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 https://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.

For those of you who could not or would not attend the wake, with complete understanding, here is the video collage I put together as a tribute to the Faith we all know and love. The way we all should and will remember her. I am also posting this for all those professionals who took care of her over the past few months without the ability to really know their patient.

Continue reading →

As the parents of special needs children we are accustomed to the stares. Everyone does it, sometimes because they are so damn cute, most often because they are “different”. It’s the same human compulsion that makes people want to see the accident at the side of the road and the carnage of metal and man. Kids do it because they are curious and want to know why that girl or boy is different. Why adults do it is still beyond me, perhaps pity or because they have a special connection in their life and receive the same joy as we do from these special people. Here is a comment left on the blog that I want to make sure everyone reads because it is honesty from a child:

Kristina was one of your class mates. She came home one day and told me [mom] there is the beautiful girl in my class named Faith and told me how she helped guide you with work etc. Kristina said mommy this girl has a disease and some children don’t bother with her. Kristina then turns around and says mommy all children are equal and should be treated the same. During a Halloween parade at school she had pointed out to me who Faith was and after I saw that precious little smile on Faiths face I knew deep down in my heart my daughter was right. Faith you are a child from God and I pray and hope you fight and keep that special smile on you face in this world and the next. God Bless you Faith..

A long running argument I’ve always had with my Mother is that when my time comes. My final preparations are really simple. Comfortable clothes, heck a t-shirt and underwear or nothing at all are fine with me. Let my remains at least be comfortable. Who the heck wants to wear a suit for eternity. As for all the glamor of a funeral a cardboard box will do just fine and no wake. Her argument is that everyone needs to see the body as a form a finality to know that person is dead and pay their final respects. My opinion is if you didn’t take the time to do that in life you too late and only doing it for yourself. When we announced that the casket would be closed for Faith’s wake we got a few looks from family, but most were smart enough not to question us. Having experienced this my only opinion that has changed is it is important for the family in our case the parents to know exactly how much of an impact our little girl made on the world. So as for the wake I’m glad they all got to see the Faith they knew and loved, and am so overwhelmed with the outpouring of support and stories from some people I have never even met.

We all need to look past the body and look to the souls of the people we meet. Martin Luther King, Jr. once said “I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character.” this is what it’s all about people. We come in all different colors, sizes, shapes & religions. With the exception of my son Jonathan who again is wired differently with Williams Syndrome who don’t know the concept of stereotype we unfortunate “typical” people do. The next time you meet or are privileged enough to have a person with “special needs” cross your path in life take the time to know the soul you are interacting with and not just the body.

I will share with you my very personal and last experience with Faith’s remains on the day of her funeral. As a family we were there to say goodbye to her one final time. My gaze shifted between the beautiful smiling picture above that represented the Faith we all knew and loved and the very cold lifeless body that laid in the coffin and I knew it was the soul I cherished so much, not that little body. Her smile was gone, the glow from her eyes was dimmed when I gave her one final kiss on her head she did not smell like the Faith I knew and didn’t fight back like the Faith I loved so much. There was one in my family and we knew who it would be who walked away from the open coffin to say “She looks so peaceful, Like she is sleeping”. Anyone who really knew Faith knows she was always a force of nature and “peaceful” was not an adjective I would ever use for her, she was strong, determined and rarely took no for an answer. Faith was officially pronounced dead at 7:28PM on May 20, 2012. Many hours before that she broke through a medically induced coma and paralysis for just enough time to open her shining eyes look at both Mom and Dad and move her little lips in what we hope was either “I Love You” or goodbye. That was our Faith and that is when we said our last We Love You and to either fight or rest, we will always love you and be with you.