Wednesday, December 13, 2017
I don't even know how to start this post, but it is what it is.
Pandora was diagnosed with mild spastic hemiplegic cerebral palsy.
I woke this morning knowing I was taking my daughter to a neurologist. I woke this morning knowing I was bringing examples of her school work, a letter from her teacher, speech pathologist, occupational therapist, and developmental optometrist. I woke this morning knowing that my husband, my sister in law, and myself were truly the only ones who saw all of Pandora's struggles. I woke this morning not knowing that we would finally have an answer.
The neurologist was incredible. He read every letter, heard my every word, and assessed Pandora. While he examined her, he asked more questions, wrote down more information, and then gave the diagnosis.
I cried. The doctor asked why I was I crying and I said, "What is her future?" His answer - whatever she wants it to be.
She should not be progressing in school, but she is. She should not be able to ride a two wheel bike, but she does. She should not be an incredible swimmer, but she is a rock star in the pool. There are so many things she should not be able to do....
How did we miss this? Who can I blame? Who the fuck can I cuss out, fire, and beat the shit out of?
The short answer is we all did our job. Due to early intervention, the signs were not clear. Damned if you do, damned if you don't. As I begin to research more, the diagnosis makes perfect sense.
The neurologist took his time. The neurologist understood my tears and my fears. He reminded me the only reason Pandora is as amazing as she is is because of me and my perseverance. The only reason Pandora was even in his office was because of me. You would think this would make me feel better, but I was in no mood for the ego boost. (Shocking, I know)
I, of course, responded with a joke saying I was an overbearing Jewish mother and he quickly replied, "You're an educated professional who wanted answers. You got them. Don't let this label define you, your expectations, or limit Pandora. The sky's the limit."
I cried hysterically.
How do you balance pushing your kid to achieve more now knowing there is a reason she is not progressing like others? How do I punish her? How do I not coddle her? How do I look at her the same? How do I even begin to believe the sky is the limit when I am suffocating with fear of the unknown?
The answer to the how is the same answer it was yesterday. How do I do push her, expect more, etc?
I just do. I did it yesterday, I can do it today, and I will do it tomorrow.
It is not fair to no longer push Pandora. It is not fair to squash her hopes and dreams because she received a label this morning. Pandora's life did not change this morning. Mine did. I knew I was a mother of a child with special needs, but the thing was no one really believed me. All the label did was validate what I have been saying for years.
Next steps....Pandora will have an EEG and MRI to try and figure out why she has CP. If those are clear, she will undergo genetic testing. There is a reason for CP and we need to find it. Her diagnosis will not change. She will not get worse. There is no cure.
Speech therapy, occupational therapy, and physical therapy all help children with cerebral palsy. Like I said, Pandora's life has not changed. She will continue to receive these therapies. The biggest difference will be Pandora is now covered by by the special education umbrella for school meaning she will have an IEP vs a 504.
There is still so much for us to learn. There is still so much to process, but one thing is for certain - Nothing has ever stopped Pandora and we certainly will make sure nothing does.
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