Sep 21, 2012

Packing light

I dragged I convinced I forced Our family decided to go to the beach. Emerald Isle to be precise. I knew it was going to be so much fun, especially since I dragged I convinced I forced the Fergies* decided to come too! 

And of course I was right. Ben only cried for 1/4 of the drive, the front-desk-lady charged our credit card $700 for a one-night stay (who knew King sized rooms were so expensive?!), and I forgot the suitcase that had all of my (and consequently Doug's) clothes. Actually, make that 'stuff' - I forgot all of our stuff. Who forgets the swimsuit but remembers the Dr. Pepper? On a trip to the beach no less. And the most frustrating thing is that I had spent practically all day packing and had remembered everything. Except putting the bag in the car...

Thank heavens for Walmart. After buying all the hygiene essentials we found swimsuits on clearance! One teensy little problem: apparently everyone is my size so I was left with a hideous, too-big tankini top paired with boy shorts style underwear for bottoms. tmi? The plus side (haha get it?) is that it only cost $8 for the whole outfit. Doug, being a man, had no problem finding everything he needed. 

Doesn't Ben look like he's having a blast!?
No, but really, it all turned out okay. The Fergusons supplied us with everything else we needed (thanks, guys!) and the hotel only ended up costing $39. 

So...want to see a video of Ben touching the ocean? Of course you do. 

video


Other than these few minutes, Ben spent his entire beach experience in the baby tent (also courtesy of our awesome friends).

Look, I even remembered the football and chairs - go figure.
Tent in background.
Doug and I both quietly agreed that it probably would have been easier and more fun without Ben (oh I feel so guilty writing that down) but we wouldn't have it any other way. Despite the things that went wrong, most things went right and I absolutely loved our mini-vacation. Loved it enough to go again! But next time I'll remember to put our luggage in the car.



*Did you know that's my nickname for your family, Em? Speaking of 'family nicknames', Doug and I often dub nicknames for our friends because sometimes it's just that much easier to remember and definitely that much more fun. So, if you want to know yours, just ask. But don't be offended if we haven't made one up for you yet!

Sep 10, 2012

Dreams

When I became a parent it amazed me that I was entrusted to care for this little child. I am in awe of his potential and feel responsible for helping him read that potential - which is frankly, quite daunting. One night, Doug and I discussed the hopes and dreams we have for our Benjamin. It was a thoughtful, spiritual, and moving experience, mostly because I don't think I had realized how much I already loved him. And when you love someone, you want the world for them.

I read about another Ben - Ben Siedman - whose story comes close to home. I'm sure in Ben's early life, his mom had similar thoughts as I did, though now I can imagine her thoughts have evolved. Her Ben was diagnosed with Sanfilippo Syndrome at 15 months.


In this video, Noah, Ben's brother, says "I really wish my brother would sorta be normal." That hurts my heart. Of course he wants Ben to be normal. Ben's family has established a foundation, the Sanfilippo Research Foundation to increase awareness and raise money for research. They have been remarkably successful thus far as stated on their website:
Success in fundraising this year could help researchers meet their goal of a human clinical trial and pave the way for a healthy future for thousands of children afflicted with genetic disorders.
You can help them with fundraising by voting for them on Facebook here through the Chase Community Giving Program.

I sincerely think this foundation can do a lot of good with their research. Ben's story touched me on multiple levels and I just feel fortunate that I heard about him today.