Janice Story 2009-2012

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 determiniation. 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 devestating 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.

Sometimes

Sometimes
© Colleen Ranney
Sometimes I catch a glimpse,
In softened waves of blue
My child, my heart …when I see a smile
I can’t help but think of you

Sometimes these waves fill oceans.
And feelings string on every shore
A collections of each memory
And every way I wish for more

Sometimes I watch for answers
Because each day I call to you
I ask for faith and courage
And strength …to help me through

Sometimes I ask for bravery
Like dolphins in the deep
Because time moves oh so slowly
And some times the road is steep

Sometimes I want to scream
This was not what I had planned
Why you ever suffered
A mom can’t understand

Sometimes I hear your laughter
And remember you at play
But My Child I always miss you
Not sometimes, but everyday

My Baby's Life

My baby girl was born on September 15 2009 and left to be in heaven December 26 2012. I had 3 wonderful, amazing years and 4 Christmas' with my angel. She was smart and happy and beautiful. I always joked Kevin would need those swords of his in a few years to keep the boys at bay.  She was adventurous and just plain loved life. She was my reason to get up in the morning.

It was so sudden and shocking. She was fine that morning and gone by afternoon. I still keep thinking she will come rolling out of her room calling "mom" and asking for her "bears".

Everyone keeps asking what they can do for us and I don't even know how to get up in the morning let alone what I need.

Janice Margaret Destiny-Ann was my beautiful baby that left this world too soon. She had a contagious smile and made everyone smile. She touched everyone's heart she met and will always be my angel.

Mommy misses you sweetie. You were our monkey and always will live in our hearts.

been a while

I guess it has been a while since I posted on here, not that I think many people read but more an issue of time and things to blog about. 

Since my last blog, Janice turned 3 which we spent her birthday in Vernon as we normally do for the September birthdays on Kevin's side of the family. I turned 28 which was as normal around Thanksgiving. We did the two suppers thing but this year Kevin's sister Laura was in town and it was decided that we were doing a October birthday special in Vernon which was nice. 

Mostly it has been allot of work and family stuff. Janice has her wheelchair which she will be growing out of fairly quickly I think. Although Vancouver still harps about vitamin D and weight I think we have made progress, she is taking dissoluble vitamin D pills daily and Kamloops doctors seem to be happy with her weight but as normal I will keep monitoring it and hope Vancouver might actually be happy next visit.

We were down in Vancouver at the beginning of September and the only things they would say were "she needs vitamin D" and "She weighs the same as she did in June" I know they are good people but sometimes they irritate me. They wanted us down again for November 29th but after talking to her pediatrician and the nurse clinician I have staved that off as I can't afford to take the time off during the blackout period with Christmas coming nor do I want to transverse the  Coquihalla highway in November/December.

Janice has a cough again. She seems to get them 2-5 times a year. At least now with the inhalors we don't end up in the hospital each time. I don't like hearing her cough but at least she is home and comfortable with her toys and "Bears". My angel loves the Care Bears that seems to be all she wants to watch these days. We have been doing good, no tube feed since June; OK that is a lie she has had 2-3 since June but it is mainly now when she is sick that she gets them and that is because she isn't eating much. 

On that note I will turn off the computer for now and will hopefully post again soon with not so long of a gap. But I also have to post christmas lists and finish Christmas shopping as we have 3 more gifts to buy as my niece and nephews are coming down for the first Christmas since they were born. It should be a good holiday.

Feeling sorry for myself

I know this is petty but I can't help myself. Why can everyone else have perfect, healthy babies when mine can't walk and has other things wrong with her? I know it has been almost three years but I still seem to get constant reminders of all the things that she will never be able to do. I end up grieving all over again for the things she will miss out on while I watch everyone else have children with no issues that can take dance and play any sport they want. I see people chasing after their little ones and I laugh but inside I miss that there isn't going to be much if any of that for me. Sure she has her board and eventually her chair but she can't go that fast with either of them. I will never be able to teach her how to skate or play baseball. I know there are alot of advances in things that people can do from chairs but that doesn't mean they can do everything a person with use of their legs can. 

A lot of the people that had kids the same time as Janice was born are on seconds and I can't because I have too many other concerns with Janice and financial issues to be able to even consider giving her a sibling. People say I am strong and they don't know how I dealt with and continue to deal with Janice's medical chart as it were and there are days I don't even know. 

She is my angel and just seeing her makes me smile but there is so much more I wish she could experience and do and it makes me sad.  Janice has the best out look on life I could have wished for her but is that going to last her all of her life?? I wish I knew.

Update: new place

Well we are loving our new place and everyone seems to be impressed when they see it. Janice is happy with her room and the balcony although she has dropped 3 things off the edge. The floor is quickly dirtied but just as quickly cleaned. I love being able to do laundry on my time table and not having to worry about totting Janice up and down stairs. I can do it while she is playing or watching tv or her trying to help me lol. It is cute she keeps wanting to "help".

Slowly finding a home for everything. Still a few things that I want to pick up to make things look better and give a home to some books and other nick knacks. The landlords are great the few things that needed fixing have been looked into. The top shelf for the fridge we got on the weekend; the shower and carpets have been checked. They are very good at getting to things in a timely fashion.

Again the location is beautiful, walking distance to everything from shopping to restaurants to daycare to pool to transit to parks to family. Janice will be moving rooms in September as well as aging out of Infant Developement. We also have alot of things coming up in September and not just birthdays.

Janice seems to enjoy "helping", bubbles, play dough, finger painting, and flipping through books. I wouldn't put it past her to be reading but she hasn't given me any signs of that. She is so independent and confident, she is always surprising me. Although she still only has about 2 friends and 5 cousins that she gets to do stuff with she is still a happy and smart angel.

Lesson learned make sure Janice's board is moved away from the balcony door before entering, especially when I am caring her. I stepped on it and did the splits; Janice is perfectly fine not even a bump but mommy twisted her knee and bruised her shin.

New Home

This Sunday Kevin, Janice and I moved into our new home in library square. We were further surprised by the view we got of the Kamloops Canada Day fireworks.  With the help of four friends and an aunt we got everything but the small stuff from my grandparent's basement moved in one day. We only have about four boxes left to unpack. 

Unfortunately the move was followed by my loosing my voice. I saw the doctor today he said it was nothing serious just needs some time to let the swelling around the vocal cords go down. 

It is such a nice place and we are so happy. Everyone is commenting on our nice big bedroom plus en-suite. The en-suite has shower, separate tub, toilet and sink it is a deep soaker tub and the way we have the bedroom set up you can watch t.v. while you soak. Janice has a good size room there is lots of closet space throughout. High Efficiency front loading washer and dryer included and all appliances stainless steel from microwave, dishwasher, fridge, and stove.  We also have the den set up as an office space. I think we will be really happy hear.

Current situation

I am feeling pretty stressed right now with the daunting task of moving July 1st. There is also my grandma's continued views on my relationship as well as other things. I understand that she only wants to help but sometimes I find her a little crushing. The other day she made it sound like there was a chance that Janice might get hurt by a relative because they got a little impatient with her while trying to put on her skate gloves. I really don't need any additional stress.

Work is going great I am getting a nice amount of shifts and my numbers are good so I have no complaints there. Waiting on letters about Janice to send in with a rent subsidy request for our new place. It would be tight without help but do able, so I really hope that there aren't any hiccups with the subsidy request like there is with Janice's daycare subsidy.

Janice is three months behind on our daycare subsidy due to government bullshit. Apparently they updated 30 year old systems and are now taking unbearably long time to process applications and renewals, so much to the point where some daycares are closing because they can't afford to wait for the money. It is rediculous.

http://www.kamloopsnews.ca/article/20120601/KAMLOOPS0101/120609970/0/kamloops/slow-govt-subsidy-payments-frustrate-day-cares

My one day off in five and I am sitting here writing a blog about my current stressors. I wish I had someone I could talk to. I feel very much alone recently and the situations are not helping. Family are pushing me to buy instead of rent when I don't even know what we need for Janice in a house. I personally feel I am doing the right thing in waiting at least another year so that we can better assess Janice's needs in a home before buying. Also we have no down payment. I know they are just trying to help but sometimes help can be a hindrance. I wish I knew what to do. But I guess this is life and I will keep plugging along doing the best I can.

Lots on the mind

There is another going on but some of it isn't my place to say anything about. There is some good and some bad, mostly just to much on my mind. Between the happiness at Janice going on the potty to mom's news. Then there was the news from Van (that I talked about last time). My brain feels overloaded.

We are also trying to get out on our own again. There is a really nice place we are looking into. Plus we are still waiting on Janice's chair. 

Urology Testing at BCCH

I always find the trips to Vancouver Children’s hospital exhausting, especially when I have to be at the hospital for 630am. Janice has been fasting since midnight and she knows where we are, I try to keep her distracted but not always an easy task with nurses coming in and out of the room. Then she wants me to hold her as the nurses surround her to put in her iv and give her the anesthesia. She falls asleep almost instantly but I don’t want to leave as her cries still echo in my ears.

The first procedure went well although the doctor commented that her “anatomy is unique down there”; the doctors seem to love using that word with her “Unique”.  She is in recovery now and then she has another test this afternoon which they hope will shine some light on what is going with her bladder, kidney, and the rest of that region.

I feel anxious as I wait for her to wake. The doctor just came and gave us some baffling information: apparently they are still not sure if she has one kidney or a conjoined kidney; but they have discovered that she has TWO uteruses. This has confused and overloaded my brain on the ramifications and what this means for her in the future. Let alone how to tell her dad , his mom (who drove us down) offered to let him know and find out his thoughts which I am happy to let her as I don’t know what to say. Part of me feels like the day she was born and we found out about her unique condition, we were speechless neither of us knew what to say to the other as we both dealt with our grief over the hand that we had to deal with. This is not a grief more of uncertainty of what it means but the confusion of what to do and say is still the same.

We have been back at the hotel since about 130pm this afternoon. Mommy went out for coffee with a friend while Janice and Grandma relaxed and played in the room. Janice is back to her old self which mommy is happy to see.