Virtual Hugs

WOW! A lot has happened since Night to Shine! One more thing to be grateful for in this season - Night to Shine was before COVID-19!

“How’s Cory doing?” is the most frequently asked question we receive. I’m delighted to say that he is doing very well. He misses going to the elementary school and seeing the kids but he’s keeping busy with online workouts, learning to play new games, puzzles, audio books and work. Thank you God he gets to continue working!

When this all started, we were pretty nervous about whether or not he would be able to give up hugging people. ‘Cory hugs’ are a thing. He is known for giving hugs where you know he means it. So when social distancing began, we explained to him that for a while, he would only be able to hug Mom and Dad. People are getting sick because germs are spreading and if he hugs someone, he could make them sick or he could get sick. If he hugs people, Hy-Vee will probably ask him to stay home until this is over for his safety and for the safety of the other workers and customers. We trained his caregivers on the new protocol - to remind him before going anywhere (that’s when we could still go places) and most especially work, “Remember, we’re only hugging Mom and Dad right now because we want to make sure everyone stays healthy.” If he goes in for a hug, jump between him and give him the reminder again. Once again Cory surprises us and he gets it right away. After just a couple of reminders, he starts offering his elbow and eventually, he gives that up too and seems content to just offer a big “Hello!” and “How are you today?” When I get home from work that first day, instead of getting a hug like I usually do, Cory offers me his elbow. A giggle escapes as I grab him for a hug. “I LOVE that you just did that but Mom and Dad still get hugs!”

Mike gets an idea…

Ever the idea guy, Mike thinks we should order purple bracelets to offer to people as Cory hugs until he can hug them again.

We put a note with them

and stick them in a small bag. Cory and I deliver them around town. Taping them to peoples’ doors, we ring the doorbell and run back to the car.

It’s a beautiful day so we catch some people in their yards or driveways but we practice social distancing.

We mail some to our friends who aren’t within delivery distance.

The texts start coming in…

…and pictures

Once again, God’s economy shines through. We thought it would be a blessing for people to receive these little virtual hugs. By all accounts, they did AND we ended up being blessed in return through the texts and pictures.

If you’re a friend of Cory’s and we missed you, please accept our most sincere apologies. We honestly tried but Dallas county no longer lets you look up addresses by name and some postmasters are just downright grumpy (we’ve gotten one bracelet back twice with no explanation - sorry Emma ;0). If you want a bracelet or know someone who would appreciate one, email dawn@dawnmschneider.com. Provide the name, address and how many and we’ll get them in the mail until they run out. In the meantime, stay safe and well.

Mom Fail

It’s Cory’s favorite night of the year.  He talks about it all year long.  It’s the one night when all of his friends are together in one place.  Friends from Best Buddies and Special Olympics, Bible study, Miracle League, former classmates, everyone!  It’s Night to Shine – a prom for people with special needs 16 years and older put on by the Tim Tebow Foundation.  It happens all over the world on the same night.  There are currently three happening around town.  It starts with fun pre-prom activities like hair, makeup and nails for the girls and shoe shines for the guys.  There’s karaoke to sing or watch while they wait for their limo ride.  Everyone gets a crown.  Cory attends at a church.  The limo takes them from the church to the community center across the street.  The participants exit the limo to a red carpet complete with volunteers acting like paparazzi cheering for the prom kings and queens.  Once they’re in the venue but before they enter the ballroom, they line up to be announced by local celebrities.  “…and now, announcing King Cory escorted by [his buddy for the evening].”  In the ballroom they are served dinner and get to dance.  Tim Tebow joins via video and tells them all how precious and special they are and that they are princes and princesses of the One True King.  Everyone cheers and they get back to dancing.  You can see why this is Cory’s favorite night of the year.  It’s filled with everything he loves most – friends, music and dancing.  This magical night is this Friday and we have one very excited guy on our hands.  We have been talking for weeks about which friends he’ll get to see there, what he’ll be wearing (of course it’ll be his purple dress shirt with his black suit - but which purple tie?) and what they will serve for dinner.

Last year it is about a week before the big night.  Sometime around 3am I shoot straight up in bed and think, “I haven’t received a phone call about Night to Shine.  I better make sure Cory’s on the list (it fills up fast and there is usually a long wait list).  I reach out to the lead coordinator first thing the next morning and my worst fears are realized.  Cory is not on the list.  She kindly informs me there is an extensive wait list and there is no way they can get him in.  I check the other venues and they are in the same situation.  Cory will not be going to Night to Shine.  My heart sinks.  I feel physically ill.  I cry for a whole day.  Every time I think about it (and having to tell him) I tear up.  How could this have happened?  I must have gotten distracted mid-registration and it never completed.

Ok, I need to come up with a plan.  I reach out to the other moms I know of special needs kiddos to see if anyone else’s child won’t be going.  We could have our own dance party in Cory’s new man cave.  We can string lights and get a mirror ball, serve a nice dinner complete with the requisite cupcakes.  The emails started coming back.  Everyone’s child is going.  We are the only ones.  More tears. What else is there that is super special for Cory that might work?  I know.  The Mall of America!  We’ll take the day off from work and go to Minneapolis for the day.  He can ride rides and we’ll come home late that night. I can sell that!  A glimmer of hope.

Cory still loves Barney the Dinosaur.  He watches it on YouTube whenever he gets a chance.  In one of his favorite episodes a newer character named Riff (BJ’s cousin, I think) makes a big mistake so of course they sing about it.  The lyric is “oh, oh oh what a big mistake.” Cory gets in the car after work.  I have to tell him when we’re both in the car so he can’t see my tears.  I say, “Cory, remember the Barney song ‘What a big mistake?’  Well I made a big mistake.”  Cory responds, “What do you mean, Mom?”  I answer, “I didn’t get you registered for Night to Shine.”  Cory:  “So I can’t go?”  Me “Correct.  I’m so sorry buddy.  But I have an idea.  Do you know what it means to play hooky?”  Cory, “No.  What does that mean?”  Me, “Well, we both take the day off of our jobs and go do something fun.  I thought we could drive to Minnesota and go to the Mall of America for the day.”  Cory sits there for a minute and then says, “I would rather go to Night to Shine.”  More tears roll down my face.  “I know buddy but I didn’t get you registered so you can’t go.”  Cory, “It was canceled?”  Me, “No, it’s still happening but you don’t get to go.”  Cory, “Oh okay.”  That’s it.  He’s not mad. He doesn’t even appear to be sad.  I jump right to, “So, what ride do you think you want to ride first?” Cory responds enthusiastically with “the Pepsi Orange Streak roller coaster!”  I fire back with and what about lunch?  Cory, “Johnny Rockets!” and we talk about our planned trip.  Once again, Cory shows me a little glimpse of heaven.  He receives the news without an ounce of disappointment, anger or frustration.  This kid reflects yet another facet of how God loves and is forever full of grace.

Epilogue (can I do that in a blog?) – The trip to Minnesota was not all sunshine and roses.  Once we cross the state line, the roads turn into glazed ice.  About an hour into the state (what seems like only 10 miles) I call Mike nearly in tears. (I’m not a wimp about winter driving.  I grew up in Minnesota and have driven back and forth through a lot of bad weather but this was BAD!) “The roads are terrible.  I can’t imagine turning back and doing them again but at the rate we’re going it is going to take several more hours to get to the mall!”  Mike talks me off the ledge so I can press on.  Although we’ve brought nothing to spend the night, I decide to stay at my brother’s and brave the roads home the next day.  We once again try to make it an adventure and go jammie and tooth brush shopping while at the mall.  Oh and the Pepsi Orange Streak roller coaster is closed.  Without any hesitation, we walk right over to the Avatar Air Bender and get in line.  Cory has fun and is an awesome sport.  He is no end of blessings and we do not, for one minute, take that for granted.

As I mentioned earlier, this Friday is Night to Shine.  Way back during the summer I make sure to get the sign up date on my calendar the minute it is announced.  Once registration opens, I pounce.  When Cory receives his golden ticket to get in, it has 15 printed on it – I’m guessing that indicates I am the 15th person to register – not going to miss it this year!  If you follow me on Facebook, I promise to post pictures!

Be Kind. Always.

One of the store managers approaches Cory and his job coach and says, “Can I pull you two away from the line for a minute?” The job coach’s heart starts to race. Uh Oh. Are we in trouble? In a stern tone, the store manager says, “I just got off the phone with a customer.” The job coach starts to feel herself get flushed. Her mind is racing. What did I miss? Cory hasn’t been away from my side. What could he have done that could have possibly caused someone to take offense? The store manager continues, “She said she was having a bad day but after interacting with Cory, it completely turned her day around and she is now in the best mood.” Oh Whew! With a twinkle in his eye, the store manager says, “I just wanted to mess with you a little. Here Cory. This is a coupon for a free meal in the restaurant. Way to go buddy.” He shakes Cory’s hand and walks away.

When Kellen and Cory were little, there was a little grocery store down the street that had a small diner inside. Mike and the boys would frequently go there for dinner on my Bible Study nights. One time when they were eating dinner, an elderly gentleman approached them as he was leaving and told them it was really fun to watch them interact with each other. He told Kellen he was a good big brother and he told Cory he was a good boy. He proceeded to give each of them a one dollar bill. Because Cory has never cared about spending money, Mike taped his dollar to the outside of one of the kitchen cupboards and told the boys it was to serve as a reminder that we never know when people see what we’re doing so it’s important to always let our light shine.

We’ve all seen the meme “You never know what someone is going through, be kind” or “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.” They have become memes because they are true. I don’t know about you but I work so hard to try to remember the importance of seeing people, not just rushing from one thing to the next but it is an inherent part of who Cory is. There is no intentionality in how he interacts with people, he just naturally does what we aspire to do. He’ll ask a woman he’s never met that he’s bagging groceries for if he can give her a hug. It gives his job coaches and the cashiers pause and then the woman responds with, “How did you know I needed that today?” You’ll hear me say this a lot but this is one of the reasons I sincerely believe our spirits will look a lot more like Cory’s in heaven than any “typical” person we will ever meet.

Please comment below if you have a story of how the special needs person in your life has blessed you or if you’ve been blessed in an interaction yourself.

Witnessing a miracle

I prepared this story in a Faith Storytellers Workshop. I highly encourage taking the class—everyone has a story, and the instructors will help you share it well!

It is finally here! Our favorite week of the year – Family Camp! We have attended Okoboji Lutheran Bible camp every year for many years as our family vacation. It’s our favorite because it’s the first vacation we were ever able to take that wasn’t visiting family or friends. 

Our son Cory has special needs that just made it too cumbersome and difficult to stay in a hotel, so our vacation options were limited until dear friends told us about family camp. 

We love that we get to hang out with our church friends, they have awesome counselors to love on our kids (and actually, the whole family) and we’ve made new friends over the years.

This year we will be there Cory’s birthday week and it will be even more special because his birthday falls on the Wednesday “free day” when we get to go to Arnold’s Park. 

This means he gets to go to an amusement park with the counselors and lots and lots of friends on his actual birthday!

A shift in plans

So it’s Tuesday, the night before his birthday, and Cory starts vomiting. In the past, this was an indication that he was severely constipated, and the vomiting never stopped without a trip to the ER and oftentimes ended up with a hospital admission. 

My heart sank. 

After several bouts of vomiting, Cory says he wants to sleep with me. This is unusual because Dad is always his “go to.” 

Mike is so much better with medical issues. I get too caught up in what’s happening to focus on Cory but Mike zeroes in on him and sings to him, plays with him and finds creative ways to distract him. For some reason, this time, Cory chooses me. 

I was delighted and yet slightly perplexed. As we are laying down hoping to get to go back to sleep, I get this overwhelming urge to pray for God to heal Cory and an even stronger urge that God absolutely can. 

The nudge to pray

I place my hand on Cory’s tummy and my conversation with God goes something like this: 

“Dear God. I KNOW you can heal Cory. As you well know, tomorrow is his birthday and he is so looking forward to celebrating with his camp and church friends, but I trust you. 

If there is someone at the hospital who needs to meet Cory and be blessed by him, I surrender that to you.

Just like Shadrach, Meshach and Abednego KNEW that you could save them from the fiery furnace, I KNOW you can heal Cory and in the same way they would continue to worship you. 

Even if you didn’t, I will trust you, worship you and share your awesomeness with others even if you choose not to heal Cory but if you do, I will share with the entire camp what you have done.”

Resting in truth

Cory has been sick like this many time before and many more times since, but I had never felt the confidence I feel that night. I know that I know that I know that God absolutely can heal Cory. 

You know how they say that you only have to have a mustard seed of faith to move mountains? Well, I don’t even have a mustard seed of doubt that God can heal Cory.

As I look back now, I see that in that moment, I was full of God’s Holy Spirit! There was no room for me, my doubt or any of my thoughts that could possibly detract from my belief. the blessing of that kind of confidence is something I will cherish forever.

Cory settles in and his breathing moves into that beautiful calming rhythm of sleep. As I watch him and start to soak in this peace, I too drift off.

Waking up

We get a great night’s sleep. We wake up and I realize the vomiting stopped when I prayed. God heard me! He reached down, touched Cory and healed him! 

OH…MY…GOODNESS! 

This really happened! 

I was overjoyed! 

Cory goes on to eat the same breakfast he’s eaten every day of his life and has an awesome birthday celebration. This the only time Cory’s vomiting ended without meds or medical intervention.

Sharing God’s story 

The problem is that now I have to keep my end of the bargain. I am in a family of people who LOVE, LOVE, LOVE the stage. I am not one of them. I love watching every one of them on stage but I have never been a fan of a spotlight. 

In addition, I can talk about God without crying, I can talk about Cory without crying but if I have to talk about both of them, I am a “hot mess,” to quote my southern friends. 

So on Wednesday morning, I approach the pastor who was the speaker for the week and tell him I need a couple of minutes to share our story with the camp. I do it, it is not pretty but God got the glory.

Miracles do happen

I want you to know that the God of miracles found in the bible is still performing them today. 

We are blessed to be in a family that has seen many. I could spend the rest of the night sharing them all with you and hope to one day publish a book because they tell such a great God story. The miracles we experienced prior to this one evolved over time. 

Cory was never supposed to talk but at the age of 5 ½ he and God decided it was time and he started talking (as a fun aside, his first full sentence was “I’m happy today.”). 

He had a heart condition where the best we could ever hope for was for it to plateau. It got better and better until there is no evidence his heart has been anything but strong and awesome. 

There are even more but they all took time – years to see the end result. 

This one happened in a moment. So just like Jesus healed people over time and in a moment in the Bible, they (God the Father, God the Son and God the Holy Spirit) still do. 

I know that I know that I know because I am a witness and therefore, I want to witness.

Have a faith story to tell? Faith Storytellers is an incredible resource: Download the faith storytelling guide, which will walk you through the process and structure of writing a faith story, and then submit your faith story to share on their website.

Why not?

“What are your dreams for your child(ren)?” 

I was blessed to nanny for a mom who had four kids kids, all 4 and under, with the youngest having Down Syndrome.  She is an amazing woman and I learned so much from her (I’m confident, Cory got a bigger head start because of all she taught me).  She would counsel families just learning they would be raising a child with Downs.  She would start with the question, “What are your dreams for your child(ren)?” 

The most frequent answer is probably, “I want them to be happy.”  Others could be, “I would love to see them get married, have a happy marriage, a fulfilling career and children.” She then would ask, “Aside from having children, why would the dream have to change?” She would give them time to sit and think about it and then they would talk about all of the possibilities and seeds of hope would be planted.

 So what is it for you?  When you first find out you are pregnant or if you’re thinking about having children someday, where does your mind go?  What if it’s a boy?  What if it’s a girl? Why can’t a child with special needs have those same dreams?  To be perfectly honest, I know people with special needs doing a better job than some who are neurotypical.

What is it for me?  I had the advantage of pondering this question from the time I was 16 until conceiving my first child at 30 and my answers became, I want them to know Jesus and to make him known and I want them to put more into the world than they take out of it. I believe that if they do these things, happiness will follow. I am not an advocate for the pursuit of happiness because the world can be so false in telling you how to obtain it. I believe happiness is something we receive, not something we acquire.

The phone...

Oh the dreaded phone.  We love it, we hate it, we can’t live without it.  It’s time to get him his very own but YIKES!  We make the leap and do it because we will be leaving him home alone for short periods (that’s a whole other blog!). 

“Cory: Hey Siri. Call ‘Kellen is the best brother’ (this is how he shows up in his contacts). Siri: Okay. Calling ‘Kellen is the best brother.’”

The problems present themselves quickly – text after text after text.  Phone call upon phone call upon phone call.  How are we going to manage this?!?! 

Cory has always loved the phone

I inquire among my friends – “does anyone know someone who can create an app?”  We have got to figure out how to reign this in.  An ideal app would restrict texting so it would have to be one for one – send one, receive one not send 50, receive one, send 50 more.

Phone calls would have the same restriction.  It would also prevent communicating with anyone who is not in the contacts. We find someone who can build apps but they tell us that Apple won’t allow an app with those kinds of restrictions.  The cell phone providers have their own way but it doesn’t have the functionality we’re wanting.

Eventually I figure out that if we don’t give Cory the code to unlock his phone, it will do most of what we want.  Mike and I put ourselves as contacts in the Emergency section of his phone so he can call us without unlocking his phone. 

If someone calls him or texts him, he can respond one time.  He did figure out that he could use Siri to bypass the locked phone so we had to disable voice commands. We make sure his caregivers have the code so the phone can be unlocked so he can access apps when it’s appropriate.

He can’t initiate a call or text but that’s not necessarily a bad thing. He just asks if he can call or text someone and if the timing works, we unlock the phone, let him call or text and then make sure he locks it again.  Then he gets to wait until they call or text back.  This is working for us – for now.

If you have found anything that works for you, please share in the comments.

When people are unkind

“Why do people even have to be mean?”

Cory’s Job Coach asked, “What do you do when someone is unkind?”  Her question took me by surprise. 

My response was, “It happens so rarely, I’m not even sure how to respond. Tell me more.”  She went on to relate how this customer came through the line where Cory was bagging groceries.  She was in a big hurry and was very rude.  She needed help getting her groceries to the car so Cory and the Job Coach took them out for her. 

As Cory is taking a bag out of the cart, he knocks the cans that are hanging over the side of the cart onto the pavement.  One of the cans gets dinged up pretty well so the Job Coach offers to replace it.  The woman is not happy and says, “I’m in a hurry, how long is this going to take?” 

After going back and forth about it, Cory takes the damaged cans to customer service while the Job Coach goes to get a new one.  Unfortunately, there was only one package left and it was also damaged so it took longer than the Job Coach had hoped.  The customer came into the store, now even more unhappy than before. 

After getting everything worked out, she makes the comment, “The management here has really hired poorly this time.”  This about brought our dear Job Coach to tears.  She was frustrated, and very hurt by this woman’s comment.  You can about imagine the possible comebacks floating around in her head.  Thankfully, she didn’t share any of them. 

My response is that when things like this happen – and again, they are rare – it is more of a reflection on the unhappy person than on anything Cory does or who he is.  When people like this cross our path, I tend to feel pity for them and I always say a prayer for them.  Sometimes, they make me very angry and it can be hard to let it go but I make the decision that they will not rob me of my joy. 

When they walk away, we’re done with them and we get to get back to experiencing Cory’s joy and the many people who receive it from him.  “That woman” will carry around her anger and meanness and will not get away from it.  I once heard it said that broken people have sharp edges and I believe it to be true. 

That same day, I called a sandwich shop to order a dinner for Cory because we had a busy night ahead and I wanted to pick it up before I got him from work.  When I placed the order, the young man on the other end said, “Is this for the guy who works at the grocery store down the street?” (Cory does have a rather unusual order.) I said if he meant, Cory, yes it is.  He said, “I just love it when he comes in here, he always makes my day. I’ve seen him over at his job too and he is always so happy and friendly. I got a new job so I won’t be working here much longer and I’m really going to miss seeing him.  I’ll just have to make sure I go see him when he’s working so I can say hi and get some of his joy.” 

The very next day, another person made a point of coming over to me to tell me how much she loves going to see Cory when he’s working because he’s just so happy and friendly.  Yet another person told me about how Cory had “pounced” (my word, not theirs) on them from behind and how his enthusiasm and greeting made their day.  These are three examples in less than a 24 hour span.  That grumpy lady is honestly the only one I can remember happening this year. I’m sure there are others but I release them and choose to think about the positive comments.