My kid is very disabled after having an AVM rupture. This is the year he would have graduated from high school. I’m getting graduation cards from friends touting their kids’ graduation, how proud they are, where the kids are going to college. Folks in my circle don’t know this - but I’ve been fighting depression hard for years because I gave everything I had, but I couldn’t help my kid. Made the best medical decisions I could, and spared no expense. But if you have a huge inoperable AVM there’s simply no way out. Although it was impossible medically to beat his AVM, the bottom line is I failed as a father because I couldn’t beat it. I realize that the previous sentence on one hand does not make logical sense, but it is nevertheless true.
I hide depression really well, am successful in my job. I wonder if how I look fine outwardly makes friends not appreciate that proclaiming their kids’ successes and bright futures is like a dagger. They’re doing nothing wrong, probably have no idea. I do a good job keeping my depression about my kid’s present and future tucked away from an outward facing perspective, and I function fine all of the time as far as anyone knows, and almost always when alone. But the darkness is always there, and getting a text tonight about another happy grad - these are times it gets loose & takes over. Will allow feeling like garbage tonight once everybody is asleep, then put it away in the morning.
Whine fest over. Apologies, but a brief anonymous interlude of honesty seemed like a good idea.
Would everyone who has felt in some way or some how like DB struggles, signify by raising the pen closest to your computer in your right hand? raises hand with one pen
stops, picks up 6 more pens and raises all of them
I have cut way back on the “incoming” social media that I use. I use that to keep up with a few close friends, family, church people, news and commentary I trust and that’s about it. That is way less than it used to be.
And yes, I am not the Mr. Optimist that I used to be. Whether it happened to a family member or to you, this thing is a difficult and managing the emotional toll that it takes is also very difficult.
Turns and addresses the crowd, “Would everyone please repeat after me?”
well im left handed so ill swap my pen over so i can actually write.
while im not a father i understand you thinking you failed before you couldnt help you child. knowing you would take the bullet if you could without a second thought about it. i remember laying in the hospital icu and screaming for my dad because i just wanted him close but they wouldnt let him in because visiting hours were over. ive seen pictures my friends took of my dad sleeping on the waiting room floor. i remember when i was finally put in a normal room he never left my side, i remember him taking the evelator every hour to go find the microwave to heat my flax seed bag up because heat helped ease my pain. i remember the first time i walked in a week he was there holding my arm making sure i didnt fall. as im writing this with tears falling down my face its 430 am and im sitting at work. but i know i could call my father right now and say dad i need you and he would be here in about 15 mins.
im sorry your kid is very disabled because of their avm, but you gotta look at it from the bright side of things. at least you can go in their room and still hug them. im sure they appericate everything you do for them.
life is different post pop as i like to call it, im having to learn and adjust to living life a little different now as well. but i can tell you in the week or so that ive been here, it does help having people to talk to that are going through the same crap and same struggles as you are… helps a lot honestly.
as far as you hiding your despression from everybody thats how i was tought a man needed to be. you provide the best you can for you family and worry about yourself after everybody goes to bed. but you not alone in this you got all of us. (insert high school musical were all in this together right here)
not sure what my point is but something said write all of this because i can feel your pain through my phone.
I recall my son being born and then receiving the diagnosis of hirschprung’s disease and requiring surgery at 6 1/2 months of age to remove 20 cm of bowel, two follow up surgeries, he recovered. The feeling remains of living this. Fast forward to my getting home at 48 post bleed and feeling really down but looking at my two teenagers at the time and thinking, thank God its me and not them. Might sound egotistical but I clearly remember the thought, when I was remembering little else.
I feel what you say, while my situation is very different, the parent connection gives me some understanding and appreciation. You may be anonymous on here de to our virtual world but I see a strength and caring of a parent, a dad, that I look up to. Know that this wasn’t a whine fest, reality never is. Take Care, John.
DB, I know what you mean but this bit isn’t true at all.
Is your son happy? Does he bring love and life and laughter into your lives? Are you proud of the things that he has fought to do or overcome? These are the things to celebrate.
It’s a great thing that the other parents have achieved the more traditional targets for their kids. It is. But it’s not at all relevant to you. You are much better to think about the different challenges that your son has had and celebrate how you’ve got past those.
I don’t have any direct experience to share with you – other than, like John or Kevin’s Dad, I’ve looked after my son when he was tiny and unwell and not settling to sleep. I remember lying on his bedroom floor, freezing cold, late at night, holding his hand through the cot bars until he went to sleep. As it happens, I’ve also done the nagging of the teenage son until he goes to bed or gets his homework done or whatever it may be.
I’ve also got a friend at work (I’ll call him Christian) whose son (I’ll call him Ollie) is in a situation much more like you. Chris has been through the same things as you, though Ollie was born with his impairments, so Chris has had the comparison with other people’s kids (including mine) forever. It has been very hard and I know he had some time off work because he was finding it perilously hard. I mean perilously. However, Ollie has some friends of a similar ability and among his friends he has won awards and that has been good for Chris to be able to celebrate what Ollie can do rather than what he can’t do.
The pain of what he can’t do may always be there but I’m sure it helps to look at what he can.
If I’m perfectly honest, I struggle to talk to Chris about his kids because I know Ollie is in a so-different place than my son, yet they were in the same school year. I don’t think that’s a good thing for me: I’d like to be able to talk to him more. I just don’t know how to start the conversation but I see that as my problem. It’s definitely not his.
The one thing I do know is that Christian is an absolutely fabulous Dad to his kids. He’s a great manager and leader of his team at work – has a great sense of humour and is one of the most thoughtful people I know. I don’t know if being Ollie’s Dad is a part of Chris being like that or not but he’s one of the best guys I know. I’d walk a long way in very tight shoes to help Chris. No failure at all.
Hi.
I am new here. My daughter had an AVM bleed 2 months ago on her 10th birthday.
I read your post and although our outcomes are different, I want you to know you are not alone.
And I am here for you.
I would like to suggest counseling for you if you have not already. I want you to feel better and I think it may be good to let your feelings out more often,
Stay well my friend.
You are not alone.
Joy
Hi
Hi, I related to your story on many fronts and although I have an AVM and 7 aneurysms, it’s my bout with infertility that brings up the most connection. I remember crying for three years when all my pregnant friends were getting there with ease and feeling quilty as hell about their joy. I didn’t want to take that joy away from them, I just wanted the same for myself and it would take a different path for me. I think if you see yourself as wanting the best for your child and respect and honor the grief you experience around your loss, instead of try to appear normal you’ll do much better than you are. I found when my twin sister died, very little people in my life could open their arms and hearts up to my grief. It felt too much for them. Thankfully there were some who could and I did a tremendous amount of my owngrief work via art and writing to pull me through the toughest years. I’m back to grief work now with an inoperable AVM and a long wait for recovery from the radiation. I pour my heart into writing and painting to express all that I feel deeply and I see a neuropsychologist for support when I’m at my worst. I would say the best course for me has always been to pour it out versus suck it up. Find a way to release your pain so it doesn’t build. You have a lot of genuine loss to process. I always found when I let myself cry the hardest, I found hope rather than despair. The light only came out when I was willing to bravely navigate the darkness.
Best wishes to you. Love to you as you walk this path and many more!
@DB20 We are here for you- and this is a safe place to vent. I have been both the patient ( not able to move or talk) and a caregiver. After my CVST stroke due to five blood clots and being in a coma - I got an AVM called DAVF I say for bonus points.
Then two years after my younger sister went to Mexico and got Necrotizing fasciitis and almost died. It was a long recovery for her and she is not the same. I am more like her mom due to our age difference. I wish I could of taken her pain for her. She got cancer last year and we are like WTF this woman has been through enough!
Care taking can be so stressful as well. There are caretaker support groups usually in every area. Your local Aging and Adult services should have a resource list. Its under our Older Act - so federally funded - I am a volunteer now on my local Aging Commission even though I am not a senior but my body feels like it.
It may help to talk to some other parents who are going through it and are not in your current circle of friends.
I recall driving to Stanford for my sister so many times cause after she continues to get MRSA post NF and would just scream in my car.
I am Italian and my dad always jokes that I am his first born son even though I am his first daughter. Even when I couldnt talk or move and the Drs at Stanford were telling my family I had brain damage my dad said thats ok she has some to spare…I was thinking in my brain SHUT UP I need all my brain.
I have made a miracle come back but not the same. But I am so happy I made it through and my sister made it through. I did try talking to a therapist but she just could not handle all my family has been through.
Most people are dense when it comes to understanding that maybe they shouldn’t be talking to you about their kids success as your is on a different path.
We are here for you -
Hugs Angela
I can’t say your son will have the same results as myself, but I underwent AVM surgery at age 9 in 1985 and became one of the first to live through the surgery plus the fact that my parents were warned I wouldn’t live for long if at all and would be a vegetable. I’m proud to say I’m turning 44 graduated with my class and got my bachelor’s degree and now make my own life. Point is there are many ups and downs but the enday result could really surprise you.
Hi DB,
I was diagnosed with an AVM about a month ago and let me tell you, one of the hardest parts of it has been to remain positive about my condition whilst seeing others have a seemingly perfect time. I find myself getting angry and depressed quite often, and I can’t help but feel a jealousy towards anyone who is healthy and going about life with optimism and joy. But here’s the thing— that’s perfectly okay. It’s natural to the human experience to want more for those we love than what they’ve been given. Your sadness and anger towards the situation is valid, and it’s okay to have days when you need to simply sit down and breathe. It’s okay to hurt about seeing a situation you never wanted to happen unfold in front of you. You’re kiddos need you, yes, but remember it’s okay to take time for yourself too. You’re not being a depressive jerk, you’re being a human. My dad went through the same thing when I was diagnosed, and I never thought less of him for it. Rather, I understood that he needed to have his time to grieve. I’ll give you the same advice I gave him: it’s okay to hurt and it’s okay to be scared, I am too— but it’s also okay to show and feel these things without having to hide them as there is no shame in having emotions.
I hope the very best for you and your family, and I’m sorry this season hasn’t been kind to you. It’s easy to see others and crave what they have, and it’s so very hard to find the joy in the situation in front of you, but please keep fighting for that joy. You didn’t fail your son in any way, shape, or form. You’ve been there for his journey and loved him through it, and that it’s one of the most successful things any parent can do. Stay strong! Better things lie ahead!
-Bella
Hi DB,
I am also the parent of an AVM survivor. Her rupture was 3.5 years ago and she was days shy of turning 10. Given the extent of the bleed she has managed to make a very good recovery, but she is physically disabled and will never be the woman she was supposed to be. The time away from school and having to change schools twice since the rupture have done a number on her. She struggles to make friends and simply cannot keep up physically with kids her age. She is walking again which is quite a miracle —her AVM blew up a good chunk of her cerebellum—but her balance is poor and her stamina is garbage. She’s also sort of awkward now. Her speech is slow and sometimes slurred and she says odd things. I think part of that is the brain injury and part is her low self esteem because she knows she’s different. She is sad and lonely and jealous of her 16 yr old brother who has tons of friends and can just take off on bike or foot whenever he wants.
My heart breaks for her everyday and I too am a functionally depressed person. I go through all the motions of my job and my duties as a mother but I’m pretty flat.
Our whole family dynamic has suffered so much since her stroke. Both of my kids have gone through puberty in that time and I so deeply miss the time before. I know part of that is because they’re not little anymore but I feel like 2 years of our lives were lost while she was in the hospital and in active recovery. My son is a different person. He’s quick to anger, rude sometimes and hates school. He is super smart but doesn’t care to try at school. It pains me that he isn’t thankful to have an uninjured brain. It won’t matter how hard my daughter tries, she’ll never have an easy time with school ever again. She struggles to read, write, everything academic now.
And my husband is pretty despondent about the whole thing. He’s written our son’s future off saying he’s a loser. He hates what the AVM has done to our Katie and basically feels like it ruined all of our lives. But he can just throw himself into his work. I can’t. I’m the family glue. It’s an incredibly stressful situation. My mother died last spring and since then I feel pretty lost.
So in short, I’m not going to give you a pep talk. I totally hear you on hearing about other kids’ successes and just knowing you’ll never have that. It sucks. I’m a very optimistic person (though you wouldn’t know it from what I’ve written here!) but it’s exhausting to keep on going when you just want to lock yourself in a dark room for a week!
My name is Eric and I was as you would say one of the lucky ones. I was 9 when I suffered AVM resulting in a brain aneurysm, and was placed in Children’s HospitalI was there for over a year as Neurologists worldwide told my mother I wouldn’t live for more than a year if surgery was performed, but with the help of my Neurologist my mom found the most successful Neurosurgeon of the 1980’s in Germany. He had one successful surgery 6 months earlier and at the age of ten in 1986 I was his 2nd now there have been many since me, and thereven now finding the problems at younger and younger ages, there was a 2 year old in Ireland who is now 15 and I’m 44. It took 4 years and lots of hard work but I got my speech back, walking, balance, I even got a job as a cashier for Ralph’s a Kroger conglomerate, I even gave up my summers and graduated with my high-school class then went to CSUN and got my Bachelors Degree. The only thing I can’t do is drive because of the chance I may have a seizure. My point is always think positive especially when around your daughter, if you are she will be to, and maybe look into Epilepsy Foundation Camps so she can see others like her achieve great heights.
I have survived four strokes, thank God I´m alive. My normal life is not the “normal” of the rest of the world. I´ve had many hard times and I´ve seen the pain in my parents faces when they can´t do anything to help me, I have been blessed with my parents and my sister. I understand how you feel when people talk about their kids graduation I feel that way whenever people my age talk about their careers and other subjects that aren’t working in my life, I know they are just sharing, but to me it feels like darts. I am 45 years old and I have been working for a long time on myself and I still have a lot of room for improvement. I will pray for you and your son. God bless you. With all my love Angie
I’m with you in spirit as much as I can be. I’m sending everything positive in your direction for you, not just for Katie.
I’ve no idea what to say that might help but I’ll share a story.
Many years ago, at the beginning of my second year at university, I was at Freshers week, welcoming the new folk to college and helping to show them to their rooms. One of the guys, who I didn’t help, but I saw someone else helping, was a lad called Jonathan. The thing which struck me about him was that he was in a wheelchair, had no legs and I think half an arm missing, so just one limb. The thing that struck me most as his family went to his room in the supported area of the college was that he had a brother who looked completely identical to him but had all four limbs.
Wow, I thought. How difficult to have a twin brother who is so similar but is not disabled. What must that do to your self-esteem?
But, you know what? Jonathan was clearly a determined chap because he not only made it through college but worked hard to get a first class honours degree in the same subject as me (I’m not first material!!)
I met him a few years after university and he was in my dream job at the time. Very well done, indeed. I was most impressed. I have no doubt but that the rather poor set of cards that he was dealt meant that he determined to work hard and show everyone what he could do, despite them.
Now, I know Katie is not likely to be a university scholar – the university was simply the environment in which I met Jon – but if there is anything you can do to encourage her at some stages in her life to say to herself “I don’t care what anyone else thinks, I’m going to have a go at X…” then you’ll have me standing with both of you, wishing as hard as I can that she can make a go of it.
I’m with you.
I also hope that the boys grow up a bit with time. It’s a tough thing that you’re all going through and everyone deals with it in their own way. None of you really quite coping. You’re doing fantastically. The boys obviously not very maturely but I hope that with time they will realise what a complete brick you are being.
