i won’t go alone


My friends, I desperately hoped that by now I’d be shouting from the rooftops to tell you that the President had heeded our call and planned to acknowledge our community by lighting his house blue tonight. While I’m still holding out hope for a last-minute miracle, it looks less and less likely with each passing minute that we will see or hear anything tonight.

Earlier today, I received an invitation from the White House. I’ll admit that I checked it out seven ways to Sunday to ensure that it wasn’t an April Fool’s prank, but it turned out to really be from 1600 Pennsylvania Avenue. It said, “You are cordially invited to join senior White House and administration officials at an event in observance of Autism Awareness Month.” The event, whatever it may actually be, takes place at the end of April.

I am honored and I am grateful. I am anxious and I am excited. But above all, right in this moment, I’m tired. I’m sad and I’m frustrated. And just for a few minutes today I’m allowing myself the luxury of feeling pretty damn demoralized.

A blue light. It seemed so simple. It seemed so eminently doable. It seemed like a such a small thing that would be anything but to our community.

I wanted so desperately to make it happen.

I have accepted the invitation to the White House. The invitation was for one person only, but I won’t be going alone. I will be taking each and every one of you with me. I will be walking in the gates carrying our stories and our children’s stories – their challenges, their struggles, their hurt, their will, their victories, their indomitable spirits. I will do everything in my power to make sure that they are heard. That we are heard.

I’m so sorry.

74 thoughts on “i won’t go alone

  1. Aw, sweetie, you have NOTHING to be sorry about. President Obama, on the other hand? Well, you’ll straighten him out, I have no doubt. Perhaps you could invite him to attend one of those meetings your well-connected friend might hold. You know, the ones with other autism parents? Just a thought. Cause, you know, it’s always good manners to reciprocate when someone invites you to their house, right? xoxo

  2. Don’t apologize Jess – you are making a difference to so many. I’m glad you are going to the White House and may I suggest you offer a gift to the president….blue light bulbs!

  3. Don’t you dare be sorry! You got so far. SO FAR! And there is no better ambassador than you. You will rock Obama’s world. We know you will speak for all of us and all of our kids.

  4. Oh, Honey. You are OUR shining light. You already HAVE given us such hope and understanding and comfort and strength to keep pushing for more.

    We love you, Jess. We love everything that you are, and do, and give, in the name of your daughter, your family, yourself – and ALL OF US.

    We simply love you.

    ‘Mrs. Sergeant Major’ is so grateful for the voice you found for me. The voice you shared for our military families, too.
    Hooah, Jess. Hooah!

  5. Poop. And other four-letter words. It is disappointing. However, just as you will be taking all of us with you to Washington at the end of the month, we are all here with you today. Supporting you and supporting one another. Through your letter, we have made connections with each other. We are not alone.

  6. Please oh please don’t be sorry, you owe no one an apology! I myself wrote to the President not to long ago regarding bullying of children with special needs, I never heard anything back from him or anyone. You have gotten our cause further than most, you are truly a hero in most of our eyes! You give us a voice and make us heard, we fight daily for our children in a world of ignorant people, you just took our fight further! We are all standing and applauding your vigilance and courage!

  7. No sorries. There’s nothing to be sorry for. You are an inspiration to so many people and you are the voice of those of us who are far less eloquent.

  8. admitting sorrow means admitting that you have done something wrong. you haven’t. let me repeat, you haven’t. walk on DOAM, walk on! now head up.

  9. I can’t think of a better person to be there to speak on our behalf. Thank you!

    (And yes, we will want details on what you are planning to wear!)

  10. I know this meant a lot to you and many other people, Jess, and I am sorry for your and their disappointment.

    But you know what? Moments like your bakery visit described yesterday — THOSE are what really make a difference in terms of raising awareness.

    Each interaction like that is worth a thousand light bulbs, in my opinion.

    I hate that you feel the need to apologize. Don’t be sorry. Be excited about the opportunity to visit the White House. Most importantly, keep doing what you always do so well: shining a light on our children and families.

  11. Please do not apologize!! You are doing an amazing job on behalf of everyone effected by Autism. It’s the President that has let us down, not you – Please be sure to tell him as much when you go to the White House!!…. Lite it blue, such a small thing. I don’t understand why not!!!!

  12. Don’t you dare be sorry! You Go and put me and my boys in your pocket. This is a door of opportunity…just not the door you knocked on.

    You kiss the President for me. Let him know that I am disappointed, but I still love him.
    I guess he was a little too busy with 2 wars right now to go to Home Depot to buy a few blue lights!

  13. of course you feel disappointed, fighting the battle and not getting the result you wanted hurts. but i truly hope that soon that feeling will be replaced by pride. you should be so very proud of what you have done, the conversations you’ve sparked and how you have brought so many together. so many. love you.

  14. In any situation you are only responsible for doing your best, and the response of others is on their shoulders. You definately gave it your best and then some…just as you always do. Regardless to how the White House responds, there are many of us out here thankful that you fought a good fight!

  15. I am disappointed too, but you don’t need to be sorry. You tried. We all tried. President Obama should be the one who’s sorry for not hearing the voices of thousands of people in his country asking for something very simple. I’m frustrated too. I just can’t believe they didn’t hear us. We were so loud and strong in numbers. We are lit up blue here in NJ. Tomorrow we are doing a walk for Autism. I am proud to say that thanks to my friends and family I raised $600!
    You did your best Jess. We are all so proud of you! Thanks again for being our voice. We will NEVER give up!! And I like the idea of bringing the president some blue light bulbs as a gift!

  16. I so understand the disappointment, Jess, but you have absolutely nothing to be sorry about and I have no doubt that if the President disappoints us by not lighting the White House blue, you will undoubtedly set him straight! I am learning the hard way that getting people to listen is quite a difficult task and requires perseverance. You have already been so influential and changed so many. Never give up and never feel bad. You have been brave and courageous and done what most of us could not.

  17. Jess I know this is so disappointing, pls don’t apologize. Part of me thinks that invite to the White House will turn it blue next year. I couldn’t think of anyone better to represent all of us. The folks in the White House won’t know what hit them and THAT makes me excited. Finally one of ‘us’ will be right next the the bigwigs of our country, telling them what we go through. Thank you for being so brave and eloquent as you push forward. Ummm and I do believe a ‘White House Outfit’ will be so necessary. Luv you hermana.

  18. I can’t think of a better representative than you, Jess. Not a better respresentative, really. I know that you will not be alone, as our thoughts and feelings and emotions and our stories and hopes and strength and support and unity and belief in you (yes YOU!) will accompany you. I too and sad and a bit demoralized, as I wrote last night. I am grateful though that you, that we, have received a response. Perhaps this is the light we were looking for. It’s not blue and it’s not April 2nd, but it’s a beacon of hope. It has to be. It just has to be. Remember Margaret Mead’s words. We’re a small group, but we’re growing. We’re dedicated on levels that few can fathom. And in one small way, our voice has been heard. Our strong voice.

  19. Please don’t be sorry. Why should you be? You may have been a leading voice, but we were all behind you. This isn’t your fault. They said no. The blame lies there and no where else.I’d love to see you bring in a handtruck of boxes full of pictures of all the families he has disappointed with this decision, as well as pictures of all the buildings – more than 1,000 globally, that did light up. And, as far as I’m concerned, we now start campaigning for April 2, 2012. Maybe he will be more receptive during an election year.

  20. It is disappointing but you have nothing to be sorry for. You did everything you could to make it happen.
    I am so glad and excited about the invite you received. I couldn’t think of any one else that I would want to represent us all.
    Thank you so much for giving us a voice.

  21. You have as much reason to be sorry for the actions of someone else as I have to be sorry to my son for “making him autistic.” It just isn’t even thinkable.

    We all have done our best. You can poke him with a freshly manicured pointer finger for all of us – and remind him that we vote.

    xoxo…now let’s go light up a bunch of stuff blue, ok?

  22. You can not ever be sorry. In the end, it’s a damn light bulb. You will be speaking with people in the WHITE HOUSE. If you are half as charming in person as your words online, SOMEONE will hear you. All of us will be with you in spirit and with no more hope for you to accomplish than being heard.

    I have no idea what we will wear! Also, I know I overpaid for my blue-light special glowing on my porch.<3

  23. Don’t be sorry at all…you tried hard. It is disappointing to see that so many builings in this country and in other countries are blue, yet the most important one in our country isn’t. I want to thank you for being the voice for all of us parents out there. My 2 year old son has autism, and my 4 year old son has pdd-nos. It is a struggle everyday, but I wouldn’t change one thing about either of them. I can’t think of anyone that will represent OUR community better than you…so once again thank you from me and my 2 boys 🙂

  24. I understand the disappointment, I do, but please, please, please do not apologize. Because our voices will be heard. You have a tremendous gift for writing and speaking in a way that so many of us wish we could. Your grace under pressure, your way with words and eloquence is astounding. I am honored to be your friend and so very, very proud of you. You are changing the world with your words, with your daughters, with your friendship, and the example you set.

    And remember the moto: They say no, we say wrong answer.

    Love to you.

  25. Jess,

    I know it’s not the same. But my house is white, and we will be lighting it up blue. We are so grateful for your efforts.


  26. You should be anything BUT sorry. Sad, disappointed, dismayed – yep, we are all there with you on those. But sorry? Don’t you dare feel like you failed. You were, and still are, AMAZING! Even if it didn’t happen this year, your efforts have gotten the ball rolling and will surely be a big part of it happening next year. I am proud and honored to have you take on the task of being a voice for our community and I don’t know a single soul that could do it any better. Good luck at the White House – you are gonna be FABULOUS! ❤

  27. Jess, will you tell them at the White House abot the blue?

    I got a semi personal but nit really email from the president about supporting autism awareness and legislation and money… And everything but the blue, which in this moment is all I cared about. Sigh.

    Excuse my typos. First time on an iPad,a friend’s, and I haven’t entirely figured it out.

  28. And I couldn’t find a way to go back and add this… But I’m thinking that it may not be appropriate to go to the big house and fuss about the blue. Oh well… I had hope, too.

  29. Ah Well [sigh]. It would have been nice. No matter. Our bunch is not so easily deterred. You have still helped so much in your efforts to unite all of us . Thanks for all you have done in this noble campaign. We’re still on it with you. Perhaps next year! Meanwhile, we are exited & looking forward to your White House visit…..how exciting! Don’t U feel badly another second Jess. Robin

  30. That invitation is an AMAZING thing! I truly believe the blue will come, and in the meantime, what a fantastic opportunity for someone with such an eloquent voice. So happy for you! Lived there fifteen years, let me know if you need some good restaurant recs!

  31. Thank you Jess for al you have done and I know will continue to do. You will speak for all of us….make sure you wear blue at the luncheon and bring the blue lantern!!!

  32. Sister, you have nothing to be sorry for. Your voice is such a powerful one for our kids and our community. You are wonderful, and I am so proud that you get to represent us at the White House. Thank you for all you do.

  33. No apologies. You have done so much. And yes, you certainly are not going alone, are taking all of us with you (you’ve got that shrink-ray, right, so we can all fit in your pocket?) Thank you for all of us, for all of our children.

  34. Jess,
    Because of you I will have blue lights at my house and so will many of the people I’ve reached out to over the last month. Because of you, my friends and colleagues at work sent emails to the White House and talked to their families about autism awareness. And tomorrow, we’ll be driving around town on a mission with my daughter, waiting for the buildings to turn on their blue lights at 7pm like it’s Xmas. I know you’re not responsible for all of this. But you are responsible for getting me to do something and become more actively engaged.
    Thank you.

  35. We’re all grateful for all you’re doing and have done. This is a wonderful honor. You haven’t failed, Jess!

    Love you,

  36. Jess,
    I know you must feel defeated, but like our kids each step really is Enormous. Each post you have made on your blog. Your letter to the President and your letter to Oprah calling on others to do the same….that is the Blue Light. Each encouraging word you write so that others know they are not alone……that is the Blue Light. Your advocacy and your sharing are like the first words from our little one’s mouth, or watching them point for the first time…..little miracles such hope….that is the Blue Light….you already lit…the White House just does not know it yet……

  37. Jess, you’ve done so much, amazing what you accomplished already! It’s a disappointment, sure, but I know you’ll give ’em an earful if given the chance. What an honor to perhaps even have that chance in a just a few weeks! Thank you for all you do on our behalf and on our children’s behalf. It inspires me, truly.

  38. Wow! What if he had changed the bulb but that was it – what if he did so without reading and hearing your words? I think what you got instead is so much more. The whole purpose was to spread awareness and now you have an audience with the president. You will be heard! Only goodness can come from that!

  39. Your light shines so bright! You speak loudly and clearly AND your voice has been heard! I have a couple of extra blue bulbs you can take with you. Maybe with the economy, they didn’t think they could light the white house.

    You should be proud of your hard work!

  40. Don’t be sorry ~ you should be very proud! Your efforts have brought many, many people together with a very positive message. In blue light & love.

  41. You have nothing to be sorry about. You wrote a letter, and with that one letter you managed to pull a divided community together. There is no better person to represent our families at this event than you.

  42. Dont be sorry, please feel proud of everything you have done for our community, your community. Thank you for being our voice, the person who translate our feelings and struggles into words. I feel very happy that is going to be you the one representing us!!!!

  43. The purpose of the blue lights was to further the conversation and while I’m disappointed they couldn’t screw in a light bulb, you should be proud, you furthered the conversation! You will be there and I have no doubt the light house will be blue next year. It’s not in the timeline we would have liked, but we’re Autism Parents, we’re used to that. We know better than anyone how to work with that. And we know how to celebrate the victories, especially the small ones. Your invitation has filled me with hope and I know you will represent our children well. Please celebrate that tonight.

  44. Hum. They have no idea who they are about to meet do they? By the time that phenomenon called Jess of DOAM blows out of town, I suspect the whole DC crew will be on board, not just for 2012, but for a lifetime.

  45. You did it! You’re going to the White House! I truly believe that your presence at this event will do more to help our cause than anything else. While I share your disappointment that the President didn’t take part in the symbolic gesture of lighting it up blue, I am cautiously optimistic that you will help to accomplish things that are much more substantive than symbolic. Thank you for representing us in WDC. You’re amazing.

  46. Pingback: Blue « Run Luau Run

  47. It is very disappointing but not unexpected, unfortunately. Maybe you can take some blue lightbulbs and change the ones in the bathroom! A friendly little reminder! ;D

  48. Jess,

    Patience is a virtue. Persistence gets the job done. This is just another leg of the journey. So you thought it was a 5k and it turned out to be a marathon.. Just pace yourself. I have a feeling the white house will be bathed in blue in years to come.

    By the way, thanks for taking us with you. This is SO exciting!!!!

  49. This is no failure it is rather awesome to have gotten that attention from your wonder words. You are everyone’s hero and messenger.
    As your dad however, I would remind you that you should bring some cake or something sweet when you visit someone’s home.You might also offer to help with some of the president’s speech writing as no one could do it better than you.
    “WE”are all soooo proud of you.

  50. Focus on what you DID accomplish! And this is just the beginning. You opened a door where once there was only a wall. Be open to what is going to happen next and celebrate that you had the courage to go where no one went before. God bless, be well and hugs and love to all.

  51. What could you possibly feel sorry for? You are changing the world! You are changing people! You have changed me! I read your blog…I cry with you…laugh with you…pray with you…and I believe in you! Your heart is big and your love is strong. It may not have happened this year…But when it does, you played a huge role and we will all smile with you! My son was diagnosed Pdd in November and you and your blog have been keeping me going!
    Today I am holding a fundraising event, I have the business light up there entryway blue. This was because of you. Every little bit helps, every conversation matters! Please know even though I dont know you…everyone who reads this is here for and because you cared enough to share your world with us!

  52. We are all disappointed yet so proud that you will go and leave OUR mark at White House. Maybe you can wear some flasing bkue lights that day or some blue glow bracelets!

  53. That invitation represents so much more than a Blue Light bulb. It is putting a person, a face to Autism. That face may be yours Jess but like you said, you represent us all. I could not think of a better person to do so either. I have only been following you for a short time now, but in that amount of time you have inspired me, moved me and more importantly made me feel like I am understood and not alone. You have nothing to be sorry for my friend. You are a Hero in My eyes! Go get them Tiger!

  54. I just read your letter to the President. Of course, I cried. I truly couldn’t have put it better myself. All the points that you touched on are so right on. We are the parents of a very special 32-year old Autistic son, who is our life. We have two other sons as well and, as a family, we have always supported and done everything that we could and knew how in our community to raise awareness of the ‘devastating’ condition that Autism is. We raise funds and donate what we can ourselves and ‘Walk’ every year since its inception, for Autism. We are encouraged that there are so many more people now joining in on this cause than there was when our baby was diagnosed. We just wanted to say “Thank you” for all that you have done and for all that you continue to do to help better the lives of all of the children and adults who suffer from Autism. May God bless you and your family always and continue to give you the strength, courage and resolve to make a difference in the lives of so many. We will forever keep you in our prayers. Good luck at The White House.

  55. Holy Crap! A Presidential Proclamation AND an invitation to the White House!?!? That is Awesome! Sometimes it’s okay to miss your goal as long as you hit the mark, and you DEFINITELY hit the mark! So proud of you! You ROCK!

  56. Pingback: Lighting It Up Blue at The White House « Spectrummy Mummy's Blog

  57. Don’t be sorry. We are proud of what you are doing representing us all parents of Autistic children. Thank you for all that you are doing 🙂

  58. Jess, did you see this post:
    He may have not had the light on blue, but at least by issuing a proclamation and then, by inviting you, the most eloquent and heartfelt person to come to The White House at the end of the month…that is good news! I am very happy to hear that you have been invited to The White House and that you will get the chance to speak you mind with him later in the month…have not heard anything about Oprah acknowledging World Autism Day…did you ever hear back from her camp?
    Well, we had blue lights on all weekend outside our home…so you are making a difference, one family at a time.
    I ended up writing two posts about your post, too…just FYI.
    More than the blue lights has been the opportunity to reach out and try to tell others how important it is to have not just awareness but acceptance and money to fund programs and research.
    Well, hope that you and the family had a wonderful birthday weekend for Brooke.
    Colleen and her little crew here in FL

  59. Jess,
    You are amazing and you definitely do not need to be sorry. I am so glad I found your blog and your letter and you. You have been an inspiration this week when I desperately needed one. Thank you!

  60. Thank you Jess. We will be there and bringing the entire community with us. We are looking forward to it!

  61. Jess you are an amazing woman! Walk proud thru those gates! Thank you so much for your blog! Again, I am crying!

  62. This is really impressive. Just goes to show what a determined parent can accomplish. You’re an ambassador for us all and bring hope to our cause! Thank you for all of your effort and encouragement!

  63. aw hun, i’m sorry too. i know that feeling all too well. i tell my boy he can do it, he can do it, and then he can’t and i feel responsible for giving him hope. like, somehow, his disappointment is my fault for believing in the first place. but then, i get up, dust myself off, look at the next day and tell him, “you can do this”.

    are you carrying the burden of a responsibility to all of us?? in addition to the one of being your daughter’s advocate?? that is not what this is, ya know. ah, the duties we assign ourselves, haha. i don’t think anyone is ‘counting’ on you to be the catalyst for change. we’re hoping they hear you, but no one expects you to carry all of us. hell, we’re here b/c we’re tired of carrying ppl and need some feeling of kinship. these ppl that comment here are trying to carry YOU, lift YOU up.

    if you feel the need to apologize to us, then we owe you an apology. I’m so sorry hun.

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