My daughter Emelyn’s first year was
probably the toughest emotionally. Suddenly my picturesque family
portrait wasn’t anything like I imagined — there’s
maybe a wheelchair or leg braces or facial dysmorphisms or who knows
what. The thought brought me to tears on more than a few occasions.
Now, two years later, I roll my eyes at
that picturesque family portrait for more than a few reasons. First, I’m
so grateful to have connected with other families who also have
children with special needs, and those families have some of the most
beautiful family portraits I’ve ever seen. The presence of breathing
machines or posturing or forearm crutches is not what I see — it’s
a family filled with love and hope that I see. Second, the thought that
my family would be something I’d be sad or ashamed of still baffles me.
Today, I count my blessings each and every day and will continue to do
so no matter what comes next for our family.
As I look back at that first year, I realize now I was still a stranger to the special needs world — to
my own situation. I was still very much on the outside, in denial you
might say, looking into a world that scared me. It wasn’t “normal.” I
pitied myself. I felt sorry for my child and for her sister who would
one day see her as a burden. I’m not sure what changed, but I’d like to
think it was all those little Emelyn giggles brought to you by God
Himself. I didn’t one day wake up to this new perspective in my life,
but I’m grateful my pity party didn’t last too long.
Now, however, I become impatient with
others who want to pity me. It’s unfair, I know. They’re outsiders, and
it’s impossible to understand when you’re peeking into my life. It’s
probably why I took so long to share our journey publicly. It was a
regular occurrence to share Emelyn’s diagnosis and developmental delays,
only to receive a somber and pitiful, “I’m so sorry,” or “I’ll pray for
you,” from the other person. It’s not that I don’t want someone’s
prayers. Emelyn is in my prayers every night, and I’m forever grateful
to everyone, including perfect strangers, who also pray for her. But
please don’t pray for my child because you feel sorry for her.
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Pray for her the same as you pray
for our “normal” (insert lots of sarcasm here) child. Pray she grows
strong and healthy, stays safe, is always loved and happy, and knows and
loves God. Those, my friends, are all I ask from you.
There’s no need for pity. I can
promise you that Emelyn doesn’t feel sorry for herself. She finds
herself to be quite funny, actually. And Emelyn’s big sister, Aubrey,
certainly doesn’t see her little sister as a burden. To her, broccoli is
a burden; her sister is the most important person in the world to her. I
don’t ever see that changing.
So, it’s with my insider’s view that I
share my perspective on what I believe are God’s unique blessings. The
next time a friend, co-worker, family member or perfect stranger tells
you about their child’s unique challenge, whatever it might be, don’t
apologize or take pity on them. Lift them up and share in their hope and
love for their child. Don’t be afraid to ask questions. Ask about
today. Ask about the future. Ask about ways to support their efforts. You don’t need to pretend to understand or be in their shoes. We get it — you’re on the outside looking in and we’re grateful to have you as a supporter sharing our journey.
And the next time you see a family
portrait that isn’t a “normal” family, know that life may not be easy
for that family, but it is a blessing nonetheless.
