Vanessa Garcia

@vanessa-garcia | contributor
Vanessa Vaughan is a work-at-home-mom of three children. It is the journey of her son, Braxton, that thrust her in to the special needs world as Braxton was undiagnosed for two years before finding a rare diagnosis of Rubinstein-Taybi Syndrome. His older sister, Aileen, has been amazing with her little brother and has her own struggles with ADHD and Anxiety. Brooklyn is the youngest who joined the family in January 2017. Through Braxton’s diagnostic journey, Vanessa met a local non-profit, U.R. Our Hope, that specializes in helping families with Undiagnosed and Rare medical disorders and she now serves on their Board of Directors.
Vanessa Garcia

When a Child Who Has Special Needs Asks If the New Baby Will, Too

Several years ago, the thought of having another baby after all we’d been through with our son Braxton was simply out of the question. I was too scared and nervous to even entertain the thought. As friends of ours who also have children with special needs began expecting a child, I started to think more about the possibility. I asked them questions about how they felt, if they were doing more in-depth genetic testing from the very beginning this time, and ultimately admired from afar. At that point in time, I decided if we did get pregnant again, I was going to do everything possible not to be blindsided. I was going to ask for more testing up front, so we would know what to expect this time. Going through an uneventful pregnancy, then being told moments after birth that “something is wrong” with your baby and waiting nearly 2 years for answers is an experience I never wanted to go through again. But this summer, it happened. I found out I was pregnant. We had been talking about having another baby for quite some time, and finally our prayer was answered. At my first appointment, I was 8 weeks along, and the doctor explained she wanted to go through everything as if it were my first pregnancy, to be sure she didn’t forget something or assume I knew something I didn’t. She began explaining our options for the first trimester screening. She told us about the standard testing they have been doing for years, and explained its efficacy in determining if a child will be born with Down syndrome. There is a new test that can predict with approximately 96% accuracy, and will also tell you the baby’s gender by 12 weeks. And there is another test that can check for a variety of other conditions. I looked over to my husband, and knew we were on the same page. When we spoke after the appointment, my husband asked if I wanted to do the in-depth testing, and surprisingly, I said no. He then told me he felt the same way. We decided that knowing wouldn’t change anything. We’ve already got the resources and the support. If, by chance, we found ourselves on the journey again, we wouldn’t be blindsided this time. And finding out wouldn’t change whether or not we would keep the baby or make us love her any less. I realized we were in a very different place than we were several years ago, when we thought we’d ask for every test under the sun. I knew that with my husband and the systems we had in place, there was nothing we couldn’t face. However, it wasn’t until several weeks later that I realized not everyone was on the same page. Disability affects the whole family. Disability is a part of many conversations in our household, and my daughter is very attuned to the challenges we face with Braxton, and more recently, with her as well. She was diagnosed with ADHD in December of 2014, and some aspects of the condition have been debilitating for her. We have been working hard to get her the support she needs medically and in school. She is very aware of the difficulties she’s faced, and often feels like an outsider, despite our best efforts to build her up and make sure she is included. Some time after I told her she was going to be a big sister again, she came up to me while I was cooking and said, “Mom, do you think the baby is going to be born like Braxton or like me?” At first I thought she was asking if the baby was a boy or a girl, or maybe if the baby would have her tanned skin or Braxton’s light skin. “What do you mean?” I asked. “Do you think the baby will have Rubinstein-Taybi syndrome like Braxton? Or do you think she will have ADHD like me?” I was completely caught off guard, and said something like “Oh, don’t you worry about that. Baby is going to be just fine.” She seemed content with my answer, and scampered off to watch TV. She’s asked me some variation of this question at least four more times, and every time, I am without the right words to say. Last night, again, “Mom, do you hope this baby is normal when she’s born?” Again, I am less than eloquent. “Baby girl, we are all born with our own special gifts, talents, and difficulties. We don’t know what to expect when the baby is born, but I promise she’s going to be OK.” I have struggled with the disability conversation with my daughter from the beginning. How do I tell her about her brother? How do I make sure she doesn’t feel left out? What do I do when she thinks all the attention is on him and not her? We have had some struggles, but for the most part I seem to have found the right words, and she has been a huge advocate for herself and for her brother. But now I am at a loss again. Do I reassure her that the baby will be fine? Or will that make her feel inferior because the baby is “normal” and she has a diagnosis?  I have tried to tell her there is no such thing as “normal,” that we are all born with our own special quirks and that’s what makes us all so unique. For now, she is appeased. She is excited to meet her sister. She kisses my belly every night and talks to her sister often. Hopefully I can find the right words to put my sweet girl at ease the next time she asks. Hopefully I can help her find her way to a place of acceptance and move past whatever mountain seems to be standing in her way. This story originally appeared on Journey Full of Life. We want to hear your story. Become a Mighty contributor here .

Vanessa Garcia

Thank You to My Child's Occupational, Speech and Physical Therapists

Five years ago, four people entered our lives as strangers. I knew nothing about them, I knew nothing about what they did, I only knew that our doctors in NICU wanted us to see them all. We were new to this world of therapy and special needs. We didn’t see what all of the doctors saw. I was hesitant to let them in our home, and trying to fit them all in to our schedule was stress upon stress. The first to arrive was our physical therapy supervisor, Mary Elizabeth. She was kind and patient. Most importantly she gave me hope. It wouldn’t be until years later that she told me in the early days she wasn’t sure Braxton would make it and she wasn’t sure what she could expect from him. Nevertheless, she never let that show. She never gave up on him, and she guided us on this journey. She never treated him like a terminally ill child. She helped us build the rest of our team and ensured Braxton received the medical care he deserved. I’ll never forget how with one phone call a genetics appointment scheduled in November was moved up to August to start us on our diagnostic journey. When the switch finally flipped for Braxton and again when we got our diagnosis and learned Braxton was definitely not terminal, she continued to make sure we were on target developmentally and set goals to get Braxton to reach higher and higher. At that first visit she told me it would be her partner, Gil, coming to work with Braxton. When Gil arrived, I was hesitant because apparently I had seen too much Oprah and I’ll admit I was worried about having a male in my house when my significant other was away. But, that was pretty foolish. Gil is a physical therapy assistant, but let me tell you, he has been an invaluable member of our team. “Assistant” is so misleading. With the years of experience he’s had, there is no one else I would have wanted on our team. He was so gentle and patient with Braxton. And in his spare time he likes to dress up as a superhero – who doesn’t want a superhero on their team? We made slow progress at first, but Gil always pushed Braxton forward. I have a 5-minute video of Braxton trying to roll over. And video of Braxton up on his hands and knees rocking back and forth trying to crawl. Five years later and Braxton is knocking Gil over as he rears up and smacks him in the chest wrestling with him. He is walking independently, climbing stairs – well, climbing everything really! The progress he has made is truly amazing. Shortly after physical therapy started, we still did not have a speech therapist on board, and Braxton needed help with feeding. I had no idea that speech therapists could work on more than speech. Mary Elizabeth came to our rescue and called in a friend and colleague. Lesli didn’t have any openings at first, and I remember she came out on a Saturday to do Braxton’s evaluation. Within a few weeks, she had a space open up for Braxton (or she made one), and we began working on bottle feeds. With her help, my daughter Aileen got to live out her big sister goal of helping to feed her brother. Bottle feeding did not last long as we learned Braxton was still aspirating (swallowing liquid in to his lungs), but we slowly worked back up to it, until Braxton just decided he didn’t want a bottle anymore. When we introduced baby foods, Braxton’s progress was miniscule. We celebrated bites and when he ate half an ounce. Now, Braxton eats 16-20 ounces every meal. You would never guess he was a kiddo with such great feeding difficulties. We had a few regressions in there, but Lesli never gave up. She never let us give up. We continued to press forward, and here we are with a hungry little man on our hands. We did also work on speech, and although we never really got any words from Braxton, we started on the road with Alternative and Augmentative Communication (AAC). Braxton is now using an iPad with Speak for Yourself to communicate with us. He is still not using it as much as we’d like, but he’s made really great progress. The last to join our team was Elizabeth, our occupational therapist. OT is apparently really difficult to find. Thankfully, OT and PT look very similar in the early months, so we weren’t in too much of a rush initially. Elizabeth has always been super patient with Braxton. Fine motor skills are definitely one of Braxton’s biggest struggles, and his progress has been slow. (It took three years to get him clapping!) But Elizabeth never seemed discouraged or frustrated. She worked with Braxton at his pace, always pushing him a bit further out of his comfort zone. And she has always spoken to Braxton as if he understands everything she is saying and expecting more from him because we knew he was capable of more. Braxton has made a lot of really good progress with his fine motor skills and we know he is able to do so much, but whether he actually wants to or will perform is a different story. We know he can build block towers, but he prefers to pretend he’s going to put the block on top and then throws it at the last second in protest. He has certainly kept Elizabeth on her toes and she developed some super quick reflexes. After having worked with this incredible team for the last five years, this week has been pretty difficult for us as it has all come to an end. Braxton is starting kindergarten next week and unfortunately, our team can no longer see him as our schedules just don’t match. When we moved outside of their service area, they all moved with us to stay with Braxton. So, I know if there were any way to work it out, they would. But, sadly we weren’t able to make it work, and we have had to say goodbye to everyone this week. As I prepared myself to let them all go, I thought back to the days when we all started together. How worried we were. How clueless we were. Over the years, they became part of our family and were no longer strangers. I’ve learned about their families, met their children, commiserated together over school woes, cried together, and laughed together. They’ve watched my little man grow from this small baby who didn’t even fill up a couch cushion to this wild child climbing on tables and chairs, running away to hide from therapy. Every week, twice a week, for an hour each visit they’ve been in our home. It might not seem like much, but it adds up quickly and as the years pass so much life has been lived. I am forever grateful to this team of people who helped us with our son and taught us the things we needed to do to help him succeed. They helped to empower me and showed me how to be an advocate for my son. As we move forward to this next chapter, I look forward to the progress Braxton will make with our new therapists thanks to the strong foundation we have built with this one-of-a-kind team.  Thank you all, each and every one of you for all that you have done for Braxton and our family. I hope the small tokens we gave you will remind you of Braxton and remind you on the hard days that someone is grateful for you and you are making a difference.

Vanessa Garcia

Rubinstein-Taybi Syndrome: What I Want Parents to Know

For the past several years, I’ve shared various medical facts about Rubinstein-Taybi syndrome (RTS) to raise awareness of this rare condition, especially on World RTS Day (You can read those posts  here  and  here .) While the medical facts are extremely important to know and understand, I’ve also realized sharing our life experiences is equally important, since people will see what life can be really like for individuals with Rubinstein-Taybi syndrome. So this year, I want to go beyond the medical facts. If you’ve followed our blog and Facebook page, you have great insight into our lives and our journey with Rubinstein-Taybi syndrome. For those who are new to our journey or if you’re a parent learning about your child’s diagnosis for the first time, here are just a few things I want you to know about RTS. Rubinstein-Taybi syndrome isn’t terminal, but it is lifelong. Because of the diagnosis, there are challenges our children will face their entire lives with communication, gross motor skills, dexterity, endurance and living independently. But this isn’t something to be pitied. Our children are resilient. They learn to experience their world in ways we might not have ever imagined. It might take them longer to get there, but they do attain skills like walking, running, jumping, climbing and much more. Our children are capable of so much. When I first learned about our diagnosis, words like cancer, developmental delay, musculoskeletal issues jumped off the screen. I immediately began thinking of all the things our son, Braxton, would never get to do. He’d never throw a baseball with his dad, never ride a bike and never play on a playground. But when I joined a Facebook group for families of children with RTS, I found hope. There were families who had children who played baseball, swam, ran and were Special Olympic athletes. I realized that despite what the research said, Braxton had endless opportunities. And look at him now — Braxton played baseball with Miracle League this year, he’s learning to ride his AmTryke tricycle, he loves being in the water and he enjoys swinging with his sister. Our children exude love and happiness. No, not every day is sunshine and rainbows, but most of the time, our sweet kiddo has a smile on his face. Don’t get me wrong, though, Braxton has a temper like no other! I’m willing to overlook that some days when he flashes his big smile and wraps his arms around me for a big bear hug. Braxton knows no strangers. He sees the good in all of us and loves unconditionally. Our son’s medical challenges can be tough and often difficult to handle, especially in the first couple of years when we didn’t have a diagnosis. On top of not knowing what was going on with him, we saw over a dozen specialists, and he had several surgeries and medical procedures. He was hospitalized once for pneumonia, and he was sick constantly with colds, sinus infections and ear infections. But despite these challenges, it does get better! Braxton has been medically stable for the last three years. He’s making great progress, achieving therapy goals and staying healthy. We still have all of our specialists, but our visits are down to annual visits and some doctors have simply said, “He looks great, call us if you need us.” My fears and worries never go away, but they do get quieter. They’re there in the back of my mind, and with every cough, every sniffle and every fall, I wonder if this is going to be the event that turns our world upside down all over again. I hold my breath for a moment, and then I remember to breathe. I can tell you not to worry, but who am I kidding? It’s our parental instinct to worry about our babies. So instead, I’ll tell you that it’s OK to be worried, but don’t let it keep you and your baby from living life. Take chances, hold your breath, but don’t forget to breathe. Follow this journey on Journey Full of Life . Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our  Submit a Story  page for more about our submission guidelines.

Vanessa Garcia

Finding Strength After Your Child's Diagnosis

“Your blood work came back abnormal. These levels indicate your child may have Down syndrome, so we are going to send you for a higher level ultrasound, and we may need further testing like an amniocentesis.” The fog rolls in, and the genetic counselor’s words sound more like the teacher in “Charlie Brown.” I sit there, stunned, mouth agape, thinking, “I’m only 20 years old. I don’t even know how to be a parent, much less the parent of a child with Down syndrome. How am I going to do this? What do I do? I’m not cut out for this. I can’t do this.” I’m brought back to the sound of the genetic counselor’s voice as she’s explaining my “options.” Wait, what? Adoption? Abortion? This is my baby we’re talking about. And in that moment I know, Down syndrome or not, I’m going to tackle this head on. My daughter was born without any complications and without Down syndrome. Fast forward almost five years later. In walks the neonatologist, and she slowly starts to explain, “Your son has some interesting characteristics like a flat nasal bridge, thin philtrum, webbed fingers and a significant heart murmur. On their own, these things aren’t usually anything to worry about, but when they present at the same time they indicate some type of syndrome…”  Cue the teacher from Charlie Brown. I’m speechless. What is happening? I’m vaguely listening to the doctor, and as she tells me he is going to have to be transported to another hospital for further testing, I feel the tears rolling down my cheek. I see my significant other’s jaw clench, tears welling over. Our whole world rocks in an instant. As she leaves the room we look to each other and start the, “What are we going to do?” talks and wonder how we’re going to explain this to everyone. “I don’t even want to say anything about this on Facebook,” he says. We have no clue what is going on. Over the years, our journey has taught me that I possess more strength than I ever thought possible. If you had told me four years ago, after that neonatologist left, that one day I’d be sharing my story and helping others on the journey I probably would have laughed in your face. Me? Me, who didn’t want to share anything with my friends or family on Facebook, would be blogging, giving presentations and helping others? Yea, right. Except, that’s exactly what happened. Somewhere along the way I found the courage to tell our story, and from that has come the most amazing opportunities, friendships and healing. I have now become a mom who can walk with others on the journey and help them see hope even in the most hopeless situations, help them find the strength they didn’t even know they possessed. I don’t pretend to be superwoman, and I don’t want anyone to think that of me either. I’m not superwoman. I’m just a mom. A mom whose love for her child would move Heaven and Earth before giving up. Just like any other mom. A few weeks ago, I witnessed the other side of the coin. I have accompanied families to appointments before, but not a single one jolted me back to that hospital room when the neonatologist flipped our world upside down like this one. I attended a genetics appointment with a family to take notes and help them figure out the next steps after receiving the diagnosis. Only, I wasn’t fully prepared for what happened next. As the doctor delivered a diagnosis I was unfamiliar with, I opened up Google on my phone and began researching then and there. Then, like a ton of bricks, in an article – “This disease is always fatal. Most patients die before the age of 10.” The words blurred together as I tried to continue reading. I frantically searched for “success stories.” No, this can’t be right. I find support groups, blogs, Facebook groups, calling in the troops – this family is going to need incredible support. Then, as quickly as it came, I’m brought back to the room and focusing on the doctor’s words. He hasn’t told the parents yet. He’s trying to break the news easily, and when he finally gets to it, they break down. Here come the tears, the cries of, “How are we going to do this?” “This isn’t fair.” “I can’t do this.” “I don’t know what I’m going to do.” The doctor proceeds to explain more about the disease. The parents are frozen. I step in with some questions. I’m frantically taking notes. When the doctor leaves the room, the parents are visibly shaken. I give mom a hug and tell her she’s not going to have to go through this alone. I share in their grief. I tell her that she is going to have the strength to do this. I tell them to go home, take it all in, cry, scream, break stuff, grieve in their own way and when they are ready we can tackle this, together. A few days later I check in with the family and send them my notes from our visit. I let mom know I’m ready and willing to help as soon as she’s ready. By the next week, the family has started a GoFundMe and Facebook page. Mom has made contact with a doctor in Chicago for further diagnostic testing and to begin participation in a clinical trial. I am in awe of this woman and this family. This mom who didn’t think she could do this has already moved mountains in a short amount of time. I am reminded that strength comes when we least expect it and often when we ourselves don’t think we even have the strength to keep breathing. The love a parent has for a child is the ultimate source of strength. It is the love for my child that kept me going when I thought my daughter had Down syndrome, when I refused to stay in the hospital for the required 72-hours post c-section after my son was transported, when the geneticist finally delivered his diagnosis to us two years later, and it is the love for a child that I have seen move mountains for this family. If you are a new parent hearing a difficult diagnosis for the first time or a seasoned parent entering unknown territory, just breathe. You will find the strength. Follow this journey on on Journey Full of Life. The Mighty is asking its readers the following: 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. Check out our Submit a Story page for more about our submission guidelines.

Vanessa Garcia

I'm Not ‘Jumping on the Bandwagon’ on Rare Disease Day

Through the years, I have become extremely passionate about raising awareness of things I never knew existed until I was affected. Also through the years, I have been criticized for “jumping on the bandwagon” to simply share a photo, a ribbon or a video. But it’s about so much more than that. Awareness is simply the first step to so much more. Today I share with you the criticisms and why awareness is so needed. My child is more than a diagnosis. While I do tend to agree with this sentiment, I also struggle because I know my child, Braxton, wouldn’t be who he is without the diagnosis. The very things I love the most about him are tied into the diagnosis. Braxton’s heart-melting smile is actually an almost universal characteristic of all children with Rubinstein Taybi syndrome (RTS). I love how he gets excited and his arms and body tense up as he moves his arms up and down or in and out. I love his big eyes and to-die-for long eyelashes. I love how he has taught me to slow down and see the beauty in the unspoken, not to take life for granted and how to love unconditionally. He may not have had these characteristics were it not for RTS. Just because I bring attention to his diagnosis does not mean I am demeaning who he is as a person. I want you to see Braxton for Braxton. I want you to see he is a mischief-makin’, rough-and-tumble 4-year-old little boy. But I also want you to know what RTS can look like because one day you might run into a family who lives in doctor’s offices trying to understand what is going on with their child, but no one knows. It took us two long years to find a diagnosis, but we know people who were diagnosed within hours, days, weeks of birth. If RTS were more known, we would have had an answer right away instead of the loud voice of the neonatologist saying our son wouldn’t live more than a few weeks. That in itself is reason enough for awareness. RTS isn’t a disease. Technically, it is. Disease is defined as “a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.” RTS can be the result of mutations in the CREBBP or EP300 genes, which are responsible for making proteins that help control the activity of many other genes. (This is extremely simplified.) Therefore, a mutation in one of these genes is a disorder of structure and function. Unfortunately, the issue is not with the definition of disease, but in the connotation, the meaning implied or associated with the word disease. When most people hear the word “disease,” they think of someone who is sick, dying and searching for a cure. If you use the implied definition of disease, then, no, RTS is not a disease. It is a condition or disorder — but guess what, those words are actually synonyms for disease. You’re just looking for pity. No, actually, we’re not. I don’t want you to feel sorry for me, my son or our family. But I do want you to support the cause. We have met professional after professional whose immediate response after I tell them Braxton has Rubinstein Taybi syndrome is “Oh, I’ve never heard of that,” and these are medical professionals — d octors, nurses, anesthesiologists, x-ray technicians. The very people we depend on when Braxton is sick or needs surgery have never heard of his condition. We want the medical community to know who we are and how to meet our needs. I need someone who understands the risks anesthesia brings to Braxton specifically due to his RTS diagnosis. Someone who understands how to read his x-ray while taking in to account underlying bone issues due to his RTS diagnosis. Someone who doesn’t mistake his silence as rudeness. Awareness is extremely important in receiving proper medical care, services and insurance coverage. Your time could be better spent. Yes, I have actually been told I am wasting my time raising awareness, sharing a ribbon and creating a video. That I should be thinking of ways to actually help people, to understand why our children are affected the way they are, to see what needs are not being met through currently available services. Yes, these are all very worthy and need our attention as well, but that costs money. To fund research, to poll focus groups, to help introduce new disability legislation — that all requires financial backing. And do you know how hard it is to fund something people have never heard of? I do. In the work I’ve done with the nonprofit, U.R. Our Hope, which helps families of children with undiagnosed and rare diseases, I have seen firsthand how difficult it is to garner support for an issue that is widely unknown. But in the last three years, our events have grown, and our reach is spreading. The more awareness we’ve raised, the more money has also come with that awareness. Money that can be used to help families or fund research or fund the creation of an undiagnosed national database to help patients get a diagnosis faster. Awareness is just the first step in making a difference. Awareness without action is pointless. This I do agree with, which is why awareness, for me, isn’t limited to any one specific day. I always try to encourage action. Action can be as simple as taking a few minutes to research a new diagnosis or as elaborate as hosting a fundraising event to address a specific need for a rare disease community. Sharing a ribbon or changing your profile picture is not enough. You need to get out and do something. Teach someone about what you have learned. Raise or donate money to a specific cause. Meet someone with a rare disease and learn about what they like and don’t like. Learn who they are as a person. Play a game with them. You will surely find more common ground than you think. Meet some of our RTS brothers and sisters in our Facebook album. Learn more about Rubinstein-Taybi syndrome at www.rubinstein-taybi.org. Donate to the Special Friends Foundation, which is dedicated to helping individuals with RTS. Follow this journey on Journey Full of Life. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

Vanessa Garcia

When a Nonverbal Child Can’t Tell You Where It Hurts

My son, Braxton, fell yesterday. I didn’t see how it happened. It’s not the first time he’s fallen, and I didn’t see it. But this time it was different. Only I didn’t know it. Today, I got a call from the school nurse. Nurse: “Have you seen Braxton’s foot?” Me: Panic sets in. “His foot? Um, no? Why?” Nurse: “He hasn’t been wanting to walk today.” Me: “Oh yeah, I told his teacher that. He’s had a sinus infection, and we think his balance is off. He’s been a bit wobblier than usual.” Nurse: “No, I think something is wrong. His foot is swollen. He won’t bear weight, and he cries when we try to move it.” Mommy guilt immediately sets in. How did I not notice? He had therapy this morning, but none of us noticed. How in the world did this happen? Oh, right, Braxton fell yesterday. I didn’t see how it happened. He fell, and I heard a thud followed by a cry. I jumped up from the couch to check on him. He was sprawled on the floor with his head against the wall. I thought he hit his head. I checked for bumps and bruises. I checked his eyes. No vomiting or loss of consciousness. We’re good. But I didn’t check his foot. I didn’t even think to check. He had no words to tell me to do so. This morning he had therapy. He didn’t want to climb the stairs. In fact, he stiffened his leg and planted his feet. We thought he was just being stubborn as he often does. In hindsight, I remember thinking he has sure been crawling around more than usual. I remember realizing his balance was off more than usual. I remember seeing him drag his foot as he walked. I saw it but didn’t piece it together. I should have noticed. What kind of mother doesn’t notice? The kind of mother with a child who cannot express hurt and pain. I believe this is the hardest part of having a nonverbal child. The part where your child’s pain tolerance is so high he doesn’t flinch when the doctor tries to see where it hurts. The part where they end up taking 10 X-rays to check out the whole leg because he can’t tell us what part hurts. The part where I feel helpless. The part where I feel like I failed my child. The part where the doctor says, “Well, we didn’t find anything. Just keep him off of the foot.” The part where I can see there is something more, but he can’t tell me and the doctors. Of all the things I wish for my child, the one I wish for something fierce is a voice. Words to tell me when he hurts. Words to tell me when something is wrong. He’s not proficient with his talker yet, so that can only help so much. Days like today are frustrating. I wish I could say I’m glad it wasn’t worse, but what if it is and we missed it? Braxton is clearly in pain when he tries to walk. His foot turns outward, and he kind of drags it behind him. But the doctor says nothing is wrong. All they saw on the X-ray is a hip issue we knew about where the hip joint didn’t fully form. Is that why he is limping now? Did the fall somehow exacerbate that? I don’t know. The doc thinks so but can’t say for sure. I wish Braxton could tell me. I wish I could make it better like a mom is supposed to. This is the only part of my son’s condition I regularly wish away. Follow this journey on Journey Full of Life. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Vanessa Garcia

When People Ask If My Child Will Ever Speak

When my son, Braxton, first got his G-tube at 2 weeks old, the first question I was inevitably asked after explaining his tube to family, friends and strangers was, “So will he ever be able to eat by mouth?” For the longest time, my response was, “I don’t know,” and we genuinely didn’t know. Once we started working with a speech therapist and making progress, “I don’t know” turned into “Yeah, more than likely he will be able to eat like you and me, but he’s still learning.” Nearly three years later, you would never know there was a time he couldn’t eat. He still uses his tube for liquids, but he eats all of his meals by mouth. He still only eats purees, and we continue to work towards table food, but he is eating. Our journey to communication has been similarly riddled with questions and uncertainty. When we learned of his hearing loss, we quickly began learning sign language. Family and friends asked, “Do we need to learn sign language, too?” I didn’t know. Braxton didn’t pick up sign language as quickly as we had hoped, and it seemed almost pointless to make our family learn, too. Instead, we encouraged them to continue speaking to Braxton just as they would any other child. That constant exposure to language was still just as critical. We hoped for verbal language but were never sure if it would come. When we finally received the diagnosis of Rubinstein-Taybi syndrome (RTS), we learned from other families that many of the children are nonverbal and use sign language or a communication device to speak. There are many who have at least some words, and a few who are quite verbal. Where would Braxton fall on that spectrum? I don’t know. By that time, we had already started on the path to high-tech Augmentative and Alternative Communication (AAC), and the diagnosis confirmed this was the path we needed to pursue, always holding onto the hope of verbal speech. We saw little progress at first, but we saw enough to keep hope alive and to continue this path. My dream for him has always been (and will always be) verbal speech, but the goal is communication. Communication using whatever means necessary. Since we’ve been using Speak for Yourself, a communication app on the iPad, quite heavily in the past year, the inevitable question has been, “So will he ever speak?” I don’t know. I don’t know if he’ll ever speak. I don’t know if we’ll ever hear his precious little voice. I don’t know if I will ever have the chance to tell him to stop talking. (But I don’t know if I would ever want to say that after waiting so long to hear him.) I don’t know what the future holds. We simply hope for the best. Here’s what I do know… I know that by pursuing AAC we’re giving him a way to communicate with us now. I know AAC is giving him the best chance to succeed. I know exactly when he wants hugs and kisses, because now he can tell me with his talker. Follow this journey on Journey Full of Life. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Vanessa Garcia

What I Hate Most About My Son's Rare Condition

Here is our love/hate ode to Rubinstein-Taybi syndrome a la “ 10 Things I Hate About You“ (I might have read too many Buzzfeed nostalgia pieces recently). To my child’s rare diagnosis: I hate that no one’s ever heard of you and that you’ll always be around. I hate the way that blue tag in my car hangs down. I hate the way you make others stare. I hate when my child hurts, and I can’t read his mind. I hate that so much it makes me sick; it even makes me rhyme. I hate the ways he’ll always be delayed. I hate it when you make me cry. I hate that you stole my child’s voice — even worse that I have to fight to get him a device. I hate it when his basic needs aren’t met and the fact that my answer to all developmental questions is “not yet.” Mostly, I hate the way I don’t hate you. Not even close… Not even a little bit… Not even at all. You see, you’ve made me change my perspective. I see there’s so much life to be lived. The smile we’ve come to love is one of your many hallmark traits, and that infectious laugh warms the hearts and souls of all acquaintances he makes. I appreciate the way you make me take a closer look and celebrate the inchstones not found in any baby book. We say that you don’t define him, but the him we know and love? Well, without you that him, he would not have become. We’ve made peace with your existence, and we know this path will be met with resistance. Armed with faith, hope and love this, too, we shall overcome. They told us not to expect much, but they didn’t know his spirit. The nevers became maybes, the maybes became soon, the soon became now, and now we know he has no limit. We have the courage to dream again without fear of the unknown because now we have a community of support, and my how it’s grown! We have people in our life we might not otherwise have known had we not started on this journey feeling so alone. Every challenge faced has made us stronger, and now it’s more clear than ever: a hold you have on us is no longer. Follow this journey on Journey Full of Life. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Vanessa Garcia

The 'R' Word Is Offensive Whether or Not You're Affected By Disability

Today is the official day of awareness for the  Spread the Word to End the Word  campaign. Per usual, I’ve been reading posts from various bloggers who I often read, and today  a particular post  struck a nerve with me – not in a bad way. The author wrote, “ You’re not offended until it affects you,” as a response to someone who simply doesn’t understand why the word “retard” can cause one to get so “worked up.” I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for most people. So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that the people using them likely have zero experience with people who have intellectual disabilities. They don’t understand the “big deal.” They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and hope his peers will accept him. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the short bus? Will they simply call her a “retard” and walk away? If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it OK for you to use the word. When we correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our loved ones. We know because we’ve been you. So many of us grew up using the r-word and never gave it a second thought. But then we grew up and maybe had a child with a disability, and “retarded” became part of the diagnosis. Suddenly, the word lost all of its hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning. And it did not mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal,” and it was no longer “just a word.” You’re not offended until it affects you. Why should disability have to affect any of us at all before we’re offended by the r-word? I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so they understand the true significance of a word. Don’t wait until it’s too late. Rare disease affect 1 in 10 Americans. One in 68 children have been diagnosed with autism. The prevalence of other disabilities is just as great. Chances are, you do know someone with a disability. They may not be your child or your family, but they’re human, and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It doesn’t belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I’ve felt. Take a stand now. If one day, you learn your loved one has an intellectual disability, you will be spared the shame and embarrassment I faced when that word became more than “just a word.” Take  the pledge  now and Spread the Word to End the Word. This post originally appeared on Journey Full of Life. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Vanessa Garcia

When My Son's Cortical Visual Impairment Is Unavoidable

I’m sitting here waiting for a representative from the DARS Division of Blind Services (DBS) to arrive for our scheduled assessment. I received the call a few weeks ago, and the representative briefly told me about all the wonderful services and programs the DBS offers. There were many I thought would be beneficial for our family. She performed a quick screening to see if we would be eligible for services, but it was a mere formality, “With that CVI diagnosis, you’re sure to qualify.” I was excited to schedule the appointment and couldn’t wait to learn more. But after I hung up the phone, a strange feeling swept over me. On one hand, I was excited about the additional services, but on the other, I realized my child was now classified as “so disabled” that he qualified for all of these extra services. “With that CVI diagnosis, you’re sure to qualify.” Not too long before this call, I received a notice that Braxton had reached the top of waiting list for the Deaf and Blind with Multiple Disabilities (DBMD) Medicaid Waiver. If eligible, he could qualify for Medicaid on his own without taking in to account his parent’s income, which could disqualify him from receiving services. Again, excitement for the new services and opportunities, but sadness because of the classification. When I look at Braxton, I don’t see “disabled.” And I’m sure it’s the same for nearly all other parents of children with special needs. I see a tenacious young boy learning to exercise his independence and autonomy. A little boy who defies me when I tell him not to chew on his sister’s shoe by clamping down tighter or throwing the shoe across the room. Or even more developmentally appropriate, when he refuses to put it down until I walk up to him and he sets it down and tries to act like he never had it in the first place. I see wide eyes and a bright smile that fill my heart with so much joy I could burst. I see a wobbly walking toddler through tears of joy because “they” told me he might not ever walk. I see a child full of love who walks as fast as he can just to get a hug. Little hands that pull me back and squeeze ever so tightly because you can’t just get one hug. I see “wonderful” every time I look at him, but every once in a while, that ugly feeling washes over me when his disability becomes real and unavoidable. When I watch him wobble across the room while a friend’s 2-year-old is running around, jumping on furniture, “Are you sure you want a normal 3-year-old?” runs through my head. When I finally gave in and asked our pediatrician to fill out the forms for a handicap placard — and not the temporary red one, the permanent blue one. All the way back to the NICU when the doctor told us Braxton would need a feeding tube and he might not ever eat on his own. Agreeing to the tube meant he was going to be different for the rest of his life. The tube meant he would never be normal. What would people say? Would he ever be able to do things like a regular kid? When I answering developmental questionnaires and mark “no” for all the things he can’t do. When sitting in his first school ARD and there was no fight for services because there was no denying that he needed them. Only, I didn’t recognize there was no fight until my typical daughter needed help and it didn’t go nearly as smoothly because her disability didn’t affect her enough. The day I finally parked in a handicap accessible space only to fear that someone would question me and therefore make me tell them, show them, “Look, look how disabled he is! The placard is for him.” Perhaps it’s not that his disability is any more real in these moments than it is at any given time, but more so the fact that I have to accept it and recognize the ways it permeates our lives. In three years, I feel like we’ve all come so far and we’re in a good place, a place of acceptance. We’ve adjusted to what is normal for us, so when these feelings intrude, it always surprises me. But I recognize that grief is cyclical in nature. We’re constantly moving through the stages of grief, sometimes staying in one stage for long periods of times, which lulls us into a false sense of security until something jolts us back into active grief. I also realize we’re still early in our journey, and this feeling is only going to continue as the years pass. With every birthday, every milestone, every IEP meeting, as I watch him walk next to his peers, as I dream about hearing his voice and awake only to find he still has no words for me. But then, there is that smile — the smile that brings me up from the depths of my sadness and self-pity. That sweet, charismatic, wonderful smile as he turns his head like a bird to make sure I’m looking right in his eyes as I lay in bed and then he comes in for a hug and lays his head so sweetly on my shoulder and squeezes me tight. It’s in those moments that the labels and services and countless appointments no longer matter. When wonderful returns and if only for a moment, disability disappears. And with that there is a knock at the door. I squeeze my boy one more time and take a deep breath. This post first appeared on Journey Full of Life. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .