Dear Mary

My goodness! Two years have gone by without a post. Partly it's because life has been so busy with my 3 miracles and partly because this was more of an exercise in self therapy when it began. Don't get me wrong, there are definitely times I still need the therapy but for the most part I am doing well with this whole motherhood deal.

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)

Anonymous said...

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friends, and my wacky personality- half childishly hyperactive maniac that talks nonstop, half spacey, antisocial, withdrawn, kinda creepy loner- doesn't help.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, 

Meghan


For anyone else who needs more information please visit Tourette Association of America

World Down Syndrome Day- Celebrating the 21st Chromosome

It's here! It's World Down Syndrome Day and that's a big deal around here! I look at WDSD not only as a day to celebrate the boys and all those with Down syndrome but to celebrate the strides we are making every day in raising awareness, increasing acceptance and encouraging open dialogues and open minds. What great reasons to celebrate!

Today, in their preschool class, Casey and Connor will celebrate their bonus 21sts with their friends and teachers and they will do so wearing shirts specially made for the day as a craft project earlier in the week- tie dyed blue and yellow! Their class also made blue and yellow flowers for the other teachers to wear and made special treats to share with the other classrooms. I am bringing in blue and yellow iced cookies for snack and wrote a brief note to be sent home with each child in the class. It explains what WDSD is and thanks the other parents for raising awesome kids who are learning inclusion and extending friendships to those who may seem different from themselves.

Think about that. Think about that whole paragraph above and then think about the impact this one day could potentially have on hundreds of lives. Casey and Connor have 7 other children in their class plus 2 teachers. Every other classroom is made up of roughly the same number of students *between 9-12 students in each class). Each of those children will have an introduction to the idea of WDSD as a reason to CELEBRATE what makes us similar AND what makes us different. If even a tiny portion of that idea sticks in their minds we have begun moving mountains. Awesome.

Now, multiply that effect as at least a portion of those kiddos will go home and talk to their mom and dad or grandma or babysitter about the day and that could potentially open up conversations or plant the seeds of change in someone's mind. Now multiply that further and realize that this is just in MY kids' school. Celebrations like this are taking place in classrooms all over the world. The reach of this ONE day is mind boggling. Millions of people the world over could potentially be touched by WDSD and who knows how many lives could be saved if a parent is given a prenatal diagnosis of Down syndrome but they were effected by WDSD or how many new friends could be made by making children realize that their classmates with Down syndrome really are just like them. It makes my heart swell with joy.

Beyond the festivities at school, we will be celebrating alongside several friends from the Up Side of Downs at an indoor playground! After that, I will be attending an open house at Dream Out Loud Studio- an absolutely outstanding studio for artists with developmental disabilities that is run by the Summit DD. It is my intention to talk to as many people as possible today, to share our message with as many new folks as I can.

There is one other goal for the day and that is to hug my boys as many times as I can and thank them for changing my life, for forever altering the very fabric of who I am in ways that I could never have imagined. I will hug them and find more joy than usual in their smiles, in the way their sparkling brown eyes slant up just so, I will remember to enjoy the beauty of that single palmar crease, their cute little ears and the way that they look when they run, smile and laugh. I will celebrate every breath they have taken, every milestone hit, every goal yet to be accomplished and I will do all this with nothing but absolute joy and pride. I will look at my boys and KNOW that I have been given a gift far better than anything sold at Tiffany & Co., something far more precious than any artwork- I have been given LOVE in the shape and size of 3 year old miracles. I have been given little angels without wings. I have been given a mirror that shows me the potential of MY life if I live in a way that makes God proud and makes my boys proud. I have been given a glimpse at perfection, innocence and the purity of spirit that only a child with Down syndrome has. All children are amazing but a child with Down syndrome has accomplished so much in their life by simply refusing to give up when things are difficult. A child with Down syndrome works harder for every single milestone than I have ever worked for anything in my life and they do it in a way that enhances the lives of those around them. What better gift could there possibly be??

Today, I will also celebrate my gorgeous baby girl who accomplishes things so easily. I will celebrate the fact that she will grow up with 2 brothers who love her unconditionally, who look at her like she is the most fascinating creature on earth and who adore her without limit or reservation. I will celebrate that SHE will grow up knowing more than I did, more than her dad did and I know that she will impact this world as much as her brothers do solely because she got to grow up in a household that will teach her to respect those that others may blow off and to lift up those who may be weaker. She will always know that she is loved, that she is special and that she is important just like her brothers.

Finally, I will celebrate today for all the parents out there who are not quite ready to celebrate it yet. I will hold in my heart those who just got the diagnosis or who have a baby or child with Down syndrome who are not yet able to see the beauty of the extra 21st chromosome. I will celebrate that I was once at the stage where celebrating was the furthest thing from my mind but my heart was changed and I learned to not only embrace Down syndrome as part of my life but that I also learned to truly, genuinely LOVE that it's part of my life. I celebrate ME for how far I have come. I will also let those parents who are not "here" yet- that it is OK to not be ready to celebrate. It's OK to feel overwhelmed or unsure. It's OK to not love the challenges that come with DS. Just open your heart to the beauty of this life and in time the celebrations will come.

There are many things to accomplish today, much joy to be shared and many hearts to touch. I chose to start that journey here, with you. Please share these words with others if you feel moved to do so. There are so many to reach.

God Bless and Happy World Down Syndrome Day!!!
-Meghan