Tuesday, December 23, 2008

my little drummer boy

One of the first years we were in Georgia, our Church had a children's Christmas program during Mass in which they re-enacted the Nativity. I do not even remember how it happened that Ben was to be the little drummer boy. I cherish the memory of watching him with a drum over his shoulder, marching solemnly around the Church while I was playing "Little Drummer Boy" with the choir. I remember tearing up as he took his part so seriously.

I have been missing him deeply during Advent. I hear songs that he loved to sing and my arms ache to hold him one more time. To kiss his sweet head and hear him sing to me.

On a more light-hearted note, we have an Elvis Christmas CD that Ben loved to listen to all year. I always smile when I think of him belting out with Elvis "Santa Claus is Back in Town". He had some good dance moves too.

Merry Christmas son.

We just returned from the Vigil Mass. The opening hymn was O Come All Ye Faithful. The trumpets blared, and the altar boys rang the bells through the entire song. It was so beautiful that a smile immediately spread over my face. Then the second verse started "Sing, choirs of angels.." and I knew that Ben was in THAT choir and was rejoicing with us. My heart was filled with joy!

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.

Monday, August 11, 2008

A hard day

One year ago today, Ben went to his new home in Heaven. I miss him so passionately. I still cannot fathom that I will not hold him again. My heart skips a beat when I realize the truth.

Little Ben, I am trying to stay strong. Please intercede for your mama and ask God to give our family all the graces we need to continue each day without your smile, charm, and hugs.

I love you.

Saturday, May 24, 2008

Buffalo's and Ants

I like it when something triggers my memory of a funny story that could have easily been forever lost. I can't recall the trigger now, but here is the story:

When we first moved to Ft. Stewart, the folk choir would go out to eat after Mass. It became a custom to go to Buffalo's. Ben enjoyed the BBQ chicken wings more than most people. He could polish off a basket of 10 wings himself. The process was more than messy. No one was allowed to wipe his hands or face until he was done eating. Most nights, the sauce would be up to his wrists and quite often I would find it in his ears. I always enjoyed watching him eat his wings.

After dinner, we would stand in the parking lot chatting before heading home. One evening, I looked over at Ben and he was chewing on something. I asked him to spit out whatever was in his mouth. He did and handed it to me. It was a piece of candy. I asked him where he had found it and he pointed to the ground. I then asked him why he had chosen to do so and he answered me matter-of-factly, "Because it was the one without any ants on it."

Tuesday, April 8, 2008

ramblings of a sad mama

There are so many things that Ben did not get to do. Mostly, I can think about all the experiences he did have and find much comfort. This, however, is hard. He did not get to make his First Holy Communion. It was something he was eagerly looking forward to doing. I was going to prepare my son this year. Next weekend is when he would have done so. I read someone describe this as the "first taste of Heaven". I wanted to be there for his first taste. Instead, I received it for him in the emergency room as our priest gave him the Last Rites. It brings tears to my eyes and makes my heart ache each time I think of this. I was not there when he left this world to experience truly his first glimpse of Heaven. God knows why it happened that way, but as a mommy, I feel like I let him down not being there to reassure him and hold him and say good-bye. This morning on my walk, the air was crisp and I was reflecting on not being able to say good-bye. I heard his little voice so happy and clear say "bye mama".

When I think about the mysteries of the rosary, there are such definite emotions--joyful, sorrowful, glorious. I feel like I am in the midst of my own sorrowful mysteries. I don't know why God has put these things in my life, but I am trying my best to carry this cross. So many friends are reuniting with their husbands after this long deployment. I have such joy in my heart for them. I sometimes feel like we were stripped of that happy homecoming. Tony's homecoming was heartbreaking. Hopefully this season of sorrow will strengthen and mold our family in ways that will bring us closer to what God wants us to be.

Friday, February 22, 2008

Eight Years Ago...

My dear Benjamin,

Eight years ago today, God blessed us with you, our beautiful firstborn son. We were all filled with joy to meet you.

I am so glad I had seven and a half years to be your mommy and see you grow and laugh and love. I do not understand why our time together had to be so short. I had a vision that Mary and Jesus came to your room and gently took your hands in theirs and guided you to Heaven. That has brought me such comfort to know that your Heavenly Mother was there for you so that you would not be scared in your new surroundings.

Happy Birthday, my sweet Benny. I hope that you will be with us in spirit as we celebrate you and the time we had together. I love you, son.


Wednesday, January 16, 2008

waiting it out

In February of 2006, we took a trip to Disneyworld. Ben wanted to do everything. The Tower of Terror was no exception. I can remember the enthusiam that exuded from him as we stood in line. He was still excited as we ascended up the "elevator shaft". But as the ride plummetted, so did his enthusiam. He turned to me and said in a small voice, "I'm scared! I really am." As his mom, I wanted to push a magic button and get us off the ride. But I knew the only thing I could do was to hold him tight until the ride stopped and the scariness was over.

That is how I feel right now. I want God to push the magic button and make this all go away. But all I can do is hold on tight to Him.

Later in the trip, he got a Mr. Incredible outfit complete with muscles (We celebrated his 6th birthday there). His infectous smile and uncontainable enthusiam returned. I knew that the scary feeling had gone for now and in his costume he felt he like he could conquer the world. And he has.

I am still waiting it out, holding on tight. I hope God hears my small voice, calling to Him, "I'm sad. I really am."