It was the first time we had to explain true loss to Mateo. Our very close friends lost their daughter on December 4th to an extreme allergic reaction, and still don’t know exactly the cause. I know many of you have children with allergies, so many children on the Autism Spectrum do, so I think it is even more important for me to share Paige’s story here. Paige was eleven and played much more with Mateo’s sister Maya than she did with Mateo, but our families shared many wonderful memories together.
You see Paige was a very unique and incredibly talented girl. She believed in always expressing herself in everything she did, a natural artist. She drew incredible pictures from a young age. I remember her sitting at my table sketching out incredible anime drawings at the age of 6, and I was blown away. She also embraced everyone as a unique individual and showed Mateo nothing but kindess as not just a friend to his older sister, but his friend too.
She raised money for the Walk for Autism for Mateo and participated in it for several years. She never treated him any differently and always was accepting of him. The loss her family feels cannot be matched, but we are truly are thankful for the many wonderful memories we shared with Paige. She brought light, art, laughter and a wild and electric energy into our home that will never be forgotten.
So when we had to explain this loss to Mateo we were not sure how he would react or if he would understand. We explained that she had died, and Mateo asked, “What happens when you die?” We explained to him that she would go to Heaven and that she would be our Angel and watching over us all. He said, “Oh, Heaven, ok.”
Reuben and I looked at each other, so unsure if he truly understood. But we continued to talk about Paige and tell stories and relive our happy memories together. And on Saturday we attended a beautiful Memorial for her. The night before we explained that we were going to this Memorial to say good-bye to Paige. That she wouldn’t really be there, but since we didn’t get to say good-bye before, this was our chance. He said, “Because she’s gone right? She died?”
With Maya we can just use the words, passed on and heaven, but with Mateo everything is very literal. He needs the specifics, which is not easy for everyone else. So we attended the Memorial as a family and Mateo eyes welled with tears several times. The Pastor talked more of heaven and how we would again see Paige, and how she lives on in every one of our hearts and in each memory that we share. Reuben got up to tell the memories of our family and Mateo watched intently. He got to release a balloon for his fairwell to Paige. And again we talked to him the next day, Reuben asked him, “What’s something good to do when you miss someone you can’t be with?” and Mateo said, “Remember them, Remember Paige!”
Although our children with Autism may show their emotions differently, they are processing everything around them. They feel our sadness and may not sugar coat their words, but they can and do understand what loss is. The sadness is always quiet with Mateo, but I can see it, and I always try to talk to him about his feelings and emotions.
In Paige’s memory we would love to spread more awareness about the severity of allergies. Her mom and dad did everything right, they would never come to our home without their own stash of food, several inhalers, her nebulizer and lots of Benadryl. She had many allergies, I always said she should be our Bubble Girl! But you couldn’t hold someone so full of life away from playing with the dogs and kitties that made her break out in hives, or not go Trick or Treating just because she couldn’t eat or even touch the majority of her candy, from Camping when everything would make her itch and cause her asthma to flair up or from living each day to it’s fullest. That is how I will remember Paige and how I choose to honor her. Embracing each day and hugging my kids harder, treasuring each moment we share and by sharing her story with the world.
Please read more about Paige’s story here: http://www.gofundme.com/i2s0ls?fb_action_ids=10205554805259525&fb_action_types=og.shares&fb_ref=