For those that don’t use Facebook…

4 years.

I wasn’t even sure if I would post anything this year. I read my post from last year and it felt like I could have just written it today. Not a lot has changed. 

I look at this picture of her staring off of the ship and I wonder what she’s thinking . I chose that picture for the post because now I spend every day wondering what she’s thinking .

I know she can’t express everything that she’s thinking, and I really wish she could. I’m sure it wouldn’t be easy to hear, but it couldn’t be harder than not knowing. Once in a while, usually when she first wakes up, or when she’s been especially calm, she’ll say things like “I’m different” or “I’m alone”, but when we ask her to explain she says “I don’t know” or “I can’t remember”.   

This evening 4 years ago I had my last text exchange with her.  We talked about her trip to Holy Cross with the SGA executive board that morning to deliver a banner of support to their Athletic Director for their Women’s Rowing Team who had been involved in an accident on Jan 15th.

We talked about how much she had taken on for the second semester of her senior year and how she was handling it all. And we talked about The Bachelor.  She was doing homework, and I was at work.  At some point she decided to go out for food with her friends.   That 3am phone call…”Sue, your husband is on the phone”….my heart sank because he never calls me at work, and certainly not at 3am.  The accident happened just after midnight. It’s still hard for me to think that there were hours that I just went about my work without an inkling of what she was going through.  We got to UMass at about 4:30am.

Life has never been, and will never be the same.

I realize now how strongly I held on to my belief that she would be ok.  I knew how bad TBI’s could be, and that many don’t survive, but never for even one second did it enter my mind that she might not survive. Not even the day that the doctor told me that she was on the last medication that they had for reducing the pressure in her brain, and that she had developed side effects and they had to stop it. It would stay in her system for 24hrs and after that she was in her own, they had nothing more to offer.  I could feel the nurse staring at me while the doctor spoke, like she was waiting to catch me if I collapsed, but I didn’t flinch. That was not going to happen, I just knew that was not going to happen. 

I had the same resolve with rehab. Her progress through all of the Ranchos Los Amigos stages was much slower than most, but I believed she would make it back.

And she has come a LONG way!!! Just not as far as I had planned on.  

I think that’s why this year this day is hitting harder than it has before. We are still seeing progress cognitively, but it is very slow. Like I said, last year’s update still works for this year.

That makes it hard for us emotionally, we are tired, burnout is real! 

But what it doesn’t mean is that we’re giving up!  We have a new PCP for her who seems to be willing to help us find some new avenues to take.  We will have her vision checked by someone who can tell us what her brain is doing, not what her eyes are doing. We will continue to try to find a neuropsychiatrist who is familiar with brain injury to help us adjust her meds so that she can be as cognitively aware as possible, yet not get so agitated, so that she can participate better in different kinds of therapy. We will continue the hyperbaric oxygen, we will continue with the fabulous team we have at PediaFlex Therapy Center, LLC  (thank you Matt Luginbuhl!) and

the wonderful team at ViVO Chiropractic (we love you Dr. April M Little D.C.!)

Our goal is to give her the best possible life she can have given her obstacles, and we won’t stop believing that there is a way!

Thanks to all of you for continuing to care, for remembering her and for following along on this journey! Your support means so much!

It’s Lily Day…Lily 2.0 is 4…..do something kind for someone today, be a little goofy, dance to Apple Bottom Jeans, wear some Bumble Bee tights in her honor, she would love that!