Tuesday, August 21, 2012

A new room.

This is my favorite blog,....... that i never read.........I found her six moths before Paloma was born, and then again two days after Paloma was born........Her birth story, her girls, i felt an instant connection....."look at how beautiful her life is," I thought, "And it happened to her.".......One year and three months ahead of me......it was like i could look into the future. I read until my eyes were nearly swollen shut from crying......i looked for hints and clues to how Paloma would do....... based on Nella, hints and clues as to how i would do...based on Kellie..........and how beautiful it all looked.
And yes i know that she chooses what to write, and that it is such a small piece of her own reality....but after a while. The connection that i felt began to unravel ...because i am living my entire story....not the most perfect snap shots of hers........

And i do not always blog my entire story either...because i'm afraid........and i'm real....and sometimes writing about the good, feels so much better than hashing out the bad.....but today...just as i thought we had crossed the latest hurdles with Paloma, including  the diagnose of a genetic mutation, ear tubes and othotics for both legs.....all in the past two weeks......another unexpected blow.........and of all people i got mad at Kellie Hampton..........

We found another room......because i went looking.......central sleep apnea.
 And i feel as if the rug has been swept from underneath me. Because now words like neurologist and MRI and brain stem will become part of my new vocabulary.........and because i'm her mom...and because i would fight until  death for her, i have to learn yet another facet of my child's body and how and why it functions......because if i don't, some Dr. will yet again try to walk all over me. .............So if you are wondering why i am writing this....it's because i am real....and while loving Paloma is the sweetest thing i have ever felt.....loving Paloma also hurts more than anything i have ever felt. And i'm hurting so bad i could rip my heart out...........and the thought of it all..........i want to fold.......i want to run away........i'm tired......i'm spent..........and if another medical student or Dr. looks at me and asks about my impressive medical knowledge or how i know so many "big words" i may have to scream in their faces, "Because this my child you idiot! And i have made it my life's work to care for my children! Because i love this baby so bad it hurts.....because if i don't learn all of these "big words" and the names of all the vertebrates in her neck, than you may confuse me for someone who will not question your opinions!"................

So there it is....another small part of the story........And for the record....i am all for spreading the overwhelmingly positive and beautiful side of this story..........but once in a while
the whole truth needs to be told.


I love you Paloma...........my sweet baby dove.....

4 comments:

  1. You are a wonderful mommy.. love you !!!

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  2. Tell them that girl! You are awesome! :) Love your sweet heart!

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  3. My son with Ds has brain abnormalities. His recent MRI showed even more problems. Please know that you are not alone!

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  4. This may be a venter/downer post to you but all I see is the beauty of a mother loving her child so much!!

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