When you have a child with special needs, you hope that you will get to say the kinds of things that other parents hope to say too:
"Run to first base!"
"Great job on your report card!"
"I'm so proud of you for four years of hard work in high school."
"You're the most beautiful bride I've ever seen."
But you also dream of other things, phrases that other parents don't ever think about.
You dream of saying "Take little bites!" because it means your child is eating on her own.
You dream of saying "Stay away from the stairs" because it means your child is walking.
You dream of saying "Leave your brother alone!" because it means that your child can keep up with his or her sibling.
You dream of saying "Let's get packed up for our vacation" because it means your child is well enough to travel.
You dream of being able to tell the school nurse that "He's going to stay home with a bad cold" because if that is your biggest health concern, you'll be so grateful.
A few weeks ago, I happened upon a blog post that I immediately sent to DeDe, and it really resonated with both of us. When you have a child who is born with special needs, who is not as society describes as "normal", your expectations and perceptions of your entire reality change. You suffer a bit of a loss from the child you expected. But you also experience another loss - the loss of the mother you expected to be.
The kind of mother who takes her kids to the museum and library on a weekly basis instead of therapy and doctors appointments. The kind of mother who mixes up her own baby food instead of running a feeding tube each day. The kind of mother who spends summer mornings at the pool instead of trapped inside because the air is too hot and the water is too cold for my child's body. The kind of mother who braids her daughter's hair instead of cutting out dead skin stuck in the fuzz that is barely growing out of her scalp.
But while it's easy to feel some of this loss of both the child I expected to have and the mother I expected to be, I also get to be Brenna's mother. And everything that we have been through together has made me a much more accepting and empathetic person and a much more appreciative and involved mom than the mother I would have been.
It makes me all the more grateful for the opportunity to tell Brenna the things that other parents might say without a second thought and to celebrate every little thing that she achieves that come so naturally to other children.
I am so excited to congratulate Brenna on the day of her high school graduation and to tell her how beautiful she looks on her wedding day.
And in the meantime, I will be waiting with a hopeful heart for the day that that I can say "take smaller bites!"