Day of Days

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

Farewell to Faith

Faith at age 3 as a beautiful angel & flower girl

God’s Garden

God looked around His garden
And He found an empty place
He then looked down upon the earth
And saw your precious face

He put His arms around you
And lifted you to rest;
God’ s Garden must be beautiful
He always takes the best.

He knew that you were suffering
He knew you were in pain
He knew you’ d never ever
Get well on earth again.

So He closed your weary eyelids
And whispered ” Peace be thine ”
Then He took you up to Heaven
With Hands so gentle and kind.

It broke our hearts to lose you
But you did not go alone,
For part of us went with you
The day God welcomed you home.

Author Unknown

Please join our family and friends in our final farewell to Faith.

Visitation will be on Wednesday May 23, 2012 2PM-4PM & 7PM-9PM

Ferguson-Vernon Funeral Home, Inc.
241 Route 94
Vernon, NJ 07462

Funeral Mass with be on Thursday May 24, 2012 11AM

St. Judes the Apostle Church
4-24 Beaver Run Road
Hamburg, NJ 07419

In lieu of flowers please consider giving another child with Down’s Syndrome the chance at life with a loving family that can give them all we gave to our angel Faith.

A Journey’s End

8 years ago I was elated to share this news with our friends and family:

Please join my family in welcoming Faith Teresa Moor to the world. She was born on November 2, 2003 at 11:14am and weighed 8lb 4oz and is 20 inches long. Continue reading

DAY 41 – CHONY/PICU – END OF DAY

Faith is currently critically stable.  She is super critical but for the moment stable.

What started out as a better day than the one before ended at 4:59 when they were preparing to suction her ET tube and she went into cardiac arrest.  They were all there ready to respond and although they did chest compressions for 5 minutes they believe her circulation and oxygenation.  Her followup blood work shows she “tolerated the cardiac arrest well” even what seems like a statement of madness gives us some hope.

No we nor they know the cause of these arrests. For the moment we live minute to minute, then hour to hour and God willing day-to-day.  Only time will tell.  I’m starting to worry that my little girl is losing her fight.

Sue and I are considering relocating the family closer for the next few days.  We will both not be home, the kids don’t want to be so far away. I cannot make another 100MPH dash back into the city in case of another event.  We will try to make a plan if clearer rested heads prevail in the morning.