When someone is processing through or dealing with the severe medical issues that come with their kids with epilepsy or all the stress that comes with autism, a common thing people tell us is that we are super mom’s. Or tell us that we are so strong.
Their sentiment is to empower us. To make us feel strong and confident. But what it actually does, is it isolates us. The person saying “I don’t know how you do it” or “I could never handle what you’re going through” is said with good intention but for us, we just feel scared and freaked out and totally unprepared. Words like this just solidify that we are alone. Part of this makes us realize that we aren’t invited into the normal group of mom’s anymore. We got kicked out of that club. Now we are in survival mode and since we are “super moms” we are supposed to know what to do at all times. But we don’t have a clue what we are doing. Supermom is a pretty big label to live up to, and if anyone really knew how we were really doing, they would take back THAT statement in an instant.
We are trying to make the best decisions for our kids while at the same time trying to manage behaviors and learn how to teach them. We are busy learning and dealing with insurance companies and doctors and specialists. If we have other kids, we have to make sure they get their attention too.
If we are working parents, we have to find childcare that’s capable of taking care of our kids and who is also trustworthy. We desperately worry about our kids while we work and hope we don’t get fired for slacking or taking so much time off.
If we are Stay-at-home parents, we desperately dream of a break or just some time to ourselves. But if we ever get that time alone, its spent researching and making appointments and scheduling all the stuff. We desperately wish we could work. We need the money and also the break, but we don’t trust anyone to take care of our kids, or others don’t trust themselves with our kids.
Then there are our kids. We watch them not develop the way we know they should. We worry they never will, and we’ll have to take care of them forever. We worry about their adulthood. We fear they won’t make friends or have any sort of normal childhood. We’re in love with our kids but at the same time resent their disorder because it makes them different, it makes them suffer, and it makes our life hard. Really really hard. We don’t know if we’re equipped for the job.
This is a recipe for anger and denial and depression. This is a recipe for grieving.
How Can I Accept Something So Horrible
When I say the word acceptance, there’s a part of you that wishes and wishes you could accept this but another part of you that feels like “hell no, I will NEVER accept this.”
no child should live like this, and I would never condone it for anyone, let alone MY child
Now the reason why I am talking about this is that my entire perspective and view shifted when I got to the point of acceptance and I want that for every single parent raising a child with autism or epilepsy or any kind of special needs.
Why autism and epilepsy? Well, because that is what I have experience in because my daughter Remy has both of those things. She has a disorder called pcdh19 which is a genetic disorder that causes her to have epilepsy and autism.
What Life Looked Like From An Outside Perspective
I also wanted to talk about this because, from the outside, I appeared like I had it all together. Seeking out the best medical team, getting Remy all the services that she needed, taking classes and doing research and developing friendships with other moms in my same boat.
From the outside, I looked like I was strong and had it all together. But the inside, my happiness, my stress level, my ability to enjoy life, enjoy being a mom, my fear and anxiety on the inside was a mess.
I remember getting an autism diagnosis for Remy. I already had a good idea that she had autism but not knowing a thing about it, I had to learn. Google was my friend. I found myself googling “curing autism” and “diets to reverse autism” I started searching for articles that would tell me that there are people with autism who lived in the world and no one knew. Like maybe autism could be our little secret. When Remy started having seizures, I thought that there was no way this was going to be a lifelong issue, I thought the only thing we needed to do was get her on the right medication, and even if it didn’t cure her, it would surely make seizures not a part of our world. Give her a pill and move on.
When I realized that autism and epilepsy weren’t something that we could just quickly fix, I started to see others that represented the worse case scenarios, and it scared me. I saw the people who had hundreds of seizures every day and spent their lives in the hospitals. I saw people with autism who couldn’t walk or talk and had to be pushed around in wheelchairs.
The only solution, was for me to fight. Fight and resist every part of it. I was going to protest God and get his attention enough to change my life and child. It sounds totally irrational, but those are the games we play in our head when we are up against the corner. Whatever I could do NOT to accept it.
But the more I fought, the more I realized it was doing no good. Whenever there is a war against something, it always leads to catastrophic results. We have a war against drugs and drugs and crimes are at an all-time high.
So if I have a war against autism or epilepsy, it’s only going to hurt Remy and everyone else around her. So I realized that me NOT accepting autism and epilepsy was only going to make everything worse.
So because I was in a place of resistance, where did that leave me? Depressed is where that left me. Angry depressed and hopeless. I resented epilepsy and resented autism and resented being a mother altogether. I didn’t have the answers, and no one I knew had had them either.
What It Looks Like To Not Accept
So where does acceptance fit in the picture?
Acceptance is the last stage of the grieving process, but that doesn’t mean that everyone who grieves gets to this stage. If you take any one of the stages of grief, people can stay there forever.
Have you ever met that person who is always angry about everything? They are defensive and blame everyone and everything for why their life sucks and how they deserve this and that. That’s the person who accuses the government about their financial problems, the food industry about their health problems, the neighbor’s yard about why their house didn’t sell. It’s always someone else’s fault, and they’re always the victim.
Have you ever met that person who is in such denial about something that they could have a 20 pound tumor on their nose and they would respond “what tumor” Or the person who gets lung cancer after smoking 2 packs of cigarettes for 30 years and says their cancer has nothing to do with the cigarette smoking.
Have you ever met that person who becomes so isolated from depression that they are just locked away in their house and never come out? That’s an extreme example, but it happens.
I used to have neighbors like that. A husband and wife. They were so depressed and isolated, In the 15 years I lived next door to them, I only saw them about four times. I remember my grandma telling me that before I was born, our neighbors were active and vibrant in their community and the husband was a DJ at the local radio station. But as long as I was alive, they were so depressed they became recluse. I never did find out what happened to them to cause that, but it was so unfortunate. I imagine that they suffered some sort of tragedy or illness.
Whatever tragedy that occurred threw them into such despair that they were never able to recover from it. I remember when this couple died, there was so much mold and water damage and they had hoarded themselves into a tiny area of their home. The entire house had to be gutted and practically rebuilt. All the neighbors tried to help them, mowing their lawn, going grocery shopping for them, but they weren’t receptive to any of it.
But anyway, just because you have a child with special needs, just because you have gone through the other stages of grief, does NOT guarantee that you will get to the acceptance phase.
We all know those stories about the parents that never accepted that their child was different. You hear this ALL THE TIME with the LGBTQ community. Parents will try and make their kids ‘straight’, or disown them for being gay or not tell anyone that their child is gay — the same thing with having a child with autism or epilepsy or any kind of special needs.
But since we are on the subject of the LGBTQ community, look at the difference in the people whose parents totally accept them being homosexual and look at the people whose parents never accepted it. For the people who grew up in a home where their parents accepted them from the very beginning, who embraced them and was proud that they were brave enough to be themselves, those are the people who tend to be more confident, more courageous and have a high sense of self-worth.
The people who have been shamed and disowned and denied or repressed for their sexuality, tend to be ashamed and shut down and have a higher rate of depression and suicide. They tend to wonder what is wrong with them and wonder why God made them different. Now, of course, this doesn’t mean that everyone who grew up in a home where their parents didn’t accept them end up depressed and withdrawn, but there’s more of a chance of that happening.
And you can apply that to a child that has autism or epilepsy. For the parents who can accept their child’s diagnosis, their children have a better chance of thriving than if their parents were always in denial, or angry or dismissive of their condition. Some people think that their kids won’t notice, but what I have noticed, is that people with special needs can feel that non-acceptance energy more than anyone else. They rely less on words and more on energy and tone and feeling.
Now what I am NOT saying is that the kiddos who are more dependent or need more care always come from homes of parents who don’t accept them, I’m just saying that if you want your child to be their best, whatever that looks like, the first step is to take them exactly how they are.
If they have autism, accept that they have autism and love their quirks. If they have epilepsy, accept that they have epilepsy. I’m not saying that if they have epilepsy that you don’t treat their seizures and just sit around passively doing nothing. I am not saying that someone with autism you should just let them figure out life the way that they are. No, people with autism need help and guidance and same with any other neurological disorder or any type of medical need. But helping in a state of resistance and resentment is much different than acceptance and unconditional love.
The Book That Shifted My Perspective
In the book, A New Earth, Eckart Tolle describes acceptance as ‘not minding what happens.’ This is what he says.
“When I don’t mind what happens, what does that imply? It implies that internally I am in alignment with what happens. “What happens,” of course, refers to the suchness of this moment, which always already is as it is. It refers to content, the form that this moment—the only moment there ever it—takes. (in our case, the form that this moment takes is that our child has autism or epilepsy) To be in alignment with what is, means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally as good or bad, (Like having epilepsy isn’t good or bad)but to let it be. Does this mean you can no longer take action to bring about change in your life? On the contrary. When the basis for your actions is inner alignment with the present moment, (or acceptance of your child’s condition) your actions become empowered by the intelligence of Life itself.”
Now, what the F does that mean? It means that if you come to a place of acceptance. If you accept that your child has a seizure disorder if you accept that your child is going to be different than you thought, if you accept that you are going to have to learn a whole new set of skills, then whatever actions you take, will be fueled with the power of acceptance. Your actions and outcomes will have a certain power to them.
So let’s talk about the opposite of acceptance. Eckart describes resistance like this.
“Resistance is an inner contraction. You are closed. Whatever action you take in a state of inner resistance (which we could also call negativity, resentment, anger, denial, bargaining) will create more outer resistance, and the universe will not be on your side; life will not be helpful. If the shutters are closed, the sunlight cannot come in. When you yield internally, when you surrender, a new dimension of consciousness opens up. If action is possible or necessary, your action will be in alignment with the whole and supported by creative intelligence, the unconditioned consciousness which in a state of inner openness you become one with. Circumstances and people then become helpful, cooperative. Coincidences happen. If no action is possible, you rest in the peace and inner stillness that comes with surrender. You rest in God.”
Ok, so what the F does that mean? It means that if you have a war going on in your soul about the fact that your child isn’t the way you always dreamed, or you’re bitter because you’re in the hospital again instead of Sally’s birthday party with the “normal” families, you are in a state of resistance.
When you’re in a state of resistance, you CAN’T allow anything really helpful or good to come in because the shutters are closed, the light cant come in. In other words, nothing goes right. Nothing is on your side. You can’t get anyone to cooperate and be helpful when that’s really what you and your child need.
What Life Looks Like In A State Of Acceptance
People always tell me that we are blessed to have the support team around Remy that we have. I believe it’s because we have an inner alignment and acceptance to Remy having pcdh19. What do I mean by this? The world is on our side. The universe is on our side.
Our aba therapy company is made up of a group of people who genuinely care about people with autism. There are a lot of companies that are our for profit but not Remys. It’s their life’s work to learn and teach with love and to create a learning environment that is fun and supports her growth, this is why Remy LOVES her aba therapy.
Remy’s neurologist is one of the best in the world who has a lot of patients with PCDH19 and makes it his life’s mission to love kids with epilepsy and do whatever it takes for their quality of life.
Remys school teacher as well as the aids in the classroom, are so in tune with autism, epilepsy and acceptance and has a belief in Remy so much so, that Remy has no choice but to thrive and be her very best because her teacher treats her like an equal and not a poor sick autistic child.
Remy’s babysitters and 1:1 school nurse, love her so much that they would put their life on the line to make sure Remy is taken care of with the best care that a child could have.
Remy’s family lifts her up and adores her and observes her to understand her better. They research and learn and treat Remy with so much admiration, there’s no way that Remy feels like she is a sick person or any different than anyone else.
Remy’s community, You guys, give so much support and love that Remy has nothing but blessings over her life.
Remy and our family are connected to incredible families with PCDH19 that are going through the same things and are always offering their support, guidance, and advice 24 hours a day.
Because of this, I don’t worry about her future. I don’t know what it’s going to look like, but it’s going to be ok. Because the universe is on Remy’s side.
I don’t say all of this to brag or to say that all of these things just fell into our lap. We worked hard to surround Remy with the best of everything. But because we are so accepting, these things came to use much easier.
My AHA Moment
So how did I get to this point? How did we get here? What led me into this acceptance I speak of.
A couple of years ago was the worst time in my life. Remy received an autism diagnosis, she wasn’t able to talk, her behavior was so bad we didn’t even want to take her anywhere, and she was having seizure clusters on a weekly basis. I was tired, sad, angry, depressed and hopeless.
Anytime we had an opportunity to take a break and get a baby sitter to help us just unwind for a few hours, Remy would have another seizure and we would be back in bed for days at a time.
I thought that planning a great vacation would give our family the much-needed rest and relaxation we needed and it would put a little joy in my life since everything around me was so grim.
So that we did. We went on a gorgeous trip to Oregon in a beautiful house on the prettiest lake I had ever seen. I thought I would be able to leave all my worries and sadness behind and just had a good time with the family.
But it didn’t turn out that way at all. I realized I was depressed, and even though I had on the outside created a perfect scenario for joy, I was so miserable on the inside, I couldn’t even enjoy it. I just wanted to be alone. I realized that if I couldn’t be happy on a beautiful vacation, then there was nowhere I could GO that would bring me peace.
It was then that I decided to seek a way out of my depression. I knew that Remy’s condition wasn’t going away, so I had to find a way to be at peace even WITH pcdh19. I had to find a way to accept it.
What you seek, You shall find.
I came across the book “A new earth” the one I have been talking about. I learned from that book that our purpose in life is to bring consciousness into this world with the gifts and talents that EVERYONE is endowed with.
This confused me. I couldn’t understand how God, could let Remy have epilepsy. How He could think that autism was going to be beneficial in her life and how was she supposed to fulfill her purpose, with these issues. How could I find my purpose and be happy when our life consists of rescue medications and the hospital on speed dial. How could we live a normal life when Remy can’t even communicate, and her behavior is out of control. This didn’t make any sense to me.
Then I read in the book.
“Life will give you whatever experience is most helpful for the evolution of your consciousness. How do you know this is the experience you need? Because this is the experience, you are having right now.”
So you’re telling me that Remy having these horrific seizures and autism that obviously is impairing her quality of life is the experience that I need? That SHE needs?
The answer is Yes, it is. How do I know? Because horrific seizures and autism are what is happening right now.
This sentence is what got me to switch gears. So if this is the experience I need to have for the evolution of my consciousness, then how do I get over the fact that our lives, my life, Remy’s life have been turned upside down.
This was when it came to me. Not in the form of words or voices but in a realization, an aha moment, an epiphany.
The Power Of Surrender
I have to LET. THIS. GO
I have to let go of my victim story. I need to let go of my own ideas of what Remy’s life SHOULD look like. I had to let go of my anger and jealousy and resentment towards epilepsy, autism, and God. I had to let go of trying to control how this plays out. I had to let go of regret and shame and being offended by everything. I had to let go of being right and needing all the answers, I had to let go of the idea of the child I thought I was going to have, the child i “should” have had. I had to let go of what society version is of a worthy life. I had to let go of all my beliefs and understanding that ability equals purpose. I had to accept that even though I wouldn’t choose a life for my child that includes seizure drugs or being non-verbal and having to carry oxygen tanks around with us. I needed to accept that it is what it is.
nothing more nothing less.
It IS WHAT IT IS
This phrase was ingrained in my soul.
I remember laying in bed when this realization came over me. All the anxiety and angst that I had for the past 3 years just disappeared. The world made sense, Remy’s disorder all the sudden wasn’t the worst thing that could ever happen. It was, for the first time, THE doorway into Remy’s purpose in this world. The door into my purpose in this world. It is IN her condition that consciousness can come through into this world.
How can you HATE the vehicle in which consciousness comes through?
This was the day that changing my perspective became the focus of my attention.
I knew that Remy wasn’t going to wake up “cured” so it then became a practice for me to look at her condition as a way to learn about life. A way to understand that what we know about autism, what we know about epilepsy barely scratches the surface and there is beauty in it, there is purpose in it.
Does that mean I don’t want a cure for her? No, sure, let’s give her a cure. But am I waiting on that to have peace?
I know that might sound a little woo woo, and maybe it is. But whatever. I went from being in total despair to finally understanding that all of this is bigger than my little view of what I think is fair or not.
The Possibilities When You Can Embrace Differences
I love Little People Big World. I have been watching this show since it started. For anyone who doesn’t know this show, it’s a reality show that follows a family in Oregon who are little people or dwarfs. Both of the parents are little people, and one of their children are too.
One of the things that have always impressed me is that Matt (the dad) had spent most of his childhood in a hospital. The type of dwarfism that he has, required him to have surgery after surgery. Because of all the operations and his kind of dwarfism, he is pretty crippled as a man. He can’t walk without canes and crutches, he mostly uses wheelchairs and scooters to get around. His hands and fingers turn inward, and he doesn’t have the skill that most of us have.
There are so many people that would be bitter to live a life with so many limits like Matt.
Most people would say things like “I can’t work, I am disabled, What contribution could I have, I am little, I am in so much pain, etc.
But with Matt, He struggles physically with all of these things. But what he doesn’t struggle with, is his creativity and entrepreneurial spirit. He built this farm and empire around the farm. He and his family used their differences and built a very successful reality show documenting their life as little people. He’s spoken all around the world, invented a stool to have in hotels for little people guests and anything he struggled with, he got help for it. He can’t use his body to do physical work, so he relies on other people to help and the support of tractors and big machinery.
But he never let his physical abilities stand in the way of his dreams.
That makes me think of Remy. She has so much going on medically. She has seizures, sensory issues, she can’t verbally communicate (although she is undoubtedly making HUGE improvements which are SOOO exciting) she has these debilitating seizures almost on a weekly basis, and yet, she is fearless. Maybe she can overcome odds and offer the world something that no one sees coming.
A couple of nights ago, we went to this trampoline place for the girls to get their wiggles out. At sky high, they added a couple obstacle course type structures. One of them are these poles that are steps. With a carabiner attached to your harness, you walk up these stairs and end up about 2 stories high with no railing. I saw this, and my heart sank. I thought to myself that I don’t believe I would ever be brave enough to climb this. But with Remy, we put on the harness and watched her just climb these stairs of death with zero hesitation or fear. What? If that isn’t a gift, I don’t know what is.
So if your child is sick or has all these things going against them. Who are you to think that they cant defeat the odds? Who are any of us to limit what they can do or what they one day will be able to do.
The Person Who Changed My Life
Now to switch gears a little bit, I want to share a story of someone who helped change my perspective on raising Remy. This person has shifted my focus so much that I am forever grateful for the impact she has had on my life. She is the reason for this podcast.
So a few years ago, I met a woman named Dawn. She had joined the private Facebook group of families affected by PCDH19 just like Remy. But her daughter Madeleine was a teenager. So they had gone through years more experience by that time.
I was interested in Madeline’s journey because I was at the point where I wanted to talk with people on the other side of toddlerhood to get an idea of what life could or might be like with Remy as she got older.
So I chatted with Dawn and asked her tons of questions. I wanted to hear their journey. It turned out that Madeleine was in and out of the hospital all of her life. She had the same type of seizures that Remy had and suffered some developmental delays too. They had traveled the country trying to find the right doctors and therapies and answers. Madeleine had been through some of the most horrific events in her life, and yet, when I saw her pictures on Facebook, she looked happy and light. You could see this light that shined through her and this elegance to her that shouldn’t be there.
I learned that their family traveled the world and had been to many countries and have seen so many amazing things. All over Europe and Egypt and other exotic places. Madeleine had friends and was a dancer and participated in the Special Olympics.
I asked Dawn how they did it. How could they live such an incredible life while at the same time dealing with all the stuff that Madeline had to go through?
Dawn told me about this tradition they had called Champagne Thursdays. That their family would make a toast every Thursday with either champagne for the adults and sparkling juice for the kids. That no matter what was going on, that they would each say something they were thankful for. Sometimes it was only an “I am thankful to make it to Thursday” other times it was being thankful for a good grade, or safe travels, or special award.
Dawn and Madeline and their family found the secret. To appreciate whatever they had no matter what.
I was shocked when I opened facebook one day and learned that a seizure had taken Madeline’s life one day. No one saw it coming. She has had so many seizures before this that no one could believe that this could happen.
This pierced my soul. This news is something I will NEVER forget.
I was shocked. How could this happen? How could this beautiful girl full of life be gone like that?
This is the fear that I had most been afraid of with Remy. What if a seizure takes her life? I mean, it’s very possible. Now I KNEW it was possible and real.
What Madeleines life did to me though didn’t make me more fearful of something terrible happening to Remy. It did the complete opposite.
It made me realize that NO ONE knows how long we have. I mean we are ALL temporary, right? So if a seizure could take someone’s life, if we could go at any time, do we really have time to live in resistance? Or is the point of life to take, whatever happens, accept it and live the fullest life we can live.
I now know its the latter.
The Impact A Medically Fragile Person Has
What Madeleines life has done to mine, is to steer my mission and goal in the direction of thankfulness and gratitude. Her experience made me realized that no matter what happens TO a person, that thing, the thing we think is the worst fate that can fall upon someone can be the vehicle in which consciousness enters this world.
For Madeleine, she fulfilled her purpose in this life. She brought light into this world that will glow forever. She touched the hearts of so many and was an example of having joy no matter what the circumstances.
I now don’t fear a seizure taking Remy’s life. Instead, I fear not giving her the best experience I can give her. That’s my mission.
The Danger Of Resistance
So let’s talk about what happens then if you don’t accept your child’s condition/diagnosis?
Well, this is the part that isn’t going to sound pretty. It’s because it isn’t.
I will start by sharing an observation.
In my 20s, we lived on a very busy street. It was a street that got traffic, busses would use this street, it was one of the main ones in San Jose. There was a couple of bus stops semi near our house, and so I would notice the same people frequently walking to the bus stop.
Every day for about 5 years, I saw a man walking to and from the bus stop twice a day. I have no idea where he was going, but it was the same time every day. He would walk down the street and always had a stern look on his face. He seemed bitter, angry, pissed off. It was so much so that I waited for the day that I would catch him on a good day to see a smile or even pleasant look on his face. He seemed so in his head that he never noticed me noticing him.
Now behind him, about half a block or sometimes block away, never closer than that was a man in his late 30s maybe, who had down syndrome. It was this man’s son. They never ever ever walked together. The father always made sure to be yards and yards ahead of him. Every day, I saw this, and it made me sad.
That is a man who never accepted his son’s diagnosis. That is a man who was so burdened by his son, that he became bitter and angry. He never noticed anyone around him but made sure he always kept a considerable distance from the grown son who he must have been responsible for caring for.
If you don’t accept your child’s diagnosis, you will be that father. Maybe not in such a dramatic way, but you will be that way internally, and your child will feel it. Its impossible for them not to.
If you don’t accept your children fully with or without an incurable seizure disorder or having autism, even the kind that is non-verbal, self-harm kind, your child will grow up and always feel like they are broken and that there is something wrong with them. They will never flourish into the person that they were born to be, and it will be your fault.
How Acceptance Can Teach You What Life Is Really About
When you can accept and embrace your child fully you realize that it’s not about you. Your child’s purpose isn’t to fulfill YOUR childhood fantasy of motherhood. Your child’s purpose isn’t to make you look good to your facebook wall or the neighborhood picnic. Your child’s purpose isn’t to be all the things that you fell short on when you were a child. Your child’s purpose isn’t to be a little mini version of you.
Your child’s purpose is their own. They have their unique individual expression for this world, and the sooner you can get on board with that the sooner you can have peace.
Being a special needs parent is hard. There’s no denying that. Being someone who HAS special needs is way harder. The one thing I know to be true though is this life is hard because you are meant to be better than you ever have been. If this was easy, you wouldn’t grow. Growth is a requirement and for that, you are blessed.
Thank you for sticking around. I can’t tell you what it means that you are still here.
I would love to hear your thoughts and experience on this subject. email me or DM me on social. I can’t wait to chat.
With so much love