Quantcast

AVM Survivors Network

Here is some HOPE coming up on 2nd Anniversary of our 12-year-old's hemorrhagic stroke

Dear All,

Please pardon that I am not a regular here. In the early days of dealing with my son's sudden hemorrhagic stroke and surgery, this place was too nerve wracking for me.

I now have some hope to add to all the other hope that must be hanging around here. So this message is for new people who are currently as scared as we were.

We are experiencing a miracle and I wish miracles for everyone who is touched by AVM and the challenges that can happen.

Our son's hemorrhagic stroke came without any warning.

He was life-flighted to a children's hospital where his life was saved by a team of great brain surgeons. I have so much respect for brain surgeons now -- and despite that the "bed-side manner" of our brain surgeon was hard on my wife and son, to say the least, he remains one of the most respected and cherished names in my book. Thank you brain surgeons.

When my son woke up out of that first surgery, we slowly came to learn that he had lost half his vision, homonymous hemianopsia, his ability to read, and all of his nouns. (Just learning all that is a long story I will spare you.)

These were dark and scary times. And these dark and scary times passed. This is why I am writing here. I want to share the hope that we have experienced.

My son has had to do two years of many types of therapy. He has had to do physical therapy, occupational therapy, speech therapy, math therapy, reading therapy, and vision therapy just to name a few. It's all kind of therapies. Just returning to wherever his new norms are.

Because he is a teenager on top of all this, some of that has not been easy. He hasn't always had the optimism or good attitude that would make all of that easier. There have been hard times when he pushed and pushed and did not make progress.

Then there have been times when he has made incredible progress in very short amounts of time. It is as if all that time when therapies didn't seem to be working, they actually were working but we just could not see how they had worked. And then suddenly it is like the dawning of a new sun and so much has improved, seemingly overnight.

The message here is to hang in there through the hard parts and keep putting one foot in front of the other.

Here's the miracle! My son has arisen from the mire and the often hopeless feelings he experienced. He can now speak and read beautifully. He is a fencer! He loves the sport! It is all in front of him! Yes, he still has visual deficits, but therapy has helped him work with them.

He went through his first little romance. Beginning, middle, and end. Normal middle school stuff. Elation followed by the sadness. And he got over that and moved into high school. Once burned, twice shy -- he's not keen to leap into new loves, but he studies for his classes, has friends and a thriving social circle. And he has a passion for the sport of fencing, in addition to Skyrim, thank heaven.

So I just want to say to all the new people touched by AVM: there is hope. So much hope. My wife and I do not spend hours in constant high fives because things are a little different, but things are so much better than how they were during the first six months. I have not read this board enough to know if the first six months are the hardest for everyone, but they were the hardest for me.

New people, I read two books during the first six months, "My Stroke of Insight: A Brain Scientist's Personal Journey" by Jill Bolte Taylor. It helped. Jill seems a bit more God oriented than I am -- I'm a fan of God but I don't like to talk about it, she does. And her event was so different than what happened with our son -- she did not get immediate surgery. We are very glad we showed up and just said yes to everything. She spends a lot of time in the book describing how my anxiety there was in making decisions. We simply said yes to everything and our son's life was saved.

I also read "The Day My Brain Exploded: A True Story" by Ashok Rajamani. Wow! What a story. His story is closer to what happened with our son. Ashok is candid and charming as a writer and because Ashok's event happened while he was masturbating, he is able to include more humor than Jill includes. Ashok suffered homonymous hemianopsia and his description of some of what he experienced translated into my wife and I being able to help our son a bit more than had we not known about his experience.

What both of those books have in common is HOPE.

And I want to chime is as a third voice in the AVM conversation about HOPE.

It gets better.

I know it is terrifying. My relationship with God changed profoundly during this. I got really angry. I listened more closely to my atheist friends, because you know, wtf. Right? But in the end I kept my practice of faith and am better for it. I have no answers around that stuff; I am just sharing that I know it is hard. Ultimately, when I returned to it, my faith helped and continues to help.

So, our story progresses. Our son is 14. Cognitive testing reveals that things are different than they had been. Insensitive professionals have said things like, "Just be grateful your son's IQ was so amazingly high when this first happened." Yup. Things are different. But so much better from the mute days in the hospital using hand signals. My son is in honor's English now! He is an amazing creative writer and a great teenager. He is forteen and wants to see the new Marvel feature Deadpool with his friends -- it's rated R. Oh no. He had to break the news to me easy, "Dad, my friends and I are all going together. It's going to be okay." I did not let on that it was fine with me before he opened his mouth. What I love is that he is hanging out with friends and having the experience that young people experience.

I spent two weeks with him in a hospital room. If there is an up side to this, it's that we are incredibly close.

So, new folks, take from this the silver lining that it gets better. I'm pretty sure that I would not have chosen this, but it having arrived, I know that it has brought all of us closet together -- Son, Daughter, Mom, and Dad. All so much closer. That's just one of many silver linings. I know I shall find more of them.

Be well. Last words: It gets better.

-- Chris

Hi Chris,

Thanks for sharing you son’s AVM journey. Trying to think of something else to say, but I have no words for the strong positive feelings I’m experiencing after reading your son’s story.

Take care,
Debbie

Chris. My son had a haemorrhaging bleed the day after your son. Super bright. Has been left with same haemonopia. Good attitude. Great kid. Suffers badly with headaches. But we are so grateful. 2 years on. It’s exhausting. Gwen (Michael’s mum)

Hi Chris,
Your positive attitude and story were inspiring to read. I can't even imagine what it would've been like for me at 14 to have gone through what I went through at 33. So your son deserves all the praise for handling it the best he could. I agree that when things like this happen, it brings so many people together and it forces us to reevaluate our belief system. I was raised in a Christian household but have been atheist most of my adulthood but the week when the stuff hit the fan, I found myself praying every night. And people I hadn't seen in years came out of the woodwork and people all over this planet were praying for me in a way that deeply affected me. There is a lot of hope in being an AVM survivor, be it you the patient or the family. So I applaud you and yours. Hope your son keeps chucking along and living the life of a teenager. :)

This was by far the most beautiful thing I have ever read. This is exactly what I needed to hear right now in my life. I cried twice while reading this. I can’t believe that your son was only 12 when it happened, I can’t imagine. This story gives me so much hope. I was only 22 when I had my stroke, I was just deciding what career I was looking into, I had actually just applied to school. I was unconscious for about a month. When I woke up my friends told me I did get accepted. I was always independent, I live with my twin sister and her boyfriend. I have less support from my parents then I would like. The past two years have been really long, I was in rehab for nine months. Because of the stroke I have left side numbness, double vision, nystagmus, no balance, trouble with speech, and ataxia. I do only type with one finger so this is taking a really long time. Everything has gotten a lot better. Did your son lose feeling in any part of his body? I do find it difficult when I hear my friends talking about cool experiences that I cannot participate in.
Thank you so much for posting this story, it has given me so much hope and is exactly what I needed to hear to keep me going!
Cassandra

oh, your story hits so close to home, it's only been 1 for us since my then 10yr old daughter had a cerebral bleed & hem. stroke. Rehab, yes hand signals she was mute for 5mo...we didn't know if she would talk again, ENT scoped her throat & said she will in time, she talks good now, its crazy to see their journey, their recovery..for us when we left rehab, my mother in law said its like bring home a baby, she needed feed through a tube, changed, couldn't walk or talk , now things are improving can talk & walk , still has one hand she can't use, & her foot wants to turn in ( wear a foot afo). She had to relearn to talk, walk, read, count..everything from scratch, so we can totally relate...somethings have improved a lot other things not as much. You are so busy with daily therapies & schooling them being a caregiver, but its sooo rewarding. You love them so much, & feel bad for all they been through..It's been a journey for sure...they all have a story to tell. people need to hear about what happened, we need to spread awareness.
This site offers help & hope..Faith in God, prayers from others have been so encouraging, meeting other parents in the ICU, sharing trials & stories. connecting with others, all blessings..Never give up.

Hi, I’m glad that your son made it though, although must be tough for him and your family at such a young age. Randall and Ohsu are excellent hospital. We are both fortunate to have treatment there. I wish him a bright future and a full recovery (avm-free).