Beach Boys

We kind of love the beach. I love looking back through my blog at beach posts of days of yore. Like our first beach trip last summer (I'm happy we made it much sooner this year!). Though not our beach, two summers ago, we spent some time in the salty waters of the ocean in Salem, MA. Pregnant at the beach with Tommy. Or Luke at the beach when he was only 18 months old (picture me clutching my chest).

Yesterday, we made our first beach trip of the season. It was much-awaited by two little boys, the bigger who could not believe that we had to wait until after Tommy's nap. Lucky for him, Tommy woke up stupid early as always and thus, went down for a nap early. First we went for barbecue, where Luke ate an adult-sized pulled pork sandwich. My kid, the carnivore. Not that a full stomach stopped him from climbing a sand dune seven times in a row!

Tommy grew more fearless between this summer and last. He was unafraid to dash into the water, which meant someone had to be on him at all times (this is kind of the norm for Tommy, anyway). He was undaunted, though. He would lose his balance, go under, come up spluttering and laughing, and go back for more.


And, of course, Grandma and Grandpa were more than willing to swing him around to his little heart's content.


Although the temperature passed the 90s, it was the picture perfect beach day. Blue skies, puffy white clouds. We couldn't ask for better beach weather.


We like to get to the beach in the afternoon and stay later. It starts to cool down. People start to clear out and leave for dinner. You get to watch the sun sink lower into the horizon. It makes for the perfect way to end a day.


And the best thing about the beach? The shortest person in this house is so tired that he's still sleeping. Shh....

For Hope

"Lord save us all from a hope tree that has lost the faculty of putting out blossoms." ~ Mark Twain

When the boys were babies, I used to watch the rise and fall of their chests sometimes. I'd stand nearby and place my hand on them to feel the steady rise and fall, the assurance that they were okay. The first time Luke slept through the night, my heart panicked when I opened my eyes to the sunlight. I rolled over, placed my hand in the bassinet and was reassured that yes, he was still breathing. The thought that a baby could just stop breathing while sleeping was so scary and when they passed that stage, I was so grateful. It was one less thing to worry me.

And then Tommy was diagnosed with epilepsy and I learned about sudden unexplained death in epilepsy... and you know what? That's just not fair. Suddenly I was back to tiptoeing into his room every night, multiple times, placing my hand on his chest and waiting for that reassuring rise and fall. Only this was different than when I had infants, because I wasn't able to hope so much, because it might be something that he'd never outgrow. I wrote about feeling like hope was dragging around behind me, like a lead balloon. It was so hard and heavy, for a long time. I kept it inside of me mostly, but it was such a crushing weight. Somehow, the loss of hope is heavier than anything in this world. For awhile, I thought hope might never return. It's so hard to hope when all you see when you close is your eyes is the image of your child with twisted blue lips and a pale face.

But it did... it always does, and I found the sweet hopeful, happiness that we had before his diagnosis.

Yesterday, we walked and ran for people who might not have that hope. We walked and ran because epilepsy is not stronger than us. It's not. It might be big and scary, but it won't beat us. We walked and ran because maybe someday, there will be a cure and maybe someday, parents won't have to go through what we did. As I ran yesterday, I studied the faces of the people I passed. Some wearing team tshirts, some not, and I wondered how they were connected. I wondered what they went through to lead them to this place.

On the way home, Shane asked me what connections the people on our team had to epilepsy, if their children were epileptic. I said, "No. Their connection is Tommy," and that's it. Some of the people on our team are friends of friends. Some of them, I didn't meet until yesterday. Some of them held my hand through his diagnosis and cried with us.

And those who couldn't walk with us because of time or distance or commitments or illnesses were there in spirit, through donations and support. As of today, Tommy's Team has raised $3345. This amount far surpasses my wildest thoughts on what we could do--and we did it all because we aren't going to let epilepsy win. Because, no matter what, this disease is not stronger than our hope.




Huge thanks go out to the sponsor of our tshirts, Caribbean Pools & Spas