Chapters 42 and 43 of Seizure Mama and Rose are inseparable in my mind. The ups and downs blur together as I remember how desperate we were to help Rose find the source of her seizures and how determined we were to get her to the prom. It was a double time crunch.
We entered the EMU with fear and hope. The seizures kept coming. Rose was getting injured by falling. She was pulled out of school because of them. We knew that surgery may be her only hope. The source of the seizures had to be found for this to be an option. The two SPECTS were necessary to get that information. One without the other was useless. A comparison of her brain between seizures and during a seizure was critical. The ictal SPECT needed occur while the trained staff was there to administer the dye and do the scan.
There have been many occasions of TEETER TOTTER since this one. Times when events take you up one minute and down the next. Hopeful times followed by defeated times. This was so stressful. We wanted those results so badly. Rose needed something to change.
Rose not having seizures at the right times (7AM -7PM weekdays) was disappointing to her medical team and her family. Her time was up and no answers were divulged. The only thing we could do to go to move forward was prepare to go to the Mayo later that summer.
In the meantime, there was a ball to get our Cinderella to. We all focused on that in the end. Everyone was determined to get Rose out of that hospital in time for her prom. Her hair must be done! Her corsage must be ordered!
How could she look so beautiful after such a disappointing and stressful time? That’s just Rose. Her resilience is shocking. She continues to amaze me. I am truly grateful for her strength.
I am thankful we had this happy event to distract us from the failure to get results we needed from the EMU.That is how life is parents. Especially with a fragile child. The ups are super high and the lows are crashing and painful.
I am still riding that Teeter Totter. I guess I always will be. Savor the ups. Hold on for the downs.
This is life you are doing here, not a dress rehearsal. Jump on!
Mama Flower Roberts
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