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.

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