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.

Thursday, 15 May 2014

Mum's Pillow & Crawling

Tonight I find myself thinkjng of the nights Janice spent sharing a bed with us. She used to fit between our pillows and she would put her head on my pillow and her bum under her da's. Throughout the course of the night Janice would keep telling me to "move" and proceed to steal my pillow. Most nights I would end up on the bottom corner of the bed on the flattest pillow we have and I would wake up still sharing a piĺlow and my good pillow would be unoccupied.  What I would give to wake up like that again?
Or to see her bouncing on or sleeping on my pillow as if it was a bed. Oh,  to have her wake me up to steal my pillow and ask for her "bears".

Abbygail is starting to move and roll which reminds me of watching Janice make her way down the haĺl at Popo's to the bathroom for her bath. Janice loves her baths. First crawling and then on her board. I remember I was so proud that I video taoed her doing it at least twice. There was also the time that she went all the way to the bathroom and closed the door in my face and then peaked out.

Popo and Goong Goong told me how she would stay in the tub playing until Goong Goong told Janice her show was starting then she would call for Popo and you couldn't get out fast enough.

I miss Janice so very very much. Wish you were here my sweet angel Janice.

Thoughts of Janice

a friend posted to my wall today:
I wanted to tell you this... So I was on your profile on my phone a couple of days ago (to show Kailani the Hello Kitty set I am ordering from you..) and she saw Janice's picture. She asked me about her, and I said "Sorry but she's no longer here..." and Kailani said "Awe Mom, she looks like a little angel..."
I teared up...

With Mother's Day approaching I keep thinking of you, Janice. What would the card you made look like? What would we do for Mother's Day? Maybe just us girls would go out... I wish you were here to give me some home made gift or even just one of your exaggerated hugs.
What I would like for Mother's Day.... is to hold you again

May 15
Today I ran into a friend of mine, whom I hadn't seen in a while. We got talking and she mentioned how memorable Janice was and that there were pictures of her up at the daycare. Her boys saw Janice's picture and asked who she was. My friend responded "That's Mommy's friend's daughter" her boys then said they wanted to play with her. It almost made me cry. 

Thursday, 8 May 2014

Things Few Understand

It has been a while since I posted and tonight I just felt that I had to. 

As much as people try to understand and make me feel better, I feel none of them understand. Especially with Mother's Day on the weekend I feel so much on the outside.

I love both my daughters but Abbygail doesn't and never will fill the void that Janice left. The memories I have of Janice flinging herself off my chest the first time I held her, two nurses poised behind her in case she did accomplish flying out of my arms. The many nights at Children's Hospital rocking Janice not sure what the future held just knowing that in that instance Janice was mine and that I loved her more than I had loved anything or anyone in my life to that point. The way Janice would light up when she saw me; the way she would fling her arms around me to hug me and say "Mum"; the way she would inch toward me as I was leaving for work and in a soft pouty voice say "mum?" as if asking permission to come with me, and it would break my heart leaving her behind even though I knew I couldn't bring her to work with me. 
I miss her so much.
People made it sound like Abbygail would heal my heart and make everything better. They didn't and don't understand the heart break that never heals, the scar is always there.
Each holiday that goes by and I hear about Mother's Day teas and the things other people's children are making them and apart of me wants to scream. Janice would be starting Kindergarten this September, and be having her 5th birthday and I have to wonder what crafts and cards and other silly things she would be making at school and daycare to bring home for us. What she would be wanting for her birthday? Would she still be into Care Bears? How many friends would she be inviting to her birthday? Would Janice have been doing the Therapeutic Riding? and would she like the horses?
So many questions and no answers to go with them.

Yes, I have Abbygail; but she can't replace her sister, nor would I want her to. They are each their own and I wouldn't want it any other way. I had my tongue sucker and now I have my thumb sucker. But I will never stop longing for Janice to be in my arms. I will never forget the fact that I am the mother of TWO although I only get to watch one grow up. 
Janice is FOREVER apart of our family.

Wednesday, 26 March 2014

Time Goes By

One year and three months ago I list my little girl. Janice would be four years six months eleven days today but instead she is gone to heaven, leaving me to sit quietly holding her baby sister Abbygail as I reflect on what she should be doing.

Janice should be cooing over her sister and bugging me to let her help. This fall Janice would be starting kindergarten. So many things Janice will never get to do or see or experience.

Everything I do to keep her memory alive seems so insignificant. I know friends and family will remember Janice but few if any will remember her from her generation, from daycare, or anywhere else.

Janice deserved so much more.
Abbygail deserved the chance to know her sister.
There are so many things I wanted Janice to have the chance to do and see. Janice had such a light inside her, she was filled with determination and life. Janice could have been mistaken for an angel on earth...who am I kidding she WAS an angel on earth. Janice inspired and brought light to so many. I find it hard to believe that she was done on earth, there is so much more, so many more people's lives to touch.
A light put out too soon, Janice my lil angel.

Saturday, 1 March 2014

Reminders and Memories

I am finding that so many things remind me of Janice. Whether it be people talking about their children doing things that Janice should be doing or watching Abbygail do things for the first time or just thinking of what/where Janice should be now in her social and arts & craft stages. I remember how Janice's pronunciation of "snow" came out more like "nose"; how proud Janice looked as she copied Daddy saying her alphabet. 

Janice would be regularly bringing home art projects from school and would be looking forward to Kindergarten this fall. She would be more engaging and talking more. I can sometimes hear her saying "baby? baby!" when I am holding Abby. I wish I could see how much Janice would have grown in both mind and body in the past year, she was such a smart little girl.

Abbygail is showing that she doesn't just look like her sister but she is quite quick as Janice as well. At just over a month old Abby is rolling on to her side and even trying to hold her bottle on her own. Abby sleeps about 5-6 hour stretches at night. She is still eating almost all EBM but I think she is getting close to eating more than supply. 

I haven't really posted on my blog in awhile because I am trying to keep it positive but I still struggle some days with my grief and those I keep in my private/personal journal. The tears aren't as frequent but I still miss Janice and I always will, I don't know how many of those reading this will actually understand what I mean. Then there is the stupid government that stopped paying me at the beginning of February to re-evaluate my claim as it is no longer medical but maternity. Frustration is setting in as I need that money. They say they should have a decision as of March 10th but that doesn't help me today. Stress and grief can really take their toll especially when you are also dealing with physical pain, my back is feeling better but my right rib is still painful. Most likely muscle pain but have an ultrasound on the 4th to rule out gallbladder. 

Friday, 14 February 2014

Grieving

Since becoming a mother I have found that I have done a lot of grieving. I grieved for all the things that Janice wouldn't be able to do because of her spina bifida. I grieved the fact that Janice had spina bifida. Then when I thought I was done grieving and had come to terms with what Janice's life was meant to be and was finding joy in the things that she found happiness in, then we lost her. I then began grieving the loss of my daughter Janice. I still don't understand why we had to loose her. Now I find that I am again grieving. This time I am grieving the relationship that my daughters will never get to have. The sisterly bond and connection that all sisters should share that my daughters will not get to experience.

So much grieving in such a short time. It isn't fair.

Thursday, 6 February 2014

Abbygail Deanna Lee Story

Janice's little sister Abbygail Deanna Lee was born on January 22, 2014 at 901pm weighing 8lbs 8oz. She was delivered by c-section because the doctors were worried about the fluid levels in the ultrasound on Tuesday. She was born at 36 weeks and 3 days. She spent two nights in the nursery and yesterday afternoon she was allowed to join me in my room. Finally today at about 3pm we were both released from hospital.
I thought I was doing so well but during supper I lost my appetite and tried to lay down which failed and I ended up breaking down further. I am on the verge of tears having already broken the dams. I feel shaky and can't eat. I am sore and achy and not from the surgery. I feel like I am having a panic attack and don't understand why.

Tuesday, 21 January 2014

Closer seems to mean complicated

Today I have come to the conclusion that things just seem to keep getting more and more complicated the closer to delivery we get. I met with my gynecologist this morning and because my blood pressure was 170/94 and baby's heart rate was 165 I was sent straight up to the hospital for an NST. Both came down in about an hour to hour and a half. I had fetal and renal ultrasound today, still waiting on results and I also got more blood work ordered. I am hoping that I will get the results tomorrow as doctors office closed about an hour ago. I am nervous about the whole situation. There was the possibility that baby could have been born today if the numbers didn't come down, but they did.

Due to the concerns with blood pressure I still don't have a date. Although from what the doctor says it will be before the end of next week. Another NST on Thursday and gyno appointment on Monday. Tuesday is the usual routine of ultrasound and NST although it is going to be an early start as ultrasound scheduled at 8AM.

I found some reviews about my new gynecologist. All good and positive. 

Monday, 13 January 2014

Memories & Emotions

It is funny the things you remember and what makes you remember them. Today I was only up for about 6 hours and slept the rest but now I am back up due to an ache. This ache seems to occur always in the same place as of about last Thursday. But back to the memories. 

We have a digital picture frame that cycles through Janice's three years and some of the pictures I don't actually remember them being taken while others I can picture the day and see it so vividly. There is one where she has her doll in the doll carrier that we got her and another where Janice has two dolls in her bucket car seat. Really we could have turned her around so much earlier than we did but I was waiting and I guess hoping that she would get to the proper weight. I think it was only the last year that she faced forward in her car seat. Janice always liked being able to look forward and be up where she could see things. I miss her. 

I know this baby is almost here and will be here in a few weeks but it will never change the fact that Janice isn't here or that I lost my first born child. I know logically that there was nothing that could have been done to change Janice's passing, I have played it over and over in my head so many times that I know that; but it doesn't change the fact that it isn't... wasn't fair. I will always be missing a piece of myself, the piece of me that left this world when Janice passed. 

Her siblings will know her as best I can but it isn't the same as growing up together. I intentionally waited and put off having any more children wanting Janice to have some independence and freedom before introducing a baby into her life. But sadly in the end that meant waiting for her to pass from this world. The irony is that it was only the day prior to her death that we actually started talking about it. Sure people had asked if we were going to have any more but I knew that I needed Janice to be situated first and so I put it off. Janice would have made such a good big sister and I can see her face lighting up at the sight of her baby sister...pictures that will only ever be in my mind as Janice isn't here for me to take them. It is funny how that is. 

I feel that I am in a good place to have this baby but that will never take away the pain or longing that will forever be a part of me. The part of me that Janice filled and although I know that she is always with me it is not the same as being able to hold Janice, hear Janice's voice and laugh, being able to see Janice and watch her do all those quirky things like doing donuts on her board, being able to watch Janice grow up with her siblings and watch Janice turn into the beautiful, intelligent, and inspiring woman I know in my heart she would have become. I always knew that I would have more than one child I just always thought that they would both be living and thriving. Janice is forever apart of us and our lives and that will never change. 

Mommy loves and misses you Janice Margaret Destiny-Ann. You are never far from my mind and always, forever in my heart.

Saturday, 11 January 2014

Numbered days

As the days grow numbered until Janice's sister joins this family I find I still have moments when all I can do is think about Janice. I find myself reminiscing about those first few months and how much I loved Janice from the first time I saw her in the incubator and how  Janice felt in my arms the first time I held her. Janice screamed the whole time and there were two nurses standing ready to catch her as she tried to fling herself from my arms as I held her to my chest. 

I wonder what toys and things Janice would be telling me were "hers" and which ones her sister could have. I wonder what questions Janice would be asking. I think of how Janice would sit on the bed when she was brought in to meet her sister and can almost picture her big smile. Janice would have been so proud and happy to have a little sibling. I could almost see her trying to give them a ride on her board. Can you picture Janice trying to hold the baby that will probably be almost as big as she would be? 

Oh how I miss Janice and wish that Janice was here to see her sister. Janice would have made such a wonderful big sister and knowing her trying to help with everything. In 2-3 weeks Janice will be a big sister and the saddest part is that she isn't going to be here for it. I won't get the pictures of the two of them meeting for the first time. I won't get the pictures of them together. I didn't get the joy in telling Janice she was going to be a big sister and have her ask me all the questions a 4 year old asks. 

Janice will be a big sister but her little sister will never know her. She will never know the love, spirit, determination, or light that Janice would have shared with her. She will never know how Janice would have stood up and protected her. This baby is not an only child but they will never know what it is like to have an older sibling.