I wish you understanding, true love, happiness and most of all the gift of knowing and loving an angel here on earth with Down Syndrome.
You see, a 4 year old doesn’t understand that without insulin, you die. A 4 year old doesn’t understand words like “incurable” or “chronic”—but they do understand that needles hurt and finger pokes sting.
In doing our laundry and cooking our meals and taking care of our children, they were putting themselves on the road with us. We didn’t have to face the task of getting our family through this crisis alone.
First of all I just want to say that I am very thankful for ears. And, I suppose just like other important body parts, I had just taken normal hearing and ear structure for granted.
When Gia was born, her left ear was deformed. I figured that if it looked malformed on the outside, that something might be wrong on the inside. I pestered the NICU staff about when the hearing screening would take place and I was not surprised when she failed. They told me that it was not uncommon to fail the screening because it was a generalized test and the NICU was a noisy place. But when she had her first sedated hearing test with the audiologist, her hearing impairment was confirmed. Since then she’s had several more sedated hearing tests, wears bilateral hearing aids and we see the audiologists monthly.
And yet, tonight, in the ER, I squeeze back a few tears, tears that feel like that mix of gratitude and fear that’s been stalking me since I gave birth seven years ago.
In the early days of August, at the end of my fifth month of pregnancy, my baby was brought into this world weighing just over a pound.
My son is a fighter. He has fought for almost everything he can do.
Hope is one of the most powerful, uplifting feelings. But it can also set you up for the possibility of crushing defeat.
She may be a child on the autism spectrum, but will the label change who she is?
That’s what I want for my son—a world populated by curious people willing to engage with him in his world.