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The family of Mason Daniel Robinson uploaded a photo
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The family of Mason Daniel Robinson uploaded a photo
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James Ord posted a condolence
Thursday, October 6, 2022
Had the pleasure of running in a Team Triumph event with Mason...a true honor and privilege to meet him and his family. Deepest sympathies and thoughts.
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Grandpa & Grandma Mattson posted a condolence
Wednesday, October 5, 2022
We are so proud of you Mason and the wonderful person you've become and how totally inspirational you have been to us and all who met you. YOU ROCK! Your words were not legible but for anyone who really knew you, those beautiful blue eyes and awesome sweet smile let us know what you meant to say. Loved your smile when we watched you, Sarah and the many people who took part at your side during your outdoor races. You sure had a way to let us know how you felt and enjoyed your sense of humor. We are happy that you are now free from all that held you bound. There is no time in heaven so when we see you again it will not seem very long of a separation. Our lives will not be the same here without you in it. You will be missed and always in our hearts.
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Kim posted a condolence
Tuesday, October 4, 2022
Mason (and his mama Sarah) will forever hold a special place in my heart. We still joke about the day that my oldest son Jacob said "look mom it's your favorite kid" while pointing to Mason.
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Allison Seel posted a condolence
Tuesday, October 4, 2022
I first met Mason in 2016. We were at Walmart with our daughter Abby and saw Mason in this awesome wheelchair. So being the awkward people we are, we stalked Mason and his Mom. We finally got the courage to go talk to them. We were so happy to have made such an amazing young man. He truly was a ray of sunshine. Fly high with the eagles.
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Carter Robinson posted a condolence
Monday, October 3, 2022
I would describe Mason as the strongest superhero someone could ever meet. Mason was a very strong fighter that never stopped fighting, after all the painful struggles Mason had in his life, he would always find a way to fight through it. I think that mason fought so hard and kept hanging on so that he could touch as many hearts as he could. I will miss him vary much and I can't wait to see him again.
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Jenna Miller posted a condolence
Monday, October 3, 2022
Every moment with Mason was to be learning gentle grace from above. Mason with us was to see Ephesians 4:2. Be completely humble and gentle, be patient bearing with one another in love. I rejoice in Mason's complete healing and I am forever grateful for all the he chose to share with us. Forever blessed, Aunt Jenna
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Melonie Brescia posted a condolence
Monday, October 3, 2022
It's impossible to choose a single memory from the last 6 years. Instead, I'll share what it was like to "work" with Mason. He greeted me with either smiles or grumbles if he he wasn't still sleeping (typical moody teenager). If he was asleep, a quick boop of his nose would let me know how sleepy he was. Mason dictated what activities we would do each day. He enjoyed being pushed around the house in his pea pod chair. We would listen to music and he had to endure my off key singing. He loved water and relaxing by his water wall. He demonstrated his extreme flexibility and ninja skills multiple times throughout the day. Becoming fluent in the language of Mason has been a gradual process. For someone who didn't speak, he sure had a lot to say! Mason did what he wanted his entire life. If it made sense medically, it didn't apply to him #masonslaw. If he didn't know you or didn't want to participate, he would "fall asleep." He also liked to hold his breath when new doctors tried to examine him. He was funny and always made me laugh and smile. Mason showed me what pure, unconditional love is. I was meant to be his nurse and friend. I believe I was brought to the family by God. My purpose was to be his nurse and Mason's purpose was to bring me closer to God. We read books about Heaven, he knew what beautiful eternity was waiting for him. I am so happy for Mason to be healed and at peace. I look forward to the day we will meet again in Heaven. I expect a huge hug and for him to ask me why I was always so loud!
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Auntie Reetz posted a condolence
Monday, October 3, 2022
Mason - I've always thought of you as our little Miracle Man Mason. You were such a fighter and beat so many odds. Doctors would say you'd never do something and you'd show them otherwise … guess they didn't know who they were dealing with … LOL We didn't get to spend a lot of time together but the time we did was special. Snuggling with you in Montana and having special Mason / Auntie Reetz time in Arizona reading some of your favorite stories. Times I will treasure always. Having you in our lives was such a blessing and you will be dearly missed. Until we meet again my Miracle Man Mason … All my love
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Marie Burgess posted a condolence
Sunday, October 2, 2022
Mason, You and your Mom have been a big support for my family. We looked to you to see the possibilities of what Harveys life could look like. Full of love, fun and snuggles of course! Your Mom has given so much, even to us. She made us a cool special cake and have us your cool bike after you outgrew it. Thank you Mason for sharing your heart with us. Give Harvey a hug for me. Love, Marie The Burgess Family
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Shannon Moore posted a condolence
Sunday, October 2, 2022
I remember the time I came to visit and I learned how your mommy made your food. I was able to do the same for my own boys after that. I am so glad I got to know you in person. You remind me so much of Nico and Byron. Fly high little angel.
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Grandpa and Grandma Robinson posted a condolence
Sunday, October 2, 2022
Mason has always totally amazed us for 18 years. We couldn't have been prouder as we watched him learn and accomplish so many things. Things that we take for granted. We cheered when he rolled over. When he could pick his head up and hold it up by himself for a period of time. To work so hard to get his hands up to touch a keyboard or buttons to make sounds or lights to flash. When he use his eyes only to move a computer curser to his apps, to words or phases, and to movies or his games we could hardly comprehend how big that was for him! He loved this Halloween game where he'd blast the ghost's that popped up all over the screen and it was so exciting to see him interacting with them with his eyes - playing! That will always be one of our favorite videos of him. We loved when we'd go visit, he'd hear our voice and turn our way. We will miss kissing those soft cheeks and running our fingers threw his hair. I always said "see ya next time" and those were our last words to him on our last visit. We still mean it cause we both know we will be together again some day. Love you always Mason ❣️
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Barbara posted a condolence
Sunday, October 2, 2022
I met Mason at the 3 or 6 month High Risk Infant Screening. He had not yet had an MRI to diagnose the cause of his seizures. At the next screening, your parents had just found out about his lissencephaly and schizencephaly. I had been practicing as a medical speech pathologist for six years. Mason was my first patient with these diagnoses. I worked with his communication and swallowing for the next few years before the Air Force transferred your family to Arizona. Mason taught me several things. I believe the most important one was that a diagnosis did not always give a prognosis. Early in one's career it is easy to believe medical doctors when they give 'expectancies'. Mason consistently exceeded and proved providers across the country wrong at each turn. He did not do it alone, your family pushed for the best care and followed a track full of hope. Second, Mason taught me to think outside of the box, pushing for quality of life. After his big seizures, he would lose muscle tone and control. This made it very difficult for him to swallow safely. We trialed electrical stimulation and positioning strategies, as well as modifying the size of the bolus and allowing extra time for a second swallow to clear any residue. Your mother had noticed his interest in fresh chocolate chip cookies, which she would bring in for therapy. Mason communicated his enjoyment of warm chocolate chip cookies with his entire body! The staples of dysphagia therapy (thickened liquids, puddings, applesauce, ice chips) did not come close to the progress he made with correct positioning and small pieces of chocolate chip cookies. I would never have thought of trying a soft solid with him without your mother encouraging it. Finally, I believe Mason taught me to be a better speech therapist. He provided me with information and skills to help me work with families who followed him. Over the years, there have been at least a dozen families I have cared for either with communication (alternative and augmentative communication devices, gaze systems, simple switches) or feeding (oral care, modified diets, tube feedings). Mason was the trailblazer. The tube feeding cookbook, medications, diets, financial hoops for adaptive equipment, and working out how families could get wheelchair vans were all areas I was able to share information with families to help children get the support and services needed. Mason's big eyes and soft blond curls and his occasional laughs during our time together are details I remember so clearly. My own daughter is only a few weeks younger than he is. Eighteen years is a big deal, especially for every challenge Mason has gone through. He is beyond blessed and those who have been a part of his journey are lucky to have learned from him. Barbara
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General Rand posted a condolence
Sunday, October 2, 2022
Sarah, Aww, thank you for reaching out. You are the best! Not sure I can claim that I have invested in Mason's life, but the impact he and your family have had on my life is very significant. I vividly remember the first time I met you and Mason was at the Mar 2013 team triumph race in Tucson. Can't remember if we did 5k or 10K (I'm claiming it was a 10k). I remember you expressing some concerns about whether we could finish it, and I assured you that nothing could prevent "team Mason" from finishing….and we did!!!! To this day, it remains one of my most cherished accomplishments because I was so inspired by you and Mason. Attached are two pictures that capture the event, as well as my emotions about the impact Mason has made on me. Life isn't always fair, yet when I think of Mason and the Robinson family, I am reminded to be grateful for all the blessings, big and small, that come my way; I am reminded to not be a complainer; and I am reminded to try and "pay it forward" and be more of a server than a taker. The picture of the 12th Air Force coin (my personal three star coin) in Mason's hand is framed and is proudly on display in my home office. I have always had this picture on display…some nine years after the event. "Enjoy the little things, for one day you may look back and realize they were big things." Baba
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Yolanda Crosby posted a condolence
Sunday, October 2, 2022
(Copied from an 18th birthday tribute given to Mason) Greetings!! I have learned so much from Mason! But the one thing that sticks out the most is how love can conquer all things. Mason has beat all odds because he is surrounded by so many people that love and adore him. Happy Birthday my sweet Mason!!! Love you! Yolanda
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Marion posted a condolence
Sunday, October 2, 2022
(Copied from an 18th birthday tribute given to Mason) I would have to say what Mason taught me was the power of pure love. Mason is who and where he is today because of the incredible love and support of his mom, dad and siblings. It was a joy to see him in his home bathed in this wonderful family! Marion Rudasill
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Steve posted a condolence
Sunday, October 2, 2022
(Copied from an 18th birthday tribute given to Mason) Mason, thank you for letting me spend some time with you as your chaplain. I am honored to serve you. You teach me that I am totally dependent on God for everything. Every bite of food, every breath I take, is given to me by my Father in heaven. I depend on God for my safety and well-being. I am dependent on Jesus for love, for life now and forever. Thank you. Chaplain Steve Alsum
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Jackie Leingang posted a condolence
Sunday, October 2, 2022
(Copied from an 18th birthday tribute given to Mason) In the short time I have worked with Mason and his Mom and sister, I have been encouraged and always leave feeling like I received a measure of goodness beyond what I could give out of my caregiver bucket. Mason has a gentle nature and is receptive to his Mom's supportive touch and vigilant assessment of his how she can offer good posturing to support his breathing. Also his Mom's positive means of talking about his week and never airing a complaint about his chronic seizure condition, I believe, is picked up by this young teen as a mater of fact situation in the everyday life in the Robinson home. Mom has shared the blessings that have come into their lives over the years, as Mason's journey has taken twists and turns, but always surprising them that he has made it through! The scripture from Matthew 18:10 comes to mind regarding Mason's journey through this life. Take heed that you despise not one of these little ones; for I say unto you that in heaven their angels do always behold the face of God, our Father who is in heaven. What a blessing to be able to work with Mason and to be a part of his life and his family's journey with him. Thank you for allowing me to be a part of this celebration! Stay strong in the Lord and in the power of His might, Jackie Leingang
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Randi posted a condolence
Sunday, October 2, 2022
(copied from an 18th birthday tribute given to Mason) Mason, As you approach your 18th birthday, I can't help but reflect on the amazing you, and the profound impact you have had on my life. As you know, I met you through my job! Your mom's friend Mary asked me one day if I worked with children that needed support to learn to eat, and I enthusiastically responded YES! Your mom got a referral, we made an appointment, and then there I was, sitting in your living room gazing upon a little boy without fully understanding that at that moment, the entire trajectory of my life was going to change. Because you see, yes, I did work with children that needed support to learn to eat... but many of them already did... but you didn't. I did work with children that needed support to communicate... but many of them already had some form of language expression... but you didn't. I was experienced, but not seasoned. As I sat in your living room looking at you asleep in your chair and listening to your mom share the story of Mason, I wondered to myself if I was the right person for you? I sat doubting myself, my skills and my abilities. And then I asked one question, and the answer your mother gave me changed my life. I said something to the effect of, "what are you hoping for me to be able to support your family with?". At the time, I think the question was more for me than your mother as I honestly didn't know where to start. But then your mother responded, "We just want to find ways to involve Mason in as many parts of our life as possible. I love to cook, and I just wish I could share that with Mason". From that answer, two things occurred. One, my brain finally registered that life isn't about standardized scores and continual progression towards a developmental norm. I needed to reframe what it meant to me to do my job. How can I write goals to support functional family involvement? In what ways can I work to support a family unit as a whole and find the WHY? Why are we doing what we are doing? How do I make it fun, make it functional, and make it mean something! It seems crazy to write this now as my entire life post this moment has been devoted to this concept, but pre Mason and Sarah, I was not as acutely driven to work like this. Every minute I was working with you I was learning as much as I was teaching, maybe more. I was learning to look for and read the subtle communication you so clearly provided. I was learning how to adapt and modify and adapt again activity after activity, searching for the ‘WHY', and it was beautiful when we would find it. Your subtle smiles, your vocalization and body movement to communicate to me whether you were diggin' it or not, and watching your face light up when we found strategies that supported you to really engage in activities with your parents and siblings were magical. The more we unlocked, the more I wanted to keep finding new ways for you to do more and more and more things with your family. This led us down many paths, with one of my favorites being your mom and I running together with you as our captain in many races. Again, you brought a reluctant me along for the ride, doubting myself, a non-runner, that I could do it. But I adored you, and your eyes told me I could do it, and I believed you Mason. So we did! Your mom and I ran more times than I can remember, always coming in just behind our captain Mason! I can not help but smile everytime I think about those years! Back to the second part of what your mom said, she loved to cook, and wanted to be able to share that with you. I looked at you that day - your skin was pale and you would get sick every time you were fed liquid formula by tube. I knew in my heart and mind this was: a) not a way to live, and b) would not support sustainable long-term health. I mentioned to your mother that food the family eats could be blended and be used for tube feedings. I wondered if maybe that could be a place to start...and you know your mom...she ran with it! At that point in my life, I was not as experienced with blended formula as I am now "post Mason", so I connected your family with Marsha Dunn Klein who wrote the literal book on homemade blended tube feeding to give you the best person possible. Your mom jumped right in, and within 2 weeks she was roasting, blending, freezing, and feeding you food with amazing results! Your stomach seemed to feel so much better, the color in your face changed, and you didn't seem to be sleeping as much. Your mom began researching natural pairings of foods and supplements, and within a short period of time your medical team was asking her for all of her secrets (kudos Sarah)! Your health was improving, and some of the medications you had needed for years were no longer needed! Now that your tummy was feeling better and your mom was able to share some of her love for cooking with you, it was time to jump into round two - tasting! By now I was learning fast, reading your communication along with support from your family to know when we were on the right track. Working together, we steadily moved towards safe tasting of your mom's sauces, and foods your sister Ana would lovingly pick out for you that she knew you would love. She was usually right! My heart would burst watching your family and you explore family foods, tasting them and telling us what you thought. Along with your enjoyment, it was truly magical. Mason, I credit you and your amazing family for helping shape me into the therapist and human I am today. As I continue to have the opportunity to work with new families who "just want their child to participate in as many activities with them as possible", you taught me the "just" is the BIG ask, the BIG goal, the MEANINGFUL goal. For that, I am profoundly grateful. Thank you for giving me the grace to learn alongside you and your family and to believe in myself to think outside the box and to appreciate ALL the moments. You changed my life... THANK YOU! Love always, Randi
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Stephanie posted a condolence
Sunday, October 2, 2022
(copied from an 18th birthday tribute given to Mason) I have learned how to ward off therapy sessions by pretending to be sleeping....and to catch one eye opening as I'm leaving....to really make sure I am leaving! He has taught me the power Of a shoulder shrug Of a head nod And one open eyeball.... Thank you for teaching me about another kind of love and sharing your family with me Mason. Always, Miss Stephanie
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Emily posted a condolence
Sunday, October 2, 2022
(copied from an 18th birthday tribute given to Mason) I was lucky enough to become Mason's OT early on in my professional life. I'm probably a better therapist now than I would ever have been if Mason hadn't come into my life. When I first started working with Mason I wrote goals like I had been taught in school. I could probably dig them out and they would probably embarrass pretty seriously now. But i did what i thought I was supposed to do.I thought about the next developmental steps from where Mason was and wrote goals about him reaching the next one. Still on some level believing that the point was getting all kids through the milestones, we just had to go step by step and all head down the same road. I was focused on getting him to Do the next thing on the list. I had not yet really learned how useless conceptions of typical development really are , I didn't yet understand how blinding they can be when working with kids on their own unique trajectories, ones that no text book can really describe or prepare you for because they are specific and unique and one of a kind . That not everyone is on the same road. That this isn't even desirable, it would be so boring that way. Working with Sara and Mason taught me so much about joy. About how centering pleasure for the child in front of me and for their parents leads to therapy that enhances lives and strengthens connections. This idea, that parents have the right to take immense joy in their child and that children have the right to find joy and pleasure in their body no matter how different that body is from what we have been taught is "typical" was a gift that Sara and Mason gave me. I did not offer them guidance to finding that joy, they had it long before I stumbled, new and inexperienced, into their lives. But by showing me the power of that joy they planted a seed and it has grown to be the center of my practice. I hope o have been able to guide some of the families I have worked with since I'm this direction. I don't think I offered a whole lot of real skill to Mason or his family. But they gifted me with many for which I am deeply grateful. I loved working with Mason. And back then as a new therapist I remember feeling a little guilty about that. Like I was there enjoying myself but not doing much for Mason. Now I know that loving being with him was the one of the best things I did as a therapist and one of the best things I can offer any of my clients. Finding connection and joy isn't a guilty side benefit of therapy, it is the point. I remember laying on my back cuddled with Mason in a dark tent we created with my own infant along for the therapy session cuddled between us and all three of us looking up at the flashlight making bright spots above our heads and watching as they moved. I remember messy finger painting sessions, floating in warm swimming pools, and just having days where we held hands when anything else was just too much that day. Mason is so lucky to have the family around him that he has he shines with their love. And his family, and all the rest of us who have had the pleasure of knowing Mason, are so lucky to have him, we are lit up by his love and his presence. Happy Birthday Mason. Love and deep gratitude, Emily Areinoff --
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Aunt Amy posted a condolence
Saturday, October 1, 2022
My sweet Mason, I was there celebrating/helping with your sister Paige's birthday party when you scared us with your first known seizure. That was a very scary day, and one I will never forget. It was the start of our journey of learning about Lissencephaly. You were my reason I stayed in my Cytogenetics career for over 14+ years. You inspired me to be a part of giving answers to kids and families just like yours. At my work desk, I had a collage of pictures of you which I still have today, and I looked at those pictures often. They reminded me that there is a patient and family behind every specimen waiting on the other end for those results. Your sweet face kept me going on those difficult and challenging lab days. Thank you! You were also the cutest "Honorary Ring Bearer" in our wedding party. You made that day very special, and we are honored that you could be apart of our big day. Thank you! Lastly, Mason, you taught me that life can throw you some difficult and challenging days but no matter how difficult, stay strong and fight cause "Don't Worry About A Thing, Every Little Thing Is Gonna Be Alright". Thank you for the wonderful sign you sent from heaven above. It was sent at the most perfect time. Thank you! We love you so much Mason! Thanks for inspiring everyone you met along your 18 wonderful years here on earth. You will always have a very special place in my heart!!
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Dan Robinson posted a condolence
Saturday, October 1, 2022
We loved to take naps together, me being able to go fishing with all my grandsons, and watching lots of TV and movies together.
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Ragan Goering posted a condolence
Saturday, October 1, 2022
I loved when you all would come visit and when Mason was at Grandma and Grandpas and when he would hear Grandma's voice and smile and be looking around. I loved seeing him smile. I love you all and I am praying so deeply.
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Carol and Dwane Whitson posted a condolence
Wednesday, September 28, 2022
We first met Mason at a Christmas gathering at the home of his grandma and grandpa, John and Pat. He was just a little guy, in his car seat. He was so beautiful with his so-blue eyes and open, loving expression. He touched our hearts then and has ever since. He will always touch our hearts and we are so grateful to have known him. Thank you Sarah and Mark for so generously sharing Mason with us over these years. While we seldom were physically with him, I think he made us more loving and accepting and gave us a better understanding of the special needs community. We were introduced to other families through Facebook posts, were sad for their losses. We have followed Mason's ups and downs and cheered him on during his races, loved seeing him smile and respond to those he loved. Thanks to those who sent pictures and posted on Facebook. We have been so humbled to be a part of this extended family. Love you all!
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Cynthia Clare posted a condolence
Wednesday, September 28, 2022
Mason, my man, you made my heart smile. Every time I walked into the room where you were. Your perseverance, to stay healthy and your love of life was amazing. You showed me what true Meaning of acceptance is. You have a beautiful family, who is blessed to have you, and you were blessed to have them. I know you're up in heaven, showing off your skills and radiating your love. You will always be in my heart, and I will always cherish the memories of being your nurse. I love you big guy.
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Cari Carpenter posted a condolence
Tuesday, September 27, 2022
We first met you, Mason, when you were just 5 months old at a Lissencephaly gathering. I knew then, and you have since proved me correctly, that you would have a profound impact on those around you. Although your family was new in this journey at that time, they have been remarkable warriors on your behalf and you have shown like a bright star. I do wish I lived close enough to attend your memorial in person, but my thoughts will certainly be there! Love, Cari Carpenter and Chris VanTuinen
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Crystal Weaver posted a condolence
Tuesday, September 27, 2022
I will never forget the smile I got from Mason at Zach and Paige's wedding. I'm grateful I got to meet him, and even though I didn't get to spend much time with him he was always in my heart, and always will be.
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Kelsey Donnelly posted a condolence
Monday, September 26, 2022
When we first met Mason and his wonderful family in person, it was Halloween a few years ago. I had my daughter dressed up and ready but she got sick on herself on the way. I will never forget their kindness as his momma helped me clean her up and Mason let Teagan use one of his comfy mats to lay on . His heart was so big, and his love for everyone was constant . We love you sweet Mason . Rest in paradise and keep the Reggae tracks flowing Bubba
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Mary and Bob Hartnett posted a condolence
Monday, September 26, 2022
Sarah, Mark and family there are no words I can say that will ever ease your pain but my hope is all the memories and adventures you all shared with Mason will bring you peace. I can't remember how many times Bob and I would drop Mel off and we would go in to see Mason and while he smiled for Mel as soon as he heard other voices he pretended to be asleep! Sweet Mason you made us all better people for knowing you and loving you! Rest in the arms of Jesus!
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Candi Robinson posted a condolence
Saturday, September 24, 2022
I enjoyed hanging out by Mason and we talked….well I talked and he listened and he smiled that special smile.
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Hayley Bowen posted a condolence
Saturday, September 24, 2022
Gosh where to start.. Mason was such a special dude! I enjoyed him so much. He was always down for anything…want to work on trunk and head control while we try to entertain (or annoy ) you? Want to do a 5k? I'm not sure if he really wanted to but he always did..probably not for himself but for us. Mason will always be remembered ❤️
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Bumi posted a condolence
Saturday, September 24, 2022
My sweet Mason, you taught me to be a better version of me in so many ways as your nurse and a mother. I draw inspiration knowing that if we believe mountains can move. You lived your life against all medical explanations, on your own terms without any medical justifications. You make me understand the power of divine purpose that every human is made to fulfill a purpose in life. Thank you Mason, you'll forever be in my heart ❤️.
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Brandy Fadenrecht posted a condolence
Saturday, September 24, 2022
You changed reggae music for me forever. Along with every other lesson you taught me. My heart will be full of you always. Still feels a little empty. You taught me love doesn't need words. It's such a empty feeling missing you. Helps with the love and memories to keep it full. Thank you for changing our world.
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