We spent the entire day in the hospital on Tuesday. I know it is hard to believe you could be in an emergency room one moment and go get ice cream the next, but that is truly what living with epilepsy is like.
You can have a serious, status seizure that can be life threatening but once the seizure is over and the after effects or post ictal state is gone, you go on with life as usual. It’s kind of weird.
The neurologist has always told us to let Spencer do whatever he felt like he could do as soon as possible after a seizure. We don’t want him to live his life with the attitude of a victim. Having epilepsy or a seizure shouldn’t keep him from doing anything that anyone else does (for the most part). It shouldn’t keep him from doing what he wants to do.
That is one of the reasons I allowed him to travel to Tennessee after his last status seizure. After we left the emergency room on Tuesday, he wanted ice cream. So we went to Scoops, a new ice cream place that recently opened near our home. It is truly what Heaven must be like, but that is a post for another day.
I have to side track for a moment and tell you some information we received from the neurologist on Monday at our appointment. We were told that statistically if you failed to gain seizure control on more than three medications, it usually means you need to begin to explore other options to try to control your epilepsy… i.e. brain surgery.
There is a good chance if the part of Spencer’s brain that was damaged at birth from his stroke (which is where they are pretty sure his seizures originate from) could be removed, he could possibly achieve seizure freedom, a big “if” with a lot of possible side effects from the surgery.
We have never considered brain surgery because we didn’t feel Spencer’s seizures were out of control or disruptive to our lives. However, if the current seizures he is having could possibly cause further brain damage, then perhaps we need to consider surgery as an option, a lot of information to digest.
So back to our trip to the ice cream store. We were in the car discussing the seizure. This is when he confirmed he had been looking for me and couldn’t call out to me. He didn’t realize I was at the computer and went upstairs looking for me.
He is pretty passionate and emotional anyway, but even more so after a seizure. He said he wished he could just remove the seizure part of his brain and stomp on it. I ached with him and felt his frustration.
Seeing an opportunity to explore how he might feel about surgery I threw out the information we had received on Monday. I’d like to share our conversation with you.
“Spencer, did you know there is a surgery available that could remove the seizure part of your brain. You could actually have that part taken out.”
“Really?”
“Yes. They would take the part of your brain that was injured when you had your stroke at birth out and it might possibly stop you from having seizures.”
“Would it hurt?”
“No, the actual surgery wouldn’t hurt because you would be put to sleep, but it would probably be a long recovery and you would be in the hospital for some time. You know two of our friends (not named here) who are Epilepsy Advocates had brain surgery and they don’t have seizures anymore.”
He sat in thought staring out the window for quite some time. I knew the wheels were turning in that complicated little brain of his. Then he said this:
“Mom, if I had surgery and didn’t have seizures anymore, could I still talk to people who had epilepsy to help them, so they wouldn’t feel so alone?”
Words cannot express to you how this mama’s heart could be so proud and hurt so much at the same time. The realization that my child would even consider continuing to have seizures rather than be prevented from helping someone else going through the same thing was almost too much for me. Especially after the confirmation I felt I received this past weekend at She Speaks. I really feel called to a ministry that involves my entire family helping others learn how to “seize every opportunity.” To learn how they can take the obstacles and bad things that happen in their lives and use them for good.
God truly has something special planned for this young man and I don’t just say that because he is my child. I just hope I am a good enough mama to prepare him for what is in store.
Friday, June 27, 2008
Wednesday, June 25, 2008
Back to the Fields
“Spencer,” I called to my son to see if he would answer. It is a ritual at my house. About every 10 minutes I call out and he answers. Usually he replies “Yeah.” I always reply “just checking.” I know if he answers, everything is OK.
“Spencer,” I called again. No answer. Panic rose in my throat. Sometimes when he doesn’t answer, it is because he is too engrossed in whatever TV program he is watching or whatever book he is reading. Maybe that’s why he isn’t answering, I thought.
When I checked on him earlier, he was sitting in a chair in the living room watching TV, but now he wasn’t there. I was working on the computer, not completely aware of how much time had actually passed. The office in our home is located near the front door, so I knew he couldn’t have passed by to go outside without my noticing. I knew if he wasn’t outside and he wasn’t answering, something was wrong. I was afraid to walk over beyond the couch to my blind spot for fear I would find him lying there.
“Spencer,” I called a third time, a little louder with more fear and urgency in my voice. I heard stumbling around upstairs. I made my way to the bottom of the stairs and saw him standing at the top. He was trying to speak but was unable to make any noise come out.
He started to take a step towards me and I rushed up the stairs, unsure of how my feet were moving so fast. I caught him just as he began to stumble, which would have surely led to a fall. A surge of adrenaline helped me to carry him to the bottom of the stairs where I laid him on the floor.
He was seizing. The right side of his face and right arm were jerking. He could not respond when I talked to him. I knew he had probably somehow made it up the stairs looking for me since he could not call out for help, a fact he later confirmed. Mary Lyndsey quickly said, “I can help Mommy. I’ll get a pillow and a cloth.” And she raced off. She’s been through this many times and is old enough now to respond by offering help.
I wasn’t sure how long he had been seizing prior to me finding him, so I grabbed my phone and started the timer. At the four and a half minute mark, I grabbed the rescue medication and prepared to use it.
I began to pray out loud. I’m sure you’ve heard the saying a picture is worth a thousand words. Well, a thousand words went through my mind in the time it would take to snap a picture. Those few minutes seemed like an eternity. I wondered, should I use this rescue medication? Is my faith not strong enough? Will the seizure stop? Surely God would not allow anything to happen to hurt my child in a test of my faith? Then I remembered Abraham and Isaac. I was so confused. Then the incontinence happened. I cleaned up as best I could and administered the medication.
Normally a seizure will stop within a couple of minutes after giving the medication. As the timer kept running approaching 12 minutes, his breathing became a little labored. The seizure was not stopping. I picked up the phone and called emergency services for the second time in about a week. We just experienced a 17 minute seizure not many days ago.
Finally the seizure stopped. Normally he is responsive for at least a few moments before the medication takes full effect and he goes to sleep. This time he was not.
As EMS arrived, my neighbor came over and offered to take Mary Lyndsey. I climbed into the back of the ambulance with my son and headed to the hospital. He finally began to try to talk, but his speech was so slurred the emergency worker asked if he was deaf.
We arrived at the hospital where we spent the entire day waiting for the medication to wear off so we could make sure everything was OK. He’s fine now, just very tired from the seizure, the rescue medication, and an increase in dosage of his regular meds.
What a welcome home from She Speaks. I have often heard it said that our enemy comes at us the hardest when we finally figure out what God is calling us to do. And usually he strikes at our greatest point of weakness.
I must tell you this past weekend at the conference was huge for me. I experienced a fresh word from God, a clear direction. A path I feel includes not only me, but my son. Clearly, we are under attack.
At the conference this past weekend, Lysa shared from stage about how after David was anointed as King by Samuel, he didn't immediately go to the throne. He first had to go back to the fields to prepare for what God was calling him to do. Carol posted today on what Lysa shared from stage. I can't help but feel like God is preparing us.
Last year, 3 days after returning from She Speaks, Spencer had a 4 hour status seizure. We were airlifted from one hospital to another and spent 4 days in the Intensive Care Unit. I lost focus and became distracted.
This year, I am resolved to move forward, even more so after a conversation with Spencer on the way home from the hospital. A conversation I will share tomorrow.
Please continue to be in prayer for Spencer and for our entire family. And thanks to those of you who have already emailed me and prayed.
Blessings to you,
Amy
“Spencer,” I called again. No answer. Panic rose in my throat. Sometimes when he doesn’t answer, it is because he is too engrossed in whatever TV program he is watching or whatever book he is reading. Maybe that’s why he isn’t answering, I thought.
When I checked on him earlier, he was sitting in a chair in the living room watching TV, but now he wasn’t there. I was working on the computer, not completely aware of how much time had actually passed. The office in our home is located near the front door, so I knew he couldn’t have passed by to go outside without my noticing. I knew if he wasn’t outside and he wasn’t answering, something was wrong. I was afraid to walk over beyond the couch to my blind spot for fear I would find him lying there.
“Spencer,” I called a third time, a little louder with more fear and urgency in my voice. I heard stumbling around upstairs. I made my way to the bottom of the stairs and saw him standing at the top. He was trying to speak but was unable to make any noise come out.
He started to take a step towards me and I rushed up the stairs, unsure of how my feet were moving so fast. I caught him just as he began to stumble, which would have surely led to a fall. A surge of adrenaline helped me to carry him to the bottom of the stairs where I laid him on the floor.
He was seizing. The right side of his face and right arm were jerking. He could not respond when I talked to him. I knew he had probably somehow made it up the stairs looking for me since he could not call out for help, a fact he later confirmed. Mary Lyndsey quickly said, “I can help Mommy. I’ll get a pillow and a cloth.” And she raced off. She’s been through this many times and is old enough now to respond by offering help.
I wasn’t sure how long he had been seizing prior to me finding him, so I grabbed my phone and started the timer. At the four and a half minute mark, I grabbed the rescue medication and prepared to use it.
I began to pray out loud. I’m sure you’ve heard the saying a picture is worth a thousand words. Well, a thousand words went through my mind in the time it would take to snap a picture. Those few minutes seemed like an eternity. I wondered, should I use this rescue medication? Is my faith not strong enough? Will the seizure stop? Surely God would not allow anything to happen to hurt my child in a test of my faith? Then I remembered Abraham and Isaac. I was so confused. Then the incontinence happened. I cleaned up as best I could and administered the medication.
Normally a seizure will stop within a couple of minutes after giving the medication. As the timer kept running approaching 12 minutes, his breathing became a little labored. The seizure was not stopping. I picked up the phone and called emergency services for the second time in about a week. We just experienced a 17 minute seizure not many days ago.
Finally the seizure stopped. Normally he is responsive for at least a few moments before the medication takes full effect and he goes to sleep. This time he was not.
As EMS arrived, my neighbor came over and offered to take Mary Lyndsey. I climbed into the back of the ambulance with my son and headed to the hospital. He finally began to try to talk, but his speech was so slurred the emergency worker asked if he was deaf.
We arrived at the hospital where we spent the entire day waiting for the medication to wear off so we could make sure everything was OK. He’s fine now, just very tired from the seizure, the rescue medication, and an increase in dosage of his regular meds.
What a welcome home from She Speaks. I have often heard it said that our enemy comes at us the hardest when we finally figure out what God is calling us to do. And usually he strikes at our greatest point of weakness.
I must tell you this past weekend at the conference was huge for me. I experienced a fresh word from God, a clear direction. A path I feel includes not only me, but my son. Clearly, we are under attack.
At the conference this past weekend, Lysa shared from stage about how after David was anointed as King by Samuel, he didn't immediately go to the throne. He first had to go back to the fields to prepare for what God was calling him to do. Carol posted today on what Lysa shared from stage. I can't help but feel like God is preparing us.
Last year, 3 days after returning from She Speaks, Spencer had a 4 hour status seizure. We were airlifted from one hospital to another and spent 4 days in the Intensive Care Unit. I lost focus and became distracted.
This year, I am resolved to move forward, even more so after a conversation with Spencer on the way home from the hospital. A conversation I will share tomorrow.
Please continue to be in prayer for Spencer and for our entire family. And thanks to those of you who have already emailed me and prayed.
Blessings to you,
Amy
Monday, June 23, 2008
He Speaks, She Listens
Here are a few pictures from this past weekend.
This was my speaker evaluation group. They are from left to right on back row: Kristy Buescher, Kara Akins, Leslie Bond, Karen Ehman, Erin Bunting, Nicole Greer, Marla Taviano, Me Front Row: Dianne Applewhite, Michelle Weber, Amy Brooke, and Susan Belisle.
Me and Lysa
Me and Missy (It's Almost Naptime)
Me and Karen
Me, Marybeth (Cheaper by the Half Dozen) and Carol
Me and Joanne (Blessed)
Kelley (Aroma of Joy), Me, Carol (Sheep to the Right), Missy (It's Almost Naptime), Linda (2nd Cup of Coffee)What an incredible weekend! The She Speaks Conference was fabulous. I had such a good time and learned so much. The conference sessions I attended were full of information. The women I met, especially my blogging buddies, were so filled with Jesus they were sloshing him out everywhere. I was especially moved by Renee Swope's session on Saturday night. It was as if God was speaking directly to me through her.
My speaker evaluation group was awesome too. What a gifted group of women. I know they will all use their speaking and writing ministries to further the Kingdom. And thanks to Karen Ehman for facilitating our group. If you think about it lift up a prayer for her this weekend as she has closed on her house and is moving.
I have to say that I have been struggling with some things for quite some time but I heard God loud and clear this weekend. As Carol said, He was definitely speaking and I was finally listening. Please pray for me to stay resolved to doing what I clearly heard God tell me this weekend.
I had so much fun meeting so many of my blogging friends in person too. The conference was so busy though I didn't have as much time to spend with many of them as I would have liked. And, I kept forgetting my camera so I didn't get pictures with everyone... so if you have a picture of us please email me... I would love to have it.
Thanks to everyone who participated in TSMS this weekend too. I haven't had an opportunity yet to read all of your post, but plan to.
I hope you all have a blessed week!
Amy
Saturday, June 21, 2008
To the Right, To the Left
Oh ladies... I have to tell you that being at She Speaks this weekend has given a whole new meaning to "I wish you were here." I really do wish you were here to experience how awesome God is and how powerfully He is moving in the lives of so many women.
I don't have much time to post as it is currently 1:30AM and I have to get some sleep for tomorrow but just let me share one verse with you.
Isaiah 30:21 says Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it."
God will always be right beside us telling us what step to take next.
This week's song is a fun little reminder of this. Instead of Mr.C... just listen to Mr. G.
Wednesday, June 18, 2008
Midweek Motivation
Come join me here today for Midweek Motivation.
And please be in prayer for all the ladies (including me) that will be attending She Speaks this weekend! Carol and Iare leaving tomorrow, so pray for our husbands and kids too!
Blessings to you,
Amy
Sunday, June 15, 2008
Daddy Land
Dear Faithful Bloggy Friends,
Sorry I haven't posted much this week nor been able to read all of your TSMS post from yesterday. This week has been especially busy with Vacation Bible Camp and Epilepsy Advocate Trips tacked on both weekends. Spencer and I are off today to another event in TN to speak at an Epilepsy Camp. Please pray for safe travels and for a seizure free trip.
We actually had a pretty significant seizure last night lasting 17 minutes and requiring Diastat and a call to 911. (Which is why I haven't had a chance to read TSMS). Spencer bounces back pretty quickly and still wants to make the trip, so we are heading out today until Wednesday.
Mary Lyndsey had her first dance recital yesterday and she was just darling. I promise to post pictures when I return. In the meantime, I'd like to share a post I wrote a while back but never published. It's in honor of Father's Day also. It was written the week we went to Chicago for the press conference about receiving the seizure dog.
Saturday morning, my wonderful husband let me sleep in. We were all pretty exhausted after such a long, busy week. A quick trip to Chicago right in the middle made it especially crazy. The kids however, still managed to wake up by 6:30am. They don't normally even get up that early during the week... so why I ask you, on Saturday morning, when it was raining and still dark and overcast outside, would they decide to wake up this early? I have no idea. It was perfect sleeping weather.
They both were up and at em' early. Greg got up with them and let me stay in bed. When I finally woke up around 10am, he came into our bedroom and we just laid in bed talking. This is a magnet for our kids. As soon as they figured out where we were... they came running. They both hopped in and we proceeded to make a tent out of the sheets. We all got under the "tent" and snuggled and laughed and talked about our week.
After playing for awhile, Greg and I wanted to finish our conversation, so we sent the kids out of our room to read or watch TV. It was then that Greg did something that amazed me. He proclaimed our bedroom "Daddy Land." His conversation with the kids went something like this:
"Hear ye, Hear ye... this room has now been proclaimed Daddy Land. All children should vacate immediately or they will suffer the consequences. You must vacate the room by the time I reach 0. 10, 9, 8, 7... " This was of course delivered in a loud, thunderous voice with just a hint of play in it.
You have never seen two kids scramble so fast in your life. They were both out of the bed and the room by the time he reached 6. I couldn't believe it. When I tell them to do something... let's just say they don't move that fast. It usually requires several requests, lots of whining, and my voice being raised (without any play in it) before I get any action. Do all kids react this differently to moms than they do to dads?
Anyway, I asked Greg about it and he said this is something they do when I am not here and he is keeping the kids. If he needs peace and quiet to have a phone conversation or get something completed... he just proclaims "Daddy Land" and sends them to another room until he is finished. And they comply. Unbelievable.
OK... here is the cutest part that I really wanted to share with you. After they left the room, Mary Lyndsey was the first to come back. She came into the room holding a bowl from her tea set full of money. Pennies, nickles, dimes and quarters were overflowing. She came to the side of the bed and in her sweetest voice said... "Daddy, can I pay you to enter 'Daddy Land'? I have lots of money... I promise I will clean my room today... how about a kiss. What if I give you a kiss... will that get me into 'Daddy Land'?"
Greg, always being a kidder, told her he would take the money and the kiss. She quickly placed the money on the bedside table, kissed her daddy on the cheek and ran from the room to get her brother. I could hear her calling to him "Spencer, quick get your money. You need to pay Daddy and give him a kiss then you can get into 'Daddy Land'. Hurry."
Of course we were both rolling laughing by now. Spencer went to his baseball bank, retrieved some money and came trailing back into the room behind his sister. Greg took their money (just temporarily of course) and they climbed back into the bed under the "tent" where we once again began to play, giggle and receive lots of kisses.
As we were snuggling and talking, I began to think how much we are like Mary Lyndsey at times. We want to be near our heavenly Father. We want to be in His kingdom - "Daddy Land."
Some think we can buy our way in, so we pay tithes or give to the poor. Some think we can earn favor by deeds... so we work really hard in lots of service areas. Some think just saying we love God and sending some affection His way will take care of everything.
While these things worked for Mary Lyndsey and Spencer to gain admission into "Daddy Land" at our house, they don't work with God. The only way to gain admission to His Kingdom is to believe on the name of His son Jesus Christ, that He died for our sins and was raised to life on the third day."
John 3:16 "For God so loved the world, that He gave His only Son, that whoever believes in Him should not perish, but have everlasting life."
When we believe, the tables are turned. We are freely welcomed into "Daddy Land" We are the ones who receive riches untold (much more than a tea set bowl full of money). We are taken care of and God is thrilled to do so many things for us. And we receive more love than we could ever imagine.
Subscribe to:
Posts (Atom)
