This is the ongoing story of my first-born daughter, Monica - her birth, development, struggles, joys, and strong determination to learn, participate, communicate and explore.

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

Monica has rarely been sick and is physically strong, although not very coordinated because of the cerebral palsy. She likes to hold hands and cuddle. She walks with someone holding her hand.

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, because she does not chew and 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 multiple medications, with no noticeable side effects. She continues to have some partial complex seizures that occasionally disrupt her attention and functioning throughout the day. These partial complex seizures demonstrate as grimacing, teeth chattering, leg, torso, head and arm tremors and stiffening.

Here is a picture of Monica and Dad. Monica learned to hug at age 4, and has been an avid hugger ever since. Every morning, when dad gets Monica out of bed, 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. She rarely notices anything below knee height.

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 or a 4 wheeled walker to navigate around.

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

Monica current attends an Easter Seals day program.

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 now uses her own tricycle at day program.

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

Monica was well known at school. We were told many times by teachers that she is a real asset to the classroom. Other children have learned about disabilities and not to fear other children that may be different.

Often, when the family is out shopping, children will come up to Monica and say "hi", or say to their parent "there's Monica." They will come over to say hello to her. Monica cannot speak but sometimes she will wave "hi" or give you a hug. We wanted 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.

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 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 "bed" and "shower", which is one of her favorite activities. Monica loves water.

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. She uses a scooter board to navigate around the kitchen and a 4 wheeled walker to walk around the house.

Monica has her own chair in the living room, a low to the ground, bucket seat of fabric. During mealtime, she sits in a Trip Trap chair in the kitchen.

On 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 get 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 went to probate court for legal guardianship for Monica. 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.

Martha is a talented musician who has her own band and sings, plays drums and guitar and writes her own music. The picture on the left shows Martha teaching Monica how to play the drums. Monica enjoyed hitting the cymbals and listening to their sound.

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 was 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.

Here 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 attended high school for one "post-graduate" year (she can stay in public school through the year that she turns 21). Now she attends an Easter Seals day program.

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