I am coming out of "retirement" for a very special reason. I was sitting in Reagan's room last night impatiently waiting for the little Owl to go to sleep and decided to check my email. I had a notification that I had a new comment on the blog. As I read the words that young Mary wrote on my 1st ever post (#1) I found myself crying. Her words touched me so deeply. Since her comment was anonymous I didn't have a way to respond privately but I feel like the words I have for Mary are words that everyone can benefit from in some way so, an open letter on a blog I've neglected for 24 months was the answer.
First, her comment (I debated re-printing it here but since I was able to publish it on my first blog I felt like it would be ok here, too)
- I'm a fifteen year old girl that stumbled across this blog by chance. I
know it has been been many years since this very first post but after
reading just a few of your most recent posts I decided I wanted to read
it all from the beginning. That letter was very beautiful. It made me
really happy to read those nice things, because even though they were
not directed at me, it made me feel better about myself and my
condition. I was diagnosed with Tourette's syndrome when I was twelve.
Since then I've been through a lot. I've been bullied, suffered a lot of
pain, both physical and emotional and it sometimes makes me feel really
awful about myself. I often feel like disgusting, idiotic-looking,
freak. I worry I'll never find a a boy that will love me for who I am. I
already have a hard time making friends, and my wacky personality- half
childishly hyperactive maniac that talks nonstop, half spacey,
antisocial, withdrawn, kinda creepy loner- doesn't help. And my family
isn't always supportive. My sister often accuses me of faking and my dad
frequently lashes out a me with angry words and never understands.
Thank you for the kind words, they may not have been for me, but they
certainly spoke to me and anyone who struggles with a difficult
condition. I cannot wait to read the adventures of you and the boys, and
later their sister.
-Mary
Now my response.
Dear Mary,
Thank you for your kind words. You have no idea how much they struck me and how much the mom in me wants to give you a big hug and tell you that you are perfect just the way you are. You have challenges that not many people can relate to and that makes things harder which is totally unfair because being 15 is hard enough already! But I promise you one thing, Mary, the kids that deal with challenges in high school and make it through make the coolest adults! In fact, my very best friend in my life has Tourette syndrome. I met her my freshman year of college and almost 18 years later we are still best friends. Her diagnosis doesn't matter to me. Half the time I forget all about it because her personality and her willingness to love me for my faults trumps her occasional tics. She is beautiful and perfect just as she is- I wouldn't change my Miranda for anything. And do you know what, Mary? She is happily married with 2 beautiful little girls. Your future can be anything you want it to be so don't let anyone tell you any differently!
When I look at my kids I feel so blessed because they are each exactly the person they were meant to be and as their mother I love them unconditionally. Does that mean I never get frustrated with them? Nope! I am a very flawed person and sometimes impatience wins out over patience, anger wins over calm and in those moments I know I am wrong but again, unconditional love does not mean I am perfect. I am certain that your dad loves you. Adjusting to a new diagnosis is not an easy thing. Parents want everything in life to be good for their children and it is really hard when we can't control things. It is painful to watch your child struggle. There are no words that I can find to express that well enough. I physically hurt when my kids aren't immediately accepted or when they work so hard to do something and still can't get it yet. Another example of that is when Casey and Connor want to play with a new child at the park and that child looks at them like they have 2 heads and runs in the other direction, it breaks my heart. It doesn't happen often but it does happen and it hurts so much. If I were a different person that pain may come out in a very different way. Instead I wait until they are in bed to cry a little, to let myself feel that pain and then I work even harder to raise awareness so that the next kid isn't quite such a turd.
Sisters are just kind of jerky sometimes. It just is what it is but at the end of the day your diagnosis may be hard on her, too. (Does it seem crazy that everyone else struggles with it as much as you do?) I am sure that your "wacky personality" may be overwhelming to her. I always try to remind Reagan how important she is in her brothers' lives. I know it can't be easy for her to be carted to therapy waiting rooms, to have to wait for things because C&C need me more at that moment, and all the other things that come from being a sibling to kiddos with special needs. She is so important to her brothers and they adore her. She gets mad at them sometimes but she ALWAYS loves "her big brothers!"
Maybe you could write a letter to her and your dad letting them know how you are feeling- writing my feelings always seems to help me. And sometimes writing them is more effective because the other person has a chance to really read and let your words sink in and they can respond calmly and rationally.
Mary, I don't know you but I can promise you something- you are perfect just as you are. You are a special person who will grow up to be an awesome adult. You'll find a best friend who loves the way you are and a man that makes you want to be the best person you can be, that loves you regardless of your Tourette syndrome. You will be stronger than the people that never had to fight for anything. You will make a difference because you have experienced challenges that the people who had it easy growing up never had to deal with. It may not sound like much but these things give you character. Character has gotten me through so much! Love yourself, Mary. Love you for who you are. That is the biggest challenge of all because rarely are other people as cruel to us as we are to ourselves. Start by listing everything you love about yourself. Read that list everyday. Tell yourself only the kindest things. YOU deserve YOUR kindness. Build yourself up so strong that no one can tear you down. Look in your mirror and accept that you deserve kindness, compassion, friendship and love. Refuse to settle for anything less. Always be your biggest cheerleader. Laugh at yourself kindly. Just be amazing. You are amazing. Do you realize your words moved me in a way that few have done lately? I have been thinking of you since last night and wishing I could tell you what an incredibly special young lady you are and how much your small act of reaching out opened my heart.
You're exactly who you are meant to be, Miss Mary. Own that. Rock that. Change the world. Love yourself. And remember that this momma thinks you are valuable, worthy and pretty damn awesome.
Love,
