Monday, 30 May 2011

The Velveteen Rabbit

Jack, yesterday I watched a movie you would have loved so much. It was based on one of your favourite stories called The Velveteen Rabbit. I cried through most of it as it reminded me so much of our story time together. I miss holding you in your rocking chair and reading to you. Everyday takes so much effort without you. I even read to your urn and take it landscaping with me. I hope you liked the view today.

Sigh, its just not the same though. I wish I could feel your presence by having your urn close but I don't. Even so I will still keep you by my side in your urn wherever I go. It reminds me of the story of the Velveteen Rabbit. The stuffed little bunny who finally became real because the love between the boy and his toy bunny was so strong. Maybe someday you wont be just an urn, maybe you'll be real again. I am not one for accepting things or giving up. Weird and irrational-probably, but I don't care. I will never stop believing my baby.I love you


Mummy and Jack Forever

Thursday, 26 May 2011

A Very Silly Pair

These are a set of serial pictures taken seconds apart. I always look at them and smile. They remind me of how silly Jack and I were together. They were taken by Daddy at 6am in the morning.  I woke Jack up early to feed him  and get him ready for one of his doctors visits at BC Children's Hospital. I believe it was early on as it was before he started having problems eating and had to get the ng tube.
"Mummy this is my sleep time"
"Oh hello Mummy"
"OK I'm awake and smiling now"
"Daddy says look at the camera"
"Daddy says wave and make a silly face"
"Daddy says okay now be serious"
"OK Mummy enough of this its time to eat"
"Uh hello Mummy I said its time to eat"

We were a silly pair Jack. I miss you my MR and I'm dreading when I run out of pictures.
Jack and Mummy forever

Tuesday, 24 May 2011

Around the world


Jack,
 the need to hold you, care for you and teach you hasn't waned and possibly never will. There were so many things I wanted to share with you about life. I'm sure you would have enjoyed all the science and animal documentaries that Mummy has collected. We had hoped to peak your interest in animals. We still have your vast collection of animal stuffies- in your nursery and in your bassinet with your urn. One for everyday you were in the hospital. The hospital had an amazing gift shop with beautiful little animals. The nurses played with them too.
 As you got older I wanted to teach you about different cultures as well and all the people around the world. Mummy had been to Germany and also lived with a Vietnamese family for quite awhile. I miss their food. It makes me happy that people have stopped by and seen your wonderful smiling face from all over the world. I wanted to tell you that you had visits from Germany, United States, Singapore, South Africa, United Kingdom, Italy, Portugal, NewZeland, Columbia, Bulgaria, Japan, Malaysia, Australia and of course you own country Canada. I can picture you now being excited as I pointed to the different countries across the globe.
 Grief is universal and I do think and know there are so many families from all walks of life that are struggling with it. The need I have for you Jack is a torch that many carry in their hearts for their loved ones as well. Just like them I will always need you my MR. Jack and Mummy forever

Saturday, 21 May 2011

Jack and the Airplane


Last night I was out on the patio looking at the stars when an airplane flew by , it was flying low and going slow when all of a sudden it was like I was in a different time. Jack was there he was 3 or 4 years old I think and I was crouching down next to him. He looked like his usual quirky self still -with the long mane of silky reddish blond hair and the wide smile spread over his face. It was still the same time around 11 pm. Who knows why we were out there or why he wasn't tucked away in bed but I was saying to him "look at the airplane Jack, see all the flashing lights, there are people inside that plane.Wave at it Jack. Wave at all the people. He was mystified by the plane and when I started waving at it  he followed suit using both his hands, shaking them wildly and jumping up and down and laughing. Then just like that in milliseconds it was just me again staring up at the plane and the stars. It felt so real and then I cried. I will always picture you by my side Jack and hopefully my  imagination will allow me to see you grow up, I love you MR.
Mummy and Jack forever

Thursday, 19 May 2011

Thoughts

Jack,
  I am still trying to put all those bad memories of your struggle out of my head. Does it ever stop? I am struggling with my weight and appetite but I am trying. I was active in your care at the hospital and it is sooo committed to my memory. I still think of everything I witnessed there , not only your struggles but the other children as well. I wish the sight of you with half your face gone would stop popping into my head. I have always been a very sensitive person and am so devastated by what I saw.
 Even when I am busy those thoughts distract me in anything that I may be doing. I go outside and get stares from people making stupid assumptions cause I look like a pale anorexic druggie. I hate those stares from people who don't know me. In the hospital I did not sleep and barley ate so I am down to 78 pounds; but I am working on it.
I try and remind myself of all the good things but its so hard  for me to stay in just that one place in your life.
The way you were at home  makes me smile.The loud grunting you made that always let me know you were pooping. You could here it a mile away. I remember you loved to talk a lot on your change table, you always had a very in depth conversation with the white wall.  You always stared at it and talked and talked( cooed, squealed and laughed) as if there was something there . I even checked the wall for a spot, a dent, a crack something that caught your eye but nothing - just wall. Silly, silly Jack.
I smile at the bash full looks you gave the young girl nurses (earlier on in your stay)when  they took off your diaper and the proud smile that spread across your face. You loved showing off your pee pee. You never cried but made angry growls at home when mommy took a long time to figure out what you wanted. The farts, you farted louder than Mommy and Daddy and just loved to do it when someone was over for a visit.
You were so funny baby and I am trying to just remember all the good but ugh its so hard



Missing you- Mummy and Jack forever

Wednesday, 18 May 2011

No Fear

I can pat an african lion
and swim with the sharks in the sea
I can hold a cobra snake
and have a tarantula crawl on my knee
I can ride on the back of a crocodile
float with a jellyfish and buzz with a bee
I can even climb with a giant gorilla
all the way up to the highest tree
or dive off a cliff with an eagle
and land in the mouth of a nasty grizzly
 I have no fear as I was sick  and unfortunately
There were no donations to my Charity
and so it was far too late for me
yes far too late for me

Dedicated to Jack Damian Wilbee by Mummy

Medical Science has a long way to go. Don't wait-donate
Mummy and Jack Forever

Monday, 16 May 2011

The Lost Future

Jack, I am always thinking of all the things I would be doing if you were here.  The appointments for speech therapy, feeding therapy,developmental therapy, physical therapy and of course just enjoying you at the same time. Daddy and I picture what you'd be like all the time- we never know wether to include the Jack after the heart attack or the Jack before. Jack after would have also included the home dialysis, the ng feeding,  getting a lift and wheelchair etc.. and the brain development and learning because I would never have given up. I really believed you would have made it far past the mental stage of three months old with encouragement. The brain people well they were just estimating a guess and have been proven wrong before. Anyway any challenge that Mummy and Daddy had, we would have been thankful for.


 I also picture happy healthy Jack, running around doing silly things and tearing up the house. We were happy you were going to be so different from other children, being that you were going to be our only child we looked forward to the challenges and had great hopes for your future. Not that you would have been a rocket scientist but we envisioned you working on a farm or with animals and living with us forever-if you wanted too. We have always been "odd" people and you were perfect for us and fit right in. I know this sounds crazy but I asked your Daddy the other day "What if we have another baby and it turns out normal?"he thought for a minute and said "any child we love ,will love us back" and I know he is right. I still wish I could look forward to a very different  future with you and I miss it very much. Jack and Mummy forever

Saturday, 14 May 2011

A Lesson Learned

Ive have found bereaved parents who have been on slotted with love and support from friends and family and others who have not. Sadly I fall into the latter category. I do have some family and a few friends who are trying to walk me through this marathon of roller coaster grief . I would like to thank them for being there and for trying to understand. I know there are many that just don't know what to say but something is better than nothing at all. It lets me know who is still thinking of Jack; which really does matter. Even seeing a stranger stop by and visit and see his smiling face somehow makes me feel better. When someone comments on my blog I know that another person has gotten to know Jack or see him and it makes a difference.

 During Jack's stay in the hospital and after it was disappointing if not heart breaking to find out who your real friends and family are. Who sticks by you and who avoids you like the black plague, who understands you and takes your grief in stride and who would rather sweep it under the carpet and pretend none of it happened. Its surprising to see some (not everyone) in religion that don't even practice what they preach and are complete hypocrites yet others that embrace all of it and give and give- sadly those are a select few. Religious or not it doesn't matter, what matters is Jack and keeping his memory alive. That's what important to me.
What Ive learned that so many people say call me if you need anything but dont mean it or just dont reach out and do something on their own. Grieving parents dont have the strength to reach out when they are falling , it should be others that extend their arms,  grab hold and catch them before they fall. We were stunned that we didn't even get condolence cards from a majority of relatives- some primary relatives too. Whether, near or far, close or not-family is family and  acknowledging Jack and showing respect was something I thought most would do when a member loses a child but I was wrong.
Of course  when we were going through these extremely traumatic events in the hospital I should have learned.The ones that could have afforded to help us then when we needed it did not.  I was reading a study and took some excerpts from it and the hard lessons some families learned about others when they lost a child.Thanks to all who helped me in Jacks time of need and to those who are helping after.If you stop by my site say hi to Jack, it lets me know he is seen and that for a second in someone elses life he has even been thought of.

excerpts:
A Neglected Majority:
Parents Bereaved by the
Traumatic Death of their Child

by Ronald C. Oliver, Ph.D., BCC

One harsh example from a recent interview comes quickly to mind. A couple of months after her baby died suddenly and unexpectedly the mother called a close friend who coincidentally is a psychotherapist. After bearing her soul the friend-therapist responded, "Listen, shit happens. You're going to have to get over this." The "friend" then ended the conversation. Mom was crushed. The call for help had been rejected and she felt both discounted and humiliated and even less eager to ever share herself again. Bereaved parents too often are compelled to separate themselves from anyone who imposes unrealistic expectations on the pace of their grieving. Often the only people who understand are other bereaved parents. In the presence of each other they extend grace to wonder, get cussin' mad, cry—all without any admonition to get over it.

The erosion of the support network can be a deceptive process. Supporters can feel like no care is required because they left with the parent the invitation, "Call me if you need me." The truth is that few of us in our pain will ever do that and even fewer parents possess the will to call for help at a time when they are emotionally depleted and filled with the temptation to withdraw from all but requisite relationships. In the care of bereaved parents, the initiative for care always rests with the supporters.
I recently interviewed a couple whose teenage son had died four years prior. The couple had been very active in their church—both held positions of leadership. After their son died in a freak accident, church members poured forth support—meals, calls, people in the home—for about two weeks. After that, virtually nothing. They stopped going to their church, no one called to see why. When church members stopped by the father's office at the bank where he worked as a vice-president to ask him when he was going to come back to church he shared with them how angry he was for being abandoned by them. Nothing changed. One day dad came home glad to see the youth minister's vehicle in their driveway. Dad told me what he thought, "Finally someone has come to check on us." As it turned out, this minister had stopped by because he wanted some advice because he was facing a surgical procedure similar to one undergone by this father. The father complained, "He never once brought up my son. He never once asked us how we were coping." These parents rejected all religious communities because, right-or-wrong, they felt rejected by what had been their religious community.

Dear Friends - written by Eloise Cole
Dear Friends,
If you were to ask me to measure the love I have
for any member of my family,
I would be hard pressed to answer.
Surely my love is higher than mountain tops
And deeper than the oceans
And broader than all the deserts in the world.
So too is my love for the baby who has died.
How can I be asked to pack away mementos and memories
and not speak his name?
He is and always will be a part of me.
No one can crate the depths of the ocean,
The breadth of the deserts,
Nor can my love be boxed and carried away.
Dear friends,
Please do not set limits on my grief.
Neither my love
Nor the depths of my sorrow can be measured.
I am unable to heal on a timetable set by another.
Weeks and months have no meaning
when set against the measure of my love.
Walk with me please, this difficult road of recovery,
I promise you I will heal,
When I have grieved enough for me.

I love you Jack my baby,my piglet my MR. You are the best part of me.Jack and Mummy forever.


Thursday, 12 May 2011

Crazy Questions : Silly Mummy

Jack everyday I contemplate "Did I do the right thing?" I think its a question I'll be asking for the rest of my life. As your mother I feel I should have done anything to save your life even if it meant putting a gun to their heads to make them keep you on dialysis and find a way to save you. Then the other side of my brain kicks in, the side that saw how much pain you were in and it tells me it wasn't right for you to keep going like that. I always ask myself were you struggling to live for me or for you? The nurses said it was miracle that you kept trying with the massive and severity of your medical issues and that it was because I kept asking you to keep going. Even in the hospice you stopped breathing a few times and every time I begged you not to leave me alone,then you would come back. All I could hear was that pain medication pump, it was pumping and pumping with what seemed like enough meds to drown an elephant. I know you were in pain, you looked like a mad scientist experiment and by that time you were trying  extra hard to breathe - but, but........
A lot of people are able to put these thoughts out of their minds and say "what done is done. That it was inevitable" but I cant. Ugh!
I have fantasies all the time too. Some about dying (no I'm not suicidal) but just so I don't have to be here without you and others about getting pregnant again in hopes that it would be you. I would of course love any child unconditionally but still I wonder, could you come back to me that way? Is your will to live stronger than science itself? Its like I have been split in two. There is rational me and irrational me.  One side is looking toward a different future and the other side is in the past and trying even still to change it.





I am always thinking of you my piglet, Your silly hair, funny hand gestures and the weird leg positions-you loved to splay them out so funny  -oh you were sooo silly. Your Great Auntie  misses your piggy nose and the chubby cheeks you had when you were born. I wish I could smell you, hear you, kiss you... Mummy and Jack forever

Tuesday, 10 May 2011

Crazy is the norm

Your room remains the same Jack. Its like every day I'm waiting for you to come back. I always meant to mail out cards with your pic and thank you notes to those few that sent us cards but I didn't. Somehow it makes all of this seem to real, maybe one of these days I'll be able too. I keep your urn close in your bassinet, sometimes I put your urn in the swing or on your change table and I never go out without it. Its very portable, a perfect little heart just like I wish you would have had. Sometimes I convince myself that your will to live was so strong that you will come back to me. That you will find a way. No matter what my beliefs I still hope. Maybe because you put up such a fight to live I think if anyone could do it you could. I even wrote a poem

 Jack come back
I ask you every night and day
I know the nothingness cant make you stay
you were special with a will to live that was so strong
so I wait for you my baby; hopefully not to long
there is nothing that could dissuade me
as I know in my heart that Jack Wilbee
yes Jack Wilbee
come back to Mummy

 I know silly Mummy, silly like Jack but I'll never stop asking anyway.


ps thank you for the flowers that you Daddy and Baby Squirt got me for Mothers Day. They are beautiful. Daddy is being so strong like you. He is my rock and he would make you sooo proud.  I miss your tongue, your hair and your silliness. I love you piglet. Mummy and Jack Forever

Monday, 9 May 2011

Belated Moms Day

I would like to thank Jessica "Aiden's mom". She was a caring mother that comforted us while we stayed in the PICU. Jack loved his gifts and his giraffe keeps his urn company to this day. I am glad that Aiden recovered and is doing well and I'm sure he is growing and growing and growing. Happy Belated Mothers Day to you.
Happy Mums Day to my mother in law as well. You have been a pillar of strength and support through this hard time.
I cant believe how many blogs Ive come across and how many families have experienced baby/infant loss. It is a world I knew not existed before and wish I still wasn't a part of. I am thankful for those who didn't sweep it under the rug or dismiss these experiences as taboo. These blogs have helped me realize I am not alone, there are sooo many others that have lost their baby to many things, some that are just going through the motions like me and others who have come back to the living. I haven't gotten there yet but I have seen a glimpse of the path and that's a start. Happy Belated Mothers Day to all the faces of loss.

A line from an old song goes round in my head a lot by Sinead O'conner. Jack, nothing compares to you. I miss you. Jack and Mummy forever

Mothers Day



 Today was hard like everyday for me but worse. I went over all the what ifs again in my head even though I know I shouldn't. I am sorry my baby. I feel like I failed you. I knew your surgery should have been done sooner, I knew it in my gut, I knew something else was going to go wrong before you had the heart attack, I knew it in my gut. I should never have listened to other people no matter how smart they were. To this day I still wonder if I should have fought with them tooth and nail.. Would that have saved you? I know we did raise hell in there harassing the docs and nurses but I keep wondering what would have happened if we had have fought to get the surgery earlier. I don't know maybe the outcome would have been the same or worse. I often wonder the morning you had your heat attack; if I would have seen it coming had I been there earlier. I wonder how long you were showing symptoms leading up to it before they noticed you were turning blue. I have so much anger still at them and at myself. So many different things went wrong it boggles my mind. I say it again and again but I will say it once more "I'm so sorry my MR."At such a young age you fought so hard for your life overcoming one infection or complication just to get another. I have never met anyone like you with such will to live and such strength. You are my hero, my superman.I wish that we all could have been your hero too.

Tuesday, 3 May 2011

To Jack: your kitty




I still am lost without you my baby, or should I say lost in you. 24/7 I am  thinking of our life together and missing you. I don't want to think of mothers day, I was so focused on being your Mummy that I feel future less now, you were my future. Daddy misses you, he jokes about what you would have been like and all the silly things he was planning to teach you to embarrass me in public. He was looking forward to teaching you how to drive on the back roads of course. He says you still would have been a better driver than me. Your kitty misses you, she looks for you and she still sleeps by the bassinet where your urn is. I remember the fights you two would get into when lying next to each other and it still makes me laugh. How I would have to untangle your hands from her fur, oh how much you loved her fur. You would grab it and laugh and talk to her and then pull it a little too hard, Mummy was always watching that your play didn't get to ruff. Daddy brought home baby Squirt while you were still in my tummy. She was just a little baby like you but her Mom had abandoned her, she was starving,brain damaged and Daddy knew she would die so he brought her home. The vet didn't believe she would live but with meds and bottle feeding she grew outside while you grew inside. You were so much alike with both your cross eyed looks and silly hair. I miss hearing your squeals of excitement when you had fist full of her fur, she looks for you my baby and I look for you too. Mummy and Jack forever.

changed the title of my blog in my link

still figuring out this whole blog thing, changed my link without knowing it cancelled out the other one,new link is http://myonlybabydiedmar32011.blogspot.com/