When I say the word acceptance, there’s a part of you that wishes and wishes you could accept your child’s diagnosis, but another part of you feels like “hell no, I will NEVER accept this.”
Now the reason why I am talking about this is because my entire perspective and view shifted when I got to the point of acceptance with Remy, 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? 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 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 deep down, my happiness, my stress level, my ability to enjoy life, to enjoy being a mom, my fear and anxiety, was a complete mess.
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 heads 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. I realized that me NOT accepting autism and epilepsy was only going to make everything worse.
The Power Of Surrender
I came across a book called “A New Earth” by Eckhart Tolle. 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.
I needed 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 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.
The Possibilities When You Can Embrace Differences
Remy 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 the odds and offer the world something that no one sees coming.
So if your child is sick or has all these things going against them, who are you to think that they can’t 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
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. Her daughter Madeleine was experiencing this, but she was a teenager. So they had gone through years more experience by that time.
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 shone through her and this elegance to her that shouldn’t be there. Every week Madeleine and her family would make a toast and everyone would each say something they were thankful for, regardless of what was going on. 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 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?
The Danger Of Resistance
So let’s talk about what happens then if you don’t accept your child’s condition/diagnosis.
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.
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 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.
- If you feel like you have to fight against autism or epilepsy, it is only going to hurt your child and everyone else around them. Not accepting autism or epilepsy is only going to make things worse, not better.
- Your child’s purpose is not to fulfill your fantasy of motherhood or the perfect childhood for them. They were given their own purpose to fulfill and their own way of expressing themselves to the world.
- If you do not accept your child, they will grow up and always feel like there is something wrong with them. They will never be able to become the amazing person that they were created to be if you do not instill that belief into them by wholeheartedly accepting and believing that yourself.
- No one knows how long any one of us have to live. Life is temporary. So, we do not have the time to live in resistance. We have to take whatever happens, accept it, and try to live the fullest life we can.
- Remy has gone through so much and yet she is so fearless. Who are we to limit what our children can do? We should be embracing their differences and encouraging them to believe that they are capable of incredible things because they are!