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Francine has taught me lessons about life that surpass what I have learned in a classroom.
Francine Crossley, Trisomy 18, 5/21/1997, Toronto, Ont, Canada
Reflections on life with Francine
By Adela Crossley, November 2009
I think that when a family first learns of their child’s disability, inevitably the family goes through a grieving process-it mourns the loss of the child it had visualized. This kind of grief is often alienating for the family, as the child is alive, yet it mourns the death of dreams and plans for the new baby. I wish to share my own experiences of mourning (I call this period “the dark days”), and what helped me to emerge and rejoice in the sunlight again.
Finding out about Francine’s disability:
As I sat playing with Francine during the Christmas break, I reflected mentally on how far we have progressed as a family since we were blessed with her. During the early days of her birth when we were attempting to come to terms with the bleak prognosis delivered by her doctors, we went through a myriad of emotions. I still recall the sense of powerlessness that pervaded my days and manifested itself in expressions of despair, self-pity and apathy. For a period of time I went about my daily activities thinking that Francine’s demise was imminent. During a telephone conversation with my sister I confided to her that I felt a strong sense of hopelessness and loss of control over the situation, since I had no control over the fact that Francine was terminally ill. My identity as a mother was undermined, since I felt that a mother was supposed to nurture her child, and here was I in a situation where all of the doctors were saying that Francine was going to die and there was no cure, nothing that I could possibly do. My sister told me that while I had no control over Francine’s disability, I still had control over how I reacted to the disability. This was a revelation to me, and looking back now, I think that it was the best advice that anyone gave me during those dark days. My life as I knew it was over, and I had to create a new identity for myself, one that took into account my new status as the parent of a disabled child. I was reluctant-and sometimes resentful-to give up on all of my dreams for Francine, but I was enough of a realist to know that Fran was not going to wake up one day and stop being disabled. I had to come to terms, and make peace with her condition. I told myself that my dreams were not her dreams, and it was not fair to impose them on her.
Accepting the disability:
People cope with unsettling news in their own way, and their approach is dictated by their personality, background, environment, etc. I think that my coping mechanism has been educating myself about Francine’s disability, and ensuring that she has the best care that I can provide for her. Since I did not believe that Fran would make it to her first birthday, we bought a cake each month, and celebrated her “month day”. We would have candles, and the cake would read “happy 2nd month”, etc. When she did make it to her first birthday, we rented a hall and invited over 100 family members and friends. It was truly a celebration of life, faith and hope. My life has changed in so many immeasurable ways because of Francine. She opened my eyes to a whole different world, and changed me forever in the process. I became a lawyer interested in human rights and disability issues because of my experiences of advocating for her. My priorities have shifted and my values have evolved. I would like to think that I am a much better person, because of these changes. Francine has taught me lessons about life that surpass what I have learned in a classroom. My husband John and I have both devoted our time and energy in caring for Francine, and enjoying her. I know that I am heavily biased but I consider Fran to be one of the most remarkable individuals that I have ever met. I am both honored and grateful that I have been blessed with her, and that I can offer her the unconditional love and support that she needs. Disabled children invariably need a lot of care that translates into a lot of work, but it is so important to take the time to get to know them as individuals. They bring with them a level of honesty and pure joy that can be overlooked if one is too tired or busy to spend quality time with them. They can teach us much if we would listen with our eyes and hearts: compassion, strength, patience, courage, unconditional love and humility. I look at Fran and I see how much she struggles to achieve small goals, and I am inspired to work harder at achieving my goals. One of the best parts of my day is sitting with her at nights in her rocking chair, and singing nursery rhymes to her. She snuggles up to me, and sucks her tongue and looks at me. When I am done singing, we look at each other and there is no need for words. We understand each other in an uncomplicated way, and for us, that is good enough.
By John Crossley May 2013
I can’t remember when we first contacted SOFT, but I do remember talking with Barb VanHerreweghe on the phone and us both being surprised at the coincidence that our daughters shared the same birth date although 16 years apart. I remember that we sent a couple of letters that were published in the newsletter and I believe my mother also submitted a letter. We drifted away as our lives became a little too busy.
It has been sixteen years since Francine was born and four since Adela wrote the above article. While many things have changed during that sixteen years, our pride and amazement with Francine and her accomplishments has not. As Barb has written about Stacy, Francine is not the “typical” Full Trisomy 18 child. While she shares many of the same characteristics, her health has been incredibly good. She has not been hospitalized since the first year or two. She’s given us many a scare and sleepless night when ill, but she has continued to grow in strength.
Today Francine is about 4 ft tall and weighs about 64 lbs – she’s on a diet to lose a little weight. She’s able to sit on her own, determine which buttons to push to get the music she wants from a toy, drinks and eats (pureed food) from a spoon (mind you the spoon is managed by a caregiver), will put herself into the four point position and experiment with crawling. She unfastens her wheelchair safety belt and shows great excitement when she’s done so. She rides a tricycle, lifts her legs for a diaper change, and her arms for to have her shirt removed. She will also attempt to help with the diaper, something we rather she did not do. She seems to dislike socks and constantly removes them. She’ll put her arms into the sleeves of shirts but will try to avoid putting on a coat. She hates anything placed on her head and will work diligently to remove it. She is amazed by fingers and toes (anyones) and will examine them with a great deal of concentration for long periods. She loves to be tickled and have pillow fights (which she will initiate both) but is also content to amuse herself. She will defend herself with what seems like eight arms and legs when you try do so something she doesn’t like or when she wants something that has caught her attention. She watches TV and finds sweeping the floor to be extremely amusing. She can’t stand wheelchair vans with a ramp at the back and will complain for the duration of the trip – she much prefers vans with a side lift and makes no fuss. She has been camping and seems to enjoy it, but she is not fond of long drives or of the sun which she shuns like a vampire. She is very social and enjoys a trip to the mall or some exhibition. She is very curious. She loves to unwrap presents, but discards the contents preferring the paper or boxes instead. She also likes to grab the purses and bags of other patrons to see what they have found interesting enough to carry. She fears the doctor and his needles and lets the world know it. She’s not too fond of the dentist and will hiss at him. She loves to pull the long hair of her sister, much to Emma’s dismay.
Francine is far from the vegetable that we were originally told to expect. I think she heard the “experts” and decided to do something about it.
Adela started her own law firm in 2008. We shared the duties of getting children on school buses and being home with they were ill. However, as the firm grew, demands upon Adela’s time grew as well. We made the decision that I would become a stay at home parent, which we accomplished at the end of April 2011. I have NEVER been busier! I have only recently begun to feel that I am getting some control over my new role.