Tomorrow is 11 weeks. 11 WEEKS?

General Blog
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Life is crazy and not always kind.
But when you hit bottom you get to witness moments that lift you back up. Moments that fill you with so much love and hope you want to scream to the world just how big these feelings are.

These are moments that were born out of anguish but are brought on by triumph.

I have always said that I am a lucky girl. I know this, now more than ever, because my husband keeps reminding me I am every single day.

I am so incredibly proud to be Scott's wife.

I wrote this on Facebook. This is how I do updates to our world of friends and family.
I keep it just between the lines.
No details, no setbacks, just positive love and energy. "What you put out in the universe, is what you will receive". This is what I believe and what I have practiced.

I will be honest here. I found this website and started writing here because I was anonymous and was able to ask a lot of people with a lot of knowledge and experience about a crazy, unbelievable, can't wrap my head around it, life event that happened to the love of my life.
(I seriously have asked to myself during this change if we just didn't have it to damn good and something had to give)

But then, in this internet world, people found me. Our friends and family either because I had mentioned AVMsurvivors or by a random web search found my blog.
This is great, its awesome that I was able to give insights to what is happening, and give updates.
But then I became scared to write the shit. To write about how bad it gets sometimes. How scared I am. How I miss my husband and I miss my kids and I just want to go home.
I thought that if I bared my soul, I was failing Scott in someway. That if I wasn't completely positive, something would backfire in our world.

Here is the thing.

There have been setbacks. Big ones, little ones. But not a lot of them at all. I have started referring to them as our bumps. Nothing that we can't drive over.

Scott's memory at times really, really sucks. Short term more than anything.
He seems to remember in words instead of pictures, if that makes sense.
He always know me, he knows the kids and all of our family and of course our dumb dog, Max, which he affectionately refers to as "dumb ass".

But the memory is better some days than others. And I wonder if he is progressing or regressing. Its too early to know. Which can be heartbreaking, if i let it, but if I have no one to give me an answer, why spend all my energy on it?

Scott is 100% progressing in Physical, Occupational, Speech and Music therapy. Every day he amazes us and does things no one would have even asked him to do the day before.

We have wonderful conversations. He hugs the kids (which was so amazing). We talk about our lives. I tell him that we will recreate the memories that he has forgotten, we love a lot, we hold hands, we work HARD in therapy, we take naps and I tell him constantly how proud we ALL are of him.

So please keep sending love, sending positive thoughts, prayers, affirmations. Please keep writing me success stories, and that it is ok to have bad days.

Tomorrow will be an even better day.

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Wow 11 weeks ... amazing. Thanks for the update and the emotional outpouring. Yes, there are bad moments and even bad days but my husband and you are the best and I'm thankful to God that you both are part of this wonderful world. I have thought this but haven't expressed it to my husband for I would like him to know to stick with me for the best is yet to be. Oh, you will like this for another member who reads your wonderful blogs commented that the blog in which you wrote Scott responded "the beginning" reminded her of something I told her Eric had said to me. Really, the comparison could not have been a better compliment. I just reread your blog and I have compared living to running in a race for our daughter was a competitive distance runner starting in middle school into college. So, my term for bumps is life hurdles and yes we've had and will continue to have hurdles to cross but we will as you have driven over the bumps.

Yay for a better day!

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Hi, Danijo - thank you for sharing this. I always love how you end with "tomorrow will be even better" or something - sorry if I'm misquoting. I truly believe that - at least right now I'm enjoying an upward trajectory - but I appreciate your honesty in admitting that sometimes this situation can really stink. I am 3 years out and there are still hard days. They were even harder in the beginning, where you and Scott are. As you pointed out in an earlier post, the time for Mortal Danger (my words, not yours) has passed and now you've got a lot of hard work ahead of you. Recovery IS hard work. You do not get vacation days or weekends off. This is your life. And as I have come to terms with the severity and timing of what happened to me people have found me online, also - they Google lots of stuff and find me, and while they appreciate hearing about what I'm doing to promote recovery more people can relate to the "raw" and sad stuff I write about. I intentionally write about the hard times now bc I know it speaks to people - in fact, sometimes I write specifically in response to questions I get in life bc when something this crazy happens and you come out on the other side not completely insane it gives you credibility. This post in particular might help: 348. What's this going to look like?

I obviously don't have all the answers and I worry sometimes about building an online presence that is what people "want" to hear vs what is really happening. In this post I wonder about how it "looks" when I'm tired or sad. I think it's totally okay to be tired and sad - it's completely natural! - and fine to tell people about the hard times, too.

One of the hardest things for me to realize was that tomorrow is actually not always better. When I learned to walk I assumed that the pace and trajectory of my healing then was representative of what this was going to be like. What I did not know was that I was using certain muscles for the first time and my hemiparesis showed up and I had no idea what was happening. I got the full work up from all my docs and ended up having to sit on my butt for the greater part of 2012. That made me SO sad and frustrated. But retrospectively it has given me a way to relate to so many more people, and more compassion for my friends with permanent or degenerative conditions. But from what you're saying, Scott is doing GREAT in therapy - doing all sorts of new stuff he didn't do the day before, holding conversations, etc. This is fabulous. To me this means we are in a similar boat - we have the opportunity and resources (e.g. strong family support) to get better. But let me assure you - tough days happen. And they will be REALLY tough. But on the whole you guys are doing so fabulously well! And it is clear from your writing that this is due in large part to a decision on your parts - you are intentional about exuding positivity and working hard. But if it would relieve you to just hold hands and cry a little or a lot, please do so. Sending you a big HUG!

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Bumps is a good way to think of it. From everything you have told us, Scott is doing fantastic. Recovery isn't a straight upward path -- there are detours and stops along the way. We are rooting for you both that Scott will continue to have a good journey.