Today was Zoey’s first day, ever, of Vacation Bible School. At 7 years old, she is supposed to be entering 2nd grade. I thought it would help her fit in more to be with kids who are of similar height, and asked for her to be in the kindergarten class. I saw today that maybe that wasn’t the best idea. The sweet kindergarten kids in our crew asked several times, “What’s wrong with Zoey?” At first I said, “Nothing, she’s very healthy.” However, these kids couldn’t be fooled and the asking continued! Hahaha! Zoey wasn’t amused though and her anxiety levels were on the rise. She was fussing constantly and chewing her chewy necklace extra hard.
Today’s VBS theme was, “When life is unfair, God is good!” The kids were to learn that despite times that they experience unfair circumstances, God is good. Some of the unfair circumstance that were given were superficial such as, “So-in-so lives next to Universal Studios and gets to go every day. My friend just got a brand new I-phone and mine is two years old.” It hit me today that Zoey’s life, however, is truly UNFAIR.
Zoey has 2q23.1 microdeletion syndrome (due to a macrodeletion of 7.29 MB of DNA on chromosome 2) , White-Sutton Syndrome, Cerebral Palsy, Autism, Dysphagia, Sleep Apnea, Non Classical Congenital Adrenal Hyperplasia, insomnia, gastroesophageal reflux disease, chronic constipation, impaired speech, fine motor delay, gross motor delay, a g-tube, orthotics, glasses, and c-pap machine. Life is unfair for her!
About 1.5 hours into VBS, after the umpteenth attempt at finding out “What in the world is wrong with Zoey”, I asked Zoey if I could share a few things that are different about her. She signed, “Yes.”
Our kindergarten friends weren’t ready for the laundry list above, but I told them basically that Zoey has Autism and it makes it a bit harder for her to have fun. She is scared by loud noises, too many people, and changes in routine. VBS is a nightmare for Zoey! Instead, I pointed out and explained the physical things that our new friends were definitely aware of because they could see it.
- It’s UNFAIR for Zoey that she can’t drink water like you. The water you drink goes into your belly. When Zoey drinks water with her mouth it goes into her lungs and makes it so she can’t breath. God is good, though, because he inspired doctors to create a g-tube that is like having a straw that can go straight into her belly.
- It’s UNFAIR that Zoey can’t talk the way you can, but God is good! Zoey can use sign language to communicate and soon will have a computer that will talk for her when she pushes buttons.
- It’s UNFAIR, that Zoey can’t run, jump, and spin during games, like you. But God is good for inspiring people to create super shoes that can help Zoey learn to move better. Someday she wants to play soccer.
Zoey seemed to cheer up after this exchange of information. She enjoyed playing with kinetic sand during Bible story time, and laughed hysterically at Simon Says during game time. She was the only kid laughing! She had me giggling because her laugh is so very contagious! A few friends nearby smiled at her laugh and I bet tomorrow she will have them all giggling.
She was even quite happy at the beginning of the closing ceremonies after we pretended to be water buffalo with big stompy feet on the way to our seats in the auditorium. She was super excited to see her older brother being a free spirit, as usual, and wandering in the front of the church. She giggled with glee as he hugged her, and Zoey didn’t even try to smack him!
During the closing ceremony the leader asked, “Have any of you ever felt that life was unfair or experienced something unfair?” Zoey signed, “Me!” That shocked me! My sweet girl is starting to realize that her life is so very much UNFAIR. When kids talk to her and she can’t communicate back because they don’t know her language, she feels the UNFAIR. When she can’t hold hands with a friend without me helping to hold their hands together (she loses grip), she feels the UNFAIR. When she can’t roll the pretty paper around a straw to make a bead, she feels the UNFAIR. She is realizing how very different she is and how UNFAIR it is. My hope is that I can continue to encourage her and remind her that God is good, and point out the good side of each unfair thing that has happened to her.
By the end of the singing, Zoey was starting to meltdown. She lay on the floor screaming and I laid down next to her because it often helps. I whispered in her ear, “I love you even when you’re upset. I love you even when you’re screaming.”
She sat back up and I held her in my arms. I wish I had added, “God loves you when you are screaming,” but I’m sure I’ll have a chance tomorrow!
I had just calmed her down when everyone responded to a question that I wasn’t able to hear because Zoey was crying. The response was a huge shout. She covered her ears in agony and started to shriek again. She cried for the next five minutes until she saw her big sister who gave her a koala bear ride. Gotta love big sisters for saving the day! At least almost…
Once we got in the car the meltdown escalated to a shrieking rage for thirty minutes! I was really upset by this because I almost felt like VBS was a form of torture for her, and I was thinking I wouldn’t take Zoey back to VBS tomorrow. However, one of my Ausome mom friends helped me realize that she had been holding back the WHOLE time! She was venting all her frustrations in the car on the people she knows can handle it. She had TRIED to keep her autistic like behaviors under control for over three hours! I love this girl for that! I’m so glad she had the chance to vent to her family how very unfair her life is.
So will I take Zoey back to VBS tomorrow? I believe I will because despite all the UNFAIR circumstances Zoey encounters tomorrow, she will grow and learn from this experience. By the end of the week, she will know that when Life is Unfair, God is Good!