This is the ongoing story of my first-born daughter, Monica.

Monica was born with an occipital encephalocele.

She also had multiple birth defects including skull malformation, constriction of the right arm and missing fingers (from amniotic band syndrome), and multiple disabilities including cortical blindness, severe mental retardation, cerebral palsy and seizure disorders.

This is the story of Monica's birth, development, struggles, joys, and strong determination to learn, participate, communicate and explore.

The full-term pregnancy of our first child was normal and an early ultrasound showed no abnormalities.

Unexpectedly, within minutes after childbirth, our baby was taken by interns to examine a large sac that protruded through an opening at the back of her skull. Within hours, our newborn was transported by ambulance to a major hospital's neonatal intensive care unit.

The birth defect was diagnosed as a neural tube defect called an occipital encephalocele. This sac contained brain matter and the neurologist told us that the sac was leaking and would soon be a source of infection and eventual death.

Life-threatening surgery was the only alternative to try to save her life. Chances of survival from the surgery was less than 50%. Our choice was an easy one to make... we had to do whatever we could to save her life.

Not knowing if our baby would survive the surgery, we asked all our friends and relatives to come to the hospital to see our newborn.and to pray for her.

We had to let them know that their first visit with our baby may possibly be their last.

We were torn to pieces with emotions... we were so happy to have our first baby to love, but grief-stricken that she may soon leave us forever.

On the afternoon of Christmas Eve, our 2 day old baby was taken to the operating room for brain surgery to remove the encephalocele. After four excruciating hours of waiting and praying, we were told that our baby had survived the surgery - our own Christmas miracle!

Monica was named after my grandmother (on my father's side.) My grandmother took care of me for 2 1/2 years after my mother died from polycystic kidney disease (an hour after giving birth to me.)

It is hard to believe, but Monica is now 19 years old. She has rarely been sick and is physically strong, although not very coordinated because of the cerebral palsy. She likes to have help walking by holding someone's hand.

Monica's full grown height (4 ' 8") and weight (93 lbs.) for her age is well below average.

Monica does not sweat and does not have good control over her body temperature, so we have to keep her living environment temperature around 70 degrees. Her hands and feet are often either very warm or cold. We have also found that cold can trigger a serial tonic seizure. Monica eats mostly puree'd food, yogurt, and oatmeal, because she does not tolerate textures well. She has learned to hold a spoon and bring it into her mouth with food. We are still working on teaching her how to scoop food from a plate.

Monica has had generalized myoclonic seizures that are now under control with Lamictal and Depakote and Zonegran, with no noticeable side effects. She continues to have many partial complex seizures that disrupt her attention and functioning throughout the day, and we have found no medication to control them. She has many involuntary movements throughout the day, such as grimacing, teeth chattering, leg, torso, head and arm tremors. We are hoping that these can be minimized with Lamictal.

To the right is a picture of Monica and Dad. Monica learned to hug at age 4, and has been an avid hugger ever since. Every day, when daddy gets Monica out of bed in the morning, we give each other a nice big hug.

Monica is legally blind, but can see light, walls, and other objects, but her depth perception is poor. Monica will reach for an object that is still 2 feet away from her grasp. The Services for the Blind has been helpful in procuring special adaptive equipment for Monica to use at home and at school.

Monica is severely mentally retarded, with an estimated mental age of about 2 years of age. She current attends a special education class at RHAM High School. She also attends a music class where she listens to singing. Monica has always loved music ever since she was a baby.

Starting at age 2, Monica showed remarkable perseverance in trying to walk. Monica has cerebral palsy and does not have normal balance control, but after 5 years of constant daily effort, Monica learned to walk by age 7.

It is difficult for her to walk, taking a few steps forward and then a couple back to regain her balance, but she eventually gets to her destination. At home, besides occasionally walking, Monica uses a scooter board to navigate around in the kitchen floor.

Monica sleeps in a special "net" bed by Vail, so she cannot get out of bed at night. Monica recently surprised us by climbing into her net bed all by herself.

Since she was a baby, Monica's favorite bedtime companions are her Raggedy Ann dolls, that she holds all night (and sometimes uses as a pillow). Monica's long-time afternoon caregiver, Marguerite, recently gave her a large, stuffed, soft bear that Monica now often cuddles with at night.

Monica attends a public high school so she can be with and interact with the local school children and so they can get to know her. In Elementary School, one of Monica's special duties was is to pedal her tricycle from classroom to classroom picking up and then delivering attendance records to the Principal's office. She still uses that tricycle in high school, but more often now, uses a 4 wheeled walker to get to class.

All of Monica's activities at school are performed with one-on-one aides that stay with Monica throughout the school day. Besides the special education class, Monica receives occupational therapy, speech therapy and physical therapy at school.

Monica is a somewhat of a celebrity at school. She seems to be known by everyone. We have been told many times by teachers that she is a real asset to the school. Other children have learned about disabilities and not to fear other children that may be different in some way.

Often, when the family is out shopping, children will come up to Monica and say hi, or say to their parent "there's Monica" and they will come over to say hello to her. Monica cannot speak but sometimes she will wave hi or give you a hug. We so want Monica to be accepted by her peers and that is happening!

Monica's loves to use a computer both at home and at school. She is learning to use a mouse using software from RJCooper.

Some of hHer favorite learning toys are made by Vtech, who makes innovative and durable electronic learning toys for children. Monica enjoys activating and looking at the colorful flashing lights, voices, and music.

At age 12, Monica learned to eat a peanut butter and jelly sandwiches that are cut up into pieces, picking up the pieces from a plate and putting them in her mouth by herself sometimes. She still does not chew with her teeth, but uses her tongue to compress the food against the roof of her mouth. When she is being fed, she is learning to gently clap her hands once or twice to indicate she wants more food. Sometimes we have to "cue" her to clap her hands by saying the word "more" or "Do you want more to eat ?" Sometimes she taps her chest with her thumb to indicate that she "likes" something or wants more.

By age 15, with persistent effort from one of her longtime afternoon aides (and one of Monica's BEST friends) Marguerite, Monica is learning sign language. Monica has learned to nod her head "yes", wave "hi", tap her chest to indicate she wants "more", wave her hand and tap her forehead to sign "hi dad". She also knows the sign for "shower", which is one of her favorite activities.

With occasional assistance, Monica can now scoop from a plate with her spoon and bring it to her mouth. She has learned to sip with a flexible straw from a cup that has a lid, enjoying orange juice in the morning and chocolate milk with lunch.

Monica enjoys drawing colorful lines with dry erase colored markers (listening intently as they squeak) on a white board, using a scooter board to navigate around the kitchen and to look at her books on shelves in the corner of the kitchen.

Monica has her own chair in the living room, a low to the ground, bucket seat of fabric. She also has a big pink bean bag with her name on it to lie on with an afghan that she sometimes puts over her head.

December 19, 2001 Monica underwent a 7 hour spinal fusion operation to straighten her back that was curved to a 40 degree angle from scoliosis.

Here is a picture of Martha, Monica, Mom, Santa and Dad at the hospital where Monica is recovering from a spinal fusion. Monica got a surprise visit from Santa in her hospital room

Monica did not complain from the pain after the surgery, but we gave her pain medication for the next two weeks. Louise slept in Monica's hospital room for the next several days and dad relieved her on the weekend.

Much to our delight, Monica started to regain her appetite on the third day after the surgery.

Several days after the surgery, a physical therapist and dad started to help Monica to stand and walk the hospital corridor with a walker. It was now apparent to us that it would be a struggle for Monica to learn how to walk again. But Monica was more than willing to get out of bed and try.

Monica was allowed to come home early - the day before Christmas Eve. We were so happy to have Monica back home so we could spend Christmas together at home.

At 18, we now have to pursue legal guardianship for Monica. We contacted the probate court and filled out the paperwork. A few months after that, we had a knock at our door and it was a court-appointed attorney for Monica! We were so surprised! It was a nice visit and the attorney met Monica and the family and got the appropriate information in preparation for the guardianship hearing.

The picture on the left shows Martha teaching Monica how to play the drums.

Martha is a talented musician who has her own band and sings, plays drums and guitar and writes her own music. Monica enjoyed hitting the cymbals and listening to their sound. Besides the drum set, Monica seeks out sounds throughout her day, often trying to get objects to make sounds by rubbing them against her left ear or dropping them.

By age 18, Monica is no longer tactically defensive. She now seeks out other people's hands and enjoys holding hands for hours at a time while cuddling on the sofa before bedtime. If she can hold both your hands, so much the better. This is quite a change from infant Monica that did not want to have her hands touched at all.

Please view a beautiful quilt that was lovingly made for Monica at Smilequilts (creators of virtual online quilts for children with terminal or life long illnesses) by Toto (Toto's Graphics), Sprite (Sprite's Graphics) and others. Thank you!

Check out the ezine article about our family in the June issue of Daniel's gift

Beside being my teacher, Monica was also my inspiration for becoming an occupational therapist.

The picture to the left is Monica (dressed as a wizard) and mom and dad at the Renaissance Faire in CT 2007. Monica was somewhat interested in the sounds of the faire. She spent 4 hours in her portable wheelchair and did not complain at all. The faire is held for several weekends at the Hebron Lions Club fairgrounds, site of the annual Hebron Harvest Fair - one of the largest agricultural fairs in Connecticut. My other, very talented daughter Martha was the queen of the Hebron Harvest Fair in 2007.

Below are pictures from Monica's "special" high school graduation ceremony. During the rehearsal for the entire graduating class's graduation ceremony, the principal (blue shirt) and the directory of special education (black suit) had a special graduation ceremony just for Monica. The principal introduced Monica and spoke about her accomplishments over the last 4 years. He congratulated her and gave her the high school diploma. Monica received a resounding and wonderful round of applause from her classmates - the entire graduating class. It brought tears to my eyes.

What a proud day for Monica and I! Monica left the stage carrying her own diploma! The aid on the right in this picture has been helping Monica in school for the past 6 years. Monica and I have been blessed to have her helping Monica get through school day by day.

Monica will attend high school for one "post-graduate" year (she remains in public school through the year that she turns 21) and then she will probably attend a day program. I am currently looking at local day programs trying to find the "right" one to meet her needs.

Here are the latest pictures, courtesy of Marguerite - one of Monica's primary caregivers:

Monica coloring

Monica listening to a story from TJ Beary

Monica learning to brush her teeth in front of a mirror at the sink