Friday, January 22, 2016


At our house, we spend a lot of time focusing on the here and now. While the here and now is sometimes stressful and chaotic, it’s often filled with a sense of happiness. However, I’d be a liar if I told you I don’t worry about Emelyn’s future. While I don’t have a crystal ball, her diagnosis gives us a glimpse into her future. Emelyn will likely face challenges with communication as many girls with DDX3X are non-verbal or have very limited spoken language. Due to Emelyn’s low muscle tone, she’ll likely struggle with both fine and gross motor skills making everyday tasks like climbing stairs or preparing meals cumbersome. We work every day with therapies at school, in the clinic, and at home, to help Emelyn overcome these challenges, yet the worry is still there.

Last week, I had the opportunity to meet Beth and her older sister, Melissa. They also gave me a glimpse into Emelyn’s future. Beth, now a grown woman, was about Emelyn’s age when her parents received her developmentally delayed diagnosis. While Beth’s mother served as her advocate for much of her childhood and into adulthood, it was Beth’s sister, Melissa, who picked up the torch to keep Beth’s best interests front and center as their parents aged. As Melissa and I spoke for the first time, we brought each other to tears. I admitted how I once thought Emelyn would be a burden to my oldest daughter, now and into the future, but how I’d really grown to know that wasn’t true. I told Melissa her relationship with Beth gave me so much hope and joy for my own daughters. Melissa told me that Aubrey will not only want to take care of her sister, but she’ll be in a better place to empathize and care for others for the rest of her life. “She’s going to be an amazing person because of her sister,” she told me.  

Aubrey was super excited to get footie pajamas, but
even more excited when her sister got a matching pair.
Aubrey’s not blind to Emelyn’s developmental delays. In fact, when Emelyn was born, so were several other babies in and around our family. Those babies, now approaching three years old, have been walking and talking for nearly two years. We’ve always told Aubrey, and other children who ask, “All children are different and Emelyn is just on her own schedule.” It’s not a lie, but it’s not the whole truth either. I’ve always wondered, do we sit Aubrey down and have “the talk” with her about Emelyn? While we’ve always answered every one of Aubrey’s questions with as much detail as necessary for a six year old and tried to encourage her to share her thoughts and feelings about things that concern her, “the talk” always seemed unnecessary, at least right now. I was grateful to Melissa for reassuring me that I don’t have to have “the talk” with Aubrey. She told me Aubrey will learn from Patrick and I how to stick-up for her sister. And one day, when the time is right, “the talk” will just naturally happen. Until then, we’ll let Aubrey observe, ask questions, and continue to develop a profound love for her sister.

Most younger siblings look up to their
older our house, it's Aubrey who
looks up to Emelyn.
Worry…it’s a pointless activity all parents do. Before Emelyn, I spent far too much time worrying (and complaining) about the most ridiculous things, and I’m not saying I don’t do that anyone, but I can promise you it’s a lot less frequent. Being a special needs parent brings a different perspective to life and for that, I’m grateful. I’m grateful this different perspective will be a part of Aubrey too. Meeting people like Melissa and Beth is a reminder of the love and support that will always fill Emelyn’s life. And because of that, I have no reason to worry.

Sunday, January 10, 2016

At least she didn't say bah humbug to school...

Who would have thought it, but Emelyn may have enjoyed school more than she enjoyed Christmas. Leading up to Christmas, Emelyn seemed into the holidays. She enjoyed the Advent services at church on Sundays, she listened to Christmas music with interest, and she even cracked up every time we asked her if she wanted to sing Jingle Bells. You would have thought celebrating Christmas with family and friends would have been fun too, right? What two year old doesn’t love presents, lots of cousins to play with, and unseasonably warm December days? Not Emelyn, that’s who! It was all just a little too much for her. Even the wrapping paper and bows were met with tears. She was over it before Christmas day even arrived. While Aubrey opened presents (typically everyone’s presents for them), Emelyn attempted to crawl out of the room, sometimes before the first present was even opened. And when we attempted to return her to the group, we were met with a very cranky little two year old. By the Monday following Christmas, she was back to her chipper self and while she had some new toys to play with, she still ventured to her old ones, as if to say, "I’m really not into the whole Christmas thing." I guess there’s always next year.

Emelyn with the giggles on Jan. 5, her first
day of preschool at East Salem Elementary School.
School, on the other hand, seems to be a winner in Emelyn’s book! She went from high-strung and cranky to laid-back and up-for-anything…in other words, back to her normal self. She got on the bus like a champ. The look on her face as she rode the chairlift in her stroller was priceless. And circle time, complete with story and singing, went well too. I was a little worried she might decide she could crawl away if she wasn’t interested, like she does at home when I pick a less than thrilling book or song. Luckily, we’re off to a good start. Thanks for all the love and excitement as Emelyn began her new journey this week. We’ll be sure to keep you posted as her journey continues.

Daddy showing Emelyn the bus on the first day.