Johanna Alexis Sklar was born on Wednesday, February 27th, 2008 at 3:15 pm in the afternoon. She was a month early, but at eight pounds, two ounces, robust and seemingly healthy.
Yet Johanna had a blockage in her intestine, a condition known as duodenal atresia, which required immediate surgery. My husband Jamie and I had known about the blockage two weeks earlier, when a routine ultrasound had showed something suspicious in her stomach. Several doctors from the NICU were in the delivery room when she was born, so they could check her immediately. And within an hour we had the news: Johanna did have an intestinal blockage, and she also had the features of a baby with Down Syndrome.
You can read about her birth and those first numbing days after delivery in the October 2008 issue of Baby Talk, linked to here:
Jamie and I never expected to have a child with a disability, and we certainly never thought we would be the type of parents who were able to handle it. But we’ve come a long way since that grim day in February when Johanna was born. Our family adores Jo Jo beyond reason, but there were definitely a few road blocks along the way. For the first few months of Johanna’s life, I suffered from severe depression. I was afraid to tell anyone because I worried that others would judge me for those feelings; that admitting to feeling lost and overwhelmed and not up to the herculean task of being the mother to a special needs child translated into people assuming I didn’t love my daughter. Finally, when Johanna was five months old I got help. I was diagnosed with both post-partum depression and post-traumatic stress disorder and put on medication. I readily admit that antidepressants, along with hours of therapy saved my life.
Today, Jo Jo is an incredibly talkative, active, feisty two and a half year old who loves (in no particular order) reading books, chasing the dog around, chattering to her Elmo doll, playing on swings and listening to music. Her days are filled with Birth to Three therapies, music classes, swim classes, ballet classes, trips to the park, playgroups, and tormenting her younger brother, Teddy, but she always has time at the end of the day to sing “Puff the Magic Dragon” and cuddle with me, her mamma.
My husband and I view Johanna as our daughter first, and as a child with Down Syndrome second. She may have 47 chromosomes, but her full genetic makeup comes straight from us. There are people out there who refer to individuals with Down Syndrome as possessing a “magic chromosome” or as a “gift from God.” That’s their opinion, and they’re entitled to it. But we think Johanna is magical and a gift because she is our adorable, bubbly, vicacious yummy little girl. And while she does have moments of angelic sweetness, there are many moments when I wonder if I birthed a demon child.
This blog is to document our life as a family, and to share what it’s like to raise a daughter with special needs, the rewards as well as the bittersweet moments. I’m proud of how far our family has come, and of our children.