It is with a humble heart that I tell you that today is BREAK THE RECORD DAY!!!!
We went to Cleveland Clinic 6 weeks ago, and as of TODAY Jake has gone over 6 weeks without a seizure-breaking our previous record which was 1 day short of 6 weeks. His medication is working! We are well on our way to the 52 weeks that he needs to get his learner's permit - which in his view as a nearly 16-year old, is probably the most important thing ever.
Cannot begin to express how very thankful I am. Honestly, I can tell you that this is not my best literary work because I am just to darn elated to worry much about how it sounds. The happiness feels like it is pouring out of my fingers and the grin on my face like a Roman Candle on the Fourth of July!!! Lord help the souls I see today, I am giddy as a schoolgirl and will be intolerably happy ALL DAY.
I am eternally thankful that the Lord has kept His promise when He said He had plans for us,plans to prosper and not to harm us. I am thankful that He still loved us when I lost it there in the hospital room and said some choice words to Him. Forgiveness is a powerful entity. I am soooo thankful to those who have prayed for us- complete strangers who lifted Jake up to Our Father in prayer, asking for healing. Thankful for the man, whose name I don't even know, who told his Rosary Group that he was praying for a total healing for Jake-his prayers are being answered. Thankful for those people who thought of us, sent us notes, gave us hope and something to believe in when it didn't seem like there was much to be thankful for.
I am thankful that He has seen fit to allow us to start back to a normal life again- a life without the fear that totally without warning, Jake will plummet to the floor and start seizing. We have lived with almost 2 years of unpredictable seizures, having the confidence that he can make it more than half an hour without us checking on him has been so liberating for everyone in my household. I cannot express the joy and hope that come along with seeing him thrive and actively work on getting his life back to a NORMAL teenager's life.
In celebration, we are headed to the Golden Corrall for dinner- for those of you NOT hosting teenaged boys in your house, it is an all you can eat buffett with tons of good food - and lots of desserts that I just don't keep here in the house- so Jake will be in Heaven.
It was that nagging voice in the back of my head, which is the Holy Spirit at work, which prompted me to take him to Cleveland, spending money we didn't have to get there. And as usual, the Holy Spirit provided understanding of the situation and a clarity that I didn't posess.
I am so extraordinarily blessed to have Jake as my son. His gentle spirit and willingness to help just astounds me. Sure he has normal teenaged moments, but overall, he is just a joy.
He has decided that he would like to go back to High school now, a big shift in plans as we have been preparing him to take his GED in a couple of months. He wants to play football- The Replacements, The Blind Side and about a dozen other football movies have occupied his attention of late- and at 6'3" 260# it seems like a great outlet for him.
However this whole epilepsy situation plays out long-term, I for one am thankful that for today, we are seizure free for 6 weeks! Thank you, Lord from that place in my heart that You know is true.
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Thursday, October 14, 2010
Sunday, October 10, 2010
I know the plans I have for you
It has been over a month now since I took Jake to Cleveland Clinic to evaluate his epilepsy. Surgery was denied, my heart was broken for him, and yet in the midst of that there is always hope.
Last Saturday, while watching Notre Dame play he looked over at me and said " I really miss playing football".
and my heart fluttered a little bit.
and I thought about what it would be like to re-enroll him in high school
and what a royal pain all that was for me
but how very much he loved it.
And the answer just came out of my mouth: well, if you want to go back and play, we could make that happen.
Jake is in the midst of his growth spurt- at his last visit with the neurologist two weeks ago he was 6'3" and 260#. He is a massive human being - perfect size, though, for a lineman or any other Paul Bunyan sized job you might need done.
Back in June, he was in the pool and had a seizure as he was coming out of the pool. Our friends, Nick and Jim Auby happened to be at pool right as it happened. Jake, being a substantial person who was now dead weight, needed to be pushed and pulled out of the water. Thank God that Jim and Nick were there to help Brady and I get him out of the water.
The beauty of this possibility is that if Jake were to go back to school and play ball, he would be an offensive lineman responsible for protecting Nick Auby, who will be the quarterback in the same age-group. Seems only fair, doesn't it.
So then there is the question of letting someone with epilepsy play football- I googled it- there are about a dozen pro players who have well controlled epilepsy- and tons more who play high school and college ball successfully.
We have had a month without a seizure- and he feels good - and he is sleeping well- and for right now, he has the potential to get a normal ( thought well medicated) life back. Makes sense that he would want one.
There is a passage in Jeremiah that I have thought of often during these days of uncertainty: I know the plans I have for you, plans to prosper you, and not to harm you, plans to give you a bountiful life and a future. Those words give me comfort - and in the -past couple of days as I am thinking about sending him back to school, I wonder if this was perhaps the plan all along. We shall see.
Last Saturday, while watching Notre Dame play he looked over at me and said " I really miss playing football".
and my heart fluttered a little bit.
and I thought about what it would be like to re-enroll him in high school
and what a royal pain all that was for me
but how very much he loved it.
And the answer just came out of my mouth: well, if you want to go back and play, we could make that happen.
Jake is in the midst of his growth spurt- at his last visit with the neurologist two weeks ago he was 6'3" and 260#. He is a massive human being - perfect size, though, for a lineman or any other Paul Bunyan sized job you might need done.
Back in June, he was in the pool and had a seizure as he was coming out of the pool. Our friends, Nick and Jim Auby happened to be at pool right as it happened. Jake, being a substantial person who was now dead weight, needed to be pushed and pulled out of the water. Thank God that Jim and Nick were there to help Brady and I get him out of the water.
The beauty of this possibility is that if Jake were to go back to school and play ball, he would be an offensive lineman responsible for protecting Nick Auby, who will be the quarterback in the same age-group. Seems only fair, doesn't it.
So then there is the question of letting someone with epilepsy play football- I googled it- there are about a dozen pro players who have well controlled epilepsy- and tons more who play high school and college ball successfully.
We have had a month without a seizure- and he feels good - and he is sleeping well- and for right now, he has the potential to get a normal ( thought well medicated) life back. Makes sense that he would want one.
There is a passage in Jeremiah that I have thought of often during these days of uncertainty: I know the plans I have for you, plans to prosper you, and not to harm you, plans to give you a bountiful life and a future. Those words give me comfort - and in the -past couple of days as I am thinking about sending him back to school, I wonder if this was perhaps the plan all along. We shall see.
Monday, August 30, 2010
Quiet
It is almost 11 and the room is dark. We saw doctors and nurse practitioners and assorted EEG and EKG techs as well as a slieu of nurses to start this journey - and frankly, I am tired.
Jake was so intrigued by the sheer number of people in and out of our room that he started trying to call them all by name - something I am woefully inadequate at doing - and when he couldn't remember the names, he would just wave. He had a blast and the staff is really taken with him.
We went down to breakfast at the Ronald McDonald house and amazingly, the one other family from Georgia happened to be down there. I talked to the mom for a long time and when I get back over there I'll add her to FB and we can correspond. We have had a lot of the same experiences with providers in the Atlanta area, and we are seeing the same docs here. Her daughter has epilepsy as well and just had the sutgery to eliminate her seizures. She told me to keep the room - and since I don't believe in coincidences and I was looking for an answer to that question, I took the advice and kept the room. It will give me solice for the next couple of days so that I can go and take a shower in peace. The house is only 5 minutes away on foot - and I really loved the gardens.
Jake is wrapped up in his red blanket - the one I bought for him when we moved back to Lafayette 11 years ago - he said it was a necessity and 10 minutes after I covered him up, he was breathing that soft rhythmic sound of peaceful sleep.
Tonight I am focusing on the gift of good friends. I have had so many notes, so many texts and phone calls with offers to help and to keep us in prayer. This is such a blessing and I want to just be grateful for those people who stepped up. What a gift they are to the soul.
Jake was so intrigued by the sheer number of people in and out of our room that he started trying to call them all by name - something I am woefully inadequate at doing - and when he couldn't remember the names, he would just wave. He had a blast and the staff is really taken with him.
We went down to breakfast at the Ronald McDonald house and amazingly, the one other family from Georgia happened to be down there. I talked to the mom for a long time and when I get back over there I'll add her to FB and we can correspond. We have had a lot of the same experiences with providers in the Atlanta area, and we are seeing the same docs here. Her daughter has epilepsy as well and just had the sutgery to eliminate her seizures. She told me to keep the room - and since I don't believe in coincidences and I was looking for an answer to that question, I took the advice and kept the room. It will give me solice for the next couple of days so that I can go and take a shower in peace. The house is only 5 minutes away on foot - and I really loved the gardens.
Jake is wrapped up in his red blanket - the one I bought for him when we moved back to Lafayette 11 years ago - he said it was a necessity and 10 minutes after I covered him up, he was breathing that soft rhythmic sound of peaceful sleep.
Tonight I am focusing on the gift of good friends. I have had so many notes, so many texts and phone calls with offers to help and to keep us in prayer. This is such a blessing and I want to just be grateful for those people who stepped up. What a gift they are to the soul.
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