Rachel Roberge

@rachel-roberge | contributor
Rachel Roberge is a proud Mom to her daughter Carly and son Jackson. Currently Co-Founder, Guilded & Co, consulting in brand strategy, creative direction and sustainability, she previously worked at a hedge fund and prior to that was at NBC Nightly News with Tom Brokaw. In 2009, she and her husband Skip found out their son was going to be born missing his right hand. As a result she is a forever proud and active member of the limb different community.
Rachel Roberge

Doctor Said, 'We're Pretty Sure Your Baby Is Missing His Right Hand'

“We’re pretty sure your baby is missing his right hand.” If I could go back to the day my son got this diagnosis, what would I tell myself? …Breathe. You’re allowed to cry. You’re going to cry a lot… for a while. You’re going to wake up in the middle of the night to cry only to find that your husband is also awake. He’ll be crying too. You’re about to go through many tests. Find the best geneticist. Find the best fetal cardiologist. Write down every question you have. If you think the question may sound crazy, ask it anyway. Get answers and write those down too. After all the tests are complete, they’re going to tell you everything looks good. It seems to be just his hand, but you’re going to be afraid they might be wrong. You won’t feel quite sure until he’s born. You’re going to have a lot of sonograms. If they’re so sure it’s just his hand, why all the sonograms? You’ll feel uncertain and scared, so get support. You’re now part of the “limb difference” community. Check out the Lucky Fin Project, Born Just Right and Living One-Handed among other great resources. You’re going to spend your 40th birthday in the hospital because there will be other pregnancy complications. It will be six weeks until your due date but guess what? Surprise! You’re going to have your baby boy. They were right. It is just his hand. He’s beautiful. The best birthday present you will ever have. And to think you spent all that time worrying. He’s perfect. Perfectly imperfect. Aren’t we all? When you bring your son home from the hospital your daughter will be almost 3. She’s not even going to notice his missing hand at first, even though you tried to explain it to her in advance. When she does notice, it’s going to be a non-issue. She’s going to be crazy in love with him, and he’ll be crazy in love with her. When your little boy becomes a toddler, he’ll already amaze you with all he can do. Watch out, he’s going to be a climber. You’re going to have to take the handles off the lower kitchen cabinets because he’s going to climb on the counter when you turn your back for five seconds. When you take him to the park he’s going to climb on everything and love it. He’s going to play with all the kids and pretty much all the kids are going to ask about his hand. Most will accept it when you tell them he was born like that. Some will be afraid and run away. He’ll be too little to notice but it’s going to sting you… and you’ll tear up when he runs away, blissfully unaware, to climb and play some more. When your boy is 3 and a half, you’re going to be tucking him in one night and he’s going to start softly crying, his little lips will be turned downward, heavy with sadness. He’s going to tell you he doesn’t want his special hand anymore. He wants his fingers to grow, and he’s pretty sure “they really, really will grow, Mom.” His fingers aren’t going to grow, but you’re not going to have the heart to tell him in that moment. You’re going to tell him you love him the way he is. Aside from that, what can you do but hold him close and let him express everything he’s feeling? When he finally falls asleep your tears will fall. You’ll realize this is one of many things to come that you can’t fix for your child. When he’s 4, your beautiful little boy will tie his shoes by himself — with one hand no less. You’ll realize that this simple act will inspire you and others. The pride, the joy, the loving and knowing he’s yours will be remarkable. Even at a young age, if he can find a way to do something, he will, and he’ll practice until his goal is realized. It’s almost as if something deep within is driving him further. Your son is going to love basketball. Even at just 5 years old, he’s going to become good at it. Shockingly good. He’s going to want to play every day — any free moment he can. He’s going to become best buds and kindred spirits with a college student named Kevin Laue. Kevin is the first person partially missing his left arm ever to be recruited with a full scholarship to a NCAA Division 1 basketball team. Not unlike Kevin, your little boy will have seemingly unstoppable determination. Photo by Ned Dishman So breathe. It’s going to be OK. It’s going to be better than OK. This is the beautifully messy, imperfectly perfect life you’ve been given, and you won’t want to trade it for anything. The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Rachel Roberge

Tribute to Douglas, My Cousin Whom Doctors Underestimated

My cousin Douglas died of natural causes in his sleep on October 8, 2016. He was 36. Douglas was born with cognitive disabilities. As my cousin Jamie, his sister, described, “Douglas was brave. He knew he was different.” He lived his life with unstoppable exuberance. When he was little, doctors told my aunt to expect Douglas would never work or live independently, but as he grew he persevered time and time again and proved them wrong. Doug went on to live independently with minimal assistance at times, and boy did he work, a lot, mostly at restaurants and Walmart. I honestly thought he would live to be 100 and become one of the richest guys I knew. Recently I attended his memorial. Well over 100 people showed up to pay their respects… many friends and colleagues from Walmart were there to say goodbye to their beloved “Dougie.” I noticed a little elderly woman enter with tears flowing from her eyes. Her name was Marie. She was a customer at Walmart. She told me she adored Douglas. He always greeted her with his warm enthusiasm and a smile, offering to help carry her things throughout the store as she shopped. She didn’t have family anymore and would look forward to spending time with him. A few days earlier, she went to Walmart but instead of being greeted by Douglas she was greeted by his smile from a photograph displayed in the entrance announcing his passing. She came to the memorial to let his family know Douglas had brought a treasured joy to her often solitary days. It turns out Douglas was indeed one of the richest guys I knew – rich with a generous and radiant compassion towards others. We could use more of that in our world. Thank you for sharing your wealth, Douglas. We’ll be sure to spend it wisely. We want to hear your story. Become a Mighty contributor here .

Rachel Roberge

Letter to Mom of First Child to Receive a Bilateral Hand Transplant

Dear Pattie Ray, I along with millions of people worldwide have now heard the story of your remarkable son, Zion, and his bilateral hand transplant at The Children’s Hospital of Philadelphia (CHOP). As you might imagine, Zion’s story resonated in the limb difference community, and many of my own friends and family reached out to me to share this amazingly courageous and groundbreaking story about your beautiful son. Our stories are so different. Six years ago, my son, Jackson, was born missing his right hand. Zion lost not only both of his hands but also his feet due to a life-threatening infection. And on top of that, you gave Zion your kidney as the infection caused multi-organ system failure and the transplant became necessary. There’s one thing I immediately felt like we have in common, though. I saw it in your eyes when I watched the video CHOP released about Zion’s story. There’s something about having a child facing a challenge in life that’s unmistakable. Many other moms out there with children facing challenges will know this look. It’s hard to put into words, but it’s the look of love, amazement, dedication, encouragement and commitment all mixed in with a little sadness and trepidation knowing what your child will face on a daily basis. In the video you say, “This is just like another hurdle that he jumps… he jumps so many hurdles, he’s so amazing, this isn’t the first amazing thing that he’s done. He’s done, been doing, amazing things since he’s been sick. I don’t know many adults that can handle half of his life on a day to day basis.” That resonated with me. Day to day I am blown away by what my Jackson can do. Like Zion, he’s also a “normal” little boy and as moms we have to mother them, direct them, even discipline them despite their limb differences. But there’s always that little spark. Something that stands out and joyfully educates us each day. Zion has captured hearts around the globe, including mine. His wonderment, his honesty and his ability to do so much without hands and feet is inspirational. And as he says in the video, his grandmother says he’s “smarter than a lot of grownups.” I’d say his grandmother is so right about that. Zion’s intelligence shines. I saw one woman post, “This young sweetie is an old soul — wise beyond his years.” Indeed! But this letter is to you, Pattie. You have captured my heart and sustained my hope that we can look forward to a better world for our children — one with more acceptance and awareness. I truly believe your son is a reflection of all you’ve given to him and will continue to give to him. I celebrate you as an extraordinary woman and mother. With deep appreciation, Rachel Roberge The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. Lead photo source: YouTube

Rachel Roberge

Doctor Said, 'We're Pretty Sure Your Baby Is Missing His Right Hand'

“We’re pretty sure your baby is missing his right hand.” If I could go back to the day my son got this diagnosis, what would I tell myself? …Breathe. You’re allowed to cry. You’re going to cry a lot… for a while. You’re going to wake up in the middle of the night to cry only to find that your husband is also awake. He’ll be crying too. You’re about to go through many tests. Find the best geneticist. Find the best fetal cardiologist. Write down every question you have. If you think the question may sound crazy, ask it anyway. Get answers and write those down too. After all the tests are complete, they’re going to tell you everything looks good. It seems to be just his hand, but you’re going to be afraid they might be wrong. You won’t feel quite sure until he’s born. You’re going to have a lot of sonograms. If they’re so sure it’s just his hand, why all the sonograms? You’ll feel uncertain and scared, so get support. You’re now part of the “limb difference” community. Check out the Lucky Fin Project, Born Just Right and Living One-Handed among other great resources. You’re going to spend your 40th birthday in the hospital because there will be other pregnancy complications. It will be six weeks until your due date but guess what? Surprise! You’re going to have your baby boy. They were right. It is just his hand. He’s beautiful. The best birthday present you will ever have. And to think you spent all that time worrying. He’s perfect. Perfectly imperfect. Aren’t we all? When you bring your son home from the hospital your daughter will be almost 3. She’s not even going to notice his missing hand at first, even though you tried to explain it to her in advance. When she does notice, it’s going to be a non-issue. She’s going to be crazy in love with him, and he’ll be crazy in love with her. When your little boy becomes a toddler, he’ll already amaze you with all he can do. Watch out, he’s going to be a climber. You’re going to have to take the handles off the lower kitchen cabinets because he’s going to climb on the counter when you turn your back for five seconds. When you take him to the park he’s going to climb on everything and love it. He’s going to play with all the kids and pretty much all the kids are going to ask about his hand. Most will accept it when you tell them he was born like that. Some will be afraid and run away. He’ll be too little to notice but it’s going to sting you… and you’ll tear up when he runs away, blissfully unaware, to climb and play some more. When your boy is 3 and a half, you’re going to be tucking him in one night and he’s going to start softly crying, his little lips will be turned downward, heavy with sadness. He’s going to tell you he doesn’t want his special hand anymore. He wants his fingers to grow, and he’s pretty sure “they really, really will grow, Mom.” His fingers aren’t going to grow, but you’re not going to have the heart to tell him in that moment. You’re going to tell him you love him the way he is. Aside from that, what can you do but hold him close and let him express everything he’s feeling? When he finally falls asleep your tears will fall. You’ll realize this is one of many things to come that you can’t fix for your child. When he’s 4, your beautiful little boy will tie his shoes by himself — with one hand no less. You’ll realize that this simple act will inspire you and others. The pride, the joy, the loving and knowing he’s yours will be remarkable. Even at a young age, if he can find a way to do something, he will, and he’ll practice until his goal is realized. It’s almost as if something deep within is driving him further. Your son is going to love basketball. Even at just 5 years old, he’s going to become good at it. Shockingly good. He’s going to want to play every day — any free moment he can. He’s going to become best buds and kindred spirits with a college student named Kevin Laue. Kevin is the first person partially missing his left arm ever to be recruited with a full scholarship to a NCAA Division 1 basketball team. Not unlike Kevin, your little boy will have seemingly unstoppable determination. Photo by Ned Dishman So breathe. It’s going to be OK. It’s going to be better than OK. This is the beautifully messy, imperfectly perfect life you’ve been given, and you won’t want to trade it for anything. The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.