Less than two weeks before this year’s Step Up for Down Syndrome walk, I set up a Web page with Raphael’s picture and sent its link in a short e-mail message to friends and family. Since I didn’t have much time, I set my sights at raising $500 to support the Mile High Down Syndrome Association, a Colorado nonprofit that supports people with Down syndrome and their families.
By the next morning, I was stunned to learn that I’d already reached my goal.
So I doubled it and have since exceeded that goal, too. Donations are still trickling in and the event was over a week ago. I never once made another ask aside from that original e-mail message. Astounding.
For the past three Septembers, Raphael and I have participated in Denver’s Step Up walk to raise needed funds and awareness. At our first walk, he was teeny tiny, just weeks out of the NICU. I remember feeling as though I was being initiated into a club I hadn’t intended to join. It had been emotional, joyful, and important. And eye opening.
I’m the crazy lady nursing the baby amidst a few thousand walkers at the 2009 walk.
At times, raising a child with Down syndrome seems like it takes superhero effort, and I do my best to fulfill the role. In reality, it is sort of like parenting on steroids. I do the same things any parent would do for her child; it just takes extra oomph. The hundreds of families (see some here) at the Step Up walk are all doing whatever it takes, and loving their kids, and feeling blessed to have such extraordinary children. Same as us. Same as all parents, really. I suppose all of us parents could use some extra help.
Many people stepped up in the beginning of Raphael’s life. We get ongoing help from Raphael’s team of therapists and service coordinator, his many medical specialists, and our outstanding new babysitter. I am extremely fortunate to have a sister who helps us pay for activities for our children. But parenting can be a long, isolating road.
I often wish I could get more day-to-day, active help from friends and family – mostly family. Few live close enough or have the capacity. I envy people who have close-by family who offer respite and share the burden of raising children.
Not to say friends haven’t gone out of their way for us. One mother of two cooked us two healthy homemade meals (including purees for Raphael!) and mended some items for me last spring when the world was spinning out of control. Others let me vent from time to time without adding those unsettling comments that parents of typical kids regularly, yet inadvertently, make. My yoga studio extended the time limit on my punch card because I just can’t get to the studio enough. Things like that. Small things that truly mean so much.
If only such help were more, I often wonder. But support takes many forms. I recognize it when I see my sisters, brother-in-law, and so many friends from near and far donate to our chosen cause.
People care about my family, and about my little boy with an extra chromosome, so much that they support an organization that helps many others because it is something I care about.
People put their money where their heart is. They support Down syndrome awareness because they love us.
If it weren’t for Raphael, I might have never known how much.