Right now I am overwhelmed. I feel like I am moving through honey like every movement takes a 200 pounds of force to make it. Can you hear my voice in this post? If you could it would sound like a recording that is going too slow and my voice would have that deep hollow sound like they have in slow motion sequences in movies. That is me - moving through honey that is my life's minutia. Someone please tell me how to push the normal play button again. I have goals people! Things I would do if I had time. I have things I desperately need to accomplish for the health and wealth of my family and my own temporary self - vital things! But now all I am doing is moving through the slow viscosness of life. Trudging through snow and fighting through barrier after barrier. Nothing is a go it's all one big struggle. Ugh.
I won't do the list as I have done in the past - remember my call list here? Well this one is longer and time is ticking before we take our sweet warrior princess over seas. I am doing things differently this year because I don't want to end up in an Irish hospital again. An Irish hospital that would not release it's records on Ellie so that the travel insurance that we paid dearly for could not process the claim. The Irish hospital that in the ER could not get an IV in and saw no need for urgency. Not again. I have to admit I am feeling a bit edgy about this trip. I've no need to see the inside of any hospital ever, EVER again. These things are weighing heavily on my mind.
We are leaving for Ireland on Sunday and I haven't started packing and still have gifts to buy and Ellie has a cold and is running a low grade fever on and off. We have upped her seizure meds slightly after meeting with her new neuro. Long time we have waited for this meeting as I discussed here. He was ok. We were late because of the snow. He didn't have many answers. If I ever went into medicine I would never be a neurologist.
The other thing that is weighing on me is the question of how you thank, on a very limited budget, all the amazing people that make Ellie's life immeasurably better? Does a box of chocolates (even one from Ireland made from the milk of those limey soil calcium rich grass fed cows) really say thank you? Because I believe the precise more accurate thank you would be phrased like this,
"Thank you so much for making a wonderful life for us, especially for Ellie. My beautiful Ellie, who I thought there was no place for outside the home. For Ellie who is so bright but has some very particular needs that are very difficult and complex to understand never the less leverage for her growth and development. Ellie, whose head circumference as grown 3+ centimeters since she started your preschool and not from hydrocephalus. Ellie who now does not freak out at every loud sound and every new situation. Ellie who will look at any new book and who now loves to play the tambourine in a circle time that is sung at the top of everyones' lungs. The Ellie before could barely handle the whisper singing that you all so graciously offered up as a starting point. How can I say thank you for the fact that Ellie touched glue and put leaves on a paper place mat? How can I tell you that, that place mat is the most beautiful work of art and heart I have ever seen such that it made me weep to see it because I understood how it is pure evidence of how far she has come? How do you say thanks to people how stand by Ellie and have opened their hearts to build those vital relationships with her so that she will work hard for them? How do you say thank you to all these people that are fools for love enough to make monkey sounds and sing to her when singing is not their thing so that she can learn and grow and be happy in doing so?"
So you see, the small tokens I will get for these people, just don't really cut it in my mind. I wish I was a millionaire and could make up for the fact that I feel these masters of learning to be seriously underpaid. But for now the Irish calcium fed cow chocolates along with some other small gifts will have to do along with our HUGE undying gratitude!
So that is where we are at, one sticky ball of honey rolling down an icy hill towards D-day when we fly to Ireland for a lovely Christmas there hopefully seizure and hospital free.