Really, I don’t know. I wake up everyday and wonder how to manage. Today, he put his pants on, a wonderful feat, though they were backwards. His shirt too. Didn’t matter, we get excited about these steps, strides.
When he slept in an incubator, I wondered, when will this be OK? I didn’t know then. Genetic defec [...]
Who wants those old, big, needing-always-to-be-rewound video cassette tapes? We do. Compared to the DVD, the VCR works better for my son. The tape goes in, it plays until I push stop or it ends and there’s no skipping, freezing, or most importantly, choices like special features or language. We scoop up old VCR tapes at sal [...]
Instead of a burden, raising a child with special needs is a blessing. Pregnant with my second child, I knew something was different. Not one single test showed signs of Down syndrome. But, something was different. “Your son has Down syndrome,” the doctor said.
“How do you know?” I asked as I stared at the [...]
We can have it all. The end of the summer harvest reminds us of the bounty; brings forth the fruits of our labor. A tomato as ripe and red calls out to be eaten, enjoyed, and relished. (Tomato relish?) Anyway, as I was saying….
The baskets overflow and show us we can have it all. But, think about it, has anyone ever sat do [...]
Inside I keep secrets. Secrets of our sorrows; unsaid pain from those who’ve been cruel. I’ve stashed and dumped my embarrassments, failures, shortcomings, and self-worth into a bucket; topped it and thought I moved on. With an eye on that new job or new relationship, I can start anew! Or can I?
What will truly set us [...]
He held the stick up to the sky. Though he was laughing, I stopped. For a moment he wasn’t a child out for a walk, enamoured with a big stick; he was a warrior. It took a lot of strength to steady the long piece of wood above his head. He smiled and grimaced all at once. It was difficult to balance, yet he held on.
He is a [...]
A Down syndrome child is left behind by an Australian couple after a surrogate gives birth to twins. Given a choice, which would we choose? Do we really know? Perhaps we are not free to judge. Debating if one child is more valuable than another seems a ridiculous standard. Yet, why then did I feel so much terror, so muc [...]
I popped on the news feed before bed – (highly recommend against this) – and a study reported by National Public Radio appeared with this headline: With Gene Disorders, The Mother’s Age Matters, Not the Egg’s.
I read the article and felt like an idiot. I understood nothing. Now, I’ve read an awful l [...]
The fourth of July brings together families and friends; cooks up mounds of great food; and finishes with a bang at the end. Freedom, for some, is more than a yearly celebration. Freedom is the right to live with dignity, love, and have a safe place to call home.
I salute the thinkers all those years ago that figured out how to p [...]
When others take care of my son, whether for an afternoon or a few minutes, I’ll often get how wonderful he was; the challenges manageable. When someone stands witness to a cup hitting my head, I’ve gotten the statement: He never does that for me. Seems he always does it for me. After the rage, self-pity, and depressi [...]