Saturday, March 2


Grab your tissues.  
I know I did.  

At the last Down syndrome outreach meeting we heard that the Sprout Film Festival was once again coming to Bellingham courtesy of the Arc and great sponsors locally.  Prepare the popcorn!  The Sprout film festival is an amazing collection of beautiful and inspiring short movies made by and about people with developmental disabilities.  Their families.  Their teachers and communities.  It is just an amazing glimpse at movies made about humanity.  So I was thrilled it was coming back this year!  Information for this year's event is at the very bottom of this post.
I remember last year, Colin and I had plans for 'date night' at the 1st annual Sprout Film Festival.  But plans changed and he needed to stay home with our boy wonder (Tommy), so I took Nate for the gala event that evening and enjoyed yummy foods, lots of familiar faces and amazing movies. 

Movies that inspired my mind.  Like this one that I just saw on their website:

Stories that ripped my heart out of my chest and made tears stream from my eyes.  Like ugly cry kinda movies that were so emotionally touching. 

A story similar to ours but beautifully unique is "Distinctively".  Another one I found on their website:

And if you ever get a chance to watch "The Eighth Day", well, invite me over.  I'll bring my own box of tissues.  Gee whiz I love that movie.

But the most touching movie for Nate and I was one based on conversations with siblings.  About what it was like growing up with a brother or sister that is disabled.  The good, the great, the bad and well.... the really really ugly.

I wasn't expecting to see a movie with such raw emotions about the sibling experience.  I like to pretend in my own little world that family life is peachy.  Just peachy.  And that Tommy's sister and brothers are just "fine" with who he is.  Just fine.  Well, life is a bit more complicated than that.  More involved than simple and clear emotions of just fine.

So on the drive home, once the fabulous movie night was over (there were LOTS of great shorts to watch), I asked Nate about his sibling experience.  And he quietly shared.  And although there were a lot of specifics and feelings and thoughts... in the end he felt he was better, more whole, more in tune with himself for having Tommy as a brother.  Yes he remembers tight financial times as we watched all of our savings depleted with hospital stays the first year.  But as a family, we all remember the reason, we lost just about everything so our son, their brother, would have a lifetime. Nate doesn't really recognize disabilities in people, even today, he will correct me when I get anxious and excited about seeing someone employed at the grocery store with a disability.  Mom, they are no different and don't want your smiles.  And Nate volunteers time at the Buddy Walk and for various events by the Arc.  Humanity is just that, an all human event.

So I asked Hannah recently what her experience was like with Tommy as a brother.  If I was more artistic I would do more than cut and paste from my email into here.  But I'm not artistic.  So here it is :)

"There are many ups and downs of being a sibling to a child with Down syndrome. I am an older sister to a brother who has down syndrome, he is six years now, but I was 12 when he was born. As you can tell, being a pre-teen (at12) and having a new member of the family being born is not an easy thing in the first place! None the less having this family member be born a little bit different than what you were expecting. Having a sibling with Down syndrome requires more care, more protection, more help, more staying at home, more explaining to friends, etc than you would do with a normal child. To most, this sounds like such a burden, especially with all the surgeries and special care that Tommy received at first. It was a shock to hold my normal healthy baby brother Liam (who was the twin to Tommy), and then hold my brother with Ds who had tubes coming out all ends of his small little body!   I was scared, not only for this little boy's life that I barely knew and I had already grown so in love with, but for his future in my life as well. How was I going to explain this to my friends, and what if people made fun of him?   The truth is, people understand, siblings with disabilities are more common than you think, and people are very accepting. And those who aren't, aren't people that you should want to surround yourself with anyways. And the people that make fun of people with disabilities are people that I have found to be very sick and lacking a great deal of understanding. Having a developmental disability does not make you lifeless, needy, or time consuming, instead......  look at it as a person with a developmental disability often gives life lessons to those who are not disabled.  They are the most loving and giving people, and they are helpful unique individuals!   Having a sibling with Ds has taught me to be patient and accepting of others, sometimes they are the ones who have the most to teach you."

Last but not least in the sibling line up is Tommy's younger twin by 12 minutes Liam.  Oh my goodness is he sweet and kind.  And a recent event reminded me how close Liam's heart is to Tommy.  At school they celebrated the "100th" day of school.  All the typical fun activities.  Count to 100, name 100 things you like, describe 100 things you don't like.  Well, the teacher sent home a sheet where she had asked the students "If you could have 100 more of anything in the world, what would it be?"  And Liam wrote in big letters "Tommy's".  Yep.  He would choose to have 100 more Tommy's.  Truth is, I would too.  Pass the box of tissues, it makes me tear up even now.

Pretty cool people they all are.  Four of the best kids in the world.  In a family that is so human and on a path so evident to everyone. 

There was a study published in the American Journal of Medical Genetics in October 2011 on "Having a son or daughter with Down syndrome: Perspectives from mothers and fathers".  I had read it with great interest because so often new families ask for perspective, advice, thoughts, wisdom as I'm only a few years farther along a similar path than them.  All I can seem to muster is "I wouldn't change a single thing".  Not him, not us, not any of the events that now make up our life.  It's perfect.  Perfectly us.

But in the article they support many of the same feeling that Tommy's siblings have.  Each milestone is a thrilling occurrence.  You will learn a new kind of patience, it's more like perseverance.  The researchers even noted a "Ds advantage" in that their families are described by others as warmer, closer and more harmonious.  Shy grin.  You just need to catch ours on a good day!  Because that is NOT us on plenty of days.

Tommy has three wonderful siblings to help him during his lifetime.
  But all three believe that HE will help them more. 

If you are a parent and want your family to enjoy fun events, especially some "sibling" special activities, you can find events here:  Parent 2 Parent Whatcom County
Sprout Film Festival is Tuesday April 23rd.  Screenings will be at 10:00am, 1:00pm and 6:30pm. The morning screenings will be free to the public. The evening program will include a fun reception with delicious appetizers, desserts and opportunities to win prizes. Tickets will be $20 for members of the Arc or the Pickford and $25 for non-members. Tickets will be available the first week of April: For more information, contact Amy at The Arc: (360) 715-0170 ext.309, amym@arcwhatcom​.org.

Tommy Adventures