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.

The following was written and presented by Faith’s big sister Abigail at her funeral mass today. No further words are needed:

Eight years ago on November 2nd a little princess was born. The name Faith only seemed fitting because we as a family trusted in God’s plan for her and our family.Before we knew she was a girl we had a bet going. Jon wanted a boy of course, Jess wanted a girl and I wanted a potato with carrots for arms and legs, where that idea came from I have no idea. We surely did get the world’s cutest little princess and we sure did get a potato. It’s funny how it worked out that Faith’s favorite food would be chips and french fries and she would be the second best couch potato, next to dad. Faith was lucky she was born a healthy little baby with something special that couldn’t be fixed, Down Syndrome. Faith required some extra help like physical therapy and speech but she was quick to learn and overcome her obstacles and challenges. Faith grew up to be a cute little girl with her own obvious likes and dislikes with subtle influences from her siblings. Faith liked going to see trains with Jon and dad but she also liked playing basketball with Jessie. I taught her all about makeup, nothing about hair though, and she even knew the names of things and exactly how to use them. She loved to do what her brother and sisters did. Faith though had her own distinct likings as well. The greatest would probably be swimming in big pools or at hotels. She also loved Spongebob and Toy Story or Toys as she would call it. Her Woody doll was her best friend and stayed by her side everyday. Faith’s favorite vacation we went on was back in November when we went to the Great Escape Lodge in NY. There was a lazy river that Faith spent most of the trip floating around in,swimming under the waterfalls and pushing us along in the floating tubes. Everyday after she would mention that weekend and sometimes we would catch her with a laundry basket filled with pajamas, socks and bathing suits and empty dresser drawers next to it because she was packing to go on another vacation. She loved to play tricks on people. Sometimes I would go to give her a hug and I’d feel her reaching in my back pocket to grab my phone or when dad was busy she would grab his phone and play with it. Just the other day mom was looking through her closet and found at the very back a hairbrush that we were sure was long gone, nope Faith hid it to avoid the oh so dreaded hair brushing. She also was quite the talented Chapstick thief: when you eventually got it back it wasn’t something you wanted. She loved to play games like hide and seek, although she wasn’t great at hiding: she loved to yell out “I’m here” when you were looking for her. Faith was also a great helper and she loved to do anything you asked her and she did it willing with a smile on her face. Faith had a special heart that touched anyone that met her. There’s no mistaking she was like her brother and made friends with anyone and everyone she met. Faith was a strong fighter who had quite the punch. Faith was very close to me and my very best friend. She was my little princess and my inspiration to want to become a special ed teacher. Faith taught us so much while she was here and the memories we made will certainly last and be remembered forever. She had an important mission and purpose what it was exactly I’m not sure but if it was to spread love and happiness she most certainly did. Although it’s hard not having her here everyday I know she is much happier in heaven and helping to serve a very important plan.

I Do Not Think My Song Will End

I do not think my song will end
While flowers, grass and trees
Abound with birds and butterflies
For I am one with these.

And I believe my voice will sound
Upon the whispering wind
So long as even one remains
Among those I call “friend.”

I shall remain in hearts and minds
Of loved ones that I knew,
And in the rocks and hills and streams
Because I love those, too.

So long as love and hope and dreams
Abide in earth and sky,
Weep not for me, though I be gone.
I shall not really die.

–Johnny Hathcock

Yesterday was a day I will remember forever for so many reasons. It was as I thought the hardest thing to see my baby’s cold and lifeless body in her casket and we are so relieved we stood by our decision to keep it closed for the wake. The stories we heard were always of her smile and bright personality. Those were captured well in the photos we chose and that is how she was and will be remembered.

For a little girl who only began to use words well six months before she became ill, she spoke volumes to the world she touched. It is obvious that it wasn’t what she said to others but rather the way she lead her life that was an inspiration and example to everyone else. There were countless people who showed up that only crossed paths with her briefly in this life and were still moved enough to remember her and feel the need to pay their respects to her and our family.

Everyone said they don’t have the words to express their sorrow and there are not any. We thank you all for your appearance there yesterday as it affirms that she was loved by others as much as we love her.

Near the end of the night there were 3 classmates that were able to come. One brought her a small toy, a boy insisted to his Mom that he had to come for Faith and a girl gave us the card below. No words can express how we felt for each of them.

I can only hope to make as much of an impact on the world with my words and actions in the years to come as my “quiet” little girl was able to in her short 8 ½ years by her actions alone.

Well done is better than well said. — Benjamin Franklin

It’s the day every parent has nightmares about. The day you must prepare to bury your child. I told my wife Sue last night that I didn’t want to go to sleep because it would only make this day come sooner. She insisted we both needed rest for a long day ahead and if one thing I’ve learned in our 20 years of marriage is that she is always right. Sleep did not come easy for me last night. It’s 4:30AM and I’m not able to sleep any longer and feeling the inspiration to write. I’ve always hated writing. It was the last thing I’d ever want to do in school, I was frightened to death to have others read it for fear of critical acceptance. This may be Faith’s gift to me to be able to freely express the feelings of my heart and mind and to share it with the world. She was only beginning to speak with words before she was taken back from us. I will be her voice and allow her inspiration to be expressed through my words and writings.

Today is a day I fear so much. I’ve already said goodbye to my little girl the day she died. I was there with her before during and after. I do not want to see or think of what they did to that precious little body to prepare it for “presentation”. I somewhat understand the need for others to have the need to have the shocking realization that she is truly gone. A decision I made for myself and we made for our child is that her coffin will not be open for viewing. The body she left behind is not the Faith we all know and love it was only the imperfect vessel for a perfect soul to make her mortal journey here on earth. Her guests will be greeted with beautiful pictures of her face & smile through all her 8 years with us along with a photo video put to music that perfectly describes her and what she meant to the world.

She will be given her final sacrament in the religion we raised her just 12 days after she was to make her first penance & communion. This precious life was baptized in Christ, received anointment of the sick and will finally have a Catholic funeral. She will not be buried in the earth, we have decided upon cremation. We will hold and care for her earthly remains as her parents on earth until finally one day Sue and I see her again and we will be interned together for eternity.

I’ve been asked by one very special family of a very special friend to Faith to continue this blog. My intention was for it to end with Faith’s death. But I still believe that the spirit and soul of Faith lives on and so will this blog. It will still be “Faith’s Folly” because the word folly and all its meanings fits the events of the past months on so many levels as I hope to reveal over time. “A Journey back to health” will become “Journey of Faith, Healing and Celebrating Life”. I don’t know how often Faith will inspire me to write, she as others knows me too well, as I need some outside pressure or fire under my ass to get from the beginning to the end of projects.

Please continue to pray for my family and me, for peace and understanding over the next very difficult days to come.

When you were born, you cried and the world rejoiced.
Live your life in a manner
so that when you die the world cries and you rejoice.
-Native American Proverb

The Good

• Faith is breathing on her own. She is breathing a mixture of O2 and NO which is therapeutic and helps keep the blood vessels of the lungs open and flowing.
• Starting about 7PM on Friday her “distressed” breathing pattern changed to a more normal one, less labor and a slower rate.
• Sedation has been cut quite a bit:
o Reason 1: One side effect is a slower/irregular heart rate which she started to have on Friday/Saturday night. Resolved after reduction in sedation.
o Reason 2: It’s for her comfort and compliance, as long as she is comfortable and is willing to mostly cooperate with what needs to be done we can use less.
o Cute story. Her nurse and I were doing something Friday night with her and she was struggling and got her nasal cannula out of her nose (Still taped to cheeks). I saw her hand headed for it ready to rip it from her face, stopped her and told her no. A few minutes later same circumstance, I wasn’t quick enough to get the hand. To both of our surprise she used her little fingers to push the prongs of the cannula back into her nose. I guess it helps and she gets it.
• NO vascular surgery. There is currently no benefit that outweighs the risk of either thombectomy or putting in a vascular filter.

The Bad

• We are suspicious that she had a bleeding/clotting disorder before surgery and before the central line was ever placed. Parent intuition. The ICU attending shares our suspicion. While not pertinent to current care it will affect future care.
• Now that surgery isn’t an option they will be transitioning from Heparin to a longer lasting more stable form called Low Mollecular Weight Heparin (http://en.wikipedia.org/wiki/Low_molecular_weight_heparin) specifically Lovenox (http://www.drugs.com/lovenox.html) . This is going to mean daily injections (2 a day) for the next 3-6 months.

The Ugly
• NONE — Lets keep this empty!

Treatment:

• Sedation much lower than before, more waking hours, eating by mouth and keeping active but in bed.
• Changeover from Heparin to Lovenox.
• O2 with NO
• Continue Wean from narcotics withdrawal from prior encounter at ICU