How We Pay For Enormous Medical Expenses

One of my favorite things about having a blog is hearing from my readers.  It's so nice to get your feedback, thoughts, questions, comments, concerns, and encouraging words.

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:

JeanneAugust 5, 2013 at 1:46 PM

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.

While I might not have worded this comment in quite the same way had I written it myself, Jeanne does  raise a good point:

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

Fishing, Counting, and a Medical Update

The lovely Ann Voskamp had a blog post yesterday that I just had to share with you.

So many of us special needs parents are tired.  Worn out.  Exhausted.  We collapse into bed at the end of the day, only to wake up in the morning to do it all over again.

And again.

And again.

24/7/365.

And the future can start to seem overwhelming.

And we can start to wonder if God even remembers us, let alone cares about us.

I always love it when I get a reminder, a little "refresher course" in God's great love for me.  And for Bird.

Just in case we're not Facebook friends, here's what I posted this morning:

Lana Rush

Today, I am fishing yet again. And like the disciples in John 21, I am tired of the work and the long nights of catching nothing. I am tired of bloodwork and medical tests and crushing pills and medical mysteries. I am tired of cleaning toilets and doing laundry and mopping sticky floors. And there it is - Jesus telling the disciples to do it one more time, to cast their nets yet again, even though they have been empty time and time again. Jesus asking me to wake up and do it all over again. He is asking them to trust Him still. He is asking me the same. Peter casts and gets a net full of fish, 153 of them. He actually counted the fish. He counted to see what God had provided. And that is my reminder to count. Because even when it seems like Jesus has forgotten, there are at least 153 ways that show He has not. So today, I fish. I cast my net and I count. I write it down and I highlight in yellow. Because "it's a life that counts blessings that discovers its yielding more than it seems. The secret to joy is to keep seeking God where you doubt He is." 

Here's the link to Ann's blog post that I hope will refresh your body and soul this morning. 

And maybe even the next few mornings.

Medical Update:

Ryan and I have a phone call with Dr. Najjar tomorrow (Wednesday) at 11:30 Texas time to go over all the test results from Lily's stay at NYU.  Together, we'll come up with a new plan of treatment which might possibly require us to head back to NYC the following week.  We are still very hopeful and feel certain that Dr. Najjar has a good handle on Lily's medical issues and how to treat them.

Dr. Souhel Najjar is most definitely one of my "153".  He is counted and highlighted in yellow!  God has blessed him with incredible intelligence and the gift of diagnosing and treating what often seems hopeless.  God is using him in mighty ways to bring hope and healing to so many.  And I am so thankful God opened doors for us to see him.

I'll keep you posted on what's next for Bird!

Now get out there and have a great day, sweet ones!

World Autism Awareness Day: Light it Up Blue - But Get Loud, Too

I'm sure by now you know that today, April 2, is World Autism Awareness Day.  The day we are all supposed to light it up blue to bring awareness to the growing number of children diagnosed with autism.  

And I'm sure by now you know that I am tired of talking about "awareness".  In fact, I just recently published a post entitled "Enough Awareness. More Action".

I am ready to see a total change in thinking.  I am ready for a unified and vocal stance from parents.  I am ready for some action from the medical community.

So today, yes, let's light it up blue.  But let's also get loud.

This is a "from the archives" post, which originally appeared on the blog in July 2012. 

Unquenchable thirst.  Insatiable appetite.  Unexplained weight loss.  Bed wetting.

These were the symptoms that manifested themselves in our firstborn daughter back in 1998.

The diagnosis?

Type 1 Diabetes.

And thus began a daily regimen of insulin injections, monitoring blood sugar, analyzing ketone strips, carbohydrate counting, and dietary adjustments.

In researching diabetes, I quickly learned that there are two types:

Type 1 (also called Juvenile Onset) is insulin dependent, meaning the pancreas totally stops producing insulin and for the rest of one's life, insulin must be given on a daily basis plus extra after eating as a constant maintenance dosage to keep blood sugars regulated.  In other words, there is no cure.

However, Type 2 Diabetes can be cured, usually through diet and exercise and short term insulin treatment, usually in the form of oral medication.  In Type 2 Diabetes, the pancreas can often begin re-producing insulin with appropriate medical and lifestyle changes.

And therein lies the problem:  many people are unaware that there are two kinds of diabetes, especially back in 1998 when Ryley was 5 and first diagnosed.  So whenever I shared that Ryley was diabetic, I frequently heard comments such as:

• "I bet you're feeding Reagan less sugar now that Ryley has diabetes." - implying that I had somehow caused the condition by feeding my child endless amounts of junk food.
• "Well, don't worry about Ryley because I have an aunt/uncle/grandmother/..... who had diabetes and they just quit eating sugar and started exercising and it went away." - implying that we had an unhealthy lifestyle and once we made some changes, she would be cured.
• "Why are you giving her insulin shots? Don't you just want to have her take the insulin pills?" - implying that I had not done my research and just liked sticking my kid with needles everyday.

And my personal favorite, shared with me while I was leading a Ladies Bible Study, standing in front of a large group of women and telling them about Ryley's diagnosis:

• "You know there's a cure for that, right?" - implying that I was a lazy mom, too lazy to research treatment options for my daughter and take care of her to the best of my ability.  To which I patiently replied that there is no cure for Type 1 Diabetes, the particular kind that Ryley has.  To which she replied, "Yes there is." To which I replied, "Actually, there isn't.  Her pancreas no longer works and never will again.  Therefore, she must get insulin injections for the remainder of her life."  To which she replied, "That's not true.  There IS a cure!" To which I replied, "You are a stupid idiot."  Actually, I didn't say that, but I was thinking it.  I just told her she might want to share her "cure" with me after our Bible study.  And then I fervently prayed that God would keep me from punching her in the throat.

Honestly, it was exhausting to be in the midst of caring for a diabetic child and also having to educate the public about the difference in Type 1 and Type 2 Diabetes.

Hmmmm... sound familiar?

Kind of like it's exhausting to be in the midst of caring for a child with autism and also having to educate the public about it.

It's exhausting to watch the way people disagree, pick apart each other's words, cast judgement, and basically tear one another down over differing opinions.  

And I'm not talking about the general population here.  

I'm referring to the autism "community". 

Genetics.  Vaccines.  Environment.  Hate.  Acceptance.  Cure.  Regression.  Born with it.  

All of these words, and many more, can trigger heated discussions amongst the autism community.

A couple of firestorms erupted this past week - one in which a fellow blogger admitted that sometimes, she wishes her kid was "normal".  And another in which a journalist father expressed comfort in knowing that his son will not have autism in Heaven and how this thought helps him get through the day.

And of course, what followed was the typical response from the autism community - 

• "Are you implying that your child isn't normal?"  
• "What does normal even mean?" 
• "Do you realize how your words communicate to your child that something is wrong with him?"
• "Do you mean to say that the only way you get through the day is wishing your child was dead so that he would no longer have autism?"  
• "Do you realize that speech like this (from a journalist, no less - someone who makes a living with their words!) encourages hate and nonacceptance of individuals with autism?"
• "Your need to express how it feels to raise a child with autism should never come at the expense of disrespecting an entire population of people with autism, especially your own child!"

Wow.  Who wouldn't want to share their feelings with their fellow autism parents with such great support like that?

I wonder how much good we can do for our kids when we can't even get along within our community, let alone trying to make a difference in greater society.

I'm also wondering if some of this tension is created because really, when you get down to brass tacks, like there are two kinds of diabetes, there could be two different kinds of autism.

Hear me out.

This really won't be any new revelation to parents of children with autism or autistics themselves but as I see it, there are basically two "camps" within the autism community - those who believe their children were born with autism and those who believe their children were absolutely fine at birth and then regressed, usually around 18 months of age.

And I think these different belief systems are at the core of many of our disagreements in the autism community.

When you believe your child was born with autism, you believe that that is just who he is, who he was designed to be.  Autism is an innate part of his being, just like hair color or left/right-handedness.

When you believe your child was not born with autism but rather regressed and became autistic later in life, you do not believe autism is part of his genetic make-up.  You look at autism as an intruder, a foreign body who somehow invaded your child and changed who he is.

Those core beliefs are certainly going to affect how you view your child and how you view what others express about autism.  I don't believe we're ever going to see eye-to-eye on this issue and we're wasting time, money, resources, and education arguing over which "camp" is right.

I fall into the second camp.  If you're interested, I wrote about my difficulty in accepting autism in Lily and if you click here, you can read it.

While I've seen first-hand the ineffectiveness of having a medical condition with one name, clarified only by Type 1/Type 2, I wonder if we had something like that to describe autism, if it might allow us to separate ourselves into our respective "camps" for those moments when we need support from like-minded people, but also allow us to set aside our "camps" and come together for those times when unity is needed to make a difference for our children.

I'm not necessarily proposing a Type 1/Type 2 Autism but maybe something to differentiate between those two belief systems might be helpful.  It would communicate to others in the autism community that while we have a differing view on how our children came to be autistic, we can still get along and work together to make a difference.  I won't belittle you for believing your child was born autistic if you won't belittle me for believing my child could one day recover from autism.

Case in point - Lily's doctor will whole-heartedly tell you she does not have autism.  

He believes she has NIDS, or Neuro-Immune Deficiency Syndrome, of which the symptoms are very similar to autism.  His mantra is, "Call it what you want.  But don't call it autism."  He firmly believes that 99% of children who developed neuro-typically then experienced regression are misdiagnosed with autism.  He firmly believes that with the proper medical treatment (by an MD - not by biomedical interventions, vaccine-avoiding, GFCF, hyperbaric oxygen, and so on....), these children can recover.  Not in spite of autism, but because they never had it in the first place.  

Why is this important?

Because no matter what Lily's diagnosis, I am 100% sure she was not born with autism.  Autism does not define her.  It is not an innate part of who she is.

So when I admit that there are times I wish Lily was "normal", I am not attacking her as a person.  I am not attacking who she is.  I am attacking an intruder in her body that stole who she is and that I intend to do everything in my power to eliminate. 

This does not mean I am going to murder my child or am encouraging other parents of autistics to do that.  This does not mean that I wish she was dead so she can be healed in Heaven.  It does not mean that I hate my child.  

It means that I love her with every fiber of my being.  And it means that I would give up my own speech if it meant she could talk.  It means I wish she could say what I see her struggling to communicate.  It means I wish I didn't almost literally see the wheels in her brain turning, trying to figure out what I'm saying and how she's supposed to respond.  It means that I wish with my whole heart that I could make life easier for her.  

Bottom line? 

I don't think all kids have the same kind of autism:  

Type 1 Autism - Born with it, innate part of who you are, no recovery, fully accepting

Type 2 Autism - Not born with it, regression, belief that recovery is possible

If we could all just accept that we're coming from two different "camps" and quit trying to force each other to agree, maybe we could bring about some real change for our kids.

  

Enough Awareness. More Action.

Here we go again.

Wednesday, another CDC survey was published stating that autism numbers are continuing to rise.  Last year it was 1 in 88.  This year?  1 in 50.  Click here if you want to read just one of the many articles. 

I'm not going to lie.  

Raising a child with special needs is hard.  

Like mind-blowing, body-aching, brain-sucking, emotion-wreaking, heart-grieving hard.  

And as a mother of two older daughters who are far too quickly approaching marriage and childbirth, I am seriously concerned about the high, high risks of them giving birth to children who are almost destined to be diagnosed with autism, not because of anything genetic, but simply because of the growing numbers with nothing being done about it. 

Most of you know how I feel about Lily and autism.  I don't believe she actually has it.  I believe she is ill and with proper medical treatment, in time, she can recover.  Click here to read the story of the Bird.

When I bring up the story of Lily's regression with most doctors, they don't have any answers for me.  I even questioned a neurologist about it once and her response?  "Oh, lots of kids regress."

Umm... excuse me?  Really?  And don't you think that's strange, Doctor??  I mean, if I was a neurologist, I might be trying to figure that one out.  Just an idea.

Maybe nowadays lots of kids regress but I can assure you that regression has not always been such a common, matter-of-fact aspect of child-rearing.  I certainly never heard anything about it 19 and 16 years ago when I had Ryley and Reagan.

And I can promise you that not one single one of them will ever admit that a vaccine could've triggered something in Lily Bird.  Because even though the number of vaccines we give our children continues to rise right alongside the rise in the numbers of autism diagnoses, by golly, vaccines do not cause autism.  And even when I remind them that I am not saying that vaccines might have caused Lily's autism but rather triggered some kind of negative process in her body, they are just adamant.  Because vaccines are the holy grail of modern medicine.  And the government offers them to us out of the goodness of their hearts because surely they want all of us to be happy and healthy. 

Sorry.  I snuck up on my soapbox for a minute there.

Y'all.  Awareness is not the answer.  It's time for some serious action.

First, let me ask you a question.  If you are the parent of a child with an autism diagnosis, did your child regress?  Was he or she developing normally and then for whatever reason, suddenly start regressing? Losing skills?  Did you watch your child disappear right in front of your eyes, helpless to do a single thing?

Then maybe, just maybe, your child does not have autism.  

And maybe, just maybe, the reason for some of the high number of diagnoses we're seeing today are because what looks like autism may not actually be autism.

Again, I'm not talking about all kids diagnosed with autism.  Just the segment of those who regressed.

Lily is a patient of Dr. Michael Goldberg, a pediatrician in California who has totally narrowed his practice down to treating those children like Lily, who were just fine for a while, and then began losing skills.

If your child fits that profile, will you take just six minutes and watch this video?  

I'm not asking you to become a patient of Dr. Goldberg.  I'm not getting paid to promote his practice.  I'm not selling his book and getting some kind of kickback.  I'm not asking you to change what you're doing, to stop all therapies, and quit all biomedical treatments.

You're already good at thinking outside the box.  I'm simply asking you to do a little more of that outside the box thinking.  To consider the possibility that maybe, just maybe, your child could be more successfully helped if you quit thinking of his or her diagnosis as autism.  And if you started demanding real medical treatment for your child who is ill - not with a psychological disorder but a real physical illness.

If we parents will come together and start demanding that our kids receive the medical treatment they deserve, we will be heard.  And when we unite and share a common voice, the right people will ultimately hear us.  And change will happen.  And our children will get well.

Because, really, our children are what this is all about.

My child is what this is about.

And for her, I will do what it takes.

No more awareness.  It's time for action.