“There is hope for your child.” “And for your family.” Before you throw your computer across the room, bear with me for a moment. Because I’ve oft wanted to throw the computer (or throw up…) when people band-aided my heartbreak with platitudes over the years. So I understand. But today, after another hours-long appointment with…
The Worth of a Soul: The Story of Kirill
According to a judge in Russia, a little boy with Down syndrome is better off in an institution than with a family wanting nothing more but to love and cherish him. In other words, that extra chromosome to this judge is worthy of only one thing. A death sentence. My friend Veronica holds dual citizenship…
Break on Through, To the Other Side
Lately, as much as I love this writing gig, I’m lost as to what to write about. I set about asking my wonderful facebook friends what they thought I should write about. Thankfully, 2 of my friends came to my rescue. (Do you have anything you’d like me to post about?! Let me know!) So,…
My breath caught in stunned surprise…
It was almost 6 am and I was helping Olivia, my pretty typical ten-year old, review for her Science test. I say pretty typical, because O has a mitochondrial disorder just like her more affected younger sister. O doesn’t use a walker or wheelchair, instead she runs until she is tired. She spins, she walks, she sits…
It’s Official
After 5 years, innumberable doctor’s, therapist’s and specialist’s appointments, blood tests, x-rays, MRIs and on and on, Precious is no longer “developmentally delayed with a suspected developmental disability” but is officially developmentally disabled (aka ‘MR’) and we have the psychologist’s report to prove it. I wasn’t surprised when I heard the results, but I cried…
Encouragement…
Right now. This second. Today. Go look at yourself in the mirror. Yes, I’m talking to you. Look at the tired eyes. The unbrushed teeth. The skin that could have used a little extra moisturizer about 4 years ago. The unshowered. The unshaven. The borderline crazed… (what?! As if you don’t know what I’m talking…
Autism Superpowers
When Luke was first learning to understand his autism (and his, brother’s) he came up with his own explanation of how it worked. We explained to him that everyone had sensory issues, or had something they were afraid of or something that bothered them. He decided that everyone had autism, except that some people had…
Eradicate the “disease”?
A while back there was an article about a new test that would identify if your child had Down syndrome earlier in the pregnancy in a less invasive way. Dr. Patsalis was excited about this new test because it could help the medical community “slowly eradicate the disease” that is Down syndrome. I could go into…
Reports from Inside the Sandwich
It’s hard to say when, exactly, we became members of the “sandwich generation.” If I had to guess I would say it started around the time that my husband flew to his mother’s home in order to drive her back to our home so that she could meet our twins. This was about six months…
Newborn Screening Saves Lives
What once was a nationally-mandated test of newborns for six inherited diseases has now expanded to include as many as 100 disorders thanks to new technology. Yet not every state tests for every disorder. Early detection and treatment saves lives.