A few weeks ago I attended the Freshman parent night for my eldest. He will be attending high school next year, and it was our opportunity to check out the school.
Thirteen years have gone by in a flash. It's been hard not to stop and stare at him just a little bit longer lately and think about how quickly he has grown up right before my eyes. My thoughts venture from t-ball games, piano lessons, soccer tournaments, Disney World, and so much more. It makes me teary, even though I am so excited about him moving on to the next stage of his life. As the mom of a child who has had a completely different experience than him, I, perhaps more so than many moms, do not take one ounce of his blessed abilities for granted. He's happy, kind, respectful, compassionate, smart, talented and has lots of really nice friends. The future will be whatever he wants it to be. It doesn't get any better than that.
My youngest is growing up just as quickly, if not more so. Seven going on seventeen, she has been like a tween-ager for the past three years. I don't know if that's how it is for all youngest children, but I just can't keep her from seeming much older than she actually is. She too is a blessed child, well-liked, brilliant, beautiful, athletic, and a real fireball. Passion and compassion run deep in her DNA. I don't take an ounce of her abilities for granted either.
It's painful to admit, but when I look at my middle child, who was not as lucky as her siblings, I don't have the same nostalgia for her youth as I do my others, or the same excitement for her future. The truth is, as I reflect on the last ten years of her life, my memories are overwhelmingly filled with anxiety, guilt, and pain. And as I look forward to the next ten, I am instantly shackled with sadness, fear, and worry. How horrible.
Strange then when I look through the photo albums of our family I see her adorable face beaming back at me. From them, no one could ever tell anything was ever wrong. She's smiling, happy, beautiful, and full of light. She's in Disney World, playing t-ball, swimming, making silly faces, ripping open birthday presents, and wrestling with her dad, exactly like her brother and sister. And yet, she was not like her brother and sister.
How I wish my memories of her over the past decade were filled with us reading books together, going to the park, and taking gymnastics classes. Because we did all of those things. But it's almost like I can't remember them. For when I think of these past ten years, as we only had the first five months of her life without a health problem, my most prominent memories are completely and totally different.
Supplements, doctor appointments, blood draws, poop collections, urine collections, x-rays, therapists, therapies, IEPs, gluten/casein free foods, seizures, special diets, enzymes, ambulance rides, emergency rooms, insurance bills. Conferences. Getting up in the middle of the night. Hours and hours on the computer researching, networking, reading, and advocating. Crying. Praying. Depression. Exhaustion. Anger. Fear. Fear. Fear.
Do not misunderstand me. They were all worth it in the long run. But those are truly my biggest memories of her childhood. And much of that is my own fault.
But for the insistence of my mother, thankfully now, I have others. It was she who finally said something in 2008.
"Alright. That's it!" She laid into me one day.
"You have to see her, not just the illness! Not just what she can't do anymore, but what she can! She can feel that, Julie. She can feel your sadness and disappointment and worry and guilt. We all can! You have to see her and be with her without all of that. Please! Stop it! Sit with her! Play with her! Really play with her, and not for therapy either! Enjoy her! I know this is hard. I know she isn't the little girl in the way you envisioned. I know this isn't fair, and it isn't what you wanted for her. But guess what? She's still your little Evie. She's in there! And this is how it is right now, like it or not. She needs to know she doesn't make her mommy sad and anxious all the time. She needs you to be happy around her! Just like you are with the others. And this time will go so fast, Julie. You know that. You must choose to make other memories!"
I was so angry when she said it. How dare she tell me I wasn't enjoying my child! And how dare she suggest there was anything to enjoy! You don't stop to have a tea party when the house is on fire, mom! Don't tell me I have to enjoy the fact she has brain damage that could have been avoided! Ooo, I let her have it. How could she be so insensitive? Like I needed this now? We got in a big fight.
And yet, deep down inside I knew she was right. I just didn't want to hear it. For on top of feeling the tremendous and unbearable guilt of getting my daughter into this situation in the first place, I was now screwing up the way in which I was trying to get her out. There were moments, and are moments, I just can't breathe.
Not long after the lecture, two tickets to the American Girl Doll store showed up on my kitchen counter. Mom had purchased an evening of Mother-Daughter bonding in Chicago. We had private shopping, private dining, and all sorts of fun activities arranged for us. Eve had received a doll for Christmas the year before. It was still in its box put away in the closet. She didn't know how to play with it...or so I thought.
I was apprehensive about going. Although I wanted to spend the time together, I was worried about being surrounded by a bunch of typical, chatty little girls all night. Could I handle being faced with a whole store full of little girls? It was selfish, I know, but it's the truth. When the cup of what you can tolerate emotionally is already at the rim, you don't go places and do things you know might make it overflow. It's a careful and calculated walk through life, just like when you really do have a very full cup in your hands.
We kept the date anyway. It was a beautiful day on the Magnificent Mile. The flowers were blooming and the sun was shining. Alone, out to have fun with her mom all by herself, something magical happened. She came alive. She held her doll close and showed me all of the clothes she would like to get, mostly by pointing and smiling. We took a picture together and had a delicious dinner in the private dining room. She fed her doll pretend food. She answered the questions from the conversation box. What's your favorite animal and why? Dogs. They love you.
These were things I had never seen her do before. Say before. I was stunned. Had she been able to do this the whole time? Were we too busy working on reading skills, physical therapy, and micromanaging her diet to notice? Was I so focused on her being completely and totally recovered that I was failing to rejoice in what already had? I was overjoyed and horrified simultaneously. We got the doll's hair done and walked around the city the rest of the evening holding hands. If there is a heaven, I can't imagine it any sweeter than that.
As I drove home that night, I was overwhelmed with gratitude. Even if I never got it back, the connection we shared that day...even if it was only for that one day and never again...I had that. The most meaningful, most memorable, and happiest time I had and have ever spent with her. I called my mom in tears. Happy ones.
As I continue on this journey of Autism advocacy and recovery, I have made some incredible friends along the way; some in real life, some I'll only know in the virtual world. Many of those virtual friends are parents of young children. I'm sad I wasn't able to prevent their children from joining mine. It's inspiring and depressing to watch the next generation of Autism parents coming up the ranks. They are a tough brood.
I sometimes wonder if this is how the first generation looked at me. Passionate. Angry. Ready to kick some ass. Completely driven and focused. Loud. Yelling from the keyboard. I love them, and I pray for them. For I see myself seven years ago in them. And I worry for them.
To them, and to anyone else who needs to be reminded, let me give you the painful, yet life changing advice my mother gave me.
Your children are in there. They see you. They feel you. And they need you, especially you, to see and feel them. Be responsible for the energy you bring to them. Make sure they know you feel more for them than just the pain and anxiety you feel deep in your heart. Make new memories. Good ones. Ones that have absolutely nothing to do with Autism. Treat them like a child as much as possible, not just a medical case. It's easy for them to get lost yet again in all of this. Don't let that happen.
Whether your child ever recovers from Autism or not...and I pray with all my might for you that they do...they will only be this little once. They are children. Stop. Sit with them. Play with them. Enjoy them as they are, as hard as that may be for some of you. You must choose to make new memories.
There's so much more to our children than the Autism. And that's at least one thing I agree we need to celebrate.
Julie Obradovic is a Contributing Editor to Age of Autism.