Often when we are in the car, Nick wants to sing. He picks the genre of the song based on the circumstances. For example, in Ireland we sing Irish songs, in December it is Christmas carols, and on Sundays it is hymns. He can sing for the entire length of the car ride, even hours, if we let him.
The singing will get interrupted. Sometimes it is a phone call, or Arden and I want to talk about something, or even our voices are tired and we want to stop. Whatever it is, Nick will sit quietly there until we are finished and then say, “Can I go on?” meaning can I start singing again.
Many times, I have forgotten where we were in the song, sometimes I even didn’t remember that we were singing. Not Nick. He remembers. It is like he has a CD player in his head and it is on pause until he hits the play button again, starting up just where he left off.
Nick will sing the next line and if one of us doesn’t join in with him, he will stop and repeat the line again and again until we comply. It is incredible and can be frustrating at the same time when we try and redirect him when he is stuck on something.
He has a playlist in this mental CD player that can shuffle the order around. He will start singing the next song just as Arden and I are still singing the last note of the current song. Since the song order is always changing, we don’t know what song is coming next. If we want to sing a different song, it is not easy to insert this alternate song in his playlist. He pauses and starts singing what he wants to again. If we are insistent, and sing what we want to, he usually will not join in with us. As long as he is the conductor all is well…
Some of the songs he sings we haven’t heard for years, others seem to be his favorites. Last month, we were in the car with my sister Rosie and she played newly released song for Nick. The genre was gospel music and I know that Arden and I had never heard it on the radio or a CD. It was beautiful. Nick immediately began singing the chorus. He knew that song as well as he knew many others that he has sung for years. It was a very poignant moment, God was near.
I believe that this musical ability is Nick’s genius. He inspires me.
Please share this blog if it resonates with you or you know someone who might benefit from it. If you want to get a copy of the book as soon as it is available, click here to sign up.
4 Comments
Hi Eva…I became your FB friend last week after I received a friend request from you. At first I kept thinking, who is this person and should I accept, but then I looked at your FB page and I realize we have a bond. Sons with Lennox Gastaut Syndrome. I am enjoying reading your blog and identify with so much of it. Looking at the picture of Nick in your car, there is something about it that reminds me of my sweet Preston. His fingers. I don’t know if a dr ever told you but a neurologist that diagnosed Preston years ago said that a person with Lennox Gastaut will have tapered fingers. Part 1…told me my post was to long.
part 2……I never thought much more about it but just looking at your son’s picture I notice his fingers look so much like Prestons. My precious son passed away on March 8 of this year and we are of course heartbroken. Just like you, we did everything possible to make Preston’s like fun in spite of those hateful seizures. My faith in God sustains me now because I know that someday I will be rejoined with Preston. Thanks for your blog and your posts.
How old was Preston?
37
Comments are closed.