Saturday, December 8, 2012

rEcess-ive Trait

 Joubert Syndrome is caused by recessive genes.  It's rare, and the chances of having a second child with the syndrome is one in 30,000.

Beth and Aaron's parents hit that lotto.  Both have the brain malformations typical of the syndrome.  Both are blind, and have 6 fingers on each hand, 6 toes on each foot.  Their feet are malformed as well, so neither will ever walk even if they can develop the motor coordination to do so, which is doubtful.

Three-year-old Beth came in her wheelchair, 6-month-old Aaron in his carseat.  They didn't participate last rEcess because both kids had pneumonia, and both are still a bit stuffy.  Then again, breathing abnormalities also come with the territory of this syndrome.

My assignment was to take care of Aaron for the evening.  It's been a long time since i got to run around for hours with a baby, and he is a big baby -- probably 20 lbs., but little to no motor coordination, so he can't hold his head up well.  He cannot lift his head while on his tummy at all, so he cries if put down in that position.

What he can do is respond to sound.  He loves singing and rocking, walking and hearing lots of fun noises.  And eating, he loves to eat.  After he sucked down two bottles, he finally fell asleep.  We tucked him off to rest and i played with Linda, who is also in a wheelchair.

Every time i do this, i look at my 4 healthy children and wonder how that happened.  This night we had 6 special needs kids, plus their siblings.  It was wild and fun and beautiful, they got to play outside and make a Christmas ornament craft, and those that can't make the craft, we traced their hands onto it and made it for them, so their parents can remember how little those hands once were.

It's beautiful and exhausting and it makes me wish i could do more.


Today is:

Battle Day -- Falkland Islands

Be Someone's Pillow While You Watch TV Night -- a good idea, i guess, especially if it is cold

Bodhi Day (Rohatsu) -- Buddhism (especially among Zen Buddhists, and in Japan, a celebration of the Buddha's enlightenment)

CARICOM-Cuba Day

Constitution Day -- Northern Mariana Islands; Romania; Uzbekistan(Konstitutsiya Kuni)

Dia de las Playas -- Uruguay (Day of the Beaches, a/k/a Family Day or Blessing of the Waters Day; official opening day of beach season, marked with a ceremonial blessing by a priest, as well as sailing regattas, horse races, and more)

Day of the Horse -- California, US

Dita Kombetare e Rinise -- Albania (National Youth Day)

Feast of the Immaculate Conception -- Roman Catholic Holy Day of Obligation; recognized holiday in Andorra; Argentina; Austria; Chile; Columbia; East Timor; Equatorial Guinea; Holy See; Italy; Liechtenstein; Macau; Malta; Monaco; Nicaragua; Paraguay; Peru; Portugal; San Marino; Seychelles; Spain; Switzerland; special observances
     Dia de las Playas -- Uruguay (Day of the Beaches, a/k/a Family Day or Blessing of the Waters Day; official opening day of beach season, marked with a ceremonial blessing by a priest, as well as sailing regattas, horse races, and more)
     Festa da Conceição da Praia -- Salvador da Bahia, Brazil (syncretic celebration of Yemanjá, Queen of the Ocean and the Immaculate Conception)
     Festival of Lights -- Lyon

Festival of Tiberinus -- Ancient Roman Empire (guardian of the Tiber River)

Ganden Nga-Choe -- Tibet (Lotus Lantern Festival)

Hanatoro -- Kyoto, Japan (flower and light festival; through the 17th)

Hanukkah -- Judaism (Festival of Lights; begins at sundown, through sundown Dec. 16)

Hollywood Beach Candy Cane Parade -- Hollywood, FL, US

International Shareware Day

Le Foire aux Noix -- Bastogne, Belgium (annual "Nuts Fair")

Live: Family Christmas at the Benjamin Harrison Home -- Indianapolis, IN, US (Christmas as it would have been during the life of the 23rd President)

Mother's Day -- Panama

National Chocolate Brownie Day

National Day -- Myanmar

National Students' Day -- Bulgaria (studentski praznik)

Santa Marian Kamelen -- Guam (Our Lady of Camarin Day)

St. Kliment Ohirdski -- Macedonia (St. Clement of Ohrid's Day)

Take It In the Ear Day -- a bizarre and unexplainable internet generated holiday; and by the way, your ENT will tell you not to put anything in your ear that is smaller than your elbow

Victorian Christmas Tours at Frank Lloyd Wright Home -- Oak Park, IL, US (today and next Saturday)

Winter Flowers Day -- internet generated, a day to find and enjoy whatever flowers are still blooming right now


Birthdays Today:

Teri Hatcher, 1964
Kim Basinger, 1953
Sam Kinison, 1953
Gregg Allman, 1947
Jim Morrison, 1943
James Galway, 1939
David Carradine, 1936
Flip Wilson, 1933
Maximilian Schell, 1930
Sammy Davis, Jr. 1925
Richard Fleischer, 1916
Lee J. Cobb, 1911
James Thurber, 1894
Diego Rivera, 1886
Jean Sibelius, 1865
Mary, Queen of Scots, 1542
Horace (Quintus Horatius Flaccus), Roman writer, BC65


Today in History

Daitokuji temple, Rinzai line, established in Kyoto by Daito Kokushi, 1326
Biblioteca Ambrosiana opens its reading room, the second public library of Europe, 1609
The Mexican border town Ciudad Juárez is founded by Fray García de San Francisco, 1659
Margaret Hughes becomes the first actress to appear on an English public stage, playing the role of Desdemona in a production of Shakespeare's play Othello, 1660
Vienna's Ring Theater is destroyed by fire, killing over 600, 1881
The American Federation of Labor is formed by 26 individual craft unions, and Samuel Gompers is elected its first president, 1886
The Japanese military police launch a violent suppression of the religious sect Oomoto, 1935
The Chinese Nationalist government moves from mainland China to Formosa, 1949
John Lennon is murdered, 1980
The leaders of Russia, Belarus and Ukraine sign an agreement dissolving the Soviet Union and establishing the Commonwealth of Independent States, 1991
The Cuzco Declaration is signed in Cuzco, Peru, establishing the South American Community of Nations, 2004
Kirsty Williams is elected the first female leader of a political party in Wales, the Welsh Liberal Democrats, 2008
With the second launch of the SpaceX Dragon, SpaceX becomes the first privately held company to successfully launch, orbit and recover a spacecraft, 2010

2 comments:

  1. Yep. I was at a "Shop with a Cop" thing today, and helped a young girl pick out presents. I grew up in a household that I had stable home, two parents that loved each other, and while I didn't have "everything", I certainly wanted for little. This kid was ecstatic about a simple game that was just... special to her, but couldn't be afforded by her foster family. It's odd how you see "how good you have it" when you see someone that may not. (I might have... um... not noticed that she went over $ a bit when she bought the game. Merry Christmas, little kid!) (Yes, I am a soft touch...)

    Cat

    ReplyDelete
  2. Cat, it's nice to know that about you.;)

    ReplyDelete