Sometimes, even though you’re a glass half-full person, everything catches up with you and you have a moment where you feel like you can’t breathe and your heart is broken.
You are sitting in your daughter’s last IEP meeting of elementary school with her beloved team of teachers and therapists. You’re already biting the inside of your lip and focusing on the document in front of you because you are bound and determined you’re not going to break down into a sobbing mess. Finally, you are into the meat of the goals. The goals are fantastic. They’re perfect for your daughter. Much time and effort have gone into thinking about what she needs and what will help her grow. You are sitting there thinking how lucky she is, and you are, that these people know her so well and can make plans to help her succeed. She will be focusing on continued improvement in communication, fitting in with her peers and life skills. It’s exactly what she needs.
That is exactly when you have that moment. The moment when you feel like you can’t breathe and your heart is broken. It’s weird because you are so proud of how far she’s come and all she’s done but at the same time devastated. Because in that moment you realize that no matter how many goals you set or how hard you all work, she’ll never be “fixed”. All of the talk about helping her fit in with her peers and improving her communication with them makes you realize that she’ll always be different. She’ll always struggle. We won’t be joining the band or working out Algebra equations or playing on a basketball team. Instead we’ll be learning how to sort mail and maybe laundry and cooking. In that moment it hurts. All of the emotions of her initial diagnosis come back to you and wash over you and threaten to crush you.
Thankfully it’s just a moment. You’re sure it won’t be the last and you’re thankful it only lasted a moment. Because in the next moment you’re thinking about how, when she started elementary school, she wasn’t really even talking. She was only walking a little bit. She was hitting and biting and pulling hair instead of using her words. We were working on being able to just be in class with her peers. Now she’s communicating effectively with her teachers and peers and fitting in very well. She walks all around school independently and runs in gym class and jumps on a trampoline. She only hits when she’s overwhelmed or extremely excited. She’s made really good friends. In that moment, and all of the moments that follow, you remember just how far she’s come and just how special she is. She is truly beloved by everyone who knows her. One therapist is teary during the IEP and says that she’ll never forget Olivia. I doubt anyone that has ever known her will ever forget her. She’s not typical, she’ll never fit in like everyone else, she’ll never be “fixed” and that’s perfectly fine with you. Because she’s your precious, perfect daughter and you couldn’t love her more.