Update on Graham

November 4, 2009

Graham Photo for Blog4

A few months ago, I wrote a post about my son Graham.  I was blown away by the response I got and the lovely supportive comments and emails that followed.  At the end of that post, I mentioned that we were waiting on the Seattle school system, waiting to see whether a) doing the right thing for our children or  b) bureaucracy would win out.  I’m happy to tell you that this one went to the good guys (and gals).

About a week before the developmental preschool program was set to start, I got a call from a woman who told me she would be Graham’s teacher.  We set up a meeting at his new school and were introduced to his teacher, the room assistant, the speech therapist, and the director of the entire program.  We agreed on an IEP (Individualized Education Plan) for him with goals for the next few months.  We were assured that the (now updated) results of his testing will follow him for the next three years, so his status as a student with special needs does not change as we approach next fall and the utter confusion that is kindergarten in North Seattle.  We were assured that they would help us navigate those waters.

Graham’s new schedule started on September 21st.  He goes to school from 1-3:30 four days a week and also continues to go to his old prechool 9-12:30 three mornings a week.  On Monday and Tuesday, he is essentially in school from 9am-4pm.  This is a lot of a yet-to-be five year old who was still taking a 2-3 hour nap almost everyday up until the schedule change.  The first few days, when I got on the little school bus to help him off, he was totally passed out.  Evenings became really tough for him as the exhaustion set in.  We re-organized.  We set his bedtime much earlier – the same as his younger brother – and things improved.  Now he seems to be adapting to his new schedule.  And he is very happy at his new school.

Graham comes home singing songs I have never heard before and talking about parts of his day without prompting from me.  He brings home art projects he is extremely proud of and he finally – finally – potty trained.  I was starting to wonder if he was going to go off to college in diapers when his new teacher suggested that we tell him the rule at the new school was underwear only.  Within four days he was completely trained with not an accident since.  It was yet another lesson for me in not underestimating the wonder that is Graham.  When the light switch turns on it is on.

Graham photo for blog1

Our new routine is as follows.   I pick up the boys at morning preschool, drive to the “new school” which is, thankfully, only a few blocks away.  I park the car, gather up the boys, and then we begin one of the sweetest 1 block walks I will ever know in my life.  Yes, it involves shivering and/or getting soaked these days, but to hold two little boys’ hands – one of them wearing a backpack almost as big as he is – as we approach a real live big boy school…  It’s almost more than I can handle.  Nostalgia for what will not be someday overtakes me and I sometimes just have to stop and watch them.  I know it’s just the blink of an eye before they will stop holding my hand and then just another blink before they don’t want to talk to me at all.

Graham turns five years old at the end of this month.  I had thought about writing this post in honor of his birthday but I had an experience while at Jen’s yoga retreat a couple of weeks ago.  Not to sound too woo-woo on you here, but I always dedicate my yoga practice to Graham.  Some yoga teachers will invite you to set an intention at the beginning of a class and it is always his beautiful face I see at that time.  No thoughts, just his face, and the hope that my practice will send some extra energy his way.  He is my intention, my dedication.  Just like every time I catch the clock at 11:11 or I throw a penny into a fountain, I think of him – wish something for him.

Graham Photo for Blog3

In Jen’s peaceful serene yoga room, I poured out stress and toxins with my breath and my sweat.  At the end of two hours, I felt utterly spent and exhausted in the best kind of cleansing way and laid happily on my mat for shivansana.  In the first few moments of that rest, Jen turned on some of the music from The Mission – that glorious, heart-stirringly beautiful piece of music that can bring tears to my eyes even when I am not feeling overly emotional or exhausted.  And in a moment, I had tears streaming down my face, mingling with the already drying sweat from the class.  In that moment, the following thought came to my mind – almost as if someone had whispered it in my ear or I had seen it written on a blackboard – “Why Can’t It Be Enough?

The day before I had spent the morning with Graham.  He had a very low grade fever, with no other symptoms, and I decided to keep him home from school.  I still had errands to run and he happily came along with me.  Before we went to pick up his brother, I took him to lunch at one of his favorite spots.  We were sitting there, waiting for our lunch, and I was over-conscious of the fact that we weren’t talking.  It’s not as though we were silent, but there was very little back and forth conversation as there would be with a typical child of his age.  I wanted that, the flow of conversation, so badly.  I asked him questions on topics where answers could come easily for him, and I would get my one or two word answer, then – quiet.   I just kept running my hands along the baby-soft skin of his cheek, or bringing my face to the top of his head for a kiss and inhaling the intoxicating smell of clean little boy hair.  I told him I loved him.  I told him I was proud of him.  He kept looking at me and smiling, unaware that I was longing for more.

In my shivasana moment, I saw that scene again with new eyes.  And therein lies the question – “Why Can’t It Be Enough?“  Why can’t who and where he is right now be enough?  Why must I always notice who and where he is not?  This is not new territory – it is my biggest challenge with him.  And what I really mean by that is the challenge with myself.  Choosing to celebrate all the many varied things that makes him wonderful instead of pointing out (in my own mind) all the ways he is not like his friends is just that.  A choice.  And here is where a mom in a movie would suddenly change her entire her attitude and embrace her child wholeheartedly.  Everything would change and happiness would prevail until the credits rolled.

Obviously, this is not a movie and life is more complicated.  I am not one of those people who can wish something and just make it so.  I wish I was more peaceful about having a child with special needs and I work hard at it every day.  Sometimes I am so thankful for him that I can hardly believe my luck.  I watch a child on his preschool playground haul off and hit another child and I wonder, “Is that what I want?  A typically developing bully?”  Of course not.  I’ll take my speech and cognitively delayed sweetheart any day of the week.  My baby who thinks life is nothing but fun and happiness  – as every almost-five-year-old should.  My baby who who touches people’s lives.  When he leaves morning preschool, there is a chorus of “Goodbye Graham!” from kids and teachers alike.  Sometimes I can’t help but wonder what lesson I am being taught by the challenges he brings.  I struggle.  But lately I keep coming back to that big question and it makes my vision blur every time.

Graham Photo for Blog2
(I love this picture of him.  It is pure Graham.  Smiling and in motion.)

I don’t have an answer here and I certainly don’t have any advice.  This will be my journey with my older son.  My journey with Spencer will be different.  Randy asked me if I ever make a wish for Spencer or dedicate my practice to him.  Nope.  That boy will present other challenges but he does not need my yoga energy right now.  Every parent travels down a path with a child.  Sometimes that path is clear and easy and sometimes it is twisted and complicated.

When we first settled into speech and classroom therapy with Graham, about three years ago, his teacher handed out an essay that a woman with a special needs child had written.  It’s called Welcome to Holland and it compares awaiting the birth of a child to planning a trip to Italy.  You buy your tickets, you book your hotel, you anticipate the food you are going to eat, the sights you will see, the people you will meet.  On the flight to your long-awaited destination, the flight attendants tell you to prepare for the landing in Holland.  Holland?  Windmills, canals, wooden shoes – what?  At first you are floored by this change in your itinerary – your entire world is thrown off.  Your arrival takes a huge adjustment.  This is not at all what you signed up for.  And then, slowly but surely, you do learn to adjust.  There are wonders to behold in Holland.  It is different than Italy but it isn’t any less special.

I never thought I had expectations for my children.  I would be fine with them being a railroad engineer or a physicist.  They could go Ivy League or state school, or no college at all.  They could be an athelete like their dad or a thespian like their mom.  I guess I just always assumed they would be “normal” and I think that is why I got Graham.  My favorite comment from my last post about him actually came from the director of his morning preschool, herself the mother of a child with special needs.  I’m paraphrasing here, but she said that these children come to us not necessarily to teach us a lesson or because we can handle them or we “deserve” them.  They come to us because we as parents are strong and we can advocate for them.  They need us to fight for them.  I hold onto that thought everyday because it is such a strong and powerful way to think about life with Graham.  I got him because he needs me and because I am lucky.



49 Comments »

  1. Thank you for such a beautiful post. I am glad Graham is doing well and the school is working out for him. My little nephew is 2 and has had struggles since birth. He has been to Mayo, to several specialists, had every test done, but they don’t know what is wrong. He can’t smile, crawl, make eye contact, or even eat on his own. He has a feeding tube. It is really sad. We just wish we knew how to help him. They think he has a rare form of cerebral palsy. His muscles don’t function properly, he also has trouble breathing. He is having surgery on his lungs today and I pray all goes well. My sister is so good with him. It breaks my heart that he is trapped inside his body. He is such a cutie. He is very special to us and we love him so much. He is a blessing in our lives. I know he was given to our family to teach us and help us. I just want the best for him. Again, thanks for sharing your thoughts/feelings. You are a great mother.

    Comment by Maria — November 4, 2009 @ 10:10 pm

  2. Oh my goodness, in tears, my friend. Graham is so lucky to have you as a Mum, just as lucky as you are to have him. Such treasures, the both of you. So much love to you and your family.

    Comment by tara — November 4, 2009 @ 10:10 pm

  3. This is just lovely Dana. Don’t feel guilty for wanting more — we always want more for our children — we worry about how the world will treat them and we wish we could keep them safe. It’s OK to want normalcy or anything different for our kids; it doesn’t mean we love them any less.

    I’m glad Graham’s school placement worked out — I know the school thing has been in chaos in Seattle.

    Comment by Kate @ Savour Fare — November 4, 2009 @ 10:23 pm

  4. Beautiful, Dana.

    Comment by Amy B — November 4, 2009 @ 10:30 pm

  5. This was such a heartfelt and well-written post. Graham is lucky to have it to look back on someday. It sounds like he’s come a long way over the past few years and I bet he’s stronger than you even know.

    Both of your boys are adorable beyond words!

    Comment by maris — November 4, 2009 @ 10:51 pm

  6. I just wish I could reach through and give both of you a huge hug. That was so beautiful, I am literally sitting in my office in tears. He sounds like an amazing boy, and you are an amazing mother.

    Comment by ActiveFoodie — November 4, 2009 @ 10:53 pm

  7. Oh wow-thank you for sharing! I always thought your blog was beautiful (I’m a non-commenter!!) and today’s post was incredible and so full of love. Our journey’s may not be what we have planned for ourselves/our family, but they make us who we are.

    Comment by Heidi — November 4, 2009 @ 10:59 pm

  8. Forgot to say it before (was too emotional – the hand holding got me) but I also wanted to say how wonderful it is to hear that Graham is flourishing so.

    Comment by tara — November 4, 2009 @ 11:18 pm

  9. Sounds like he’s doing wonderfully at his new school, and you’re doing wonderfully as a Mom!

    Comment by lisaiscooking — November 4, 2009 @ 11:46 pm

  10. Like your other commenters, this post has me in tears. I felt emotional from the first few lines — maybe because I, too, am a mother of two boys, and because you and I have now met, however briefly.

    You’ve touched us with this, Dana. Yes, you are lucky to have Graham, and he is lucky to have you, but we are lucky to have you both.

    Holland indeed.

    Comment by Cheryl — November 5, 2009 @ 12:06 am

  11. Dana, this was the most candid and beautiful blog post I’ve ever read. Thank you for being so vulnerable and blessing us so much.

    Comment by Julie — November 5, 2009 @ 12:19 am

  12. Graham sounds very happy- which is what all of us parents want our children to be—at peace and happy. You are both very lucky to have eachother :-)

    Comment by Kristen — November 5, 2009 @ 12:33 am

  13. Thank you for sharing, Dana, and in the sharing, know you have gained something in return. The support and love of a reader.

    Your boys are beautiful and you as well. It sounds like Graham is happy (he certainly looks so) and growing and learning and is doing it in the way that is best for him. My older daughter rarely spoke in elementary school, was extremely shy and withdrawn around others. She is now a radio news reporter. My other daughter, the tomboy in the family, developed Rheumatoid Arthritis at the age of 16, taking sports away from her with devastating effects. She is a minister. I tell you this to give you courage, to know Graham isn’t done yet, to know that you are doing what is right for him, and for Spencer. You will be a wonderful advocate for him, and in the doing, for other children who do not have someone to advocate for the.
    Ah, I didn’t mean to go on. Thank you, again, for sharing.

    Comment by Penny — November 5, 2009 @ 1:57 am

  14. As always I am floored by your ability to share your thoughts this clearly with us. I love what the director of that preschool said. Graham is set for life with you as his mom. He is one lucky boy and you are forever changed for the better because of him. I believe that, even if some days are particularly difficult.
    And what is it with Yoga teachers and the Mission soundtrack, ahahah?!! I do the same thing in my Pilates class :)

    Comment by Helen — November 5, 2009 @ 2:56 am

  15. Dana,

    You inspire me in so many ways!

    Nancy
    Mom of Four, likes to cook and keeps saying that she is going to try Yoga:)

    XOXOXO

    Comment by Nancy — November 5, 2009 @ 3:33 am

  16. Oh,Dana. Such a lovely post. Thank you for sharing.

    Comment by Jeanne — November 5, 2009 @ 3:41 am

  17. You are an amazing woman, and an amazing mom.

    Comment by Heather in SF — November 5, 2009 @ 3:52 am

  18. what a great post. you are a wonderful mother. thank you for sharing such personal story.

    Comment by Emily Rose — November 5, 2009 @ 4:01 am

  19. Thank you so much for sharing, Dana. You paint a beautiful picture of such a trying time that I am inspired to dedicate more of my life and my intention to those I love, and to those who are most in need. What a powerful reminder. I am grateful to know you and all your boys.

    Comment by Sage — November 5, 2009 @ 4:12 am

  20. I am continually impressed by your vulnerability. You make your life real to all your biggest fans in the blogsphere.
    I don’t have kids yet, but I am a daughter. In retrospect, I remember a number of the sacrifices my parents made for me, and am so grateful. Know that one day, after the phase of hating you passes (and oh it will pass) he will cherish little things like this post, lunch dates and your tender heart. It will be worth the fight. Thank you for such great perspective, Dana.

    Comment by Sara — November 5, 2009 @ 4:25 am

  21. My vision is blurred, too. Perhaps it’s just joy that Graham has such an awesome mom, or perhaps nervousness that my own path with my own Graham will be as challenging. In either case: Beautiful.

    Comment by Jess from Hogwash — November 5, 2009 @ 4:54 am

  22. Happy to hear that things are coming your way. For me, even with a “normal” child I find that most schools are not built for following the kids and their needs, their special personalities, it’s for the kids to follow the schools’ system. It’s not for everyone, “normal” or not. Each one of us has a purpose in life. Most of us survive being pressed into the mold, but some need more caring and protection so they can give the world what they are destined to do.

    Comment by Nurit - 1 family. friendly. food. — November 5, 2009 @ 6:55 am

  23. First time reader here, (saw the link on twitter), but I had to comment. This could be written about a little boy I know — I am so heartened to hear that things are working out for you. Thank you for sharing this story.

    Comment by Louise — November 5, 2009 @ 6:56 am

  24. Thank you so much for your touching words! Your honesty and outlook are inspiring. I am bawling as I type this….it really struck a chord with me. My younger daughter is not a special needs child, but I’ve always thought of her and spoken of her as difficult and challenging, where my older daughter is easygoing and compliant. What you said about celebrating who your child is and not comparing them to others really made me stop. And your story about Holland was amazing…my daughter is Holland….no less special and amazing in her own right. It’s not her that needs to change, but my outlook and thoughts that must change. Thank you again for post today!

    Comment by Wendy — November 5, 2009 @ 1:00 pm

  25. Wow Dana. Such a heartfelt post. You have such insight and reflection on your son. It is amazing and no wonder that you were given the gift of Graham.

    Comment by fresh365 — November 5, 2009 @ 1:40 pm

  26. thank you thank you! thank you for opening up and sharing your story/life. It is just what I need to start the day. The trip to Holland analogy is amazingly true. I think we all deal with some of that no matter what our situation. I know that my impression of being a mother and a guide for my son is completely different from what I had imagined. I’ve learned that he doesn’t need me or want me the way I expected him to- and instead of wondering what’s wrong with me as a parent, I need to adapt and learn what it is that I can give him and fulfills his life.

    Your strength and your words have given me such a good perspective and I thank you for that.

    Comment by Tracy — November 5, 2009 @ 5:04 pm

  27. Thanks Dana for sharing your thoughts so beautifully. I feel warmth and love for Graham radiating from your words.

    I struggle with identifying where I end and my kids begin. I want so much for them, but sometimes, I have to admit it’s really about me and not about what’s best for them. Especially my older son. It’s a struggle to let him be who he will be.

    Comment by Lynn P — November 5, 2009 @ 5:17 pm

  28. What a lovely post. I’m very happy for you to be in the place you are now. It sounds like a good place. Graham sounds like the most remarkable child with a happy happy heart. Thank you Dana for another wonderful slice of life.

    Comment by redmenace — November 5, 2009 @ 5:25 pm

  29. Your children are lucky and blessed to have such an open-hearted and open-minded mother. Thank you for sharing.

    Comment by callie — November 5, 2009 @ 6:00 pm

  30. Wow. I am new to your website (a link from Cakespy) and have just read both of your posts about Graham. I am sitting here at work all teary! I have a one-year old son who has been a little bit delayed and might have a congenital disorder (no one can tell us definitively yet), and it scares me to death. I’m a first time parent and have no clear way of navigating the possible outcome of this search for whether he is “normal”. Your post really gives me comfort and is a great model on how to think about our possible struggles (and joys!) ahead. Thank you for sharing your experience! Graham is beautiful and I’m so happy that you have each other in this life!

    Comment by Kelly — November 5, 2009 @ 6:46 pm

  31. Graham is a very lucky boy.He has you.
    And with your unconditional love, with your strength, with being there you are giving him your all.
    This has been the most beautiful post I have EVER read.
    You are so very right..Why can’t it be enough??

    Comment by Diala — November 5, 2009 @ 7:19 pm

  32. I just discovered your blog through Cakespy. I applaud you as a Mom, a woman and a remarkable individual. Your openness and sincere words are an inspiration. Your blog is a joy to read- I look forward to more!

    Comment by yael — November 5, 2009 @ 7:35 pm

  33. Dana,
    I truly believe nothing in our lives happen to us without some sort of reason or meaning. This meaning can be very elusive to our comprehension, or it can be blatantly and simplistically obvious. I as believe as humans, we want everything to be obvious and simple, not elusive. It is easier and not as bothersome for our lives to function the way we want them to. However, we must admit there is far more elusiveness than we care for and so we run from it or fail to see it.

    This could be why Graham was given to you as a unique and glorious gift. That is what he is, as you are well aware of. You had the simpler, pre-planned ideas of how things should be and had them changed to something more elusive along the way. This is no accident. Just as sharing your story on a blog in 2009 with everyone who “accidentally” discovered it is no accident either.

    I am very happy to see that you are a yogini. The spiritual teachings no doubt have helped you in your life. I also believe that having the yoga appear in your life is no accident either.
    Yoga is not just about having a yoga butt, as so many of my teachers have said a million times over. It is karma, emptiness, impermanence , suffering, joy and compassion and so much more.

    Your latest post has given so many of your cyber friends yet another reason to follow you even more, You are a living example of saying out loud that it is ok to have enough, enjoy what you have and love the life that you were given. A famous mantra that my Lama Marut continually says is ‘Om, I Have Enough. Ohm” You my dear Dana indeed do have enough and so does Graham. Keep setting your intention for Graham, because in reality, Spencer is there too and so is everyone and everything else that you love. Namaste.

    Comment by Vivian — November 5, 2009 @ 9:21 pm

  34. Tears in my eyes and a smile on my face. I feel the abundance in your life and feel the need to recognize that abundance in my life. Thank you so much Dana. For your honesty and the many gifts your words give me and all your readers.

    Comment by Ann — November 5, 2009 @ 9:30 pm

  35. I have been receiving your posts for about 6 months now. I discovered you through your wonderful friend Jen and have to say you have truly encouraged me to cook more with the veggies, less with the meat. Everything you offer is amazing and with that I think it’s simply beautiful and touching that you have also opened your heart regarding your adorable son Graham. No dry eyes here. It’s a gift for you to share the clarity you’ve had with us, thank you. Yoga and good food…

    Comment by Bethany — November 5, 2009 @ 10:31 pm

  36. I only have two words for you- THANK YOU! You remind us all to take a breathe and appreciate what we have

    Comment by keren brown — November 7, 2009 @ 1:37 am

  37. You care and share so much – not just with Graham and your family. Many of us visiting your site are helped and inspired. Thank you.

    Comment by maureen — November 7, 2009 @ 9:53 am

  38. Beautifully put, Dana. Those pictures of Graham are so wonderful. Thank you for sharing with us. It is a reminder to appreciate what we do have every day.

    Comment by Mara — November 7, 2009 @ 5:10 pm

  39. Somehow I must have missed that 1st post about Graham, so I love this chance in getting to know you and your family a bit more. Your realization that you are there for your children to be an advocate and be strong for them is right on. You are both very lucky to have each other indeed.

    Comment by kickpleat — November 7, 2009 @ 9:47 pm

  40. [...] she has a beautiful post about her son Graham.  Since I’ve been to Holland too (check out her post to see what I mean), I took special notice of her blog.  When she tweeted:  Just made this [...]

    Pingback by chocolate pecan toffee « foodie suz — November 9, 2009 @ 2:33 am

  41. Beautiful post Dana. I love that last photo of Graham!

    Comment by Ashley — November 9, 2009 @ 5:35 am

  42. Dana,

    I have tears streaming down my face. You are such an inspiration and your writing is a pure treat such poignancy and honesty and insight. Graham is your teacher…he will always remind you and all of us that just our presence, our smiles and our love IS ENOUGH.

    love to you always. Thanks for sharing. xo Jen

    Comment by Jen — November 9, 2009 @ 9:19 pm

  43. Dana. This is a beautiful piece of your heart. I love your family and am honored to spend just a tad piece of time in your boy’s worlds. See you on Friday.

    Comment by Catherine G. — November 10, 2009 @ 11:57 pm

  44. Thank you for sharing a piece of yourself. It shows me that you never really know what a person is going through. I always see your beautiful food and photography and assume that its all roses. Continue to be strong and I wish you, Graham, and family only the best.

    Comment by 24carrot — November 12, 2009 @ 2:06 am

  45. Today was my first visit to your post and the first thing I read was about Graham. I understand the heartache, tension and struggle of navigating to the correct resources for a special needs child. My son also has a speech delay as well as some motor delays and sensory issues. We have spend the last year in intense therapy hoping to be able to put him in a “regular” preschool this fall. We have cut back some on the therapy this fall and just yesterday I had one of those “isn’t this enough moments” as my son and I spend the first day with nothing but play on the agenda in months. We too didn’t talk much but it was so wonderful to just “be” with my beautiful little boy. I hope you continue to find those quiet (or noisy!) moments with your little ones too. Best of wishes to you and your whole family.

    Comment by Kate — November 13, 2009 @ 12:15 am

  46. amazing post! thank you!

    Comment by jenn king — November 13, 2009 @ 5:07 am

  47. Beautiful post. What you said at the end is something I’ll take with me. I’m the sister of a special needs child. He’ll be 18 in March (the doctor’s predicted he wouldn’t live to see his first birthday).

    My mother is is advocate. She fights for him and tells the doctors “I know my son and I know what he needs.” The funny thing is that she’s made plenty of doctors angry because she’s been right.

    My brother, Duke, is special. He laughs and he loves. He’s not here because of some weird blip in the universe. He’s here because a family needed him in their lives. I can’t remember life before him, and I’d rather not because he’s such a blessing to my life and our family.

    Thank you.

    Comment by Dfortner03 — November 14, 2009 @ 12:34 am

  48. I adore your blog and usually stop by to see what you have going on in the kitchen, so I must confess that I was moved to tears when I read your post about Graham. You shared so much and so deeply about your journey…..only a very strong and peaceful person could do that. Graham is lucky to have you in his corner and his presence in your life is so obvious in your words. I wish you all the best.

    Comment by keri — November 18, 2009 @ 3:05 am

  49. Dana, I have just started reading your wonderful blog and today happened upon this post while searching for your delightful Tomato Leek Soup recipe. I found I was crying as I read your post and heard my own hopes and sadnesses for my little girl. My daughter Julia also has developmental delays, as well as hearing loss. She attended Boyer until she was three as well, and now goes to Listen and Talk, an incredible preschool for kids with hearing loss. She also attended Greenwood Elementary’s developmental preschool last year as well. The speech therapists, family activists, teachers, and even doctors that have walked with us through these past four years have changed our whole families lives. I am so very grateful for them.

    We too have cried, wondered, shouted at God, and at times denied what we knew to be true over the years, especially that first year. It can be a hard road. Especially as you wonder what life will look like for our precious little one when they are in middle school, high school, even grade school. But even now I can hear her and her little brother giggling and shouting in her room, and my heart is full.

    Thank you for sharing your journey. I am so thankful we do not walk it alone.

    Comment by Heather — December 28, 2009 @ 8:57 pm



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