Always Hungry for a Cure, Even on His Birthday

Hi everyone! It’s really late and I can’t sleep. I’m ruminating about all the little things I have to do tomorrow and all the ways I could have been a better mother today. Welcome to my psyche.

Tomorrow is my son Lincoln’s birthday. I cannot believe he is going to be ten. Actually, looking at my watch, he already is.

With my other kids, the main focus for each birthday is always the special food I will make and I am always happy to oblige. For Lincoln, the birthday food holds great interest, but in a different way. Because of the fact that Lincoln has Prader Willi syndrome, we still need to carefully monitor what he eats, his birthday being no exception.

He wants all that good stuff but I can’t comfortably indulge him by bestowing upon him a huge piece of chocolate cake for breakfast or bring him to a restaurant to get a mile high stack of pancakes with cream cheese frosting. Offering him high calorie foods as a special treat, even on his birthday, would set a behavior pattern in place that is difficult to reverse and dangerous.

You can read up on all the features of this syndrome and even donate to the cause if you are moved to do so and I won’t even ask you to dump a pail of ice water on your head. Here’s my fundraising page: Donate to Prader Willi Research.

Enough about the challenging food stuff. What I really want to share with you is a snapshot of our life to tell you a bit about who Lincoln is.

Earlier this year, two boys working on a mitzvah project for their Bar Mitzvahs helped Lincoln learn how to make rainbow loom bracelets, something he had never been able to do but always wanted to. After six months, he did indeed learn.

A few months ago, at the start of summer on a blazing hot weekend afternoon, Lincoln reminded me that I said he could have a rainbow loom bracelet sale.

Did I really say that?

I knew what this would mean; Lincoln screaming at cars driving by our not very populated street at the top of his lungs, selling his wares.

Part of my trying to talk him out of it was my own laziness. Who the hell wants to sit outside on a hot, humid, mosquito filled afternoon, having to be vigilant so that he wouldn’t run into the street to get a stopped car’s driver to buy a bracelet? I just wanted to relax inside.

My resistance also stemmed from the belief that NOBODY was going to stop by and spend TWO BUCKS on these bracelets, the outrageous price he had set. School was out, no kids were going to be walking by at this time of day and even if they were, they wouldn’t want my son’s less than perfectly woven rainbow loom bracelets. I didn’t want his feelings to be hurt.

Lastly and to be painfully honest, I was not, nor am I ever, in the mood to play the role of special needs child’s mom where it will be ever so evident to anyone within 5 miles of his rainbow loom bracelet selling screams that there is something “off” about this kid. It’s embarrassing and exhausting, I’m not going to lie.

If you know Lincoln, however, you know he will persist and get his way. He wanted to sell those damn rainbow loom bracelets and was determined to do it. So I relented.

I sat back on the porch as he sat on a chair on the grass, behind a bridge table that I set up. It was more to serve as a barrier between him and the street, should the desire to run into oncoming traffic strike him if he thought there was a potential customer.

I cringed every time he screamed, “RAINBOW LOOM BRACELETS!!!!!!!!!! RAINBOW LOOM BRACELETS FOR SALE!!!!! TWO DOLLARS!!!!!!!!!!!!!!!!!”

We sat there for a while, me periodically yelling to him, “Lincoln, it’s the end of the day, nobody is around. Let’s try a different day when school starts.”

He wouldn’t have it. He sat behind his little desk with his rainbow loom bracelets spread across it like he was a vendor at a crafts fair.

Just as I was about to demand that he close up shop, a huge man walked over from across the street. What was he doing? He talked to Lincoln for a bit, pulled out his wallet, and paid the two bucks.

Well, I’ll be damned!

I hoped that Lincoln would be happy enough to call it a day with his sale but no! To him, this was just the beginning! He was inspired and planned to sell every last one of those things!

I rolled my eyes up there on my porch and just as I was about to go inside, I saw our neighbor and barber pull up to chat with Lincoln. What was that? He was pulling out his wallet and paying this weaver of rubbery circles two bucks! I couldn’t believe it!

Slowly but surely, one after another, neighbors from all over were stopping by, checking out Lincoln’s goods and forking over the cash. Lincoln was in his glory, huge smile, yelling out the price and wheeling and dealing.

Before long, I kid you not, Lincoln sold every single rainbow loom bracelet. He had a bunch of money and couldn’t help repeating (ad nauseum in his inimitable way),

“I told you so, Mommy!!! I told you I would sell them!”

I was touched. I was never so aware of what inclusion meant, how fortunate we were that everyone knew Lincoln and knew how to make him feel special. They took a few minutes out of their day to let him know they cared. I had always loved our neighborhood but had never fully realized that this neighborhood was, in a small and subtle way, an extension of our family.

And that Lincoln’s kindness and joie de vivre brings that out in others.

It also goes without saying that it was yet another reminder to never underestimate our children and what they can achieve.

Happy birthday, Lincoln!

Again, to learn more about Prader Willi Syndrome and to donate to help our kids live a more independent life through research, please go to our family’s fundraising page: One Small Step Fundraiser


12 Responses

  1. Happy Birthday Lincoln! This was beautiful Alma… are a fantastic mother. So good to see you the other day.

  2. alma I loved this post. On so many levels it’s truly inspiring. I’m sure your neighborliness has helped to create that sense of community that Lincoln, your neighbors, and we all get to enjoy. It may be that Lincoln”s sale was more about creating opportunities for neighbors to be the kinds of people they want to be.

  3. Awww, wish I coulda been there too…I can hear him now. Maybe for another one, he’s a success! And so are you. Love you, Pamela

  4. I don’t even eat cookies and I would have bought one! I’ve always so enjoyed Lincoln. He has a smile like he swallowed the sun.

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