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75 Days

One year ago we started on a journey whose end would come too soon and whose daily horror show we could never be prepared for and hopefully will one day recover from.466286_10150586099766601_690406600_9237545_882314646_o

Jonathan explained it to me the best just two days ago, he said “Dad, 3/7 is the day we lost Faith”. While technically he was wrong, I understand what he meant. March 7th was the day she left the home she lived in all her life, the community which loved, taught and supported her. She would only return for two days in all that time. For far too many, you would never get the chance to see her again.

I had never realized that. For Sue and I our 24/7 vigil was so consuming, and while life was very different, horrific at times, we still had her and hope.

I don’t know what I will be doing over the next 75 days, maybe more videos, happy pictures. The words come with too much pain now. Time has not lessened the pain or especially for me the memories. They are as sharp if not sharper now then they were then. To give you some perspective, I was speaking with a new therapist that I am working with. I said “Yeah, to think breast cancer was just a speed bump in our road”. The look on her face was priceless. Those words were not mine though, they were Sue’s. Freaking cancer is supposed to be hard, really hard, but in comparison it has been almost incidental.

While I know we have the ability for unlimited love, I also now know that we have a limit to how much we can feel, at one point we reach that limit and are numb.

It’s a new year, another anniversary and time to keep working on healing our Minds, Bodies & Souls.

Paid in Full, I want a Refund

Early on into this whole ordeal I had started to maintain a page on the blog titled “Health is Expensive”. It was difficult to maintain and was not updated. Its purpose was to answer the question/statement we often heard “Thankfully insurance covers that”. This was unfortunately our first rodeo with catastrophic medical expenses. When Jonathan was born he had a congenital heart defect whose “straightforward” surgical repair was anything but that. He had severe complications and we came very close to loosing him. In all we had spent something like 60 days at CHONY, with too many of them in the PICU. Subsequent to that with “traditional 80/20 insurance” and the good old “reasonable and customary charges loophole” we ended up in bankruptcy with over $100,000 in medical debt.

Moving forward from then all our career decisions were not made on location or getting the “dream job” they were made on a job with reasonable salary but exceptional medical benefits.

So here we are eight months later and I’ve finally endorsed and forwarded the last check. I’ve also collected all the amounts for taxes later this year. For those interested here is a look at what it cost and please remember when anyone you know goes through something similar, there is a hell of a lot that insurance doesn’t cover and our medical cost reimbursement is both a blessing and a result of our sacrifice and planning over the years.

From To Days
Hospitalized
Institution Total
03/07/12 03/09/12 2 The Valley Hospital, Ridgewood NJ $61,410.57
03/09/12 03/24/12 15 Morgan Stanley Children’s Hospital,
NYC
$295,059.01
03/28/12 04/06/12 9 Morgan Stanley Children’s Hospital,
NYC
$178,711.62
04/06/12 04/09/12 3 Children’s Specialized Hospital,
New Brunswick, NJ
$14,208.00
04/09/12 05/20/12 41 Morgan Stanley Children’s Hospital,
NYC
$952,914.33
70 $1,502,303.53

These are the out of pocket expense we were responsible for.  These are the only ones I have receipts for, as far as the large amounts of cash spent, No Idea.

Co-Pay $380.00
Parking $975.00
Gas $1,450.00
Tolls $550.00
Takeout Food $900.00
Funeral $8,000.00
Lost Income $5,000.00
$17,255.00

We have been blessed by the generosity of family, friends, community and total strangers who were moved by Faith’s life and death. We will never be able to thank you all enough. I hope we have been successful in personally thanking all of you who have touched our lives, if we missed one or more I am sorry. I have added a thank you page to the website for all who visit for those who we may have never known your individual generosity and more importantly for your prayers and well wishes through a tragic period in our lives.

There are some organizations I would like to point out that helped us. Please consider them for donations in the future and let anyone else that finds themselves in our situation about them.

Nothing is Impossible Foundation The mission of the Nothing is Impossible Foundation is to assist individuals, organizations and families in time of need and financial struggle.

The Ryan Scott Kappes Foundation  The mission of the Ryan Scott Kappes Foundation is to provide financial assistance to families of critically ill children so that the family can remain together during extended hospitalizations.

TJ’s Pizza TJ’s has a dough raiser program to raise money for non-profits and those in need. They ran one for our family in October of 2012 here is the story from our local newspaper

I only wish all your prayers, efforts & dollars could have changed the final outcome. We would have sacrificed our world and more to save our little girl. 466286_10150586099766601_690406600_9237545_882314646_o

This entry was posted on January 30, 2013, in Life Goes On.