• Sometimes, when strangers ask if Max (who’s six) and Sabrina (who’s four) are twins, I say yes. It’s just easier. • It is awesome that Max is trying to drink out of a cup by himself and feed himself, but I get tired of cleaning up the mess. • I do not use Max’s…
Category Archives: Conditions and Diseases
Is it wrong to not hope for the miracle?
As you read this, I am in Raleigh, North Carolina with Max and my husband; tomorrow, we are going to Duke University to get Max a stem cell infusion, using the cord blood we banked after his birth. You’ve probably heard about stem cell therapy. It’s still considered experimental, but there’s no evident potential harm….
Confession: I still get sad when other kids ask about my kid
“How did Max get that bump on his brain?” That’s my best friend’s five-year-old talking. It’s how my friend explained Max’s disabilities to her. It’s Saturday, and we are driving in our car; Max is actually in my friend’s car, because he thought it would be fun to trade, and her daughter is riding with…
Their eyes are precious
August is Children’s Eye Health and Safety Month My older daughter, Makayla, started out as typical as they come. Running and jumping, laughing and crying just like her friends. When she was four, we noticed that she was putting her face very close to the page when she was looking at books. As kindergarten grew…
I am the captain of this special needs ship
I called up a pediatric hematologist the other day. Max, who’s six, has two blood mutations that increase his risk for clots; they discovered them after he had a stroke at birth that caused his cerebral palsy. We took him to a big-deal pediatric hematologist when he was an infant, who told us we could…
The weaning process.
I think that I am the president of the “I hate Prednisone” club. While this little corticosteroid has it’s place in the medical world and definitely (unfortunately) in the life of my almost four year old daughter, I still loathe it. Ivy has been on this medication now for about 18 months and it supresses her…
Letting go of dreams for your child, building new ones
A parent I met through my blog, Angi, mom to Elizabeth Ann, mentioned an expert named Ken Moses the other day on a post I did about getting past grief. He’s a psychologist and speaker who helps people deal with trauma, crisis and loss, and father to a child with cerebral palsy. I Googled him…
Two Sides To Every Story
Yesterday afternoon I sat in a meeting with a behavior specialist, a case manager, day support staff and group home staff – all to discuss my daughter, Jessica and her ongoing and increasing aggressive and negative behaviors. Jessica’s negative and aggressive behaviors are not new. Every since I adopted her nine years ago, she has…
When friends say painful things about your child
It’s Saturday night, I’m in Chicago for the BlogHer conference. A good friend of mine lives there. This is a good friend I tend to avoid talking on the phone with since inevitably she asks, “Is Max talking yet?” “Yet.” “Yet” is a horrible word to use when you’re talking with a parent of a…
Helping people see beyond the disability
It’s Sunday evening, we’re at our favorite local diner. They know us here, but tonight there’s a new waitress and Max has a crush on her. All she has to do is smile at him and he giggles. Max finishes eating, jumps up from the table and proceeds to stroll around the restaurant (it’s one…