A few days

>> Sunday, December 2, 2012

A few remarkable and craptastic days. Let's recap shall we?

First: Friday. We headed to Ogden after school to celebrate Lil Miss' 1st birthday and Papa and Nana's 49th wedding anniversary. It was a hoot. He had a few minor seizures, including one at the Olive Garden as I was ordering his food, but nothing too big. Kind of lethargic all evening and fell asleep on me immediately following a few bites of food.

Next: Saturday morning I took Daddy to the airport to fly across the pond. While I was gone, Papa saw a T/C that lasted about a minute. Damn.

Several more smaller ones throughout the day. And then that evening...

Papa is a member of a model train club. One of the largest and most active ones in the Country and we LOVE the things they do. Every year, they have a Christmas Party. They buy all the children toys (the members fill out cards about ages, gender, etc...) and Santa Visits. It doubles as their membership meeting. They do it right.

We have been attending for 6 years now and until last night, Bug had sat on Santa's lap ONCE. Glenn took him, he didn't care, he only wanted off. But last night, Bug had a seizure as Santa was entering. It wasn't too substantial, but I thought it might have been big enough that he would sleep. He was looking sleepy, but he just sat there.

A few minutes into it, Taylor went over with her cards to talk to Santa and to get a present for herself and for Ava. Ava, wanted NOTHING to do with the Jolly Old Elf and Papa ended up holding her because I was busy with Bug.

I go it in my head that I would at least take him over to watch the kids. How can he learn to be a consumerist if we never let him embrace it? :) Actually, I had been crying and I needed to feel that he was a part of something that almost every other child on the planet cared a great deal about. So, I wheeled him over (he was in his new ride) and we sat there watching, holding hands, with me choking back the tears.

And then something wonderful happened. He stood up, took me by the hand, walked in circles and then headed toward Santa. It took us a few minutes to get through all the children and their parents but when we got there, I sat down and Bug sat on my lap. We waited our turn. When it was just Bug and another little girl, her Mother told us to go first. I said: Are you sure? He may take awhile. She smiled. I'm sure, she said. She had been watching him.

I stood him up and steadied him while he walked to Santa. He climbed on his lap, with a little help from Santa, and buried his head in his chest, grabbed onto his coat and then looked him in the eye.

Let me say that again: He LOOKED HIM IN THE EYES. I was standing less than 12 inches away and he paid no attention to me. I explained that Bug would not tell him what he wanted for Christmas because he is non verbal and has a severe Epilepsy, but anything that spins would be awesome. Santa looked at me an smiled and said: What a beautiful and very special little boy. He did this with the look of a loving Grandpa. I have always enjoyed this man, he is amazing, but this, sealed the deal: He is the real Santa to me. He was kind and he held Bug gently and talked to him with sweet words and reassured him. And he saw I was almost crying as did the lovely lady that had purchased and was handing out the presents. She asked about him and I found out that she is a Special Needs Bus Driver in Davis County who used to drive for Dan Peterson School.

We took the present, said thank you and Merry Christmas about 4 times, all the while with Santa reassuring that it would all be OK, and then we went back to the table to open his present. And Bug almost opened the present! He pulled at the paper twice and then was done. This is what he has been doing off and on for a week...he's there and then...he isn't. It's scary and concerning and I hate it. But when he saw that toy...he perked up and was all smiles and happy the rest of the night. It was a good evening with no more seizures.

Today was something else. 4 seizures, two fairly large. Then, I found out he was constipated. Hopefully, he is feeling a bit better but he didn't look like it when he went to sleep. The last two nights, he has been having a seizure around 4 am. I was sleeping by him at Papa and Nana's or I would not have known. At least they don't wake him up. He seizes and then goes right back to sleep. Let's hope he doesn't have any, but if he does, let's hope he sleeps through it.

I can not detail the kind of frustrated and helpless I feel at the moment. I feel like I am watching him get worse and worse and I am just waiting. So, tomorrow, I will call Dr. Quadros and ask him what to do and see if I can find another Doctor that will NOT put us off for 5 months once I tell him that the medication is making him worse. Utah has me feeling like I am almost alone in this battle. But, I will change that.


ldyvixenne December 2, 2012 at 10:45 PM  

you certainly aren't alone...at least not from the parent's side of things but you definitely brought me to tears. Mikey is almost afraid of Santa but this year was better thanks to his wheelchair...he didn't have to sit on his lap so I guess that made it better. I would LOVE to know more about this model train club though because he is a train FANATIC

Nett December 2, 2012 at 10:59 PM  

Katrena! They are doing several things this Holiday Season including a set up in the Newgate Mall! Also, they have their annual Train Show at Union Station in March. Dad has been with them for 15 years and runs some of the modules so I am SURE he can get Mikey in close and personal. :) Here's their website: http://www.hostlers.info/

Holly Elizabeth December 2, 2012 at 11:02 PM  

Darlin, as I read this I was moved to tears of joy as you wrote of Santa.

I wish that doctors weren't so stinkin' stubborn and would take some time to just shut up and listen.

I know there isn't a ton that I can do for you, but just know that I am here for you, Bug, and your family.

Love you, Nett!


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