Yet another visit to the hospital...another surgery under our belts....and more doctors pushing for Emma to be seen by the genetic team. Guess what folks....WE ARE NOT DOING IT!! I don't need someone to tell me that she is not talking yet. We have had every organ in her body inspected. Truly, what would a genetic team tell us that we don't already know? Yes, they may give a "name" to what she has, but I want my child to be known as Emma....not some name to a syndrome! True, that may be a part of who she is, but that does not define my child....END OF STORY!!!
The snow that I was so excited about in my last post turned into my nightmare. Soon after I posted my last entry I had walked into the kitchen, then I heard Emma crying. She had fallen off of the couch. I picked her up and tried to comfort her. It was a cry like I have never heard before. She would not move her arm and she screamed bloody murder and said, "OWWWWW" (a new word for Miss Em) anytime I touched it. So, I took her to our local ER and found out it was broken. We sat for 4 hours while they decided what to do. After talking to Denver about our last "simple procedure" (the one where Em crashed on the table and ended up in ICU), the anesthesiologist decided that he wasn't comfortable doing the surgery (she needed 2 pins put in). So, at 5:30 in the evening we left for our long journey to Denver (a 9 hour drive). The "beautiful" snow turned into horrible road conditions. At one point we had to drive 30 MPH for 60 miles! UGH!
Well, 3 nights in the hospital and a purple cast later Miss Em is on the mend. This stay in the hospital has made my heart feel a little more raw. That is the only word that I can describe. When you think of a broken arm you think of a "normal" kid thing, but having a 9 hour drive with doctors mentioning genetics on top of it just makes you realize that people cannot just accept that this is our "normal" for our little girl. Everytime I think that my heart is healing....someone else stabs me. I accept her for who she is, and I expect everyone else to do the same. Is that so wrong????
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4 comments:
Oh Emma, I am so sorry you fell off the couch. Ouch!
That car ride sounded awful.
I am total with you mom on the whole genetic thing. Who cares what the label is--it won't change who Emma is.
We have a label for Miss E and I blog about it often, but it doesn't define her as person. It is merely the formal makeup of her genetic screening that dictated the results.
She is still Miss E in our house.
I too would love to have words. Communication is difficult.
Enough rambling already...
It's not so wrong. I have gone through phases of wanting to have a name for my son's issues outside of ACM1, and NOT wanting to name "it". I waffle constantly. But I DO love him for exactly who he is, every single day that he wakes up. When it came time for him to start special ed preschool, I made a rule that the school could do all the tests they needed to, but that I DID NOT want the results. They could use them how they wanted to, but I was in no way shape or form to be given the results. I don't need them, I know he's developmentally delayed.
I'm so sorry about Em's broken arm and that awful car ride! I hope that her arm and your heart heal well, and soon.
ok Angie..we really need to see the cast..I bet she is just beautiful with cast and all..she is just so beautiful..with a great mom!
What if knowing would bring options to you that you don't know about? I'm not arguing with you on your decision, she's your daughter and I may make the same in your situation. But what if knowing the NAME of what is wrong brings you options? What if it brings solutions? What if it just brings more knowledge?
Can't she be Emma first and still have a diagnosis?
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