24 days. The amount of time Sonya has spent in the hospital during this admission. 4 Friday's, 4 Saturday's, 4 Sunday's, 4 Mondays (as of today), 3 Tuesdays, 3 Wednesday's, and 3 Thursday's. The amount of time our family has not been functioning as a unit. 3 weeks and 3 days. The most consecutive amount of time Sonya has ever spent in the hospital in her 15 months of life. More than likely, it will be the minimum amount of time it will take for me to get over this experience emotionally, physically, and spiritually.
When Sonya was first admitted I joked with the admitting physician about how we needed to be discharged by June 26 as we are planning to spend the summer in update New York. (By the way, her admitting physician has already made it through her rotation and is back with us). We knew this stay was not going to be short; however, I am fairly certain none of us expected it to be this long. We are two days away from June, and we have yet to hear the official word on when she will be discharged, although it could very well be just around the corner.
We cancelled this trip to New York last summer when Sonya was officially diagnosed with CDKL5, as we feared she would develop hypsarrhythmia while we were away and we did not want to deal with that type of stress while out of our comfort zone. I made Sam reserve the townhouse in January this year to make certain we would be unable to back out. I sent in camp checks prior to March 31 to ensure the kids had their spots in camp. Her epileptologist has given us her well wishes and blessings (I am pretty sure it's because she anticipates a month of silence from her inbox). I refuse to let CDKL5 stop us again.
We ARE going to New York this summer.
I am so looking forward to the complete family time, the evening BBQ's outside with family friends and the new friends I am anticipating us to make. I cannot wait for my brother to come and spend a weekend or two with us and for us to get to go to "Uncle's pool". I cannot wait to sit outside and hear nothing but crickets and upstate New York sounds. I am eager to see the evening skies lit up by lightning bugs that the kids will need jars to catch. I can already smell the fresh smell that only comes when the lake meets tall forest trees and the air-cools at night while you sit outside and bat away mosquitoes. I am calmed at the thought of the tranquility that awaits us. The type of serenity that is only found by being tucked away in a little community off the main road.
After these last 24 days and however more we have to go, this trip to New York will definitely bring us back to where we need to be as a family, as a unit, as a whole. It is definitely going to be a much-needed help for me as I transition back into being an active mom of four kids. It is really something how being in the hospital for an extended period can knock you off your game. We are going to have to relearn how to be a family again and I am so thankful it will be in such a beautiful location.
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