I marvelled at the all-consuming regimen required by the parents of those children, not only to enable them to survive, but to enkindle in them unquenchable spirits, and seemingly unlimited light and passion. Little did I know that the threads of their journeys would be woven into the fabric of my own story.

The year 2001 was a dark one for me. My first daughter, Sarah, was stillborn. Then, within a month, the horrific attack on the Twin Towers occurred in New York City.

I found some relief for my anguish with the lies that perhaps my child was better off not having lived, and that I was spared the responsibility of raising a child in such an evil world from which I could not protect her.

The truth was that something in my heart was clouding my view of all that was beautiful and true in life.

Two months later, I discovered that I was expecting my second child. Then, mid-way through this pregnancy, an ultrasound showed that the baby had a severe disability. Words like "spina bifida" and "hydrocephalus" sounded foreign and ominous.

Even if she made it to her birth, the doctor said, this baby would be paralyzed from her ribs to her toes and, due to extensive nerve damage, she would be incontinent and have many other medical issues related to her condition. If she lived, what kind of life would we have?

As it turned out, the baby, whom we named Meagan, lived and had all the disabilities predicted.

I thank God for the two years I spent as an applicant with Madonna House in the early 1990’s. It felt like God’s boot camp, but it prepared me for the rigorous life of raising a child with a severe disability.

Instead of my being a missionary of love attending to the needs of people some place far away, the rhythm of my days now follows Meagan’s needs.

If she sleeps through the night, which does not always happen, our day begins at 6 a.m. when I begin to get her ready for school.

It took a couple years of her attending preschool for me to develop a routine that works for us, but now that Meagan is in grade one, we have a smooth morning together until she takes a wheelchair-accessible taxi-van to school shortly after 8 a.m.

Since Meagan is only six and her paralysis extends from the waist down, she still requires help with many things including toileting, bathing, and dressing.

Eventually, however, she will have the strength and the capability to care for her own needs. Already there are many things she has learned and developed confidence in doing, and she is gradually learning to be independent, as well as interdependent.

I do not see Meagan as disabled, but rather I see my challenge as creating an environment in which she can succeed and teaching her to discover and use her gifts and talents.

This means employing an approach of tough love and gently pushing her to live up to her potential.

It became obvious to me from all the books I read that the challenge of a disability is not primarily the lack of bodily or cognitive function, but our attitude towards it. The common thread in all those stories about the human spirit triumphing over adversity was that each person overcame his or her inner limitations.

How do I help Meagan achieve this in her life? There is no manual. But I believe that God gives each of us what we need to live the life we have. And we all have talents and gifts, as well as other people and situations to help us.

I have a sense that it was God’s guidance which led me to read the stories I read so many years ago. Though none of them could give me the answer for my life, each held a key to living life to my potential and teaching Meagan to do the same.

Meagan has just grown out of her second wheelchair. Her next model will be lighter and faster, for she now has to travel from one end of her school to the other twice daily to use the washroom.

Meagan chose the color of her new chair ("Razzleberry") and asked for an extra set of wheels for the front, which will light up when she rolls. She will use these when she dances and pops "wheelies" in her chair for the weekly talent show at a nearby summer camp called Waupoos Family Farm.

Waupoos has become one of our favourite places. We camped in a wheelchair-accessible cottage there for the past three summers. It is located twenty minutes from our home, which is very handy since Meagan and I have to make three trips with our van in order to bring the necessary equipment even for our one-week stay.

During the year, we also spend Saturdays at Waupoos. Their motto is "pray, work, play," and that has brought balance to our lives which at times leaned more heavily on the pray and work parts.

Meagan is very active, like most six-year-olds. Last year she played sledge hockey and enjoyed picking her way across the ice with her sticks and shooting the puck into the net. This year she has asked to learn to play piano.

She has always enjoyed music, and I have exposed her to a wide variety of styles. She practices with percussion instruments at home and has developed a great sense of timing and rhythm.

One Advent, about three years ago, I took her to hear Handel’s Messiah. Several of us were moved to tears when, at the beginning of the Halleluia Chorus, Meagan threw her head back and raised her arms in an act of spontaneous worship.

Meagan has to have regular medical procedures including needles through which she receives intravenous medicine.

This has become very unpleasant for her because her veins are difficult to locate. I had been praying to find ways to help her endure these times.

Earlier this month, while I was at a retreat, the speaker talked about "offering up" pain, tiredness, frustration, etc. I left with a renewed awareness of God’s transforming power in all of our lives, adults and children alike.

Later, I told Meagan that I had learned something for myself and for her during my retreat. I told her that each time she felt something painful, sad, or difficult, she could give it to Jesus and with it, he could bless someone else.

I told her that some children at the hospital are in pain every day and that there are others who have to have needles more often than she does. She seemed to hear what I was saying, but the subject changed and we began getting ready for bed.

That night as I brushed her teeth, a loose bottom tooth began to bleed. Screeching that it was about to fall out, she alternated between asking me to help her take it out and pulling away and protecting it with her bedspread.

I went to get a cloth to gently pull it out, when suddenly I heard her say, "Mom, for the kids at C.H.E.O. (the children’s hospital)."

When I asked her what she meant, she said, "I want to give my nervousness about my tooth bleeding and coming out for the kids at C.H.E.O to get a blessing from God."

What a beautiful journey Meagan and I are on!