Sunday, August 23, 2015

in her blue eyes

"She's a beautiful baby!"  I don't go out often with Eleni, but when I do I often hear that phrase.  There's never been a point when a person couldn't tell just by looking when she's awake that there is something wrong with my baby.  They look a little longer, pause, wonder and say the only nice thing they can say, "She's a beautiful baby."

It's her eyes that give her away.  

She has beautiful blue eyes.  Miracle eyes.  Eyes I always wished upon a star for my child, more than half knowing it could not be.  I have brown eyes.  Well, brownish-green now that I'm grown up.  We all had dark brown eyes as kids, as does my dad, all my nephews, nieces and my first two children too.  When I married Brandon they showed a slideshow of our growing up and I reveled at his shining blond hair and clear blue eyes.  My grandmother's eyes were blue.  There was a chance, after all.

When Eleni came into the world so tragically, she did not show us her eyes.  We didn't know their color until she opened them a week later.  And there they were, a dark steel blue, like Aria's when she was born.  Like Daddy's.

in her blue eyes

Everyone assumed they would turn, as Aria's did, around 4 or 5 months, but I wondered.  I wondered because she had a sprinkling of blond hairs.  I wondered because it would be just so wrong for God to give me a blue eyed baby... like this.

I had been wishing for the wrong miracle, but now I know.  I know what a mother should wish for.

I have never been one of those women who just wishes for a healthy baby.  Oh, no.  I wanted a GIRL.  And quietly, absurdly, I wanted a girl with blue eyes.  I kept wanting that during months of trying to conceive, as we questioned whether surgery had made conception even possible, even after miscarriages  - still wanting a girl.

After Eleni was born, in those early days and weeks going home every night without our baby, my husband and I would let the words and the tears come after Aria and Liam went to bed.  I would sob, "I don't get to have a baby.  She's not what I wanted."  And then from the depths of my soul, "She's exactly what I wanted... but horribly, horribly injured.  And it's not her fault.  She's still the baby I wanted."

Eleni is six months old.  Her eyes haven't changed one bit.  If anything the centers are just a fraction clearer and paler than before.  I would give back anything, anything to make her whole again.  I would trade blue eyes in an instant.  But that's not the way it works.  There is no bargaining.

in her blue eyes

Today, in her blue eyes, I still see a pang of sorrow.  Hers and mine.  I also see the beauty that others see.  And the injury too, her sightless disorientation.  It's all there.

She's a beautiful baby.  Yes, she is.

56 comments:

  1. Good post, good picture. You are playing a poor hand well....and she does have beautiful eyes. She is allowed that.

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  2. I wonder when I read these posts if I would have your strength. To feel and be honest about the emotions that are only natural and continue to find the light. I've said countless times that Eleni is lucky to have you, but I also am so lucky to know you. You show me what it means to be a strong woman. In this sense, strong is not stoic, it is honest. It is strength that perseveres. You are amazing, and she is so beautiful.

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    1. Thank you, Megan. Your definition of strength rings true. I do feel stronger in these moments when I share and understand precisely how I feel.

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  3. Thank you for sharing your honest feelings. Of course you wanted a 'perfect' baby. We all do, but babies are flawed in so many ways. Some flaws don't show themselves for months or years. I hope your honesty helps others deal with their guilt about feeling selfish. It is a natural feeling, but usually kept hidden, where it can fester.
    How are Aria and Liam doing? Are you still trying to home school them? Remember, you are only human and doing your best is all you can do. Priorities change when the going gets tough.

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    1. Aria and Liam are doing their best, surviving and struggling and being so willing to help. We are all both ok and not ok. It's always a mixed bag. Yes, we are homeschooling, because that's what we all want.. for now. It is incredibly hard to keep it up, but we have started, which counts for a lot.

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  4. She is beautiful. I don't know if you've ever read the essay Welcome to Holland by Emily Perl Kingsley but this post reminded me of it. Keep talking and processing like this. I've worked for 20 years with students who started out like Eleni. It's important to take the time to mourn the loss of your "normal" child. She's a special girl and you're a good mother. You'll have adventures but it'll be worth it.
    Don't forget to take care of yourself too.

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    1. Thank you for telling me the name of this story. I have told it a million times but couldn't remember its genesis. I've told it to parents who have kids (grown kids) with mental health problems - in hospitals for schizophrenic type symptoms, or who have disappointed them with bad choices like drugs or well... I'm sure you know the drill. "She's not who she was." "He's not himself." Yes, they are themselves. Their flawed beautiful selves - as are we. I work within a reserve in northern Canada now and I need to be reminded of this more and more - so again - thank you big time.

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  5. Beautiful woman, and beautiful baby. I'm aching with you today. xx

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  6. God bless you and Eleni. I think of you every day.

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  7. Eleni IS a beautiful baby with dazzling blue eyes! Everyone hopes for a "normal" child, unfortunately you have a new normal. Your strength is astounding - I am in awe! Please keep sharing!

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  8. Almost 18 years ago our fifth child was born with Spina Bifida and I can remember experiencing many of these same emotions. Together my husband and I wondered how we would continue homeschooling our oldest two children and meet everyone's needs while caring for our daughter. Friends encouraged me to journal as a way of articulating my new feelings and as a way of helping other families going through similar situations. I am sorry to say I did not make the time to write down my thoughts but I am so very thankful you are! You are sharing your insights with so many and along the way growing as Eleni's mother and educating so many people about what it is like raising a child with special needs. Thank you for having the courage to share your journey with all of us! Our daughter uses a wheelchair for mobility but her disability certainly does not define who she is as a person. She was just elected Captain of her swim team and is applying to college. She inspires others to appreciate every day! My prayer is that you will be similarly blessed by your daughter.

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  9. Oh Rachel. This is another of those posts where I feel compelled to respond but all words seem inadequate. What I really, instinctively want to do is hop over the ocean in an instant and give you a huge hug. Only that could express how your writing makes me feel. A hug of thanks, of comfort, of reassurance, of sadness, of optimism. I hope you know so many of your readers are surrounding you in a virtual hug. xxx

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  10. Oh Rachel. This is another of those posts where I feel compelled to respond but all words seem inadequate. What I really, instinctively want to do is hop over the ocean in an instant and give you a huge hug. Only that could express how your writing makes me feel. A hug of thanks, of comfort, of reassurance, of sadness, of optimism. I hope you know so many of your readers are surrounding you in a virtual hug. xxx

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  11. You write so beautifully. Thank you for sharing your truth and your bravery. I think of your family often xxx

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  12. Eleni is a beautiful baby no matter if everything is 'alright' with her or not. And you did wish for the right things because you didn't know probably didn't even consider that something is not right. And you wished for a blue eyed girl and now you have a blue eyed girl and she is beautiful and a miracle and in her own way just perfect just that her way is not the normal one. And I think she has one of the best mums in the world!

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  13. Beautiful post, Rachel. Eleni certainly is beautiful and so lucky to have such a strong family around her. I think what you are feeling is very normal, although that doesn't make it any easier. Love to you all x x

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  14. Only you know your heartache because only you wear your shoes, but my hope for you is that by sharing your story it eases your heart as much as it opens ours.
    And yes! Eleni is a beautiful baby because she is a reflection of you x

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  15. I am with Kate Sparrow. I too take such joy and pleasure from your posts, familiy and creativity. I'm sad that you and your family are being tested in this way. You are often in my thoughts and prayers. I too wish I could cross the ocean, give you a big hug, make one of my truly decadent chocolate cakes, take Eleni out to give you a bit of time to create. Take care of yourself.

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  16. Hey Rach thank goodness for small wonders xx Have you ever thought of getting your words published? I think you have something special Clare xxx

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  17. I think someone said above that they ache for you today. I feel that ache and also your strength as you continue to care for your family and create. My hope for you is joy and peace for your family as you travel this unknown road.

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  18. Rachel your words are so honest. It takes a special person to be able to share their heart with so many of us "strangers"... friends.. Thank you for sharing and know that I am praying for your family. Everytime I see one of the coasters you made I say a little prayer for your family.

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  19. Hugs to you, Rachel. You and your family are in my prayers!

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  20. She IS a beautiful baby...and obviously loved and cherished regardless of her circumstances.

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  21. Sometimes we don't think to wish for those things we assume will happen, such as a healthy and normal baby. You are so honest in your feelings and I have to believe it only makes you stronger. She IS a beautiful baby and she is so fortunate to have your love and support. We, your followers, are fortunate to have you as a standard bearer of courage, love, and hope.

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  22. I hope you don't feel any guilt when you say you wished for the "wrong" miracle. If you accept that there is no bargaining now, accept that there was no pre-birth bargaining either. You had had two healthy babies and probably took it as a given that Eleni would be healthy, too. So you moved onto the next wish on your list. Who wouldn't?

    We all make wishes and some are granted while others are denied. Who knows how that works? Be kind to yourself and accept that you are doing an amazing job (and do your best not to look in the rear-view mirror).

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  23. My older two children both have mild cerebral palsy. I say children though they are now 39 & 40 they will always be children in many ways. In my case, it was a slow realization. They were slow to talk, slow to learn to crawl or walk. It was over years of doctors visits that we had to accept that they wouldn't ever reach their full potential. Especially after my son to have a daughter 18 months later that seemed perfect in every way only to notice the same issues. I can't even imagine how much of a blow it must have been to give birth and be told what you were told. We are here for you and anytime you need to "talk" feel free. Hearing you speak of your struggles and pain strikes a chord within me as it does so many apparently. Hugs from afar because that's the best I can offer.

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  24. I understand. When I was pregnant at 42 (after 15 years of infertility) I prayed feverently to be spared the kinds of physical and mental handicaps that are more common in late pregnancies. When I lost the baby, I wondered if my selfish prayers had somehow stopped that tiny heart I had seen beating. Eventually, I stopped beating myself up for it and realized that my wishes are not so powerful as all that. Eleni is a beautiful baby and you are a wonderful and loving mom. Bless you. Beth @ Words & Stitches.

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  25. Rachel, you are an amazing writer (and mom and sewer!). This really deserves to be published somewhere. So heartfelt and beautifully written. I am glad you were able to enjoy your pregnancy rather than spend it worrying. I am so sorry you are going through this. You and Eleni. Sending you love and hugs.

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  26. Hello Rachel,

    yes eleni is a very beautiful baby. She was from the first picture you showed here. Until today I always looked on the pictures and feel a deep pain in my heart, because she looked always like one of these Babydolls for grown ups, so thight and far away. But today, i looked on the picture and my first thought was what adoreable blue eyes she has that matches perfect with the fabric. After that I realized the difference and I cant say how much I am happy for you. We were told that during the last days of my pragnancy with our little one, he was not supplied enough. Because of this during the first weeks we always looked on our very small baby and feared. During the months he lost his thightness thanks to visceral osteopathy and is a very smart little boy now. I cant express how much I feel with your sorrows and your strong will to support her as much as you can. Hugs and kisses for you and your family. Its long way to go but I am sure you will do it. Best wishes, anja

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  27. My sister is raising her special needs grandson, and she asked that I make him a "Mighty Me" similar to one she saw on the FaceBook page for "A Very Special Needs Resource." While looking at their FaceBook page, I had noticed a quote that to me speaks volumes: “Look into the eyes of a Child with Special Needs and you will hear their voice. Hold their hand and you will feel their heart.” Many thoughts and prayers for Eleni, you, and your family.

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  28. I am so grateful that Eleni has a family who loves her so dearly. You are so devoted to finding the best care for her. She was definitely sent to the best family. It is a tender mercy beautiful Eleni wasn't sent to a single teenage mother whose own mother is still a single mother. You have the faith and prayers to get you through all this pain and sorrow. You will gain so much more wisdom as you continue your way on this path. God never gives us more than we can handle. No one ever wants problems, but when we have problems is when we learn the most and grow the most. Just continue loving and writing and searching. We all love you and pray for you and Eleni and your family.

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  29. Those beautiful eyes are the window to her perfect little spirit inside! I honor you and the journey you face. God has given you a little blessing that will refine you and help you to grow in unimaginable ways.And, He will walk beside you all the way. Thank you for sharing your most personal feelings with all of us. It helps us to grow with you!

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  30. If your eyes are the windows to your soul, Eleni has a beautiful soul. She is exactly what you wished for, she hasn't had a chance to show you yet. Breathe and enjoy her mini advances... to her they are like walking on the moon.

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  31. I'm always so impressed about your strength and so happy that you are sharing your feelings with us. Thank you!
    Eleni is such a beautiful baby - and why she shouldn't? She is so cute! Her eyes are really beautiful. I love thos blue. I hope some day I will have a daughter, too, with blue eyes hopefully. I lost our child in May and it is still hard sometimes to talk or even think about it. But God and my Grandmother will take care of her or him. I am sure! And I am sure, I will have a baby - some day.
    Greetings and thanks for sharing!
    Rike

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  32. I've always loved your blog so much, I loved your voice and your tone and your honesty. Now, though, you've taken it to a whole new level as you speak of your struggles settling into your new reality. Every time you write a post about Eleni, it gets me right in the heart. Your posts about her are beautiful because they are real. On top of that, they are also beautifully written.

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  33. Love is beautiful. That's what I see.
    But love is also painful. I see that too.
    Sending more love across the miles to you both.

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  34. I don't know if it eases your pain to read over and over again how beautifully you write, how touching your words are, how they stir such strong feelings and emotions, but, they do. They just do. Hopefully knowing how many people you inspire will give you cause to pause and smile and have your burden lightened, if just for a moment. Thank you for your words. Your are an amazing, strong, honest, gifted woman... so capable, so motivated, so ambitious, so human. I don't know if reading these things helps you in anyway, but after reading a post like todays post, I just feel the need to write them, to reach out to you with love and compassion. I will pray for you and your precious daughter.

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  35. Eleni is beautiful. This is a lovely pic of you two.
    I have done quite a lot of sobbing for all of you as well.
    Well, I am not one of those people who say "everything happens for a reason" because that is such a corny false statement. I do believe when good things or bad things happen, we have choices -- most of the time, how to respond. I do admire your courage. I admire your eagerness to search for the best treatments and therapies for Eleni so quickly. Life is sharing and learning.
    Things happen in families, events that change the dynamics, I can really imagine a very positive future for all of you.
    I always get your posts in my email a day later [like right now, Monday the 24th 7:00pm] .... so it is interesting to read the above^^ very heartening and some very knowledgeable words in response to yours.
    All of you are in my prayers daily.
    Love always ♥️

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  36. Rachel I love reading your blog. I admire your honesty about Eleni and know that for most of us we wouldn't have the courage to share like you do. We are learning and growing with you both. And yes she is a beautiful baby - I love that little chubby face of hers. The photo on the fundraiser page is perfect - I just wish I could scoop her up and give her hugs and kisses. Please keep sharing. Love and hugs.

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  37. Beauty is love, and love is beautiful - you guys have it all in spades - all of you. I hope, dear Rachel, that not only will you put all your beautfiul, honest and courageous words into a book, but I hope you include the wonderful, kind, loving words that your followers send you. I think this would be so helpful for anyone going thru tough times. You speak for many and I admire you beyond all measure. Love Carole-Jayne, Nova Scotia, Canada.

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  38. Thank you for your honest words. They are moving, humbling, refreshing, though hard to read for the tears in my eyes. And Eleni IS beautiful, she really really is. Blessings to each one of your precious family, every day and every hour.

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  39. Oh precious I love you and your beautiful honest heart. Yes life is challenging b Challenging in fact but in little moments you find a sliver of joy and happiness. I thank God every time every time I read your words that you know God because how terrible would it be without him and knowing that he has it all in hand. I know how I have been blessed by your sewing tutorials but how many will be blessed my friend by your sharing Eleni with us. Hugs to you

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  40. Dear Rachel
    I don't know you, but I love your blog and am so moved when you share about your beautiful daughter. Reading your post, I wanted to echo what Suzana said. I hope you do not blame yourself in any way. You had no more to do with her condition than the color of those beautiful blue eyes. There is so much I don't understand about this life, but I know He who promised is faithful. You will be in my prayers as will Eleni and the rest of your family.

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  41. As usual, you write so beautifully, so poignantly. I can't make it easier for you other than saying: I understand where you are coming from and that you and your family are in my thoughts and prayers. Di x

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  42. I am left speechless by your posts. The poem Elizabeth mentioned is the one I read time and time again and give copies to when people face the journey you, your beautiful darling baby girl and your family are now on. It is never going to be the journey maybe you had wished for but your little one is a fighter and that shows in the beautiful pictures you take of her.maria xx

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  43. Sending you all the love and hugs I can. I really do enjoy hearing how life is in your beautiful family even if it does bring me to tears.
    The lord knows your strength and we can all see that this is testing you but your faith is amazing and inspiring.

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  44. You are so generous to share this with all of us. It really makes a difference - I will remember to be extra patient with my clients (kids in trouble) today. I will keep those blue eyes in my heart to remind me that we don't know what we're going to find out as every dawn breaks. Love to you and your precious family.

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  45. Thank you for sharing yourself and your children with us. Your story is beautiful just as Eleni is.

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  46. Oh your words make me cry, Rachel. But gosh I admire you for writing them. My Mum had a baby who was born with a lot of problems, he only lived two months. She never talks about it, she never visited his grave with the rest of us. More than thirty years later it's this thing that clearly affects her (she sees impending disaster when watching her grandchildren play), and she will not acknowledge it to anyone. I admire you so much for sharing honestly what you're going through, you are such a brave example for your children. I hope it helps you all to live a happier life.

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  47. Honest, beautiful and heartbreaking... we ache for you too xx

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  48. all I can think to say is, God doesn't make mistakes. I heard that somewhere along the way, and I think it is true. We're not meant to know why He allows things to happen in this imperfect world, all we can do is trust Him and lean on Him. and here's my virtual hug ox

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  49. Rachel, I love both of these photos of Eleni, most especially the one of the two of you because your love for her radiates from you as you hold her.

    To echo Jodi's comment above, all we can do is trust in God because while we don't know *why* He allowed Eleni's injury, we can trust in His infinite mercy and love for your family.

    Eleni was entrusted to you to help you grow in grace, to expand your capacity to love as He loves, and to give you the great privilege of caring for a little saint. All of your anguish, all your heartbreak is a part of this, for even the greatest love of all (Christ's love for humanity) came with tremendous suffering (His passion and death on the cross). Just as Christ offered his suffering to God, so can we.

    You are an amazing mother. Thank you for sharing your journey with the world. And thanks for listening to my Catholic perspective. Let me know if you'd ever be interested in learning about Eucharistic Adoration - you and Eleni surely would benefit from being in the presence of the Lord, hidden in the Blessed Sacrament. xoxo

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  50. She IS a beautiful baby. And you are a beautiful mama.

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  51. Probably one of the hardest things to figure out is how to most effectively advocate for Eleni without becoming a huge ball of anxiety and frustration. I worked as an oncology nurse at Children's in Philadelphia for 20 years - it's absolutely unacceptable that you waited that long for CPAP. It's critical that you find a general pediatrician/nurse practitioner that can act to coordinate/synthesize info from all the different specialists/therapists you are using. Children like Eleni take a lot of time and many physicians try not to get involved because insurance/administrators are demanding that they see x number of patients an hour. Mark Magnusson MD is a pediatrician at CHOP that is known for taking good care of complicated patients. He may know of someone in your area that practices the same way - if you haven't found this yet. I have seen many patients get lost in the system because parents are afraid to make waves. That means writing letters, calling congressmen, CEO's etc. it's ok for you to tell your doctor/home care co/etc that the service is unacceptable and you will not budge from the office until something is done. Look the person directly in the eyes and assert yourself in a steady direct voice. They will soon figure out that you mean business and that you are not to be fooled around with. In a medical system that is chronically overwhelmed, where people are overworked - it's the squeaky wheel that gets noticed. OK - I'm done with my rant:). You are an intelligent woman who cares deeply for human beings. I'm really proud of all you have accomplished ! My email is lindafdoyle@verizon.net - your welcome here if you ever come to Philadelphia.

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