I know I have said it about 25 different times in my blogging lifetime. (okay maybe 250 times….)
But the way in which Evan hears music is not like the way I hear music. And I am an incredibly sensitive, emotional person. A canary, as Glennon Melton likes to call us.
But Evan hears music in his soul. In his heart. Not just with his ears. In fact his ears are probably the last place that hears the music.
When he was a young toddler, I noticed that when I would play hymns for him, he would become entranced. The more climactic the song, the better. Sometimes he would squeal for more. Sometimes he would sob at the end. Possibly because it was ending, possibly because the song swelled and his little sensitive heart couldn’t take it.. I’ll never know exactly.
Here he is at age 2 watching Carrie Underwood and Vince Gill sing “How Great Thou Art.” You’ll notice the legs kicking, the excited rolling of his arms, and the stare when he realizes the song is almost over.
About three months later, here he is following a hippotherapy session singing in the back seat. A child who was barely saying single words clearly, was able to sing the chorus to a hymn. (excuse the darkness, you can hear him clear as day)
And finally, I played him the same video with Carrie U and Vince Gill today. I had to splice together a few bits and pieces of his listening experience. We had Spotify on the TV so he just had the album cover and title on the screen.
The video caught it off at the end, but Evan looks at me with his glistening, teary eyes, and said, “How Great Thou Art again?”
I just wish for one minute I could be inside his complex mind and see what he is seeing and feeling.
I think one would be hard pressed to find a person who does not like music. I can’t imagine having someone say to me, “Music? Nah, not for me.”
Everyone finds a need for music in some way. It can relax you, excite you. Remind you of treasured memories. Ignite passion. Soothe frustration. Become a hobby. Even a profession.
If you have been reading for a while, you know Evan has Williams Syndrome, and in the spirit of Williams Syndrome Awareness month, if you are not familiar with this condition, please read about it here. Because of the gene deletion on the seventh chromosome, Evan has some developmental delays. One of those that is more pronounced in Evan than in most individuals with WS, is in the area of language. Receptively, Evan is very aware. As one of his therapists says, “he is an observer.” He takes it all in, and his vocabulary is much larger than he lets on. He reads on a first grade level and loves letters and words. However, for some reason, he chooses to speak mostly in three word phrases. I bring this up only to emphasize why music is so crucial in our house.
Music is as important to our relationship with Evan as pretty much every other aspect of parenting. That might sound crazy but I truly believe it.
If Evan has a tough time transitioning from one activity to another, we play music.
If Evan is stressed out after school and can barely say two words to me, we play music.
If Evan is not eating his dinner, we play music.
Different songs, genres, musicians for different circumstances.
This children’s music group has become more than just a fun way to fill some time.
He will be totally dysregulated after school- arms flailing around, grabbing at every remote or electronic device he can find. He seeks something familiar to calm him down after a full day of expectations, rules, and activities that are tough for him. Then I put on the Laurie Berkner Band cd or You Tube channel and his whole body relaxes. His arms and hands slowly start to be less impulsive and his eyes lock with mine while he sings along to the song.
“Cuddle you, Mommy?”
He will go from kicking and walking around aimlessly to curling up in his bed with me, singing along. Then the really amazing part might happen. He will be singing along with the song and start to change the lyrics to talk about his day, or what he would like to be doing. Or he will just change it up and use different animal sounds. Never missing a beat. Staying in tune.
Most importantly, he connects more freely with us. Evan shares more of himself when music is involved. The Laurie Berkner Band has been a Godsend.
So when this happened……..Evan’s world burst into a million rainbows and unicorns. And so did mine.
Evan meets his muse, Laurie Berkner
We had the opportunity to see the band in concert this past weekend. It was Evan’s first concert, and I couldn’t be happier that it was LBB. He stood off to the side of the stage bouncing occasionally, not singing much, but intently watching. He would utter the occasional, “Cuddle you, Laurie Berkner.”
I expected it would be a bit overwhelming for him, and it was. He listens to these songs and gazes at Laurie’s face in her videos on an almost daily basis. I find myself justifying the amount he watches/listens by thinking, “It’s better than mindless games on the I pad, right?” Don’t answer that. I know it’s better. 🙂
Following the show we had the incredible opportunity to do a meet and greet with Laurie and the members of her band. I have to admit, there was this tiny part of me that worried she wouldn’t live up to Evan’s expectations, and honestly….mine. I built up how awesome this woman must be because of how influential her music has been on Evan’s communication and level of engagement in the past year. I was worried also that Evan would clam up a bit or not be as excited as we expected. My expectations were completely unreasonable but I had them anyway.
Well folks, my expectations were exceeded.
Just look at these pictures:
After holding his hands and bouncing up and down for a minute or so, she scooped him right up into her lap. She sensed his high activity level and spoke softly and calmly the whole time. He leaned against her and relaxed in a way he rarely does with anyone. He definitely is a people lover, but he typically flits from person to person. With Laurie, he would have stayed in her lap for the night.
Look at his face. The gaze. Phew….
When his time was nearing an end, it was clear Evan was not ready to hop down. Without any prompting from me, she said something like, “Ok Evan, I am going to put you down really gently, ready, let’s count, one, two, three…..” and she slowly put him down.
Giving him warning, counting with him, I mean…..Melt.
I know this isn’t her first rodeo. She has her own beautiful daughter and she has been in the children’s music biz for years. But I watched her interact with child after child. I watched a young adult with a disability become so excited that he mouthed her arm, almost biting her a bit. She didn’t even flinch.
I walked away from the experience sobbing. Like, ugly, can’t catch your breath, you might scare someone sobbing. I was so overwhelmed with her humanity, her patience, and most of all, I was overwhelmed watching my little dude meet his idol. Sometimes I really wish I could get into his little head and know what he is thinking since he doesn’t really articulate the way I wish he would.
Tomorrow I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.
I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.
When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time. When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate. When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)
When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon. When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until, it’s not anymore.
When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy. Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.
But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”
I just keep walking that line.
The line between celebration and worry. The line between pride and guilt.
I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.
My stomach lurches. My back is dripping with sweat. I lunge after Evan time and time again to make sure he does not run down the aisle of the theater. I hold his hand and let him lead me to the lobby doors. He loudly shouts, light! light! light! and insists on getting to the “light.” Against my better judgement, I take him into the brightly sun lit lobby and let him run around, making sure he doesn’t touch the trash can, go up the steps, touch the other patrons, run out the front door, you name it. I feel my lip trembling and the warmth of tears touching the corners of my eyes. I feel jealous of the other parents sitting in the theater with their child who is happily watching the show. I then feel guilty for feeling jealous. This is his field trip, and not only that, but it is a live musical performance. I had been incredibly excited for this day, to share something I love with my son who has an uncanny connection to music. I was SURE he would love the experience. I hear familiar music ringing in the background. A song Evan knows! I was sure he would be happy if he heard the music, I was sure I could sit back down in the seats and join his class for the last five minutes.
I was wrong.
I tried to sit, and E crawled up my chest, and tried to get away from me yet again. He carried on loudly, protesting and wriggling all over our laps. Todd leaned over and said that we might as well leave, since it was almost over anyway and Evan clearly did not want to be in the seats. We were fighting a losing battle. We scrambled to gather up our things and get out of there with some sense of dignity. The parents, teachers, and children from E’s school watched the show intently, with popcorn bags and drinks in their laps.
His car seat buckled, his bags strewn about the back of the van. I had to go to work to get in a half day and Todd was bringing him home. I kissed Evan goodbye and felt my eyes film over. Todd asked if I was okay but I couldn’t muster the words. I realized that my reaction didn’t seem to match what had happened. Evan is a two and half year old. Two year olds don’t necessarily want to sit for any length of time. Why did this hurt so much?
I walked through the stinging cold wind and felt my cheeks burn. My stomach was tied in knots. All I wanted to do was sit alone and cry. It had been a while since I felt that way. Since I felt like we were outsiders. There was a sea of happy, healthy children who could watch a show, communicate their needs clearly, and be engaged. And Evan was hanging out in the baby pool, splashing about, not caring if he was a part of the sea or not.
My friend came over with her son over the holidays. Her son is only a few months older than Evan. They are buddies. We shared pregnancy adventures, new mom doubts, laughs, and tears. She is one of my dearest friends. While our boys were infants, her son would achieve milestones months and months before Evan.
Buddies for life
It made sense at the time because he is ten weeks older. I never worried or focused on it. I remember thinking, Evan would get there in his own time. After receiving E’s diagnosis, the gaps became wider. Well…actually they always were wide, I just accepted that they would not close in like I had thought they would. Her son is extremely verbal, always chatting,using multi-syllabic words, complex sentences. He tries to talk to Evan and Evan bounces happily in front of him, gazing at his buddy with awe and love. He often will try to say something, but it comes out more like a babble because he is so excited. I love having them together, since they have known each other since they were in our bellies.
I remember this day very clearly. Evan wanted to drink the water the whole time. 🙂
But I would be lying if I said it doesn’t put me right back to the baby pool-big sea situation sometimes. I watch Evan do his own thing, happily splashing away, unaware of any development gap or difference. Repeating a string of sayings over and over again. “Here we go!” “All aboard!” “Light on?” I love hearing our little guy talk. It’s just a little different when you have an example of age appropriate speech right in front of you. My friend’s son uses interjections, adjectives, a rich vocabulary. I could listen to him talk for hours. I videotaped him counting a long time ago when I was babysitting him because I found it amazing to hear him count. Evan is using two word combinations, and he only really adds on the word please to make the second word. And who cares, right? Certainly not Evan.
E happily splashes in his baby pool. His smile does not fade when another child expresses his or her need more clearly than him. He does not notice that he is wearing orthotics and still using a wider gait and walking on his tip toes. He does not mind that the children at school are sitting in their chairs without any straps and buckles and he is strapped into a booster seat to sit at the table. He does not catch the second glance the mom in line gives him and me when I say he is 2.5 and he is shouting vowel sounds in the line at Target.
Evan loves the baby pool. He loves when others allow him to enjoy the baby pool. He also loves when you jump in with him. Play with him on his level, see the water through his eyes. When he is allowed to push buttons for a little while. Allowed to shout church hymns at the top of his lungs in the grocery store. (only his mama knows they are actual songs) Allowed to turn on and off the light switch a few times every time you enter the room. Allowed to chase the stroller so he can spin the wheels for a little while.
When I was a little girl, I could spend hours in the baby pool by myself. Splashing around, using my imagination to pretend I was floating in the ocean, that I was a mermaid waiting to be rescued. It’s not a bad place to spend some time. If Evan doesn’t mind it, there is no reason why I should be concerned. Doesn’t mean he won’t still receive swimming lessons or that he will not be asked to try out the deep end at some point. But for now, the baby pool is just right for him.
It’s no secret that I over-think things. You don’t have to be my oldest and closest confidante to know that I over-analyze until I’m blue. Just read a few blog posts.
I try my darndest to err on the positive side of things, looking at the glass as half full. But that glass can tip dangerously to the side sometimes, and the water falls out drop by drop. And with it, my positive attitude.
I set my alarm 20 min ahead, I lay out my outfit, empty the dishwasher the night before. I line up the many bags I take to to work and to drop off Evan at school. Evan is sleeping soundly, and I close my eyes for a peaceful night’s rest.
The glass is half full, looking plentiful and teeming with water.
Overnight I lie awake listening to the sounds of my dog absentmindedly licking her paws, my husband snoring, and Evan talking in his sleep. My alarm goes off and I realize I have only slept about 3 hours total. I realize Evan’s best cup is in the backseat of the van, and I forgot it was my brother in law’s birthday, and shoot, I didn’t get more Walmart brand generic Pediasure on the way home from work the day before. I run around trying to get ready but I get distracted about six different times because my energy level is so depleted from no sleep. The glass starts to tip to the side.
I drop Evan off at school, and I realize it was “Wear Brown” day and he is in orange. I write a hastily scrawled note to Evan’s teacher to let her know that he has physical therapy that day at school. “Should have told them that earlier in the week so they could have prepared….” I think to myself. I run out the door to get in the car because I have a meeting at work that I am already 5 minutes late for and I haven’t even left Evan’s school.
After fumbling through my 43 different keys on my key chain to find he one that opens the school door, I run to the meeting. My administrator is already speaking and there are no chairs. I kneel on the floor to avoid looking conspicuous which ends up making me stick out all the more.
Head, Shoulders…knees and…
I try to save face by blaming my lateness on traffic, and a wardrobe malfunction with my son. Which is partiallytrue but ends up sounding very pathetic and false when I spit it out.
Three of my students come in from morning recess complaining of someone “butting in front of them” in line. One will not let this go, interrupting me repeatedly to say how unfair it is that he would lose his place in line because of someone else making a poor choice. My cell phone rings entirely too loudly on my desk, it is one of Evan’s therapists asking about a schedule change or the insurance company seeking missing paperwork I needed for possible reimbursement. I think about answering, but decide not to because the pledge of allegiance begins on the loudspeaker. I feel guilty for not answering. I would have felt guilty FOR answering.
But then there is this:
Our light. Our heart. The boy who can sing the same refrain to a song for an hour straight, putting different spins on the tune and intonation.
The boy who could barely pull himself up when lying in your lap a year ago, and now can do 20 sit ups on the exercise ball.
The boy who will say “I love you” (a very cute approximation anyway) if you just lean over him in his crib for an extra 15 seconds without saying a word. Letting him take his time to respond.
It doesn’t take a degree in rocket science to know why this guy was born.
Totally on an non-typical note, I have to share some thoughts I have had while listening to Sirius radio in our swagger wagon.
We received a free 6 month subscription to Sirius when we got the van back in August of last year. We quickly fell in love with the idea of having non-commercial radio that had a multitude of listening options at our fingertips. Over the months I got used to being able to go between kiddie songs, Broadway showtunes, 90’s hits, and alt rock. (I call it hipster lite) As a gift for me around Christmas time, Todd extended the subscription (through another deal, of course, that is how the Putmans roll) Sometimes I find it to be a little repetitive, you can tell that they have a master list they pick from and often there are repeats. Luckily, I manage to cycle through the stations often enough not to care.
But I digress…..if I am being honest, I really do listen to the Broadway station most of all. Since Evan loves music, especially ones with lively melodies, changing tones, etc- it works out for both of us.
Yesterday one of my absolute favorite songs came on, the West Side Story Quintet. You know the one (well probably a small percentage of you do), where Anita sings, “Anita’s gonna get her kicks tonightttttt…..we’ll have a private little mix tonighttttt……..” Yup, that one. I attempt to sing all five parts. Loudly, and without abandon. I kept looking in my rear view mirror to see if it was making E laugh, or possibly cry. He was not moved to either emotion, he played with a truck, quietly intrigued with it.
The song ends and immediately they go into “Stars” from Les Miserables. Okay………. Really, Sirius? You go from my one of my favorites to one of the songs I despise the most in musical theater? Ugh……and I hear a little voice from the backseat. Evan is babble/singing along with Javert from the 1987 soundtrack. The strength and even tone of his voice seemed to appeal to little E. He smiled and made his voice modulate along with the vocalist. It made me listen to the song again with a different ear. Oh Evan, there you go again changing your mama’s stubborn point of view.
Today I heard “At the Ballet” from Chorus Line. Christine Pedi, who talks in between songs occasionally, gave such an interesting intro to the song. She said that she would love for there to be a concert version of this show so that non dancers could sing some of the songs. This song is sung by three of the actresses in the show, and it is another one of my favorites. The harmony is haunting and the feeling behind the lyrics is painful and beautiful at the same time. Christine suggested Betty Buckley, Patti LuPone and I can’t remember the other actress. Man I love me some LuPone….I’ll save my story for meeting her for another day. Alas, I didn’t say much at all….. I found this awesome you tube of Kelly Bishop (Lorelei’s mom on Gilmore Girls!) singing lead in the song. She won a Tony for this performance. Love her. Maybe one day I’ll find a reason and way to sing this song. (no dancing required of course)
Lastly, “Rent” came on, the opening song. Of course, having not heard this song in quite some time, I turned it up and sang my heart out. Evey word, every harmony came back to me. Back in 1997 when I was a freshman in college, I began my obsess….ahem…love of this musical. I was at a prime age to fall in love with “Rent.” I can remember seeing it for the first time on Broadway, having never listened to the soundtrack once. I knew nothing about it really, except that we were going to be sitting up close because the first two rows were saved for “student rush.” We waited in line for almost an entire day and then took our seats. I can remember feeling like the musical “spoke” directly to me. I feel silly saying that now, but at the time, as a young, headstrong, insecure college student, it was true. Jesse L. Martin who played Tom Collins in the original Broadway cast pointed right at me! (he did, right? don’t answer that….) In 1997, I was a hot mess of fears, excitements, heartbreak, and risk. I feel like “Rent” is all of those things too. The theme of the show, “No Day But Today,” still feels applicable and accessible to me as a thirty five year old mother and wife. Many other things about the show feel very outdated and silly to me now, but that could also be because I saw the show over 20 times on stage. Sigh………………Ah youth. I have to REALLY want to see a show now to consider shelling out the money for tickets. And sleeping on a sidewalk over night for student rush? Not so sure I would be up for that.
Another memory I had while singing along to the song, was driving with my friend Joe up to NYC, and singing the entire sound track together. We would choose which part to sing for each song. Now, that I would be up for today. 🙂
Thank you for indulging my musical tangent……I will be back to regular blogging very soon.