Thank you 
️
8 years and counting for me but I’m so close!!!
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Push buddy. It’s there for you to steal back.
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Thank you 
I’m glad you feel if so close now 
️ Don’t worry I don’t plan on giving up at all
As so many of us are survivors, what we have LEARNED from our unique life experiences, so far, in many way, it IS a Blessing! What I had, what I lost, but what, eventually I GAINED, I would not change ANYTHING! Look at your SUPPORT here, T!!
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I love what you all have to say! For me, I accepted the fact that I had a ruptured AVM and had survived. As an ICU nurse, I had seen plenty… I was just as human and vulnerable as anyone else. But, I kept trying to pick up as many parts of the old me as possible. Especially the nurse I once was. It was my identity.
It wasn’t until years later, when I recognized how I was throwing away the precious moments of the here and now, that I embraced the new me: the new me that empathized even more than before, that brought new insight to others, that explored new interests, and so much more. Now, I try not to waste a precious moment of my life. As someone once told me, “Yesterday is history, tomorrow is a mystery, the present is a gift.” (Original author also a mystery, it seems!). ️
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And THAT was one of my BIGGEST battles, that loss of identity. I had a role, I had a purpose… ….so now what??? Over time I have slowly come to accept this as a fact and not a choice. That is, despite what many dr’s opinions were. Some of them thought this was a choice, but nobody would choose to be here, not even me.
Merl from the Moderator Support Team
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What an excellent perspective. I’m only four months post and I’m doing well, although not anywhere near where I used to be. I’m still pretty unsteady on my feet and my coordination is not good(had a cerebellum avm resection, craniotomy). I loved to play golf and did wheel thrown pottery, both of which are a real struggle now. I’m looking for new things to do but haven’t come up with much. I’ll try to keep an open mind now
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I’m enjoying this thread, too. That we can be together, yet so many thousands of miles between us, and still lead each other to new ways of understanding ourselves is fantastic for me.
Lots of love,
Richard
I want to say that I admire all the survivors’ stories so much. My story is different because it’s my daughter’s story. Today is actually exactly 18 months since her massive cerebellar AVM rupture. It’s only due to fast medical intervention that she survived and is not more disabled than she is. It was touch and go for 4 weeks in the PICU and she had to get a tracheostomy and Gtube. Like Barry I am also a very thankful Canadian. She was in the hospital for a total of 8 months last year, 5 of which were at the intensive rehab hospital and we were never presented with a single bill. I can only imagine the costs!!
I despise the term “new normal”. What is new normal for a child who was days away from her 10th birthday when she suddenly lost months of her life? I can say happily that 1embolization, 2 craniotomies and 18 months later, she continues to improve every week. At the end of May her interventional radiologist saw her awake for the first time since last August. He was thrilled with her progress. This made me so hopeful for her future. Some say after 12-18 months you’re not going to see much improvement but I don’t believe that’s the case for my daughter. When we left rehab last August she could only take a few very unsteady steps on her own. She was still dependent on her wheelchair. Now she walks completely unaided in our house and yard. We can do quick trips to the store where she just steadies herself by holding onto my elbow. At school she uses a walker. We got a puppy in February and she has helped Katie so much physically and emotionally. We also have a pool in our yard and she is taking risks and i believe by the end of the summer will be swimming again. It breaks my heart daily that this happened to my sweet girl but I’m forever grateful for the recovery she is making and so proud of her determination and resilience. I’m thankful for this group too.
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Hi, AllieG!
Your daughter is a child and as such has much growth and develpment ahead of her. It is true that the greatest amount of visible change takes place in initial months. But, keep up with the “therapy”. A puppy is a great idea! The interaction will benefit her physically and emotionally. (And, it seems that animals benefit from the gifts that special people like her possess.). Swimming is great, too, but, under direct supervision, of course! The water serves as a form of natural resistance. I held onto the edge of the pool, kicking each leg forward, to the side, back, etc… I liked that you take her shopping, although the experience made me dizzy-feeling. The numerous items on the shelves, people, etc… was a bit of sensory overload. (It lessened over the years, but still exists, so I try to make my shopping trips short!). Also, may I suggest trying a child-size shopping cart, if available? It helps me feel stable as I move through the grocery store. I am sure you will find many means of encouraging your daughter forward. She is blessed to have you as her mother!
️ Onward! Lifeisgood
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Hey Allie,
I have to agree with Lifesgood on many of the points they have made. Your daughter’s age may be one of the biggest advantages you have. Both her body and mind have got much more ‘repairability’ and adaptation skills than some of us older farts. I explained to someone else that mine’s more set like old concrete, it has hardwired circuits and routines with very little flexibility. Trying to retrain me has been, let’s just say ‘difficult’ 
. But for a child those fixed ways and routines have not yet been set, so those mental and physical circuits still have great flexibility. There’s a thing called neuroplasticity and the younger/healthier you are the more plasticity you neural pathways have. It’s when we stop learning (or we think we know it all) that the neuroplasticity freezes, in my opinion anyway. New experiences creates new pathways.
So, yea, the medicos may so her recovery is over, or that she has recovered as much as she’s going to… ….don’t believe them. Maintain that physical therapy (and pet therapy) even if it’s to maintain muscle tone. If our body loses muscle we need to rebuild it to use it, much easier to maintain what we already have. I have a pair of mutts and them needing walks helps keep me physical. Good plan.
Merl from the Moderator Support Team
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Hi, Allie! Merl had quite a few great points! Wise. Ask questions, inform yourselves, move forward with a plan of action… In one way I was “lucky”. I didn’t have to make a decision. My cerebellar AVM ruptured. No decision for ME to make. HOWEVER, the odds were very much against survival. The whole experience definitely changed my outlook on life. As you point out, one never truly knows how fragile life is and how suddenly it can change.
️ lifeisgood
- I had an emergency craniotomy.
Excellent the way that you see it, Teiry!