Trisomy 5q

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    My Child Has Trisomy 5q. This Is What It Means to Be Rare.

    February 29 is Rare Disease Day. February is also Congenital Heart Defect Awareness Month. And the month of Feeding Tube Awareness Week. My child is part of all three. • 80 percent of rare diseases are genetic in origin. • 50 percent of the people affected by rare diseases are children.• 30 percent of children with rare disease will not live to see their 5th birthday. My daughter Naylah’s rare disease is trisomy 5q. Naylah has a heart defect. And global developmental delay. She uses a feeding tube due to “failure to thrive,” poor weight gain, reflux, silent aspiration, coordination issues — not because she is a picky eater. Often we are asked why her tube is there if she can eat some food orally. Truth is, if it wasn’t for her feeding, she wouldn’t be thriving. She has a chronic ear infection and strabismus and microcephaly and experiences slow growth/weight gain. Naylah is rare. Her rare journey started when a cardiologist thought she had more than heart issues; at about 5 months old she got diagnosed with trisomy 5q. That day our rare journey began.That day an uncertain path started for us; fears took over — fears of the unknown. It started with therapies and early childhood intervention and countless doctors to see. Naylah will be 4 years old in May; she’s gone through 11 anesthesia and nine surgeries.I wish I could say we are done, but we are far from it. This is rare; this is our lives. If we’re not at the doctors, we’re in therapy. We live in a routine. She’s finding comfort in the medical world. When at the doctors office, she will go to her nurses and doctors for a hug or to get entertained by them. When in the hospital for a procedure, she plays with the nurses and happily waves goodbye before they take her away from me. This is trust. This is her knowing we are always doing what’s best for her. I’ve had the privilege to hold her twice, while she fell asleep for anesthesia. My heart broke into pieces while holding that small human being grasping for air, looking me straight in the eye. I smiled and sung to her until she fell asleep. I’ve held her hands in a hospital bed when I couldn’t hold her in my arms. I’ve waited for hours while they did a heart cauterization. I’ve seen her heart beat at 250 while she still happily clapped her hands, leaving her doctors’ mouths wide open. Her little body is marked by surgery scars, and I am reminded daily of what she has gone through at such a young age. I’ve heard she will not be able to walk, talk or “do much” by many specialists, and today she is defying the odds by doing exactly the opposite. We communicate through a communication device. I’ve stayed up for hours searching what else I can do and getting ahead of her doctors so I could be the best advocate for my daughter. We’ve reached a point where our doctors listen to my concerns instead of by going by the book. I’ve cried in silence for hours wondering why I couldn’t find a similar case as hers and be able to know what is ahead for her, for us. I’ve cried in fear of what tomorrow would be like and how her life growing up would be. I’ve tried for hours to find another child with the same diagnosis, to know we are not alone. I still type “trisomy 5q” on the Internet to see if anyone else is looking for a child like mine so we can share our fears, our stories, and what our tomorrow might look like. All I see, all I find is our story, our journey. Our journey is written for the next parent who will have a child with the same diagnosis and perhaps will feel less lost like we once did. It’s good to know you are not alone, that there is someone out there who knows exactly what you are going through. We have that with our rare family community — different stories, different paths, some have no diagnosis at all and are still trying to find what makes them so rare. But we share something in common: someone rare, and each one of us is trying to raise awareness. You don’t know the love you have for your child and what you can do for them until it happens to you. You see the world differently; you want people to know the differences and you want them to accept it. I’ve become my child’s advocate. I fight for therapy hours with insurance, to get referrals for new specialists with our medical company. Our home has been invaded by strangers — “strangers” who now love my little one and want what’s best for her. That is what rare looks like. Rare is not knowing tomorrow. Rare is fighting for your child’s rights. Rare is often feeling alone. Rare is crying in silence because you fear no one will understand because they haven’t walked that path. Rare is also crying of joy over your child’s accomplishments. Rare is feeling exhausted because sometimes you wonder what else you can do and feel like you have no more energy left behind. Rare is spending most of your time in the medical world. Rare is trying to find a balance for your child to experience as much of a “normal” life you can offer. Rare is knowing the meaning of loving unconditionally. Oh the love, oh the strength that unconditional word gives you. Rare is knowing your child is happy. Rare is knowing you are doing the best for her. Rare is the rewarding cuddles and kisses and the trust she has in me. You go beyond your limit; you do all you can for that human being. So for Rare Disease Day, I’d like for you to know a bit of my daughter’s journey. It’s rare, and it’s our story.

    What Was Impossible to See on Diagnosis Day, I See Clearly 3 Years Later

    It’s been three years since we stood in a front of the geneticist who gave us a diagnosis we never heard of: trisomy 5q. All sounded so unreal. I kept repeating that word in my head. Trisomy. It was nothing I’d imagined hearing. Then again, what exactly did I want to hear? Even today I’m unsure. What she has doesn’t have a cure, and we didn’t know how it would impact her life. I remember my head spinning, my heart racing, staring at her, tear after tear falling and the specialist handing me one article from the internet as an explanation of her diagnosis. She had a copy in one hand and read it out loud to us. My daughter’s diagnosis came from a printer. One article was found about it. Stepping out of the office, I was at lost. Where do I go from here? Where do I go from “your child has heart issues” to “your child has a rare trisomy”? How do I tell others? Do I have to tell others? Trisomy means delay; it means people not accepting differences; it means many health issues. I could only see the bad while holding such a beautiful human being in my arms. I couldn’t imagine the worst, but at the time, I believed I had to. When I heard she may not walk or talk, and she may be severely delayed, I didn’t know what to expect. It wasn’t just a parent’s job anymore; we had to have a team of specialists. Our home was invaded by strangers who wanted my little one to succeed, too. Strangers to this day I can count on when in doubt of something. This month marks three years with an actual diagnosis. That little girl who wasn’t going to walk according to some doctors is now trying to run. Next month it’ll be a year since she started walking. That little girl who woke up at all hours to eat just like a newborn now gets 12 hours of sleep. Today I can be thankful for her feeding tube, when originally I doubted if we made the right choice and if by placing it, if she would ever eat orally. I once was ashamed to tell her story, afraid people wouldn’t get it. Afraid of her differences and acceptance from others. Today I can tell her story without any hesitation. Today I’m trying to make a difference for the next parent who gets the same diagnosis so they don’t ever feel lost. If you Google trisomy 5q today, you won’t find just one article — you can find several. This is because of those who believe our story is worth sharing, those who believe being different is beautiful. I’ll be forever thankful to amazing organizations that believe in our children’s differences and do everything for those kiddos and the world to know about them. I’ll be forever thankful to amazing photographers for taking the time to capture my little one’s magic. I’ll be forever thankful to the specialists who believed in my child and made sure her needs were met. Unless you’ve lived it, you can’t imagine how difficult it is to hand your child into a surgeon’s arms, spend nights in hospital while holding your little one’s hand and praying things will be OK. Unless you’ve lived it, you can’t imagine how hard is for some people to see your child the way you see your child. She’s simply amazing. Despite all the health issues, the delay, the fights to eat food orally or to get a sound from her, she is happy, and today, I truly know this is all that matters — k nowing she’s happy. I couldn’t see all of this three years ago. I imagined the worst. Today, I make sure she’s heard. I am her voice until she can be her own. I am her nurse, her therapists when they’re off-duty, agenda-keeper, tear-dryer, her arms she comes to when needed, the one who protects her and makes sure she knows no matter what difficulties she may have her way, things will be OK. I couldn’t ask for a better child to guide me through motherhood. Today, I can’t picture her any differently than her own little self. It would be a lie if I told you my heart doesn’t ache when a typical 3-year-old comes to me and tells me stories when she isn’t able to yet. But in her own little way, she tells me what she wants, and I can only be thankful for that. I know her favorite songs, I know what she wants by a simple gesture and I know what makes her happy — you can’t beat that. I wish I’d known three years ago when I left that office in tears that things would be OK, that the road will be long, that she would go through more than most people go through in a lifetime — but that our lives with a miracle would be pure joy, that I would be proud of all she has accomplished. That day, I apologized for her diagnosis, I apologized for all the things she may or may not be able to accomplish on her own. Today, I just want to apologize for ever doubting her, because she isn’t defined by her trisomy 5q — she’s just who she was meant to be all along. Happy three years of diagnosis, baby girl. My life is just way better with you in it. You’ve taught me way more than I ever thought you would. You’ve been my best teacher all along. 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.

    Strangers Give Birthday Surprise to Young Girl With Trisomy 5q

    Daniella Ferreira and her daughter, Naylah, live in Austin, Texas. Naylah has trisomy 5q, a rare chromosomal disorder that has landed her in and out of the hospital throughout most of her life. She has undergone heart surgery, a feeding tube placement and numerous other medical procedures — all before she was 3 years old. Naylah’s third birthday was coming up, and one of her favorite things in the world is Snow White. Ferreira wanted to find her a Snow White dress to wear, but because Naylah is smaller than the average 3-year-old, finding a dress that fit was impossible. So Ferreira reached out on an online message board for a local community group to see if anyone could help her find a suitable costume. That’s when an incredible stranger stepped in. Jennifer Bowen Soto, another woman in the community group, responded to Ferreira’s message and said she would be happy to make Naylah a Snow White outfit for her special day. The two finalized details, and soon, Naylah had a beautiful handmade Snow White blouse and tutu to wear on her birthday. Bowen Soto didn’t stop there. She contacted Lindsay Jo Allen, a lifestyle photographer also based in Austin, Texas, and arranged Snow White photoshoot for Naylah in the park — free of charge. Bowen Soto and Allen brought all kinds of props, including a mirror, wand, apple and even a bubble maker, to make the afternoon more fun for Naylah. Photo via the Lindsay Jo Photography Facebook page “They didn’t see her differences. They captured her beauty of being different,” Ferreira told The Mighty in an email. “When I look at the images, I remember those moments when two extraordinary women made my daughter feel like the most important human being on earth.” Ferreira says the moment she most cherishes from the day is when Naylah got up to hug Allen at the end of the photoshoot. “She hugged her for so long,” she told The Mighty. “It was like she knew what they did was beyond amazing.” “I’m not sure if they realize this was a big deal for us,” she added. “This was a huge act of kindness from someone who didn’t even know us but was still touched by my daughter’s journey.” To learn more about Lindsay Jo Photography and see more of her work, visit her Facebook page. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    A Letter to My Daughter’s Trisomy 5q Diagnosis

    Dear Trisomy 5q, I wish when my daughter was diagnosed, you would’ve wrapped your arms around my shoulders and let me know things would be okay. Instead, you gave me sleepless nights and a whole lot of tears. You made me wonder of my capabilities as a mother, and if I could be good enough for that special journey we were taking together. You made me doubt myself and gave me feelings of guilt, like I had done everything wrong for my child to end up with something rare. I was prepared for the heart issues. I had known about it since she was in my belly, I had accepted it after many tears shed, and I was somewhat prepared for all the surgeries and procedures needed. I had cried, I was mad, I feared the worst, and I had asked God to protect her. I held my belly tight every night with the hope that things would be just right. But I wasn’t prepared for you, rare diagnosis. You didn’t warn me; you took us all by surprise. You have absolutely no cure and you can give my child way more than just a heart issue. I wish you would’ve told me that things would get easier and then there would be days everything would go downhill. Days I would hold my child with uncertainty about what the future will bring her. Days I would doubt if I am making all the right choices. Days I would just want to be a mom, and not an advocate, not making 10 calls a day to doctors and therapists and keeping everything under a schedule and driving from one appointment to another. Days I wish I could just run away to a place where everything could be much easier for my child and forget it all. Simply forget you. Days where I wished I could just get a few more hours of sleep. Trisomy 5q, you have changed me. I had cried for that child I “lost” for so long, when really I didn’t lose her at all. Today I know it, but I didn’t know that almost 3 years ago when we embarked on this journey as a family. I have this child I’ve always dreamed of and she was exactly who she was meant to be all along. I couldn’t see too far back then; I had too many fears and mixed emotions. I feared how others would judge my child, how people would accept her when this world can be cruel to those who have special needs. I was the one trying to change her, when clearly nothing I could’ve done would change her diagnosis. You almost made me pity my own child. How could you? Look at her. She is stunning, funny, and oh my, the cuddles she can give you. You never want to let go of her because she gives you the most love, and brings you the biggest joys. She is a bright and curious little girl. She has her daddy wrapped in her fingers, and knows she can get anything out of me. She is a troublemaker who loves to get into things. She knows when she is not supposed to do something and gives that sassy look to see if can get away with things. She is energetic and loves the outdoors. She is just a toddler with extra challenges to confront, and she takes it all in with no fears. She has complete trust in us and knows we are always doing the best we can. You made my little girl go through open-heart surgery while being so small and so fragile, but you made us come out even stronger than we already were. You showed me the meaning of a true warrior, and I get the pleasure to raise her right here under my roof. You made me fall down on the floor in tears because I really thought I couldn’t do it, that it was too much to handle, and all along, I wasn’t the one who needed to be strong – my little one had all the strength in her for all of us. She’s guiding us through this journey, teaching us more about her diagnosis every day: how to treat some of the symptoms, and all the medication and special equipment needed. Trisomy 5q, you might have put me down several times, I’ll give you that one. You might have given my child many health problems such as heart issues, a feeding tube because she can’t eat much, delays, and the inability to speak for now. You have given us many days of fears and tears while putting her in surgeons’ hands or by staying up all night by her bedside… But you have given her the kindest of all hearts and the prettiest of all smiles. She’s a brave little girl who never gives up, someone who has the strength of a fighter, a little human being who is simply amazing in ours and many other people’s eyes. We are proud parents of someone truly unique, and I am proud to share your story, your ups and your downs. Mostly I am proud of every milestone my child accomplishes, how she confront her struggles while keeping a smile on her face and shows us that even by carrying your diagnosis, she may be stronger than you because she is not defined by her trisomy. She is just who she is meant to be. 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.

    What Being a Special Needs Parent Means to Me

    By the age of 25 I started telling my friends I wanted to be a mom. That’s all I wanted to be — a mom and a wife. I wanted to build a family of my own. I got lucky. That year I was expecting my first child. The baby planning, the morning sicknesses, the baby bump growing, the “What to Expect When You’re Expecting” book. All of it so exciting — first kicks, seeing your child via ultrasound. All so magical. Then, suddenly at the 20-week checkup, your child has a heart defect. Your world shatters in a way. The unknown. The worries of a first-time mom start, and you don’t even have that child in your arms yet. You get mentally and physically prepared because chances are after birth, your child will go with surgeons and have an operation right away — before you even get to hold her. Things didn’t turn out that way, luckily, for us and for her. At the end she was born pink and full of life. I got to hold her, stare and admire all her tiny features. The heart defect wasn’t as bad as it had seemed. After five days in the NICU, I got to bring my baby home with us where she belonged. That’s when all the real worrying started — having to watch your child not thrive, not meet all the milestones. You watch her struggle to finish a tiny bottle. Having a diagnosis at 4 months made it harder than ever. My world shattered; all I knew about children suddenly became so uncertain. My journey of a special need parent started that day. Before that, she was just a typical child with a heart defect — something that could be fixed with surgery. But you can’t fix genetics, you can’t do surgery and put all the chromosomes where they belong, take the extra ones out and put the missing ones there. My child has trisomy 5q. I can’t change that. It’s rare, and most likely you’ve never heard of it. I didn’t even know it existed. So, what does special need parenting means to me? It’s like a roller coaster with ups and downs. It’s something that gives you butterflies in your stomach but at the same time, boosts your adrenaline. It’s somewhat scary, but you’re not afraid to do it again after the first ride. It’s like a snow globe that you suddenly shake, and it all becomes a mess until everything settles down again, and it all becomes clear and peaceful, and it looks so perfect. It’s like taking a trip to a destination of your choice and suddenly finding yourself somewhere you’ve never heard of, but you come to find out that even if it’s unknown and you might get lost along the way, there’s magic. It can be as beautiful as the destination you wanted to be at in the first place. It’s like the weather. There are plenty of storms and sunny days. The storms sometimes make you shiver, but the sunny days warms you with joy and give you back the boost you needed. It’s finding yourself crying because you are mentally and physically exhausted. It’s finding yourself smiling because the smallest thing your child does is a big accomplishment. It’s becoming your child’s advocates and fighting for her rights. Special needs parenting to me is giving up on what once was a living room and turning it into a play room for therapy so she has the space she needs. It’s making sure you are giving your child the happiest of lives. It’s putting your needs last because you have someone that needs you more. It’s going to bed at night thinking, “What else can I do?” and waking with the same thoughts. It’s having to work extra hard for your marriage because you and your significant other don’t get to spend the same quality time you once did. And because every little thing turns into an argument. It’s finding in-between time for each other. It’s being stronger together. It’s trying to beat the odds of a high divorce rate when you have a special needs child because the stress can take over. It’s becoming a team. It’s giving up a career because you have someone who needs you more than a job. It’s living off one income. It’s staring at the calendar by the fridge and realizing how busy your child is. It’s filled with with therapies and doctor appointments. Trying to coordinate all of it together can become so overwhelming. Between that, you wonder when you will find time to just relax. Special needs parenting to me is unconditional love and caring for someone before caring for yourself. It is being available for your child 24/7. It’s giving all you’ve got — heart and soul. It’s being grateful that despite all your child went through, she has the biggest smile on her face. Always. It’s knowing she’s happy despite the difficult journey she may have before her. It’s knowing that she knows you are there for her and she trusts you. She knows you are making the best choices for her. It’s having less people to count on because you can’t trust everyone with your child. It’s finding yourself crying out of nowhere because you are not sure if you are doing this whole thing right. It’s being exhausted but still keeping a smile on your face. It’s always wondering what’s bothering your child because she is nonverbal. It breaks your heart. But it is also almost forgetting that she is nonverbal because you find yourself communicating with gesture and understanding each other. It’s her love that is worth a thousand words. Special need parenting is rewarding. You don’t judge people. You don’t notice differences anymore. You find yourself proud of how far your child has come. You find yourself giving your child a diagnosis before even getting to the doctor, and often you are right. You learn about medical necessities you’d never heard of before. You become a nurse without a degree. It’s seeing your child go through a heart surgery, feeding tube placement, hospital stays, countless blood work, MRIs, swallow studies, heart monitors, medications and thinking it’s all unfair. But you’re also thankful for her being in such good hands. It’s knowing you love her more than life itself. It’s watching her grow, learn, become her own little person and forgetting all about the bad days. It’s lying down on the floor and just cuddling and giggling with her. It’s doing the impossible to make her succeed. It’s organizing play dates with typical children so she can get motivated to do things they are doing. It’s doing everything you can for your child, letting her know you are there and she is loved. It’s living life normally. It’s celebrating all milestones, all surgeries dates, awareness days that she is a part of and showing how proud you are of her. It’s knowing she is so much stronger than I ever will be. It’s her showing me that life should be treasured — that not everything comes easily. It’s learning how to be patient and just breath. It’s spending countless hours on the phone with insurance, supply companies, nurses and therapists. Special needs parenting is knowing you are not alone. People before me went through it, and there will be many parents after me. I have found the best source of support with total strangers and parents who know what it’s like. With them, I have no fear of asking weird questions. It’s knowing they won’t judge you because they know how you feel. It’s finding yourself sharing with them your deepest fears. Special need parenting is like any other type of parenting. It’s being there for your child and loving them no matter what and becoming the best person you can be for them. It’s giving 10,000 percent and doing it all over again without a second thought. It’s knowing that you’re being the best parent you can be. I love my child, with special needs or without. She is my hero. In my eyes she is a warrior with an extreme strength. She will move mountains. A version of this post originally appeared on The Beauty of Being Different. 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.

    The Day Everything I Was Familiar With Became Unknown

    September is the month where I rethink things over and over again. It’s the month of Naylah’s diagnosis. This past September marked our two years in this journey. I still remember it, as it was yesterday, that phone call that changed it all. The day my child, who I thought was a “typical” little girl with just a heart issue, was given a diagnosis that I’ve never heard of. I remember answering the phone, the nurse introducing herself and shortly after that, letting me know they’d received Naylah’s results, and we needed to see the geneticist. I knew at that moment something was wrong. What could of possibly be? I couldn’t image, even with all signs being there. My almost 5-month-old daughter couldn’t finish a 2-ounce bottle, had a hard time following lights and focusing on people, couldn’t roll, was nowhere near able to sit without assistance, wouldn’t put feet down if held up, didn’t have much strength and had the tiniest features ever. Yet, to me it was just a heart issue, and soon she would get passed it. What could of possibly be? Everything seems so blurry now; so much has happened since that day. So much progress has been made, so many tears shed, so many days of doubts gone by, so many laughters and moments of pride. One thing never got blurred — what I felt the day my child was diagnosed with trisomy 5q. I had this knot in my stomach while I sat in the doctor office waiting for her to walk in. I was waiting for her to tell me something terribly awful. She simply said; “Your child has trisomy 5q; it’s a rare genetic disorder.” She then gave us the only info she could find — an eight-page internet paper from late 1980’s. She read part of it to us: “small head, small lips, short neck, heart issue, delay…” Yes, sounded just like our Naylah. She gave us a couple others flyers of where to reach out for therapy, to log her trisomy in and possibly find a match. It was all so overwhelming. I couldn’t stop staring at Naylah, while I kept repeating in my head the name of her trisomy. My husband was telling me to not worry — that her extra chromosomes will make her extra smart. But what about the other chromosomes she lost? What would they do? The geneticist couldn’t inform us much. She asked for us both to be tested and results came back that it didn’t come from either of us. She gave us options for if we ever wanted to have another child and tried to reassure us that chances were we wouldn’t have another one with the same diagnosis. It could only be bad, if she was giving us options to have a “normal” child, the child I thought I already had. The ride back home was silent. Part of me couldn’t help but think it was my fault — that I did something that made my child’s genetics change. I felt guilty. I asked Naylah that day to forgive me. I cried while holding her in my arms. That day, part of something I thought I knew became unknown. I had the feeling I’d just received a new child after her diagnosis. My love, on the other hand, became stronger. What she had had a name. It wasn’t anymore, “She has heart problems, she gets tired easily.” The more I would say “trisomy 5q” in my head, the worse it sounded, the more awful I’d feel. I was feeling sorry. How could a mother feel sorry for her child who she loved above all? I was picturing the future, where people can be so mean. I wanted to put her forever in a cocoon and never let anyone harm her. I didn’t want anyone to feel bad for her or feel sorry like the feelings I once had. I didn’t want anyone to look at her differently and treat her in any other way than a typical child. I started doing research. I’d spend lots of time in front of my computer; nothing would come up besides that damn article. I was feeling alone. I couldn’t turn to anyone and ask for tips or help. I now write about our own story to maybe one day help a family that feels lost like we once did. With time we would truly learn all our daughter requires, all her needs, all her treatments and what trisomy 5q was all about. I mourned for that child I “lost” that day. I really couldn’t picture too far ahead. When you read about genetics and trisomy, it’s all so scary. What they give you — information about life expectancy, problems that comes with it — it all seems so unfair. That day, everything changed — but not my love towards my daughter. I knew I had to be stronger, that I needed to let go of those feelings I had.  Why did I have the feeling of guilt, the feeling that I’d done something for this to happen? Why was I feeling sorry when it didn’t have anything to do with mine or her dad’s genetics? Why was I so afraid to tell everyone about her issues and new diagnosis? Why, for the longest time, would I just tell everyone she was behind because of her heart not giving her enough strength for anything else? I wanted to protect her; that’s all I ever tried to do. At the same time, I was protecting myself so people wouldn’t feel bad for us. I felt like I’d failed at my job as a mother. I felt like I hadn’t protected my child from harm — that I wouldn’t be able to protect her from those who will stare and judge and feel sorry for her. I wanted people to see her the same way I did and do. Yet they stare. If it’s not her size, it’s because of her feeding tube. If it’s not her feeding tube, it’s because of her heart scar. If it’s not her hear scar, it’s because she makes a whole lot of sounds instead of words. The list can go on. It’s been two years, but what a two years it’s been. I once felt lost and hopeless. I once felt like there was nothing I could do but wait. There’s so much more to it. Two years have gone by, those feelings are far behind, and when they haunt me, I shake them off. I put things back in place. I feel proud of all she achieves, I feel proud of her milestones. I’m proud of being her mother. Every time we’re somewhere I’m still curious about children’s ages and their heights and weights and all they can do compared to my child who can’t do all that… yet. I still try to protect her the best way I can, while showing the world her beauty of being different. I accept that. I accept that she hasn’t reached all her milestones yet — that she isn’t talking and eating a full meal orally. It’s daily hard work, teaching her new signs, showing her how to use her boards with new images. When she eats, it’s a patience game until she shows interest. She needs help from specialists to get to do things others children her age do. It could have been much worse. She could have been undiagnosed or medically need more things. She lights up a room with her smile and her cuddles. She’s the boss of her own body and mind; when she wants to do something she’ll do it — always has, always will. It’s not an easy journey, but acceptance plays a big part. I accept her differences, and I’m proud of the little human being she’s trying to become. I accept that she may or may not catch up on her delays, and she’ll always have her differences. Most of all, I accept the fact that my head may not be always held high. That I may shed many tears and have many days of doubts, but that’s not because of my child’s different needs. Because I’m her mother and not everything comes easily, because there will be days I feel like I failed to do my best and because we all have days of doubts, of fears, challenges that are not easy and choices to make. Along with that, there will be plenty of moments of pride, happiness, tears and big achievements. At the end of the day, two years in this journey or not, I’m just a mother trying to raise my child the best way I can. She shows me a totally different world — what once I thought was unknown has become our new normal. And it’s totally OK. A version of this post originally appeared on The Beauty of Being Different. 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 .