It was the 4th of July and we dared to be in a parade with David.
Actually we did it for the girls.
The thought of being the center of so much attention made them giddy. So I spruced up the rusty old wagon we picked up at a yard sale and coordinated our patriotic outfits.The hardest part was waiting around for things to get started. David doesn't do waiting--it's strictly against the autistic code. Instead he headed for the church building nearby and tried to open the locked doors. I think he was hoping to find an elevator inside. The girls didn't do so well either, they kept knocking each other with their flags.
Finally things started to move and we caught up with Rob and Dave half-way down the block. I managed to coax David into the wagon without too much of a fight and he ended up being the only one who rode in it. Skye, my strong-willed 2-year-old, insisted on helping her dad pull it along.
We got a lot of cheers, I guess spectators couldn't resist the sight of a 2-year-old wearing bright red Elmo Croc's pulling her 8-year-old brother along, or maybe they realized he was disabled. Either way we won the crowd. Emma walked alongside Rob waving a flag and I followed in the rear, ready to catch Dave if he decided to jump out.
At the end of the day as I sat in David's room waiting for him to fall asleep, I reflected back on the day's activities. The image of Skye pulling the wagon in the parade lingered in my head and with it came the realization of its symbolism: 2-year-old Skye helping to pull her 8-year-old disabled brother along depicts how our whole family shares the load of caring for David. The bulk of this burden may fall on Rob and I, but Emma and Skye feel its weight too.
They share in our feelings of grief and heartache and are impacted by the endless adjustments and sacrifices that need to be made. I worry the girls don't get enough of my time and attention and feel guilty when they miss out on activities because of Dave. But I feel just as guilty when we're off doing something fun together without David. When he's not with us, our family feels incomplete and I miss him. It's a juggling act, with no sense of balance.
Five-year-old Emma has taken on the role of being a big sister to Dave. She's quick to chase after him when he runs away, helps carry his backpack to school and asks if she can help feed him. Even Skye has stepped into a care taker role. She loves to bring Dave his shoes in the morning and hurries to find a diaper when I change him.
I worry about what "issues" Emma and Skye will have as a result of having a disabled brother, but at the same time I know our family situation provides an opportunity for them to develop special gifts. Like empathy, compassion, acceptance, tolerance, and above all love!
When Emma came home from kindergarten and asked, "Guess who my boyfriend is?" I cringed. I wasn't ready for her to take this developmental step. But then she quickly responded, "David, I'm going to marry him."
Her sweet innocence warmed my heart. I wanted to hug her so hard for loving and accepting her brother.
I've tried to explain David's differences to Emma. She has a tender heart and gets teary-eyed when I talk about how sick he was as a baby. Until recently she still believed David was going to grow up and be "normal."
"Let's buy him a really big prize when he learns to talk," she declared. It was with a heavy heart that I decided it was time to explain he's never going to learn to talk. Through her tears she questioned me and desperately tried to come up with reasons why I was wrong. She wasn't about to give up on this dream without a fight.
On another occasion she came running to find me. Jumping up and down she announced with glee, "David's playing with me, he likes me now! He likes me now!"
Does this mean she thought he didn't like her before?
That would be so sad. I fumbled around my brain to find a way to explain David's social avoidance to Emma. I wanted to make up for all the time she'd thought he didn't like her.
I added this concern to my growing list of worries.
Its a long list.
But even with all of my angst, I continue to cling to the belief that this experience is making my family better, stronger and more loving.
David may be the first-born, but he has two "older" sisters looking out for him, helping to pull our family along.