This morning, my CHARGE Facebook family informed me that a two-month old CHARGEr passed away. There have been quite a few deaths lately and it breaks my heart. It's not that difficult for me to remember the "dark days" when we simply didn't know what we were dealing with, and at what level. The days of "it depends..." I honestly sat here as the tears fell down my face and onto my lap. The emotions conjured were such as if I knew the family. I don't. But, I've been through a similar fight and although my outcome has been different, I can't help grieve as every little CHARGEr is a piece of me. He was a part of our group, our community. I ache for the family.
I'm not a religious person, so it feels a bit odd for me to offer prayers. I usually 'send my best', 'all my good energy', 'my thoughts are with you'. I haven't quite figured out what to say, although I know there's really no right answer - I just know it's important to say SOMETHING! I never understood why we say, 'I'm so sorry for your loss.' When really, when something like this happens, it's ALL of OUR loss. It's our loss that we'll never see that kid blow the hair back on the Dr's and specialists. We don't get to watch that kid overcome obstacles, hurdles, and defy the odds. We don't get to watch him blossom, grow and develop on his timeline. It's all of our loss. On the other hand, I can't help grieve a grief so deep for the parents. I think a lot of that stems from what we've been through and blood curdling cries I've heard come from deep in my soul. The trauma is still there. The PTSD lingers. The ache so deep that it only surfaces when times are really hard, or emotions are stirred up.
It's tough. It's really, really tough.
On the other hand, choking down some of these copays is tough. I went to PT today and they did ask me for $240., to which I replied, "I'm prepared to give you $20." I'd rather pay $30. a co-pay then have to cough up so many out-of-pocket expenses at the beginning of the year. I mean, that's insane that they think that's easy for us to do. Luckily, they are willing to set-up a payment plan. Yet, I've gone from seeing PT twice a month to once a month. I simply can't afford it. I don't mean to whine about expenses as much as I do, but, it's part of our experience, our lives, and therefore, I think it's imperitive to include in the blog.
On the note of PT, Andi didn't do as well as she has been on the standing/walking. Since enduring stomach flu, she has seemingly lost a lot of her strength and control. We are going to work on following-up on the Hippotherapy, as well as getting her back into the swimming pool down the street. Hopefully, the water is warmer this time of year, and she has more fat cells to keep her warm. (Last time her lips turned a shade of blue).
We have someone coming Tuesday night to bid our new roof. I hope this doesn't turn into what happened last time we had a bid. It was like buying a used car. Where you get the handwritten offer and it's slid across the table. You review it, scratch it out and slide a revised offer on the table. It's about as scummy as one can get, especially after you've divulged how buried in medical expenses you are... scummy! We have a referral from our trusted friend, but I thought it might behouve us to get a few bids, and get an idea of what we're needing to save. Please, don't let this be a colossal waste of my time, again. I will be very angry if it is.
My massage last night cost me $20. and although it was worth it, it wasn't anywhere near one my best massages. Early in I had to ask the man if he was mad at me because his pressure was so much I thought I might end up with a broken rib or two. Luckily I didn't talk much, so I was able to be quiet and try to appreciate it, but... it just wasn't that great. Oh well, maybe if I plan ahead I can choose who I see and go get something totally therapeutic & rejuvenating. I tried to schedule with my favorite, but she's too busy with other jobs like work and school... bah!!!! "disappointed!"