- Some people see Bella and see a syndrome
- Some people see a medical record number
Sometimes I feel like Horton (from Horton Hears A Who). Am I the only one that hears her yelling, “I’m here! I’m here!”?
I comfort myself in knowing that she is a beautiful, alive, and vibrant soul. Everyone who takes the time to know her, loves her. Who wouldn’t? She is my Bella and I love you babe.
Monday she had one of those icky viruses going around. We didn’t even bother to dress her up, just new jammies. She cried and cried. I gave her this puzzle and snapped the picture and it was back to crying. But by Friday she was her happy self again.
We moved her bed so she can look outside and get some vitamin D. Of course in these pics, she is admiring herself in the mirror. Can’t you just hear her say, “Yes?!?!” in the first one?
Playing in therapy. I was blown away that she even tried to do these pegs in a bottle. And we took her outside – beautiful outside. The girl loves to swing!
Reading with Sissy
We went to a post op with ENT this week. And I spoke with the director of outpatient services. Sorry, but if my child’s wheelchair doesn’t fit through your waiting room, then NO, you are not handicap accessible. He assured me that would be looked at and fixed. Sigh. At a children’s hospital? New campus. Not a good excuse. Anyway, ears look good. Wants an ABR. Oh, and she lost weight again. Another sigh. But meanwhile she is beautiful and we love her.
Oh my gosh, a childrens medical building doesn't fit a wheelchair! Hello, who built that?
Oh it makes me so sad that people don't see Jax. With us, its not even the DS that they see, its the brain injury, and thats it! His doctors don't think we should put him through any more surgeries. Either I'm in denial, or I'm just more confident. But I feel that even if he needed open heart again, that he would fly through it. He has always done well with surgeries. And the pain of surgery is only a few days. I guess I see my boys smiling more, and interacting more, and I'm not ready to give up yet!
First,the pictures from the previous post ... to die for!!!Her hair is amazing,just as she is.
And boy do I understand the over site on the magical person vs the medical record/diagnosis'.Even outside the medical community.I have decided to not go through Zoey's litany of life's medical hurdles if she isn't present.Because when I do,I get this look.Resembles pity and I so do not want pity.I want people to see her beautiful happy face.To receive one of her amazing hugs and be blown her patent kisses and see her,for the incredible child she is,despite her obstacles.
Your Bella is a miracle and I have been so honored to watch her grow since that wee little baby!
She is beautiful! I can't believe how long her hair is...gosh she's amazing! Hang in there mom!!
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