Today is 5p-/Cri du Chat Awareness Day. As you know if you’ve been reading this blog for longer than five minutes, my daughter, Olivia, has this rare syndrome. She is missing part of her fifth chromosome and it affects everything about her. It also makes her my Olivia.
It’s so strange to be 19 years into this special needs parenting thing. When she was first born, Matt and I were devastated and completely overwhelmed. Now? We *almost* forget that our lives are different than other people’s because to us this is just normal. I like connecting with parents of young kids with Cri du Chat and to hopefully, have them see that it will not only be okay, it will be amazing.
Most days, we’re just a regular family with three teenagers that eat non-stop and want to be left alone. Yes, Olivia needs help with everything including diapering, eating, self-care, etc., but she’s also a very typical teenager in that she just wants to be alone in her room with her iPad and movies.
But you know what’s not typical?
When I go to wake her up in the morning and her face lights up. I always sing to her or say “Good Morning, Sweet girl” (her favorite) or dance or do something silly. She’s always happy to see me. Always.
When I pick her up after school, she’s beside herself with happiness to see me. She flaps and yells and says “It’s my Mom!!” and jumps up and down. Every day. Even though she just saw me that morning. It’s like that every single day. And it’s wonderful.
She loves her family more than anything in the world. She doesn’t have best friends or people she hangs out with. We are it. And she is 110% okay with that. It’s perfect for her. We are her best friends.
She is content to just be. She’s not ever thinking the grass is greener, that she wishes she had a nicer car, cooler clothes or a new iPhone. She’s always content. Olivia lives in the moment and is happy.
She doesn’t have a mean bone in her body. Does she get upset at times and act out? Of course she does! But is she ever mean on purpose? Never. Do you know anyone who is kind 100% of the time? I do!
For today, I don’t just want to spread awareness. Yes, it’s a rare syndrome that I wish more people knew about and understood. But what I would really love? I wish for people to see Olivia, and others just like her, as a shining example of a human. Instead of thinking they’re “weird” or “not normal” or someone to be afraid of or uncomfortable around, just see her as…Olivia. The happiest, most selfless, kind, self-assured person I’ve ever met. The best friend I always wished for. The perfect daughter. The epitome of joy on earth. That’s what I wish everyone was aware of — just how special those with special needs really are.