Loss of an Adult Child

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Jackie - what ?   How did that turn so sour?   First of all - your boss doesn’t know what he is talking about - if it were over here he’d be in trouble for suggesting such ridiculousness.  Ignore.  How simple it all is if it’s not your life. 
The bossy miss - well !   That is very serious stuff to falsely accuse someone of putting hands on them and pushing them around.   Are there no security cameras around since you’re working with pharma ?    I wouldn’t know what to do but I wouldn’t accept guilt if I hadn’t done it - she sounds dangerous.   What does your workmates think?
Anyway,  you have enough going on without all this crazy at work.   Take care , Roz

[Jacqueline3]

Thank you Roz, I am so broken right now.   I told them I did no such thing and he ignored it as if it wasn't important, said I was older and supposedly more mature and I should just look past the incident and do my job.   I just sat there, and said nothing, I could not think of a damned thing to say that wasn't ragingly angry and full of tears.... He also said he was speaking to her, that has not happened.  There are cameras but I doubt they have been looked at and were they are, I don't know if it will show anything.  The machine I was assigned to is big and the cameras sit behind it.   Great placement.   I am sick to my stomach this morning.   I don't want to go.  I just want to roll in a ball and forget the world exists.   This girl takes over everything, I have bucked her a few times when she gets in the stuff I am assigned to do, I know she doesn't like that.    The guy that was close enough to see what really happened is a ladder climber and he doesn't like that I have been trained on some of the equipment.  How quickly this job went from one I didn't mind.... it kept me busy.  now it is just a noose around my neck.   I was supposed to do the computer work yesterday, tagging incoming supplies and outgoing pallets... but I was in the managers office for almost an hour.  when I got to the line, Miss bossy pants was doing the computer work and said she would continue to do so.   I am ashamed to say I did nothing, I was tired and sick at heart.  I packed pepcid into boxes and let her rule the roost.   Luckily she did not talk to me.

I have cried most of the morning... missing Garrett and dreading the afternoon.   I have my flaws but I have always tried to be a respectful and caring person.  Losing Garrett has made me bitter and angry that the world is so cruel but I have not been that to others.... I am so tired at the moment Roz,...  I just want my boy and the life that wasn't perfect but was full of love and my children and husband. 

[Mason’s Mom]

Jackie,  I agree with Roz, it is hard to imagine a manager treating you with such disrespect. I wish you were in a better environment. Sometimes it just seems like we live in such a harsh world. 

I got a phone call today,  a woman asked to speak to Mason. I was shocked,  I didn't hear who she was or why she was calling.  I explained that I am Mason's mom and that he had passed away in December 2017. She was apologetic and said they would remove my number from their list. It put such a damper on my day. It just keeps running through my mind,  why would someone be calling for him when it is almost 5 years. We still get an occasional advertisement in his name,  just hurts every time. 

Peace and comfort, 

Carol

[Changed]

Carol,  that would have upset me terribly.   Thinking it through though - Contact information is sold on and Mason would have probably been mildly surprised at the approach- he may have even said so much to you .   That is a pleasant ordinary scenario that we miss.    Having to say out load to a stranger that Mason had passed is shocking - unexpected and sharp.   We have built our defences over these recent years and when they are breached it rocks us .    

How is the family doing now health wise ?  Always our biggest concern, I’m sure. 

I found myself having a proper cry yesterday - just one line I was reading elsewhere took me with it.   I don’t cry like that so much anymore - usually softer tears that I can wipe away .    I think of David all the time and I live with sadness  - it’s a long time to be sad. 

Love Roz x

 

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Angie, thank you for the video link.   How are you coping ?   Your loss is so recent that it is especially kind of you to reach out to others to offer help.  Take care ,  Roz

[Lisa M.]

I was reading online last night the 5 signs that your departed loved one  is sending you A sign that  They are there with you. I'll be darned if one of them wasn't birds.   So all of you who are experiencing birds all around you, Take comfort in knowing that truly is your loved one.  When I read that it made me smile for you. Makes me kind of wish I wasn't deathly afraid of them.😇

[Michael Rodriguez]

i still get calls looking for brian, i was always his reference number .....and it is so true trying to tell a stranger that he has passed ....i also had a pretty rough day yesterday ....was a very stressful day at work ; and when i got home and took a shower , just sat on the porch ,drank a beer and had a good cry for my son that i miss so much .....nikki´s birthday is today and i miss her since i have not seen her for a while and i will not get to see her till december , as they are trying to get pregnant and she wont be able to come for my birthday which were our plans ...... although it has been 16 months , sometimes i just can not comprehend that he is no longer here 

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It’s late here - nearly 1am and I went searching for something in a unit I don’t usually need to go in - it’s got cheese boards and my collection of antique cheese knives and pickle forks !! Lots of fancy party stuff that I don’t need or use - as I say I’ve not been in there for many years -  it also has my sewing boxes and that is where I was heading - I cannot sew so I’ve not needed them either before now.   It was one of those times when I wasn’t  expecting to be upset by anything  but I unearthed a roll of David’s personalised school name tags - rolls of linen with his name printed over and over again.   How I remember my cack handed efforts of stitching them in his school uniforms.   Then I found a bag and inside was some of his action man figure’s outfits.   All those times that were just normal days  -millions of beautiful memories .  Caught me totally off guard.  I have loads of my kids childhood stuff about but I’m aware of them and they are familiar.    This find made me feel so defeated - I had a weep but it’s left me puzzled I think - not sure what about though.  Why it’s so unfair probably.  The usual. 

 I hope you are all managing as best you can.      Roz x

[Mason’s Mom]

Sounds like we are all in bad place emotionally right now.  Maddie is returning to college on Sunday so I am always emotional when she leaves.  

 

 

[Dustins Mom]

2 hours ago, Changed said:

It’s late here - nearly 1am and I went searching for something in a unit I don’t usually need to go in - it’s got cheese boards and my collection of antique cheese knives and pickle forks !! Lots of fancy party stuff that I don’t need or use - as I say I’ve not been in there for many years -  it also has my sewing boxes and that is where I was heading - I cannot sew so I’ve not needed them either before now.   It was one of those times when I wasn’t  expecting to be upset by anything  but I unearthed a roll of David’s personalised school name tags - rolls of linen with his name printed over and over again.   How I remember my cack handed efforts of stitching them in his school uniforms.   Then I found a bag and inside was some of his action man figure’s outfits.   All those times that were just normal days  -millions of beautiful memories .  Caught me totally off guard.  I have loads of my kids childhood stuff about but I’m aware of them and they are familiar.    This find made me feel so defeated - I had a weep but it’s left me puzzled I think - not sure what about though.  Why it’s so unfair probably.  The usual. 

 I hope you are all managing as best you can.      Roz x

Hi Roz - oh my dear 😩 there are so many things that will catch us off-guard and bring us physically and/or metaphorically to our knees when we least expect them. For me it might be as simple as hearing a snippet of a song, a familiar smell, a memory of a laugh we shared, or the one that’s the hardest to fathom, of seeing his physical body lying lifeless on his bedroom floor. I’m sure it will haunt me till the day I die but that’s not how I want to remember my big, sweet, kind, funny, lovable Dustin. I know he’s been reunited with my husband and while that gives me a huge amount of comfort on one hand, it’s opened up the raw wound of losing my husband all over again. It’s been 10 years since he died and I have a perfectly wonderful boyfriend now, but Woody and I were only 21 and 19 when we married and for 35 years were just one of those special couples that everyone wanted their marriage to be like. 
I really want to thank you Roz for asking about me on another message. I so love talking about both Woody and Dustin but most of my friends and family are staying away. I get that they don’t know what to say but I don’t know why it’s so hard to just ask me how I am? I’m utterly baffled on one hand and perfectly content to stay in my ‘healing cocoon’ with minimal contact with the outside world on the other hand. In a strange way I think losing my husband first has made it somehow easier to endure Dustin’s loss. Either that or I’m just completely numb still and it will all come crashing down on me at some unknown point in the future. But with both of them cheering me on I don’t think that’s going to happen. 
With much love and hope for peaceful days to come,

Angie ✌🏽❤️

[NiquesMom]

I think that my friends and family dont want to talk to me because their problems are nothing compared to the loss of my husband and daughter. But now I feel so alone. I think losing my daughter first may have been better for me because Christopher helped prop me back up. Now I have no one to prop me up, but I remember that he helped me on the darkest time of my life and I survived that so I know I can survive this.

I feel like I belong nowhere. Took kyle to a school function last night at the skating rink, so depressing watching all the smiling families. I know they are probably not all happy but they are faking it better than I am.

Kyle was sick this week: fever, nausea. He was sitting crying in my arms because he didn't feel good and nothing was making him feel better. I felt so helpless. Turns out he had the flu. He is feeling better now but I cannot stand that feeling of helplessness. Kyle is the only family.i have left. I know I cannot control what happens and we will call die at some time, but I am so scared if something happens to him. He is the only reason I can keep going.

I know there are good things in this world and I try to see them. But I am so tired.

[Michael Rodriguez]

good morning , i can not imagine what you and danielle have had to go thru , first a child and then your spouse ....feel the loneliness and helpless i guess.   sometimes i wish i could just escape and  be completely alone  but regretfully we can not do that as much as we would love too....because we still have responsibilities ......and a certain individual named kyle is  a huge one.....want it or not we have to be strong for them , that is our mission and we have to find the strength and the will to smile.....i now it is hard to bare with it but ...one step at a time ....that is all we can do 

[Jacqueline3]

Hey, everyone.  It does seem like everyone is suffering right now, like we are not at any other time.  It has been a difficult week.  thought this ugly **** with the girl at work was over but it all got brought into the shift meeting we had and of course I was the bad guy, grieving mother and all who cannot control her emotions and took it out on her co-worker.....They should be glad I controlled my emotions at the moment.  What was so aggravating is this girl stood there and nodded her head not taking responsibility.  I have been there nine months and barely speak, just do my job... but they all jumped on the band wagon.  On top of that... in the nine months I have worked there, this girl has talked about her fiance... never calls him anything else, this week she did... imagine what his name is.... garrett.  I felt like throttling her the first time she said it. now it just comes out of her mouth all the time and she acts like we are best friends.... sorry for the idiotic gossip just tore me apart this week.  

I am so sorry Carol you got the call for Mason, I am still fielding phone calls, emails and mail for my Garrett and each damned time it rips my heart out and I sit and cry.  Virginia, I can only imaging how lonely you feel, there are two other people in the house at the moment and I feel so deeply alone at times.  My heart goes with you and Kyle,

I can also relate to those who will not speak to me, my youngest brother has not uttered a word to me in a year and he lives about twenty minutes from me, the rest of my family is hours away.  People ignore me and if I mention his name, most people change the subject.   I did have a nicer experience at work.  I was buying a drink before my break and I was still really raw,.  My children, husband and grandson's pictures are in my wallet.  I kiss Garretts every time I see it.  Just seems important to me.  One of the older ladies asked me if that was my boy and she asked to see his picture and told me what a handsome young man he is....  It was nice for someone to acknowledge my Garrett,,, as I sit here and tear up again.  My heart is with you all.

Michael, Roz, Angie, Judith, Robert, Lisa and all others who read or post here, my thoughts are with you.

Love and hugs,

Jackie

[NiquesMom]

Jackie, I had a similar work experience a couple months after Nique died. I had just come back from crying in the file room and I asked my coworker what the paper on my desk was. I guess there was a tone in my voice (probably from crying) because she just laid into me. Telling me I am a terrible coworker, never talks to them, just sit with my headphones on. I just kept saying "ok bev, ok." Finally left the floor in tears My manager was out that day, there was an investigation, decided to move the other girl to another team. My coworker jordan told my manager he didnt think I had really done anything wrong and was just a misunderstanding. I just could not believe how mean bev was too me. I couldnt control crying and I thought I was doing ok by going to the file room and then coming back to try to keep working.

I left that job a few months later when we.moved to florida. I heard right before I left that Bev's boyfriends daughter had died and my first thought was "I hope she is nicer to him when its only been a few months."

[Jacqueline3]

Dear Virginia, I hope she is too.   I cannot believe the amount of cruel mean people.   Perhaps they have moved on with their lives and they have every right to but we are now in an alien world where nothing makes sense and one of the people we love beyond this life has been taken from us.  My brother kept accusing me of trying to make everyone feel my pain.  That's what he told everyone distainfully even when I was in earshot.     I would not wish this hell on anyone but a common sense of decency and kindness would not be unappreciated.  We, will all spend the rest of our lives in some form of sadness and varying stages of grief for the loved one we are missing and just want to hug and hold close.  KIndness is sadly lacking these days, if it was ever present... I wonder... I am not a firm believer in the 'good ole' days"!

You are not alone Virginia, we are all here, I know it isn't the same but we have your back.

Love and hugs to all

Jackie

[NiquesMom]

Every since moving into this house we have dragonflies. They sit on the hanger at our front door, come in our patio, yesterday I was able to pet one. This big boy was in our patio this afternoon, the sound his wings made was so loud! Made me think of you guys and your birds

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That looks like a monster - how big was it!! 

I remember decades ago in our garden in England - I heard this noise from the ground next to me - it     opened up a crack and an enormous beetle crawled out ( enormous for uk that is - about apple sized)  it crawled to the fence and up it - he stayed there drying out his wings then flew so slowly away with his wings still audible as he became a dot in the distance.  I think it was a stag and had been underground for years . 

[Jacqueline3]

HE DOES LOOK HUGE VIRGINIA!!    ITS BEAUTIFUL!!   

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[KsMom]

Hi everyone. I found this site through google and ended up way back on Beyond Indigo. I've been reading for months and have wanted to post many times but it is hard to even say what happened as it makes me face the fact that this isn't just a bad dream that I can wake from.

My daughter (and best friend) Kaitlin participated in an online work event last year a week before her 25th birthday in June. The event was drink mixing. I received a fb msg from her after telling me that she believed she had drank too much and was very sick. Her dad's side of the family isn't very alcohol tolerant so we believed it may have been alcohol related illness. Her dad and I took turns staying with her at her house, hesitant to bring her in to the hospital due to covid. She had pains in her neck and chest which we thought were due to the throwing up. A couple of days went by when my husband noticed that K's heart rate on her fitbit read 130. He brought her in to the ER. She sat in the ER for over 5.5 hours before being seen. We could not be with her due to covid and I think she felt others were maybe sicker so she didn't want to raise a stink. I came across discharge papers from that hospital which said that they were ready to send her home but didn't have the final signature. They must have done one last test and rushed her to the Heart Institute. I received a call from my husband asking me to sit down. She was having/had a heart attack. I couldn't believe it. This was a girl who went on an hour long hike just days before. She ate properly, never smoked, and had been a life guard and an avid dancer.

Many doctors met to discuss what to do and they decided on bypass surgery. The surgery was said to have gone well and she was in recovery when she suffered a minor stroke. She was working and able to get much better functioning on the left side and although her speech was a tiny bit stuttery, she was making great progress. She was told she would probably be in hospital for two more weeks. Then the wbc started to climb. They put restrictions on her room. Her breathing got worse and she ended up being intubated and sedated in the ICU with suspected pneumonia. After two weeks, the decision was made to trach. She was able to wake and fought off fevers and infections before being able to work off the trach. Finally after a number of months in the ICU she made it back to the floor and was able to come home on IV medication for her heart which was delivered through a pump. She had continued issues with nausea and vomiting at least once a day. She was in Heart Failure and was due to be put on to the Transplant list once she was able to get stronger, I stayed with her from the end of October until December 22. She had a ICD (pacemaker) installed just in case and was monitored daily for weight and bp changes.

December 22 she had a minor fever so my husband brought her back in to the ER. I was hoping it would just be oral antibiotics and home but she was put on some very strong antibiotics and was throwing up every hour. She was admitted and after a couple of days back in the ICU. Her heart seemed to be getting worse and they informed us they were putting in a device (impella) which would help move the blood through the heart. This is a short term fix that can be used for maybe a month. K was in the SICU and improved to the point that she was walking the hall again. The problem was that the impella fan was shredding the blood cells so her organs were not getting enough oxygen. The impella had to be removed. The decline was immediate. The next option was an LVAD or paritially mechanical heart. She went in to surgery on Jan 18 and after many hours we were told it all sent well. Breathing a huge sigh of relief we were able to sleep. At 3:30am my husbands cellphone rang and I immediately went into a panic. We were asked to come in as she had had a stroke and they didn't know how bad it was. We drove in during a very bad snowfall and were eventually told that the damage was "not conducive to life". We called in my two boys (2 years and 5 years younger than K) and said goodbye.

I am so sorry this is such a long post. I know it seems very clinical/robotic. I think maybe that is a way that I can detach from it emotionally in order to type it out. I miss her so so much. I miss being that happy carefree family. A week after the celebration of life, my husband had a stroke and pseudo aneurysm. After stenting the brain, he has been doing well but I try to be strong for him and the boys and thus feel alone sometimes in my grief even though I know they are all crushed as well.

Again, sorry for the length of the post. I have more I'd like to share about my beautiful girl. Questions for those who are living with this horror. I'll save those for later and just post this intro.

Thank you - Theresa

[Jacqueline3]

Dearest Theresa,

My name is Jackie I am so sorry for the loss of your dear Kaitlin.  I am sorry for all that you went through.   I lost my youngest, my best friend, Garrett from an undiagnosed abnormality to his liver that he was born with.  It will be a year on my birthday, August 30th.  I am having an especially hard time now but this entire year has been a waking nightmare in hell... that never ends. 

I have no specific answer to help but my boy loved to listen to the birds when he first woke up in the morning... I have been trying to make friends with the birds, feeding them and sitting with them ( on a bench my husband made for me so I had some place to sit) as they come to the feeders.  It is where I feel Garrett the most.  I have said it many times on this site and I believe it with all my broken heart that our precious ones are close, trying to help us.

My heart is with you and your family.  It is a hell of a road none of us wish to be on but we are here with you.  You are not alone Theresa.  We are here for you.

Love and hugs,

Jackie

[Lisa M.]

Welcome Theresa.  This is a no judgment zone.  You are free to let your feelings flow.   We are all going through the same thing,  albeit in different stages.   I could not make it without these people.  I lost my son 15 months ago and some days it feels like yesterday.  Although I don't post everyday,  I do read here every morning.    It helps to know I'm not alone.  My heart goes out to you and your family.   Love to all. -Lisa 

[Michael Rodriguez]

i had posted before , but i do not see my post !!!!???? has anybody seen it,,,,,id hate to re-introduce my self to theresa !!

[Jacqueline3]

I have done that too Michael.... my post is gone and I cant find it....  I do not see your post however.   Go ahead and re-post, it isn't anywhere that I can see.  With the lives we live now there can never be too much support...

 

[Michael Rodriguez]

well here i go.....first off , theresa im very sorry for the loss of your daughter kaitlin. i also lost my best friend and son brian 16 months ago ....use to call him B , so everybody knows him as B .....they found a tumor in his back on april 7 last year , mri showed no organs had been compromised , so doctors suggested we remove ir ASAP  which we did on april 12 , he was suppose to be released on april 14, complications arised on the evening of april 13 , it was suggested that he should be put overnight on ICU , i promised him that everything would be ok, he was really afraid he would not wake up , he passed at 11:50am the following morning ,april 14. 

so, as you can see , we all belong in this site where we vent and cry and support each other while we exist as life we all used to know , is no longer there. 

theresa, cry and vent as much as you want we are all here to support you as we all know what you are going thru.

[Dustins Mom]

Hi Theresa - so sorry for your tragic loss. It’s awful that you even have the need to be here in the 1st place, but I have to say this is absolutely the best forum I’ve found for going below the surface and actually learning about grief and how to maneuver these treacherous waters. We don’t talk about or even recognize grief much in our society so it can feel very lonely until you realize a lot of us are what I refer to as ‘the walking wounded’. I’ve suffered two major losses, both sudden; my husband or 35 years 10 years ago, and my youngest of 2 sons, just 3.5 months ago. I wish I would’ve had this information years ago but have only been here a few weeks and have found a lot of peace from both the teachings and the community. 
And please don’t ever apologize for the length of your messages. We all do it. Sometimes we just need to share our stories with other people who ‘get it’. Please know you are welcome here and surrounded by warmth and love. 
Angie ✌🏽❤️

[KsMom]

Thank you all for the replies already. As I used to say to Kaitlin "this sucks!".

We spent every day with one of us at the hospital. It was during covid so restricted to one person, once a day for an hour. While in ICU the first time we were able to negotiate a bit more time. It was/is so hard to think of what she had to go through alone.We did so many things to try and encourage her. We planned a Disney Hawaii trip (she really wanted to go), we made sweatshirts with Team Kaitlin on them to give out to friends and family and then sent pictures in to her, her dad read to her (and family) every night over fb video chat until she fell asleep.

There are so many things that cause me to break down. I've kind of categorized them into: thoughts of what she had to go through, thoughts of what we or others could have done differently to change the outcome (this one makes me feel like I'm losing my mind as it doesn't matter), and thoughts of memories that can no longer be made. I try to keep my mind out of these and think about happier times but it is hard to keep from falling into those last months.

She was so young and yet in many ways very mature. I know she wouldn't want us to be so upset as she apologized to us for being sick many times. Maybe the apologies are the Canadian coming through She used to apologize and say please and thank you to nurses to the point of them telling her, as she was slowly weaning from the trach, to stop wasting her words

I'm sorry for what we are all going through and as others have said, I feel selfish for talking on and on about me... but you did ask for it

Theresa

[Michael Rodriguez]

no worries.....we all experience the "what if´s" ....i do it on a daily basis. i take full blame for what happen to B ...i had the resources to send him anywhere , yet we decided to do it right here as all the doctors told us it would not take more than 90 minutes and he would be home in a couple of days.....and yet here i am ....yearning for my son. we worked together and all my efforts to build this facility was all suppose to be his.....he was already the CEO , i had already relegated that title to him.

i miss my son , i shed tears for him everyday and what else can any of us do ....so all those feelings you have are to us very familiar , and i understand that we will live them for the rest of our days......and honestly , i would not take it any other way .....it just shows how much we truly loved them 

[KsMom]

Michael

Yes regrets. K had complained a couple times about being breathless outside and we assumed it was allergy/asthma related and again....due to covid we figured it could wait. But I know logically that none of us did anything to intentionally harm our kids quite the opposite we would have done anything to help if we only knew. Having been brought up in a very strict christian home I was always taught and told my kids many times...when it's your time then it's your time. (Note that K had many times just in passing said she didn't believe she would live to a ripe old age.) I can't say that thought is any consolation now.

[Michael Rodriguez]

46 minutes ago, KsMom said:

Michael

Yes regrets. K had complained a couple times about being breathless outside and we assumed it was allergy/asthma related and again....due to covid we figured it could wait. But I know logically that none of us did anything to intentionally harm our kids quite the opposite we would have done anything to help if we only knew. Having been brought up in a very strict christian home I was always taught and told my kids many times...when it's your time then it's your time. (Note that K had many times just in passing said she didn't believe she would live to a ripe old age.) I can't say that thought is any consolation now.

i have a daughter a few years older than B , her name is nikki , she lives in portland.....B spent all of dec 2020 between vegas and portland w his gf .....he told nikki that he felt he would die at a young age. she never told us until B had passed 

[NiquesMom]

Theresa, I am so sorry for the loss of your daughter. I lost my 18 year Old daughter on 12/21/17 in a car accident. It happened outside the apartments we lived in. I was home at the time but thought nothing of the sirens, there were always sirens. I know the "what ifs" very well. What if she stayed at work that night instead of trying to come home for lunch? What if we never moved to Denver? What if she had stayed in AZ with her dad? 

I also lost my husband on 6/6/22 after 281 days in the hospital fighting covid. Your talk of the ICU, vent, trach, I understand that pain watching them fight and still ending up losing them.

We here are a pieced together group of broken individuals, but as the saying goes "broken crayons still color."

Hugs

[Jacqueline3]

Dearest Theresa,

I too know the endless pain and guilt of 'what if's".   I have repeatedly berated myself for not seeing that something was seriously wrong with Garrett.  He was suffering from minor, everyday issues.  I had him to the ER several times over the last month because his resting heart rate was a little high.   They kept sending him home saying he was fine.  He was in the hospital the weekend before and they sent him home after 3 days saying he was fine.... I rushed him to the ER a week later, he couldn't breathe.  The liver abnormality had turned his blood acidic, by the time I got him to the hospital it was too late..... They airlifted him to the nearest trauma center and the doctor told me if he could make it 12 hours that was a good sign... he only survived 6.  

I keep beating myself up... How could I have not known?!   In 8 days I will be 61, it is also the day I lost my beloved Garrett.... I have dreams repeatedly that I can save him... he is a little boy playing at the coffee table and I am running around to all the doors in the room searching for someone to listen to what is wrong... suddenly I open one and I know.... it is already too late and he is gone..    

Don't feel selfish Theresa, talk that is how we survive because here, as much as none of us wants to be here we do understand and we have and are still walking in your shoes.  I am struggling to understand it is nearly a year since I hugged my Garrett and laughed with him over one of his corny jokes or done any of the things we used to do.  I have cried every day for the last year, some days it is all day...

It is a humbling and terrifying thought for me.... did our children know?   Garrett told me many times he did not think he would live to see 25.   I feel angry and cheated, I didn't get 3 years.... I am now a crying mess.   I miss my precious son.   I love that boy so much.

My heart is so broken and I don't know how to live this live.   I just exist each day.

Love and hugs to all,

Jackie

[Mason’s Mom]

20 hours ago, KsMom said:

Thank you all for the replies already. As I used to say to Kaitlin "this sucks!".

We spent every day with one of us at the hospital. It was during covid so restricted to one person, once a day for an hour. While in ICU the first time we were able to negotiate a bit more time. It was/is so hard to think of what she had to go through alone.We did so many things to try and encourage her. We planned a Disney Hawaii trip (she really wanted to go), we made sweatshirts with Team Kaitlin on them to give out to friends and family and then sent pictures in to her, her dad read to her (and family) every night over fb video chat until she fell asleep.

There are so many things that cause me to break down. I've kind of categorized them into: thoughts of what she had to go through, thoughts of what we or others could have done differently to change the outcome (this one makes me feel like I'm losing my mind as it doesn't matter), and thoughts of memories that can no longer be made. I try to keep my mind out of these and think about happier times but it is hard to keep from falling into those last months.

She was so young and yet in many ways very mature. I know she wouldn't want us to be so upset as she apologized to us for being sick many times. Maybe the apologies are the Canadian coming through She used to apologize and say please and thank you to nurses to the point of them telling her, as she was slowly weaning from the trach, to stop wasting her words

I'm sorry for what we are all going through and as others have said, I feel selfish for talking on and on about me... but you did ask for it

Theresa

Theresa, my name is Carol and I lost my son December 17,2017.  The way laid out the different thoughts, I have experienced the same thoughts and feelings.  

What did Mason feel and did he know what was happening?  Was he scared?  It is hard to type these words, still hurts deeply. 

What could have been done differently, I wonder how we could not know he had a fatal heart defect?  Even after the state medical examiners report stated the most common symptom is sudden death.  

The memories that cannot be made are so hard and it seems that this one still haunts me the most. Mason has missed his younger sister's graduation, his older sister's wedding and the birth of his niece.  All the life events that we celebrate feels incomplete.  But I find it isn't just bigger events but the small things that can also feel overwhelming, the smell of fresh cut grass, snow fall and the smell of a campfire.  Mason loved these things and so I find it hard to experience each one and so many more. 

No need to apologize, I think we need to share our thoughts and feelings with others who understand.  Even though everyone grieves in their own way the loss of a child is unlike other losses and this group has been a life-line for me. 

[Lisa M.]

I too suffer from the what ifs.   My son died from cirrhosis of the liver due to alcoholism.  I never saw him take a drink.  When I realized what was happening to his body (he started retaining fluid in his abdoman).  He lived in a different city than I did, so I only saw him in weekends.   Looking back I now know why he always wanted to know  when I was coming.   In September of 2020 I saw a slight shift in his appearance.   He always wore big baggy clothes,  but I could see something was changing.   I told him he needed to see a doctor immediately.  He did a week later and from that point on he went once a week to drain the fluid  from his abdoman.   Within a month it was twice a week.  They then told us he had maybe 6 months to live.  He continued to be drained until April  when he was rushed to the ER ( in my city) and they discovered the place he was going to get drained,  didn't take blood tests and they had been draining to much fluid at one time so other elements in his system were completely out of wack.  He was then sent home and we were told anything they did from here on was palliative and if we were given a 3 month time frame.  I got permission to work from home so I worked from his home,  just so I could spend every waking moment with him.    He was still getting around pretty well and within a week he used a walker, he lost so much weight And he was in pain. I remember  him telling me.... I messed up Mom.  I don't want to die.  I was crushed.   He  He took a turn for the worse and on May 9th hospice came in And brought in a hospital bed and wheelchair, medication All the things that we're gonna make him as comfortable as possible. All of a sudden we went from 3 months to he has one week. The following day was Mother's Day and his wife's family all came and they were celebrating Mother's Day and he was just laying there in the bed dozing in-and-out in-and-out. I was angry because they were all jovial and having a barbecue and I'm just sitting in the room with my son holding his hand realizing that that was going to be my last  Mother's Day with him. I sat up the next 3 days with him Right by his side holding his hand. He had stopped eating, being able to use the restroom.  He just slept and we were making him as comfortable as possible.   That was Sunday and on Monday he was still talking to us you know going in-and-out I could see him getting worse. So I told his wife I said if there's anything you want to say you need to do it now because hes hes sleeping more often. So I left the room and she said what she had to say and then I did the same. I told him how much I loved him how proud I was of him And that it was OK to go. I told him that my mom my brother my sister his dad were all waiting for him and it was OK I would be OK. Truth be told I'm not OK. My brother passed from the exact same thing.  Alcoholism runs in our family my son's dad was an alcoholic and so was his paternal grandmother. That is why he hid it from me.  I am so grateful for all of you as I have no one to talk to.  I found a group of wonderful people who truly understand And don't judge. Love and hugs to you all I have to go to work more later.

[Jacqueline3]

Thinking of you all.... reading all of your heartbreaking stories and seeing pieces of my own in each... although what we went through was very individual, some things and emotions are very much the same.  As much as I hate that any of us are here, it is a comfort to have you with me.  Carol, I also went through that barrage of horrible questions... and I think of all the things that Garrett will miss and that I will miss seeing Garrett experience and do. . Garrett also told me he did not want to die.... I told he was not going to die and I was taking him home..... I broke my promise and that just makes me cry and cry.    With August 30 fast coming I have been a mess, thinking that at this time last year, Garrett was here and I had no idea of the tragedy that was about to unfold.   I miss my boy and love him so much.  Truth is you have all saved my life, by listening and understanding.... most people don't....

Love and hugs to you all,

Jackie     

[KsMom]

Wow....tears are flowing as I see what we all went through.

The what if not only of ourselves but of the physicians who treated our kids. Our hospitals here have a system whereby the results of every blood test, xray, mri, ct are posted as processed. It seemed like every morning the whole time K was in hospital we checked those blood tests and either worried and wondered or celebrated every little gain and loss. It was a blessing and a curse. We definitely questioned.....and I still do somewhat,,,,the decisions made by the many physicians from different fields (cardiologists, infectious disease, psychiatry,...). Days were spent goggling med side effects, Her illness completely consumed all of our thoughts. I am sure that many of you who mentioned dealing with a lingering illness went through the same thing.

We watched K go from walking halls to learning how to breath, talk and walk again. She went through some really really dark days where she wanted to give up and we did all in our power to keep her going. This is definitely something I don't wish on any parent....or spouse (Monique I have read what you went through with you husband).

Jackie..My birthday is coming up as well (Sept 5). I think that is what finally prompted me to start contributing to this group. Last year on my birthday I went to my visit with K in the ICU. Strangely the nurses had locked the main door. Eventually one came and asked that I wait a minute. When I was allowed in, I went into K's cubical to find that she (with nurses help) had drawn, cut out, coloured, and taped up balloons to her curtain. Kaitlin handed me a card that she made. It is a bit jiggly in the writing as the initial stroke effected her right side but she wrote happy birthday, love Kaitlin. I'm gearing up for this birthday. I have two boys and a husband to be strong for so I will take a deep breath and try to stay in the present until alone time.

[Michael Rodriguez]

well kaitlin .....it seems as we share the same b'day!!!! im sept 5 also .....and i have stopped celebrating. but i will wish you a happy one when the day comes around......i wake up at 4:30 am every morning to get ready for work....every year , B would be there before i woke up to be the first hug and kiss i would get -----so no B , no birthday 

[Michael Rodriguez]

[Ramona66]

23 hours ago, KsMom said:

Thank you all for the replies already. As I used to say to Kaitlin "this sucks!".

We spent every day with one of us at the hospital. It was during covid so restricted to one person, once a day for an hour. While in ICU the first time we were able to negotiate a bit more time. It was/is so hard to think of what she had to go through alone.We did so many things to try and encourage her. We planned a Disney Hawaii trip (she really wanted to go), we made sweatshirts with Team Kaitlin on them to give out to friends and family and then sent pictures in to her, her dad read to her (and family) every night over fb video chat until she fell asleep.

There are so many things that cause me to break down. I've kind of categorized them into: thoughts of what she had to go through, thoughts of what we or others could have done differently to change the outcome (this one makes me feel like I'm losing my mind as it doesn't matter), and thoughts of memories that can no longer be made. I try to keep my mind out of these and think about happier times but it is hard to keep from falling into those last months.

She was so young and yet in many ways very mature. I know she wouldn't want us to be so upset as she apologized to us for being sick many times. Maybe the apologies are the Canadian coming through She used to apologize and say please and thank you to nurses to the point of them telling her, as she was slowly weaning from the trach, to stop wasting her words

I'm sorry for what we are all going through and as others have said, I feel selfish for talking on and on about me... but you did ask for it

Theresa

Hi Theresa

 

it's been a few months since I posted anything here but I read just about every day.

 

I just had to reach out because you and I have practically gone through a similar process of losing our daughters. My daughter had been having seizures for about 1.5 years every month and it only seemed to happen when she was on her menstrual. In November she was hospitalized for a week because they could not get them to stop. Every month they just seemed to get more frequent and numerous. I did so much research to try and find her a doctor that specialized in this and finally found one but she never got a chance to go. The day after news years this year she was hospitalized with covid. She passed 1/20/22 four days before her 33rd birthday. 

I too think about how she had to struggle by herself because no one was allowed to be with her. I too am a person of Christian belief and pray that I will see her again. She is a beautiful, sweet soul that would do anything for anyone and loved  hanging with me. She was also a wonderful mom to her 5 & year old.

 

I miss her so much. God bless you all. Many hugs and prayers to you all

[KsMom]

Michael....Same birthday, I remember when I was young my birthday being that the school year started again Our birthday tradition here is that each family member gets an early wakeup with singing and then gifts. We have done this for as long as I remember. Kaitlin was the only one of my kids who went away for university (about 6 hours) but she would always video call in and be carried in on a computer to join in the singing. (Even if the lag made for some interesting sounds ) I'm REALLY going to miss that this year.

Ramona66...It is a very lonely process to go through when the "whys" can't be sorted out. It often felt like desperation which I'm sure you felt.

Someone on here mentioned once having a hard time seeing whole families. I remember going into the Heart Institute and seeing primarily elderly people recovering and walking around while my 25yr old was unable to do so. I of courses didn't wish ill toward anyone but it is hard. She felt like an anomaly who my husband used to say specialized in falling into all the "unlikely to happen" complications. (Probability of stroke for her age after last surgery was said to be 8% and debilitating risk even smaller.)

I am a very introverted person. Kaitlin was/is my rock,

A few years ago my husband had to have four stents put in his heart. During this time it was Kaitlin who drove me and helped out with everything. At that time my husband asked me who my one person was (the one other than him I could talk to). It was K. We had a very close relationship. When she went off to university we facebook messaged multiple times a day. She would even message me if she went to a party letting me know how she was doing and that she was making sure to eat if drinking and all was okay.

Our family was heavily involved in theatre and she would encourage me to take on roles in musicals along side her. When my husband's father passed, we were onstage singing together as mother and daughter in the Christmas musical. She was the person we could always count on to help out in any capacity. After she passed, I realized that I would have to figure out my Starbucks order by myself.

Well, after everything with K and my husband, I found my blood pressure was very high, I had gained weight, and was told I was diabetic.  I've used Kaitlin and her struggles (there were extreme liquid restrictions and of course mandated drugs) in order to push myself to exercise and eat better. I've lost 40lbs and my bp looks good. Still need to do bloodwork for diabetes to see. So....I don't do Starbucks anymore. Although I don't really miss the drinks I miss having them with her.

Theresa

[Michael Rodriguez]

4 minutes ago, KsMom said:

Michael....Same birthday, I remember when I was young my birthday being that the school year started again Our birthday tradition here is that each family member gets an early wakeup with singing and then gifts. We have done this for as long as I remember. Kaitlin was the only one of my kids who went away for university (about 6 hours) but she would always video call in and be carried in on a computer to join in the singing. (Even if the lag made for some interesting sounds ) I'm REALLY going to miss that this year.

Ramona66...It is a very lonely process to go through when the "whys" can't be sorted out. It often felt like desperation which I'm sure you felt.

Someone on here mentioned once having a hard time seeing whole families. I remember going into the Heart Institute and seeing primarily elderly people recovering and walking around while my 25yr old was unable to do so. I of courses didn't wish ill toward anyone but it is hard. She felt like an anomaly who my husband used to say specialized in falling into all the "unlikely to happen" complications. (Probability of stroke for her age after last surgery was said to be 8% and debilitating risk even smaller.)

I am a very introverted person. Kaitlin was/is my rock,

A few years ago my husband had to have four stents put in his heart. During this time it was Kaitlin who drove me and helped out with everything. At that time my husband asked me who my one person was (the one other than him I could talk to). It was K. We had a very close relationship. When she went off to university we facebook messaged multiple times a day. She would even message me if she went to a party letting me know how she was doing and that she was making sure to eat if drinking and all was okay.

Our family was heavily involved in theatre and she would encourage me to take on roles in musicals along side her. When my husband's father passed, we were onstage singing together as mother and daughter in the Christmas musical. She was the person we could always count on to help out in any capacity. After she passed, I realized that I would have to figure out my Starbucks order by myself.

Well, after everything with K and my husband, I found my blood pressure was very high, I had gained weight, and was told I was diabetic.  I've used Kaitlin and her struggles (there were extreme liquid restrictions and of course mandated drugs) in order to push myself to exercise and eat better. I've lost 40lbs and my bp looks good. Still need to do bloodwork for diabetes to see. So....I don't do Starbucks anymore. Although I don't really miss the drinks I miss having them with her.

Theresa

God , it is scary how much you and i have in common.....nikki does a lot of improv (my daughter) ......when B passed i hardly ate for about 2 months , i guess my stomach shrunken....i was up to 207 lbs , i am down to 165 ....we used to have ice cold coffee every morning , as he would show up at work around 8:00 am while i am here sice 6:00 am......but , thank God i am not diabetic and my BP is normally 116/ 74

[KsMom]

Michael.....Did I mention after K graduated with a Physics degree she ended up working in the computing field....with her dad

[NiquesMom]

Theresa, your comment of K being the youngest rang with me. My husband was in ICU, rehab and skilled nursing and was almost always the youngest patient. Everyone thought he had a stroke because of all the abilities he had lost. It was hard to see such older people up walking around while he struggled to try to learn to stand again.

Jackie, I know your day creeps closer, just remember to breathe. You have already survived something most people can only imagine. Our children love us and surround us with their love. Garrett holds your hand as you battle to remain upright. Hugs to you.

Michael, I love that photo of B! What a smile! 

Ramona, Roz, Lisa, Carol, Angie and all others on here: I appreciate everything everyone writes, I read everyday but have a hard time remembering everything I have read. I am sorry we are all here but this place is a lifeline when I cannot verbalize to friends and family (or dont want the judgement). 

[Jacqueline3]

Dearest Virginia, Thank you.   I am struggling.  I keep thinking at this time last year Garrett was fine and I had no idea of the tragedy that was about to unfold, god I miss Garrett. my son, my best friend.  He was drawing here.... I loved to watch him draw.  He always showed me his finished pieces.  He is an amazing artist.   I miss him... I die a little more each day...

Jackie

[KsMom]

Jackie

I'm so sorry you are struggling as you approach one year. I guess we can only take things one day/hour/minute/moment at a time. It is hard to feel like we are trudging through life with a deep feeling of sadness and emptiness. I also think about the carefree time before we knew anything was wrong. I have moments where I can smile or laugh with my boys or superficially with others but that sad feeling is always just below the surface. I haven't yet been able to go back to the times of carefree dancing in the kitchen while making dinner or singing along with the radio. These things we used to do together.

I love talking about Kaitlin but I don't know if everyone here feels the same way or if it causes more pain (definitely not something I want to do). Kaitlin also used to draw. I was looking at some of her drawings today. She was very much into dungeon and dragons, and manga. So many of her pictures were cartoon style characters. She also drew costume ideas for Halloween complete with sewing patterns to achieve the look. I was heavily involved in creating costumes for theatre so she would pass these ideas along. If you are comfortable with talking about Garrett what types of things did he draw?

Theresa

 

[Michael Rodriguez]

21 hours ago, KsMom said:

Michael.....Did I mention after K graduated with a Physics degree she ended up working in the computing field....with her dad

well B wanted to go into robotics , but after further discussions (jajaja) he ended up just like his dad ISYE ....industrial and systems engineer ......company was his to inherit.....neither his mom or his sister wants to deal with it 

[KsMom]

Michael

It must be very hard to keep up the business. Due to his stroke, my husband has not been able to return to work yet and is on disability. I'm sure when he goes back it is going to be really hard on him as K's cubicle was within sight on the same floor.

[Michael Rodriguez]

7 minutes ago, KsMom said:

Michael

It must be very hard to keep up the business. Due to his stroke, my husband has not been able to return to work yet and is on disability. I'm sure when he goes back it is going to be really hard on him as K's cubicle was within sight on the same floor.

we used to spend the whole day together and he still lived at home ....he was about to start building his house when all this happened. 

[Jacqueline3]

Dearest Theresa,

My Garrett had a chibi style of drawing but he was a big horror film fan so he melded to two together.   I always was and still am so proud of him because he walked to his own drum beat.  He was bullied a great deal when he was in school, but he grew and while he was not exceptionally tall, 5'7, he was unbelievably powerful... he became the advocate of others that were bullied and would place himself in harms way for the one being bullied, even if he did not know them.  He was an exceptional young man but he could never see that.  I miss him so much, this life is so alien and ugly to me....I just want to wrap my arms around his chest and hug tight and never let go.   

I do not mind if you talk about Kaitlin... I love to talk about Garrett and hear all the wonderful things about everyone's children.  I have three children, my girls are built like their father.... My Garrett was the only one built like me, and he was the only one with my eyes.... only he only had one of them... He had two different colored eyes, one blue and one green like mine...He and I would spend nights laying in the spare room talking about everything from rap music to things he wanted to do to things he regretted doing when he was younger.... we would talk for hours sometimes laughing sometimes crying.....god I miss him....

thank you for listening...

I would love to hear about Kaitlin....

Love and hugs,

Jackie

[Lisa M.]

Everyone......Please do not feel bad about talking about your children here.  I enjoy it so much.  This is the Only place I feel that Everyone really does care and there are none of the fake people that pretend to care.   Our children are still a big part of our lives  and we should be allowed to enjoy talking about them.   I appreciate you all sharing.   It makes me feel like I'm not alone.