To My Mom, Who Ignored My Doctor’s Prediction About My Future With Cerebral Palsy

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Nobody can predict the future, that’s for sure. Yet, in my infancy, my doctor tried to predict my future based on a blank page, which is what I feel a newborn is.

Still, the doctor tried to predict my future. Based on his predictions, I would have a miserable life. No hope of improvement was given to my parents. They had to find hope and strength on their own.

Juana Ortiz, left, with her mother
Juana (left) with her mother.

I imagine my mother carrying me in her arms, thinking my future was uncertain. This was a time when there wasn’t much information about cerebral palsy, the type of treatment available or the life expectancy. Back then, people with disabilities could be strongly discriminated against, especially in undeveloped countries like my native country, the Dominican Republic.

Now as a grown-up, I ask myself many questions: How did my mother feel hearing the doctor say that her daughter had cerebral palsy and would never would be able to walk, talk or eat on her own? How did Mom feel when she was told her first child wouldn’t be able to have a good life? How did she feel knowing her newborn would have to rely on somebody else to complete the most “simple” tasks, such as eating, taking a shower or using the bathroom? What crossed through her mind as she was hearing this diagnosis?

Forty-three years later, the words “thank you” aren’t enough to express my gratitude for everything she has done for me. This is what I would like to say to my mother: Thank you, because you raised me with my disability like any other child without over-protecting me. Thank you for giving me freedom to make my own decisions. Thank you for your support and encouragement and for never giving up on me when my future didn’t seem bright. And, most of all, thank you for not listening to that well-meaning doctor all those years ago — for, together, we have proven him wrong.

Juana Ortiz’s latest book “I Made It” is available at www.juanamortiz.com and on Amazon.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please send a blog post to [email protected] 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.

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6 Things a Teen With Cerebral Palsy Wants New Parents to Know

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I cannot begin to imagine what it is like to hear the words “your child has cerebral palsy,” because I have always been the one to have CP. It is all I have ever known, but does that have to be a bad thing?

When your child is diagnosed with cerebral palsy, I imagine you will have thousands upon thousands of questions about your child’s expected progress, abilities / disabilities, meeting milestones and so much more. These questions can’t be answered in any great detail right away — with the vast majority left to the “waiting game.” You may research CP in the hope of finding these answers, or at least a bit of support in this new unknown world for you and your child. Everything I can tell you is purely based on experience over the last 18 years. Cerebral palsy is unique to everyone and part of quite a large spectrum, but I hope it can at least give you a possible glimpse into the future: highs, lows and everything in between.

1. They will surprise you.

Doctors have a way of erring on the side of caution and making predictions based on little information right from the start. However, people with cerebral palsy are often determined, even a little bit stubborn, to challenge these predictions. I may not have received my CP diagnosis until the age of 7, but being 8 weeks premature made even surviving a matter of fighting the odds. At that moment in time, it would have been impossible to know the next 18 years and all the challenges that have come my way, and also all the victories! It may have taken longer to walk, run, ride a bike, tell the time… but woe betide anyone who says I cannot do anything. Even if it may take your child longer, that can make it even more special when they get there. Your child will have their own unique milestones and their own victories, no matter how small.

2. There will be frustration.

I would be lying if I were to say it was all plain sailing — but isn’t that the case with everyone? The hospital appointments, the physiotherapy, the urge to fit in with peers — at times, it can be incredibly difficult and I have shed many tears. When I was younger I was such a girly-girl; everything had to be pink and pretty. Trainers and a splint didn’t really fit the look I was going for — all I wanted was nice pretty shoes. We spent hours in shoe shops, with a few shoes thrown in sheer anger as the “perfect” pair of shoes wouldn’t fit over my newly cast AFO splint. People with CP are resilient, we have to be, but that doesn’t mean it is all progress.

3. Family and friends can be a great support.

The support you can get from friends and family can be fundamental. At the end of the day, we all need a little helping hand — some people just need a little more. Also, I have found that having friendships with other young people who have CP can be incredibly valuable. When you are having a rough day, the opportunity to share similar experiences and know you are not alone in all of this can help. It can help to talk to adults with CP who’ve already been down the same road. For example, I am planning to attend university, and I have found speaking to other young people who are currently students to be really reassuring.

Chloe taking a selfie with Minnie Mouse.
Chloe taking a selfie with Minnie Mouse.

4. They will be amazing at adapting.

Who says you have to do everything just like everybody else? From personal experience, I know that sometimes it is actually easier to do things in your own way, in order to get the same result as everyone else. This could be mastering tasks with one hand such as tying shoe laces or eating a meal. Adapting is often part of every day, and at times it can be difficult to come up with solutions, but you do get there. For some people adapting can include the use of certain equipment in order to gain independence, and from experience I know this can sometimes result in a love-hate relationship. However, it can allow loads more freedom and the ability to achieve much more. It may just take time to adjust to these adaptions.

5. Humor will get you through.

Sometimes you have to laugh, even if it’s just so you don’t cry. Laugh at the fact that you have ended up on the floor… again! Laugh at the fact you did something and might have looked a bit silly. Yes, at times this can be hard, and laughing isn’t always the answer — but it will certainly help. “When you find humor in a difficult situation, you win” — I believe this is so true, and certainly a quote to live by!

6. The diagnosis is a very small part of your child.

Your child is not the diagnosis they have been given. They are not solely the label put on them without permission. First and foremost, they are your child, who happens to have cerebral palsy, just like they happen to have blue eyes or brown hair! A diagnosis may seem like it is taking over at times, but really it is only one piece of the thousand piece puzzle that makes up a child. Having cerebral palsy can open so many doors and opportunities; it can make your child unique in the best way possible. The diagnosis is what you make of it. Turn those obstacles into opportunities, don’t look back and never ever put a limit on what you can achieve.

Follow this journey on Life of a Cerebral Palsy Student.

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 [email protected] 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.

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4 Ways I've Built a Better Life With Cerebral Palsy

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Hard thick plastic encompasses the whole of my lower leg. Vibrant red Velcro straps hold my leg in its sturdy grasp. Stiff but safe steps I walk. Heat radiates from my skin inside my trusty friend the brace. Shoes groan in pain when they stretch to let my plastic foot in, only to be smashed in return. The best and worst friend would hold my body prisoner for the day. The moment that air would caress my sweating skin outside the brace was no doubt one of the most exhilarating freedoms I saw in those times. I stumbled around like a calf just learning how to walk with weak, unused muscles. The clock chimed 12, and time would escort my brace arm in arm to me in the morning.

I went through this every day until I was released at age 15. My braces were my best friends, but I was lucky enough to be let go. I have a milder class of spastic cerebral palsy. Cerebral palsy is different for every person. There are always going to be challenges. It’s easy to imagine all the possibilities if CP wasn’t a part of my life. However, these are the cards I was dealt, and I am choosing to see the light instead of the dark. Here are four tips that have helped me, and I hope will help you too.

1. Know your limits.

I once went on a series of walking tours through New Zealand and Australia for two weeks. No thought of how hard it would be on my body ever crossed my mind. The trip was going to be amazing, no matter what. I didn’t want to be left behind by the group, so I pushed myself to be able to walk with them. By the end of the first day, my whole body hurt from my upper back to the bottoms of my feet. I kept pushing myself to keep up day after day. With my exhaustion came a person that snapped at others with growing irritation as the days went on. I was miserable, in pain, and couldn’t care less about what I was seeing at the end. My body had reached its limit that first day because I didn’t pace myself. The walking tours were really hard, but I could have saved myself some pain and grumpiness if I had paced myself, rested whenever possible, and didn’t push quite as hard. It probably wasn’t my best idea to go, but I did and survived.

Now I make a point to listen to my body. I still push myself when I have to, but I know which lines to cross and not to cross. Know what you can do, can’t do, and when there’s a grey area. However, you never know until you try!

2. Communicate and ask for help.

I hated asking for help when I was young. I would try to be as “normal” as possible. As my mother would say, I’m a glutton for punishment. If everyone was going upstairs, that’s what I would do, even if there was an elevator. I would ignore the accommodations the teachers gave, and hand write everything I could until my hand gave way. Exhaustion stuck to me like glue. There were times where it worked, but often I would be forced to ask for help because I really did need it.

Asking for help is humbling, and for me an everyday occurrence. I had the realization one day that asking for help is absolutely fine when you need it. You are still capable. Asking for help doesn’t mean that you can’t do anything. People aren’t going to judge you for needing help. It’s better to communicate what you need rather than leave people guessing. Do what you can and then ask for help.

3. Have a goal.

Sometimes it’s easy to get lost in the midst of routine and everyday clutter. You settle for what you have, or you don’t have time to think. I tend to get stuck in life. If there’s nothing to do, I sit on my butt and Netflix. Having a goal motivates me because I am getting something I want out of the process. Goals move a person forward, even if just a little bit. As a person with cerebral palsy, I think it’s important to always be challenged to improve, even though it can be hard just to function sometimes.

Besides motivation, goals bring hope that something is going to change. I need that hope to be able to go through my day. It doesn’t have to be big. Right now I’m practicing having balance on stairs. Every day I work on lifting my foot up on a step without falling. Make a goal that is small, and something you can do to improve yourself.

4. Go at your own pace.

It’s really easy to compare yourself to others in this society. Does survival of the fittest sound familiar? I will never fit into that category, ever. It takes three times more effort and energy for me and many others with cerebral palsy to accomplish what comes easy for an able-bodied person. All I see are the backs of others when walking, because even among friends I am the slowest. It’s easy to feel inadequate when others seem to be able.

You are your own person. We have challenges that most people don’t. Life is not a mold you have to fit. Everything can be accomplished if you just keep working. I have so many regrets because I decided I would never be good enough and quit. You can do it. It doesn’t matter how long it takes.

A very wise woman told me that “done is better than perfect.” If perfect is a person rushing around without stopping to think, I never want to be perfect. Go your own pace in life. It may look totally different than the person next to you. The tortoise beat the hare because no matter how slowly, he kept going. Don’t ever stop!

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 [email protected] 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.

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When People Judge Me for Having More Children After My Son Was Born With Disabilities

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I have been blessed to be Mommy to my son for nearly six years now. For me, parenting has had more than its fair share of ups and downs. While my friends are toting their kids to karate and ballet, I am taking my son to one of our roughly 8-10 hours of therapy a week. My son’s first diagnosis came eight weeks into my parenting journey. There I was a new mother, scared my child might die, unsure in my ability to provide all that my son needed and determined to handle whatever may come. Many words and strings of letters joined that first diagnosis over the last five years. Conditions called epilepsy, cerebral palsy (CP), language delays and finally autism. It was during these early weeks post-diagnosis (or the PD period as I jokingly call it), that I found out I was expecting my dear sweet daughter.

While most pregnancy announcements are met with joy or at the very least an expected “Congratulations,” my announcement was met with a slew of “Are you ‘crazy?'” or “You are going to abort/adopt, right?” At the time I was unaware there are many people who believe that once you have a child with special needs, you are expected to not have any additional children. While my son’s condition is not genetic, it was assumed that my then-unborn child would be like her older brother. After her rather unremarkable birth, I received comments of how beautiful she was, followed by “So you’re done with kids, right?” It was assumed my daughter’s healthy birth was the fluke.

Even as my son and daughter grew and my son made progress beyond all of the expectations originally set by our doctors, a stigma still lingered that I was wrong to have my daughter and raise her with her disabled brother. When my younger son arrived much in the same way his sister did, I was really “pushing my luck.”

It’s funny in a way, that those who do not have children are often the most opinionated about how a child should be raised. I was being unfair to my daughter and younger son by bringing them into this world to be “burdened” by their older brother. It was unfair to them to share attention and love because their older brother had so many needs. They would be embarrassed. They would resent their father, their brother and me for all of this. The most common judgment I have heard over the years was that I should have never had other children, because they might have been like my eldest — because everyone knows that a non-genetic condition is likely to happen again.

As I write this, I am awaiting the birth of my fourth (and last) child. If he is healthy, I will be blessed. If he is unwell or has special needs, I am still blessed. Every child, no matter what their strengths, weaknesses, needs, ability, or diagnosis is a blessing. All of my children are a blessing, and no social stigma about disability will ever change that.

Nicki's family.
Nicki’s family.

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 [email protected] 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.

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To My Teenaged Self Who Felt Like a 'Weirdo' for Having Cerebral Palsy

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Dear Younger Molly,

I’m writing this letter to a beautiful teenage girl who needs to know her worth is far greater than she could ever imagine. Molly, I know being a teenager sucks, and I know very well the pain you have battled from within your soul because you haven’t yet accepted that you are “different.” You feel as though cerebral palsy makes you a “weirdo,” or at least that’s what those who have bullied you for many years have made you believe. I’m so happy to be able to let you know that your life will get sweeter eventually.

I want to emphasize two things about you that desperately need to be corrected: First of all, those who think they know you really don’t have the slightest clue, and their opinion doesn’t matter. Secondly, you have a tendency to want to please and impress others; you need to stop that, because there will be people who will always reject you, but you have friends who will always love and care for you. Learn to live to make yourself happy.

Your love of school and learning will only continue to grow; you will finish college with honors, while making several loving friends along the way. The four years that you spend in college will be one heck of a roller coaster ride; you will make mistakes, but you will also learn a lot. Determination is a quality that will help you soar in the future; it will help you to overcome the identity crisis and the depression that you have battled with for so long, and for that I’m so proud of you. Molly, you are such a fighter and you don’t even know it; I realize it’s hard to see past the limiting labels you’ve been given. You are smart, talented and beautiful; don’t let the hurtful words of others get to you.

A change in the world is needed, and I have faith you could be the voice of so many who are struggling, simply by expressing yourself through your writing. You have such a sparkling personality, and even though it may take you a while to find your place in the world, when you do you will! Chase your dreams and embrace the people who love you, and forget those who don’t. Please don’t be anything more or less than what you are. You will make it! I promise! Keep going, because you are in the position to possibly change someone’s life. I hope one day you will be able to see that your disability is not a disability at all; instead it is a chance to take a stand and advocate for acceptance of those who have been labeled “different.” I can’t wait to see everything unfold.

Molly as a teen.
Molly as a teen.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. If you’d like to participate, please send a blog post to [email protected] 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.

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When Kardashian Kids Posted a Photo of My Daughter With Cerebral Palsy

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fin on instagram One morning I woke up to the Kardashian Kids (the Kardashian family’s children’s clothing line) tagging us on Instagram and reposting a picture of my daughter in one of their dresses. In the photo, she’s standing in her walker. This account has more than a million followers, so this was a big deal to us. I thought, “Wow! This is possibly bringing cerebral palsy awareness to a million people!” I reposted the image and was proud of the platform we were provided with.

As I went to text my sister and cousin, I began to get bombarded with notifications. Mostly supportive, but the ones that stuck out were angry at the negative comments left on her picture.

Negative comments? I was scared to look. I had never had this emotion as a parent yet — fear of judgment. Of course I’ve felt that for myself, but never for my 2-year-old child. I immediately thought, “Oh my goodness, what did I expose her to?” I debated asking them to take it down.

Then, my direct message box began filling up with notes from other special needs mothers. You see, right after we received Fin’s diagnosis, I felt so alone. I believe all parents do. So you can imagine following all of these popular kids shops on Instagram and then one day seeing a child like yours in the feed.  Many of these precious mamas said they were “in tears” that they found someone like them!

Most moms post pictures of their kiddos in cute outfits, going to dance, soccer, swim, what have you. Yet, when your child requires medical assistance, you may have a different thought process behind posting these simple picture. I’ve always felt the need to address this issue. I’ve heard a few people around me say I’m “exploiting” my daughter. It makes me sad because I’m merely a proud parent just trying to bring more awareness for something so my child may feel more accepted. So far, it’s worked. People immediately comment on her, rather than her medical devices. I feel I’ve been able to use our Instagram account to spread the right kind of awareness. I’m so grateful for each shop that reposts one of our images because it brings more awareness and acceptance to children with special needs. I’m grateful for the Kardashian Kids post because I feel it made a mark for the CP community and was an eye-opener for others.

Back to the negative comments for a second. One commented, “forehead fo daysssss.” Others asked, “Why is her head so big?”

The words were cruel. Along with cerebral palsy, she has “macrocephaly,” a medical term for “large head.”

A lot of people sang the Kardashian Kids praises for posting “diversity,” and a lot of strangers came to our defense. People kept asking me what I was going to do. What could I do? I wasn’t about to start one of those pointless internet debates. This is all part of being public and trying to teach people about something. There’s an ugly side to being an advocate. Bottom line, some people are just rude. This was quite the lesson, and I took the beating.

The next day the Kardashian Kids sent me a message: “Hi Christina! I hope you weren’t upset by the ignorant comments on the post. The ignorance in this world never ceases to amaze me. There was so much love and support for little Fin, I hope you have gained a lot of kind, supportive followers. Xo”  You know what, KK? We did, and thank you.

To the rude Kardashian Kids Instagram fans: Thank you for showing us a glimpse of how rude and ugly the Internet world can be. I hope you feel really proud of all the things you wrote. I somehow know you would never have made these comments in person. Attacking a child’s appearance is never OK, regardless of how “harmless” you feel it is. I hope you try to troll the Internet with positivity because then you will actually help out in making a difference. Everyone can be negative. Just try saying nice things and see how good it makes you feel. I promise it will.

Follow this journey on The Waiting Room.

WATCH BELOW: Secrets of Being a Special Needs Parent

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