We met three of Faith’s classmates at her wake. We wanted to make them comfortable so I remember getting down to their level and Sue asked them what their favorite memory of Faith was or what they liked most about her. All three in one way or another relayed two stories. The first was about Faith the super hero and the second was the Dad corner.

The first was Faith the super hero. Faith was infamously strong-willed and if could not get her way through sheer cuteness she would do so via pure resistance at times. A maneuver we would call the “drop and flop” was where she would drop to the ground legs straight ahead folded in half with hands forward. Can’t find a picture at the moment but imagine the most uncomfortable position for most of us or the shape of a hard taco. This was a very natural position for her and would often sleep in it. The other was plain old laying face down on the ground. I guess the kids saw the similarity to the “super hero” flying position and Faith’s attempt to resistance. In her case at least with me, resistance was not futile.

The second story was the “Dad Corner”. The kids told us that at the end of recess that Faith would run to a corner of the playground and say something like “No, Daddy”. Hence it was given the name the Dad corner by her classmates. When we spoke to her teachers they had no idea about the name but gave us the story behind that particular corner. Faith loved to play outside on the playground. She also didn’t like it to end. She started the habit of running to the farthest corner of the playground at the end or just before the end of recess so she could extend her time outside to the most. Never underestimate a person’s ability based on a diagnosis. She was a very resourceful and creative little girl who knew what she wanted and how to get it.

The Dad Corner

Today was a memorial service at her school. Our family was there with her school family and all the students in the school out on that playground. They planted and dedicated a tree to Faith along with a beautiful bench on a foundation of pavers all donated by a family business that has always been very active and supportive in our community. The tree is a crab apple tree, chosen for a few reasons. One is that it blooms with beautiful flowers from April-May a time we can all celebrate it’s renewed life as we do Faith’s during that time. The second was Faith would always walk with her physical therapist and tell her she wanted to go outside to the apple tree. There never WAS an apple tree on the school campus but Faith insisted their was.

After the ceremony outside we returned to her classroom where we had a tea party.  Faith would always love to have a tea party with whoever she could at home or just her dolls.  “Tea” was usually water from the refrigerator door, so after recess when the other kids had cups of water she insisted it was tea party time.  They dressed one of the tables with a table-cloth, beautiful china that even had butterflies on it and three of Faith’s favorite “healthy snacks”, Chips (from the yellow bag of course), Oreos (centers only for Faith) and Vienna fingers.  It was a proper & touching ending for a very memorable morning.

Well Faithie as usual you were right there is an apple tree and I’m sure now and then there will be a Dad sitting on that bench under it seeing you there for a long time to come.

Video of memorial ceremony today

First, if you have received the e-mail about this post and or are reading it online I’ve done everything right and moved the blog to the new host. It will be much faster, reliable and expandable to do more things.

I will continue to post every few days or as the spirit moves me. I’ve been extremely busy with the move of the website and been feeling extremely cruddy because of a sinus infection that just amplifies my normal daily yucky feeling. So much to do and so little energy.

The first new part of the blog is the Photo Gallery (it’s link is above in the menu bar). I will start loading some more of the photo’s and videos I’ve received over the past weeks into it. There is a lot of work in pixelating photos that have people not in my family and it’s harder than I thought looking through all of those photos.

I have also published about 15 missing entries that were on Facebook but not the blog that chronicled Faith’s days in the hospital. You may have noticed the gap back there between March and April.

I’m also looking at a way of creating a permanent “mirror” of the Facebook group that started all this so it can be viewed by non Facebook members etc. I need to resolve some technical issues and also de-identify all of the entries made by FB friends so as to not betray their privacy.

The “theme” for this site is called Bouquet, I think it’s more “pretty” and fit’s Faith’s personality better. Ironically I picked it for the colors and layout and then noticed that the banner above had three options for the flower types Tiger Lily, Forget-Me-Not and Pink Dogwood (the default). Ironically in a few days a pink dogwood will be planted in front of our home. It was a remembrance gift from Faith’s Aunt & Cousins in California.

Back to the title of the blog “Days of Infamy”. There have been many in our lives starting with our wedding December 7, 1991. Yes the 50^th anniversary of the original “Day of Infamy”, we didn’t plan it that way just happened. Our wedding was anything but infamous, it was a very good day and all went very well, you see the pun though.

As I was getting ready to move the blog over tonight/this morning I was updating some of the old blog entries that had not yet been published and noticed the date June 7, 2012 some significant world events happened on this day in the past. Our most significant was when our first-born child, Jonathan, who at 10 months of age had his first heart surgery on June 7, 1995. That day started out with the normal anxiety any parent would feel having to place their young child into the care of a surgeon who was about to open them up and repair a broken heart. Later in the day many hours after the surgery should have been completed a team of doctors brought us into the infamous “Green Room” at what was then Columbia Presbyterian Medical Center Babies & Children’s Hospital now known as CHONY. They informed us that although the surgery went very well and Dr. Q. was able to perform the fixes he needed to there was a problem. For any open heart procedure you need to be placed on bypass, a machine that will take over for your heart. They cannot obviously work on a heart that is both beating and circulating blood at the same time its doing it’s job. The problem they told us was that when they were trying to remove Jonathan from bypass he would immediately go into heart failure. It was not that his heart was not beating but rather when it became time for it to perform the job of pumping blood on its own it could not and they did not know why. We were then told that he had at best a 25% chance of surviving.

We had the choice of two hospitals in NYC that could have performed the surgery back in 1995, one was Cornell Medical Center and the other Columbia. We chose Columbia because of the relationship we had with Jon’s cardiologist even though we had strong reservations, Sue had previously worked on their cardiac floor with mixed experiences. We were led to Columbia though and that was our final decision. The team offered us a short-term fix to get Jonathan through the next few days, it was called ECMO, another kind of bypass originally used in neonates but something they were willing to try. Columbia had two ECMO machines, Cornell had none. One small problem, both ECMO machines were currently in use. The solution was to piece together a third and enlist many perfusionists (the folks who run bypass machines) to sign up for overtime to work the machine 24 hours a day. They now have a whole team dedicated to ECMO with 15 machines available and many times in use at CHONY. We were told that this was a temporary fix and if they could not fix the underlying problem in 7 days they would not be able to continue and he would die. It wasn’t because of staffing or cost but simply because the data at the time showed that any time past 7 days on ECMO significantly reduced the probability of “positive patient outcome”. The next week is fondly remembered as “hell week” with so many ups and downs. It finally ended with what we sometimes call Jon’s re-birth date of June 14, 1995, the day he was able to come off of ECMO and his chances for survival were greatly improved. He had the title of “sickest child in the hospital” for too long and we were more than happy to give that title back. Sixty (60) odd days later we were done with hospitalizations, surgeries, etc and back home with our child. If you have ever heard us refer to Faith as the “easy one” this is why. Although she was born with Down’s Syndrome she had absolutely no heart defects so we thought our life with her was going to be a walk in the park compared.

Ever since the events of “hell week” Sue and I both either consciously or sub-consciously become anxious on the subsequent anniversaries of those dates. For many years we would ensure that we were away from home on some time of mini vacation (before the kids were in school) to make sure we were distracted. It’s only been 17 days since Faith passed and now another anniversary. I don’t know if her’s will eventually overshadow the events in Jon’s early life. I can only hope. I don’t look forward to “Hell Month” (May 20 – June 14). Only time will tell.

To better days…

After Faith had her first cardiac arrest the week before her death a doctor not known for explaining things in simple or terse terms made his job very easy to understand. He told us his priorities in this order Brain, Heart, Lungs & Kidneys. As an ICU doctor those were the major organs in that order that were a priority to save and their interdependence is very easy to understand. The day after her first cardiac arrest she was placed on continuous dialysis because of Acute Kidney Failure. We knew the road ahead was going to be long and tough but that there was still hope. That was the sleepless night that I wrote the entry “A Journey’s End” originally titled “NEVER POST” with safeguards in place to make sure I would never accidentally publish it to the world. If you ever looked at the URL for that page it still retains the original title http://faithsfolly.com/2012/05/never-post/ .

A whole week passed before the lungs & heart began to fail in different ways and finally when her series of cardiac arrests began we knew at that time that we had in fact lost our Faith regardless of how many more times they could resuscitate her body and push endless drugs to keep a frail body whose soul had already left alive. Our final decision had already been made we now just needed to accept it.

My strategy after that day was to plan our healing in this order Mind, Body then Soul.

• MIND: Before 24 hours had passed we had an appointment with a doctor who gave us the skills and tools needed to help our minds sane, deal with the intense emotion we were and would feel over the following days. We are all at different points on that road with Jon having the hardest path having the least developmental maturity. Just days before Faith’s admission to the hospital he started at a new school that would better suit his needs, he had been suffering almost 2 years of daily anxiety in his current placement, we fought hard and long for the change but he has not yet to this day been given the chance to fully transition under the right circumstances. Next week and the final weeks of school will be his chance to do it right this time.
• BODY: The past months have been spent on Anxiety, Caffeine & Adrenaline. The human body is an amazing thing giving you what you need when you need it most. It also hits back quite hard when you don’t treat it right. I don’t speak much of myself to those who even know me. I’ve been medically disabled since 2007 and live with chronic pain every day, some days are better than others, some worse. Of the remaining five of use both Jessica and I have developed sinus infections with early signs of bronchitis. I took care of her first and she is on the mend, took care of me today but my recovery is always slower because of my underlying conditions. It’s 2AM again, another sleepless night and a 101° fever. I’m most thankful for the symptom free days I had while caring for Faith so I could be there for her and my other children as much as possible. I was on the phone with my lawyer this morning because once again the insurance company that pays my Long Term Disability insurance is looking for anyway out of their obligation to our contract. My lawyer asked what a “typical day was like”, it was hard not to laugh. I don’t think I’ve had one of those it at least 18 years. We are all now attending to our health after keeping it second priority to Faith’s.
• SOUL: This will be the hardest and longest journey for all of us. I never expect that gaping hole left by our Faith to ever be filled as the holes left by her three sisters/brothers who preceded her have never healed. Seven children 3 here on earth and 4 in heaven. I don’t know how to proceed on this path yet but expect it to be the hardest journey with the most challenges.

Today Sue decided to go on a field trip with her students to Great Adventure, bus loads of high school students in an amusement park (sounds crazy to me). She realized how little air and sunshine she has seen over the past 3 months. Upon walking into the park a song was playing. one of Faith’s favorite bedtime songs You can’t stop the beat from Hairspray was playing. Faith’s favorite part was the “shake and shimmy” which she would perform for the nurses often even with sedation during her hospitalization. Sue thinks it was her way of saying it was going to be a good day, and it was.

I said we would return back to “normal” this week and boy did it start out with a bang.  Been extremely busy since Sunday.

My promise to you and Faith to keep this going will never be broken.  I’ve already setup the blog on a new web host for more speed and flexibility.  I’ve been back-filling all the stories for all 75 days, this all started on Facebook so there is some more stuff that never made it here.

I’m also prettying up the blog a bit because Faith deserves it, and trust me she has still be in my head.  I’ve been taking notes and making outlines for many more entries.  They are coming.

Please take advantage of the “Subscribe to this blog” on the right of the screen.  I will never use your e-mail for anything else and you will be notified as soon as something new hits the blog by just checking your inbox.

A very special card came in the mail today from someone we know pretty well.  Her daughters and their friend had setup a lemonade stand before Faith’s death to help our family.  Upon hearing about Faith’s death they insisted their Mom send us a check with the money they earned.  I’m pretty sure the oldest might only be in third grade.  Again a sign of hope in a crazy world that there are such good people raising such wonderful children.

Thank You Caroline, Lauren & Katelyn

Isaiah 11:6

The wolf will live with the lamb,
the leopard will lie down with the goat,
the calf and the lion and the yearling [a] together;
and a little child will lead them.

There are so many things to remember today, but let’s keep our focus on the countless men & women who gave their lives so we could have the county we do. Freedom has made our country the greatest on earth, it guarantees opportunity not outcome.

This blog will continue, yesterday was spent getting a new more powerful host ready that will allow me to take it where I want it to go.