Well, maybe it's more so that I've been feeling badly that I actually forgot that it was World Down Syndrome Day. I feel like a pretty terrible advocate, to be honest. I mean, I knew about it, I knew that it existed and that it was coming up, but then when the day was actually here, I forgot...
It may be because I have a pretty poor memory.
Or it may be that when our lives are filled with such ordinary, beautiful moments,
the words Down syndrome do not even enter my mind...
~
That was Sunday.
And then there are other days, days like today, when Down syndrome is right there, front and center.
It's raining again and I've been on the phone with Aetna for over an hour today. We just recently got back from an orthopedic appointment and I'm curious (and by 'curious', I mean 'stressing the heck out')about how much Dylan's orthotics will wind up costing us.
Oh, the medical stuff. Now that's the stuff that gets to me. I'm not just talking about the time required for these appointments, but also the cost of each one. I mean...seriously? I'm all about therapy and being proactive, but at what cost? Over $350 for a 4 minute GI appointment in which nothing is accomplished? "Dylan's doing well? Great! So, let's continue on with the Prevacid and we'll see you again in, say, 2-3 months?". Oh, and that dietician that we just saw? Er, $364. And if your kiddo needs any kind of surgical procedure? OUCH.
Our insurance isn't great, but it's also not terrible. And we have been incredibly lucky that Dylan has been a relatively healthy kid, too. Oh, I know I'm preaching to the choir here, but...sigh.
It just makes me feel sad that we, as parents of kids with Down syndrome, have to pay so much money to do what's best, no - what's necessary - for our kids. Since most children who have a diagnosis of Down syndrome are typically prone to medical challenges, why aren't we eligible for better (ahem, and cheaper!) medical coverage? I just don't get it. It's not right.
Sorry to be so cranky. It's just that every now and then, the medical stuff just makes me nuts...and I wish, so badly, that I could actually do something about it.
But...onward and upward we go.
12 comments:
You don't need to confess anything about not doing anything special for WDSD. You advocate every single day!!!
Just the other day I said something to Mark about Lily and Down syndrome. He said, "You know, I don't think of Lily as having Ds...I just think of her as my little girl who I can't wait to get home to and play with". Sometimes I think I get to wrapped up in reading blogs, FB, and other things having to do with Ds. I just need to enjoy my little girl...not my little girl with Down syndrome.
We are going to be taking Lily to get her orthotics soon too. We are fortunate that they will be paid for by EI. I hope all of the insurance stuff gets worked out for you. It is quite a headache. And yes...the amounts they charge are insane!!!
((((hugs)))
hang in there. we all feel like this from time to time. it can be so overwhelming at times. and my husband has heard me saying many times that, "it's just not fair. it's not fair that people don't appreciate how easy they have it, and we have all these added worries." you have to give yourself a break sometimes. we can't be positive everyday, all day. you are a great mom and a great advocate by simply blogging about all the ups and downs!
If it makes you feel any better, I forgot Gage's "heart day" until about 10 at night when he was in bed and my mom reminded me! :) I think sometimes it is even better that we just enjoy the kids and forget about "that" stuff. I don't think you did one thing wrong!
And I'm sorry to hear about all the medical costs , sometimes it just blows me away what they actually feel is an honest price to charge.
Laurie
Only the people with the loudest mouth get what they need.Even if they don't need anything!!There is no need to have to struggle in this country.Get on some of those State Reps and let them know what is happening.We can give billions to the banks and auto co.You will be surprised to see what they will do.Wish you all the luck. Betty Art
Hi Laurie - I can't remember what state you live in, but here in Iowa we're applying for a waiver from Medicaid (the Intellectual Disabilities Waiver) that will help with all of Leah's medical expenses. Is there any such thing in your area? I just assumed something similar was available for everyone, but I'm sure you'd be aware if such a program existed for you and Dylan. Medical expenses are such a drag! Oh, shoot, Leah just ripped apart the entire newspaper while I was typing this. Dad's not going to be happy. Take care!
Great post! We've been so busy that WDSD came and went at our home, too, without much fanfare. I totally agree w/ your comments about medical expenses, etc. It's shocking that a doctor should charge more than $50 to tell you your son is doing well and we'll see you back again in 2 to 3 months. Crazy!
Loving your child IS being an advocate. Think of all the kids that don't ever get to come to be because they had Ds and weren't wanted...
We all have up and down days...me I'm having down days lately too...kids her age are getting so far ahead now and it is the first time I've been a little sad about where she is at...even though she has accomplished so much.
We say...CELEBRATE every day and not just once a year!
I hear you on the medical costs! And yours sound so much higher than ours, which are in the region of about R500-R600 per specialist vist ($62.50-$75.00). We also pay for a private medical aid (because our state offers ZERO services, nothing, zip, nada...) which costs us about R6000 per month ($750)!
You know, we didn't do anything either. We were so busy with so many other things going on that we didn't celebrate either so don't feel bad at all. I get frustrated as well with all the medical crap. Everytime Sam gets sick we end up in the Hospital and he is relatively healthy as well. I am just waiting for our hospital bill to come. We have pretty decent insurance as well but we still get his with at least $1000 every visit to the ER. I have a neighbor friend who I talked to after Sam was born. Her son has CP and is in a wheelchair. She told me just realize that you will alway have medical bills and be at peace with it. Pay what you can, even if it's only $40 a month and continue on with your life. It was really good advice for me at least. Even though we are paying $40 a month and still have alot to pay off I don't stress about it as much.
Your Dylan is adorable and is so lucky to have a Mom like you!!
Sorry for the stresses. Our orthotics were covered under our BCBS PPO. I had to get the billing code to make sure, but I checked and thank goodness everything was covered. Ugh! So sorry!
I understand the 4 minute $350 appointment. We have a cardiac appointment scheduled for the middle of the month and I know it'll be the same thing. Do I go with my gut and just cancel the dang thing? Or do I keep the appointment for peace of mind? I don't know. One never knows, that's why hindsight is always 20/20. Hang in there and keep on lovin' Dylan and your little girl.
I didn't do anything for WDSD either. Like you, I kind of forgot about it. I was too busy just being a mom that day!
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