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  1. When someone writes an piece of writing he/she retains
    the thought of a user in his/her brain that how a user can understand
    it. So that’s why this post is perfect. Thanks!

  4. As your older than your father uncle I would add that we two boys drove vast distances with our parents without air conditioning. This was the era of the front window vent that when deployed blew a firm stream of hot air directly on passengers and served as an exit option for cigarettes that did not require rolling down the window.

    There was no FM radio, only hard- to- tune- in local AM stations featuring sermons, on-air yard sales and country music.But at night, it was magical to tune in the AM dial and pick up WABC in New York City, WLS in Chicago, the official Grand Ole Opry broadcast from Nashville and WOWO in Fort Wayne. Try it with your kids…it still works the magic later at night when bigger city stations are allowed by the FCC to take advantage of atmoshperic conditions to transmit full strength across the country..

    Motels were mostly roadside cabins with pay black and white TV within walking distance of a greasy spoon. Holiday Inns were new and rare in the South but driving all night to lodge in a city hotel was a treat too: room service, room telephones, swimming pool, bell men and a restaurant.

    Your father and I misunderstood when a parent would say we were stopping to stretch our legs. We thought we were to “scratch” our legs, which they allowed us to believe for several years. The car would stop and out we went furiously scratching our legs.

    Your cousins B and Dan were taught to play Botticelli, a car game that kills highway miles much faster than 20 Questions…Ask your dad.

    .

  5. Such a wonderful tribute to your Dad! He will be missed greatly by EVERYONE that knew him! Your Dad definitely inspired me. I always enjoyed our chats and appreciated how wonderful he was with Izzy!

  6. So beautiful, Cameron! Love reading your posts about your dad… great way to remember and carry on his dynamic character. xo

  7. I know a lot about the wonderful family of which you write and their trips to Charlottesville to see the Wahoos play. Your Dad will be there on Saturday and you will feel his arm around your shoulder when you sing the “Good Ol’ Song”. Love, Mike

  9. I’m about as crazy for college football as you are Cameron. I love the tactics, the athletes, watching the polls, the passion of the kids playing, the rivalries, pride for your alma mater, massive upsets, the nutso Under Armor / Nike Combat uniforms (favorites so far: Maryland’s coat of arms helmets, Oregon’s neon / chrome, Army’s camo combat and Navy’s summer whites they’re wearing this weekend) and perhaps the best thing about college football: every game counts. Every single game played means the world to the players, coaches and fans. You cannot say that for any other sport. You can lose 50 straight games in the majors and still win the Pennant. 10 losses in a row in the NHL or NBA is not the end of the world. You lose a game in the college football season and you’re out of the race. Is it just me or does college football have dibs on some of the craziest games in all of sports? I know you’ve seen 1982’s The Play: https://www.youtube.com/watch?v=5bhbuEDYHho and last year’s mind-blowing Auburn Alabama game. I was lucky enough to attend the 1990 Cal Stanford game was about as insane: https://www.youtube.com/watch?v=oGkILWH0q4Q.

    I will say I think the game is about to change. The NCAA is not going to be able to sustain its grip on the obscene cash flow generated by football and basketball. Whatever the outcome, I do hope it doesn’t affect the quality, excitement and relative parity of the game. I’d hate for this revolution to end up creating super-elite programs and ugly duckling programs who cannot hope to attract decent players.

    Lastly, I wish I had a father whose passion for any team could have taught me the lessons and engendered the camaraderie your dad was able to generate. I wish I had known him. His intellect, kindness and loyalty would have made me be a better dad. I hope we can raise a bloody mary in his honor on Saturday.

  10. I couldn’t agree with this more. With the increasing ability of the media to saturate us with stories it has become so hard to preserve our children’s innocence. 9/11, Katrina, Sandy Hook, Casey Anthony. I’ve struggled for years to find the answer to how much to tell my kids at various ages.

  11. Cameron, this is beautiful. I have heard motivational speakers talk about the “hard” stuff as an opportunity – because we grow and learn so much during those times. They say “embrace the hard”. While I get that intellectually, it often seems easier to embrace the hard in the review mirror rather than in the moment. At any rate, I love your authenticity and honesty. Awesome post. – Lizzie

  13. At some point you need to put all your beautifully written pieces in a book. So many people need the inspiration that comes from these writings!

  14. Wow. Beautifully written. You are ” Lucky” to have had such a tight relationship with your Dad. Thanks for sharing.
    Maggie

  15. I look forward to your words of wisdom and the many stories you write about. Thank you for sharing your beautiful family and Father with us. Debbie

  17. Cameron —

    I grew up with Billy and Kennon, BUT in many ways I feel as though I am growing up with you as through your words I am reminded of what is important, how to find my joy, my passion….

    You have completed my life long friends in many ways and now you are doing the same for me. I hope to meet you one day in person and give you a big hug around the neck!!

  18. Dear Lucky…
    You have such a gift with words! My husband and I still argue about who “started” the conversation in history class in 1964. You are so right about the twists and turns a marriage takes. Just turn together! Maggie

  19. So glad my sister, Page’s mom, shared your blog with me. I too lost someone, my husband and father of my children, on May 29. Look forward to each new post because I can always connect to your words. Thank you.

  21. I also went to church as since my mother had passed this year. She was on the roll call. We had a candle lit for each person. It was very beautiful. But I stood there in the pew with two friends who met me today, I realized I had never been in our church before without a parent. But I was glad I went as well!

  23. As a mother of two “boys” 30 and 32. It is a wonderful thing to see them fall in love, get married and have that first child. I would not trade raising boys for all the girls out there! And I got so lucky that I love both their wives and the first grandbaby was “Yep, you guessed it! A GIRL!!! AMAZING!!

  24. Hi Cameron – look forward to meeting you tomorrow evening! Just shared this with our daughter, Ambler. We both agreed – this should be your toast. Let the fun begin! Torrey Shuford (Tayloe’s aunt)

  26. You said it all in this writing. Your Dad is so proud of the woman you have become and of course along with your Mom. Just speak from the heart.

  28. Yes, agree with the others. Cannot imagine a better toast than what you have written. Mission accomplished. Maggie

  29. That’s it. No need to keep wondering what to say. This is beautifully written & the love & respect you have for your brother is evident.

  30. Hi Cameron – Don’t see how you have the time to do this! What a wonderful wedding weekend – perfection from start to finish. SO HAPPY for Tayloe and Peter. Loved meeting the Poynter family and your cute mother. Your boys are precious – ALL of them! Hope to see you soon – Torrey

  31. I love every single blog you have ever written even though at least half of them bring me to tears. But this one, more so than any other one I have read, is your most powerful ever. I stand in complete and utter awe to the power of your words.

  35. Thank you for these and many other insightful comments you share. Julie often shares with me. (For context, she and I are Jamie’s parents. He and Emily and the boys were here for Thanksgiving.) Your words today exactly captured our feelings. A day like this reminds us of what we try to keep in mind every day. Our lives are blessed, for which we every day should celebrate with thanksgiving.

    Tom Estes

  36. Hi Cameron – always love your beautifully written, poignant posts and all that you tackle and embrace. Wishing you all a wonderful Christmas season and hope to see you soon! Torrey

  37. Thank you ! This is the first Christmas without my mother or my father. I’ve really struggled to get the joy going. Thank you for sharing this with us.

    1. Oh Susan I totally understand the struggle to find the joy. Sometimes it is easier than others. I look it at in fractional terms – not every moment will be a joyful one and that’s okay. But I allow myself to enjoy the ones that are. Wishing you and your family a wonderful Christmas…

  38. You are remarkable and your thoughts touch my heart. I find myself nodding in agreement to so many of your words. I cannot imagine your loss. Your dad sounds like an incredible man.

    My little boy died when he was 1 year 11 days old. Although he did not live long he impacted so many things in my life. I don’t find things like gift tags with his handwriting, but I do come across things from time to time, when I’m sorting the the never ending piles ?, that bring back a memory. I cherish those moments.

    Thank you for sharing your story.

    Merry Christmas ?

    Michelle.

    Sent from my iPhone

    >

    1. Michelle,
      As a mother, I cannot imagine such a heartbreaking loss. I know that despite the short time you had with him, he touched not only your life but the lives of so many others. And I am glad you have those moments when he comes back to visit you through your memories. Those moments are worth more than the price of gold. Hugs to you and your family.
      xoxo
      Cameron

  40. I so LOVE being the mom of boys! Now that they are 30 and 32, it’s amazing to me that I would have ever wanted a girl. What would I have done with a girl??? Now I have a granddaughter and trying to figure out the whole girl thing. But I would not have missed being Mom of two boys for anything! ENJOY!!

  46. Jack’s teacher here…I agree there is nothing more important than family (and UVA when they’re on a roll.) Lucky Jack!

  47. Beautifully written. I am so glad that you found J. K. Rowling’s powerful sentence. Thank you so much for a wonderful essay.

  48. Cameron, I just wanted to let you know how much I enjoy reading your blog — you are a phenomenal writer. I wish I could have met your dad- he sounds like a very special man. And your boys are very lucky to have you as a mom. Please keep writing- I look forward to seeing a new post in my inbox. Best, Georgia (Wainger) Sussman

  49. Yes! So many books I read about grief dealt with regrets or lost chances or “things left unsaid” and I just couldn’t relate. It made me grieve for the people profiled who clearly hadn’t had the gift of a love articulated & demonstrated daily, consistently, constantly. It leaves me so very very grateful.

  50. You have a wonderful way of making your family’s loss ring true with the reader. Your loss becomes everyone’s loss. Your son’s grief becomes a universal grief of all young children who lose their beloved grandfather prematurely. Thank you for your insightful and lovingly phrased posts and blessings on you and your family.

  51. I say I am raising my four sons to be good husbands, partners, people too! You say it so very eloquently and beautifully. I am sorry for your loss & ache but appreciate the way you weave into your writing so truthfully. Losing a parent is truly an ache that never diminishes. Sometimes it just hits so hard. Remembering them and their legacy is a way to feel them in your heart. Peace as you remember and share!

  53. I believe Jack shares your wonderful ability to express your thoughts! Thank you for sharing with us!

  54. Okay…..now I understand; I was not aware of the 34 years. Please accept my sincere apology for my Facebook comment submitted earlier this week. I was simply…well, the reason doesn’t matter. Again, I am sorry for my impertinent comment.

  55. As my dad aged I use to look at him hard, and for a long time, the way his hair fell across the collar of his shirt, the way he held his coffee cup, the way he crossed his leg and swung his foot when he had heavy thoughts on his mind. I knew I was going to lose him one day, because we lose everyone we love, and I wanted to have an image to cling to. Now when I conjure him up it is not the image that comes but the scent of him, even though there is no scent of him left.

  56. We all experienced so much pride in this team, winning because they were unselfish and sharing that feeling with us. Thanks for sharing. Wahoowa.

  58. I have been a wahoo since the day I was born in University Hospital in 1966. I, too, have loved the Hoos, celebrating the victories and lamenting the inevitably painful defeats for all that I can remember of my 48 years on this Earth. But that’s not the reason I am commenting, here. Or, at least not the only reason. I just wanted to say that you write beautifully. With both passion and focus. I have not been as moved by someone’s writing as yours has moved me. I only recently found your blog via a link from a message board, but I am glad I did. My day is better one for having read your essays. Thank you, and Bless you.

    R Taylor (CLAS ’84)

  59. A little over a year ago, my wife suffered a miscarriage. We’ve wanted a child for quite some time and joy of discovering we were pregnant was unmatched. Something came close though…The Virginia Men’s Basketball Team. We began to day dream about bringing our child to games and the fun logisitics of how it would all work.

    When my wife discovered we had lost the baby we both struggled with the news. Virginia basketball served as our therapy. We drove to Greensboro for the ACC tournament championship and witnessed a different type of miracle. As Justin ran over to hug Joe in the final seconds, the tears began to fall. Much like you, it was a moment of release. A release of incredible joy and incredible sadness.

    For anyone who says, “It’s just a game” they should read your blog. Please keep up the great work!

    1. What a terrible loss for you both. Hugs. I hope one day you will have a boatload of children to take to games. Being able to share that experience with my boys has been a powerful way for me to feel connected to my dad and I hope that they will look back on these experiences and feel the same way one day.

  60. Good one as always! After a year I am healing from losing my mother. I finally realized that I did believe in heaven and I would see her again. It was like turning a corner. I can tell you have reached that corner as well. Blessings!

  61. Wow, that’s amazing. Your guy sounds a lot like mine (he’s lost a lot, too, but in different ways, and sometimes he talks about it). Maybe sometime when things are a little less emotionally charged, you can let him know exactly what you said here (that it’s hard for big people, too). It’s important for kids to know that we do understand what they’re feeling, that they’re not alone.

    1. Absolutely Casey. If there’s one thing we do well in this family it’s talk 🙂 Jack is very sensitive so his usual focus is how other people are feeling. That’s why on this one night I wanted it to just be about him.

  63. Yep. I can identify with the pushing yourself too far and the invisible disease…I have Lupus but I try very hard to forget it (and then kick myself later after I’ve overdone it…). Sorry about your experience with the idiot on the bike. Next time, use mace. 🙂 (Okay, I’m kidding…sort of…)

    Reply

  65. Without a doubt Tony Bennett and the entire U.VA team are a #1 class act ! As proud as I’ve been to wear the blue and orange almost every day since moving from the Shenandoah Valley to Tar Heel country, I’ve been equally proud to be able to say “Mr. Bennett builds player character first and winning teams next.” Enough said except…is there anyone who wouldn’t be pleased to see him in charge of THE whole UNIVERSITY ! 

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  67. I have sensitive feet that blister easily, but I’m sure it’s nothing like yours. Anyway, I also favor soft shoes. If you haven’t, try the leather (not suede or fur models) shoes in Sam Edelman’s Felicia line. They are the best I have found!

    Reply

  69. Hi,
    I’m Janice. I found you on Jason Cushman’s Meet and Greet (Harsh Reality). I lost my dad too rather unexpectedly, and your story brought back memories for me.
    Nice to meet you.
    Janice

  71. Good one Cameron. Lafed out loud this morning. Thanks. Maggie
    (Katie Petchel’s mom)

  72. my mom died 2 years ago this month. I’m still surprised by those unexpected moments of grief. this week it came when I happened to pick up a toddler’s shirt that said, “Grandma thinks I’m fabulous” and recalled, again, that she didn’t have a chance to meet my two youngest. thank you for this post and the gentle reminder that we’re all still on the same journey.

  73. Your writings have lead me to realize there was so much to Ross that I did not know…..what a renanance man he was….CR

  74. What a gift you give us with your words! Hope you are well. And, thank you.

  77. I recently became a FTM and I stumbled upon your blog after reading an article in yahoo…I must say that I really like your blog posts and how it’s filled with such well-appreciated honesty, well-grounded wisdom and nostalgia.

  78. You made the right choice Cameron, your dad would approve. It does get easier to deal with in time, not necessarily better, just easier. Enjoy your weekend with your family, look forward.

  81. This is so hilarious. I obviously don’t have kids, but I can provide some commentary as an “in-betweener”, late 20-something. I spend a lot of time driving up and down 85/95/64 and I inevitably – at least twice per hour of driving time – see at least two Toyota Sienas playing Frozen or some such variety from that nifty suspended television (you know, the one that folds back up into the roof when finished). And I can see at least two kids nestled safely in their vehicle strait jackets/space contraptions, and dad is usually following the Garmin while Mom reads an iPad or dozes in the front seat. This is a stark contrast even to our trips even 15-20 years ago….I remember my parents driving the three of us plus Mamis from Norfolk to Wilmington for Bernie & Katie’s wedding. We spent the first three hours or so playing those games you mentioned. We were finally allowed to turn on the TV to watch the movie Good Burger on a 10-inch TV w/ VHS; the TV sat on the floor between the two front bucket seats. We had to wait at least three hours to turn this on so that the cigarette lighter could actually charge the TV. Or at least that’s what Mom told us. For what it’s worth, Mamis laughed the entire movie, and we had fun recounting some of the funnier moments once it was over.

  82. Thank you! You told my story and it’s all true. I’ve been looking for support and ideas on living with EB but feel ridiculous complaining when you see people inflicted with EB far more severe than mine. It would be great to hear solutions to our everyday dilimnas. I’m also curious how EB simplex is affected by menopause. So many women complain that their skin thins and I wonder if it will be worse with EB

    Reply

  85. Glad to see you back. Maybe this will spur me to quit posting 140 characters at a time and start blogging again. I lost my Dad in May and have been drifting in a fog too. Maybe we’ll see you at a game this Fall. Wahoowa!

    1. I’m so sorry John. The fog will eventually lift which is both a blessing and a curse. But grief is a funny thing. There comes a time when you don’t think about them every moment of every day but the hurt is more acute when you do. Not unlike our football team 🙂

  87. Enjoyed your blog…as usual…..Thanks for helping Flynny “surf” at the beach the other day. Katie Petchel’s Mom.

  88. Bravo! I look forward to reading more, Cameron. You’ve got a clear voice that rings true. I imagine your writing has had great therapeutic value for you and I know it has touched your readers. Thank you!

  89. Cameron,

    In the church we call that Holy Ground. Does not matter what happens there, it is the connection to the place. Next time take off your shoes in the grass. Hoping the rest of the season brings happy memories. Bill McClung

    Sent from my iPhone

    >

  93. Beautiful as always!! Thank you for making that choice over and over again. It I s the most important choice you will ever make! Happy dataversary.

  94. Thank you for telling your story of EB! I too have EB simplex and grew up in Northern VA!
    It’s such a tough disease to deal with, because just as you said people look at you like you are “normal” and don’t understand that almost everyday of your life you are in pain.
    I have persevered through many things with my EB including running and triathlons. I am embarking on my first 1/2 Ironman and I’m terrified! I keep reminding myself people have done greater things while dealing with even greater physical disabilities and I am determined to complete my goals!
    Thank you again:)

    Reply

  96. I under stand you so bad it hurts even trying to type this but when I saw what u have said it was like reading about myself no matter how old I get (31) it’s hard every year to find shoes soft enough if any of u out there has got and suggestions I would love to here from you with any tips or advice I am member of debra as well go to London every year would love to hear from people who are going though what I am. They also said it would get better with age but mine seems to be getting worst x hear is to finding a cure for this horrible skin condition xxx

    Reply

  99. Love your honesty, good times and bad….I can picture exactly what you are talking about. Great Lucky Pants story!!!
    Maggie b…Katie’s mom.

  101. This is one of the best descriptions I can imagine for my own experience of losing my father suddenly and traumatically. He was the ultimate optimist in my life and always inspired me to be the same. Losing him and a series of subsequent heart breaking losses have left me a much more guarded person. While that self-defense-first mentality grew around me like scar tissue I still long for that feeling of innocence and optimism that directed my life before that first horrible loss. Not everyone will understand how you could balance a deep personal loss to a college sporting event, but I know exactly what you mean. My dad was always the Wahoo who said “all we need to do is xyz and we win it. During the Wake game I found myself thinking along those same lines that we just needed Malcolm to play like he did in the buzzer winner at Pitt 2 years ago. That voice of optimism always sees a way no matter how unlikely. Thank you for sharing your heartbreak and experiences. I’d almost forgot that used to be me too.

    1. Thank you Kyle. Every year at the beginning of football season, my dad would say “this is the year we’re going to run the tables!” He usually said it with a knowing smile, but still there was always the hope. I hope you still continue to connect to your father and the memories with him every time you watch a game. Thanks for reading!

  102. You haven’t had an Orange Pants post in awhile. So glad you’re back! I find myself going back to your essays again and again. Thank you for your very polished and highly readable posts. You have made me better appreciate the power of 54 seconds.

  103. All my life I struggled with this . And along with it.. Weight gain . Thank you sonics for posting this article. It is true what you say about the” invisible disease ” mine was only recently diagnosed but I remember going through public school and failing physical education . Being called lazy when u are crying in pain. And the horrible comments when u are parked in a disabled stall and it ” appears” as if nothing is wrong with you . Thank you again for sharing your experience as it completely mirrors mine .

    Reply

    1. Thank you for reading Charlene! There is something about knowing we are not alone that makes it a little better. Hugs to you…

      Reply

  106. Thank you for sharing another outstanding, though-provoking and moving post. I love this blog!

    Oh, and “Go Hoos!” 🙂

  107. Thank you, my darling, for helping me to “get over myself”…I’ve been carrying around the loss to Syracuse like a bleeding ulcer. I care too much. I love this team too much. Not just the players or their play, but the attitude, the character they bring to each moment of each game. My sadness comes, not so much from the fact that we didn’t make it to the final four, but from the gut-wrench that I’ll never see this team play together again. I can and will hold them in my heart and treasure the joy they brought to me and to so many. And I will continue to love hard. Mom

  110. So sorry for your loss but so thankful for the years you had and the love you shared with Charlie. Thanks for giving us a glimpse of your heart and another reason to be thankful for every day for today is all we have for now. ((((Hugs)))) and love to you all.

  111. I am so sorry you had to put your beloved Charlie “down.” I have done this 3 times and it so hard! They truly are like another member of your family.

    Hugs and prayers!

  112. Great article and my sympathies to all. My father had EB simplex and was a paratrooper in WW2. When we were kids we would just develop “hard skin” and callouses on hands and feet. I played Rugby to a high level which was ok on cold wet days but not on hot dry days. I used a whole shop load of Vaseline and covered any really vulnerable bits with bandaids or tape. The time I realised what skin I had lost was afterwards in the shower. It does sting a bit. The good news I suppose is that I heal pretty quickly. Day to day I wear thin silk or Bridgedale brand liners and woollen socks. And if I am trying a longer walk I will use a Scholl or similar lubricant stick. My message is try not to let this awful problem spoil your life. It can take over your life and must not. By taking good precautions, (and managing our weight) we can cope with many things OK, Hope that helps
    Keir Mac

    Reply

    1. A paratrooper? Wow. How incredible. Thank you for the tips – I am always looking for new suggestions! And I agree totally with your sentiment. I tell my bots yes it’s hard. But it’s made me who I am on the inside and I wouldn’t trade that for the world. Thanks for reading!

      Reply

  115. “Inexplicably blooming”? I think not. Now you have a lucky orange rose bush, a blessing and a sign. Your writing on grief hits home in so many ways. I’m going to go cut the rose I found on my rose bush yesterday and put it on my kitchen window to remind myself to pray for you and all of my friends who continue to wish they had one more day with a parent, including me.

  116. How blessed you are for such a Dad. And how blessed are your sons? I had a wonderful father, but he didn’t know how to show his love this way. So precious!

  117. Omg I’m in tears. It was like I could have wrote this. I have been suffering my whole life without knowing what was wrong and my new dermatologist Said she was certain this is what I had and I came across your blog and omg I feel relief. Thank you

    Reply

    1. I am so glad you finally have a diagnosis Katrina. It can be such an isolating disease and there’s something about knowing we’re not in this alone that helps. There are a couple of Facebook groups for EB that are helpful and I’m always here if you have any questions. Hugs…

      Reply

  119. great picture of you in front of the ballroom rail at NYCC! If only the floor was raised!!!!

  120. I refer to my heart as “enlarged” — not medically speaking, thank goodness, but metaphorically. It grew the day I fell in love with Ross, and again on the days that Cameron and Peter were born. It got even larger when my children fell in love with and married incredibly wonderful people; and stretched to the breaking point when my precious grandsons were born. It just enlarged again, as I read this beautiful post. I am bowled over by my daughter’s ability to feel so deeply and then translate those exquisite feelings into words that travel directly to the center of my being. Thank you, Cameron, for filling my heart with joy, and and growing it with love.

  121. I’m quite new to the eb life!! I’ve been with my partner for almost 9 years and never really understood the disease..we now have a 3 year old son who also has eb and I’m super terrifed of the future!! Everything I read about it is negative and I’m an emotion reck!! My partner has educated me on how to pop them but I hate absolutely hate doing it. He just had a huge blister on the hard part below his big toe I popped it and the next day it had sealed back up and was like twice the size it was the day before..then he was playing outside and it popped!! Omg that was the worst cry I have ever heard in my life..and for it to be coming from my baby “oh lord” I need some advice!! Anyone with advice please help!!

    Reply

    1. Hang in there Kalia. I know it’s hard to see your baby in pain – much harder than your own. We don’t actually pop our blisters although a lot of people do. We use fine point manicuring scissors (I recently started buying surgical grade scissors on ebay for cheap). The scissors make a bigger hole so the blister doesn’t fill back up again. Also icing sore spots sometimes can prevent blisters from forming. But the best, and hardest, thing to do is learn when to cut off physical activity before feet get sore. Hugs to you…

      Reply

  122. Hi can I be cheeky and ask how your skin was when you were young?? My daughter is 3yrs old and has EB simplex and she is very severe with it she can’t walk so need’s a wheelchair and her skin is very bad with blisters and raw wounds she’s on lots of different medicines to try and help.. we have been told with her type of simplex she should be better than this and live a “normal” life which for me as her mother is very hard to believe seeing what she goes through daily x

    Reply

    1. Although we have never been typed, I think we have the mildest form. DEBRA has some great resources and depending on where you live you can get assistance and, most importantly, support. Hugs to you and your baby…

      Reply

  123. Reading this was like reading the story of my life. I am 27 and have had EB Simplex my entire life. I love what you wrote and I am thinking of printing it out just to show people who don’t understand when I explain my condition. It is so very frustrating when you say “I can’t walk that far, I will get blisters” and receive a response saying “Well if you do just put a Band-Aid on it.” And since you have EB you know that will not help and probably cause more blisters to form!
    I will say that I have found 3 remedies that seem to help the contain the blister issue. As you probably know once it changes color from pink-ish to white-ish it is far less painful and my family and I call this process “aging the blister”. I have 2 remedies to speed-up the “aging” process. 1. I use Band-Aid brand blister Band-Aids which actually “age” the blister faster than just letting it “age” on it’s own. I know I said Band-Aids make blisters worse but not these ones, they are made with different material and really stick so there is no issue of rubbing or moving around like a normal Band-Aid does. 2. I soak my feet in water with Epson salt. Sounds strange, right? When I was really young my parents and I found that whenever I would go in the ocean any blisters I had would not hurt nearly as much as they did before. Since we didn’t live near the ocean we decided to try to make our own little salt water solution, it really did help and also gave me a huge relief from the pain and discomfort I was feeling. And in terms of forming blisters; I call them “newbies”; I found something called Blistop by Flexitol. I would spray it on a forming blister and it was kind-of like hairspray for the skin, somehow it would stop the blister from growing larger. It felt like it would restrain the skin’s affected area. Now, I am not saying these remedies fix the blisters but it does help manage the situation.
    Since I am know that I will begin to ramble if I don’t wrap this up soon; I just want to say thank you for sharing your story. And you should also know you are not alone in the consistent frustration of people who can’t relate or even understand the severity of our situation. I understand completely and honestly that’s all I have ever wanted to hear… Thank you

    ~Holly

    Reply

    1. Thank you so much for reaching out Holly! It really does make it better to know we’re not in this alone, doesn’t it? And thank you for the tips – I am totally going to try them all! Hugs…

      Reply

  124. Cameron,
    Recently, I sent an email to Robin with the subject “Jane here, just saying I love Cameron (I found her blog!)”

    Here’s the essence of it:
    “I spent the past evening skimming many of Cameron’s many posts. I wanted to cry and laugh and hug her and hug you for producing her. It was a night for tears and smiles.

    I saw some fabulous photos of you and Cameron’s boys on her Instagram site. I never read blogs, nor look at Instagram; I have neither a Facebook account, nor use Twitter; this has been enlightening. There is one absolutely terrific photo of you and Ross at Christmas (and now the best is the photo she just added of June 20 1970 – we all were there!)

    Thank you, Cameron, for writing all of this and sharing it. As I just said to Robin, you should think about publishing. Your writing deserves a wider audience.

    1. Oh thank you Jane! It’s so wonderful to hear from you and your kind words are incredibly humbling! Mom and dad always told such wonderful stories about you guys from the early days and I’m so happy you reached out ♡ PS You can sign up to receive blog posts in your inbox 🙂

  125. Thank you, Cameron!

    I hope I didn’t spoil a surprise by telling Robin to look at your Instagram page for the picture you posted yesterday. I’m not sure she visits that site anyway. (If you have a photo of the whole wedding party we’d love to see it [speaking selfishly here]. That was long before digital and we have nothing from the day but fond memories)

    Signing up for emails sounds like a great idea, thanks.

  126. Yes, this is our life right now, and forever.

    I grew up with EB simplex, and my youngest son has it also. At nine years old, he is extremely active, even though we both know that many of his activities will result in blisters that keep him out of action for a few days. Currently, he’s on a travel baseball team, and his coaches are aware of the situation. He also plays basketball and will try volleyball this year as well. He watches as his older brother plays football, a sport that would never work for him. He tried lacrosse a few years ago, and the elbow pads and gloves immediately caused blisters on his arms and hands.

    Growing up in Arkansas, I was on a swim team year round, because the chlorinated water was great for the healing process and, of course, the sport rarely caused blisters. My coach also carried me around the pool deck to save my feet from the hot concrete. I’ve tried to get my boys interested in swimming but, no such luck.

    I do have a question that I wonder if you’ve thought of, or know anything about: What happens in the event of a broken bone? Something that seems to be a right of passage for so many kids would be absolutely dramatic for a child with EB. A cast would be horrific. Have you ever heard of any type of alternative cast for kids with EB simplex who break an arm or a leg?

    1. Hi Michelle! Thanks so much for sharing your story! What shoes does your son wear? Do you have any tricks for staving off the inevitable? I haven’t been able to find a pair of athletic shoes that don’t give them blisters within a minute. So for the most part, they play in their Crocs.

      I too have tried to get my kids into swimming and they do it reluctantly but not with the fervor I had hoped for 🙂 As for the broken bones, I actually broke my arm when I was a kid and had a regular old cast. The doctors took care to put a lot of padding on the inside and for the most part I fared well. My youngest broke his wrist last summer and because it was a minor fracture, they chose to put him in a removable splint instead of a plaster cast and he did well in that. We could remove it if we needed to to cut blisters or get in the pool (phew).

      xo
      Cameron

      1. Well, we do a bit of trial and error with gym shoes, but right now the ones that work best are anything made of lightweight, breathable material (no leather or vinyl) and which are low-profile (meaning they do not come up very high on the ankle). He does have a pair of baseball cleats that cause blisters nearly every time he wears them in the summer. For fall-ball, when the weather cools down, it’s not so bad (we live in Chicago).

        I just ordered him a new pair of Nike Kids “Tanjun” (search for it on Zappos). These types of gym shoes work pretty well, but there definitely will be blisters the first few times he wears them. He gets very excited about a new pair of shoes, and very disappointed each time when he realizes he won’t be able to wear them every single day until after a breaking-in period of anywhere from a few days to a few weeks.

        The socks make a big difference, too. He would love to wear thicker, multicolored gym socks, but when the weather is warm those are definitely off limits mainly b/c they are just too warm, too bulky, too much. Mostly, he just wears ankle high, thin, moisture wicking, stay-dry socks. Again, it doesn’t prevent the blisters entirely, but it does help.

        When he has open blisters, we cover them with a dollop of Aquaphor so the socks don’t stick to the wound. And, in the summer, I try to get him to the pool as often as possible to let the chlorine do its magic. When the pool doesn’t work out, I put him in a lukewarm bath with about 1/4 cup of chlorine bleach. It helps to dry out the wound and also keep it clean.

  127. Way to realize that at 40 the sky is the limit!! Embrace and celebrate each and every day! Or in the words of Dorey. “Just Keep Swimming. Just Keep Swimming. Just Keep Swimming, swimming swimming!!”

  128. Thank you for sharing your thoughts and feelings. July 12th will be the second anniversary of my dads death. His service was on a Friday and we all tried to wear something orange or with orange in it. My brother ordered some stickers from a shop in Clemson for those who were not wearing orange. I hope one day you will be able to wear that orange dress. I fear these anniversaries will always be tough days. I hope you receive the love and support you need..Peace to you, from one daughter to another..

    1. Thank you Amy. We had a good night with good friends and laughing happy kiddos. I’ll be thinking of you on July 12th. Love and hugs to you…

  129. Thank you for sharing this. I have EB as well and everything you described is exactly my life. I went to doctors when I was a child, but the doctors could never figure out the disease so they never did anything for me or diagnosed the disease. I am now thinking about going to the doctors again for it to be diagnosed. Now that I’m older (34) it hasn’t gotten any easier and it is hard to do anything with my family and friends. Just having a handicap plaque would be helpful. Again thank you from a fellow EBer.

    Reply

    1. Thank you Fiana. It can be so hard and so lonely because it’s a disease that is so far out of everyone’s wheelhouse. Try to find a dermatologist who can write you a note to take to the DMV to get a handicap placard. I only use it when I have to but it does make a huge difference, especially in the warmer months. Also there are some Facebook groups that are often very helpful in terms of learning new tips and tricks. Hang in there and know I’m always here if you ever have any questions!

      Reply

  130. You have an amazing talent for reaching one’s soul. I read your blogs and think so much of my Dad and although our stories are not similar, our love of family and moving on is so much the same. Thank you for what you share and for sharing your talent. You have no idea how many you touch. Thank you.

  132. Wow! Thank you for sharing your most personal thoughts, to being an open book. Sometimes it’s a bunch of little things that send us into that dark place where we just need to cry it out. I just wrote five pages in my journal today, hoping to release a lot of demons yet I’m still here thinking about the events of the last couple weeks.

    1. Thank you so much Amy. It usually is a bunch of little things, isn’t it? I’m a big believer in crying and writing. They are therapeutic, physically and emotionally. Usually the relief is immediate for me. I just think this time it’s going to take a little longer. Wishing you peace and love as you work through your demons. Sometimes it is comforting to remind ourselves that others are going through the same thing… xo

  133. I found your blog only a few months ago, but I’ve so enjoyed going back and reading your older posts! For me, it all started with the Harry Potter one… I also lost my Dad. He was diagnosed with terminal cancer and given 3-6 months when I was 7 months pregnant. I’m grateful he got to meet my son. And my grief wasn’t what I expected, either. I could never find a way to articulate it properly, until I read your words: “It just means that the love of my father was so deep, so resolute, so infinite, so powerful that it protects me. Even though he is gone. It isn’t just in my heart or the crevices of my memory. It is in my very skin.” And I thought, YES. Exactly. YES. Just reading that brought me so much peace.

    I question so many of the same things that you do. My abilities as a mother, the choices I make for my family, and whether or not my actions – my existence – make a difference. You’re not alone in those thoughts. I’m willing to bet it’s more than just you and I that think them.

    I’m incredibly thankful for your gift- the way you can articulate things that I think, but cannot properly express. Please keep writing. Please keep loving hard. It’s certainly made a difference to me. Hang in there.

    1. Thank you Kelly. Both for reading and for your incredible words. You don’t know what they mean to me. Especially right now. You are right – it is not just you and I going through this and there is something to that, isn’t there?

      I am so sorry that you lost your dad but so happy he got to meet your sweet baby boy. And I know that he will continue to watch over you both. As crazy as it sounds, my dad always lets me know he is still here. Watch for the signs. I promise you will see them. Hugs and big love…

  134. Very nice read. Myself and several family members have EB simplex. Very close to our lives as well. Growing up and living in the pacific nw is very helpful. I lead a very regular / normal life 8 to 9 months out of the year due to the weather. I try to avoid places like Las Vegas. I’d be happy to help with questions that anyone may have. Several generations of my family have EB simplex.

    Reply

  135. This is beautiful and inspiring and heart wrenching and true. It REALLY resonated with me Caneron. Thank you for being an open book ❤️

  136. Once again, very perfectly said!! You should start a blog or something. Thank you for your wise words. I will be sharing these with my children!!! All the best to you and your amazing young men!

  139. Hi guys I am the mommy of a 5yr old son with EB simplex, I was wondering if anyone had any shoe or sneaker recommendations, right now I just buy these outdoor slippers called foamtreads since they open up wide and he doesnt have to squeeze his feet in. But I think he is quite sick of them lol and he is in school now (sigh) the feet are so troublesome for us, any suggestions guys?

    Reply

    1. Some of the comments above have great suggestions. What I have universally found is that everyone is totally different. My boys have never had luck with sneakers, at least for more than an hour at a time. Both my boys wear Crocs every day (they’re loose and wide) but we have a few pairs of slippers/moccasins that they wear when their feet are sore. Would love to hear everyone else’s suggestions too!

      Reply

      1. I’ve had EB all my life and now I am 32. I have tried a lot of different products and what I have found for me is changing shoes everyday. I have 5 pairs of shoes (Converse All Stars, GEOX Nebula, Adidas Climax, Nike Running shoes and can’t remember the last pair) but what you have to realize is once you start feeling a little pain or “friction” on your foot, its time to change socks and shoes. I have made it to almost 6 months at a time without having a blister on my foot by doing this. Though moving to Florida, it definitely is a little harder but its finally manageable for me now by changing shoes everyday. I use WrightSocks which have been pretty good so far but I will be trying some new pairs to see how they are.

        Reply

    2. It may sound strange but I have found All-Star Converse Sneakers to work the best with my condition. I think it has somethings to do with the thin cloth tops and the flexible sole underneath. They may bother him at first but once he breaks them (I find this happens after just a few wears) they may help. I know they may be a bit procey but I can say first hand they worked really well for me! Hope this helps and good luck!

      Reply

  140. As usual, you managed to write what’s in my head. But better! 😉 I had a similar dream about my Dad earlier this year. I woke up feeling truly at peace, happy and grateful. We are so lucky. I know this sounds weird, but I feel that you and I would be great friends in real life. I am so thankful for your words and the comfort you have provided to me. You’ve inspired me to share my own struggles more broadly (Facebook counts, right?). And in life I will do better at communicating the real stuff and not just settle for the surface-y conversations. There is strength in numbers.

    1. YES! I hope it doesn’t sound condescending to say that I’m proud of you but I am. And grateful. Thank you for starting the conversation. And no – it doesn’t sound weird at all – I absolutely think we would! Actually, just because we haven’t met doesn’t mean we can’t be real friends 🙂 Hugs…
      C

  141. I SO know what you mean about the whole kids and gratitude thing. I always felt (and still do!) like I walked a parenting tightrope. Too much vs too little. Too lenient vs too strict. Too much helicoptering vs not enough attention. Expecting too much vs not expecting enough. I always feel like I’m teetering and about to fall over. Never like that Wallenda guy who goes forth so sure-footed.

  142. Love it! I hope I can do this with my grandchildren. They are being raised in a crazy world! I have been doing well at being very grateful lately. I’ll keep up the good work!

    1. They really are Susan. It’s so hard to find the right balance between teaching them what you think is important and letting them find their own way. Kudos on being mindful of gratitude. I’m working on it too. xo

  143. Cameron, I too was very close to my dad and seeing him slip away with Alzheimer’s was just about unbearable, I knew I was losing someone who knew better than anyone. In the end, I felt the loss not for myself but for him and for my children. How proud he would have been of Sutton becoming an attorney for he always thought that Sutton was SO smart.and he played basketball with Canon in our garage when she was three and said “this girl is an athlete”. Little did we know she would be a college field hockey player. He had so much insight. I am sorry they didn’t know him well or understand fully what kind of man he was. My kids posted loving,sweet messages for me on FB yesterday for my birthday. I owe that to my dad. He taught me well.
    One day you will get those same loving, sweet messages from the boys and you will realize, yes, he taught me well.

  144. Have a great day in C’ville. Glad we got to hug last evening, and even more thankful for this latest post.

  146. you are so poetic, and much of that skill is Ross’ DNA coming through…….regards, Chick

  147. thank you and my hard to love friend thanks you also. I will call her tomorrow even though … well you know.

  148. Enjoy!!! I wish I could convince my daughter in law who has decided to separate from my son that 18 months and 3 years is such a bad time to leave. I can’t even imagine when they are 8 and 10 and trying to explain why mom did this to them when they were just babies. I will pray for all of us!

  149. Thank you so much for sharing. I am 38 now and was diagnosed as EBS recently. Your story is exactly same as my story-a life with EBS. I look perfectly fine and healthy but crying inside. It affect my personality as well when i was younger. Now I can even openly tell people about my symptom and doing volunteer at Debra to help patients with more severe symptoms. I just hope that more people understand about EB and people like us don’t feel that they are alone.
    – Aya

    Reply

  152. I always love your posts, and they take me back to the days when my own children were little (they are now 24, 27, 28 and 29!); I also lost my beloved dad when my children were 3-8, so I resonate with your posts about loving hard. But today, having just come home from the polls, this post of yours is simply brilliant in a whole new and much-needed way. I look forward to your book, whenever you choose to write it!!!

  153. Nicely put! I can absolutely relate to the type of week you had. It can be so incredibly difficult to love hard when our hearts are bitter and resentful but we have to do it…we always win when we love!!

  154. I love this one so much! Cameron, you have a gift. Thank you for sharing it with us. Merry Christmas!

  157. Wonderful essay! From your description of the elderly gentleman, I knew his identity immediately. He and his wife were longtime clients at our investment firm. I shared your essay with my co-workers this morning and we have all been weeping at the sweet memories. This kind gentleman passed away about 9 -10 weeks after your encounter with him. Thank you so much for your kindness to him, as well as the kindness and love of your sons. We will share your essay with his six surviving children. Have a blessed Christmas with your beautiful family!

    Anne Toms Richardson Norfolk VA

  158. Yep – That was my Dad. I’m 5 of 6 and yes the last years of his life were difficult but he kept it together admirably and always had a nice word or easy joke for a stranger.

    1. Edward – first let me apologize for not writing sooner. I didn’t realize there was a spam filter on comments until today. I can’t tell you what a gift it was to meet your dad. I lost mine about a year earlier and I do believe that your dad and I crossed paths for a reason that night. I wish I could describe the smile on his face when he spoke of his children and grandchildren. Thank you for reaching out. Hugs to you and your family ❤

  159. Thank you for the kind words. Joseph and Mary were my parents. I’m sure my father was thrilled with his meeting you and your boys last year. He loved meeting people and it gave him great joy. He did miss my mother terribly when she passed. They were truly wonderful, kind parents and are missed by many.

    1. Oh Judith – first let me apologize for not writing sooner. I didn’t realize there was a spam filter on comments until today. I can’t tell you what a lovely evening we had with your dad and what a gift he was to me on that particular night. I wish I could describe the smile on his face when he talked about his children and grandchildren but I suspect you’ve seen that look before. Thank you for reaching out. Hugs to you and your family ❤

  160. Cameron, you are so insightful! With a tender heart you write. I read. I cry. Always love these posts❤️

  161. Thank you! Your letter to Jack is so lovely and so special. Thank you for giving me the chance to stop, remember and then try to love harder. You, are so very special! Merry Christmas. Fondly, Elly

  162. So true Cameran! This day, January 2nd, offers me a chance to keep positivity in the forefront ! I’m going with that! ❤️

  166. If your into basketball and that is how you want to spend you time more power to you and your family. Enjoy every basketball moment.

  167. Some of the most meaningful and deepest conversations my wife and I have had are in the car, on a trip. I don’t know if it is the quiet, the dark or the lack of outside “distraction”. But there is a peace that makes for good talks. God bless you and your family. Thanks for sharing.

    1. I couldn’t agree more Barry. Driving is my zen time. I think it started 20 years ago when I was driving the 8 hours back and forth to New Haven. It’s still what I do when I need a break or I need to clear my head. Thank you for reading!

  168. What a lovely post. What a lovely thoughts for your kids This is very sweet of you to write this. xx

  169. Wow, I’ve never identified more with an article. I have a two year old son and a second son on the way. My two year old and I both have EB simplex. Your experiences mirror so many of my own and I am so thankful to know that feeling of “no one understands completely” is false. Thank you for writing this. I appreciate your insight and honesty on a level I can not describe. I hope you and your family are doing well and enjoying life ? Much love and support to all of you!

    Reply

    1. It’s always good to feel like you’re not the only one, isn’t it? Especially with a disease like this that is so rare. If you want to chat or exchange ideas or even just vent any time, my email is LOP@luckyorangepants.com. So glad to have you here ❤

      Reply

  170. This post was spot on! I regularly break up with Social Media and it is so beneficial. It is hard as so many of my “real” friends “only” communicate via social media. My last hiatus was for a year. What amazed me in that journey was how few people stayed in touch the old fashioned way (visits, phone calls, letters). Love your blog!

    1. Thank you Lisa! I feel the same way. It’s so hard to go back to the old-fashioned way of doing things when most people do not. It definitely takes a lot more effort and I feel like I’m dropping the ball a lot but I know I’ll get there eventually. Thank you for reading ❤

  171. My first thought was to send you a text to tell you how much I loved this. But then, I realized that I will just tell you in person with a big hug and a cup of joe. Keep writing. I’ve missed it.

  172. I call it ” Social Media Overload Syndrome” and as a retiree it seems to crop up in my life when the subject matter on the radio, news, t.v., and people’s lips focuses upon a few people, events or topics. It’s at that point that I need to get away. And fortunately when I travel to remote locations where the news doesn’t follow and the people are concerned about the simple realities of day-to-day living that I regain my sensibilities, I relax, and I recapture a more balanced view. All to say, I believe that a contented existence doesn’t have to be an “All or Nothing” choice.

    And B.T.W., I find your eloquence to be calming in itself. Thanks !

    1. Thank you so much John – what a lovely compliment! You are absolutely right – it does not have to be an “all or nothing” proposition but I think I needed that complete break to reset my perspective and my balance. It is awfully hard to maintain contact without it I’m afraid so I suspect I will be back soon but for now, it’s a vacation I’m thoroughly enjoying 🙂

    1. Thank you Lucie! And thanks for the link to the podcast – I’m listening to it right now!

  174. I’ve had similar thoughts but boy, you express them in such a lovely way! I find social media to be a bit like a drug – when I feel like it’s overstepping, I try to reign it in. For example, Facebook is now on my third iPhone screen so I have to swipe a whole two times to access it. So far it’s working out as a solid deterrent for my lazy thumb ?

    1. Thanks Alison ? A drug is a great way to put it and in fact there is some research suggesting that there is a dopamine high we get from hearing the ding on our phones or seeing a like. I hadn’t planned on taking a step back but I’ve really enjoyed it.

  175. The best news to wake up to! Congrats! I too, believe in signs, thanks for sharing your grace.

  176. It’s so good your voice is loud otherwise I couldn’t HEAR you from so far away. Keep it coming!! ?

  181. I have EB, I hear you, shoes for me are the biggest challenge. I’m 44, no one understands, no one cares to understand, doctors have never heard of EB (at least here in the UK), my whole maternal family have it, and I’ve never met anyone outside my family with it. Growing up is the toughest time for sure, I just hide it away for the most part (toenails, fingernails are the worst, especially in summer when you really can’t wear sandals). I’m thankful that my 7 year old didn’t inherit it…best shoes btw – Coach sneakers/tennis shoes (‘Barrett ‘were the best style, and I begged Coach to not discontinue them, but had no reply) – no seams/stitching inside – pricey I know, but I can actually walk for perhaps 1-2 hours without any kind of pain.

    Best wishes
    Nikki

    Reply

  182. Hi, my little one is two and is sooooo badly blistered on her feet. I usually use a lancet to make a hole and drain her blisters but I read here that you use scissors, how small do you make the cut? I’m an Esthetician so I am use to working with skin but have not ever used scissors on it. Thanks for writing this article and thanks to all those who commented I learned so much!!! just need to figure out the scissors and shoes for her.
    Thanks again,
    Brandi

    Reply

    1. It depends on the blister honestly. Just a small cut to let the blister drain and not fill back up. I use surgical grade scissors (I’ve found those are the sharpest). Shoes are always an issue with us. I wear ballet flats all the time but it’s much harder finding shoes for my boys. They swear by their Crocs!

      Reply

      1. Thank you so much, I am just seeing this reply. I still haven’t found a great shoe for my little girl, but I’m figuring out little things that help her not be in as much pain, like soaking her feet in soapy water before I lance her blisters. Your article is so helpful I reread it today ? Thanks again.

        Reply

  183. The quote, “Because sometimes you have to bleed to know you’re alive. Sometimes you have to take a risk to know what you value.” says it all!

  185. This is my favorite line: Like all of your muscles, your heart is not as flexible as it once was. Amen! I think we try too hard to avoid risks and give up our control. But sometimes those beautiful moments are out there, if only we’d take a chance!

  190. This is beautiful. My kids are grown now, but I cherished those summers, too. I loved no schedule- time to enjoy just hanging and not rushing, no homework. And no added stress. Now I am cherishing my playtime with my 3 year old granddaughter with a grandson coming in Oct. I cherish these same playful, joyful times with her.

  194. This post gave me chills. What a heartfelt and powerful anecdote. Thanks for the reminder to appreciate our lives. I think we need that more often than we get. Your kids are lucky to have such a conscious mama. Sharing this!

  195. Such a beautiful post! Tomorrow is my daughter’s FIRST first day of school, and so today- like you!- we are heading to the beach. I’ll carry this story with me as we go!

  196. You write so beautifully! Wow what a beautiful description of a perfect day. I hope the next 8 summers are filled with glorious memories like this x

  197. This is very nice. Mine are still so little that I feel that I still have so much time, but it’s true that it’s such a fleeting time!

    1. I feel like the older they get, the faster it all goes. Hope you’ve had a good summer with them!

  198. Oh I feel you mama, the years go by so fast. The love we show them now means we will be in their hearts and their lives forever.

  200. Sounds like a perfect day. My little guy is still a toddler so I’m just starting to feel the anxiety of fleeting time.

  202. I’ve been collecting quotes this week for a new blog post on this exact feeling. You’d be surprised at how universal it is through writing from every decade! Here’s my favorite that I bet you’ll appreciate: “It was still late summer elsewhere, but here, fall was coming; for the last three mornings, she’d been able to see her breath. The woods, which started twenty feet back from her back door like a solid wall, showed only hints of the impending autumn. A few leaves near the treetops had turned, but most were full and green. It was a transitional period, when the world changed its cycle and opened a window during which people might also change, if they had the inclination.”

    1. I LOVE that Robin. I have to say – you are a great collector of quotes. The ones in your Soulmate post were amazing. I used to love thumbing through my Bartlett’s Book of Quotations when I was younger. I might have to go dig it up! xo

  203. I love this post. I decided to take the summer off for the first time in ages and after graduating from college it’s exactly what I needed. You are right – summer is a time to laugh a little louder, talk a little longer, and all those other fun things, but you are even more right about the last line. No matter the season you will always be a family and that’s what’s important. Even as time passes. Fabulous post!

    xo, Taylor || The Millennial Sprinkle (thesprinkle.tayloramead.com)

  204. This is so beautiful. Being present with our children and helping them work through their emotions are the best gifts we can give them.

  205. Love this! I too sort of dread the new school year, even while I’m looking forward to having more writing time. We spent our last weekend crashing in the waves too!

  206. This definitely resonates with me since sometimes I feel like supermom able to handle everything and then some days you just feel bogged down. Love this post it’s like a mother’s pledge.

  207. all true….the worst is the “worry” keeper. Too often I suspect someone coming home 15 minutes late is involved in a head on collision versus they just left a little later than planned. I am still working on that one at age 72. I should look into alcohol. A mother’s job is never done….whoever coined that was spot on! Thanks for this thoughtful post…..

    1. YES! oh my gosh Maggie I’m the same way if someone is late. Fortunately Billy knows this and humors me with real-life updates ? I am going to go crazy when the boys start to drive…xo

  208. Wow, yes, I was the keeper. And it is hidden, and unappreciated for most moms. When I left after 20 years, I feel sure it was quite apparent what I had been keeping…
    And by leaving, all that I kept is lost. Sad…
    OH, except the worry. Wasn’t it supposed to stop when they grew up and had a family of their own??? EEK!
    I love your writing!

  209. I have moaned to my husband about being responsible for all these “thoughts” and feeling like the weight of everything can be crushing.

    You put this so perfectly, so eloquently.

  210. So good. Thank you. I lost my own daddy when he was 61…he loved UVA games too. And like you, we have really good seats but the kids love the hill.
    Keep Climbing.
    Wahoowa. ❤️

  211. Dear Cameron…

    Thank you for such a beautiful way to describe what it is to care and all the places we can show love despite the enormity of it.

    I am a keeper of the keepers… a grandmother.

    I, and others like me, stepped out of the 1950’s traditional roles into a bolder more realistic view of the world. We are exceedingly grateful that you, our daughters are living that reality. You got the message. You grasped what we were trying to stretch out to you– that you can have it all, but it just wouldn’t look like you thought it would. To stay that course, we had to be really honest about what we wanted for ourselves. For some of us, the cost was immeasurable, it scared people and it got messy.

    We are the keepers of emotional honesty, the truth-tellers. People trust us with the messiness of their lives.

    Being the keeper of emotional honesty is not a job people apply for and lives in a place in the brain with other savant-like behaviors. In our clairvoyance, we hold our breath and hope we are not “shot” delivering a message. We weep for those who are in pain that we cannot fix. The backwash sometimes feels like the weight of the ocean, but we just can’t stop because we know we are birthing GROWTH. What my daughter recently pointed out TO ME, was that I shouldn’t be surprised. I guess it means swimming in the ocean instead of trying to weigh it.

    Emotional honesty takes fierceness and gentleness. Once we understand the balance of holding on and letting go, we become the keepers of the long lense–the keepers of human growth, to more whole selves. That’s priceless AND weightless.

    Thank your mother for me, she did a good job.

    Leslie Evans

  215. Thank you for your blog!! Finally, someone gets it!! My two sisters and I have had EB Simplex (maybe Weber-Cockayne type) all our lives (ages 54, 50 & 50). We live in the South, and the heat & humidity can be brutal. I soak my feet in cold water & Epsom salt. My sister uses that or diluted betadine. This helps with the soreness. I agree with Holly that people don’t understand when you tell them you can’t walk far because you get blisters. My twin sister says having this builds character. That’s definitely a positive way to look at it!

    Reply

  216. Wow! This is a fabulous idea. I love your inspiring words… “And more often than not, what people really need is not a 5 dollar cup of coffee, but 5 minutes of human connection.” SO TRUE! We all think we are so connected because of social media, blah, blah, but I sense so much loneliness in the world. So much hunger for TRUE connection. I hope your challenge catches on!!! Thank you for sharing.

  217. Thank you for this perspective, so helps to frame a devastating loss. We too loved this team through every minute of a historic winning season (31-2! ACC Champs, regular season and tournament!) and we were also there in Charlotte for the crushing historic defeat. It’s been a tough week but in the words of Coach Bennett this is life…and it’s much bigger than the game. Long wait until next November but we have faith in the system and believe in Ty and Kyle that they’re going to “get one” before they’re done!!

  218. This piece was like a balm on my tender places right now. Thank you. I look forward to reading more – already written and what is to come. Please, keep writing. Keep sharing.

  219. Thank you for your honest words. Indeed we experience to much “hard” stuff in our lives. And while going through those painful experiences does hurt and leaves marks and scars, You are so right that we learn we can get through it with the strength from God and support from friends and family. I say this often being a fan of superhero things… I loved in “Batman Begins” when young Bruce Wayne in anger after his parents death, runs and falls down. The butler Alfred Pennyworth who is now caring for him says “You know why we fall down Master Bruce. So we can learn to get up.”. Or to quote the song that is my life theme song from the band Chumbawumba “I get knocked down! But I get Up again! No you are never gong to keep me down!” (Tub Thumping)

  220. I so needed this. My daughter has flown, but is still in town. It’s my boys that are making it the hardest for me. My oldest son will be leaving to his forever soon; we still have a sweet 13 year old son. Your words helped me tonight. My eyes are filled with tears, but I treasure your words. Thank you.

  221. I just started following you because had seen the post about being “The Keeper”… And then I saw EB! My mother, daughter, and I have EBS. ?

    Reply

  222. I realize I am a late poster to this thread, but I had to share this info. I grew up back east where summers were hot and humid. I could barely walk. I now live on the coast in the Pacific Northwest where summers are much cooler (low 70’s) and have little humidity. The difference in my mobility is astounding — it has been a miracle. Also, winters are mild and snow-less, so I can wear regular shoes rather than boots and walk at a brisk pace for at an hour with no blisters. Something to consider if one has the ability to relocate, or if a decision needs to be made as to where to send kids to college.

    Another point is that when I go to warm areas, I use a kick scooter, and I’m 53! It has saved my feet many times.

    Reply

  223. Thank you. I have those very same friends and want to hide when I have to use my handicapped tag because I cant make it across the street without paying a painful price. I appreciate you sharing. I am 53 and have found one sport that I can play with EB. I play adult ice hockey and have not gotten any blisters. They keep the rink bone chilling cold. I just wish I would have discovered the sport before my 50’s lol. Oh and if I want to wear heals for a bit on a cool summer night I use 40%UREA cream sometimes it works something it doesn’t but when it does in one happy girl. I found your blog/post when I was trying to find socks that you can freeze or socks that I can use to run in. I’m a glutton for punishment but I’ll never let EB keep me down.

    Reply

  224. I haven’t been this inspired by a writer other than my mother, arguably the best in the universe lol, in many years.
    thank you.
    P. S. Let your mom know I found you on Facebook ?

    Reply

  225. I just found your blog because my sister in law shared an awesome post of yours (about being the keeper). I loved it so much I looked up your blog and was so surprised to find out that you also suffer from Epidermolysis Bullosa. Your words described exactly how I’ve felt my whole life. Thank you for eloquently sharing. I hope you don’t mind I shared this post on Facebook.

    Reply

  227. So happy you are well. Beautifully written along with so many truths that some people never realize.
    Thank you.

  228. So glad you have found your words again! I’m wiping away my tears after reading this. Once again, you’ve nailed it! And also so glad to hear your heart is functioning normally! ✨💚💫

  229. I have EB disease and can relate.. The worst part of having EB is watching my children and my grand baby suffer with it..
    I can remember times where I would literally cry as I crawled to my car after work.. however if I could take it from my children, with the consequence of having it much worse, I would without hesitation
    I hate EB disease from the depths of my soul. However at the same time, I have to remember that I am blessed to have the milder form of EB, I have EB Simplex and not Junctional EB, or Dystrophic EB..
    So to those of you suffering this evil disease, I am right there with you.. praying for a treatment or a cure..

    Reply
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