Testimonies

 
 
 
News > Dwarfism > People with Dwarfism > Testimonies > Claude L.
 

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.

Oh, yes!

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 afterwards.

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.

But 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 will bring?

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 first round?)

(I have already said it... I need a break).

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.

Sincerely

Claude L., june 2009

 

 
 

© 2011 AQPPT - Translated by George Bravo and Judy Murphy