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.
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| 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.
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| Most younger siblings look up to their older siblings...in 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.
