November Updates

As time passes, this nightmare is getting harder for me.

Sometimes I can grasp that time is on our side because the brain needs time to heal. But patience is a virtue and has never been a skill of mine. So most of the time, I'm overwhelmed, anxious, anticipatory, excited to see if TODAY he does something more, something different, shows me he's still here. But I'm tired of celebrating the tiny wins. I want him all back, fully. We all do. I desperately try to remember that fear and faith are both invisible choices, and I'm trying really hard to continue down the faith route. It's not easy.

I wish I had anything major to report. But for now, here are the small things:

• Brian's trach is out is healing up beautifully
• His swallowing is improving every day (more consistent, quick, and managing his saliva better aka less drool).
• On Monday he came down with pnemonia, but as of today (Fri) it seems to have cleared. He never showed any major discomfort or symptoms, thankfully.
• His muscle tone/tension is improving thanks to switching up some of the muscle relaxer meds.
• He is alert (eyes open) for longer periods of time.
• I'm a skeptic most of the time, but if you can catch him in a window of awareness, his command follow seems to be improving. Ex: he gave his OT 5 thumbs ups in a row, and lifted his head on command in therapy 5x. They are trying to see if we can establish visual communication via blinking but so far nothing consistent.
• His PT was stretching his hamstring on Monday afternoon and we both heard him say "no" loudly. That was his first verbalization and nothing since.

In major news, we got the house we wanted! Our dear friends, that even before this accident, we referred to as our 'framily,' have selflessly offered to sell their house and buy a joint family house with us to make the transition home more doable...in a setting where I can have some constant support and 'normalcy.'  I have no adequate words for what their sacrifice means to me and how this solution will improve Brian's quality of life, and also mine. I've lost a lot of myself to this - and trying to bring Brian home to our house was impossible and finding a home for just us two plus caregivers was more overwhelming than I care to admit. So...it is bittersweet. But my focus and priority is Brian's quality of life. And I believe a home setting for him (and I) will be a good next chapter in his recovery. It'll be a full house, filled with love and children and home cooked meals and I have to pray that there's something healing in that alone. I can only hope. To our friends that are about to become our roommates...we love you so much. What a gift to have forged a friendship like this in our lifetime. I am well aware of how special and unique it is, and I will truly never be able to explain how much weight you have lifted off me by even OFFERING to pursue this, let alone committing to the unknowns, by my side. I truly hope Brian wakes up there, and looks around and feels more love than humanly possible. Thank you.

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A friend sent me an excerpt from a grieving wife's blog this week that I am going to share because I don't always know how to answer the questions "how are you doing" or "how is Brian doing." But this woman articulated it in a way that I think provides an accurate portrayal of how I am currently doing. I know Brian is still alive, which means hope is still alive, but having your husband in a minimally conscious state is a torturously scary purgatory that comes with so much loss and so much uncertainty, with no roadmap or even guesses at outcome. It feels like grief on overdrive...complete surrender to self, to God, to life.

"I wish you knew that went I went through my darkest days of grief, it was hard to be with some of the people I loved. Seeing everyone's life stay the same while mine had fallen apart was/is more than I can handle. It is impossible to explain to those who haven't lived it.

I wish you knew how much I love talking about him. It makes me smile to hear stories about him to remind me how he impacted lives. Saying his name is the most comforting thing you can do for me.

I wish you knew how horrifically lonely it all is. In fact, lonely does not even start to explain the way it feels. Even in a room full of people who love you - you feel utterly alone without your person.

I wish you knew I was not strong and inspiring and brave...just a survivor. Telling me how strong I am all the time just makes me feel like I have to look and be a certain way to continue being "an inspiration."

I wish you knew how traumatic if all was. From the first phone call and every moment after, it's more than most humans should be asked to live with.

I wish you knew how powerful shock is on the human body. It makes you feel completely detached and inhuman while looking and sounding well composed, and amazingly put together. Well, atleast that's what it did to me...we all handle shock differently.

I wish you know how badly I will always hurt...it never goes away. It's a forever part of who I am.

I wish you knew that you being (here still) in the first few weeks was great, but I didn't start to NEED you until later on when everyone left and forgot my pain...grief is often harder when the shock wears off, and the real pain sets in. There is no timeline for that pain.

I wish you knew how life altering it all is.

I wish you knew not to waste your life because time is so very short."

I thankfully have an army of support that I thank God for every day. I feel supported and I feel like I am seeking the help I need when I need it. But it does not change that I miss Brian every second. That I want him to have his life back. I want him to be able to enjoy it and not be bound to a chair or a bed for the rest of his life. I want him to have the crazy survival story that doctors, nurses, friends, family, coworkers all get to talk about and say 'remember that trooper that survived that insane crash and emerged and made an amazing recovery.' Brian deserves that. It's the only outcome I want. I beg and plead with God daily to end this suffering, and restore him so he can tell his own story. I hate being the person that doubts God is able, until I see it done, because God wants us to relax and leave it in his hands, which is entirely easier said than done. It's nearly impossible, actually, after 9 months. I am on the edge of my seat, waiting for everything to 'click' for Brian. 

Can everyone pray with me that God continues to rewire his brain? He is so healthy, and so deserving, of a second chance to fully live. His body is so able to heal, and I'm asking God to let it be so. I don't know how much endurance I have left in me. I'm hoping the next chapter, with home care, revives me a little. And I pray it revives Brian entirely.

On that note, moving two houses into one next month, during the holiday season is going to be nothing short of a doozy. On top of that, we will be doing modifications to make it accessible for Brian in his chair + all the usual new home things and our list is daunting. With 3 kids, a dog, and Brian, we are overwhelmed to say the least. I am going to swallow my pride, and beg for help. In my next post I will be sharing a sign up sheet for people that might be able/willing to help us move, unpack, paint, etc. so that we can expedite the move and set our goal to get Brian moved in by Jan. I mostly ask for help for my friends because they are selling their home, both work full time jobs, and have 3 small kids. I have the luxury of moving in slowly while we renovate the bathroom, but they will need support in numbers. We have secured a moving truck that was generously donated, but man power, boxes, and helpers will be needed to make this a little more bearable.  [Full disclosure, typing this request for help physically makes me sick because my producer / independent brain wants to control it and do it all myself, but I know that it's impossible. So thank you in advance for any time, talent, or energy you'd be willing to give up for our families to make this a little easier].

I wish I had something inspiring to share to sign off, but for right now I just feel entirely overwhelmed and and desperate to come up for air. Thank you to everyone that is able to reach out and attempt to pull me up. I do notice and I do appreciate it. <3 Looking forward to seeing some familiar faces at tomorrow nights' Got Your Six Foundation Brewery Event. 

#brianfrankstrong

GoFundMe (still live to help support moving costs & home modifications):

https://gofund.me/a8f5908c