Event on Main

I really hate nearly everything about the end of the school year.  The parties, the picnics, the graduations, the salute nights….all of it.  This year was particularly bothersome, as my son graduated from eighth grade.  Now, I’m not that mom that doesn’t want to see my kids grow up….in fact its the opposite, I enjoy seeing them grow and learn and mature…..except when there are milestones that remind me, just how not normal life is for my sweet children.

Will didn’t want to participate in the graduation ceremony or the end of the year picnic performance.  He wanted to attend, but he wanted to sit in the audience with me.  I think he didn’t participate because he heard Faith tell me she wasn’t comfortable going…but if Will did the graduation she would go.

The event was at our church and I let Will know, I wanted to sit in the corner.  The minute we walked in I found a mom who I love, who is safe…..By safe I mean, she gets it.  She herself has had a very serious health crisis.  She lives life from the perspective of understanding why even though I have always been known as a very outgoing person, I want to hide in the corner and not make eye contact with anyone.  She helped me to feel safe that night.

Now, let me be totally clear, these parents and teachers and kids are all pretty wonderful. They are all loving and caring and they want to be supportive, but the reality is, there’s not much they can say or ask that isn’t hard to answer…..How’s Faith…..Has Faith been at school much this year…..Is she coming to the pool party…..every single question makes me want to close my eyes and walk quickly to my car…..

The reality, this school year has been pretty sucky.  She’s been in and out of the hospital all year and we’ve been dealing with some crazy bacteria in her blood that the CDC finally identified and has no idea how she got. In fact, there are no published articles on the bacteria.

It was a bad flu season and we spent most of the winter hiding out to try and keep her healthy….and as far as a pool party, she can’t go to pool parties….though she would love to because she loves to swim. Pools are scary when you have central lines, and her other tubes let water in and we just don’t know if its safe.

Will sat close to me and kept his eyes fixed on me and the stage where the performance was.  During the end of the year video he did his best to distract me, I think I had mentioned to him last year it makes me sad that Faith is never in any of the pictures with her classmates….

Then it was over, Will walked me to the car and said, I know that’s hard mom.

That’s it. It’s hard.  You have these dreams for your children, you want them to be able to experience life, and have some normalcy, and sometimes its just hard to swallow that this, this is our normal.

Faith’s big event in June isn’t the end of the year parties all of her classmates are going to, her party is Event on Main.  Every June since she was kindergarten age she’s been going. Her magical relationship began with Charles Woodson when my friend Tammi asked Faith to participate in an event they were having. The event was to raise money for the Woodson Clinical research fund. We are taking raising money to do life saving research for kids like Faith.  As you can imagine we were happy to help.

Our passion to help with this cause is fueled by our desire to make things easier for our daughter, and the other kids who deal with a life that’s harder than they deserve.  I remember when we explained to Faith why we were working with the foundation she said, so all these people here want to help cure my disease? She was seven at the time and I remember her looking around the room studying the people that were there, looking at the people who wanted to help, she said to me, I just can’t believe this many people care.

Over the years she’s gotten more and more excited to go.  Every year her dad buys her a new dress and this year she’s wearing heels. She’s always excited to see Charles when she’s all dressed up.  She recognizes people from the years before.  And of course they all talk about how much she’s grown up, they ask her what she’s been up to, and what her plans are for the summer….and they just don’t ask how her health is, and I think its because they know….they know Faith has a chronic illness and they are there to make her life better….she’s like a visual reminder that this child has been dealing with this for as long as they can remember and the cause that they stand behind has a very real face.

For me, it’s different than the school picnic. Here, I like to make eye contact and smile at everyone.  I hope that they can see my gratitude.  This year when the infectious disease doctors told me there was a bacteria in Faith’s blood and they couldn’t identify it, I realized how every bit of scientific research is so important.  I don’t expect to find a way to fix the nerves that don’t work in Faiths body or add nerves where they are missing in her lifetime.  I do think we can find a way to keep her healthy without IV medication.  And I dream of a day when she has no ostomy bag or central line.

Honestly, I dream most of little things, like her being able to go to a birthday sleepover or swimming in her dads pool.  I know that I want life to be easier for her.  I want her to stop missing out on normal kid stuff because her body isn’t cooperating.

We are so grateful to have so many people who want to make life easier for kids like Faith.  Her team at Mott, Dr. Newman, Jayne, Dr. Kullgren, Scotty, Aamira, Gene, Kristin, and of course Charles.

Charles has done a pretty remarkable thing.  He has used his gifts to do so many life changing acts of goodness. It’s funny because when people ask Faith about her friend Charles they go into his football stats and she just smiles…..his football is so secondary to her.  His legacy in her eyes is his work with Mott as a motivator and an educator about the need for research and to raise money to fund that research….sure he happens to be one of the greatest football players of all time…..to her he will aways be Charles, her friend that did all he could to make her life easier.  The love we have for him is real. The Michigan community is blessed to have him and so are we.

So this Thursday, we will be headed to Main Street in Ann Arbor, to celebrate with 500 of our closest friends…..and we will be raising money for research, research for all the kids, kids like Faith, who miss the school picnics.

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