Been away from the blog for awhile. We spent two weeks in the SE, visiting family and friends. Daddy Bean and I also stole away to New Orleans for two nights, and a night in Biloxi - where we saw Frank Sinatra Jr. It was most precious time away from the Bean, which is so ridiculously rare. Unfortunately, we were both fighting colds... so, it wasn't quite as fun as it should've been. I also found that despite being sans-Bean, we still spoke of her often. Often quoting Yo Gabba Gabba lines from the show. For example, there's a store in New Orleans called 'Razzle Dazzle!' - so of course, Daddy Bean says 'Razzle Dazzle' in his best Muno voice... as that is something he says often. We giggled. We haven't been giggling much lately, so it was definitely a refreshing change. We've decided that if they'll have us, two weeks with Poppa B and Ginga is really better for us, for Andi. She gets more time to know them and enjoy them. It's so far to go for a short period of time. Luckily, we can work wherever there's Internet connection, so, that enables us to go and do just like we are usually stuck here at home.
Andi has been busy working on her feeding, OT/PT - balance/walking issues. She's coming along well and we've been given homework by our therapists. Currently, she's on her 3rd hour of keeping her hearing aid in. I'm about to take it out only because I need to get her down for a nap. She's still not keen on nap-time, but, she'll be more than a handful for Daddy Bean tonight if I don't get her rested. I can deal with nap-less Bean, but, he's not a fan.
I seem to keep getting big fatty bills from the hospital. I'm already on a payment plan for one from last year. Luckily, they let us pay it over a year, interest free. However, I just got another one, and I'm about to puke. I seriously don't understand how someone with double insurance is stuck with these large bills. You'd think that we'd taken the necessary steps to alleviate us from the financial burden of a "special needs" child, but, apparently... it just isn't so. I'm sitting on three bills from the hospital now and need to find my level head and strong stomach to call and find out WTF!!! A lot of medical billing is incorrect, but... we haven't really found that to be true. In any case, it's stressful. I feel like an old fart saying I remember easier times when we had money in the bank, room on our credit cards, and an easy, breezy light lifestyle. Seriously, I miss that feeling. Instead, we have the polar opposite and it's choking. No one seems to really talk about the financial strain of having a kid with special needs. You add the vast array of therapy's and medical procedures needed by a kiddo with CHARGE Syndrome... and wowza... it's a whirlwind of hardship. Yet, we'd pay every penny and then some to make sure Andi has the best possible foot forward. It's just overwhelming at times to really express the high's, low's and all the levels in between. We're in a unique spot because we make too much money to qualify for assistance, yet, we still have the same bills as we did before Andi, then all the medical bills/copays, and it just makes for additional stress -- as if Andi's well-being and development isn't stressful enough. Ah, the joys of parenthood! I didn't read this one in the brochure though!!! Enough venting. It doesn't actually make me feel any relief, just makes me feel like a big ol' whiner. I have so much to be thankful for...there are kids in the PICU/NICU struggling. I read about them everyday and it keeps my gratitude in check, humbles me with my superficial worries, and reminds me to savior the many positives we have surrounding us. Complaining about money woes will always be something all of us do, it's natural. However, in the big swing of things, the bigger picture, our woes are nothing when we have health. Therefore, I bow in respect. I choose to send my best positive vibes out to the world, my thoughts to those kids who are still fighting the medical fight and the biggest hugs to their family. I understand.
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