Thursday, March 6, 2014

The Story Behind the Video

I have always used written words as my format of choice to share my story.  I'm one of those people who love texting because it means I can explain things without having to talk to anyone!  Which is not to say I don't enjoy conversation but when it comes to emotional things, hard updates or sharing my heart, I feel a thousand times more comfortable writing it than saying it.  In fact, although hundreds of people follow our story and know all about our journey with Max's diagnosis and health issues, the number of people I have actually spoken to about it or verbally shared my feelings with... well, I could probably count it on my fingers.

So for me to share about his disabilities on camera was a huge deal.  Less of a huge deal granted than talking to people individually since I will let you in on a secret that I totally had every word on a PowerPoint behind the camera so it was about as close to writing it as I could get!  But none the less, it was completely outside my comfort zone and outside of how I would normally choose to share our story or my heart.  But the reasons why I chose to make it were important enough to me that I decided it just might be worth it.

I've mentioned this on Facebook and in different blog posts, but coming to terms with Max's very serious disabilities has been a huge emotional and spiritual journey (for the record, when all this first started happening, I said I would not be using the phrase 'journey' all the time but for lack of a better phrase, it has somehow imbedded itself in my vocabulary!).  About the time I feel that I have reached acceptance and feel at peace with things, something changes and I struggle again to come to terms with circumstances I never imagined enduring and suffering I find heartbreaking.

As is probably evident from my more emotionally laden blog posts the past few months, Max's respiratory issues had me again searching for peace and purpose in what I saw to be a tragic new set of events.  To be grateful that we found a way to sustain Max and offer him stability was easier.  To truly believe that in all this, there would come good was harder.

I do not struggle to see good in our kidney journey.  I do not find talking about it difficult.  I welcome the opportunity to share about it.  I wear a kidney around my neck (a silver necklace to be clear, not like a bloody organ... and I suspect most people just silently wonder why I would wear a bean charm around my neck... she must really love refried beans... which I do...).  I look at those two years and I see survival, I see hope, I see strength and I see a story.  I see a future free from that pain and I see opportunities to show everyone that you can survive adversity and that you can find strength from suffering.  I see blessings.

There is a beautiful song I just recently discovered called 'Blessings'.  The chorus says:
What if our blessings come from raindrops
What if our healing comes through tears
What if a thousand sleepless nights are what it takes to know you're near
What if trials of this life are your mercies in disguise

I hear that song and I think about Addie and find so much truth in it.  And then I think about Max and I find it harder to believe that message wholeheartedly.  I ask God but where is the blessing from his disabilities? Where is the mercy in his weeks of hospitalizations and daily medical treatments at home?  I know you promise that you will bring good but I am not sure I can see it right now.  And after countless hours spent asking and searching for where is the good in all of this and how will good come from it... the answer finally came:

Make good come from this.

Bring good from Max's story.  Ensure the blessings.  Let Max's story touch lives.  Be the one to bring the good.

In the end, I suppose it really is not a new message to me since I have been trying to share our story and use it to bless people for some time.  But, it was a much needed reminder.

If it was my choice, I would completely heal Max (and Addie) tomorrow.  I would wake up and he would be walking and they would both be talking and we would never have to go to the hospital again.  I'm still selfish and given the choice, I'd heal my kids before I'd choose to be the person to make a difference through hardship.  But since that radical of healing has not yet happened for Max, I'm learning to live within the realm of what I can change and what I can do.  And I can make a difference.  And I can ensure Max will make a difference.

Even if it stretches me out of my comfort zone.  Even if it means being vulnerable and personal.  Even if it means actually TALKING about it.

As the annual Spread the Word to End the Word day was approaching, I started to pray about how I would use that opportunity to bring good from Max's disabilities.  I could have written a blog post about it.  And that would have been easy for me.  And it would have been read by 200-300 people which is great.  But I bet most of you reading this right now already do not use the word.  I bet you already think of special needs children as amazing little fighters.  I bet you already love Max and feel blessed by him.  I could talk to you about not using the R word but let's face it, I'd pretty much be preaching to the choir.

As I walked through the hallways at school, it became increasingly clear to me- this is where your message is needed.  These are the hearts to reach.  These kiddos who are the future leaders.  These kiddos who say the word like it doesn't hurt anyone.  These kiddos who sometimes tease their special needs peers.  These kiddos with tender hearts and impressionable minds.  These kiddos that God has entrusted to me for one year.  They need my message way more than YOU do.

So I decided I would try and find a way to speak to them for the day.  I could speak to all my students but that would involve me talking about it 6 times, across two days without seeming super nervous.  And it would just be me.  But then I thought if I could video something, Max and Addie could be in the video and I could share it without having to say it every time!  Of course I have the technology skills of like a 90 year old so I was going to need some serious help!  I work with a wonderful guy who happens to be an amazing videographer who makes videos of snakes.  He was willing to make the video for me.  I talked to one of the Assistant Principals about my idea and he was really encouraging and supportive so that weekend Orry and I made the video.  I wrote a script for myself in like an hour and he and I filmed it in 30 minutes.  We didn't do lots of re-takes and I really only pulled it all together that morning.  I was totally unconcerned with it being perfect, I just wanted to get the message out.

This week I sent the final video that Orry worked hard on and did a great job with to my Principal and she was super supportive and sent it out to be showed in homeroom for every student in the high school, not just our 9th grade campus but across the street as well for our upperclassmen as well!  I decided I'd put in on Facebook as well.

In case you missed the video, here is the link:

And since then I've just been blown away.  My little project to try and reach my freshman students is spreading like wildfire!  3000 teenagers just at my school viewed it.  Then I have teacher friends at other schools showing it.  I had students share it with their parents who are teachers who showed it.  I have a sweet student who passed it on to her youth pastor who is showing it at their next service. I had about 60 Facebook friends from all over the world share the link on their pages.  I was completely blown away by all this and by the amazing feedback and responses.  I never dreamed my little project would have such a wide reach and really touch so many people.  I am so excited and so humbled that God honored my mission to bring good and that so many of my friends and co workers showed their support and LOVE for my family by standing with us for this cause.  I am deeply touched and encouraged and cannot even begin to describe how much the outpouring of enthusiasm and community has meant to me.

And I am just excited because it is a cause I believe is important and worthwhile and that I do believe is going to make a difference to an amazing and important group of people and I'm thrilled I got to be a part of that. And although March 5 is now over and the official Day has passed, please keep sharing the word and please keep sharing my video. I would love to see its impact continue on well past the one day and continue to touch lives.

You know, when you have a child with serious disabilities people talk a lot about the grieving of lost dreams and about the importance of forming new dreams.  I know during the earliest stages in this journey, I did grieve for the dreams I thought were so important for my son.  I had dreamed he would grow up and play sports. I had dreamed he would grow up and live independently and have a successful career and family.  I cried for the lost dreams I had thought were so important.  Until I realized that the only dream I really cared about anymore was that my son got to grow up.  And that he got to be happy doing so.  These days that is my dream.

But then I was thinking last night as I realized that literally thousands of people saw Max on my video and were touched by him, what better or bigger dream can you possibly have for your child than "I dream that when my child grows up, he will change the world and make a difference in the lives of others".

At three years old, Max has already done that.  He has made my greatest Mommy wish ever already come true.  Crying over football games and prom dates seems silly to me in light of the dreams I am seeing come true now.

And with realizations like that, I see that the blessings are there in these raindrops as well.

1 comment:

Ellen Seidman said...

Stephanie, it is so good to connect with you. You have beautiful kids, and excellent taste in boy's names! Your video is absolutely fantastic--it lays everything out so clearly and memorably. I am glad it is making the rounds. It should be required viewing for all kids in high school...and adults too.