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.

Wednesday 24 December 2014

Posting update timeline

Anyone that follows my blog must wonder why sometimes posts arenmonths apart. The answer is I don't want to hurt anyone's feelings and when I blog it is mostly when I am in a state of extreme emotion. There are also times when I just do not want the world to know something. I filled another diary last night. That is where I do alot of my writing as I can limit access to it and don't have to censor as much, also writing on paper with a pen is thereputc . This blog is still active but there are gaps because it is not a diary and depending on life which is more convenient.
There will most likely be an emotional and sad post in the next few days.

Friday 8 August 2014

Intervention??

Yesterday a friend sent me a message that frustrated me and to be honest pissed me off because they came to their conclusions based on what they saw over 24 hours after barely seeing me for 5 years. Keep in mind that I am 6 months out from having given birth to Abbygail. Here is part of the message:

You are not going to like what I am about to say to you, you will probable be angry, you will probably say to yourself "Great, another person lecturing me" and you will probably try to tune me out. But you need to pay attention to these words. I am worried about you. I know you have struggled with your weight almost your whole life, I have as well so I know what its like. However, Tanya you have let it get way out of hand. You are no longer a little over weight or just a bigger girl anymore. You are obese. I'm sorry if it hurts to hear me say that but it's true. And this isn't bad just because you have diabetes, it's bad to be obese no matter if you have an underlying condition or not. You NEED to lose weight. 

In the last year I lost my daughter Janice at the age of 3 and went through a second pregnancy. I am down to my pre-pregnancy weight but am still over 200lbs. Keeping in mind that I am diabetic and insulin doesn't help your weight and I could also drink less pop as aspartame also doesn't help. But I am regularly seeing my doctor and diabetes clinic. At my last visit with the clinic we went over what I eat on an average day and about working on walking between 5000 - 10000 steps, which I would have told her had she asked.
You have a commitment to be here for your daughter, Abby. Do you want to end up leaving her without a mother because you couldn't be healthy? I don't want to see you die of a heart attack at 40 and neither does anyone else. Plus, you are diabetic, that reason alone is why you should be being healthy. Most people who are diagnosed with diabetes lose weight, not gain.

My response was:
Guess what I see my doctor and diabetes clinic regularly. I am currently working on walking 5000 steps a day. I have been eating a LOT of fruit the last 6 months and most of the fast food I eat is because popo takes me there. As for the chips the other day I had been wanting them for almost a month and I was on my period so excuse me. I have weighed myself recently and am at my pre-pregnancy weight. The fact that you and my "family" are talking about me behind my back hurts. I am sorry that I have put on some weight in the last year and a bit but it has been a HARD year and NONE of you know what it is like to go through what I have. I may message you again once I have cooled down

She proceeded to argue with me that I should do more and that she had talked to my family before talking to me. It is frustrating that she berated me without any consideration on what I have been through or asking what steps I maybe taking to lose weight. Proceeding to tell ME what MY problems are and what I should do. Where are her credentials? She is not a dietitian or medical professional.

She claimed that she was basing her judgement off of years of seeing my eating habits when she has barely seen me since she moved out of town 5 years ago.

I just wish she had taken a different approach with her concerns and it would not have hurt as much as it did.

Saturday 5 July 2014

Grief and Differences - posting drom june?

I find it frustrating the people who imply and seem to think that I should be over the death of Janice. It has been a year and a half but the wound is still fresh, even with Abbygail here with us. A lot of people don't seem to understand. 

Loosing a child isn't something that after a day you are better, a week you are moving on, a month you are back to yourself. Loosing a child is a life changing thing that you will never be the same after. 
You will always think what would they be doing now? What would they think about this? You always wish that they were in your arms giving you a hug. 
Years can pass and you will still miss them and still wish that they were still with you. 
As you watch future children grow and hit those precious milestones will remind you and make you think of your precious heavenly child.

Loosing a child is different for everyone. Loosing a child who has reached adulthood is different than loosing a teenager; loosing a teenager is different that loosing a child; loosing a child is different than loosing a toddler; loosing a toddler is different than loosing a infant; loosing an infant is different that having a stillborn; having a stillborn is different than a miscarriage; And none of the above is anything like loosing a sibling, spouse, parent, grandparent, aunt, uncle or pet. Daring to compare the loss of a child to  loosing a sibling, spouse, parent, grandparent, aunt, uncle or pet is an insult and disrespectful of the grieving parent that lost their child. 

I feel jealous that almost everyone I know gets to have all their children and I had to loose one. What did I do wrong? What did I do to deserve this? Don't get me wrong I don't wish it on my worst enemy.That doesn't change the fact that seeing so many people that get to have those beautiful pictures of their children together, the complete family, those pictures I don't get. 

I don't care if I have posted similar things before it is how I feel. I bottle enough things. I journal enough things to prevent what I am going through from hurting others. 

Abbygail is growing and becoming a beautiful toddler. At 5 and a half months she is doing wonderful but there isn't a day that I don't wish that her sister was here; That Abby could meet and play with her sister. Everyone looks at me like there is something wrong with me when I have a bad or off day because they somehow think that having Abbygail loosing Janice shouldn't cause me any more pain. I don't care who you are it could be 10 years, 25 years 50 years and I will still miss and wish Janice was still here with us. Janice should be playing with Abbygail, teaching her how to get into trouble, reading to Abbygail; instead I sit here watching Abbygail play on the floor alone, never to know her older sister and what the two of them are missing our on. 

Abbygail is eating a small jar of food for supper for the past 2 nights. She is rolling and getting close to crawling and teething and loosing that baby look that Janice and her shared. Abbygail is becoming her own. The sleepless nights grow farther apart but are always just a sunset away.

Wednesday 18 June 2014

She's been on my mind

Janice is on my mind again. When I couldn't sleep I would go into her bedroom and tuck her hair back and out of her face and pull her blanket up to keep her ware even though I knew she didn't like being covered up. I would sit on her bed and talk to her and somehow that helped and I could go back to bed and sleep. 

With Abbygail when I try that it reminds me of those nights in Janice's room and makes me want to cry. I miss Janice so much. I can see all the things that she would be doing with Abby and to help with Abby. But she isn't here. Janice is gone and will never get to experience being a big sister. 

I wish we had more videos of her. I miss her little voice so much. I wish so much that the past year and a half was a horrible nightmare and I would wake up to Janice stealing my pillow. I know this blog has turned into me saying a lot of this stuff over and over again but I can't help it. My family of 3 should be a family of 4. Janice should be here and she isn't. I just want to scream "WHY?" 

People try to tell me at least she didn't/isn't suffering. Have you seen the pictures? Show me the picture that tells you my little angel was in pain or suffering. Someone tried to tell me she was spared the bullying that Janice would have endured when she got to school. I really don't think like that, Janice was so friendly and full of life I think anyone that tried would have been faced with many others of Janice's friends. I know that medically she had some issues but I wanted to think that my little angel Janice would have over come them with all that determination she showed us on a daily basis. Janice never let anything stop her. 

I sit here in front of the laptop crying as I type this, my only outlet for the grief that still eats at me. The guilt that when Janice needed me the most I wasn't able to be there for her. I should have been beside her in the car as Kevin drove her to the hospital that fateful day. It is still so vivid in my mind. The look on Kevin's face as he handed her still form to me. I wanted to scream but found no voice. How still and quiet she was; somehow part of me wanted to believe she was just sleeping. Even in the funeral home she always looked like she could wake at any moment. I feared leaving her that night thinking what if Janice wakes up and mummy isn't there? The coldness of her body in her red Christmas dress complete with hat, her pink mitts and pink Yoshi that will forever be with her. 

People try to tell me to get over it. They imply that I shouldn't cry or have bad days any more because I have Abbygail, Those are the people that have their perfect happy families that don't understand the feeling of knowing that your family is always missing one. The ones that don't know the silence left behind by a child not being there any more. Every day wondering what that missing and lost child would be and should be doing. Seeing something in a store and thinking how much that Janice would have liked it. The people that don't know the pain of having to open gifts mean for a child that will never see them, never play with them.

Janice would be turning 5 this September and starting kindergarten. Janice should have brought home mother and father's day crafts from daycare. Janice should have been having gotten used to her "chair" and using that to go our and about while still using her "board" when at home or at the water park. Janice loved the water, I wish I had more pictures and more videos of my sweet little girl that left this world too soon. .

Thursday 5 June 2014

Expectations

I lost my daughter and although 99% of my friends and family have NO idea what that is like, I still feel lile they judge me.

Janice has been gone 1 year 5 months and 10 days; yes, she now has a little sister. Why do people think that because of these 2 things I should be better? At least that is how it feels.

I wish you would all understand time doesn't fix this. Time and or having another child doesn't change the fact that I lost my daughter. Nothing can bring her back. Nothing can mend the hole in my heart that longs to hold her, to hear her voice and her laugh,  to see her grow into the beautiful and smart woman I know Janice would have become.

Yet whether it be the look in your eye or tone of voice or the words you say; the message is still "aren't you over it?"
I didn't loose a puppy. I lost my vibrant beautiful child that didn't even get a chance to really live.

Then you expect me ti be able to be happy, smile and be able to look at other children without longing and thimking of what Janice should be and would be doing.

Janice would be turning 5 this September and starting kindergarten.  She would have a wheel chair and spcialized bike by now to get around. Janice would be telling me stories and telling me what she wanted to get, what she wanted to wear, what she needed, even telling me what she wanted to do for her birthday. Janice would have a list of friends. But no one asks or talks about her. It feels like the more time passes the more people forget about her.

Last night at dinner my nieces wanted to hold and help feed Abby. That should have been Janice.

FYI the clichés don't help. Time doesn't heal all wounds, it just gives us time to adjust to the scars. She is in a better place? Seriously? What is a better place for a child then in their parent's loving arms? At least she didn't suffer, were you there? How do you know my child was or would have suffered?  And if we are going that route then why am I still here to endure the pain and suffering that came in the wake of loosing my child?

For those that say you can decide to be happy, what do you think I do 90% of the time? I put on a smile and I do my best to fit in with this world and not break down and cry when I see all of you with your happy, healthy families and knowing you aren't jaded like I am. You don't have the constant fear of loosing anyone else.

I am sorry if this hurts people to read but this is MY blog and MY feelings so I will post what I want. YOU CHOOSE to READ.
I LOVE Abbygail but I will NEVER stop missing Janice.

Hard finding the Joy

I feel bad because I can't feel happy when my sister and her daughters visit or ask me  to go and do something with them. I just feel sad because Janice isn't here and she would be doing a lot of the things my nieces are doing. My oldest niece is 6 and youngest is 3 while Janice would be 4 turning 5 this year. Even with Abby I still struggle to smile and pretend to be interested in my nieces banter and babbling. 

Is it wrong? Am I wrong in feeling this way? Will it ever end?

Why does it seem everyone I know gets their happy, perfect families, while my family is forever 1 short? Tonight I had a family dinner with my sister, nieces and grandparents. My nieces weren't eating and all I could think was I never had trouble getting Janice to put food in her mouth. She may have pocketed certain textures but Janice was getting better at eating and was almost off of the tube feedings when she passed. 

Last week we received a visit report for Janice from her speech therapist that was post marked November 2012. It was like a knife being twisted in my heart. I just haven't been myself since. I just feel stressed and depressed. Also last month the digital frame that we bought to remember Janice died. Spring just isn't my season. 

Wish I could feel better.

Wednesday 21 May 2014

Remembering that horrible night

I got to spend 3 beautiful years with Janice. But I still struggle with that horrible night when we had to leave her at the hospital. She was born with many complications and many tell me we were lucky to have her for as long as we did, but all the times she was hospitalized and all the doctors appointments I always went with her. I think she may have spent 2 or 3 nights without me being on the hospital grounds.

Leaving her behind that night I kept wanting to run back to the room. Part of me worried that she would wake up and see that we weren't there with her. I still cry thinking of that night and I am going on a year and a half out. It was heart-breaking walking into the ER room and seeing my husband holding her still form I literally felt my heart break when I saw them and he reaffirmed what the nurse had said which was that my little girl was gone. I was told when they got there she was unresponsive and that the doctors tried for around 30 minutes to revive her without success.

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.