She has been an inspiration and a heart thief from birth. Everyone that meets her falls in love with her. When she was born we were shocked to find out that she had spina bifida and within 8 hours of her birth was flown down to BC Children's hospital. I had to wait til the following morning to follow her down. Before I had even seen her I was approached by one of her doctors and was told how they needed consent to do surgery to close up the hole in her back otherwise she could die from infection, it was one of the scariest moments of my life.
We soon were told that apart from her obvious leg malformations she also had a single horseshoe kidney, small high pressure bladder, and she had a hernia on her right side.
After Janice was born and a month long stay in BC Children's hospital we returned to our home in the interior. Our two bedroom apartment became a wonderful home for our small 4 member family; Kevin, Janice, Lia (our cat) and I. Although annual visits to Vancouver for Janice every three to four months made our budget a bit short. Eventually working fast-food and taking time off for medical appointments caused us to make a big decision, November 2010 we had to move in with my grandparents.
She did not like any of the traditional mobility devices brought in by her physio. I found a child size skateboard that we had modified for her. She loved racing around on it. We had to put a g-tube in October 2010 and developed a bed sore on her back from being on her back after the surgery. We finally just got the bed sore cleared up.
Another problem that arose was I seemed unable to set up any play dates for Janice which made me have to consider daycare even though we didn't need the additional care, no it was for social skills for Janice. She fell in love with daycare and made many friends. Her language skills also grew with the interaction with the other children in her day care. So with the help of my grandparents and day care 2 days a week, I was able to work a flexible schedule and Janice was flourishing.
November 2011 I got a Christmas job working as a cashier at a retail outlet. I enjoyed the environment and climate way better than the job I took due to lack of options after maternity leave. The job I was working at when I got pregnant closed down, and my EI got eaten up with maternity leave I had to take the first thing that came my way which was fast food. However after some issues with management and their reaction to some complications with my daughter I was ecstatic to move on to another job that was more understanding and had more reliable hours.
I was extremely happy when informed that they were keeping me permanently. So that just left the matter of getting some savings and a properly designed home for Janice to grow up in;
In February 2012 we had another trip to Vancouver to see an endocrinologist about Janice's hormone levels. She is on the small side for her age and after over a year of being hounded about her weight they tested her hormone levels only to find that some were on the low side and thus our up coming trip.
It was a typical appointment, they weighed and measured her, took her blood pressure, all the usual. Dr. Dan (Metzger) found the dispute one hormone being low, but in range and her length (arm span) matched her weight; which means she is growing just fine, just at a little slow but at her own rate.
While at the appointment it came up about how because of the additional water I must have been huge. It was during this discussion that my mom mentioned that I had been bigger than she had expected even with me being diabetic and she had added that I had even been bigger than a woman carrying triplets. This discussion makes me feel like I should have done something more. I got so big so fast and there were several times I thought something was off and let people talk me into comfort. My even more clumsiness, most likely due to the additional fluid. The fact that everyone kept thinking it was multiples. Was I a bad mom for missing it? Should I have done something differently?Since then I have been feeling inadequate.
April 2012 Janice finally took to a mobility device a wheelchair which unfortunately was a loaner and we only had for a few days. She loved it though and figured it out very quickly. Janice was very sad when we had to give it back and wait for them to order her one which she would only get for a month or two.
2012 it felt like we were constantly down at Children's hospital. In May Janice started attempting to use the potty and succeeded a few times, even though I was told not to get my hopes up because due to her condition she would probably always need some form of diapering.
July 2012 we moved out of my grandparents and into a new apartment that worked perfect for Janice carpets only in the bedrooms and it was flat carpet so she could use her board and wheel chair with not too much difficulty.
Janice normally got a cough in the fall and spring and tended to end up in the hospital for a week each time. But she always beat it and came home. Christmas 2012 Janice had a little cough but not a hospital trip one. Christmas Eve we headed to the in-law's as normal and she was happy and playful and you wouldn't think anything was wrong. Christmas Day all she wanted to do was sleep which I thought had to do with her late night and all the excitement with her cousins. We came home , we dropped Janice off at my grandparents as we both had to work early shifts. My grandma told me she started guzzling her formula, as she hadn't eaten all day it made sense. The day she passed she was still lethargic and had two bouts of diarrhea. At about 1-130pm my grandmother called and said we should take Janice to the hospital because her lips were going blue. Her father had just picked up the car and before he got her the 15-20 minutes to the hospital Janice was unresponsive. The hospital tried for half an hour to revive her before calling me at 230pm.
They ruled Janice's passing as natural causes due to her unique anatomy due to her condition. They think an infection got in her system and it was too much. I am told she didn't suffer but the end result is still the same.
Now 11 months later I am 7 months pregnant with her sibling and still mourning Janice and wishing she was here.
My bright little Angel flew to heaven on December 26, 2012. Janice was my light and reason for being, she could make anyone smile just by smiling at them. Although she had physical limitations from birth you wouldn't have known it from her determination. She was a smart and beautiful girl that had a spirit that I have yet to find an equal. Janice never let anything stop her. Janice loved her Care Bears and Cat in the Hat. Her spirit was as pure on the day she left as it was the day she entered.
Janice was my Borrowed Angel and my Blessing. I felt so proud to be her mother, to just know her. She inspired so many and her light will shine forever. I just wish I could have one more kiss, hear her voice one more time, have one more hug, hold her just one more time; I would trade anything to have her back.
I haven't dreamed much since I lost my angel but when I do it is of her. I feel so lost without her. How do people go on after such a devastating thing as loosing a child so young and full of life. For her to go from being so full of life and happiness as she was on Christmas Eve to the form I held Boxing Day afternoon seems like an impossibility. It makes no sense.
My tears come in spurts and all I want to do is hold Grumpy, her favorite bear. Her daddy gave it to her but mommy is the one that bought it. She didn't go many places without him and I guess I feel if I have Grumpy then she is close by, don't know how much sense I am making.
Miss you Monkey. Mommy and Daddy love you so much.
IN MEMORY OF JANICE MARGARET DESTINY-ANN
SEPTEMBER 15 2009 - DECEMBER 26 2012
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