Here's the deal:
Lilly is my daughter and I love her to pieces. She is amazing and inspiring. She is not deficient in any way. She was born with an extra chromosome which makes her extra special, and only in a positive way.
She is my little girl. It doesn't matter to me when she does things, what timeframe she learns a specific skill. I am blessed each day that she wakes me up in a good mood (or a nutty mood), ready to tease me or cuddle me or be demanding about her need for Elmo. I love sharing our adventures together, learning more about each other. I am proud of who she is, and enthusiastic about our future.
It frustrates me that people notice what she can't do more than what she can do. I see everything she does - every single thing she does - as being something to be thankful for. If she can't do a certain skill yet, I'm not worried. I'm not concerned. She will get there in her own time. I can teach her, I can provide the tools for her to learn and grow, I can support her on her path, but I can't make her something that she's not, and I can't make her learn something before she's ready. And I wouldn't have it any other way.
This past week we had 5 evaluations for her NY IEP (I won't get into how ridiculously complicated it is to get an IEP here - and I can't imagine how a child with a less-involved family would ever get access to services). Most of the professionals came into my home assuming that we hadn't done our job as parents. And that Lilly should be doing better. I just got off the phone with a therapist who told me that Lilly should have more endurance when walking the streets of NY. Are you kidding me? This is a child who was born with low muscle tone, who has received physical therapy for the past 4 years (including our year in New Zealand when we paid completely out of pocket), who learned to walk at the age of 27 months, who is so motivated to try to the best of her ability. Of course she's going to get exhausted walking blocks in NYC. So do Jon and I - I can't imagine how her little legs do it. I see the progress Lilly has made and I am proud, so proud. But a random therapist who's seen Lilly for 20 minutes tells me she needs endurance.
Here is the thing: therapy to a young child can be great, it can be very helpful. But it's not a miracle. I think therapists approach a situation was wanting to "fix" it - but my child is not broken. She is constantly making progress. Therapy is a tool to go hand in hand with her ability. But if she's not ready to do something - physically, mentally - then she's just not ready.
In most ways Lilly is like her peers. She loves to read, color, she is potty trained, she can put on her shoes and socks. She can joke with me and share about her day and tell me every time she thinks of "Troy" (from High School Musical). She can work any piece of complicated electronic equipment. She's also an incredible judge of character. During 3 evaluations this week, Lilly left after 20 minutes. She walked out of the living room, went into her room, and shut the door. Who wants to feel like they are not good enough when they are trying their best?
One evaluator, though, was great. She was enthusiastic and positive. She asked Lilly to jump forward, and Lilly kind of step-hopped forward, and she said "Great! Good job!" Even though Lilly didn't do it correctly, she did what she could, and she was congratulated for that. The evaluator wrote down that Lilly couldn't jump forward yet, but the point is that this is an evaluation - not the bar exam. Lilly doesn't need to know if she got the "right" answer to a test; these people are just here to see how she does, which will determine how much services she will get this year. It's important for them to know what she can and cannot yet do; but it's not important for Lilly. Who wants to think that they've failed before they even know how to try?
From Lilly, I've learned patience. She has mastered so many things that are age-appropriate. There are certain skills though that she just isn't ready for yet. And that's fine.
It's like my running. I'd love to go out and run a marathon, but I'm only at the point of running 2 miles without stopping. I can run 3 miles with a minute walking break in between each mile. And that is fine. A better runner might look at me and say it's kind of pathetic, but I know where I was in March. I could barely run a minute, walk a minute, for 20 minutes, without getting exhausted. I'm proud of my progress, I know where I've come from, and I know where I'm going.
Same with Lilly. Every accomplishment is to be celebrated; we take nothing for granted.
In 2 months, I'll run my first 5K since high school - at Disney World of course. I will run for Lilly, she is my motivation. She tries her best even when it's hard. It is Lilly's motivation, determination, and hard work that inspires me.