk to the bus with confidence and with doubt. I still take Tucker to the bus but I know that this image of him going himself, or wanting to, is coming. Sigh.
    Also? I am SO F$CKING EXCITED for Barrett running track – he will blow your mind with his wings, I think. I hope. I signed Tucker up for Tae Kwon Do a couple weeks ago and have almost pulled him out every 30 seconds because is it embarrassing for him to not be able to do??? I don’t know, and he can’t say…

    Love you my friend. Sorry you’ve been in the ugly gray place recently. I have been as well. Here’s to getting out of it and remembering the grace of it all. The beauty and the light.

    And I cannot stand IEP meetings.

    1. Literally, an ugly grey place. I hate winter:)!!!!! IEPs used to make me nervous, but not anymore. I don’t know why. The early years were rough, though. Tae Kwon Do is tough, I didn’t dare sign B up for that. But T’s so young honey, don’t worry – kids that age don’t get embarrassed. I promise. Cammy played soccer when he was five and sucked. I mean worst soccer player evah! He just laughed and ran around the field, with his hands in the air, like he just don’t care. Ha:). Two years later – he doesn’t even remember. Hopefully you have a good, patient and understanding instructor.

  4. Allie, I am also wiping away my tears right now and seriously can’t thank you enough for sharing. I also can’t wait to hear more Barrett’s first race. My money is on him for sure and just so excited for him! 😉

  5. Allie, I’m sorry about your bout of self-pity. But I see you as being a really successful special needs Mom. I’m not sure about what happened following B’s diagnosis, but it is clear now that you are looking to help B along whatever path he chooses to travel. What he might have been could be much better or much worse than where he is now — surrounded by a loving a supporting family and school community. And your other children will see how much you love them, in addition to B. Your arms are big enough to hold them all!!!

  6. So glad to have found your blog through FTSF! Self-pity can be draining, but don’t be too hard on yourself. We are human after all and are prone to that emotion. But you do sound like a positive person, and I’m really happy that your son made it to the track team :)

  7. I totally relate to how you feel. Every now and again you see how different they are instead of how far they have come. It passes, but for a minute it’s like a punch in the gut. At least we know that it passes. I guess that is the good part of having done this for so long now.

    1. Randi, you’re right. It does pass – thank God! And Barrett has come so, so, so far. I was recently talking with a friend who has a son on the spectrum who is five. She is so overwhelmed, with beginning school, IEPs and filling out scales. I tried to tell her that when you become a veteran, (lol) all that is much easier to deal with. And filling out the scales when they’re older shows how how much they’ve accomplished, theater than all that they can not do. At least it does for me.

  8. Wow! Alli hats off to you.
    You must be radiating so much positivity in your son unknowingly that today he is a part of a track team.

    Can’t wait to read about his big event

    xoxo

  9. Oh Allie your honesty is so breathtakingly beautiful!
    “But man, sometimes, I just can’t avoid it.” Thank you for not avoiding, and for sharing your thoughts and feelings on this emotional journey of difficulty, strength, awesomeness, love, pride and gratitude.

  10. We always talk about you with pride and amazement. And we so enjoy watching B move thru life with accomplishment and determination thanks to two loving and devoted parents. Can’t wait to hear about the first track meet!

    1. Thanks Dana, that means a lot to me. Incidentally, I ran across a picture of you and Barrett from ten years ago when I was going through boxes in the basement (part of my clean/purge project). Fingers crossed that the track meet happens tomorrow (although there’s a chance of rain, yet again).

  11. You are such a wonderful writer. I always enjoy reading your post they make me laugh, cry and more importantly remind myself what an awesome person you are and how lucky your kids are to have you as their mom.

    1. Thank you Patty. Wow – such compliments! How are you? Did you have a good birthday? Trying to see if we can squeeze in an early Pittsburgh visit this summer. Can you still get discount tickets to Kennywood?

  12. Sounds like your little man is thriving with your love and support – I’m so happy for both of you. I don’t know your history, but hopefully optimistic sound pretty damn good to me!

  13. Ohhhhh my friend I so get this post. The what might have been does not mean that you love Bear any less than what he might have been. But it hurts and staying positive is freaking hard. Especially when you get that unexpected glimpse and it smacks you in the throat. Yet you remain half-full because that is who you are at the core. The woman who didn’t hold her son back because of his autism, but allowed him to run with the big dogs and succeed. Hugs to you!

    1. Oh, Kerri – this comment made me cry. Thank you so very much for your sweet words. And I know you understand and it makes me feel less alone, knowing there are other moms out there, like me. And I love this, “Allowed him to run with the big dogs…” Love!

  14. Allie – this is so beautiful and I hung onto every word. You sound like a strong and beautiful mother, and you sound honest. But SO strong. It’s not the same but sometimes I think of myself without anxiety – of what might have been. I don’t take long to grieve it because what I have is in front of me, but I do have moments of staggering grief.
    I hope you submit this piece somewhere because I believe it’s that good and I don’t take that lightly.
    On a shallow note, I saw a photo of you with friends on Facebook and I thought, “Man she’s really a gorgeous woman!” And your son (and all of your kids) are gorgeous and strong.

    1. Tamara, I do think the “what could have been” applies to your anxiety. It’s hard not to wonder, you know? Thank you for the suggestions about submission. It didn’t occur to me, perhaps I will. And I will take (positive) shallow compliments on my appearance all day long. Thank you!

  15. If you need to take some time for self-pity, take it. You’ve made the decision not to stay there, but a short visit every now and then is okay. I hope you are feeling a bit better, or are on your way there.

    “I have new dreams for my son, ones that are more aligned to who he’s come to be.” Such wise words, Allie.

  16. Hi Allie. I also have to admit tears welled up in me as well when reading this. That piece was so well written and heartfelt. The comment regarding ‘Melancholy-filled moment of weakness’ spoke volumes to me and I’m sure many others who can be momentarily pulled away into that ‘glass half empty’ mindset. Look forward to seeing all of you this weekend. Be good.

    Uncle Mark

    1. Oh Mark, thank you so much for reading, and for always being a Bear supporter – from the very first day. Check back in a few hours, working on a post that is the complete opposite of this. But it’s still make you cry – only happy tears! We’re all excited to see you this weekend!

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