Let me introduce you to Anne-Véronique
playing a game of wheelchair basketball (or mini-basketball) shown for
the first time during the Quebec Games held in Blainville.
Let us go back to Thursday, December
22, 1994, at 4 p.m. when I received a call at work from Diane, my wife.
In the grip of emotion, she told me about the phone conversation she
had had a few minutes earlier with Youth Protection Services who were
in the process of finding a foster family for a 5-week-old baby.
After waiting more than five years, we
received an answer conditional to a positive reply… within one hour. A
few phone calls later and a wait until tomorrow Friday afternoon around
two o'clock (it goes without saying that I did not go to work because
after all... we were expecting a baby), the social workers came holding
a baby in their arms. After the formal introductions, they asked us
whether we still wanted the baby or they would take her back with them
because, after all, the baby cries all the time and always needs to be
held. We also learned that the baby was born with clubfeet. Our answer:
The baby is here and she is not leaving (all this said with an
unequivocal tone of voice).
Merry Christmas and Happy New Year.
After the holiday season, we took the
necessary steps to have the baby treated. Curiously, she stopped crying
With the required permissions, visits
to the three different children's hospitals followed one after the
other for more than two years. Though it became our routine, we did not
encounter major inconveniences.
the day came when the orthopedist expressed concern about
Anne-Véronique. So began what we could not have imagined at that time.
We were sent to the genetics department of the Montreal Children's
Hospital where we were told that Anne-Véronique lacked a major enzyme
which defined her since birth as a little person. She was suffering
from Morquio's syndrome. What is…? How...? What do we do? The only
consolation was that they put us in contact with a couple with children
of their own suffering from Morquio's syndrome. Subsequently, the
couple put us in contact with the AQPPT who in turn gave us support
throughout the process of discovery and learning about the disease of
the child who legally became our daughter about a year ago. The
telethones, news reports, and hospital visits filled our lives without
answering our questions. The only answer we had was the one I had given
during an interview to a reporter from the Journal de Montréal, which
comes to mind after so many years: We do not make any plans, we live
from day to day. Today I would like to say this: Can we make plans when
not only we do not know what tomorrow will bring but even what today
Things took a new turn when
Anne-Véronique, who was 4 years old (1998), had to undergo an
unavoidable operation to fuse the two vertebrae C1-C2 to avoid
paralysis. This operation resulted in a stay of several weeks at the
hospital. If this hospital stay seemed to suit her fine, it was not the
same for the parents. Mom stayed there and went through the
inconvenience that this entailed (crowded places, discomfort, sleep
disturbed by the nursing routine, etc.). I could not, however, bring
myself to watch this operation using as an excuse that I had to go to
work. However, I was surprised to see her sitting up in bed, laughing
in spite of a long surgery and a body cast. A child has unsuspected
resources that are sure to impress those around her (even her father).
A few months had hardly gone by when she had to undergo an emergency
operation to remove the flesh-eating bacteria she had developed at the
back of her neck. Following this, she had to wear a hoop attached to
her head and waist for about six months.
At age 6, after a break of several
months and a trip to Walt Disney organized by Children's Wish, she had
another operation on her hips and back.
At 8, a new operation was necessary to
correct a weakness in her legs.
Since that time, Anne-Véronique has
been in a stable condition, although her frequent headaches, nausea,
and vomiting leave us puzzled. At age 14, having my heart set on
helping her to excel, I started looking for an activity that would
please her (Nintendo, Game Boy together with computer games forced me
to do it). And here we go again, this time with music and basketball to
which we just added swimming, and we are already talking about a swim
meet... A father out of breath is asking for a break because through it
all, Diane and I are also facing the weight of passing years with its
share of sickness, operations, discouragement, and small joys. However,
I am called upon to improve her daily life at school, particularly
through the advisory committee for students with disabilities and
students with social and learning maladjustments of the Commission
scolaire de la Seigneurie-des-Mille-Îles, and her everyday life (did we
not participate in the Quebec Games, the provincial tournament and
finally, last May, in the Sports Challenge, which earned the team a
bronze medal in addition to beating the competing top teams in the
(I have already said it... I need a
Let me share with you a little secret:
following the win at the Sports Challenge, a private team meeting was
held during which players were invited to share their impressions on
what they experienced during the year just ending. Two players
spontaneously praised Anne-Véronique's contribution to the team through
her enthusiasm and desire to play. The coach then shared his joy for
the work performed by Anne-Véronique despite her little experience. I
think it is important to tell you that she began playing only two
weeks, or rather two Sundays, before the Quebec Games started, during
which she refused to abandon despite a state of apparent exhaustion. I
could see at that time a young girl's (my daughter's) face covered with
a smile and pride and a father's heart tighten up… sorry, I have a
speck of dust in my eye.
Claude L., june 2009