Zoë's Page

My daughter, Zoë, was a fussy baby who has grown into a beautiful 15-year-old. Despite the fact that she does not speak, crawl, walk, or do much for herself, she is very patient and will play for hours by herself. And she always has a smile ready for a friendly face and an ear pulling for a patient dog. She loves new experiences, new toys, and going out anywhere, especially for walks and restaurants!

Zoë, 11 years-old

 

Zoë was born a healthy baby three days before Christmas of 1992. Her birth was relatively normal except for some thin meconium which needed to be suctioned from the trachea. She had a strong desire to breastfeed but needed some help from a lactation consultant because she wasn't gaining weight and had a weak suck. After I began pumping and supplementing with bottles of breast milk, Zoë began putting on some weight slowly. She seemed to be doing well except for what appeared to be colicky behaviors and an affinity for yeast infections.

When Zoë was around 5 months of age, I noticed she wasn't reaching milestones anywhere near the rate at which my son had. Looking back, I suppose I was in a state of denial, telling myself that Zoë's brother sat and crawled early at 5 months of age. I wasn't very concerned until a Birth to Three specialist (who was seeing my son for speech delays) mentioned to me that she thought Zoë seemed very delayed.

At 7 months of age, Zoë had a CT head scan. When her pediatrician phoned me with the results of brain malformations, I completely fell apart. All I can remember now is lying on my bed crying, wailing and feeling as if I'd die. I have no memory of anyone being in the house with me, just feeling completely alone.

Since that day I've had to change my entire perspective on life. It's been a long and difficult road, and by no means is it over yet. Zoë is now 13 years old and attends a wonderful middle school. In my estimation, her development is between 6 and 24 months. She has been diagnosed with Chronic Static Encephalopathy, Hypotonic Cerebral Palsy, Mild Diffuse Pachygyria, Mixed Seizure Disorder, Cognitive Delays, Sensory Integration Disorder, and allergies to Latex, Amoxicillin and Ceclor. She uses a wheelchair to get around, is fed by g-tube, can stand with support, and is now sitting on her own. She is a charming and sometimes mischievous young lady. =)

Pictures of Zoë from birth to present!

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