In a few weeks, we will celebrate a birthday. I still remember the phone call. She had arrived. Something was very wrong.
In the weeks and months that followed, I scoured the Internet for some hope — something to tell me that it wasn’t as bad as they said it was. I found little solace and a whole lot of pain for her future — physical pain for her and emotional pain for everyone who was trying to come to grips with the prognosis. My best friend’s daughter C was born with a rare genetic disorder known as Epidermolysis Bullosa — specifically, a type known as Recessive Dystrophic. RDEB. Her skin was like paper. Like butterfly wings.
Two years later, my youngest was born. Physically, he was perfect, save for the broken collar bone he sustained during delivery. His disorder was silent. Invisible. Of course, after the diagnosis, I looked back and it all made sense. All the “quirks” — my little Max had Asperger’s Syndrome.
My heart broke. The more I learned, the more I worried about what life was going to hold for him. They told me he couldn’t connect, that he would have a very hard time forming relationships.
For many years now, we have embraced living here in Aspie-Land. We focus on the strengths, and I couldn’t imagine Max being any other way than he is. However, I have often had this little nagging tug at my heart. “Will he one day be able to love? To have a family, if he wants to? Will there be anyone else who understands him?”
Funny how the universe sometimes answers your questions in the most amazing and unexpected ways.
Three months ago, we went through some major life changes. I separated from my husband and we moved back to my hometown. In fact, we moved in with my best friend.
As anyone who’s got experience with the spectrum knows, change can be one of the biggest challenges we face. I fully expected Max and me to be completely insane by the time all was said and done.
Then something happened. The first month, I noticed that Max wasn’t melting down. In fact, he was holding it together better than anyone else. He had been hanging out with C.
In the last couple of years, her health had declined to a point that she was often bed-bound. She slept a lot. She was angry at how much she was sleeping. She was in a lot of pain.
In a conversation one night, we were talking about how she had vocalized her fears that she was going to die without knowing love in the “romantic” sense. She told me one time that she had asked a boy out on a date and had been rejected. It hurt so bad that she never wanted to do that again. This beautiful young lady feared that she would never have a boyfriend. I remarked that maybe Max should take her out on a date. It was really just a passing thought, but as I pondered it, I realized that it was actually not a bad idea.
They seemed to be perfect for each other’s emotional and physical health. Max is very gentle and is content to sit still for hours by her bed while folding Origami or watching funny videos. C is supportive of his artwork and doesn’t mind him going on for hours about science or video games.
I proposed the idea to Max about asking C out on a date. He was all about it. I just assumed it would be a nice little date between friends and would give C some happiness.
I had no idea what was about to blossom.
It has been two months or so since Max asked her out on a date. In that time, I have watched in awe as my little Max makes her meals, helps her put on gowns or her Forever Lazy over the bandages, checks in on her often to see if she needs anything, and sometimes sits by her bed as she falls asleep. He asks for nothing in return but her company and smile.
Meanwhile, C is in a better place than we’ve seen her in a very long time. She takes less pain medication, sleeps less, and feels compelled to get up and do things. She has a reason to keep fighting and there is a lot of laughter and joy. She told me that she has never been so happy in her whole life.
On Valentine’s Day, Max got down on his knee in the middle of IHOP and proposed to her. We plan to have a small ceremony for them in the backyard.
Now, I look at my son and see a glimpse of the man he will one day become. A caring husband, perhaps a father. I know now that he is capable of more pure love than many of the NT folks I know. He is assuring that his best friend’s dreams will come true. He is prolonging her life and making sure that it is filled with love and tenderness.
What was that about Aspies never connecting? I think he’s pretty darn connected. In fact, Max is my hero.
About the Author: Holly is a mother of three — one girl and two boys — ages 16, 15 and 13. She is an Aspie who also has ADHD and PTSD. She was diagnosed late in life and is a veteran Army Medic. Currently, she is back in school, pursuing her Psychology degree. The Caterpillar and the Butterfly: A Love Story was written expressly for Autism and Empathy.