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.