I originally “met” Jenny Reosti through an email shortly after her seven-year-old son died unexpectedly in 2007 of a condition called SUDEP (Sudden Unexpected Death in Epileptic Patients). Over the past year we have corresponded regularly, and I have been so touched and inspired by her faith in the face of tragedy that I asked her to do a guest post to share a bit of her wisdom and her son’s story with all of you.
I feel that I owe it to my son to make some positive changes in my own life after his tragic death. I have spent a lot of time thinking about what God wants me to do and the message I have received is to spread the word. Tell others not only his story but let them know how precious each day is. There is a prayer I say with my children at the start of the day that has really hammered God’s message in my head:
Lord, thank You for another day
within this life of mine.
Give me the strength to live it well,
whatever I may find.
Bestow from Your abundance
whatever I may lack.
To use the hours wisely,
for I cannot have them back.
Lord, thank You for another day,
in which to make amends
for little slights or petty words,
inflicted on my friends.
For sometimes losing patience
with problems that I find.
For seeing faults in other lives,
but not the ones in mine.
Lord, thank You for another chance,
in which to try to be
a little more deserving
of the gifts You’ve given me.
For yesterday is over,
and tomorrow’s far away,
and I remain committed
to the good I do today!
Ben definitely lived his life to the fullest. He did all things whole-heartedly, whether going to Mass, playing with friends, or just pretending in his imaginary world. So many times each day, I will catch myself not appreciating all that God has bestowed upon me. I am working on enjoying the moment rather than planning for that perfect moment that may never happen.
The day Ben died was an ordinary Saturday, with the exception that the piano tuner was coming by to fix our piano. I remember wanting to have the house looking clean for when he came. I am forever grateful that I took the 15-20 minutes to watch Ben and his 7-month-old brother play together in my room, rather than try to run downstairs and clean. Jack had just started sitting well, yet Ben was watchful for any signs that Jack might fall. They were playing so sweetly and I just watched and thought about all the great times these two would have together. I could never have imagined that in 2 short hours, all these dreams would never come true.
Ben came into this world screaming and didn’t stop complaining for a year. Then, like a switch being turned off, he stopped crying. He was suddenly happy, funny, and loving. It was such a joy to see all the sorrow gone and this zest for life developing. Then, when he was 14 months old, he had a seizure while he was sick with a fever. The doctors reassured us that this was a common thing to happen with a fever. But over the next days, he continued to have seizures even though the fever was gone. After many tests and a hospital stay, the doctors put Ben on seizure medication and sent us home. By the age of 3, he was diagnosed with epilepsy but the seizures were almost completely controlled by his medication and he lived the life of a normal kid.
Saturday morning. Ben came to me a little later and said his head hurt. The other kids had recently had head colds and so I figured he was the next one to get the cold. I gave him some medicine for the headache. He wanted to lie down so he went to his room. I went downstairs at that time and finally did a fast clean-up before the tuner arrived. He stayed about 90 minutes. It was getting close to lunch by the time the tuner left. I called for Ben but he did not answer me. I went upstairs but I had this horrible feeling that something was wrong. I found Ben in his bed, dead.
We now know that he died of SUDEP, which stands for Sudden Unexpected Death in Epileptic Patients. We had never been told that this was even a possibility. Our little world as we knew it was shattered. Over the next days and months, I had so many thoughts and feelings. They were mainly things that usually seem so small. I didn’t tell him good-bye. I didn’t get to say “I love you” or hold him as he left us.
Life is so precious. It is easy to get caught up in the day to day tasks and forget what is most important. Ben was a very affectionate child. He did not hold back on the hugs, kisses, and smiles. I truly feel that Ben wants me to let others know that those little things you do each day are so important. We can’t have the hours back, so use them well.
I believe that God is also asking me to raise awareness of SUDEP and to provide a support group for those who are grieving because of SUDEP. This is a huge undertaking for me. I will take it one step a time and pray for God’s guidance. At this time, I have a blog page set up in remembrance of Ben that I am slowly transforming into a site to provide support and information about SUDEP. Please stop by at reosti.blogspot.com.
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