Sophia Carole Brown
TrachKid Profile
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On February 7, 2003 Sophia Carole Brown came to make us a family. She was an extremely loving and loveable child. Everyone who met her fell under her spell. She had many handicaps but was perfect in our eyes. She was not like other children, but a whole other species - an Earthly Angel. She was unable to do many of the things other children her age could do but had much to give and teach us all. Despite her deaf/blindness and lack of mobility, she communicated quite clearly and found her own ways to do things. We rejoiced at every mini-milestone she achieved. She amazed and inspired us all with her strength, courage, and determination to stay with us. Sophia was a great teacher. She taught doctors, nurses, and special educators by doing more, seeing more, hearing more than she was expected to and by recovered against seemingly impossible odds. She taught that "quality of life" is about much more than what you can do.
Sophia's brother Ambrose was born a year after she died. He takes after her in many ways, the most significant of which is that they share the same syndrome. Hopefully he will be the greatest beneficiary of her teaching in that our experience with her will make his course easier. He too has a trach. Please see his profile under Ambrose James Brown.
Sophia and Ambrose's syndrome is called Taybi-Linder and they are apparently the first and only cases ever in the US. It is a terrible and extremely rare syndrome. There are only 34 reported cases since it was identified 40 years ago. Most children die before one year of age.
Sophia was born two months early, weighing 3 lbs., 11oz. At 4 1/2 months old she had her first bout with pneumonia and spent the summer in the PICU on and off the vent. She received her trach for severe laryngomalacia and developed a difficult to control seizure disorder. Over the next year she had two more life threatening pneumonias, complete with complications. She received a Nissen fundoplication (to prevent reflux) and a G-tube. I wish we had done it sooner. She spent 200 days in intensive care the first year and a half of her life and about 60 over the next two and a half years. Ultimately she acquired a virus, human metapneumo virus, which caused complete respiratory failure. After spending five days on "beyond alarmingly high" pressure settings on the ventilator, she died in my arms, surrounded by loved ones. We will never be the same, but will be forever grateful for having been touched by an angel.
I'd like to share a beautiful poem that was read at Sophia's Memorial service:
Legacy
Your smile was not a smile,
But a miracle.
Your life was not a tragedy,
But a gift...
Opening the hearts of those with arms long enough
to reach
Into your near nonexistence
And draw you to light.
Your eyes held a private world
Only those with love could see.
Your stillness was a handicap for others to overcome.
Your silence spoke gentle words
Teaching others of faith, hope, and beauty.
Your short life gave to those around you
More than they could give to themselves.
Your legacy was love...
Left in the hearts of others.--Author Unknown (Sincere Apologies)
Here are a couple of poems by Sophia's Daddy:
Moments of Joy
Palm smeared in paint
Onto paper is pressed
My Earthly Girl Saint
In Pink smock is dressedA hat set askew
Tilts left and folds back
Red kerchief anew
With dots colored blackChubby cheek wet kiss
On my face is so nice
I flush full of bliss
Give her same except thriceThe leaves turn her last name
Miss Sophia Brown
Known far and known wide
In our Vermont home, our townHer total greater than the sum
Of all her parts
Heartstrings she did strum
With the song of our heartsNow ashes in a jar
Her dust on a shelf
Remaining near yet so far
Beaming from Heaven constant signs of herself--James C. Brown
My Daughter My Son
A Hardscrabble road
Lay before her in life
Her pure days were consumed
With struggle and strifeYet she forged her own way
Amassed loyal fans
She promised to stay
Off'ring forth both her handsBut God had a plan
For Sophia my sweet
In Heav'n reserved her
A throne for a seatOnly four years of age
I was smitten by her charms
I Lost My Whole World
When she died in my armsA year bore the scar
From whence my arms she was torn
Till the heralded day
When Ambrose was bornWith much the same bias
His fortunes the same
Big sister parting waters
Stacking odds for his gameWith luck, faith, and courage
His soul shall endure
Guardian Angel Sophia
Stand sentinel at his door.--James C. Brown
History
- Blog
- View recent blog entries
- Member for
- 14 weeks 5 days
Location
- Country
- United States
- State/Province
- Vermont
