Welcome

Welcome to my blog which is about my family and I and how we deal with what life throws at us, which includes my daughter and her disabilities related to her spina bifida and her death on December 26 2012.

Tuesday 26 February 2013

Missing Janice

Nights are the worst. Most nights I sit up and cry for my lost little Janice. I didn't realize till Kevin mentioned it tonight how much I miss the sound of her board. Janice loved that board so much.

I still wonder what I missed and I still can't answer myself. Waiting that day outside future shop for my family I let the thought cross my mind once that Janice could ....pass and she did. I don't know how to go on. I know I have to and I am even working on returning to work. But NOTHING will ever be the same.

Even another child will not fill the void I feel in my heart and soul. One day Janice may look in on a sibling or two but even then I will still miss her and wonder what she would be doing if she were still with us. Janice will always be my first little angel. I wish every day that Janice was still here bouncing on my pillow and ramming my angles with her board. Forever in my heart, Janice Margaret Destiny-Ann Story.

Sunday 24 February 2013

Never ending Nights

The nights are relentless. They never end, they have a break when the sun comes up but they always return and always with the same result. I get the nagging feeling I should go and check on Janice, even though I know she is no longer here. It eats at me and eats at me. Then when I finally get up the tears start as there is no more denying that Janice is gone. Her room is rearranged, her stuff is still there but she is not. I could search the room forever and all I would find are things that used to belong to her and Janice's ashes and hair. 

Nights are the worst because there is no one. Kevin falls into what he tells me is dreamless sleep, and I don't feel right calling or texting anyone when I know they have obligations and appointments to attend in the day. So I find myself alone with my thoughts and memories. The confusion of where I go from here. I am a childless mother. There should never have been such a circumstance. I long for that love that only a child can show a parent, that gleam that was in Janice's eyes when she looked up at me. The way she said "mum|.

Janice was such a good little girl. You know she used to wait on her bed until she heard one of us and then call out, "mum? Da?" Janice would wait for us to say that she could get out of bed. Janice always wanted to "help". Even when I rearranged her room she was in there trying to "help" We couldn't get her out of the room. Janice even tried pushing the leg of the big girl bed. I finally put her on the bed so I wasn't worried that she was going to get hurt while I moved the furniture. Janice would have been such a great big sister and now she never will have the chance to prove it. 

Before Janice left us we were talking about giving her a sibling and now I am scared. I am almost terrified that if we did have another child that the same thing will happen again. Growing up I never wanted just one child but I honestly don't know if I could go through it again. Some days I long for it and others I want to curl up in a ball in a hole. I don't know what the future holds and I do hope that someday I will be able to push past this grief and fear and give Janice a sibling. But some days I just don't know.

Saturday 23 February 2013

Dreams and Angels

Everyone has dreams, dreams for themselves, dreams for their friends, and dreams for their children. Dreams carried about by the angels. That is what most people want to believe, but when those dreams are ripped from you and shatter in front of your eyes it becomes hard to believe in anything ever again. 

Dreams are what makes life worth living. Dreams are the thing that makes us who we are. Dreams make the cloudy days sunny. Dreams make the impossible possible. When you loose the ability to dream you loose live and be truly alive.

Angels come in all shapes and sizes and colors. Angels make the light shine on the darkest night. Angels are the innocent and the ones that wear the beauty on the inside. Angels can be young, old, big or small. Angels have nothing but good intentions and pure hearts. 

Janice had the purest of hearts and the most innocent star. Even if she can no longer shine from along side me, Janice will shine forever from on high as an Angel created from a dream. Kevin and I will forever miss Janice but she will live on in our hearts and memories. Some day we will meet again and when we do the only tears we will shed will be those of joy. 

I had dreams for Janice just like any mother does. I dreamed about her first day of Kindergarten. I dreamed of hearing about her first crush, first boyfriend, first love.  I dreamed  of her going off to college, getting married, and having a family of her own.  I to this day believe she would have been a wonderful nurse. Janice would have found a job that helped people. She would have continued to inspire the world. Now all I have left is memories. Memories of the beautiful spirited little girl that forever changed my life and who I could never forget, My baby angel Janice Margaret Destiny-Ann Story. 

I know what my dreams for her were but I can only imagine what dreams she had. What did Janice want to be when she grew up? What dreams did she have? Did she want to be a mother? What kind of boys and men would Janice have taken a fancy to?

Some people say that Janice went before she had a chance to see the cruelty of the world but saving her from a possible broken heart, prejudice that may or may not have caused her to feel different. Janice was a beautiful, unique spirited child that changed the lives of many and I wish Janice could have stayed with us and continued to touch the lives of even more as she grew up into the enchanting woman I know in my heart Janice would have become.

Sunday 17 February 2013

Variety Telethon reminds me of Janice

Tonight watching the Show of Hearts telethon has been heart breaking. It has been like loosing her all over again. It reminds me of how lucky we are to live in a place that has a charity like Variety. They helped pay that first exhausting month when Janice was first born and I lived with her at BC Children's hospital in Vancouver and subsequent trips, they were the ones making it possible for her to get her "chair".

It was just last year Janice got her first wheelchair, and she took to it like it had always been there. It was heart breaking when I had to return the loaner and we had to wait months for her to get another one that she never had the chance to out grow. 


Janice loved her board for the maneuverability but the look on her face when she figured out the wheelchair and was up at everyone else's level. Janice even played with her wheelchair, from putting her toys on it to trying to figure out how to climb onto it herself. Yes, Janice could get up on her bed and then climb onto her chair by herself, when she wanted to. My little girl could do so much but only when she wanted to. Janice was the perfect example of the "I CAN". Janice didn't need anyone to show her how she would figure everything out on her own in her own time. Janice figured out how to sit up on her own; Janice figured out how to climb the stairs both ways on her own; Janice figured out her skateboard on her own. 

Janice spent annual stays at the local Kamloops hospital because of her condensed chest. Every cold seemed to turn into pneumonia, even with flu shots and inhalors Janice still had issues with a simple cough. Janice is believed to have passed do to a complication that eventually shut down her little system. It was fast and she felt no pain I am told but it doesn't help. I got the call around 1pm that Janice's lips were going blue and by just after 2pm the hospital called to tell me I needed to get there and she was already gone. No signs, no warnings. Janice was up late playing with her dad and Gramps late Christmas Eve, didn't want to do anything but sleep Christmas Day. Once we got home around supper time Christmas Day she started drinking her formula and then had some diarrhea the next morning and was gone by the after noon. Nothing to let me know my little Angel was spreading her wings, Janice left too early and didn't even get to see her collection of Care Bears that she would have loved so much. Janice loved slides, bubbles, being in the water from pools to the tub, spending time with mommy, Dora, Care Bears, and just booting around on her skateboard. 



It took us over a month to be able to open her door and another week to be able to put her stuff away, clean and rearrange her room. Janice will never be here to be the wonderful big sister I know she would have been, if I can ever bring myself to open that door again. Don't get me wrong I never planned on Janice being the last but after loosing her I don't know if my heart could take the chance of it happening again. God never gives us more than we can handle - he has me pretty close to the edge of the cliff that I can feel my toes dangling. Everything happens for a reason - I really wish I knew the reason that my 3 year old baby had to die. 

Sometimes I swear I can see Janice sitting buried among the bears smiling at me, where she should be right now. Other times I swear Janice is sitting on her board telling me to put her bears on her t.v. But she isn't here at least not in a form I can see and hold. Janice exists now in my heart and my memories. What I wouldn't give to have you back, Janice? You stole so many hearts and will never be forgotten. I hope I will see you again but as Eric Clapton said "Beyond the door there's peace I'm sure, And I know there'll be no more tears in heaven"

ERIC CLAPTON - TEARS IN HEAVEN LYRICS 

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
'Cause I know I don't belong here in heaven

Would you hold my hand
If I saw you in heaven?
Would you help me stand
If I saw you in heaven?
I'll find my way through night and day
'Cause I know I just can't stay here in heaven

Time can bring you down, time can bend your knees
Time can break your heart, have you begging please, begging please

Beyond the door there's peace I'm sure
And I know there'll be no more tears in heaven

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
Cause I know I don't belong here in heaven

Saturday 16 February 2013

Janice's Favorite/common words

UP - when she wanted to be picked up or put on something she couldn't climb on to

Down - when she needed help getting down or wanted to be put on her board

Board - She wanted her skateboard

Done - She would come rolling into the bathroom when I was showering and ask "Done?" 

Bears - as in Care Bears; meaning she wanted to watch her Bears

Move - She always knew what she wanted and if you were in her way 

Mine/Money - these two words she had trouble making sound different but she knew what both meant and she loved her money lol

Mum - mom, I miss this one the most I think

Da - mostly Dad but sometimes a default for words she couldn't purnounce or Dora

Hand - when she wanted me to pull her on her board she would hold her hand up and say " hand"

doh - When she forgot something she would hit her forehead with her hand and say "doh" or "oh" it was very cute. then go and get what she forgot.

Please - she was very good about saying 
She never did get thank you purnounced but she tried every time

Eyes - mostly she meant glasses but she knew where her eyes were

outside - her first real word that I can remember her saying

bubbles - she loved blowing bubbles and that is how "da" got locked out on the balcony

Horse - one of the last words I remember her learning. She would climb on my back and say "horse" and I would buck gently. When I stopped she would say again  but she always dropped the "A"

Gain (Gen) - meaning she wanted you to do what ever it was you were doing again

More - She wanted more of whatever it was she was eating

Bow - she didn't want anymore of what she had but possibly wanted something else

Janice was always trying and never gave up on anything. I am told that at daycare she enjoyed being pulled around by her friends and when they went to the water park she didn't want to leave but when I took her to the wildlife park with her cousins she didn't seem to like the water park there.

Janice was quiet but she knew what she wanted and would let you know one way or another. The last bath I had with her was suppose to be my bath as in alone. I was relaxing and in she skooted on her board and says "mum" and starts taking off her shirt, lol. It was so cute. Once I confirmed that she had wanted in the tub with me I told her  "Go get dad" so she smiles and turns around and calls "Da!" until Kevin came and he got her undressed and handed her to me. The next thing I know she wants her toys from the other bathroom so again she called "Da" I miss her so much. 

I wish I could just download all my memories of her so that I would never forget a moment with her. But that is all I can remember right now. I feel sad that I can't think of more to write about her at this moment. 

Mommy loves you so much Janice and I will never forget you.

Thursday 14 February 2013

Again with the long nights

I had 4 nights of going to bed at a normal time and now I am again up till all hours unable to sleep. Even Grumpy is not helping tonight. I still cry going into her room. What does the future hold?

I can still see her when I see all the bears that she would have gotten at Christmas. It is almost like she is sitting amid the care bears smiling and giggling about her "bears". I miss her so much. It has been almost 2 months and I still expect Janice to come rolling out of her room. I still wish to stay in bed waiting for Janice to come rolling down the hall calling "mum" to wake me up so she can bounce on my pillow while watching bears.

People tell me it will get easier but it seems to be getting harder or worse yo-yoing. I feel so confused and lost... About more things then I care to blog about . I just want Janice back she didn't deserve to die.

Tuesday 12 February 2013

Feb 12 - Thoughts

Janice was so precious, sweet, beautiful, and full of life. I am left feeling empty and alone. Everyday I have to wake up to the reality that my little angel is in heaven and never coming home to me again. Janice you meant so much to mommy, why did you have to go? I can't get over you; I can't move on without you. How do you ever stop crying? When do the memories stop making you cry out in pain and anguish from the knowledge that there aren't going to be any new memories? The care bears make me cry now because they make me think of her and how much she loved them. Janice reminded me of myself when I was young and believed that somewhere in the clouds those loving bears were hiding and were smiling down at us. 

Why us? What did I do to deserve having her ripped from my life? Was I not there enough for her? What did I miss? How did I fail her? 

Janice was so happy and energetic and having so much fun on Christmas Eve and then to be gone from this world in a mere 48 hours seems impossible. Yet it is my reality. It is what I have to live with and it isn't fair!  I wish I could hear her calling "mum" or "again" or "horse" as she climbed on my back. I just want to hear her voice again. Hear her rolling around on her board. Watch her sleeping again. I will never get any of that. Why? 

How do people expect you to just go back to your life after a loss like this? Sometimes it feels like people say "I'm sorry for your loss. So when you coming back to work?" How? No one seems to realize what I am going through and even if they don't say it I know that they expect me to put it behind me. Yet how many of them have gone through anything like what I am? They have no right to EXPECT anything. I will pick up the pieces and rejoin the world when I am ready. 

Monday 11 February 2013

Feeling alone

The last few days we have been cleaning the apartment and putting things in their place. I feel so lost without Janice. She was so precious and now I feel so alone. I feel empty. I feel scared and unsure of where I am going. I don't know what to think any more. Before Janice died Kevin and I were talking about maybe having another baby and now I am not sure. I always wanted to have a couple of kids not just one, but now I don't know if I could deal with it. 

Janice would have wanted a sibling, she would have been a GREAT big sister. Then there is all the medical issues that Janice had and could I deal with that again. Let alone if heaven forbid we lost another one. My heart is still broken from loosing Janice. How does anyone move on after the loss of someone so precious, young and full of life?

I feel so alone and don't know how to stop feeling like this. It is the feeling of being in a crowded room and feeling like no one can hear or see you. It could just be me but I think I am even worse now then I was when last month. Could I be getting worse? I mean can grieving get harder the longer someone is gone? 

I just want to cuddle my little Janice. I want to hear her calling me and wanting me to watch "bears" with her. I could just crawl up on the bed with her forever. Just stay like that forever. Another morning of watching her bounce on my pillow. 

Everyone says "it will be ok" How will it EVER be ok again? My child, my sweet innocent daughter is DEAD! She is NEVER coming home again and all I want is to have her to hold and love again.  I will never get to see her loose her first tooth or go to school and see Janice show the teachers how smart she was. Janice was so smart. People say on facebook how they get snuggles and they get to post new pictures of their little ones and I don't get to do that any more. |Janice is gone and there is nothing I can do to bring her back. I was her mom I was suppose to protect her and I failed. I failed to save my little girl and now I am alone. I know Kevin is here but I still feel alone I can't explain it. Or maybe it is because I can't seem to talk to any of my friends any more because none of them can understand what I am going through.

Tuesday 5 February 2013

About Janice

My little girl was born on September 15, 2009. She was named Janice Margaret Destiny-Ann Story; Janice after Janice Yoshy; Margaret after both her Nana Story and Margaret Yoshy (a great-great aunt who passed away earlier this year), Destiny because she was my little gift that had to be; Ann after her GG and well Story because she was her father's daughter. Janice came with her suitcase full and a smile that stole more hearts than I know of. 

Janice was described as unique and she stuck with it she loved being unique. She was born with brown hair and by 6 months was blonde with blue eyes that never left. For being genetically Asian and native. Janice was born with spina bifida (.3% chance). Conventional mobility devices weren't for her, took me a while to find something she liked... a skateboard. 

Janice had a mind of her own. She was quiet, only speaking when she wanted to. Janice loved dolls and bears (care bears); Before her passing she was putting on and changing her own shirts, wanting to "help" with everything, and always wanting to make us smile. Janice figured everything out on her own from climbing stairs to arts and crafts. She loved painting and having her friends pull her around at daycare.

Janice had so much love both to receive and to give it blows my mind as to why she was taken so soon. She would have gone so far. Janice never heard "you can't do". If other kids her age did it Janice was going to do it to and for the most part she did. Janice never let anything hold her back. Even the day she died, when her dad asked if she was ok.... Janice nodded. My little trooper. 

I am scared I am going to forget things and I don't want to I want to hold my Janice again. Even though we always seemed to be seeing one doctor or another she rarely complained, unless they were poking and prodding. Janice tried so hard to be like mommy and I don't know if she realized she didn't need to try she was mommy's mini-me. 

My borrowed angel, forever young, dream come true, I will forever love, cherish, and miss you, Janice Margaret Destiny-Ann Story ( September 15,2009 - December 26, 2012) 
Three birthdays and four Chrismas' before she flew home to heaven.