Being a mom of a special kind of bird, I have been privileged to see the best kinds of people and the worst kinds of people. Who knew there was such diversity, even in the tiniest of towns? When my girl was first born and we were finding all kinds of new and interesting things out about her, people felt encouraged to say whatever came to their minds.
"Oh she has seizures," said with a shaking head and downward glance. "My dog had seizures too and we decided to just put him down."
"Well, you know you aren't married and God really wants people to be married before they have kids. Maybe this is just a little reminder for you."
"Did you know this was going to happen to her...I mean...you wouldn't have kept being pregnant if you knew, right?"
The same way that people feel the need to tell their birth stories, all pain and horror, to every pregnant woman while rubbing her belly...that is the same way people approach parents of kids with special needs. That is, if they approach them at all. There really doesn't seem to be a middle ground.
And, even though I have gotten to see these negative aspects, I have also been fortunate enough to see the amazing bits too. There was the woman who smiled and made faces when Finn was screaming sounds during church...no judgment from her...just smiles at a girl who found her voice. Families who, year after year, come together to walk for epilepsy awareness...they volunteer and spend days setting up so that our girl can be a "shining star." There is the fabulous woman in the grocery store who listens to the same story, day after day, and still shows enthusiasm in all the right spots and listens intently (even though I am sure she could recite the story word for word by now.)
And, in a world full of specialists and appointments and scans and blood draws, we have been so blessed with an amazing doctor. Out in our neck of the woods, doctors aren't exactly a dime a dozen. The nearest city of any size is 90 miles away and to see Finn's neurologist, we travel five hours, one way. One of our favorite people is Finn's general doctor. She practices in the next town over and we see her an average of twice a month...sometimes more, never less. She is fantastic. She has been Finn's doctor since our girl was born and is, in all honesty, one of the main reasons we have never moved. She is available 24/7 and spends as much time answering our questions as we need. She is honest and funny and caring and a real member of our family. She has always told us that Finn will write her own song and never limit her based on what her specialists say. She emails or calls if she hasn't seen us in awhile and sees Finn as a whole person, not a diagnosis. The best.
Finn has been in swimming lessons for two years. Two years to pass a level and start a new one. During all those lessons, her swimming instructor (a teenage boy) has encouraged her and shared in all her triumphs. He showed calm patience and understanding when the seizures stole her ability to swim. He held her in the water...sometimes her whole class period. He never stopped believing she could do it. So she never stopped. This year, when she finally started talking more (more being an understatement) he never told her to be quiet or ignored her. He gave her his full attention and he engaged her, smiled at her, answered questions, listened to the same stories (over and over and over again.) He taught her to swim. He noticed when she wasn't at the pool with her PCA and even texted her to make sure everything was OK. When she passed from a turtle to a shark, I don't think that even I was more proud of her than he was. Even though he wasn't teaching the shark lessons, he still checked in with her (and even noticed when she lost a tooth.)
Good PCAs are hard to come by. We have had good PCAs and we have had bad PCAs. This summer, Finn had a PCA that was a perfect match for her. She spent hours and hours at the pool with Finn, practicing her lesson skills and encouraging that love of water. She pushed Finn, just past her comfort level...encouraging her to grow and push herself. She never let Finn give up on herself. She was firm and fun and fantastic. We will miss her so much when she goes back to college.
There are many days when, as parents, we are tired. We are tired of the fight, the battles to have our children seen as children...as special but not because they have disabilities but just because they are special...like every child. We encounter hurdle after hurdle, comment after comment, and look after look that tells us we will never be "normal." We are different no matter how much we dress it up. No matter what cool clothes or what trendy device or where we vacation or what snacks we bring on snack day, we don't fit. But...some days...we are blessed with the amazing doctor who sees a child and not the diagnosis. We are met with the acceptance of instructors who embrace our child's uniqueness and don't see the burden but instead they see the gift. Luck grants us the people who push our children to excel instead of being complacent.
In our house, we choose to see the gifts. The blessings far outweigh the burdens. Joy, in our home, is in the little things...they really are the sum of life.