Thursday, November 18, 2010

Photo Carnival Favorite Photo

This is my first favorite photo of Sylvie... we were outside in the garden (I think she is about 9 months old) and I put my hat on her because her hat would not stay on.  She got so happy and so we came in for a photo shoot!  It was the first time I truely got her looking at me with a camera and caught that grin full on!  Thanks to the EXCELLENT blog Love That Max.  I am a beginner not much here yet..hopefully I will get more in the swing...There is so much to share about life with Sylvie.  I have found such great support from other blogs that I hope I can contribute for others some day..

Monday, September 20, 2010

Kids That Need Special Moms

Well on Friday we had The Woot's we wait.  The crazy thing was that the MRI went very well (in all terms really).  Woot did very well, minimal tears and mom and dad did great--no tears!  We got a dose of reality on the day as she was waking up after the test.  In the bay next to us in Pediatric Sedation was a mom and her son.  She began to tell the nurse a medical history and I overheard her talking about the 18 surgieries her son had had.  I suddenly found my empathy that I thought I had lost in this past year of medical crap.  I wanted to go hug her, and give her a medal.  I wanted her to be given a miracle, not me.  I began feeling thankfulness, not because someone might be more miserable than me, but because I could feel empathy for her in a way I never was able to access pre-Woot.  She was so strong, so amazing.  Is that me--am I strong and amazing too??  I guess I am.  I am a better person, and my girl has no tubes, no holes that are not supposed to be there. All along I have been thinking "I should be thankful".  I should be thankful for her beauty, her smile, her skin, her heart, her toes, her poop, her belly, her everything.  And now--I feel it--I am thankful.  We all have such gifts in our lives.  My gift and other moms like me--our gifts are disguised and hidden.  Hidden behind tubes and seizures, doctors and fears... we search, we greive, we pray, we love-- and on the other side is our child.  The miracle that we were already given. Even if tubes and holes come into our future...we can search again and find the new gifts they will bring.  They are not "special needs" kids, they are kids that need special moms! I am on my journey to find my specialness.  I discovered a piece in that sedation unit thanks to a very special mom I may never see again and I never have spoken to, thank you! 

Monday, August 30, 2010

The Woot, the yuck muck, and the goodness

The Woot is my daughters nickname.  Actually, it is one of many nicknames.  What is it about some just want to give them nicknames...out of love and respect, or maybe just cause they are so damn amazing??? The Woot is currently in her bouncy seat ( I could write volumes on how wonderful this chair is and also how much I hate it).  She is she often does.  She is a patient girl.  How to describe this Woot??  Well, I have been thinking how some days are dark and some are light (and some are grey...but lets make this easy shall we).  On a dark day, a description would be so different than on a light day.  There are also the two types of people, those who know the Woot and those who really don't (or are having a temporary lapse of sanity, which sometimes is me).  Here goes--the two tales to describe the same kiddo...or.... a tale of two Woots!
Well, today she is smashing in her pink onsie.  She is a bit floppy, a bit stiff, and definitely google eyed.  She has a perfect pink tounge which shows itself often, and hair that looks like she dropped some coin at a proffesional salon for hipsters. She is willing to chill while I blog and expects only some hugs, kisses, songs, and milk every three hours.  What a treat to be her mom!

And then...the other..

Well, today we began the day at 9:30.  We got the bottle in, which went relatively quick, no coughing and sputtering.  Her eyes are not focusing, soemtimes she is pretty spacy and I don't even know if she realizes I am here until I say something out loud.  We gave her a haircut last night so the mop is more tamed, but still we have the bald spot in back and the stick em ups all over--the wild Wootie mane.  Still, she is not able to support her head and her arms are fixed straight most of the time.  Here we are, mom and baby.

At one year I still visit this later, less appealing camp.  The place where all I see is my daughters disability and the ways we are different from other moms and babies.  It is nothing I am proud of, but somthing I cannot hide.  The dark days are less severe than they used to be and most often she and I can pull out a pretty decent day even if for a bit of it we are neck deep in the yuck muck.  Mostly what gets me is her undeniable beauty and spark.  When she grins, she casts a spell on all who are good, and makes them better.  She makes me better and will continue to do so...

I am excited to begin this document all the goodness she will bring.  I welcome followers, advise on how to make the blog better and links to other great sites.  Go....

Wednesday, August 18, 2010

Calling all Unique Moms on my daughters first birthday (moms of special needs kiddos)

This is my first venture into blogging. Today is my daughters first birthday.  If you are a Unique Mom, you will understand why I am blogging and not putting the finishing touches on the cake or wrapping the gifts.  My daughter is beautiful, sweet, and I love her so much, but she is not the typical one year old ready for a party.  The cake will be tough since she cannot sit in a high chair, she is not yet able to hold her head up on her own or sit up.  The presents will be a challenge since she is not able to hold anything in her hands or grab for things.  What to do... 

I am blogging to try and find other moms who have faced this challenge or are about to face it.  I will write about our challenges and triumphs.  Maybe even some photos of the little angel child. 

How do you celebrate a day that changed your life in so many ways?  How do you celebrate a day that marked the beginign of the most frightning and sad year of your life? How do you celebrate in a way that is fitting to the most beautiful, patient and lovable child on the planet... Any suggestions???