I know I’ve talked a lot in this blog about how hard this year has been, and there have been many times that I felt helpless and that things were out of my control.
Last night at a family gathering for my nephew Mark’s birthday, James was not wanting to participate. I pushed him and pushed him to be a part of the party, to sit at the table and sing Happy Birthday with his cousins Grady and Emily, and show my family how cute he can be!! He responded by crying and gagging to the point of throwing up. Couldn’t have been more opposite of cute. This alone is enough to make me feel horrible. But to realize the next day, that he truly was starting to be sick, makes me feel even worse. But I had no way of knowing that this “bug” had entered his system. I thought he was just being a crabby ten-year-old
boy and I wanted him to be “present” for the celebration. I demanded he be present.
It’s such a fine line between challenging him out of his comfort zone or not. But as I just typed that sentence I realize that when the motivation is about “me” I’ve gone too far. When will I finally get that almost everything is not about me?
Sometime around 2:30am, James woke and seemed happy. He sang songs and cuddled. But around 7am, things took a drastic turn. The fever arrived and by the way he is swallowing, I’m guessing a horrible sore throat. I don’t know. But he and Elmo were out for the count
He fell back to sleep this morning and I laid next to him and apologized. I apologized for pushing him yesterday. And I said that
I told him that I know that his presence on this planet is bigger than participating in a birthday dinner. And that it just took me a day to remember that if singing Happy Birthday to Uncle Mark makes him feel uncomfortable, then maybe that’s okay. Because the truth is that James is thankful for Uncle Mark every single minute of every single day and doesn’t need a cake to remind him to be.
We also had a long talk about medicine and how much it would help him, if he would only take it. Sigh So here’s a Christmas puzzle for you…. James eats five foods when he’s with me; yogurt, cheese sticks, pancakes, noodles and Auntie Kiki’s toast. Occasionally a fruit cup or applesauce. And of course, lots of milk.
(I’m confident also that is someone would manufacture odorless tasteless med’s they would make a fortune. At least off us!)
Once again, it comes down to acceptance of what is, of WHO James is. And today he is sick. So, we will cuddle and sleep and pray and read Cat In The Hat books and try to stay away from the dozen’s and dozen’s of cookies on Auntie Kiki’s table. (Okay, I may have already failed at that goal and it’s only 10:15am.)
I was listening to a great book last week called “The Obstacle IS the way” and heard this;
So today I embrace my failures. I’ll embrace going sideways and I’ll be thankful for James’ illness, only because it may be the one thing and the only way that helps me approach this Christmas season reminded of what is truly important.
Happy Birthday Uncle Mark. We love you every day.
I always joke about selling tickets to this truly entertaining event. Jim is on his knees, holding James down in the chair. I am standing holding James’ head, so that Cassie can feverously cut while James squirms and squirms, trying desperately to get free. The good news is, Cassie is the fastest hair stylist on the planet. Seven minutes later, James is free. The bad news is, it only takes about six minutes for Jim’s knees to be bruised and my heart.
When I got home, I turn on the news to see an update on the Chattanooga bus crash. I can still hardly watch. My heart breaks for those parents who lost their children and the other kids who survived, but are now emotionally wounded. And then the next story was about some Tweet our President-elect posted, and I screamed at the TV and God. “I just don’t get so many things! Why do kids have to die?
The holidays can be tough. A friend texted that she was sad, missing a loved one, and another friend said she was having a kitchen sink plumbing problem on the biggest cooking day of the year! And another was dreading going home because she would be forced to be in the same room with an estranged brother.
My “go to” response to them (and anyone struggling) has always been, “Well, look at it this way, no one is dead or injured, and if this Thanksgiving sucks – wait a year – I promise you’ll get another shot at it in 364 days.” But children did die and I have friends losing the battle with Cancer, and so many families with gather trying to be kind when all they want to do is poke someone’s eye-out with a fork over something that happened twenty-years ago! Thanksgiving does come every year, but what if it’s not much better than last year?” And the list goes on and on and on. So, I got to thinking this morning,
You breathe in and out and you find the smallest tiniest silliest thing to be grateful for. Are you warm? Do you have food to eat? Do you have shoes on your feet? Start there! Start with the extremely obvious and say thank you, even if you don’t feel it. Turn your heart and mind away from the anger and sadness and choose gratitude, instead of screaming at the TV.
So today I say quietly with just enough breath,
I was telling a friend yesterday about my year, “Yeah, it’s been a little rough, my one brother had a stroke, the other brother had a cranial brain surgery, the other brother passed away, I found out that I myself have a brain aneurism, (contrary to my post that said I had nothing to worry about), plus I went through a divorce and moved into a new (much smaller) place. But, hey, I’m still standing.”
For those of you who may be reading a blog of mine for the first time, you should know that James is a ten-year-old happy little boy who has Down syndrome and Autism.
Every morning, on the way into school, James eats three pancakes, warmed in the microwave, on a paper towel. Not four, not two. No butter or syrup. And most days he eats them without incident. But occasionally, like today, he makes a mess.
He will stuff the pancake in his mouth, chew it, half way swallow it, and then regurgitate it back into his mouth. Really? I don’t know why he does this. Before I started writing this blog I placed a call to the Down syndrome clinic and the autism clinic hoping they could provide answers. Until they call back, I’ll keep writing.
I made it clear to James (so I thought) that if he made a mess with his pancakes he would not get to play with my iPhone, which is his most favorite thing to do. (You may be saying, “then just don’t give him the pancakes.” Which I know sounds like a great solution. But I would like you to be here tomorrow when he opens the door and there are no pancakes on the seat. There will be an eruption of emotion unlike I’m sure you’ve never experienced first-hand.)
James is quietly eating when I hear him say, “Moon!” I said, “No, that’s the sun buddy.” He loves the moon. And then, a few miles down the road, I hear gagging from the back seat.
Chewed pancake coming out of each nostril, which of course he tries to eat again. I am yelling, reaching back with a Wet One and trying not to swerve in order to catch it all. A half-box of Wet Ones later and it is over.
I walk James into school and he is covered in pancake. Pants, shirt, jacket, hair. I want to shout out to all the other parents, “I promise these are clean clothes and I truly did bath him last night.”
After the hand off to his aide, Ms. Bidini, I get in my car and sob all the way home. I’m mad.
I’m mad at my inability to handle this. I’m mad that my brother had to die a horrible death. I’m mad that the holidays are approaching and I might not know how to handle it. I’m still mad that my mom had to die when she was only fifty-six, an age I’m quickly approaching.
I round the bend on I-440 to see the moon. Still shining in the morning light. The sun is to my left, blinding the traffic and the moon is to my right. In between I see a billboard for St. Jude’s. An adorable bald little boy is fighting for his life. Then, at my freeway exit, there is a homeless family. Bundled up because today it’s cold.
I am sitting on my couch, in front of a fire. Waiting
for my new iPhone to ring bringing help to solve a pancake snot problem. Gratitude continues to heal.
Like most everyone on Facebook, I have spent the last few days reading posts, post-election. I have never been more relieved that I call myself “the least political person on the planet”.
Change is hard. I’ve been saying that all year. And it might take months and months for all that has happened to me this year (and what is happening in our country) to play itself out and make sense. Yesterday, I told a friend who is struggling,
And so we keep running, or walking, or limping if that’s all you can do, but you keep going. And you keep focused on the things you CAN control, like your attitude, your smile and how much sugar you eat. We get out of bed and instead of being crabby and glued to the television, you go for a walk in the woods, or call an old friend who needs to know you care.
All he really cares about is that he gets to watch Dora on his IPad, eat pancakes for dinner and take his sock monkey to a restaurant. And trust me, these are truly important things. So it’s my job to make sure I can give him that. I make sure the iPad is charged. I make sure Publix keeps his brand of pancakes stocked. And we visit California Pizza Kitchen at least once a week – so he can see all his friends that work there. I do what I can.
I spent the last few weeks producing the CMA Red Carpet Show for DirecTV. It was crazy and tiring and a blast…. like most TV gigs. I think someone should produce a behind the scenes documentary of what is going on when celebrities are walking down a red carpet, looking beautiful and gorgeous and calm, because there are at least twenty people in a TV truck right outside who look like they just survived a tornado, or the 2016 election. Kind of the same. Pure chaos at best.
I was putting James to bed one night when the moon lit up his tiny room and filled it with light, making it difficult for him to fall asleep. (No time to put curtains up yet!) We said our prayers. “Jesus, thank you for a fun day. God bless Mommy, Daddy, Grandma, Racheal, Uncle Lenny, Auntie Kiki, and then whomever James happened to see that day… Auntie Sandy, Dee-dee, Chris etc.” BAY-MEN. (Amen). And then James said, “Sing?”. I asked, “You want mommy to sing? What do you want to sing?” “Farm” he said. “Okay, let’s sing. Old McDonald had a farm, E-I-E-I-O. And on that farm he had a….” And I wait and James says, “Pig.” Of course there’s a pig on the farm. And a horse and a cow and a kick-in (chicken).
As we sang, I found some peace. Peace about the election and peace about crazy TV gigs. In James’ mind, no matter who is president, Old McDonald will still have a farm, and there will always be a pig on that farm.
To KNOW and TRUST that the way things are happening is the way they are supposed to be happening and that we are not in control – HE is! And most importantly, that our job is to stay present in this day and keep our hands and minds and hearts busy doing what we can control. Bake someone cookies. Go for a walk. Meditate. Show love
Oh, and James would like you to know that thanking God for the people in your life is that last thing you should do at the end of the hardest of days. Try it.
For months now people have been asking me, “How is James handling the divorce?” And I would respond, “I think he’s doing really great, but I’m not sure if I would even know.” Well… this morning, I know. James had a total and complete melt do
wn going into school. Which means I had a total and complete melt down going into school
My heart broke for him. And me. And I did the only thing that I knew would help, (besides the obvious of eating a dozen of donuts) I reached out to a friend. And they texted me this,
I have tried my best to explain the new condo and the new schedule and the new bedroom. I have tried to make sure that all his Elmo’s were nearby and that his iPad was always fully charged. But the bottom line is my friends words are correct… change is hard, for everybody.
I know that he will adjust in time. And he will get used to all the new things. And so will I. But today is one of those icky days. Where you just wish things weren’t as they are. You just wish you were in your old bed, your old house, surrounded by the familiar. When you are drawn out of your comfort zone, God and the universe are asking you to trust and believe like you never have before.
This week I got to speak for Regions Bank and their United Way Kick-off Drive. I got to share my story of survival. I met other people who are dealing with some really tough stuff. And each time I talk about the journey, I am reminded that is in fact… a journey.
I found this quote by Mary Tyler Moore.
Pain nourishes your courage. I love that thought. I love the thought that what I am feeling right now is actually nourishing me in a strange way.
My prayer today for myself and for James and for you (if you find yourself in the midst of change), is that with every ache we remember that we really are getting stronger.
Yesterday, in the middle of the afternoon, I stood in the driveway, surrounded by boxes and memories and covered in dirt and fear, when two women approached me. They were both smiling, as if they were long lost friends. But I couldn’t place them. For a moment I thought maybe they had seen all the stuff in the yard and thought it was a garage sale. And then the girl with the strawberry blonde hair said, “Are you Lynn Rink?” “Yes”, I said, confused. (Slightly worried that I was being served some kind of legal papers!) Then she said,
She handed me an envelope stuffed and over flowing with cash. Twenty’s and ten’s and singles. I was so confused. I tried to speak, but before I could, the woman with the dark hair hugged me and said, “Have an awesome blessed day.” I burst into tears and they both turned and walked away. I stood there shaking and crying. “Wait, what just happened,” I said out loud. And just like that, they were gone. Inside the envelope was hundreds of dollars and a beautiful necklace of the tree of life.
This random act of kindness was something I have never personally experienced before. Or I should say, before this life transition. I wish I could tell you all the many stories and details of God’s truly tangible love being displayed to me by others during this time, but many have asked to remain anonymous. But when I needed exactly $500, someone who didn’t know that specific need wrote me a check for that exact amount. When I wasn’t sure how I was going to get groceries, a gift card appeared in my mailbox. Over and over and time and time again, people have shown up to carry boxes, or take me to lunch, or answer the phone when I needed to cry. I have truly never felt so held and supported. I have tried to stay present through all of this and to stay grateful. But because I am a flawed human, somehow it’s easy to miss God in them. To call them coincidence or whatever. So the gift from 12 Ordinary Woman for me was God screaming loudly,
When I had a moment, I researched them on the web. And here’s what it said….
It all started with a group of women from Franklin, Tennessee in April of 2009…It was our heart’s desire to give the gift of HOPE to other women. Now 12 Ordinary Women has grown in to so much more than we could have ever imagined, groups have formed all over the country helping other women and giving the gift of HOPE. There are now men who come together to help other men, they call themselves 12 Average Joes. Families are coming together to teach their children the gift of generosity, they call themselves 12 Ordinary Families.
Who would have known that 12 ordinary women of different ages, education, and experiences could come together once a month to quietly make a difference in another woman’s life and end up starting a revolution of generosity and hope. Our hope is that others across the country will continue to catch the vision for starting their own groups and begin the process of helping others, quietly and anonymously.
I LOVE everything about this, and as I continue to put together The James Rink Foundation, I have been even more inspired to help people in such an awesome way as this organization has chosen.
As I sit and write this morning, in the red chair, surrounded by boxes that need unpacked, with aching muscles, a splinter the size of a toothpick lodged in my finger and the sound of Elmo blaring from James’ IPad, I am somehow at peace. Because I know that I AM is with me. But this is not about being uber spiritual, (believe me, you should have heard the thoughts in my head yesterday and the words that came out of my mouth)
To the woman who filled the envelope, who maybe gave their last twenty dollars, please know that my heart is full of thanks and gratitude for you. You were the voice of God that I needed to hear.
Today, I will start unpacking… box by box… because that’s the only way to keep moving. Just like staying sober, or not acting codependent, or not eating sugar – sometimes it’s one hour, or one day, or one box at a time, and we continue to heal and move towards the goal. (Looking at the big picture of what needs to be done is so daunting that all I want to do is go to Krispie Kreme) but instead I will start with just one box…
AND THEN maybe head to Krispie Kreme.
From the backstage door I could hear the screams and feel the energy. It was Saturday night and at least two thousand people filled the Biergarten at the Mt. Angel Oktoberfest in Oregon, ready to dance and drink and celebrate. And for me, it turned out to be more than just another gig… it was a homecoming of the heart.
In the mid 2000’s, for four years in a row, I was the headlining act for the Mt. Angel Oktoberfest. Myself, along with my band The Boxhounds, rocked the stage by playing everything from traditional polkas to cover tunes done as polkas and of course the expected chicken dance. But in 2008, for reasons that I did not understand, I was not asked back. It made no sense to me at the time and I was hurt and angry and confused. But that’s how it goes sometimes.
At that time in my career, my son James was just two-years-old. He was born with Down syndrome and later diagnosed with autism, and the new life I found myself in shook me to my core. I had an extremely difficult time coming to grips with his disability. Depression moved in and for years I felt as if this black cloud of darkness engulfed me. That made it almost impossible for me to entertain at the level and standard that I and others expected. It got harder and harder to be on stage. Especially when I would see someone on the dance floor with a disability. The only way I could get through was just to ignore them. I know. That sentence was hard to write. But it is true.
I am not proud of that – but my fear was running the show. I was shallow and self-absorbed and living in darkness. But the writer Barbara Taylor Brown says, “New life starts in the dark. Whether it is a seed in the ground, a baby in the womb, or Jesus in the tomb, it starts in the dark.” And so it was for me, that from that darkness, a whole new life was birthed.
Not getting called back to play Mt. Angel made deciding to get off the road a tiny bit easier. And once I did, I had the time to put my energy where it needed to be.
I felt like I was being pulled and pushed and molded, but years later I knew that in many ways I was better. Not perfect, but better.
So when I got the call this year asking me if I would return to Mt. Angel I was both excited and nervous. I feared so many things; could I find a band that would measure up to how I sounded the last time I performed? Would the eight years of wrinkles make me feel and look old? Could my body even handle so much playing? (And let’s not even talk about the ten pounds!) But I said yes to the call, even with so many questions, because I knew that I wanted to be back. I needed to be back.
And so after eight long years away, I was back. And as I walked onto the stage Saturday night with a brand new band, and as we hit the first note of “Mama’s Got a Squeeze Box”, I was overcome with gratitude. There are moments as an artist that the stars align; the audience is engaged, the band is in sync, and I wore the right shoes. I thought, “I don’t’ think it can get any better than this moment right now!”
But then… I saw her. Megan. An adorable red-head thirteen-year-old girl in the middle of the dance floor, who had Down syndrome. She was dressed in a German dirndl, singing at the top of her lungs to our music. But this time – this time – I didn’t look away. Instead, I couldn’t help but watch her, pulled in by her smile. By the end of the first song, I found myself holding back huge tears…of joy. I wanted to yell out to her, “Dance Megan, dance! Make a scene! Show the world who you are and why you are here!” I watched her do the best version of the chicken dance I had ever seen and finally, I just couldn’t help myself, I grabbed the microphone and to that crowd of two-thousand people I said, “Hey Y’all, I know we are all here to drink and party, but I just got to take a minute and say hello and thank this beautiful girl on the dance floor. You see, I have a little boy at home who also has Down syndrome and they are the most precious people on this planet! Megan – thank you for reminding us all what life is all about!” The audience let out a huge cheer and she waved like she was just named homecoming queen.
Thank you Megan for reminding me that I made it out of the darkness. To the board of the Mt. Angel Oktoberfest, thank you for NOT hiring me years ago and thank you for bring me back. To the guys that worked their asses off to learn my songs and entertain along side of me; Jason Nix, Duran Crone and Drew Lambert – you are more important and appreciated that you will ever know. To Jim Hoke, who owns the Mt. Angel Sausage Company – your constant belief in m helped bring me back!
Sometimes, God and the universe and the day surprise us. We don’t get what we dreaded or worried about. The check doesn’t bounce, the stain comes out of your favorite shirt, the rain holds off just long enough, or your special needs child does something so off the charts you can’t help but know that God said hi.
New video blog on painting my new place. Sadly, James went from bad to better to worse. If you listen closely at the end, you can hear him crying in the background. So I spent the day holding him while Mike painted. Stay tuned for the end result! Xo