hope, meet reality

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jess
@diaryofamom jess

At the @autismspeaks #greaterbostonwalk kickoff. So inspired by the incredible people who come together to support our kids.
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jess
@diaryofamom jess

Can’t stop crying. Incredible speakers representing myriad groups who support our community. So touched. @autismspeaks #greaterbostonwalk
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jess
@diaryofamom jess

Came home from an incredibly inspiring night w @autismspeaks to find baby girl an epic disaster. Hope, meet reality. #Autism
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The walk kick-off was amazing. They always are. They are inspiring and emotional, wonderful and draining. They remind me of both how far we need to go and how far we’ve come. They remind me that we stand on the shoulders of those who came before us – those who started this journey years before the age of the Internet changed it all. Those who fought to find each other in the dark – and did. Those who could barely put one foot in front of the other some days and yet somehow found in themselves the strength to start foundations, lobby lawmakers, convince educators and churches and businesses that full societal inclusion was not only humane, but necessary. Those who brought the plea to science – help us.
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These events remind me too of just how big our village is – how many people work tirelessly in the trenches to support our families. There were people on the spectrum, of course along with aunties and grandmas, fathers, sisters, brothers and friends.
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But so too there were Neuropsychologists and teachers, insurance advocates, researchers, BCBAs and students who had chosen to dedicate their studies – and then their lives –  to helping our kids find ways to communicate.
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And then there were those who seemed to have no reason to be there at all. Those whose lives are not directly effected by autism, but who have instead made the decision to climb into the trenches with us, roll up their sleeves and get to work simply because it is the right thing to do.
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Luau and I were lucky enough to spend part of the evening talking to a few of our all-time favorite people – Sean O’Brien, Trish DiSilva and Tommy Mari. Sean, Tommy and Trish represent the 25,000 members and families of the Teamsters Local 25, but to us, they represent something far bigger than all of us – hope.
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The teamsters come each year to support our community. They turn out at the walk in nearly unfathomable numbers to raise awareness, to create understanding, to help us find ways to make the world a better place for our kids.
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They throw a huge fundraiser each year, the Light Up The Night Gala for Autism, bringing together people from nearly every walk of life to learn about autism and to raise staggering amounts of money for research and local support programs. Over the years, they have never wavered. Between the gala and the walkers, they have contributed nearly a MILLION dollars to the effort.
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Luau and I have tried to express our gratitude to them again and again, but I’m afraid we come up woefully short. How does one thank someone for that kind of commitment to a cause that they are connected to only by compassion? I have no idea.
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And so, as we always do, we left the kick-off with full hearts. With hope for better days. With belief that, as Luau said in his wonderful speech, “A world in which suffering from autism no longer exists” might be a reality.
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And then we got home.
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A friend was sleeping over – the little girl who is both Katie’s friend and Brooke’s former fourth grade buddy from school. Thank God it had been her.
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Baby girl was struggling. Julie explained that Katie had gotten the hiccups. Brooke had melted down. It had been hours, but the effects were far from gone. The night had been about damage control.
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I went into Katie’s room to find her on her bed and Brooke curled up next to Jenny in the trundle on the floor. The big girls were whispering to one another as quietly as they possibly could.
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It was all I could do not to kiss Jenny when she looked up at me and said, “Don’t worry; it’s fine. I’m used to it.” Ok, fine, I did kiss her. I couldn’t help it.
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As soon as Brooke saw me, she grabbed my neck and pulled herself into me. Her breath was still uneven. He eyes were swollen and bloodshot, her cheeks pasty and pale. I could only imagine what had brought her there.
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I suggested that she come into my room with me. Perhaps Katie and Jenny could have a few minutes to breathe. To giggle. To be ten.
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Brooke’s little body was depleted. A marathon melt down is a marathon after all. We went down to the kitchen to find a snack. And then another. And yet another before she could settle down for the night. At 11:30 I finally drew the line at a bowl of spaghetti.
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I asked if she was ready to go to her room. My girl sleeps in her room. In her bed. I can think of perhaps three times in her life that she’s slept with me. It’s simply not what she does.
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She refused to leave. “I will stay here with you,” she said.
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My girl thrashed for TWO HOURS. Every part of her little body betrayed her total lack of ease. For TWO HOURS, she kicked and clawed and hit and rolled, all while holding on for dear life. She never once let me go.
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At some point in the middle of it all I grabbed the phone by the side of the bed and with one hand typed the following:
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Came home from an incredibly inspiring night w @autismspeaks to find baby girl an epic disaster. Hope, meet reality. #Autism
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And so we continue on. We fight through the days when it seems that all we can do is put one foot in front of the other. But we do so knowing that there is an army of people – people like Sean and Trish and Tommy – standing with us, shoulder to shoulder in the fight.
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Thank you, from the bottom of my heart, to the Teamsters Local 25. We love you guys!
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17 thoughts on “hope, meet reality

  1. Ahhh the highs and lows of parenting a child with autism. That had to be tough.

    The Teamsters raising almost a million dollars is amazing and wonderful. What a testament to people who want to help and make a difference for our kids. Thank you!!!!!

  2. I’m so sorry that Brooke struggled so last night. I see so many days and nights that she “leaps and bounds” and they’re amazing but the times that she has her epic disasters are so hard–so very hard. Thank goodness, she has you to hang on to.

    Love you,
    Mom

  3. And so it goes The autism roller coaster. That’s a lot of up and down for everyone in the span of a few hours. What gives me hope is to read about a group like the Teamsters. All of our sponsors are wonderful, but as you say the ones in the trenches with us shoulder to shoulder are the ones who reall impress me because they WANT to do more than give money. Imagine? They want to know our kids and our stories and BE with us. These are friends. I hope they understand how unique they are and how very grateful we are.

  4. When we walked last year I was blown away by the Teamsters and their commitment to the walk. I felt it in my heart. I’m so grateful to them, and for their understanding of hope and reality. Thank you to them and to you always.

  5. I’m so sorry it was such a rough night for your sweet girls and their friend. What a good friend she is though! Very much like the teamsters but on a one-to-one level! LOL

    To the Teamsters, you may never know how much your support means to so many families. Truly. Thank you for caring about more than just writing a large check. It’s the gifts of time, understanding and connection which mean so much to us. Thank you, Thank you!

  6. Hope, meet reality. I’m so sorry it was a rough night, for you and for her. So glad she has you to hold onto.

    Connection by compassion-A million dollars–that is amazing teamsters local 25! It means more than they will ever know, that there are people who would get involved when they don’t have to, give their time and energy, to raise funds and awareness. Thank you, thank you.

  7. The dinner sounds amazing! We did a walk for local (wonderful) organization called POAC(Parents of Autisitc Children) in April. Autism Speaks had their kick off dinner here too, last week. But the walk is in October, just a few days before my baby’s due…so we have to miss out this year. I know there will be many more opportunities though.
    Sounds like Mama didn’t get much sleep lat night. Here’s hoping the weekend brings a *little* rest. I said JUST last night: “Cymbie is doing SO amazing good, an SO bad at the same time”. And so it goes, I suppose… xo

  8. I really cannot express in words my gratitude toward the Teamsters Local 25. As amazed by them as I was the first year I had the opportunity to meet Sean and Trish, it was the ENDURING commitment they have, the fact that they do this EVERY year, and the fact that every year they give more.

    Thank you Local 25 for making such a huge impact on making the world a better place for my little girl, for making this father not just hope, but believe.

    Sean, Trish, Tommy and the rest of you in Local 25, you are truly Heroes to me.

  9. I’m sorry that Brooke struggled. And I’m moved by the Teamsters involvement here. It’s so touching, so important to have people who see us, see our kids, see their worth. It’s so profound when it comes from people outside of our community. Really, truly profound. My sincere thanks to them.

  10. So, so thankful that the Teamsters are there in the trenches among us. They take love and understanding to a whole new level. Thank you. Thank you.

  11. The Teamsters Local 25 are an amazing bunch of people. So kind, understanding and thoughtful. My father who passed away 3 years ago was a 30 year retired Teamster. He was involved from the beginning when Teamsters decided to support Autism. Trish and Sean are wonderful people. My father was such a strong believer in everything the Teamsters stood for and so proud to have been a member of such a strong, dedicated and hard working group of people. Its so great to know that people really do care about Autism and what it means to have every opportunity in life. Thank you !!

  12. Sorry you had such a rough night. Your daughter is very lucky to have you to hold onto. Thanks for sharing that info about the Teamsters – I didn’t realize they did so much. Hope you can all get some rest this weekend.

    @ Teamsters – Thank you for all you do for all of our kids.

  13. Oh, man we have those days too. I am more and more understanding the “beyond his conscious control’ nature to some of my son’s behaviors. So many kids melting down right now, overwhelmed. Big hugs. And how wonderful that you could be so there for your daughter. You are lucky o=to have each other. All of you.

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