Things I Don't See

     Yearly evaluation time came around again for our little family. It’s a time of nervousness- and I’d be lying if I said that I wasn’t hoping for there to show some across the board improvement in Natalie’s development. And although her social skills were above average and cognitive skills on par, fine-motor & gross motor were delayed and speech was on the line. So our little family is gaining a developmental therapist and we hope that she is as much a blessing to Natalie as her Physical Therapist is now. 

     For those of you who don’t know how an early intervention evaluation meeting goes, it’s something along the lines of a game of 20 questions on steroids. Your mind is racing trying to think back about everything that your child does or doesn’t do. On the questions you can answer yes to and give examples for it’s the coolest feeling. You’re showing videos and telling stories of cute things they did in regards to that particular milestone. You’re all excited to share because you’re there every day. You see the little improvements and the efforts that go into kicking a ball or figuring out a shape sorter. Those milestones were earned in sweat and meltdowns and countless hours of encouragement. And you bet your boots you’re gonna tell anyone who asks all about it.

     But then comes the “what are some of the things you don’t see with your child” questions. There’s the questions you can’t say yes to, and a little bit of your heart sinks. I think it’s because in that moment you blatantly see what you’ve almost forgot- that things are going to be different for them- harder. Not impossible but not as easy or as quick for our children like it is for most others. 

     As Natalie ages those “Things I don’t see” questions get harder and harder to answer. Because I don’t see things the way I did a year ago when her diagnosis was fresh and scary and every little action or inaction was scrutinized and studied. I don’t see the classic Sotos features in the shape of her head and eyes. I see eyes as blue as my mothers and hair the exact shade as her father’s. I see my smile on her little face. I see Natalie and she is “normal” to me.

     It took me a while to see that the “things I don’t see” are not the things that truly matter. Don’t get me wrong, developmental skills are very important. I definitely am the type of Mom to do everything in my power to make sure she has every resource made available to foster her development. But I’m not going to let the things I don’t see overshadow the things I do. Determined. Fiesty. Kind. Happy. Funny. Beautiful. Cherished. Loved. Wanted. Strong. - those are the things I see when I look at my daughter. That won’t ever change. 

A Life Is Made In Little Moments

     Maybe it’s the fact that my daughter just turned two but lately I’ve been thinking a lot about how blessed our little family is. And how blessed in general our life is. A lot of my posts talk about the struggles and fears that go along with the Sotos Syndrome diagnosis, but not today. Today is about Happy. Today is about celebrating all the ways our lives have been made beautiful by a child who just happens to have Sotos Syndrome. Today I’m going to share moments.

 I think sometimes we get caught up in the big moments that we forget to cherish the little ones. We forget to look down from our careers, our ambitions, our fears, our own internal dramas and we miss those little seconds of perfection. I’ve caught myself doing that a lot lately, but not anymore. Those little moments are priceless and they don’t last forever. My career can wait… this life with our child is too important to miss.    

If I could’ve sent a message to myself a year and a half ago when I first heard the words Sotos Syndrome, it would’ve been this post. I would’ve told myself that for all the scary moments there are hundreds of happy little moments just like these. For all the uncertainties there is hope. For all the struggles there are triumphs. I would have told myself that a life is made in little moments and our little moments are beautiful.