Friday, June 27, 2008

Back to the Fields Part 2

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.”


“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.


A Stone Gatherer said...

Awesome story! And you are! God gave that little boy to you because he knew you were the best momma for him! What a tender heart he has!

Cheri said...

Oh Amy,

The things your family can do for the Lord!What an awesome child you have there. A heart of gold that's being molded by Christ through troubled times. How great is our God!

I can't wait to see what God has in store for your family...the lives you will touch added to the ones you already have-they are countless!

I will pray for you all-for the decisions about the brain surgery and that God's will be done with all of it!

Your family is a blessing to me.

Love, Cheri

Tanja said...

That is so beautiful. What a precious boy.

Wifeof1Momof4 said...

I am so glad God allowed our paths to cross.

God gave us our family ministry too and I AM thrilled! (Make a Wish)

Thank you Lord for Spencer's HEART of gold. Thank you that Amy is laying a good foundation for him and for her WHOLE family.

Unknown said...

I am praying for your son's complete and total healing in the name of Jesus.

You have a wonderful heart, Amy. Keep on looking up and moving forward!

Prayers and Blessings!

ocean mommy said...

You are a great mommy. :)

Praying that God will make it very clear what the best thing is for Spencer.

Peggy said...

Praying for you & Spencer, Amy!
Indeed, that is an awesome son you are raising! How deep his thoughts, and how wonderful a response! I pray not only that God continue to use him & your advocacy but that He lead and direct this BIG decision as you weigh everything...of course, that the GREAT Physician heal these seizures and get them under control! I'm glad the Ice Cream Shop stop delighted both of your hearts! May God keep y'all safe and under His Divine Provison, Protection and Abundance of Favors!
Looking forward to the Ice Cream scoop...(lol) Be blessed as you continue to be a blessing and advocate-healed by God's Grace!

Deborah said...

Thank you for the song. It is beautiful. I'm praying for you and your family.

Mocha with Linda said...

Wow. And it is no mistake that you are his mom. Can't wait to see what lies ahead for all of you. You bless us all!

Jennifer @ Conversion Diary said...

OK, I'm wiping tears out of my eyes. What a very, very special young man your son is.

Kyla said...

Your son is such a sweet kid, I can tell. I'm sorry you guys are dealing with such a burden.

Can I ask, how do they know he had a stroke at birth? My daughter has some brain lesions, and stroke is one of the possibilities listed on her MRI report, although they said it was highly unlikely.