Every end is a new beginning, right?

11 January 2018

I've heard that inspirational quote a time or two, hung onto it when times seem dark. It's great to be hopeful, to think bad things are behind you, and even though times look bad, it's somehow the start of something wonderful and new. Then again, sometimes, the new, exciting adventure life throws your way is just crappy. Sometimes, being all hopeful is difficult, and we get bitter. Lately, I swing wildly between the two.

In the fall, Little Miss had started senior year of high school, gotten her first job, the world was her oyster. Then, she started getting migraines, something she had always struggled with, but they grew more frequent. Then came vision blackouts at school, causing this mama to freak out hard core. To the doctor we went, my thought being that they could give her some sort of medication to control this, and life would get back on track. That's not exactly how it went. 

A MRI was ordered, we spent a great deal of time at an outpatient facility having that done, only to be sent to the emergency room. Our instructions were specific, go there, tell them we were sent to see a specific doctor. I knew then something was wrong, but had no clue what. Months later we were told by her neurosurgeon that the person who did that original MRI thought she had a large, inoperable brain tumor and that is why we were sent to the hospital. It was not a brain tumor and I thank God every day that the doctors at UMC took the time to figure that out. In talking to her team of physicians now, we quite easily could have been told that was just it and they would have insisted on biopsy. Instead, a team of doctors from across the country consulted on her images, for hours. I'm not sure I've ever been so nervous in my life. 

The verdict was, Parry-Romberg Syndrome. The doctor in the ER who came to report this news to us admitted he'd never heard of it. He said it was rare, like finding a dinosaur walking around in modern day. That was pretty much it, we would get referrals from her PCP on specialists to see, but were give no information about this diagnosis itself. We Googled, which was not such a great idea. We cried. When we were finally released from the hospital, we were in shock I think, going home to face the scary unknown. 

So this new beginning, the new chapter in Little Miss' life, has not been the easiest. There are so many doctors, progressing symptoms, changes having to be made to plans she's had about life after graduation. She handles it so beautifully, with grace I wish I had. Some days for her are rough, but she seriously inspires me. You can read more of her story here. Yes, it's a fundraiser link, no I'm not asking for money from you. It's simply that I've kept it updated through pretty much the beginning, and is has more detail than my tired mind can muster at the moment. 

I know it could be so much worse, and am so thankful it's not. It could be more severe, more progressed, and it's not. Believe me, I know we have it so much better than so many other families. Some days, like today, it's just harder to handle than others. When there's a bad seizure day, or a bad pain day, or an emotional day for her... It's just hard that Mom can't fix it. I can't change it. It sucks. Now, I'll quit being whiny and rambling, ask you to keep us in your prayers, and remind us all to love on those you hold dear extra hard from time to time. 

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