Jason Mraz and the Battle Hymn of the Hospital Mom

So I made an effort to end the summer on an absolute personal high note by driving a ridiculous number of hours to go see one of my favorite singer/performers: Mr. Jason Mraz.

 After months of petitioning friends and pestering pals to go to the concert in Detroit from Traverse City, I found a taker. Remember Bernie's friend, Hattie Jo? Well,  Hattie Jo's mom, Jen, and I made the trek. Another trip to the Detroit area? In the summer?  Most in the north find that a preposterous idea. After all, we do live in the most beautiful place in America and to leave to go downstate is somewhat blasphemous, especially if you're not going to visit family or attend a majorly personal event. Didn't matter.

We were going. And while our kiddos find great satisfaction in hanging out together, so do we.

So what the heck does a Jason Mraz concert have to do with Bernie and life with a kid with Down syndrome and all of the other subsequent issues? Quite a bit actually and not really at all what I was thinking in initially making plans for the trip. First of all, moms who have kids with Down syndrome have a great outlook and get out to do some pretty cool things. We have friends everywhere. Worlds again ended up colliding as high school pals, Black River pals, Traverse City pals, new friends, and even a Mott employee or two came together to listen to the joyful musical wisdom of Mr. Mraz in Detroit at the end of August.

It's no secret amongst parents of kids with Down syndrome that, contrary to the name itself, these kiddos have the propensity to help us find incredible joy in the world beyond that of our more typical children once you get over the shock that so many seem to get stuck in. They are immensely capable of reminding us of the simple, small stuff that really matters.

And the music of Jason Mraz is in the same light. His music is positive, well written, composed to include a range of styles and vocal skills, sometimes has a shock or two to make you think or giggle, and leaves you with your toes tapping and your voice singing along.  You leave at the end of the concert wondering what the heck could really have been wrong in the first place and with a greater appreciation of everyone and everything around you.  If you're not smiling when you leave, then you need to just go see him or listen to him more often. Kind of reminds me of Bernie. As my dad says, "If she can't make you smile and melt your heart, then there's something wrong with you." I have to say I agree...

For those of you who are not super Mraz fans like Jen and I, this tour was to celebrate Jason's lastest "Love is a Four Letter Word" album.  We even bought Jason a Michigan Love t-shirt to give to him at the concert (click here for the M-22 store to order. You will not see these shirts on sale online yet for some reason, but maybe this article in the Wall Street Journal about them may help you know why). Thanks to the guys at the M-22 store for the discount and enthusiasm for our plan to give Jason this shirt. We both agreed to put on the capes of our less inhibited and bolder inner 18-year-olds and come hell or high water, we were going to get this shirt to him on stage.

The couple who took our picture with the shirt before the concert seemed to think we were a little crazy and disillusioned in thinking we were going to hand deliver this shirt to him during the show. The security guards tried to tell us another way to get the shirt to him, but that really was not going to work.  We drove a total of 500 miles to see this show. They just didn't understand.

And dance. Boy did we dance. We seemed to have super springs in our feet that even the people who were front row and center stage did not possess.  I think Jason Mraz appreciated our super spirit for he shot us a few glances of gratitude immediately into the first songs when everyone else just kind of stood there waiting for the "big hits".

He plays center stage and stage left. About 3/4 of the way through the show he approaches stage right with a chair. He began a little dialog about how the shape of the state of Michigan is so awesome because it's like the "high five of America".  He sat down to play a nice mellow tune. This was the opportunity to get that shirt on stage if there ever was one. The security guard denied me access around my row of seats to get closer and told me I was NOT going to give Jason the shirt in my hands. Just another person who did not understand. On to Plan C.

The ladies in the one row blocking us from being immediately in front of Jason agree to let us climb over their seats. Remember the inner 18-year-olds? One of these nice ladies told us that she just bought a bumper sticker with that "Michigan Love" logo the weekend before. We had her vote. Onward and over!

The song was in the last few lines and I got close enough to launch the shirt on the floor right in front of his guitar. Boom! He looks down and studies what has landed before him. As people clap at the end of the song, he picks it up and exclaims to all 15,000 people, "Look, it's a shirt with a high five!" He then looked right at me and said, "Thank you so much!" and did the same in sign language. All of the musicians and band members came out to sing "Hidden Track" right there on stage right while I lifted off to cloud nine. Sorry, there are no photographs of him with the shirt except for below during the "Hidden Track" performance. Right there next to his left foot. I just enjoyed the moment. And it was awesome. Or as any Mraz fan would sing along: A-W-E-S-O-M-E.

But then Jason was suddenly overshadowed. Sorry. He was. Even after all that with the shirt. In that one row of seats in front of us and next to those two nice ladies who let us climb over their seats was a young girl with special needs and her family.  She was obviously wheel chair bound for her dad held her the entire concert and for whatever reason, her wheel chair was not part of the concert landscape. This was a big deal for their family because I noticed her earlier in the concert and there were many photos being taken. I even made eyes with her at one point in the show and told her how happy I was that she was there.  I think I even signed "I love you to her" because I could see such happiness in all of their faces for which I held her fully responsible. She kept reaching back for me and looking at me, smiling. Their family was there enjoying the show because of her. And from what I understand within my own secret society, they were truly there to celebrate.

Jason came out for the encore, and yes, as I said, he was overshadowed as he played for all 15,000 of us. It was his song "I Won't Give Up".  Maybe you've heard it. At first listen, the song sounds like it's just about the dedication of a man to his wife or girlfriend who believes in their relationship, but after listening more, it's wildly interpretive. Here are the lyrics. It's inspiring. The hospital mom inside me heard this song and saw this family all holding hands, swaying and singing (as documented in the above photo) and watched with singularly focused joy for them. She told the 18-year-old to cool her jets and pay attention. The determination it can take to get down the road with a child with special needs can be difficult, but, wow, so worth it. I mean, look at the dad. He's SO happy!

And those people who took our photo with the t-shirt before the concert? They found us afterward in the parking lot and were so excited we actually did it. Jen went back to the M-22 store here in Traverse City and told them of our successful mission. Everyone in the store gave her a high five.

I close with a portion of the lyrics from that last song, "I Won't Give Up" or otherwise titled "Battle Hymn of the Mom Who Has a Child with Special Needs"...

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make

Our differences they do a lot to teach us how to use the tools and gifts we got Yeah, we got a lot at stake
And in the end you're still my friend, at least we did intend for us to work
We didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am.

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up...

I won't give up on us
God knows I'm tough, He knows
We've got a lot to learn
God knows we're worth it

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up...

 
Keep looking up!  We'll have a report on the big 5th birthday coming up in a few weeks as well as Bernie's next echo on October 9 back at Mott. Thanks for reading along.

A new blog update. Click here.

Secret Society Love at the Beach

It was never my intention to go to the beach to make a burly grown man cry as a result of our family's presence, but it happened the other day. You just never know what you're going to get at any given public outing and especially when Bernie's in the mix.

We arrived at our favorite local state park beach later in the afternoon earlier this week. The big girls grab their goggles and swim out as far as they can to practice underwater somersaults in the deeper water. Bernie has other plans. She scopes out everyone else's toys. The "beach hawk", as we call her, was in full effect and there was no stopping her as she spied a large green turtle swim ring.

It sat behind a bench where an apparent grandfather sat with his baby grandson. Bernie grabs it and starts running for the water. I intercept. We put it back, apologize, and before I walk away, I hear the man ask me a question.

 "What's her name?"
 "Bernie," I say with a smile.
"Oh, my daughter, too," he gets out with a slight stutter.
"Is her name Bernadette or Bernice?" I ask to clarify the name potential commonality.
"Oh, no. She had Down syndrome," he explains.

 His use of the past tense does not scare me or make me uneasy.

 "Your daughter passed away?"

"Her name was Chrystal. We raised her until she was 20 when she died from a blood clot during a routine surgery to remover her adenoids. Seeing you with your daughter just reminds me of her so much. Tears keep running down my face as I watch you with her out here on the beach. I'm crying like a baby behind these sunglasses."

 I gently touched his shoulder and thanked him for sharing. I think I even shared a "Bless you" even though it was far from a sneeze that I heard. Bernie starts running for the water again and we both know I have to follow.

 "It's the greatest love there is," the man said to me in parting.

 I flashed him a look and a smile that let him know I understood and validated this "secret society love" we share. And he's totally right. Even though much of the world may not understand this kind of love, for that moment, he and I did. And no matter the outcome of his daughter, knowing that love has made all the difference in our lives.

We will be back with a report on our next Ann Arbor visit scheduled for October 9.

Our New Freedom!!

Happy 4th of July!!

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Friday the 13th? Our Story's Prequel

Five years ago today was the day. Friday, April 13, 2007.  I picked up a pregnancy test from the corner drug store and came back to the same bathroom in which I received the news with my other two pregnancies.  I thought about whether or not I should do this on a day like Friday the 13th. Should I wait a day not to have that stigma of this "unlucky date"?  My inability to postpone the gratification of knowing got the best of me. I tore open the wrapper, checked the kinds of lines I was looking for on the box and proceeded to seek results. There it was. Confirmed. New life in the works.

The actual test is now more or less a Christmas tree ornament. Yes, all of those special tests are with us.

I do not consider myself a superstitious person, but from that point forward, however, a strange set of situations arose and would continue to unfold for exactly one year. This was also consequently the 13th year  Jeff and I had been  together after our first date on June 4, 1994. Here's the shakedown.

Our dear dog Fergus, a now oafy and perfectly complacent Labrador,  decided he would roam the neighborhood. After many fence repairs and efforts to make sure 3 little people could not mess with our two gates, he still found a way to lose his collar in the yard and get out,  managing to get picked up by animal control for the bargain price of $125.00.  Talk about angry! The city would want to charge us that amount as well until I appeared before the magistrate with the girls and pregnant belly to dispute the situation. Thankfully, I got out of it and by the next day had an appointment to have the dog neutered. He certainly learned not to mess with me after that day and has been nothing but charming ever since.

 He looks totally innocent here, doesn't he?

There were surprising issues with friends that arose that reminded me of those girly drama days in 8th grade causing hours of tears and frustrations. Certain family members made it clear they only wanted particular conditions attached to their relationships with our family. I was trying to work a part time job to have a little extra spending money.  This was a very isolating time and despite my efforts to send smoke signals of distress from "my island," I really felt like many of the boats of friends and family were just floating by waving under the assumption that I was teaching my kids about fire. Perhaps all of those hormones had something to do with it, but even in retrospect, this was an extremely emotional time with a lot of negativity and sadness seeping into my life.

It was weeks later that I received word from a friend that her sister who had three small children suddenly died after putting the kids to bed one night. The circumstances of her death eluded friends and family. There was no warning. This beautiful mother was suddenly gone from her children and husband and family forever as she sat down to check her email after a long day. Having lost my brother at a young age in an equally tragic situation in the same town, I was compelled to support her and attend the funeral. It was heart wrenching. I came away from the funeral in awe of all that moms do and all that is gone when they aren't able to be there for their families. It would later be revealed that this mom died of a congenital heart defect, unknown to her family until too late. The question hung heavily over my head: What happens when something happens to us as mothers of young children?

I took this question back to my support circle of moms who regularly got together every Monday. They were great. They knew I attended the funeral and the circumstances and it was totally fitting for me to explain this experience. My friend Julie piped up in the midst of my tears. She had battled breast cancer and was in remission.  Her words echoed like organ pipes in an empty sanctuary, "Missy, you would be amazed." This statement was followed by what I remember as a silence. Along with it, the definitive understanding that it is those of us who sit amongst you will rise to the occasion in compassionate and giving ways you just can't even imagine until you really need it.  She conveyed the need for us to just trust that if support is needed, support will be there.  Julie has since lost her battle with cancer, but her words remain with me to this day.

By this time in the year it is August of 2007. That part time job I had taken ended with an attack on my character which I found incredibly offensive and quit. Something I don't like to do, but my sanity needed it.

Word came to me days later that one of my former students was out shopping with her mother and a terrible thing happened. The mom dropped dead unexpectedly in the store as they shopped for a movie to rent for the night. I knew her fairly well from typical school interactions for years. She was the fun-loving and involved mother of three school-aged girls and died of a heart attack in the middle of the day doing ordinary things. It was another funeral to attend and more kids to worry about how they would manage without their mother.  This was getting really difficult.

Within days after this, I came home after taking the kids on a bike ride.  Jeff was out of town so it was essential that I kept the kids busy and outside as much as possible to ensure maximum time in the arms of Morpheus. The twins were 2 at the time and Izzy was 3. Sadie could ride in the seat on the back of the bike while Izzy and Lucy rode in the bike trailer as their pregnant and breathless mama pedaled and pedaled. And wasn't my motive in doing this to make them tired? It was all good though.

Until we got home. I set the children free from the confines of the bike seats and let them play outside while I got something quick and easy out for dinner. I no sooner set a pot of water boiling on the stove when Sadie and Izzy came screaming from around the house. They were frantic and completely panicked, running and flailing through the yard by the time I caught up with them. It wasn't long before I realized that they were being swarmed by bees.

I had no idea if they were allergic to bee stings or not. Bees were crawling out of their shirts and pants and flying around us even after coming inside. I stripped off all of their clothes and examined them for stings. No one seemed to be puffing up, but it was hard to tell with so much crying and screaming happening.   They were starting to swarm around me. I carried the girls from one room to the other hoping to eventually get away from the bees. I quickly called my friend Jen to help me get a handle on the situation. I had no idea how many there were at the time, but when all was said and done and things calmed down, I think I counted between 12 and 18 dead bees in the house up cleaning up. That was just what made it inside the house! Sadie ended up with about 5 stings and Izzy with 7.  I even found a dead bee in my wallet the next morning at church as I reached for an offering. I didn't need to do that again any time soon.

The more well known part of that year's story then began to unfold the next month, as previously documented on this blog and the care page. September 17 would be the day my concerns would shift from all that had happened over the summer to caring for a premature baby, coming to understand Down syndrome, and really getting hammered with ultimately 3 open heart surgeries on our sweet little baby who had so many strikes against her. By May of 2008, we would be home for a while.

But the 13th year was not over yet. In that very beginning of June, 2008, I was diagnosed with my own permanent and irreversible autoimmune disease. With daily medication and attention to the symptoms, it's pretty manageable from everything I understand thus far. Who wants to hear that though? Aye.

Even though Bernie's heart issues fired up again in the next month, the 14th year began on June 4, 2008. Her next surgery worked and monumental hurdles were jumped.  The kid made history in lots of ways. 

 A portion of the new children's and women's hospital brochure. Happy Bern is in the lower left corner...

Facing all of these events, circumstances, and situations within such a concise period of time does seem a bit uncanny and considerably undesirable at first glance.  And tragedy? I'd never wish it upon my worst enemy. But it happens and we have to eventually persevere. Was all of this just plain unlucky this first year? Who knows. Now that I have had 5 years to digest these events, I see a bigger picture. If you can just get through it, what blooms after such an intense storm has tremendous beauty.  And Julie was right. I was totally amazed at who showed up to see us through. Those blossoms are that much more beautiful because of the endured storm it took for it all to eventually take root. Bernie didn't come into our lives on Friday the 13th. She existed weeks before. That day to me now is more like the knock of the big bad wolf of adversity blowing down my door bringing torrential rain, gale-force winds, and electrical mayhem that was begging me to prepare.  But what blossomed in recent years is beautiful, dynamic, and just as strong, if not stronger than any of those other damaging forces. Our children are more compassionate and patient (most of the time), our marriage is stronger than ever, and it's easier on a daily basis to prioritize what bees are worth having in our bonnets. We just had to hold on and trust.

Bernie and Lucy read Kelle Hampton's new book about her journey through her daughter's first year of life with Down syndrome. It just made #11 on the NY Times Bestseller list this week!  Pick it up! 

P.S. You may see the above photo on Kelle's blog "Enjoying the Small Things" soon if you're a follower.

I'd face all of it all over again.  To be able to see and have what's come about as of today makes all of those other events worth facing. People are amazing. Each person who became known to us along the way, no matter how insignificant their acts may seem, was part of this transformation--my transformation--by a greater love to know and understand the big and small stuff that matters and the forces that truly make life grand.

Thank you for five incredible years. I am one LUCKY lady. Happy Friday the 13th! And how strange...I just realized this is the 13th post on this blog!

A Little Winter Video Ditty

Happy winter, Friends...

We are excited to share Bernie's latest and greatest episodes in the form of a little video today. Enjoy!

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