Sunday, July 8, 2012


I wrote "The Lost Musician" because an opportunity came up to play my flute at church and it stirred something within me. I'm finally at the place where I *can* play a bit more, as I'm not out of breath from being pregnant or nursing anybody or dealing with a feeding tube.

So today, I played my flute at church and it was wonderful just to play. I was more nervous than I remember being, mostly because I knew I was a little rusty. Even so, it was wonderful. And people enjoyed it, which is really all I need to know it was worthwhile.

Our pastor also asked me to speak briefly (as if I'm brief...) about where I've seen God lately. I wanted to share with you what I wrote:

“No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.” First John 4, verse 12.

Good morning, everyone. My name is Ali Shenk, and my husband is Bob, a minister in the PC(USA). We have 3 young boys who you may have seen running around the church.

I’m here because Bob Ratchford [our pastor] asked me to speak about where I’ve seen God lately. Piece of cake.

I want to tell you about one of my teachers, someone who I’ve known for the last 3 years, someone who does not talk much and yet has lots to say about unconditional love, forgiveness, and compassion.

Some of you have met him. He’s my son Dean.

Dean has a rare, non-inherited genetic disorder called Prader-Willi syndrome. Somewhere along the way, part of his 15th chromosome didn’t show up, and unfortunately that missing piece of DNA is responsible for quite a bit.

I won’t go into all the details of Dean’s first few years, but it has involved feeding tubes; injections; medications; surgeries; hospitalizations; endless physical, occupational, and speech therapies; and more. This will continue throughout his lifetime. Yet despite Dean's disability, it's impossible not to see God living and loving through him.

Bob usually gets up with the boys at the crack of dawn because he can withstand less sleep than I can. So when I wake up and see the boys, Dean comes running to me yelling, “YEAAAAAAHHHH! MOOOOOOOMM!!!” Is there a better way to wake up??? He does the same for Bob when he comes home from work. I see God every day in Dean's love for us.

When we go to a public place, like the mall, Starbucks, or the park, Dean has his eyes on the people around him. He will hug anyone without prompting. When we go shopping at Target, he rarely asks for toys because he’s so excited about the pictures of people hanging on the wall using the products that are sold throughout the store.

I’ve tried to figure out if there is a pattern to the people Dean chooses to show his affection – are they female? Old? Tall? Wealthy? Bearded? Asian? Jewish? Well-dressed? I’ve found no pattern; he just cares about everyone. Are you that nonjudgmental? Do you select the people who you deem worthy of your attention and affection? I know I unfortunately often do. Dean doesn't. He's missing genetic material and is still this way; so what's our excuse?

Because of his very low muscle tone, Dean only learned to walk less than a year ago. In the absence of his body supporting his muscles like it does for you or I, he has to use incredible strength to do the motor activities that most people do easily. And because no one can be that strong every second of the day, Dean falls a lot. A lot….

Recently, we went with some friends and their kids to a place called Pump it Up in Chesterfield. It's an indoor play place with lots of inflatable rides. Dean, as always, was falling... Even more than usual. Even with supervision, he had one very bad fall that had me on edge; turned out he was ok. Then soon after, he fell again pretty badly and I'd just had it.

Some days, it's all just too much to deal with everything that Dean faces. I sat down on a bench and cried. I cried the same thing I cried the day Dean was born, the day he was diagnosed, and many days after: Lord, why my little boy? Dean saw me crying and came over to put his arms around me and give me a hug. He said, “ohhhhhhhhhhhhhhh, Mom.”

Here I was, crying and asking WHY it was that my son had to suffer, WHY things were so hard for him, why, why WHY… and the one who was supposedly suffering was the one who comforted me. In the same manner, the Savior who suffered and died is the one who comforts US in our pain. So who is disabled: Dean, or me? In this sweet, 3-year-old boy, God is present and points my heart back to Him.


Candice said...

How beautiful! Thank you for sharing!!

Just like Dean, it is impossible to be strong all the time. That's why we have to support each other. Obviously Deano saw fit to support him mom during one of those times!

Giulia said...

After all this, I feel more disabled than Dean. Even with what professionals consider as "giftedness" (the psychologist told me about a giftedness but misleading tests when I was 13 yo, I was not diagnosed neither with my Single Sided Deafness nor with my ADHD. Both of these diagnoses came later, at 14 yo and at 23 yo respectively).

On one hand, I need less support for daily life than he will need at my age but on the other hand, I was so often judged that I lost all ability to forgive.
Probably the most important is the second, and in this sense, I feel much more disabled than Dean.

So yes, Dean is more able than I am.
In order not to be misunderstood, I simply acknowledge that Dean is more able than I am.
I don't feel offended at all, I don't feel jealous at all, I just acknowledge that Dean is more able than I am.
Yes, someone can expect that I have to be sad or jealous. But contrary to what the world must expect, I don't.
I simply notice that Dean is more able than I am despite needing much more supports to thrive. I would like to add : "So what ? It's life".

Could you tell these words to Dean the day he feels sad about having PWS ?
Can you tell him that in a certain way, he is much more able than a "gifted person" can be ? (I use the quotation marks because it is a quotation from professionals)

Ali Foley Shenk said...

Giulia, I will be sure to tell him.

Janet Gulley said...

Deano is one awesome little dude and adorable reflection of God.

Maegan0514 said...

So touching Ali!