Grieving mom of Brendan Bjรธrn & devoted mom to D; Writer; Disability Advocate. Former Carer, School Counselor & Child/Family Therapist.
#LongCovid
since 2020
My latest piece. Today is Brendan Bjรธrn's birthday. He would be 20 today. This piece is about breakdowns and birthdays; moments and memories; moving and making decisions. Thank you for taking the time to care enough to read it.๐ Happy birthday, BB ๐
Brendan Bjorn, my beloved, beautiful angel boy, passed away this morning. His brother and I were by his side, holding his hands. Our hearts are shattered. I will never be whole again. Fly high with the angels, my love.
As I walked down the hallway from my bedroom this morning, this was the first sight. They don't tell you the pain isn't just emotional. My body is in pain. I can't breathe at times. Crying until I get sick. My heart broken, ripped out. My strength seems gone. Brendan Bjorn ๐
This Saturday is my youngest son's 12th birthday. We'll be spending it at home in continued isolation, just him, his older brother who is medically fragile & myself. Would love to see some kind messages left for Declan from around the world. I'll show him on Saturday. ๐๐
Brendan Bjorn, my beloved angel son. Get me through today. Let me be strong enough to do you the honour you so very much deserve. Walk with me always. With Declan, too. It's so dark without your glorious light. Help me see it again. Remind me that today isn't goodbye. Forever ๐
I say this gently. Please be mindful of telling a grieving parent of a disabled child that "at least he (or she) isn't suffering anymore." By far, the vast majority of his life, my son was the happiest soul that you could ever meet. He radiated the purest of love & light.
#grief
Today marks 7 months since I lost my eldest son, Brendan Bjorn.
The pic is from this day in 2016. How desperately I miss him! Forgive my grief-filled tweets of him during this 1st Christmas without him since 2004. I know I was blessed to have him for 17yrs & 7mos, but it hurts.
My time capsule narrative for the Irish census. Forgive the awful handwriting. Arthritis in my hands doesn't allow for lovely penmanship anymore. Ah, well. Point made, I hope. May 2122 be a damn sight better!
#Disability
#carers
#unpaidcarers
#Census
Tonight I finished writing the eulogy I will (attempt) to give for my first born son, Brendan Bjorn, on Friday.
A son I fought so desperately to keep alive for 17 1/2 years.
There are no words to describe this nightmare. This all-encompassing pain.
I've experienced a lot of pain in my 56 years, but absolutely nothing comes anywhere close to watching my first born, beloved son, for whom I fought relentlessness to keep alive & receive the best care for nearly 18 years, slowly slip away before my eyes. My heart is destroyed.
Repeating myself, but I'll once again say that the victim of rape should NOT have to give up anonymity just so the rapist can be named. Once convicted, the name of the rapist should go into a publicly accessible database. Let the victim remain private. This law needs changed.
Blรกthnaid Raleigh, whose rapist Jonathan Moran was jailed for eight years, has said it was important for society to have his name and his face out there
Palliative care nurse has now come and gone. Subcutaneous pain relief pump placed. I remain right by his side, showering him with gentle caresses and words. He's asleep now as I write this quick update. Brendan Bjorn ๐
Brothers.They haven't seen each other in 2 weeks - the longest time ever apart. Just look at them tonight. They need each other. No one can tell me that love isn't a powerful healer. It is. It absolutely is โค
One of Brendan Bjorn's school nurses texted me this morning as school starts to say the school is missing "the big man" & to check in on me. A beautiful text to get. This would have been his last year of school. How I wish I could have taken just 1 more 1st day of school photo๐
In the post today. Pardon my language, but how f*cking dare you
@welfare_ie
@HHumphreysFG
Yes, I collected the mere โฌ208 the week my 1st born son died, thinking pymts went on for 6wks. This demand letter disgusts me
@AnneRabbitte
Absolutely pissed off & now sobbing. Fkn hell.
Just a quick thank you to all of you who have left such wonderfully kind messages of support & sympathy. I will read them all in the days to come, but for now, I've used my last bit of strength yesterday at Brendan Bjorn's funeral. Just know you've all lifted me up this week. ๐
17 years ago this month. The time went by all too quickly, despite the many challenges along the way. What a journey he took me on. I was blessed to have him as my son for 17 1/2 years. I'd do it all again, if I could. Brendan Bjรธrn ๐
Last Sunday, Declan & I had some professional photos taken w/ Brendan Bjorn. Just looking through them now. Tears streaming. Many thanks to
@NikkiStixPhotos
. D & I will treasure these forever. And love n thanks to my dear friend
@TheNetEditor
for arranging it all. ๐๐๐
Today my baby turns 14. The excitement he has for his birthday is markedly different this year; the first without his big brother Brendan Bjorn, the loss of whom is of course still totally raw after only 6 days.
Declan - It is now he who keeps me going & gives me reason๐14๐
I woke up this morning aching for Brendan Bjorn. I wish he was still with us and we were still in our house in Ireland and nothing had changed. But everything changed, didn't it? I miss him so desperately. I can't put it into words. ๐
He's been on my mind constantly today. It's been one of those days where my heart aches beyond measure; where I just want to kiss his soft cheeks again, look into his soulful eyes & to see his beautiful smile. I miss you so desperately, Brendan Bjorn.
Postman just knocked at my door. Stood far from door. Said if I need anything, to ring local shop with order and he'd collect it and bring it to me. He didn't even know I was sick. Now THAT did my heart good. ๐
What I wouldn't give to be able to hold you again, my beautiful, precious son. Evenings are the hardest for me, missing all the snuggles, kisses & laughter as I got you ready for bedtime. How you so loved that time of our routines. Just to kiss those cheeks again. ๐
#BrendanBjorn
How can it already be 3wks since you left us? It seems just the other day I was holding your hand, running my fingers through your hair, hearing your laughter & seeing your gorgeous smile & the love in your eyes. I just want you back. I'd do it all over; all 17yrs ๐Brendan Bjorn
This morning I collect the ashes of my beautiful Brendan Bjorn, my 1st born child, and to pay the costs of his funeral. How do I do this? ๐Thank you to everyone who helped me cover these costs & to buy this special urn.
To the trolls who came out yesterday, do kindly fk off.
Some time out of the house for his 14th birthday today. Brought Subway sandwiches to the beach and finished just before the rain got us๐ GP rang while we were there. BB's medical death certificate ready to collect. Reality couldn't be escaped, but we did try ๐
Exhausted. Trying to keep my eyes open. I know if I fall asleep, I'll wake up to it being the day of Brendan Bjorn's funeral. Completely illogical, but that's where I'm at. I don't want it to be THAT day. I want to run from it. I want to wake up finding it was just a bad dream.
#NewProfilePic
Happy 18th Birthday, my beautiful Brendan Bjรธrn, 137 days since you passed๐
May the other angels sing to you since I cannot. May they shower you with the kisses I cannot. May you want for nothing where you are. May you be dancing & laughing, especially today.
I have to sign off for the day. The weight of the world's troubles is just too much to bear on top of my own right now. All I want right now is to again kiss those cheeks, hear his laugh, feel his lovely thick hair. It would make my world right, but I can't. Brendan Bjorn.
My son in secondary school will always carry his mobile phone with him at school. It will be in his bag and turned off, which is what the school requires. BUT, he has it available should he need to reach me before or after school or even during school if he must. End of.
I'm undergoing some medical tests today and, to be honest, quite nervous about it all. Would happily accept all the good vibes or lit candles or prayers or whatever it is you do to be sent this way. ๐ฅบ๐
My heart is so heavy. I can barely stand to walk by his room now. I often won't look. My mind is spinning. I have to think ahead, I've responsibilities, but I can't think straight. Time for a walk now that the rain has stopped. It's all I can do at the moment. ๐๐ข
Have just cleared off Brendan Bjorn's bed to ready it for pick up tomorrow along with his wheelchair. The sparkly silver angel at the foot of his bed. The photo of him & Declan. His 17th b-day sign I made. His special bright green wheelchair. This hurts terribly. It's too real.
7 weeks ago today, I lost my beloved son Brendan Bjorn. Today his brother and I sat amongst friends sharing a fantastic meal in a beautiful place. BB was with us, I've no doubt, as we talked about him. Every moment my heart aches for him, yet today was a good day. ๐
I'm finding that for me one of the hardest parts of grief is the loneliness I also feel. No family or close friends around that visit, let alone call. I don't think people realise what that's truly like, knowing no one will catch you if you fall; to be so alone in the world.
The moment I have been waiting for: Brendan Bjorn in his bed looking out his window in his forever home. He's been smiling and laughing since we got home. My heart is now full โคโคโค
#HappyTears
#BungalowForBrendan
GP & Palliative Care Nurse just after leaving. They've now prescribed low dose morphine to help Brendan Bjorn with the pain and discomfort he's having. More advanced plans discussed, too. There simply are no adequate words to describe what I feel. ๐
Facebook memory of the day, this from 10 years ago. We were poolside at a resort where we were holding the annual conference for CMV-affected families. It was a great day. He's so beautiful. Gone 6 weeks tomorrow. The pain of this grief is overwhelming. ๐
Very hard day for Brendan Bjorn. Continuing GI issues even with the new med so back on dioralyte. Also had seizures so used some rescue med which gave him reprieve. He still managed smiles in btwn it all. I love him so deeply, so completely. My world is crashing down around me.
I keep looking up at the clock, wondering if it's time for Brendan Bjorn's meds.
I keep hearing him down the hallway in his room.
I keep panicking when I don't hear him.
I keep thinking in the silence that the movie on his TV has stopped and I need to go put on a new one.
My latest piece. "There is nothing more I can do. My heart is heavier today than I think it has ever been. I now know that this is what it feels like when there is no more hope."
So, THIS is me today! I may only be 6% Irish DNA, but as of today I'm 100% an Irish citizen! ๐๐๐
What a long awaited and exciting day!!!! ๐ฎ๐ช ๐
#IrishCitizens2022
9 months ago this day, I watched my eldest son struggle to take his last breaths. I listened to his chest with my stethoscope. Silence. Then I screamed. Repeatedly.
9 months today. I'm forever changed. Half alive. Lost. Wandering. Seeking the path forward.
๐Brendan Bjรธrn๐
Laying in bed watching videos of you. I had to hear your laughter and see your smiling face, excited as you watch Finding Nemo for the millionth time. My beautiful, precious angel boy, I just want you back. I love you forever and ever, Brendan Bjorn. I'm lost without you. ๐
Facebook memory of the day is from 10yrs ago, 2012. Brendan Bjorn's school photo. I've been in a deep wave of grief the past few days. I suppose being sick doesn't help. My heart is in such pain, aching, just wanting him back; to touch that beautiful face again. Nearly 6mos now๐
5yrs ago, June 2017, my son Brendan Bjorn (RIP) was put on the list for an "urgent" spinal fusion. He waited nearly 17 months for that operation! This was him the night before the op. The wait left him with permanent damage. So much needs fixed in Irish health & disability care!
The video of one of the Irish soldiers struggling near his overturned vehicle is making the rounds on Twitter. Please show respect and do NOT retweet this. I'm appalled to see some high-follower accounts do so. Respect the families. Don't retweet it.
My latest piece and probably last one for awhile as I take every moment I can now to sit at Brendan Bjorn's bedside.
For the last time.
#disability
#carers
Dear everyone out there buying everything left in the shops, I've just received an email from Tesco re: my home delivery tomorrow stating I'm likely not to get all I ordered due to lack of stock now. I can't go to the shop, like many others. Please stop & think of others!
On this day in 2017. My beautiful Brendan Bjรธrn. My first born child. My dream come true. In just 18 days, it will be 1 year without him๐ Every single fibre of my being just wants him back. My angel boy who taught me what truly unconditional love is.๐
Just a reminder that across Ireland tonight there are 100s of family
#carers
like me who work around the clock providing nursing-level care to literally keep their loved one alive. Often in pain, with health conditions of our own. Often with no help or respite. Don't forget us.
After a decent enough day, I began sobbing uncontrollably last night as I started to fall asleep. Awful images in my head started it off. Fell asleep after about an hour, exhausted. I don't want to remember the bad. Grief truly comes in waves. 2 weeks tomorrow. Brendan Bjorn ๐๐
Last day of second year so took him out for a late lunch today. We smiled. Brendan Bjorn would have wanted us to. He would have been happy for the drive with us. We miss him desperately. We will keep trying to have moments of smiles in between the tears.
Just gotta say, if I was the mother of one of these boys who are now likely facing criminal charges for their sh*thead, violent, behaviour, suing over the CCTV footage would be the last thing on my mind. Parenting anyone?
I had a most open, heart wrenching yet love-filled talk w/ my younger son yesterday eve. about the journey ahead with Brendan Bjorn. Many tears shed on both parts. He was incredible. "He's had a good life" he said of his big brother as we talked. My heart aches with love & loss.
I never saw Brendan without a smile and a twinkle in his eyes. His joy was ever present. He was full of love and shared that love across the world. Hs smile made others smileโฆhe made this god awful world a more beautiful place. RIP beautiful boy.
@AddressingLife
Dear antivaxxers, including the 8 of you I just blocked, I vaccinated my life-limited, profoundly disabled young adult son because COVID would kill him. End of. I've turned off comments for last night's tweet. I share my journey to help others on a similar one. So, choice 3 below
Update on Brendan Bjorn ๐
Thank you so very much to all of you who have left such kind, supportive messages. I read them all, though I may not reply.
And to my sweet friend Rhona who sent this beautiful message to me last night. Thank you for being there for us.
๐
Excuse me, what!? She is currently on leave b/c she is "one of six people facing potential disciplinary actions following a report into the death of 16-year-old Aoife Johnston" at UHL, yet HSE promote her while she's still under review???
Speechless. Is HSE rotten to the core?
I know that trolls will be trolls, especially those wearing tinfoil hats, but by God, how dare anyone post "RIP" on my last tweet being excited that Brendan and I will finally be getting vaccinated today! My son has a life limiting illness. I dance w/death daily. How dare they.
Just rang Crumlin. Bed for Brendan is confirmed. Deep breath....time to get ready. Few hours to sort things out before we head down. Spinal fusion in the morning it is. ๐
It was on this day in 2018 that my beautiful son (RIP) finally had his spinal fusion after waiting in pain, often bedridden, on the 'urgent' list from 1 June 2017. There is something terribly wrong with a government that allows such suffering to continue.
#scoliosis
#BackUs
The thing is, it shouldn't have had to come to this. I'm sick of fighting for what is right, decent & humane. I'm exhausted from it all for so many years now. I've years of battles to heal from now, but none more painful than the loss of my Brendan Bjorn.
Just spoke to our GP & left mssg for GI doc. I wish I could find the words to describe how absolutely gut-wrenching it is to watch your 1st born son's body slowly fade as it continues to be unable to tolerate enough formula to sustain him. Hell is on earth. I've no doubt now.
Was at the GP for asthma check today. 2 babies there for their 2 mo. jabs. My heart melted. And it broke. And I longed for those days again. Growing old is a privilege, yes, but it's a bittersweet one after losing a child you cared 17 yrs so intently for. (photo: baby BB ๐)
#BungalowForBrendan
update:
It's actually happening! Next week we will be moving into our forever home suitable for Brendan's complex care needs. It will be a mad week getting ready, so I may go quiet here. I can't believe it's come true. Thank you to all who helped!! ๐โค๏ธโฟ๏ธ๐ก
This tweet is doing the rounds again b/c of the likelihood Harris will be the next Taoiseach. I see my replies to the tweet from the time. My son was still alive, waiting +17 months in pain, bedridden, pressure sores, etc, for an 'urgent' spinal fusion.
I cannot forget. ๐ก๐
A gentle reminder - โby the end of this year (2017) no child will wait longer for a scoliosis procedure than 4 monthsโ. Aug 2018 and children continue to languish on lists. Do you still feel ashamed
@SimonHarrisTD
?
Bottle deposit scheme. Got an email from Tesco Ireland about it saying their drivers can't accept returns, so that confirms those folks who get home delivers (ie: disabled, carers, elderly, etc) need to drive to their local shop to get a return voucher. It's not even cash back.
Before my internet gets shut off w/moving, let me again share this๐photo from 2018, the night b4 my late son's spinal fusion. He waited 17 months on the 'urgent' list in pain, bedridden, being crushed. WHY IS THIS STILL HAPPENING? Shameful!
#BackUs
#scoliosis
@DonnellyStephen
๐ก
3 days until 3rd year starts for my amazing son Declan who just over 3 months ago held his brother's hand while he watched him take his last breath. This year has been indescribably hard for us both. Life from here on out will be centred around him. He deserves the best of it ๐
What I want to see is a change in policy
@HHumphreysFG
. What makes a 24/7 parent carer of disabled adult child any less dependent upon their social welfare than a spouse/partner? It should go for 6wks in this situation too. 17yrs caring work. Now nothing.
Happy 17th Birthday to the amazing young man who taught me what unconditional, true, undying love is all about. My first born son, Brendan Bjรธrn. Words could never capture just how deeply I love you. Happy birthday, my angel boy ๐๐ฅณ๐ฅฐ
I can't explain how disappointing I find parties flatly refusing to work with other parties, especially considering the public voice in this last election. Guys, it isn't about YOU or YOUR PARTY. It's about you SERVING THE PUBLIC.
Brendan Bjorn's palliative care nurse just rang to check in on me. Sobbing mess now, but it sure did help to talk. She helped calm & reassure all the spinning thoughts in my head of could I have, should I have, and what if. The pain of this grief is indescribable.
Moving day.
A day when dreams come true.
A day when a disabled child's special housing needs for his complex care will finally be realised.
A day full of new beginnings.
An end to moving.
Our future starts today.
โคโคโค
Just caught up on the Fairytale of NY controversy. One of the Pogues, the late Philip Chevron, was a gay man. He had no issue with the use of the word in question. He understood the artistic & creative context. (That's from his sister, who is a friend of mine.) So, turn it up ๐ถ
Just walked to PO to collect BB's last disability pymnt which I was told by welfare yesterday would be there. His card shows cancelled just 15 days after he died. Nothing to collect...except his ashes which I was told yesterday would be ready today. Just 15 days. I'm so broken.
The younger son has just left for his last day of 2nd year. Yesterday, Brendan Bjorn's ashes came home to us. This morning I get a feeling I can't explain. Some kind of completion or closure or looking ahead. I can't articulate it. Having BB's ashes home is somehow healing to me.
I know a number of people very ill with
#COVID19
currently. One is in hospital. All of them are triple vaxxed. Most live with a vulnerable family member. Cases in Ireland are on the rise. Please, please, for the medically vulnerable among us, wear a mask in public settings. ๐๐ท
I chose this song for the end of Brendan Bjorn's celebration of life (funeral). Sitting here listening to it again. I feel so lost; so broken and so exhausted. Still in disbelief, yet somehow all too acutely aware as his bed lies empty. How do we move on?
When someone shares their life story in an effort to help others in their situation, it should be respected. The onus of decency should be on those receiving the story. The person who is sharing their journey shouldn't be the one held at fault for doing so.
#advocacy
Or: Paul Reid's car allowance is 3 + 1/2 times MORE than what I get paid in Carer's Allowance in one year for providing 24/7 complex medical, nursing-level care to a profoundly disabled, incapacitated young adult.
Three & a half times more. Just for car allowance. Think on it.