Journal entry by Liz Boldon —
2 years & 1 day (731 days) since Robert's crash
In some ways it seems like forever ago, and it some ways it feels like last week - time is a funny thing.
It's amazing what one can adjust to when given no choice.
I won't go into a long reflection of the last two years here but I will say that for all the grief, pain, fear, anger and every other negative emotion, there are also bright spots if you look for them.
My family is incredible and Robert is surrounded by love every day.
My friends are amazing and have showed up for us in meaningful ways.
Everything else in my life is easier because I know I've already lived through the hardest thing I'll ever have to do.
So here we are, two years later.
Good news, bad news - I'll share the good news first.
Construction is ongoing. Robert's room is done (yay!) and looks great. They pulled up the carpet and laid a laminate floor that perfectly matches the hardwood in the rest of the house. And they put doors on both of the doorways so it's a proper/private room. We moved Robert back in today and are starting to get settled back in. The bathroom is starting to look like a bathroom, they may be done this week (cross your fingers) which would be fantastic. Shower, here we come. For those in Rochester who are looking for a contractor, I highly recommend PEAK - they have been really great and I'd use them again in a heartbeat; Pedro is top notch.
And for the less than good news... I think I mentioned that Robert has been more sleepy for the last several weeks (maybe months at this point?) It was a challenge to get specialist appointments and tests scheduled - I won't even go into the story about the three(!) times we were told the appointment we had was a "mistake" for various reasons, very frustrating. But after navigating all the nonsense, the bottom line is that Robert's VP shunt - the tube that drains the extra fluid from his brain to his belly - is not working. We don't know why, sometimes it just happens. But he needs it so will need to have it replaced. The only way to do that is surgery to take out the current one and swap in a new one. So we'll do that this Friday. We anticipate 1 (hopefully) or 2 nights in the hospital and then home and hopefully feeling better. Will be nice to have him more awake again. Now there are days where he's sleepy more than he's awake.
I'll spare you the infuriating details of all the insurance shenanigans but rest assured they continue. Between trying to be sure they are paying for everything they should be and arguing with them about their decisions that override what his actual doctors have ordered, navigating our healthcare system feels like a part time job - we desperately need a new system and all this is fuel to keep me working to that end - I'm incredibly grateful for everyone else in that fight.
So...here we are two years later....onward.
In some ways it seems like forever ago, and it some ways it feels like last week - time is a funny thing.
It's amazing what one can adjust to when given no choice.
I won't go into a long reflection of the last two years here but I will say that for all the grief, pain, fear, anger and every other negative emotion, there are also bright spots if you look for them.
My family is incredible and Robert is surrounded by love every day.
My friends are amazing and have showed up for us in meaningful ways.
Everything else in my life is easier because I know I've already lived through the hardest thing I'll ever have to do.
So here we are, two years later.
Good news, bad news - I'll share the good news first.
Construction is ongoing. Robert's room is done (yay!) and looks great. They pulled up the carpet and laid a laminate floor that perfectly matches the hardwood in the rest of the house. And they put doors on both of the doorways so it's a proper/private room. We moved Robert back in today and are starting to get settled back in. The bathroom is starting to look like a bathroom, they may be done this week (cross your fingers) which would be fantastic. Shower, here we come. For those in Rochester who are looking for a contractor, I highly recommend PEAK - they have been really great and I'd use them again in a heartbeat; Pedro is top notch.
And for the less than good news... I think I mentioned that Robert has been more sleepy for the last several weeks (maybe months at this point?) It was a challenge to get specialist appointments and tests scheduled - I won't even go into the story about the three(!) times we were told the appointment we had was a "mistake" for various reasons, very frustrating. But after navigating all the nonsense, the bottom line is that Robert's VP shunt - the tube that drains the extra fluid from his brain to his belly - is not working. We don't know why, sometimes it just happens. But he needs it so will need to have it replaced. The only way to do that is surgery to take out the current one and swap in a new one. So we'll do that this Friday. We anticipate 1 (hopefully) or 2 nights in the hospital and then home and hopefully feeling better. Will be nice to have him more awake again. Now there are days where he's sleepy more than he's awake.
I'll spare you the infuriating details of all the insurance shenanigans but rest assured they continue. Between trying to be sure they are paying for everything they should be and arguing with them about their decisions that override what his actual doctors have ordered, navigating our healthcare system feels like a part time job - we desperately need a new system and all this is fuel to keep me working to that end - I'm incredibly grateful for everyone else in that fight.
So...here we are two years later....onward.
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