Natalie Roberts-Mazzeo

@natalie-roberts-mazzeo | contributor
Natalie Roberts-Mazzeo is a passionate writer, speaker and the founder of Miracle Mama. She lives in Melbourne with her husband and two beautiful daughters. Natalie is dedicated to empowering and inspiring mothers who are raising children with ​additional​ needs. Through coaching, community and connection, Natalie’s mission is to create a space for women to reconnect with themselves and what is most important to them. Join the community of Miracle Mama’s and receive instant access to the free resource page, tools to help you thrive, not just survive. You can also connect with Natalie via Facebookand Instagram.

Cuidar a Mi Hijo Con Una Discapacidad es Trabajo de Tiempo Completo

Nota del editor: ¡Gracias por leer The Mighty! Por ahora, como te darás cuenta, la mayoría de nuestro contenido está en inglés. Estamos empezando a cambiar esto porque, aunque estamos ubicados en los Estados Unidos, nuestra comunidad es global. De cualquier manera, ahora mismo puedes publicar en nuestro sitio o hacer preguntas en español — o en cualquier idioma que desees — para conectarte con otras personas en nuestra comunidad. La realización del enorme trabajo que hago fue muy claro para mí cuando escuché estas cuatro palabras: “… pero Natalie, no trabajas.” El tono y la insinuación en la conversación antes de ese comentario sugirió que no hago nada en absoluto. Recuerdo esta conversación con tanta claridad porque literalmente, me quedé en silencio. Ni siquiera dije una palabra más. En cambio, mi mente comenzó a desentrañar los últimos cuatro años desde que mi hijo fue diagnosticado y todo lo que pude ver fue una enorme cantidad de “trabajo.” Tanto trabajo, que ni siquiera mi trabajo anterior en una empresa por más de 10 años en el manejo de cuentas multimillonarias se acerca a la carga de trabajo que he experimentado desde que me convertí en la madre de un niño con una discapacidad. Claramente la otra persona no tenía ni idea de lo que sucedía detrás de puertas cerradas, salas de espera, hospitales, terapias y más. Así que creé esta imagen del día en que un padre recibe el diagnóstico de su hijo: No solo se les entregó el difícil diagnóstico, sino que junto con él, una pila de papeles se les amarra a la espalda, dos veces más grande que su altura. Me imagino a las familias saliendo del hospital, aturdidas, confundidas y en shock. La pila imaginaria de papeles que llevan en la espalda gradualmente se vuelve más pesada a medida que los hijos necesitan más cuidado profesional. Los padres son arrojados al confuso laberinto del sistema médico con tantas incógnitas. Ahora todo su mundo y su calendario podrían girar en torno a hospitales, terapias, equipos, pruebas y más. Citas de hospital. Todo comienza aquí para algunos de nosotros. En nuestro caso, fue el primer lugar donde los médicos utilizaron las palabras: diagnóstico, discapacidad y enfermedad. De repente, tu hijo y su salud se dispersan entre diferentes departamentos dentro del hospital; neurología, ortopedia, genética, medicina general, etc. Cada departamento se interconecta de alguna manera, pero tienes que continuar juntando las piezas del rompecabezas para poner una imagen completa. Cada departamento requiere sus propios exámenes médicos, como exámenes de EEG, radiografías, análisis de sangre o similares. Muy a menudo, cada cita individual se extiende a otros departamentos del hospital donde se requieren más pruebas o resultados. Luego, si se requiere cirugía, eso agrega otra compleja red de citas, preparación y cuidados posteriores. Los efectos secundarios de la condición del niño a veces pueden crear incluso más trabajo y atención médica que el diagnóstico inicial en si. Intervención temprana y servicios. Luego vienen los enlaces a servicios de intervención temprana, compañías u organizaciones independientes que pueden ayudarnos a navegar por el sistema, terapias y equipo médico. Hay trabajadores sociales quienes tratan de conseguir acceso o servicios para nuestros hijos. Las terapias se programan quincenalmente o semanalmente, según las necesidades de nuestros hijos en ese momento. Citas con especialistas. ¿Recuerda cuándo dije que hay distintos departamentos dentro del hospital y cómo se necesita información diferente para cada médico? Bueno, lo mismo pasa con diferentes especialistas. Hay un equipo de especialistas que no trabajan en el hospital, pero haces citas con ellos porque es una necesidad para nuestros hijos. Conforme nuestros hijos crecen y tienen nuevas necesidades, a menudo su cuidado puede volverse más complejo. Papeleo medico. Vivimos en una sociedad sin papel más que nunca gracias a servicios en línea, sin embargo tengo cuatro folders masivos llenos de documentos médicos, informes y pruebas. Informes que ningún padre querría estar asociado con su hijo. ¿Alguna vez has completado un formulario que te pregunta acerca de la historia médica en detalle? Para muchos de nuestros niños, esta sección del formulario llenaría muchas páginas en comparación con la mayoría de un adulto. Los formularios deben completarse, archivarse, enviarse, actualizarse… sigue y sigue y sigue en cada etapa del crecimiento y desarrollo del niño. Calendario. El calendario ¿por dónde empezar?  Un mes está lleno de citas, y es lo mismo durante todo el año. Luego están los otros hijos y sus necesidades en torno a la escuela, la vida social y más allá. Y aún estando organizados de repente sucede el momento que dices, “Sh*t ¡Hoy es el paseo escolar de mi hija y no he preparado las cosas necesarias!” Es el llevar recoger a mis otros hijos cinco días a la semana, lo cual puede ser un desafío cuando tienes a tu hijo con una discapacidad contigo. Las reuniones sociales toman un asiento trasero, no por elección, de ninguna manera. Extrañamos nuestros espíritus sociales libres que fluían antes de que nuestras vidas de padres cambiaran las cosas. Es como caminar sobre una cuerda apretada, no hay mucha flexibilidad para romper la caída, por lo que debemos priorizar la salud de nuestros hijos y las necesidades de la familia por encima de todo. La carga mental. Las listas de tareas pendientes crecen y se expanden con el ajuste constante y la reorganización de las terapias, especialistas y hospitales. ¡Largos tiempos de espera en el teléfono son parte integral de este mundo! Debes asegurarte de tener un plan para la comida cuando sabes que la vas a pasar en salas de espera y citas. Luego están todas las pequeñas cosas como recordar tener que tirar la basura, el limpiar la casa, conciertos escolares, clases de gimnasia, lecciones, tareas. Es el malabarismo entre todos los hijos y hasta entre ellos mismos. Luego está la preocupación constante. Muchos padres de niños con discapacidades se van a dormir preocupados de que sus hijos no salgan de la noche. ¿Puedes parar por un momento y releer la última oración? Respira profundamente. ¿Puedes siquiera empezar a imaginar la angustia que viene con eso? Para muchos niños, sus necesidades médicas son serias y ponen en peligro su vida. Esa es una preocupación masiva para cualquier padre. Algunas familias viven con máquinas médicas constantes en sus casas que emiten pitidos durante la noche, alarmas para despertar a los padres en caso de que su hijo tenga una convulsión, medicamentos para administrar y más. Muchos viven con la niebla constante de preocupación y agotamiento, haciendo que la paciencia y la perspectiva se sientan tan lejos. Salud y autocuidado. Lo escuchamos todo el tiempo: cuídate primero. En muchos casos, simplemente no es posible dadas las necesidades continuas de nuestros hijos. Y aquí es donde el espacio de autocuidado puede ser un poco complicado. Hay una emoción llamada “culpa” y hay muchos padres de niños con discapacidades y necesidades médicas que eso sienten. Se sienten culpables si colocan primero sus necesidades, o por tomar un tiempo para descansar. El hecho es que a menos que prioricemos nuestra salud y bienestar, no podemos brindar el nivel excepcional de atención que nuestros hijos necesita. Un padre descansado, especialmente en circunstancias de condiciones de salud complejas para sus hijos, es de suma importancia. Carga física de trabajo y preparación. La cantidad de cuidado y esfuerzo físico adicional que puede aportar el día a día es enorme. Vestir: Hay niños que quizás no puedan sentarse, pararse o ayudar a facilitar el proceso de vestirse. Se está cargando, moviendo extremidades y equilibrando. Cargar: Hay que cargar niños para ponerlos en sus sillas de ruedas, asientos, baños, etc. Cargarlos de una habitación a otra, dentro y fuera de la casa, y luego cargarlos para abrirles el mundo. Sólo un viaje rápido al supermercado local puede ser bastante complicado. Organizar: La preparación necesaria para garantizar que tengas lo que es necesario para tu hijo, de lo contrario, podrías quedarse atascado en su casa si tu pareja accidentalmente se llevó el auto accesible ese día. No hay muchos planes B si tiene un niño que no puede sentarse o caminar, y no tienes el equipo médico necesario. Alimentar: Algunos niños necesitan comer puré, ya que corren el riesgo de aspirar o necesitan alimentarse por medio de una sonda. Comunicar: Descifrar las necesidades de un hijo cuando no hay un discurso verbal puede ser difícil. Muchos padres se preguntan, ¿proporcionamos lo correcto en el momento adecuado? ¿Tenía hambre su hijo o tenían una picazón en la espalda que no podían alcanzar? ¿Necesitaban ir al baño o querían usar los otros zapatos? ¿Se sentían mal o eran simplemente más tranquilos? El juego de adivinanzas puede ocupar mucho espacio mental. Así que regresamos a esa conversación inicial, ya sabes, la de “trabajar.” Podría haber respondido diciendo que he creado dos sitios web. Uno para que mi hija, donde comparto nuestras experiencias con la esperanza de ayudarla de cualquier manera posible. Que soy responsable de ese sitio web, incluyendo el responder a cada mensaje que recibí de otros padre o de la comunidad en general. El otro sitio web creado para construir un negocio en línea y apoyar a otras mamás, como yo, cuya experiencia de ser madre cambió en un instante. Podría haber explicado que completé un curso de coaching reconocido a nivel mundial, y lo hice estudiando en salas de espera, hospitales, vigilias nocturnas después de ayudar a mi hija, en el automóvil, escuchando los módulos del curso y entre momentos de descanso. Podría haber explicado cuántas veces simplemente sentí que quería rendirme. Sin embargo, a lo largo de todos los altibajos, continué intentando superar los desafíos al mismo tiempo que intentaba ayudar a los demás. Podría haber explicado que estaba usando cada pulgada de mi energía para intentar crear un espacio en el que aún pudiera trabajar y honrar el hecho que cuido a mi hija de tiempo completo. Podría haber explicado mucho más. Sin embargo, no lo hice. ¿Por qué? Porque sé que estoy haciendo un trabajo brillante, junto con mi esposo, para satisfacer las demandas de nuestra familia, sobre todo teniendo a un niño con una discapacidad. Y cuando digo “trabajo brillante,” a veces ese brillo brilla más cuando simplemente no me rindo aunque estoy agotada, cansada y llorando después de una estancia en el hospital, o un caos posterior a la operación… o más. Porque hice precisamente eso — no me rendí! Sé que en todo el mundo hay cientos de miles de padres que trabajan todo el día para criar a un niño con necesidades adicionales. Sé que gran parte del trabajo continúa en gran parte detrás de las escenas. Sé que muchos padres nunca han trabajado más duro en toda su vida hasta ahora. Así que la próxima vez que alguien cuestione tu “trabajo,” respira hondo y exhala lentamente. Planta tus pies firmemente en la tierra, ponte de pie y se en tu corazón y alma el trabajo increíble que estás haciendo. Sabelo, sientelo, emanalo. ¡Nunca lo dudes! Gracias por la increíble cantidad de trabajo que realizas para hacer que no solo tu hijo, sino el mundo, sea un lugar mucho mejor. Y por el trabajo (remunerado o no) que haces. Otros artículos en español: 14 Palabras Que Debes Considerar Cuando Eres Amigo de Mi Hijo Con Autismo Mi Hijo Con Síndrome de Down Sí Puede Mi Hijo Con Autismo No Está ‘Ausente’

Community Voices

Advocate Like A Mother

As mothers raising children with additional needs, we naturally advocate for our beautiful children.

Yet alongside this, we also need to prioritise our health and wellness to meet the extraordinary needs that come with this challenging yet incredibly rewarding motherhood experience.

It’s not always easy to find the time, space or energy, I get it. Let alone the fact that your child heavily relies on you, in some cases, for all of their needs.

It can bring up a strange sense of guilt for investing in our health, when they need ongoing support.

The past five years my husband and I have moved mountains for our beautiful daughter Chiara, we wouldn’t have it any other way, yet in the process our health declined dramatically.

With two hernia operations due to heavy lifting, ongoing broken sleep and moments of deep physical and mental exhaustion, something needed to change!

We sold our home, moved closer to family for support and prioritised on health and wellness for the entire family. My daughters also joined the local nippers at the beach and guess what? They have a program for special needs children – yes!!

When Chiara thrives, we all do. She’s like the barometer of our family.

So I am gracefully and gratefully taking this opportunity to regain my health, so I can continue to care for my myself and my beautiful family. My husband is doing the same.

I also have more time to continue to focus on my work and supporting beautiful mums from a much stronger foundation.

Our family life is better than its ever been {yes we are slowly regaining our fitness back and broken sleep is still at play} and making the decision to include ourselves into the health equation has created such sustainable change.

Prevention is better than cure. What are you waiting for? Start something now, create the change you need to thrive.

You can follow Natalie:

www.facebook.com/miraclemamacommunity

miraclemama.com.au

www.instagram.com/_miracle_mama_

The Powerful Community You Connect With When Your Kid Has a Disability

It feels like two opposing forces are at play when your child is diagnosed: 1. So much is taken away. 2. So much is gained. One minute I was a mum of a healthy 3-year-old, teaching yoga and enjoying family life. The next minute I was a mum of two beautiful girls, one healthy and one with a serious brain injury. Life’s circumstances suddenly placed me into a “different” category; the kind where the room falls silent when a pregnant mama says, “Oh I don’t mind if I have a boy or a girl, just as long as they are born healthy.” Where conversations would flow awkwardly from then on, like the elephant in the room, where I would try and act as normal as possible as if unaffected by the silent divide of women in the room. I was that mother. In the early days, my mind cycled on repeat through all the losses. It felt as though not only was my daughter’s health taken away, the way in which I was now perceived in society shifted. I felt the pity from strangers as they stopped and enquired why my newborn had a plaster cast, or why as a toddler she couldn’t hold her head up at times. I was that mother who had to have those bizarre kind of conversations that do not come so naturally with parenting. Instead of talking about a new milestone, a first word, or the first roll, or the first step, my conversations were vastly different. They were of long medical words that I would break down simply to try and explain the brain-injury to a friend, family member or someone in community. This phase of a newly diagnosed family can be exhausting, quite simply because everyone within the immediate family unit is grieving on some level. Yet so much of their energy is taken up in trying to fit back into society, with a new label that is been stamped upon them: a “special needs family.” It feels like everyone is trying to re-integrate, when the training wheels have been taken away, it’s wobbly, unsteady and so unstable. Then something starts to shift, the universe has a beautiful way about trying to rebalance and gain equilibrium. You start to connect with other families in similar circumstances. It’s both comforting and a little terrifying when you see a flash forward of what your child may look like in the future in a sea of adaptive and medical equipment. Your mind feels a little hazy when they tell you that your child will amaze you, that you will see miracles, that you will find so much joy, that it will change your life… and for the better. They will post photos of their children with encouraging words. You will see feeding tubes, wheelchairs, communication devices and more. It will feel confusing, as you are certain the only way you will ever find peace, is if a cure is created for your child’s condition. Here’s the mysterious thing, when the times comes, when really understand, no actually I should say when you believe what they tell you, real joy starts to unfold within your family. There is some point along the journey where you realize you have grown into your new and unique family life, and you find yourself encouraging those who have recently been diagnosed, too. You assure them that all will be OK, that their child will achieve so much, and most of all, that their life will change and for the better. The community of parents raising children with additional needs is a powerfully close one; we all share and follow in each other’s journey’s. We set up social media pages, blogs and not-for-profits. Together we advocate, create awareness and become like an extended global family. I don’t say family lightly, I mean it. We become like family. So much so, that we feel great despair at the loss of a child, as if they were our own. Our child’s diagnosis may initially connect us as strangers, but quickly bind us to be so much more. There’s a magical gift that occurs between families. Like a filter is taken away and we connect straight at the heart. What a powerful resource it is, that we can lean on one another, learn, educate and advocate together. That we can celebrate in all the micro-milestones and wins and create a circle of support when challenging times kick in. It expands our world to connect us with people that we would otherwise never have met. These people are your people. The children who through their sheer will and determination make us see what is possible, their siblings who teach us to embrace diversity effortlessly and to their parents, whose heart broke into a billion pieces and slowly came back together because of people like you.This community who found one another through a perceived loss, but in reality was actually a monumental life gain.

The Phases You Go Through After Your Child's Diagnosis

People often ask me what advice would I give to a mum who is coming to terms with her child’s diagnosis. To be honest, in those early days there is not much you can say to a grieving mum. It can feel that unless you have a cure or solution, there is nothing that can fill that void in your heart. Seriously, when you’re told your child may not live a long life, let alone experience great physical challenges all the days of their life, it’s a lot to comprehend, let alone accept. So I always start with compassion and allowing mothers a space to grieve, to honor their feelings around fear, anger, worry, exhaustion and loss. It all has its sacred place in paving a new pathway, which in the end, ironically has the potential to be one of the greatest gifts you will experience in their life time. I don’t need to tell them that though, they will by default live their way through all the ups and downs to find their own unique way of acceptance and meeting the road less traveled. The have every ounce of courage, grace and love reflected to them through their child’s eyes. Here are 55 phases that sum up my personal journey from complete loss and despair to miracles and magic. Some I moved through quickly. Others hung around to teach me painful, yet powerful lessons. I would not change any of my learnings, for they have been my greatest teachings. 1.Deep intuition that something just wasn’t right. The conversations with my partner of close family and friends that I was feeling concerned. 2.The responses from those around me, like “She is fine, you just need to rest,” “Don’t be so worried, everything will be OK,” and “See? She looks perfect.” Then comes the frustration that the world does no understand a mother’s heart. Why aren’t people listening to me? 3.“The talk” with the pediatrician, the tears, the worry, the letting it all go. The relief when she responds with, “Yes I hear you, let’s do some investigating.” 4.The “pre-diagnosis” meetings with the genetic team, the wishing I could read their minds as they ask me questions and go through each specific detail. 5.The test results that come back clear, yet I’m still feeling uneasy and unsure. 6.The next meeting with a team of genetic doctors who together ask more questions and I can see their tone shifting, changing. I know they know something I don’t. 7.The brain MRI test at the Royal Children’s Hospital with the hint of concern from the genetic doctor. “Yes Natalie, I think there are some very valid concerns for your daughter. Let’s wait and see what the tests say. 8.The pre-medication to make my daughter drowsy so that she would sleep through the MRI scan and remain still. 9.The look on the nurse’s face after the scan was over, and the compassion in her eyes. 10.The rush of blood to the heart when I heard the phone ring the next day. 11.The tone of the receptionist’s voice, “It’s urgent Natalie, we need to see you and your husband immediately.” 12.The long drive to the hospital with my mind circulating through probable scenarios. How bad could it really be? 13.The look of my husband’s face when I met him in the waiting room. 14.The dropped eye gaze from the doctors as they called us into the room, the feeling of dread rising through my being. 15.The words that started flowing and felt like a nightmare. 16.The shock of “never,” “no cure,” and “limited life-expectancy.” 17.The sobs and tears that fell onto my daughter as I held her 5-month old body close to my heart. 18.The confusion with medical jargon and the relief when they were clear and blunt — all I wanted was the facts. 19.Walking out of the hospital and feeling like I was falling into the abyss. 20.The rainbow that shone against the grey sky. 21.The pause where I made a pact with the universe to never give up, only to then be overcome by another wave of immense grief. 22.The aftermath of trying to share a complicated story to family. 23.The platitudes that came. 24.The wish for everyone to be silent unless they had a cure to heal my child. 25.The grief, oh the hours, days, and months of grief. 26.The desperate search, googling at 1 a.m., 2 a.m., and 3a.m. 27.The shutdown of social events. I just didn’t have the energy to show up to events and “play normal” when my life felt like the opposite. 28.The breakdown in communication with my husband. We were both grieving at different times. 29.The onslaught of appointments, phone calls, waiting rooms. 30.The pleas to God to please, please, please don’t let her suffer. 31.The surreal meetings about adaptive equipment and daily therapies. 32.The taking action and looking “outside the box” for help. 33.The continued search to help my daughter reach her full potential. 34.The deep meetings with incredible psychologists and healers. 35.The twinkle in my daughter’s eye. 36.The inch-by-inch milestones. 37.The getting familiar with hospitals and those tough conversations. 38.The feeling of the sunshine as it touched every fiber of my being. 39.The feeling of catching my breath again. 40.The transition back into life again and outside the bubble. 41.The 200th hospital visit and knowing the café staff by first name. 42.The incredible therapies that began to expand our daughter’s potential. 43.The long gaze into my husband’s eyes and silently saying to one another “Wow, we’ve got this!” 44.The confidence of a mechanic with all the adaptive equipment. 45.The waking up and realizing this is your new normal and life is going to be OK. 46.The connections with other families who get it. 47.The feeling like life expanded into a whole new dimension and I just woke up. 48.The strength, the courage, and the compassion. The forgiveness and the grace. 49.The belly laughs that bring you out of your mind and back into your body. 50.The connections to miracles and purpose. 51.The loosening of the tight grip of control and trusting in something far greater. 52.The inner knowing that in the big picture, everything is going to OK. 53.The moment where you literally live through a full 360 degrees; however instead of dread, overwhelm, and grief, you are happy, connected and supported. 54.The moment you truly let go and open up to literally a whole new world. 55.The expansion that life has shifted, lifted, and gifted you in the form of your beautiful child. You can follow this journey here Miracle Mama, Facebook, or Instagram

Love Over Fear: Caring for My Child in the Middle of the Night

We’ve had some rough nights with Chiara, walking the hallway as we take turns to try and soothe her little body. Running baths at midnight to help her feel comfort when she can’t find calm. I mix medicine’s under soft lights and watch the clock tick over from 12 a.m. 2 a.m. 3 a.m. and more. I carry her body as she drapes over my arms, so delicate, fragile and full of mystery. I reposition her limbs and try to help her find that space of comfort where she can rest and heal, beyond the labels of her medical conditions. So thankful my husband is with me through these twilight testing hours. Through this haze of broken sleep, exhaustion and ongoing physical care, we keep choosing to love over fear. These tiny micro-milestones of choice in the long run turn out to create some of the biggest shifts of our life, one small midnight moment at a time. We want to hear your story. Become a Mighty contributor here .

Parenting Kids With Disabilities Is Not Always About Mindset

You might have heard this before: “Change your thoughts and you can change your world.” Mindset is a powerful tool in our personal journey through life’s up and downs. Personally, I have challenged my own experiences to find a new perspective. However, there are some moments that no matter how much you fight for the light, the positive re-frames, the “it all happened for a reason” vibe…. nothing can shift your mindset from the experience at hand. Try telling a mum who is holding her child through their 40th life-threatening seizure, or comforting their child through a harrowing round of chemotherapy or administering CPR on their 2-year-old. The reality is, when your child has a serious health condition, it can be terrifying. The level of intensity peaks through the aforementioned examples. When it is as black and white as life or death for your beautiful child, mindset can take a back seat, at least for a moment. I want to shed light on the darker side, the uncomfortable side, the side that hurts so many mum’s and dad’s all over the world. Why? Because I always come back to one thing: that no matter race or religion, through history humans have always shared a similar innate wish when brining new life into the world — collectively we all just want our children to be born healthy. So when health is taken away from our most beautiful creations, our children, it challenges us to our core. Whilst I am all for new perspectives, new paradigms, new shifts; I will always honor the adjustment every parent needs to go through as they take on this new role of parent to carer, and in some cases full-time carer for the rest of their child’s life. I want us to hold space for these families in a way that allows them to be seen, heard and supported. In sharing my experience of having a beautiful child who also happens to have a life-threatening condition, I know what it’s like to grieve, to worry and to hurt. I also know what it’s like to transform and heal and make the most of this incredible unique motherhood experience. Yet let me share with you something that made me check-in again. I attended a local doctor’s appointment to get some medical letters for my child for equipment funding. After talking about my daughter and her current health issues, the doctor paused, looked me straight in the eye and asked, “How are you Natalie?”Guess what I replied? “I’m fine, yes I’m sleeping better. Yes, thank you I am fine, I’m OK.” But here’s the truth, in that moment I was actually holding back a flood of tears, maybe oceans, I am not too sure. I was surprised by my internal backflips, the knots that started to create in my stomach and the pinch in my heart. It reminded me that just under the surface of so many mama’s who are juggling serious health issues with their children, we rarely stop to take care of ourselves. Even with all the tools I have as a yoga and meditation teacher, a coach, a speaker and writer, at times I forget to really check in and ensure that I am OK. I took the doctor’s compassionate question as a little nudge from the universe to really stop and reflect. How am I? For so many of us we are doing great, seriously, we’ve got this parenting kids with disabilities or chronic health issues gig nailed. Yet just under the surface the tears, the worry, the grief — it can creep up when we least expect it. So what do we do with these sudden emotions that surface? How can we find solace in our child’s suffering? Because in some cases, our beautiful children do experience suffering enduring major health complications. For me, mindset is the light I keep reaching for when it gets dark, I believe our situations stretch us beyond what we think possible as we expand into this new role. Yet, for a an exhausted mama who has spent her nights in hospitals with a very sick child, positive mindset may be difficult to authentically take on. So while mindset is a powerful tool and one I know most parents raising children with additional needs naturally evolve into, I wanted to acknowledge that sometimes we need to honor the hard stuff. That just because we can’t find the silver lining on certain days, we are not failing, we are not playing the victim card. No, far from it. We are just experiencing the reality and fullness of our situation. We are responding in a human way to a situation that is indeed very challenging, yet holds the capacity for deep profound growth. So please, allow me to ask you mama, “How are you?” And if you are going through a rough patch, let this be a gentle but firm reminder to reach out and ask for help. Remember, you are living through a situation that humans since the time immemorial have wanted to protect their child from. So reach out, seek support and shine. A version of this post originally appeared on Miracle Mama. You can follow Natalie on Instagram here or Facebook here. We want to hear your story. Become a Mighty contributor here . Thinkstock image by vicvic13

I Parent a Child With a Disability, and Yes, It Is Full-Time Work

The sudden realization of the sheer enormity of the work I do came crashing its way into my psyche when I heard these five words: “….but Natalie, you don’t work.” The tone and insinuation in the conversation prior to that comment was suggestive that I didn’t work at all. I recall this conversation so clearly because I was literally shocked into silence. I didn’t even say another word. Instead, my mind began to unravel the past four years since my child was diagnosed and all I could see was an enormous amount of “work.” So much work, that not even my previous job in corporate for 10+ years and managing multi-million dollar accounts, even came close to the workload I have experienced since becoming the parent of a child with a disability. The hidden workload was obvious to me in this moment, because clearly the other person had no idea what went on behind close doors, waiting rooms, hospitals, therapies and more. I created this image of the day a parent receives their child’s diagnosis: Not only are they handed the difficult diagnosis, but along with it, a pile of paperwork is strapped onto their backs, twice as high as their height. I picture the families walking out of the hospital, dazed, confused and in a realm of sudden shock. This imaginary pile of paperwork attached to their backs gradually gets heavier as the disability journey unfolds. Not only are parents in the process of grieving for themselves and their children, all of a sudden they have been tossed into the confusing labyrinth of the medical system with so many unknowns. Now their entire world and calendar might revolve around hospitals, therapies, equipment, trials and more. Hospital Appointments It all starts here for some of us. In our case, it was the first place the doctors dropped the “D” words: diagnosis, disability, disease. All of a sudden, your child and their health is dispersed among different departments within the hospital. Neurology, orthopedics, genetics, developmental medicine, etc. Each department interconnects in some way, but you have to continue to place the pieces of the puzzle together so as a parent, you understand the picture as a whole. Each department requires their own medical tests, like EEG tests, x-rays, blood tests or the like. So often, each individual appointment branches out to other departments of the hospital where testing or results are required. Then if surgery is required, that adds a whole other complex web of appointments, preparation and after-care. The secondary effects of the child’s condition can sometimes create even more work and medical care than the initial diagnosis itself. Early Intervention and Services Then comes the links to early intervention services, independent companies or organizations that can help you navigate the system, associated therapies and equipment. Often referred to as “key workers,” they act like an advocate for your child. Sessions are scheduled fortnightly or weekly, depending on the needs of your child at the time. Specialist Appointments Now you remember when I was telling you about the various departments within the hospital and how different information was needed for each doctor? Well, same goes here. There is a team of specialist practitioners who do not work in the hospital, so you continue to book appointments which are ongoing, because your child’s condition does not go away. Thus, the care often gets more complex as the child grows and new needs are required to be met. Medical Paperwork We live in a paperless society more than ever these days with online services, but I have four massive folders full of medical paperwork, reports, tests. Reports that no parent would ever want to have associated with their child, medical jargon that seems surreal. Have you ever filled out a form which asked you about your medical history in detail? For many of our children, this section of the form alone would fill up many pages compared to most typical grown adults. Forms need to be filled out, filed, sent, updated… it goes on and on and on through each stage of the child’s growth and development. Calendar The calendar, oh my goodness, where to start? We have a month at a glance and it’s choc-a-bloc with our daughter’s appointments all year around. Then there’s your other children and their needs around schooling, social life and beyond. Then there’s the “Oh sh*t, it’s the school excursion today and I haven’t prepared the required things!” It’s getting to school drop off and pick up five days a week for your other child which is challenging when you have your child with a disability with you. Social gatherings take a back seat, not by choice, noooo way. We miss our free social spirits that flowed before our parenting lives changed with the birth of our second child. It’s like walking on a tight rope, there’s not much flexibility to break the fall, so you need to prioritize your own child’s health and families needs above all else. The Mental Load The to-do lists grow and expand, with the constant adjustment and reshuffling of time slots of therapies, specialists and hospitals. Long wait times on the phone are part and parcel of this gig! You have to make sure you’ve planned meals for the family and child with a disability, which is often disrupted due to time spent in transit, waiting rooms and appointments. Then there’s all the little things like remembering to put the bins out, home maintenance, school concerts, gym classes, readers, school homework. It’s the juggle between their child with needs, their other children and yep, you guessed it — themselves. Then there’s the constant worry. Many parents of children with disabilities fall asleep at night worried if their child will make it through the night. Can you just stop for a moment and re-read that last sentence? Take a deep breath in and out. Can you even begin to imagine the anguish that comes along with that? For many children, their medical needs are serious and life-threatening, and that alone is a massive job for any parent to bare. Some families live with constant medical machines in their houses beeping through the night, alarms to wake the parents should their child have a seizure, or medications to administer and more. Many living with the constant fog of worry and exhaustion, making patience and perspective feel so far away. Health/Self Care We hear it all the time: look after yourself first. In many cases it’s just not possible given the child’s ongoing needs. And this is where the self-care space can get a little tricky. There’s this emotion called “guilt” and I tell you, so many parents of kids with disabilities and medical needs experience it. Guilt for placing their needs first, or for taking time out for respite. The facts are, unless you prioritize your health and wellness, you will not be able to provide the exceptional level of care your child needs. A rested parent, especially under the circumstances of complex health conditions for their child, is paramount. Physical workload and Preparation The amount of extra physical care and effort that can go into the day-to-day is huge. Dressing: children who perhaps are unable to sit, stand or help to facilitate the dressing process. There’s lifting, moving limbs and balancing shifting weight. Lifting: there is a lot of lifting of growing children into multiple pieces of equipment, like a wheelchair, toilet seat, shower seat, standing frame. There’s moving them from room to room, in and out of the house, then out into the world. Just a quick trip to the local supermarket can be pretty involved. Organizing: the preparation involved to ensure that the right piece of equipment is available, or else you may be stuck at home if your partner has accidentally taken the car that day. There’s not many plan B’s if you have a child who cannot sit or walk, and you don’t have any equipment. Feeding: safe feeding with puréed food as some children are at risk of aspirating or tube or PEG fed. Communication : deciphering your child’s needs when there is no verbal speech can be difficult. Again, a complex amount of time and space is taken up by parents wondering, did they provide the right thing at the right time? Was their child hungry, or did they have an itch on their back that they couldn’t reach? Did they need to go to the toilet, or did they want to wear the other shoes. Were they feeling unwell, or were they just extra quiet. The guessing game alone can take up so much mental space. So let’s rewind back to that initial conversation, you know, the one about “working.” Now, I could have responded by saying I created two websites. One for my child to help to further advocate and share our journey in the hope to help her in any way possible. That I was the sole content creator and responsible for responding to every single message that came my way from a parent in need or the community in general. The other website created to build an online business and support other mums, like me, whose motherhood experience changed in an instant. I could have explained I completed a globally recognized coaching course I completed in random places, like waiting rooms, hospitals, midnight wakes after resettling my child, in the car listening to the course modules and during times of respite. I could have explained how many times I just felt like throwing everything into the “too hard basket,” and giving up. Yet through all the ups and downs, I continued to try and make the best of our challenges while also trying to help others. I could have explained I was using every inch of my energy to try and create a space for which I could still work and honor being a full-time carer. I could have explained so much more. Yet I didn’t. Why? Because I know I am doing a brilliant job, along with my husband, in meeting the demands of our family, let alone a child with a disability. And when I say “brilliant job,” sometimes that brilliance shines most when I have simply shown up — exhausted, tired and in tears after a patch of hospital stays, or post-operation chaos… or more. Because I did just that: show up! I know across the globe there are hundreds of thousands of parents who are working around the clock to raise a child with health conditions. I know so much of the work goes on largely behind the scenes. I know that for many parents they have never worked harder in their entire life until now. So next time someone questions your “work,” please take a deep breath in and slowly exhale. Plant your feet firmly on the earth, stand up tall and know in your heart and soul the incredible job you are doing. Know it, feel it, emanate it. Do not for a second question it! Thank you for the incredible amount of work you do in making not only your child — but the world — a much better place. And for the work (paid or not) you do. A version of this post originally appeared on Miracle Mama. You can follow Natalie on Instagram here or Facebook here. We want to hear your story. Become a Mighty contributor here . Thinkstock image by Koldunov

To the Moms Who Raised Children With Disabilities Before the Internet

Imagine for a moment you just received your child’s diagnosis. There is no world wide web, no emails, no Facebook, no Instagram, no other social media and no smart phones. Imagine there is little support and awareness. The stigma around disability is still rife and therapies and services are not readily available. Imagine the isolation, the fear and the worry. This has been the reality for so many parents who have come before us. It’s not uncommon to hear stories where they were encouraged to put their child in a home before even considering any possible potential. Imagine. I often reflect on the mamas who were raising children with additional needs before my time and wonder how on earth they did it. To those mamas: Thank you for leading the way for so many of us through a time that must have been incredibly challenging. Thank you for being brave enough to choose love over fear, and for raising your child with the limited resources you had. Thank you for moving mountains for your child in a world where people did not understand their brilliance. Thank you for reminding us what is possible within ourselves as women and mothers. Today we are blessed to be living in an age where technology advances provide a whole new level of potential for our children. Although it can still be a very isolating experience and social media can make us feel like we are not “doing enough” for our child. So we need to be wise with how we use it and know that whatever we are doing it is already enough. So I wanted to remind you mama of three key points: 1. Reach out for support. 2. Stay open to receive help (without any other mama guilt). 3. We are not meant to do this on our own. We want to hear your story. Become a Mighty contributor here . Thinkstock image by LSOphoto

To Pauline Hanson, From the Mother of a Child With Disabilities

I dropped off my daughter Chiara to her kinder group this morning. It’s not a “special” school that caters for children with disabilities. In fact, it’s a mainstream environment where Chiara can experience life like any other toddler her age. This morning as I carried her into the room, she was greeted with a group of kids running up to her with excitement. “Ki-Ki is here,” “Hello Chiara,” “Yay, Chiara has arrived!” As I placed Chiara into her chair, these kids were hugging her and she was laughing with joy back. I could see the beautiful exchange of human diversity, love and joy that expands past any physical or verbal limitations. I could see a group of young children who by the mere experience of sharing time with a child with neurodiverse needs, bring and gain gifts and insight. I see a room full of children who connect with Chiara. There are no concerns that Chiara cannot sit, walk, or talk. There are no concerns that their needs are not being met. There is no hierarchy between who should receive more education than the other. I see a room full of educators who include every child and provide each of them with the love, guidance and care they deserve. I see a room full of acceptance and understanding. You won’t hear comments like Pauline Hanson’s: “We need to get rid of those people because you want everyone to feel good about themselves” in these parts. In fact, you won’t hear any of this bulls**t, because Hanson, this community doesn’t need to exclude others in order to feel good. That’s the thing about living an authentic human life. If there one thing that I have learned as a mother to a child with disabilities it is this: communities, families, friends and the world at large are far better off where there is inclusion and shared experiences of all people, whether asylum seekers, aboriginal culture or neurodiverse. They shine a light through fear, ignorance or greed, and bring us all to a deeper level of the human condition and the essence of compassion and love. Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by OK Six.

Seeing Love in Hospital Visits With My Child

Hospitals are just as part of my motherhood experience as local parks. I’ve walked their corridors hundreds of times. I’ve been in pre-operation wards to post-operation wards. I’ve sat in genetic doctors’ offices, along with neurologists, speech pathologists, orthopedic surgeons and more. I’ve watched my child as she was wheeled into the operation room. I’ve tried to soothe her as they place the anesthesia mask over her mouth as she tried to fight it. I’ve watched her wake post-operation in a hysteria. I’ve carried her fragile body in heavy half-body casts. I’ve tried to hide any feelings of worry and anxiety as she looks to me for help. I’ve meditated in waiting rooms. I’ve prayed for strength. I’ve cried with my husband as this side of the journey hurts. I’ve surrendered in deep trust. I’ve sat in respite rooms and practiced deep breathing. I’ve seen parents pushed to exhaustion in waiting rooms and hospital wards. I’ve seen chaos in the pre-op room, heard cries of children in fear and families not knowing how to manage. I’ve waited in post-op rooms with other parents who are nervous, worried and concerned. I’ve walked out of the revolving doors of the hospital in tears, or elated, or angry or stronger than before — depending on what was going on with my daughter’s care at the time. I’ve danced out of the revolving doors when she was released from the hip-spica (half-body) cast. I’ve walked past cancer wards, sat in intensive wards and lay down in the prayer room. Looking at this image reminds me of the fullness of our journey. How far we have come. Only moments before, this room was full and chaotic. We have no idea where our journey is heading, how long our daughter will be with us. But of everything I have seen and mentioned above, I’m always guided back to one thing — love. The love from a parent to their child in a hospital is palpable, and it’s quite extraordinary to bear witness to it. The love I’ve seen in my hundreds of hospital visits highlights the incredible human spirit — what we are capable of as parents and equally what the children are capable of after everything they endure. We’ll always have love. And in my time as a special needs mum, it’s been my absolute saving grace. When all else is lost, and I’m scrambling on my knees trying to piece back all the parts, I find love. To all the parents out there who love fiercely — I see you, and I see your love. Thank you. Follow this journey at Chiara’s Journey and Miracle Mama. We want to hear your story. Become a Mighty contributor here .