You Are Mine

When my son was placed in my arms for the first time and I got to see the little person who had been growing within my womb for the last nine months, I remember thinking "This is our son." And he was. But really, he was God's son first. We all are. We are given to our earthly parents by God. The parents have the task of raising these children to know, love and serve our Creator and to look forward to the day that we reunite with Him in Heaven. It is a big job and I was just really beginning to understand that when Ben joined our family.

Seven and a half years later, I was standing in a little white chapel, packed full of family and friends, saying good-bye to my son. I honestly don't remember much of that day. I have little pieces here and there that stand out. I remember Jack fussing in my arms and someone taking him for me. I remember the smell of incense and the priest's comforting voice. I remember walking out of the chapel behind the casket while the choir (of which I was a member and they were like my second family) sang "How Great Thou Art". It seemed as though their voices were being lifted into the clouds each time the refrain was sung. I wondered how they were able to sing, because I couldn't. To this day, I cannot sing any of the songs from Ben's funeral Mass. The song I wanted the choir to sing was "You are Mine". It's beautiful melody and message had always been uplifting for me:

"Do not be afraid, I am with you."

I had such guilty feelings for not being there with Ben when he died. He was alone in bed. But the more I prayed, the more I realized that he wasn't alone. I received a strong, clear vision of Mary gently taking one of his small hands while he gazed up at her and then Jesus taking his other hand and his head gently turning to look into Jesus' eyes. They then started walking hand in hand away from me toward Heaven. Whenever angels appear to people in the Bible, the first thing they always say is "Do not be afraid". I know Ben was not afraid. How could he have been?

"I have called you each by name."

"Why my child?" I think it is impossible to not think that at some point in the grief that engulfs and consumes you in the wake of such a tragedy. Ben loved going to Mass and it showed. So much so, that our priest told me "I have been praying for our future priest the whole way here", upon arriving at the hospital that day. I realize that God had different plans for Ben. He was called to be here only a short time, and I know I won't fully understand why while I am still living. God called his name sooner than I would have liked.

"Come and follow me. I will bring you home."

God promises such wonderful things if only we choose Him. With complete trust, Ben learned and believed in God. He never doubted what I taught him. I like to think that Ben let me know that he had arrived at his new home in Heaven the night he died. There was a thunderstorm that was not forecast. It was crazy. The sky was several different colors, the wind was wild, and the lightening was right on top of us. It was as if Ben had found God's "weather machine" and was seeing what he could do. Ben was notorious for testing out how things work. I remember sitting on the couch with my family and we were actually able to smile at the idea of God gently shaking His head at Ben while he pulled levers and pushed buttons.

"I love you, and you are mine."

God loves us all and we are His. This sentence says so much in such little, simple words. We don't have to be smart to understand this. We don't really have to understand at all, we just need to believe it. Ben did.

This one's for you

Dear Ben,

It's your birthday again! We are going to Jamestown and Yorktown this weekend with Grandma and Pa. I know you would have had a great time there. I have a Mass being said for you on March 1, the first one available at our Church.

This year, your old Mom tried to be creative. I've changed the words to a Bob Dylan tune in your honor. My sweet Benny, I love you. There will forever be an ache in my heart for you.

For my blue eyed son:

Oh, where have you been, my blue-eyed son?

Oh, where have you been, my darling young one?

I've been dancing and singing my song up in Heaven.

I've watched the stars falling when you looked for them too.

I've sat right beside you when your heart was a'breakin.

I've prayed for my family that we'll all be together.

And it's a good, it's a good, it's a good place to be.

Oh, who did you meet, my blue-eyed son?

Oh, who did you meet, my darling young one?

I saw Mary take one hand and Jesus the other.

They guided me gently to meet our Great Father.

I've sung with the angels at Mass, did you hear me?

I welcomed Augustine, put my arm 'round my brother.

And it's a good, it's a good, it's a good place to be.

Happy Birthday, my son.

Love,

Mom

To Ben on your 10th birthday

Dear Ben,

I have been awake for a while now, thinking about what I would say to you on your birthday this year. Already, the tears are flowing, for I miss you so much that it is still a physical pain in my heart. What makes it harder is that your Dad is away on a band tour. I don't have his hugs today.

I don't know if I ever told you about the day an angel saved you from harm. You were little, not quite 2. It was late summer, and school would be starting soon. I would be teaching music 2 days a week at the girls' school and I had been praying about who would care for you on those days. I had just found out about a family at our Church who lived nearby and wanted to help us. The mother had two little ones at home and offered to watch you on those days. I brought all of you outside to play while I called this woman. You wanted to color with the sidewalk chalk on the driveway and the girls were riding bikes around you. I dialed the number and heard it ring. I had barely said hello when I looked up and you were no longer sitting there. I asked to her to wait a minute. I stood up and looked to see where you had wandered. Not by the swingset, so I turned toward the front of the house. There was a white truck at the edge of the driveway and a woman was holding you in her arms and walking up the driveway, telling me that you were about to wander into the street. I was so overcome, I just grabbed you and held you tight, crying at the idea of what could have happened. Then I remembered that I didn't say thank you to this kind lady, so I turned back around. She and the truck were gone. Vanished.

You were truly a blessing from above and I cherish every moment we shared with you. I thank God for the time we were given and I know I will hold you again someday.

Mom

A Bedtime Story

Once there was a doll named Angelo. A mother saw this doll among many others, but chose him to be her little girls first baby doll. But the little girl rarely played with the doll. And he lay in the cradle. Then the mother had another little girl. Again she presented Angelo to the second little girl. But this little girl rarely played with the doll. And he lay in the cradle. Then the mother had a son. She thought that a boy would not want a doll. But the mother was wrong. The little boy loved Angelo and slept with him every night for many years. Angelo now lay on the boy's bed. Another little girl came along, but she had her own doll. And then, another little boy was born to this family. When the baby was just learning to sit, the big brother came to his mother one night and said, "I would like Jack to have Angelo". This surprised the mother, for she knew how special the doll was to her son. The mother could never have imagined that the very next day her son would go to Heaven. She remembered her son's wish and tonight, as she tucked Jack into bed, Jack said to his mother, "Where's my baby that my Ben gave me?" And the mother smiled and cried.

Happy Birthday, my Benny

Dear Ben,

We had Mass said for you today at St. Matt's. I shed a few tears, for I miss you so dearly. There are days that seem like it has been too long since you went to meet our Heavenly Father, just as there are moments that I expect you to come galloping into the room and flash me that sweet smile. At this moment, know that if I could, I would take you in my arms and hold you so tight.

It is snowing as I am writing to you, dear Ben! Can you believe it? Tomorrow, we are going to the Great Wolf Lodge to have some warm weather fun to celebrate your birthday. I know you would love it and that is why we are going.

Oh, Ben, there is so much in my heart that I want to tell you, but words fail me. I love you and I am so proud to have had the privilege of being your mother.

Love,

Mom

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.


****UPDATED****
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!

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.