Last Saturday, I attended a memorial servic for a little seven year old boy at church who passed away from SUDEP. Wolly (not his real name) suffered from severe seizures and tried 10 different antiepileptic medications with no seizure reductions. According to his parents, they found him cold and unconscious in the morning and they could not revive him. They are going through my worst nightmare right now. His parents, Lisa and Miguel (not real names) attends the same support group at church for parents of kids with special needs as us. Out of everyone's stories in the group, their story resonated with my own journey with Lucas because our kids were the only two in the group who suffered seizures. I bought a sympathy card but could not find the words to write in it. Had I not a child with a similar condition, I would have written the usual cliche sayings. This time, I just stared at the card and my mind was a complete blank. I wondered what I would want to hear had I been in their shoes and what would give me comfort and the only thing that felt right was "we are here for you if you need anything". I think that is what I would want to hear the most- knowing that there is a community of love and support around me that cared for my family in such times.
The very next day, our family attended our first Dup15q Alliance family conference. It was held locally at Redondo Beach which made it easier for us to attend. It started on Sunday evening with a meet and greet and ended Wednesday afternoon. We were only able to attend for two days, Monday and Tuesday due to Gabe's work obligations. It was a positive experience and we were able to meet a few children whose behaviors reminded me so much of Lucas. We weren't able to meet a lot of people because we felt so rushed going from one session after another and keeping both kids calm and occupied can be a challenge. So many faces seemed familiar from facebook that I felt I knew them all already even though we have never met. The presentations we liked most were for communication technology, children's parade, research updates and moms' discussion sessions. They even had researchers who were taking data on site and Lucas participated in a gait study and also a DNA study.
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| We made it to our first conference! |
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| Even Tae Tae got dressed to show support for his older brother. |
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| "Believe" wristbands from the Dup15 store. |
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| Tae Tae is the unoffical keeper of the flags. |
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| The Children's Parade: Luki gave so many high fives! |
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| He enjoyed eating the landscaping around the hotel. |
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| His latest thing is chewing on leaves. |
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| Washing his hands always calms him down. |
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| He had a good time! |
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| looking cool. |
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| Dinner at Redondo pier after a long day. |
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| Time to reflect. |
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| This is how Gabe eats dinner now. |
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| This is how I brush my teeth now. |
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