Saturday, September 27, 2008

A New Mission

As you all know, this blog has been about celebrating Ben's life. But I feel that God is calling me to spread the word about how Ben died. Hopefully by telling his story, this can become a place for others to come for information about SUDEP, to find support as families cope with their loss, and to help raise funds for research in preventing SUDEP.

Ben was our 3rd child of 5 and our first son. He was the fussiest baby I had ever seen! But as he approached his first birthday, he became the child I will always remember. His love for life and others began to blossom. The tears were replaced with laughter and there was a mischievous twinkle in his eye.

Ben had his first seizure following a fever when he was 14 months old. I was holding him as I went to get the thermometer. All of a sudden, his little body stiffened and his eyes rolled back and he had a grand mal seizure in my arms. We rushed to the hospital where we were told this was a common thing in children with fevers and not to worry. But a week later, he was hospitalized with uncontrolled seizures. They ran many tests and put him on medication. After a year, he had had no seizures so the doctors decided to wean him off medication. For 9 months, he was seizure free and we all thought that he was fine. We celebrated Thanksgiving with my family and while there, he started having seizures again. Each one became longer and more severe and by the time we got him to the hospital, they were happening about every 30 minutes. Amid all the doctors coming in and asking questions, the doctor that stands out in my mind is the one who stood quietly by, and when it was only he and another doctor in the room, he walked over to Ben. Ben had been unconscious this whole time from medication. The doctor put his hand lightly on Ben's forehead and looked at him with such kind eyes. Then he looked at me and said "You are truly blessed to have this child."

Ben was diagnosed with epilepsy at age 3. His seizure activity was almost completely controlled by medication, and the few seizures he did have always happened when he was ill. The doctors had even told us that he would probably grow out of this and were considering stopping his medication. On Saturday August 11, 2007, Ben woke up early. He and his 7 month old brother sat quietly in my room playing together. I remember just watching them play, imagining all the fun these two brothers would enjoy together. As the other children woke up, I got busy with the morning routine. Around 9:00 Ben came to me and said he had a headache. The other children had all had colds recently, so I figured he was next. I gave him some medicine for his headache and he asked if he could lie down. After Ben went to bed, the piano tuner showed up to fix the piano. When he left I went to check on Ben. I called out his name as I walked up the stairs, but he did not reply. I had this horrible feeling overcome me and I quickened my steps. As I entered his room, I screamed. My little boy was dead.

No one ever told us you could die from epilepsy.

We now know that Ben died from SUDEP. Sudden Unexpected Death in Epileptic Patients. Right after Ben died, I tried looking up SUDEP. There is very little to be found on the internet or elsewhere. Even our neurologist could not tell us any more than we had already found on our own.

This has completely changed our family and we will never be that family again. There is a huge hole in my heart and in our family. I was amazed by how many lives Ben had touched in his 7 years. As we try and move forward, I still want him to be a part of how we live. Hopefully Ben will smile down on us as we try to reach out and offer a helping hand.


Alice Gunther said...

Praying for you and your family. What a beautiful little boy and unspeakable loss.

My grandmother was an epileptic--thank you for sharing your experience so selflessly here. I know you will help many.

B-Mama said...

I am an absolute mess after reading about your beautiful Ben and feeling a minute portion of your loss as a mother and family. God bless you all in this time of mourning, missing, and loving all the more.

My husband was also military and deployed for a year before we had children. I cannot imagine your husband's angst upon hearing such news and being so far away (nor your panic having such a traumatic event happen while he was gone). God bless you both and wrap His mighty arms around you.
We will pray for you. Please take care.

Cate Bush said...

Jenny, I feel speechless after reading your story. I'm so sorry about Ben - I know he will always be with you and your family in so many ways. It sounds like he brought so much humor and light heartedness to you (I'm thinking about the ant story now). I'm sending you love and support.


Trina said...

Your son had the most amazing eyes -- a truly beautiful boy. My heart hurts for your loss.

I have a 15 year old daughter who has a brain injury. She was hurt in a car accident when she was four. She started having seizures this past May. A long time ago her neurologists told us that it's likely she would have seizures once puberty hit. We were hoping that would never happen, but it is :(

Thank you for sharing Ben's story. Again, I'm so sorry for your loss.

Mellanie C. said...

Hey, Jenny,

We've been to visit Ben twice now. The first time we went, I had dropped Evan off at a friend's house, then picked Hillary up. We were driving by the cemetery, so I decided to go in and visit. Naturally I went to the wrong side of the wall first, and had to go around. I said a prayer, shed a few tears, then got back in the car.

As I was backing up to turn around, I heard this crunch. I was horrified, thinking I had backed into a tombstone, but it was a little tree that had somehow been right in my blind spot when I looked behind me before I turned. Hillary and I laughed in relief, and we both agreed Ben would have appreciated the drama of the moment.

Later that evening, I was telling Sarah and Sheila about it as we held choir practice. I got up for some reason or other, and Sarah looked out the window and realized that the corner of my back bumper was smashed in. William went outside with a rubber mallet and banged the bumper back out, but there's a huge black scrape on it, and I think of Ben every time I see it.

I also wanted you to know that I went out and visited Ben for a moment on All Souls Day. It seemed appropriate. I really miss him and all of you.

Muchas smooches,

Just me-Jerri said...

Jenny-never would I expect to have to ask you more about this. I knew our paths crossed for a reason. Zoe had her third seizure yesterday and has been diagnosed with seizure disorder...they will be doing further testing to see if it is epilepsy. Her first two seizures were around the same age as Ben and were from a fever. This one yesterday came out of the blue and (she is still 3). Need some advice girl. Feel so helpless and concerned.

Xenia said...

Jenny, your Ben is so beautiful and I'm very sad that he has departed this life. I have at least partial understanding of your sorrow, because my beloved daughter has also departed ~ though in quite different circumstances.

May our dear Saviour shelter and protect and bring consolation as only He is able. My thoughts and prayers will be with you.

(I found my way here from Jennifer @ Conversion Diary.)

Heather of the EO said...

Congratulations on your new mission. You're a courageous mother, sharing your story with such honesty.

I'm so sorry for your loss. There are no words for this grief. I'm just so sorry.

You mission will be part of God's grace for other families and that's a beautiful thing. I'm sure it will bless you too.

Abigail said...

Your family will be in my prayers this week. Thank you for sharing your story.

Karen E. said...

Jenny, may God bless and love and hold and comfort you.

Shawnda said...

Hi Jenny, thanks for sharing. I just read your post on another blog - not waisting the minutes. I'm a little alarmed by what I read. My son has epilepsy, and I've never heard of this. I just read a little on it. And that made me even more alarmed. Our son has been seizure free since he started his meds 1 1/2 yrs ago, praise God! He is 5 yrs old. We are praying to start the weaning process from his meds around his 2 yr mark, Lord willing he stays seizure free. I would appreciate any information you can give me. Though I've read some of the risk factors, I want to know more. He's young, on one med - Trileptol, male gender, and he's African American.

I really can't imagine your loss, Jenny. My heart aches with your family tonight.

Thank you so much for sharing!!!

Katie said...

Oh, bless your aching mother's heart. I am so sorry for the tragic loss of your sweet boy.

My thoughts are with you in this unfortunate journey we both follow.

Joy said...

Jenny, thanks for visiting my blog. Your son Ben is a beautiful boy. We don't know why our daughter died when she did, but we think it very well could have been SUDEP.

Aubrey said...

You are very brave to tell this story. My heart aches for you! It is my hope that God gives you the grace to get through each day that you are without Ben. +

m said...

Your story really hit home for me, my son Jonathan has severe autism and occasionally suffers from drop seizure activity. Until the Doctors could figure it all out, my wife and I were taught how to use a difilberator because our son had silently slipped into a near death state on three occasions while we were stationed at Fort Benning, Georgia. Finally after several visits to St. Francis and the idiot Doctors at Doctors hospital we were able to find the cause of these seizures; turns out, they were caused by abusive treatment of our son by the teachers at American High School in north Columbus who were inept at properly teaching Autistic children. The classroom environment was causing our son, who is unable to talk, to instead suffer from extreme agitation resulting in seizures, which are now controlled by three daily doses of Depakote.

tomgreen3 said...

Iam sorry to hear about your loss i have a daughter that is epileptic when she was born she had had a stroke and about 3 years old had her first seizure they put her on keppra and it seemed to work she was only have seizures once a year but she top out on the dosage and they changed her meds now she having them twice a month she eight they want to do surgey but all her seizures are at night so im so scared to sleep im worried that sudep could happen to her but choking on her throw up or not breathing well cause you never know when she goin 2 have them like you stated they are getting longer and each one requires a hospital visit i didnt know about sudep even existed till today i dont know what to do as a parent sorry for rambling but need to talk to someone our hearts and prayers go out to you and your family

Mama Bee said...

I'm so sorry for your loss. Words can't express that much grief or do much to comfort it. I know that every mama who reads your story is stricken on your behalf.

I wish I knew what else to say, but everything sounds cliched. I have been enjoying reading your blog since finding you on small things for the yarn along. I'm gladdened by your posts and just happened to come across Ben's story and now, I'm in tears. I pray for you and your family as you continue on in life. I pray that the remainder of your years be sweet and kind to you and yours and that one glorious day, you will all be reunited again, forever.

Much love,

Mama Bee