To Jack

Now that everyone has gotten to know at least a bit about my special little Mr and what he went through from past posts, I am going to try a new perspective. I may drift back and forth in narratives in my posts, but I'm sure you'll keep up- or not.

To Jack,

I found that with every past post I wrote I was talking to you, "my little piglet". I would have to go back and correct my narrative for everyone else to understand. Even though I don't believe in life after death or that you can hear me at all; I miss you so much I do it anyway. I talk to you all day at home, in between  all the crying so I might as well do it here. I'm probably repeating myself but after almost two months I am still frozen in time without you. I don't know how to live without you so I keep living in the almost five months you were here.  I find myself drifting or as Daddy would like to say "spacing out" for longer and longer as I go back and live in memories of you. I will be doing a chore and then without even realizing drift off into the short past I had with you. I go over everything in my head from your time at home to your time at the hospital. I go over the "what ifs" a lot too in my head even though I cant change it now. My concentration on anything is gone and I am totally lost on you. I loose alot of time that way, too much. I hate going out of the house as it reminds me that your not with me. I no longer get to push your stroller, I am no longer regarded as your Mom by onlookers. Everything beautiful that I see  and hear only saddens me because you will never have these experiences and seeing other kids well that just about breaks me sometimes as I am reminded of a future that you will never have. I think I am going insane without you "my Mr".
  Baby Squirt, your kitty is still looking for you.  You and her were like two silly peas in a pod with the long hair, super long eyelashes and cross eyes.  You didn't cross your eyes all the time like her  though; only when you were about to be fed or get a spongy. It was your " Okay, I want my Yummy now Mummy" look .   I'll drift into that next time, I ache for you my baby. I love you. Jack and Mummy forever

Jack Damian Wilbee :my only baby died sufferring mar 3 2011: Jack's eccentric personality

Jack Damian Wilbee :my only baby died sufferring mar 3 2011: Jack's eccentric personality: "I knew very early on Jack was a very smart little boy, he had very particular preferences which they learned the hard way in the hospital..."

A heart that is broken

Everyday I wake up and my first thought s "my Jack is dead" then the missing starts. I ache to hold him, stroke his hair, mother him and watch his silliness. I yearn for him. I know I am not the only one going through this pain but yet still I feel alone and my heart throbs it hurts literally and a heart attack would be welcome,life has no meaning and everything I look at is black and white and blah. I talked to another  mother who went through very  harsh times as well with her son in hospital, he who went through so much as well. I don't know where she gets her strength but I'd just like to say her "bear" just like my "mister" will always be in my thoughts. Even though I didn't know him I could see he was a very courageous little boy. I find it so hard to find anybody who will talk about Jack or what he went through,  I wish like most mothers of loss that everyone would say his name. If you do read my posts please comment, please say Jack's name, please see how special he was,please  read his struggles because it shows his strong will and how special he was. Sadly I wish I didn't even have to ask others to do so but like every mother of loss I do. Yes we want our children known to all like they were superstars but we have that right. We just want to keep there memory alive. Jack was here on this earth  for short time; but he was here! Every second of everyday I ache for  my "mister" and even though I don't believe in life after death I still cant wait till the day I get to join him in his urn.

Jack your were my sunshine my only sunshine you made me happy when skies were grey
You'll never  know dear how much I loved you, how sad I am  you went away

The other night dear while I was sleeping I dreamt I held you in my arms
When I awoke dear I was mistaken, so I hung my head and cried

Jack's eccentric personality

I knew very early on Jack was a very smart little boy, he had very particular preferences which they learned the hard way in the hospital, he was not content without his toys, he would not sleep without his own blankets from home and always wanted his "baby baby blanket on his head" he made the nurses laugh and the tongue everyone loved the tongue. We also learned  he liked water sponges to suck on, all the nurses knew that too, they really had to get to know Jack and he was the most talked about baby in the ICU because of his eccentricity and personality. He was such a silly little man at home that made us laugh everyday.I'll tell you a funny story about how silly he was,  After the very first operation before any complications he did pee a little they suspected it wasn't enough  but hadn't told us yet. Anyway he peed a little in his diaper and the nurse took it off, the minute she did he made these weird moaning grunting sounds she says omg maybe I should get the doctor. I said to her no you better put another diaper on him. why she says he just peed I don't think there is anymore, I say those sounds he makes that means he is pooping and he waits because he wont poop in a peed in diaper, oh crap she says to late he pooped all over the bed. He always did that, the minute I took his pee diaper off he would poop, I was waiting for it and laughed when they learned this the hard way.  I would like to thank some of the nurses and one doc that really got to know Jack and understand his silly ways. Dr Andrew Campbell who had so much faith and interest in Jack. Heather the brave and strong who Jack was very fond of. He loved his naked baby time with her and we always called her his girlfriend, Heather spent her off time with us getting us through Jacks passing at Canuck Place and lending us her strength for that I will be forever grateful. Kim the cutie who tried sooo hard. Mary the experienced who caught his bowel perforation before it poisoned his whole body, BJ Jacks third grandmother who cared so much, Jan who took care of me after Jack's heart attack when I was about to fall apart and got me the anxiety meds I needed to get through and James the worker bee who jumped right away and did everything to appease me when I felt Jack needed a suction or a pain med or many number of things I was very demanding because so many things had gone wrong. I am still angry about how messed up his surgery made him and the events that followed but at least these people tried.

The hospital

Jack the day before his heart attack

In the hospital I know he didn't understand me but I always tried to kiss him all better. I promised him "Jack and mummy forever" I am still grappling with what promise should mean now. After the heart attack and severe brain damage I told him if he would just get better I would be happy to clean his bum and give bathes till he was old and grey. When he was diagnosed with down syndrome, Codie and I discussed putting money aside so we could all live in an old age home together and Jack would never be left to fend for himself. Even at Canuck Place we thought by some miracle he would pee, his kidneys would kick in and he would be okay. We never did think that he would die because he tried so hard to live. So many times the docs were shocked he got over one infection then another, when he had the arrhythmia they put a pacemaker in and right after his heart starting beating at regular pace on its own. He was not a candidate for life support but yet they tried anyway because he proved time and again he would get over any complication even beyond all medical evidence many of the docs still believed  he would surprise us all and pee once he came off dialysis. I guess dealing with to many complications at once, his face wound and fungal infection, his bowels, his brain damage, his kidneys and heart just proved to be to much even so he still tried to fight all of it till he was overcome. He truly was a miracle child. It took years for us to even have a baby then against all odds Jack surprised us. My miracle, truly my everything.

venting first I have to get it out before I explode

Everyday I wish for a heart attack to join my son in his urn, no I'm not suicidal maybe I'm not even crazy. I think its natural to have these feelings because I miss him so much. I also have so much anger. Everyone says sorry for your loss or I cant imagine what your going through but want I most is for them to remember Jack or recognize what he went through.  He wasn't just my baby but a humane being with personality and the strongest will to live that I and the doctors had ever seen. He fought hard and overcame so much but to no avail in the end.. I have tried so hard to get my family to talk about him, why is it I and a select few are the only ones who had a memorial for him. Why is it for some of my family who are avid facebook users that his death was never mentioned on their page? Was he not a nephew, a cousin,a grandson, a great grandson and great nephew as well? Some of my relatives said they would fly out but for what we didn't have the capabilities to house them feed them transport them etc...We did not want another "mom" situation where we had to worry about her  (she came for a week after his heart attack )and Jack at the same time while living in the ICU ( we were sleeping in an unused office then) that ended badly with her yelling over Jacks bedside that she was too much of an inconvenience because we could not focus much effort toward her, she then stormed out of the ICU and flew home, she never said goodbye to Jack. She never said goodbye to Jack I cant get that out of my head, the last she did was yell over his bed and storm out.Maybe I'll never get that out of my head. Another memory I cant seem to forget. My brother sent me a book on how to find Jesus. My response wasn't a happy one and so he cut me out of his facebook page. Really are these people thinking at all ? My Aunt which I talk to a lot she is wise beyond her years and the only one who asked for forgiveness says they were trying to help but still the anger in me boils. My sister donated to the Down syndrome society in Jacks name, she was the only one with such a thoughful idea for Jack. Why didn't any of them think of something more to do for Jack like that instead of sending a combined family plant to his funeral. Codie's mom and younger sister held a fundraiser for Jack it was strangers who helped. It was Codie's mom that bought the beautiful inscribed urn ,posted his loss in the paper and covered his viewing room with flowers.Financially I asked my mom while she was with us in the ICU after Jacks heart attack to ask some of our very rich relatives for help she says phone them yourself  Jack isn't there responsibility. Jack was dying and she says well Codie will just have to get a job right now and leave you here with Jack.Anyway rant rant moan moan its over now and they wonder why I don't talk to them, that's why. . I am glad my husband was with me  and I am glad he got to spend what time we had with Jack. He doesn't like to talk about what happened, it makes him angry if I bring it up  I guess that's why I blog he says"I cant be in the place you are. I have to function." I understand that . There is never a right thing to say with this most painful loss but I even now I still get others trying to convince me of heaven and god, its a crutch that I am not going to fall for. As much as it would be make it easier especially on my conscience I only believe in science and fact. I also wish I could believe Jack would want me to go on and be happy but the real fact is he was mentally 3 to 4 months old when he passed, he did not have that capacity of thought all he wanted was to feel better and all he wanted was his mummy.

to let you know

This blog is a little disorganized I'm just learning how to do all this but I wanted it as a memmorial to my son, when its a little easier for me I'll write more about him, he had so much unique personality and character for his age

Why

 I just need people to know what my son went through later I will post more about the precious 3 months I had him at home before the surgery but for now I just need to get this out and make his suffering known to others somehow it seems less meaningless that way. He was my life, he was perfect, my everything, my "mister" that was his nickname. I want to know how people continue living after something like this, I feel so empty I already feel dead and no purpose to continue for he was my only child. If anyone had a similar experience to mine please tell me, I dont want to be alone in the thought of his suffering or what he went through. I dont beleieve in God just to let you know or heaven.

hospital

I wont post the worst pics they were too horriffic just a few from his two month stay in the icu

fast forward after 3 beautiful months Jack's open heart surgery/redone

My child died suffering after two months of pain in the ICU. His name was Jack Damian Wilbee, he died march 3 2011 just 20 min before he turned five months. He was born with Down Syndrome and he was perfect and beautiful with the best smile in the world. He was are only child and were so happy to have him. We were told he had holes in his heart, a defect common with downs children. They said no problem we can fix it, he would be in hospital for 2 weeks after and then we could take him home .

On Jan 4th he went to the hospital at 3 months old to have open heart surgery. Everything went wrong after that, he had every complication there was arrhythmia, his kidneys stopped working from being on life support during the surgery, he survived two infections and a perforated bowel which they fixed by giving him a stoma his bowel was hoisted to his stomach and placed outside of his body where he pooped in a bag.

Then in Feb they told us he was on the road to recovery -go home they said , sleep for a night do your banking. We did. The next morning he had a heart attack; they don't know why. We came in as they were trying to resuscitate him.

After 40 min the doc made a decision out of pure emotion and because of us; he put Jack on life support for five days. It worked Jack came back and was taken off support but with massive brain damage,and also Cerebral palsy. He was awake and could feel but they predicted would not progress beyond this point.The docs think could not see except bright colors and no one knew if he could hear.We were thankful just the same our son was still alive we could still take him home and make him happy.

A week later they took the intubation breathing tube out and underneath all the tape on his face they realized he had a severe allergic reaction. They knew he had an allergy to that specific tape prior to using it. We found that out very early on. The skin had burned through leaving almost no cheek left, it was a huge gaping hole to the bone, he then got an infection in the wound.

He had holes and tubes throughout his body for his bowels , for his dialysis and for his medication and there was nothing left of his cheek he also had dislocated ribs from the CPR. A few days after that they told us his kidneys would never regain function after being resuscitated and his bowels weren't working right. His heart was also failing again. They told us he was no longer a candidate for dialysis, he had too many complications he was dying, they only give dialysis to children that have a great percentage of living until the kidney transplant which is at least 3 yrs and even that you have to qualify for.

  The Kidney Docs all so said his heart surgery should have been done earlier, before he was showing signs of congestive heart failure which was slowly and silently damaging his kidneys. The cardiologist handling his case did not think his symptoms warranted that and also never notified the surgeon. We made him very aware Jack had been displaying these symptoms -heavy constant vomiting, heavy fast breathing-struggling at times for air, pale and not gaining any weight  since November.

On March 3rd in the morning we took him to a child palliative care home, we could not take him home it was to far and his pain could not be properly managed there. He died in my arms 20 minutes before he would have turned five months at 11 40 pm.. It was long, he went blue allot then would start breathing again but very badly. They said he felt no pain and they gave him allot of pain meds but I don't know for sure what he felt and even though he was in my arms I don't think he was aware of it. He kept trying to breath until finally he stopped.

 All this happy child knew was that his mom had given him to strangers who did bad painful things to him, he was 3 months old at the time he went into the hospital and that's all he would ever know. I see his pain and suffering in my head everyday like a horror show. He was my only child and I have no more purpose in my life. My husband and I cant even think of the future when we are just trying to make it through each day. There is nothing left but emptiness and memories of my little misters suffering and his hard struggle to survive. The will to keep going everyday is draining, my heart is broken but still keeps beating and I wish it would stop. I see only what happened over and over in my mind. I see him looking at me wondering why I took him from his home,why I gave him to strangers and why are they hurting me. That's all that goes through my mind everyday.
March 21, 2011 4:20 PM

Jack Damian wilbee

Before I was pregnant while shopping at a walmart I cruised past this young beaming couple who were proudly showing off their newborn. "Isn't he perfect and soooo handsome", they were saying to other shoppers that stopped to look and coo at the baby.I had a peak myself and when they said this I vehemently agreed "oh yes there could never be a more perfect child" but really in my mind I was thinking I've never seen a more butt ugly baby. I thought to myself, I will never be so unrealistic and if I ever have a child I will love him or her no matter what but see him for what he is. That way others wont be rolling there eyes and thinking otherwise.
Fast forward: after a tumultuous 54 hr hour delivery with allot of doctor screw ups we had Jack Damian. He was beautiful, handsome and perfect with a full head of hair. We did not notice anything odd about him at all. The pediatrician came in to check him over and after taking a very quick look at his face and hands he said to us," I think he has Down Syndrome.Our reply, "bullshit." Yes I'll admit we were educated hard working people with potty mouths. Something Daddy will have to be careful with later when Jack learns his first words. The pediatrician pointed out the indications for Downs. First the different line pattern on the palms of his hands. Codie immediately put out his own hand and said" Well look at mine there not exactly normal every ones are different." Moving on the pediatrician then pointed out his almond shaped eyes. I say, "well look at our eyes they are somewhat slanty" Codie did have allot of similar features with some Downs adults we had seen on tv. Small hands and feet, flared nostrils and sturdy body type. What my mom calls a stocky stature. Besides we didn't know who Codie's father was. So we explained to the pediatrition "maybe he has some Asian heritage". He said he would run tests anyway but we had already put it out of our minds and forgotten about it before he even left the room. Our child was perfect.
Fast forward to doomsday. I call it that because of all the disastrous things that happened to us that day. It was 4 days after we were released from the hospital. We were at Jacks first doctors appointment with the maternity follow up clinic. "Jack looks good guys even though his weight loss is a little fast but not that abnormal for some children after birth," our maternity doc said. "But Michelle your very pale".. "yes well I'm still bleeding allot but isn't that normal after birth?" I replied. "Sometimes," she said "but lets set you up with a visit to the obgyn at the hospital jut to be sure." She knew more then she was letting on then but I think she didn't want to panic us. "OK"I said "When will that be?". "Well I'm going to set it up for right now since your already out with the baby just scoot on over there after we finish up." Hmmmmm yeah we didn't clue in.
　
Fast forward: I've unknowingly been hemorrhaging the whole time. The docs are astounded that I'm walking and talking considering Ive already lost half my blood supply. We are waiting for me to get hooked up for more blood when we get a phone call on Codie's cell. He listened "Uhuh, ok," then he hung up. I think he wasn't going to tell me. He was trying to keep an expressionless face but I could always read him. "What is it?" I said a little loudly. He just spit it right out" Jack has Down's Syndrome". So I'm sitting in a hospital room bleeding to death and my world comes crashing in. Immediately before he even got out the last syllable "ome" I break into a loud grieving wail, a sound that I didn't even know I could make. Heads turned and people looked but kept to there own business as I started to ball my eyes out. We didn't really know much about Down's Syndrome then. My only thought was that we wouldn't have a normal life and Jack would forever be 3yrs old. Totally not the case at all -Downs children are developmentally delayed yes but they grow up and progress like any other child. With hard work and encouragement from there parents they can still become a working and functioning member of society. They are amazing beings that Ive come to realize will show me forever a world where innocence is not lost and beauty always remains to be seen all around. The way they see things is so different and so amazing, its a gift to be privilege to that.
Anywhos at the time I cried and cried grieving for the planned and expected future that I had lost. Codie was strong and really didn't act like much had changed, he never has even since then. My grief was short lived and after one good cry I looked into Jack's face. The thought of Down's Syndrome as a bad word was wiped out and all I saw was pure perfection.
  I was admitted and operated on and in the hell hospital for a week or more until I was feeling strong enough to fight to get out. After all I had perfection at home and did not want to miss a minute of it.
I understand now what those parents in Walmart saw and what perfection and beauty really is. I now truly understand the meaning of unconditional love.
Fast forward : Jack is now 3 months old and has open heart surgery in a week, Down's Syndrome children often have heart defects and other medical problems which to me is the only scary thing about the diagnoses. We will be away from home for pretty much a month. We are financially struggling to survive. With Jack's vast amount of medical appointments and special medical care and around the clock surveillance by us, we take shifts- my husband can no longer attempt to work his vocation as a long haul trucker or have time to pursue any new career for that matter. Life is hell and stressful but at least through it all we get to revel in the perfection that is Jack. Who through all his fighting to live stays extraordinarily happy. Who cares what others think he really is soooo perfect and soooo handsome . There could never be a more perfect child.

JACK