Once in a while, there will be a particular comment that actually leads to its own blog post rather than a simple reply from me. Today's post is the result of just such a comment left on "An Open Letter to Doctors". It caused some discussion around the supper table in my house - maybe it will do the same in yours.
First, the comment:
I agree with so much of what you're saying. I wish doctors would listen better. As someone with a chronic illness I have gathered a pretty good team that usually listens to me. What I really wish you had written is how lucky you are to have the resources to travel all over the country to get the best treatment. I could find a better doctor 1000 miles away but who will pay for my transportation, room, and board? What about insurance that won't cover special treatments when standard treatments are available? Most of us can't travel just to get surgery with a smaller scar. We have to accept the treatment available to us. Probably even most of your parishoners can't even dream of the kind of access you've had.
We are incredibly blessed.
Without the help of both sets of our parents, financial and otherwise, we most likely would not have been able to do all we have done, especially so quickly. Ryan and I are able to make many healthcare decisions comfortable in the knowledge that our parents will not let us go to debtor's prison.
At least we don't think they would.
Our church family has done amazing things for us as well. Delivering meals to our home and hospitals, running our older girls all over town before they could drive themselves, dropping off groceries, giving restaurant and Target gift cards, free babysitting, and just good old gifts of cash have been provided too many times to count simply because they want to help us. These things, when all added up, contribute to us saving money so, in a way, our precious congregation has allowed us to seek better medical care through their gifts.
I am especially blessed because I married a man who believes in providing for his family. I did not marry a bum! Ryan is very fortunate to have a job that allows him the time off to go all over the US in search of the best doctors for our children without risk of losing employment. At the same time, Ryan has two other jobs to help provide even more cushion in our budget that again enables us to have more choice in our healthcare options.
We have adjusted our lifestyle in several ways to accommodate our medical expenses. We used to have a housekeeper and weekly yard service. While I am fully aware that neither of these are necessary expenses, we eliminated them from our budget in order to have more money available for healthcare. We got rid of cable. We have done things like downsizing houses, having garage sales, and selling things on ebay and Craigslist. We rarely go to the movies or have date nights that cost a bunch of money. We're much more likely to stay in and watch Netflix. I think most of you are aware that I have a serious addiction to books. I knew my Barnes & Noble expenditures needed to go so I have become a very frequent visitor to the library. Our philosophy has always been that every little bit helps.
The point I'm trying to make here is that while I'd love to still have a cleaning service or go buy a book without ever thinking twice, I would rather go without those things if it means that we can seek treatment from the best medical specialists in the United States.
Some of you may not be able to travel as much as we have, but it does not mean that you have to accept mediocre medical care. Every single town in the world has doctors that are better than others - that listen better, that are more knowledgeable, that are willing to do some research for their patients. If you can't even travel an hour from your home, then make sure that the doctor you do see is the absolute best one for you in your area.
And seek second, or even third, opinions. Even if it's just in your own town.
When we went to Boston thinking we were going to discuss a different kind of kidney surgery, that particular trip ended up saving us thousands of dollars because Lily didn't need the surgery that the local doctor had insisted she have before her first birthday. If we hadn't sought another opinion, albeit for other reasons, she would have had an unnecessary expensive and risky major surgical procedure, along with another large scar for the rest of her life, that would have cost much more than our trip to Boston did.
And thankfully, every hospital we've ever used has allowed us to set up very reasonable interest free payment plans.
Since Bird has joined our family, I've become aware of many organizations that are out there specifically to help families with medical needs.
Groups like Miracle Flights, Mercy Medical Airlift, and American Airlines Miles for Kids in Need program can provide free flights.
Ronald McDonald Houses, Healthcare Hospitality Network, Joe's House, and Hospitality Homes provide temporary accommodations for people seeking medical treatment away from home. Many hotels and motels also offer greatly reduced rates if you let them know you are there because of medical treatment.
In fact, on our upcoming trip to New York City next week, we are the lucky recipients of a completely free four night stay at a hotel right by the hospital provided by a generous non-profit organization for families with children just like Lily Bird.
One of the reasons I blog about our experiences with Lily is not only to have a record of her life, but to hopefully offer some hope, some light-heartedness, and some practical help to others who find themselves in a situation similar to ours.
So I hope that when you read about our journey, it does not discourage you and make you think we are doing things you could never do. Yes, we are blessed beyond measure. And from multiple sources.
But I bet you are, too.
At the end of the day, if you are loving your kiddos unconditionally and doing the very best you can possibly do for them, then you are doing enough.
Right where you are.
image courtesy of quoteswave.com
You are blessed, but you make sacrifices because you don't want to give up. Your seeking will lead to answers for many many other kids. If it weren't for parents like you willing to try, then we'd all just accept and give up. Don't stop. Don't give up. You are doing the best thing. We see how hard you fight for the Bird, and we see how much you love your babies. And no one can afford it!! God handles it. He is good and He provides exactly what we need.
ReplyDeleteWell said Lana. I am sure this will help many special needs parents who are wondering how to pay for all the medical expenses, etc., yet get the best care they can for their child. Keep up the good work!
ReplyDeleteI would like to thank you for the efforts you have made in writing this article.
ReplyDeleteAmazing! I am hoping best writings from you in the future as well.
This is such nice and useful information
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Paying your hospital bills is surely a big problem. Sometime hospital bill affect greatly our net medical expenses. These usually affect our budget for a whole year!
ReplyDeleteHello mate nice post
ReplyDelete