The one phrase I wish people would stop saying

I’ve been asked many times what condition my son has.  When I tell them, they look at me with a confused on their face.

Prune Belly is a very rare syndrome and most people have never heard of it.  Honestly, I had never heard of it either – until my child was diagnosed.

I start on how his bladder doesn’t work right which leads to more questions and me telling them how his belly button has a hole in it that we catheterize him through.  By the looks I am getting, I am starting to wonder if I have something on my face.  I fumble over words like ureter, hydronephrosis and creatinine.  I need to remind myself to speak in layman’s terms because to them, I am speaking a foreign language. I eventually just settle on the fact that he has kidney disease.

Then, they say it.

“Everything happens for a reason.”

What do you do at that point?  What do you say?

My son’s condition has not been proven to be genetic.  It is not environmental and it isn’t due to something that I did during my pregnancy.

It just happened.

No explanation available, no reason.

I used to lay awake at night pondering that statement.  I would think what is the reason for this happening?  Why us?  Why this diagnosis?

It is a normal phase to go through when your child is diagnosed with something you’ve never heard of.  You want answers, and you want them now.

It’s been 5 years and I’ve finally come to terms with the fact that there isn’t always a reason for everything.

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I understand that a lot of the time, people just don’t know what to say or how to act and sometimes they can say the wrong things.  I get it, I’ve been there, we all have.

If I can offer any insight to help other’s to avoid this phrase, it would be to say, “so what does this all mean?”

Sometimes you don’t need to say anything, just listen, and if you have the time to listen, I have the time to talk.

Detroit Lions, you are so much more than just football players

Detroit Lions,

I know your bodies are sore and your confidence is running on empty.  I am writing this to hopefully give you some inspiration.

I am just the Mom to a little boy who loves you.  I am the Mom to a 5 year old little boy who believes in you.  I am the Mom to an amazing little boy whose medical condition holds him back from being able to play contact sports, like football.

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Each hit Matthew Stafford takes he cringes.  “Oh, no, Stafford!”  “Look, he’s bleeding, is he okay?”

“Mom, I think Calvin hurt his ankle.”

He gears himself up each week to watch you play and his little heart breaks with every loss but he never gives up on you.

He looks at me with his big hazel eyes, “next week, right Mom?”

He has laid in a hospital bed many times and if he is in the hospital when you are playing, you better believe he makes sure his game is on that TV.

So, no matter how many jerseys people spit on or burn, no matter how many fans leave that stadium early, you are still somebody’s hero.

While you are waiting to run out on that field, you might be worried about what the fans are thinking or what the media is going to say.

You might think you are just a football player, but you are so much more and I want to thank you for taking the time out of your busy schedules to make my son smile.

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You are his inspiration and maybe he is yours.

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The Blanket of Sweet Dreams, a friendship kindled from an unlikely source

Somewhere around April 2014 I came across an article regarding an amazing Art exhibit named “Corpus”.  It was painted by Mexican contemporary visual artist, Elton Duran.  Corpus was a series of paintings that were created to promote organ, eye and tissue donation which was showcased in Detroit, Michigan.

I connected with Elton on Facebook shortly after and we built a friendship.  In my experiences, the people who speak about organ donation or advocate for it usually have a personal factor in their lives that motivates them to do so.  It definitely peaked my curiosity so I asked Elton what his connection to organ donation was.

What he told me restored so much hope in humanity.

He told me that he was given a gift of talent and that it is his way to help others.

It isn’t often that you come across somebody who is so selfless and wants to help others with nothing in return.

It was at that time I knew I had to tell him about ArtPrize. ArtPrize is an international art competition held in Grand Rapids, Michigan.  It is fairly new, and just finished up it’s seventh year.  At the time I told Elton about ArtPrize, he was excited to enter however it was too late to enter for 2014.  So, he made it his mission to enter into ArtPrize for the 7th annual competition in 2015.

After following Oakley’s journey for some time now, he became Elton’s inspiration and motivation to enter ArtPrize 2015.

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Elton came to Grand Rapids to work on ArtPrize and found a host to stay with during his stay here.  There is a lot of behind the scenes work including locating and securing a venue.  I was elated when I found out that he secured the location of the Devos Place, which is an amazing convention center in the heart of Grand Rapids, Michigan.blanket

Elton titled his piece, “The Blanket of Sweet Dreams” which speaks volumes to me and many others.  This amazing piece of art was made to show that children dealing with chronic or degenerative diseases have dreams just like any other child. It is an inspiration to encourage others to become an organ donor so that children suffering from these diseases can still have a childhood and fulfill their dreams.

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On October 18, 2015, I brought Oakley down to see the painting and to meet Elton for the very first time.  We were coming to record pieces of a documentary to talk about what this painting means to us.

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Oakley is always shy at first, but he warms up quickly.  Before we knew it he was explaining what he saw in the painting and what his hopes and dreams are.  He said that he wants to be a cop when he is big and catch the bad guys.  He talked about his family and his pet dog, Presley.  He talked about how he wished that he could go to space one day and that he loves Disneyworld.

It was all surreal to me.  When recording the pieces for the documentary, I cried several times.  I cried of happiness and of sadness.

I was happy because a man that I had never met took it in his heart to create a masterpiece in honor of my son.  Somebody that doesn’t have children of his own, but that has a deep sense of empathy for others.  You don’t see much of this so when you do, it becomes emotional.  Sometimes I feel like nobody is listening when I share bits of our lives and Oakley’s journey.  This proved me wrong; that people do listen and people do care.

I cried because I was sad due to the fact that I have met so many other Mom’s online who have a child like mine.  Mom’s who don’t know what tomorrow holds.  Mom’s that have to force multiple medicines into their child’s body, sign consent forms with no guarantee of the outcome, place their child in the hands of strangers just to keep them alive.  I cried because there are children who have died while battling the effects of kidney disease.  Too many too soon.  I’ve never met so many Mom’s who have had to bury their children, ever.  Kidney disease is an invisible illness and it is a silent killer.  I cried because a very close friend of mine’s son cannot even attend school right now because he is constantly in and out of the hospital with different infections.  It was just an overall release of emotion I didn’t see coming at that point.

Once I stood there and looked at that painting, it made me realize just how important life is.

There are real kids out there fighting a real disease.  These are kids with real hopes & dreams.

After we were finished recording and chatting, we headed to dinner with Elton and his Mother.  We talked about my dream of creating a non-profit to help children with kidney disease and urological issues.  We spoke of his family back in Mexico and his Mother shared photos of their family with us.

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This is a friendship kindled from an unlikely source.

Cheers to dreams, hopes and wishes.

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