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| ....81/2 years have passed since his first brain surgery......A lot has changed in his life since that day. His struggles with Epilepsy have continued......... last night....heavy laughter was heard throughout the house, he had spent the evening visisting with a good friend.. ...but by 10:20 p.m., he had to call it a night, he could hardly keep his eyes open....... 11:30 p.m........... My son Steve knocked on my bedroom door, asking me, "how to spell mustache"...I asked, "Why"...he answered slowly, sluring his words as he spoke.....I said, "let me see what you are writting", I realized he was writting down how he was feeling... so he would be able to tell the Doctor about this one...He knew it was nothing he ever experienced before...yet, he did have the chest pain . ....He had wrote.......chest pain......... face burnning........ throat burning inside and out...feeling like I'm on a circus ride ...everything is spinning....even when I close my eyes.... I said, "Steve you need to go lay down..I think you are having seizure activity". I sat with him...his face still burning badly...I brught him a cold wash cloth, to see if it would help relieve the pain..."It did help a little," he said...but he was having a hard time breathing with the rag over his face..so, he set it aside ..I ask , "could he try to throw up"...thinking mabye he'd taken the wrong dosage again. He has taken double doses durning a state of memory loss or forgetfulness.......and it has made him very sick ... (he takes a total of ....3400 mg of seizure medcations to keep him at this point of control....keeping the grandmal seizures at bay ...well, less frequent)............Over the past year though new symptoms...and changes are occuring.. Severe chest pain , with or without any sign of seizure activity ....at times the slightest light can bring on sharp head and eye pain. ........He could not get sick....tears came running down his cheek, as his throat was burning intensly...water did not help......I checked his temp...it was normal 98.4......I asked if the chest pain was still there...."No its gone now, but my face and throat are burning...and every thing is spinning ." I asked , "did he want me to take him to the hospital ?"...he asked , "Why?", saying, they never can tell us anything because it usually goes away by the time we get there..I asked," If he could try to sleep?:....he said ,"He wanted to try"...and then said, "Mom, you need to get some sleep, if I need you and I can't get out of bed..I'll bang on the wall for you"....... I told him to wake me at anytime ...that I would take him into the Hospital if he felt he needed to go............... .............. 11:58 p.m. I stand outside his door and listen......When he's sleeping there's usually deep beathing that can be heard from outside his door....As he moved his arm from his forehead, I asked, " how are you doing?"... He said, "I'm doing better." My sons's Epilepsy continues to manifests itself in part with symptoms of serious medical problems...and the doctors here have done all they can .... so, shortly he will be making another trip to a hospital out of state to have his medication stopped...so that test and brain mapping can begain again.. ..........12:30 a.m. standing outside his door....he's asleep...the weight is lifted for awhile...He's not in pain...he's sleeping. This young man, My Son, has had to deal with more things in his short life time then most of us ever will., Yet he is not filled with self-pity or anger. He's Loving and caring and usually has a smile to share. He's responsible and has the deepest love for his children. He wants to be able to do all the things normal dads can do. He wants to find something that will help with his Epilepsy so he can provide for his children. He carrys the weight of his illness on his shoulders for the most part ....as he continues on this journey. He talks about death and dying from time to time..stating that he is not going to worry about his health so much...you only live once, he says and I am going to live while I'm living. When its my time, its my time...I don't fear dying, I know where I will go when I die. And I don't want to be kept alive by machines. Mom, I need your help to write up some papers, he said the other day...so the doctors and everyone knows my wishes before this next hospital stay. This spring he is selling his truck, his hopes to drive have faded.. "I'll get another truck, If I get a licenses," he says.. He's had a truck for 81/2 years, hoping for long enough seizure control.. to someday be able to drive. In Alaska , you have to be seizure free for 1 full year...and he will need a letter from a his Doctor verifing that. He didn't let his Epilepsy stop him from taking many of us on some wild journeys in his truck on back roads though. (well, I wouldn't really call them roads) :) He loves to go mud bogging and even enjoys getting stuck. He says," thats the fun part." 1:20 a.m. standing by his door...he's awake....He explains how the burning felt...he said ," it was like I was being held over a hot bunner...it burned as bad as a real burn...now, I only have a slight feeling all over my face. .........."WHAT IS HAPPENING TO MY SON"........I ask God ,while standing there,. I told my son good night...one more time...he called out...."I LOVE YOU, Mom" ......We are in this together for the long haul and we know it. And were making it moment by moment, minute by minute, hour by hour..day by day ...we will make it One Day At A Time. A NEW DAY 11:00 a.m. As I was working on the computer...Steve walked in. I asked, "how his body was feeling after last night".. He said, "he felt fine"...and added ..."I don't know what in the Hell was happening to me last night though. His Response made us both laugh...It isn't funny, but sometimes you gotta be able to laugh. My son has an amazing spirit . Throughout all he has gone through, he continues to believe that his God has a plan for his life. He say's at time's, "I don't know what the plan is, but he contiues to show me himself active in my life." And as I go through the days and look back on them I am strengthed as I see him with me all the way. |