Where to Lay our Baby Down to Rest {Our Trisomy 18 Baby}

***This post was originally written in 2013 not long before we lost our son.  I never had the chance to post this but wanted to post it now as a way to continue his story here on my blog.  Please note that I am speaking in the present tense in this post, but everything happened back in September, 2013.***

If you missed the beginning of this series, please be sure to read these blog posts first:

Here are all the posts in this series about our family's journey:

 

My husband and I are both planners.

Well...my husband is a typically California-laid-back go-with-the-flow sort of planner.  Which is much different then my Type A originally-from-Boston planner personality.  And over the 12+ years we have been married we have met somewhere in the middle.  There are things that should be planned and there are times when I needed to learn to be more...uhm...flexible.

And we both realize and embrace that.  And unknowns can stress us both out.  And we have So. Many. Unknowns. right now in our life.  So many unknowns and so much that is out of our control.

And while we have made peace with our current situation and our sweet Trisomy 18 baby, we also realize that at some point in the future, we will have a lot of decisions to make.  And although we can not foresee all of the decisions we will have to make and we can not predict the timing of this situation, we are trying to plan anything we can ahead of time to help ease the burden in advance.

One of the things we discussed checking into prior to "needing" to was funeral homes and cemeteries.  We have only lived in Indiana a few years and so we are not very familiar with our options.

We are not trying to bury our baby who isn't even born yet!  But we are trying to at least eliminate one or two decisions prior to the time.  We know we will need to choose a funeral home and a cemetery at some point.  So while we aren't making any arrangements right now, at least narrowing down our options, we felt, could help eliminate a bit of stress and hopefully allow us to plan as much as possible.

So we set aside an entire morning on September 17th, 2013 when both of our children were in school to go and look into a few options.  After doing a little research we narrowed our options down to 3 funeral homes and 2 cemeteries to go and visit.

At the first funeral home, the gentleman was very nice, kind and understanding.  He walked us through a few options, gave us a price list and gave us contact information for one of the cemeteries we were considering.  He walked us through the costs and what to expect and he told us that they discount services for infant arrangements, which is a sweet and tender thing to do.  We left their with a price list, knowing what services would cost, and an overall good feeling for the facility and its employees.

The second funeral home couldn't have been any different.  The woman was a bit cold and even though we made it very clear that we were interested in getting pricing information so that we could plan, we got nothing.  We were told she didn't have her pricing available.  Uhm.  We were at a funeral home.  Who doesn't have funeral costs available!?  So she told us she would get pricing together and let us know.

Alright, I have a few problems with this.  One, what if it was several months down the road and we were trying to actually plan a funeral due to immediate need.  Would I have to wait for an email from her to get my pricing!?  Or does she just want me to agree to it and they will send us a bill later!?  Two, I felt like I was trying to negotiate for a used car.  Even though there were no prices talked about at all...I still felt like there would be hidden costs and fees and like I was dealing with a somewhat sketchy funeral home.  Third, this was the least effective way of managing a business that I can imagine.  I am there, I will need services, hand me a price sheet, discuss it with me and go on to your next appointment.  Instead, they spent the time to meet with us and then she will need to go and price it out and get in contact with me, again!  This is not an efficient way to do business in my humble opinion.  Sigh.  (As an update, it has been well over two weeks since our apt with them and we still have no pricing.  Yeah, won't be going with them.)

I am not saying they were trying to be dishonest.  But I don't understand why they wouldn't be upfront with their costs for certain services.  And we both felt like their lack of upfront honesty was perhaps a sign that either their fees were not competitive or that they were hiding something.

We did not feel comfortable with this funeral home at all nor did we get a particularly great feeling from some of its' staff.

They did however put us in contact with the second cemetery that we wanted to visit.

So off we went to visit a third funeral home.  And this funeral home fell somewhere in between the other two.  The gentleman was nice and friendly.  But we could not get pricing out of him either, we could actually barely get in the front door!  Even though my husband repeatedly said that we were looking for pricing in order to plan, we were told that "Oh we will just send someone over to do that at no charge...The costs will be very minimal.  We just want to help you during this time.  The costs will be minimal."  But then when we asked about a particular charge we knew might incur we were told "Oh well the typical fee for that is $100.  But sometimes we can waive it."

Hm.  Ok.  So how many "typical" fees are there that we were not told about?  And what are the criteria for them being waived?  And again, we left not knowing a single cost from this place.  I don't think they were trying to be dishonest either, but telling me that the cost will be "minimal" is all relative!

I know that you can easily spend $20,000+ on a simple funeral!  So telling me it will be minimal means nothing to me!  Does minimal mean a couple hundred dollars or a couple thousand dollars?  Or $8,000 as opposed to $15,000!?  None of these numbers are minimal to us!

We really did think that they were trying to be nice but we still had no idea as to what they charged for anything!

I fully realize that funeral homes are a business.  They need to make money to keep their lights on.  I get and respect that.  Just tell me your costs so that I can plan!!

I also understand that often, funeral homes will deeply discount prices for infants as more of a community service then anything else.  Which is a huge blessing in our live right now!  But I know there will be costs and these costs will still most likely be well out of our typical monthly budget range, so we were hoping to find out what to expect.

So, our decision on funeral homes was made pretty easily.  Being honest and upfront is an important quality to both my husband and I.  You will get far with honesty and up-front-ness with us.  So unless something changes drastically between now and then, we will definitely be using the first funeral home we went to visit.

Next we were off to visit two cemeteries.  Both are in nice locations and we didn't necessarily have a preference prior to visiting them.

Both have different costs, and both change for different services.  But at both, they had an infant section where the plots were free.

But there are still opening and closing fees, vault fees, headstone and installation fees.  And this portion can add up really quickly.

There were things we liked about each cemetery, pros and cons to each.  But after a lot of discussion, we have come to a tentative decision on that as well.

I know it may seem weird to look into these things ahead of time.  And I am sure that some of the people we met with today thought we were weird.  I am sure some of you think we are weird.  And I get it.

This was not our hope, our dream or our plan.  But it is where we are at in life.  And we have chosen to deal with it and find joy instead of hiding from it.

I am not sharing this to sound morbid...or weird.  I am not trying to bury my baby before he is born!  But at some point, our sweet angel will return to heaven and if we can at least know what funeral home and cemetery we will be using, it is one less decision to make down the road.

I will have to make this decision at some point, so I would prefer to do it now, as opposed to doing it rushed and when this is an immediate need instead of a future event.

And without knowing what to expect at all for costs, I truly did not know if I was looking to spend $1,000 or $15,000 on a simple graveside service and burial.  We simply had no idea.  So knowing what to expect is a good thing.

We do know now that this is going to be a big expense for our little family!  We are doing it small, and as inexpensively as possible.  And we are so very grateful for all of the discounted prices that exist for infants.  But it will still be a large expense for our little family to take on.  So, being armed with the knowledge of at least what to expect has helped us find a small sense of peace.

We don't know if our little boy will make it full term.  We don't know if we will get to meet him or how long we will have with him.  There is so much we don't know, so having a few things that we can "know" ahead of time and can at least expect gives a sense of control and a measure of peace in this situation.

Knowledge is power as the saying goes.  And sometimes, knowledge can bring a little less stress into your life.  Yes, we still have to figure out details and how to pay for everything, but at least we know what to expect.

So we have made a few very big decisions these past couple of months.  And while they have been hard, and difficult and I honestly have never shed so many tears in my lifetime!  They are decisions that will need to be made and we are doing our best to muddle through everything we can ahead of time in order to take away some stress later on.

Next up, up are a few more doctor appointments and just waiting.