Yesterday we saw the nuerologist, which was a big dissapointment. Of course me and my 1 million questions asked about related diagnosi's and " why yes Amanda, she does have Microcephaly". Well shit. Thanks. I probably should have know that, its proably in her MRI report. Im sure I over read it considering I could barely look at it when we first got it. Now that I am getting better with it I should go re-read it. And now what I am so familiar with neurology terms I could be Dr. G's personal secratery. Fortunatly I am rather fond of him or else my day would had been pretty terrible. That and if Jesse didnt recommend Dairy Queen :)
May 22nd we have to go see the Opthalmologist because her left eye goes inward. She will most likely have to wear an eye patch over her right eye to strengthen the left. I can only picture Jesse wearing one too and playing pirates with her...
If you remember, two weeks ago we took her to the PCP and ER because I thought she could be aspirating. Dr T said she has reflux, ER said shes getting a cold. Dr G said shes probably silent aspirating. Thank you! I never did give her, her reflux meds anyway. Oh other Schiz mammas I can now see the frustration in getting people to listen to you and more of what you have to deal with. Its hard knowing something is going on and everyone brushes it off as over reactive parent. So I am in the process of skipping seeing Dr T and going right for the swallow study. Or just scheduling to see a gastro. Lets pray its not aspirating though!!! I was so confident Ari wouldnt have to go through all of those surgeries and complications, now theres talk of all of that...
A friend of mine shared a poem with me, now I am sharing it with you:
The author of the poem writes: I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I agree this is about how it feels. Although when I first "landed in Holland" it was a terrible place. Maybe I landed in the dead of winter, and now its getting warm and the tulips are starting to bloom. It takes time to fully accept youre not where you had planned to be. But I try to remember, maybe its not what I planned, but I think someone else did have it planned for me. And I am starting to realize, this is better then Italy. Arianna has completely changed who I am and how I view things. I would never take that back.
The only thing I really fear is her being in pain. And I fear people criticizing her when shes older and may look and act "different"
Also, if you havnt seen this, its pretty amazing. I thank people for telling my I am so strong and an inpiration. But this mom is my insipration and I cant even begin to think what shes going through. As aweful as I think I may have it, I have to count my blessings. And I wish I could take all of this away, I wish no child or parent had to go through such things....
http://www.godvine.com/
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