Cornelia de Lange Syndrome (CdLS) - July 10, 2012

I have met a mother who defies every sense of the word, impossible.  She has been driven to deal with what most of us could never fathom, for a minute, a second or even a millisecond.  She is the superior essence of a mother.  Her daughter has Cornelia de Lange Syndrome (CdLS).


We count ten fingers and toes, when our babies are born and wonder whether they will thrive in life.  She probably wonders what she can do just to keep her daughter alive.  Thrive has a different meaning.  It represents the life of her child, another breath and a long future.


Often times when I see her, and it’s not so often, I complain how tired I am.  She never objects.  She smiles and accepts it.  There is no rebuttal that her life is worse or she is weary of what might happen in the future.  She just acts like she can relate.


But, I don’t believe it’s an act.  She has the ability to step out of her strife and listen.  She completely accepts how ridiculous I must sound.  I believe she finds compassion and empathy in everything simple that surrounds her.


There is always humor and comic relief, even when she has been holding her baby for 3 hours straight.  Her baby is so small and likes to be rocked.  Her baby doesn’t like the baby Bjorn or wrap.  She likes to be held and swayed.  For a long time, she was just too tiny.  My friend doesn’t complain.  She just glides her baby back and forth for hours.  Her arms get tired, but she just repositions.


Even in the face of special needs, she remains calm to overcome her daily grind.  It’s her routine and she is adjusting to it, no matter how insane it may seem.  She is a fighter without any tape or gloves, just bare knuckles.


She has found a perfect match and unity with her husband.  They are two perfect puzzle pieces fit together bound by Krazy glue, minus the crazy.  They have risen to this challenge, together, completely.  He never leaves her alone, when the situation hits a snag, like 5 days in the hospital with an inadequate nursing staff.


We all fight over our stupid marital issues, so simple in nature.  Who will play with or teach our kid, when we’re both tired?  Who will remember to take out the trash without being asked the question?  Who will be romantic on a certain day or even remember the date of a previous and momentous occasion?  They are always fighting together, not against each other.


Her questions are so much greater and they deserve an answer.  Most of ours don’t even warrant a small sign.  She deserves a voice to tell her how to deal.  It should be screaming loud and clear.


It’s probably hard for them to find a kindred couple.  This syndrome is so rare that it doesn’t even count in the list to check during amniocentesis.  It only strikes 1 in 10,000 to 30,000 newborns.


My thoughts and prayers are with her, even though I don’t believe she needs them.  She is strong enough to carry her daughter through this situation and still smile, maybe even laugh at times.  Inspiration is just who she is, even though I believe she has no idea.


Every time I worry about something so simple that my daughter does or is subjected to, I now think of her.  Just observing her experience and how she handles it makes me fight to be brave.  I always tell my 3-year-old to persevere in the face of adversity.  I want this to be one of her mottos throughout life.  My friend is a prime example of this and I’m proud to know her.


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