Now is now.

When I was seventeen years old, I moved into Taylor Hall in August of 2000, several days before everyone else arrived to settle into the BYU dorms. My mom and sister came up a little later from California with all my stuff, so I spent a few days alone eating Corn Pops and drinking pink lemonade (ahhhh...freedom!) and going to drive-in movies with my cousin Jake who apparently didn't have much going on either. Which reminds me of the nights that Hester and I spent at Jake and Peter's house (Jake and Peter are her brothers) that August just before we moved into our dorms. We made cookies and I ate about 30 in one night. That night didn't end well.

Anyway. I don't remember all the details of everyone else trickling in during that last week in August before classes started but I do remember the girl who moved in right across the hall from me and my roommate Rachel. Jackie was from southern California too, and had grown up a few towns over from my Grandma Clayton's town. We had some kind of get-to-know-you icebreaker activity on the first day, and she announced, "I'm Jackie and my boyfriend is Jamaican." Jackie and I and some of the other girls in our hall had a lot of fun and silly times that year. I learned a lot from her too. She was always sort of the mother figure, with funny old-lady phrases like "Can't beat that with a hammer." I remember driving with Jackie in Hester's car once, an ancient Chevy...something???? called Old Bluey which didn't need a key to start the ignition. Hester was very kind and let me borrow Old Bluey from time to time. This time, the car wouldn't start! Even with the key. I tried and tried and Jackie suggested saying a prayer, so we did. I looked down and realized the gear shift was in neutral. I put it into park and--surprise!--Old Bluey fired right up and we laughed our heads off.

OK, enough memories of that silly and happy time. There are way too many for one blog post. Jackie and I kept in touch after our boyfriends both went on their missions and we moved into different apartments in Provo. She married that Jamaican boyfriend after he got home from Madagascar, and I married my own dream guy (ahem...not the boy I had sent on a mission), and we both settled in to our lives, saying hi now and then through blogs, e-mail and Facebook.

Ten years later, just over a month ago, she sent out an e-mail about her third son's recent diagnosis of Spinal Muscular Atrophy (SMA), Type 1, a rare and terminal genetic disease. Baby Mathis is 7 months old and is expected to live to about 2 years old or less. He has very limited muscle capacity, can't sit up or hold up his own head, and needs to either be held, in arms or a sling, or lie completely flat at all times so that he can breathe properly. She and Dujuan decided to write a blog about Mathis's experience on earth, Sharing Our Piece of Heaven. With her permission I'm posting links to it and a few pictures. Between her blog updates, Facebook updates, and Instagram updates, I feel love and inspiration almost every day from her family. She is honest about the tough days and so full of tenderness about every day. And even through pictures I am just in love with Mathis's eyes. There is something special there that I don't see in every child. Or do I?

Swinging on a tire swing with his brothers

I heard a TED talk a few weeks ago by Richard Seymour where he talked about "How beauty feels." He briefly showed some mundane objects and for each added a detail that made that object mean something more. One was a crude pencil sketch of a flower and a butterfly. He showed the photo to the audience and after a few moments said, "This is the last act on this earth of a little girl called Heidi, five years old, before she died of cancer of the spine. It's the last thing she did, the last physical act. Look at that picture. Look at the innocence, look at the beauty in it. Is it beautiful now?" Is there something about a terminal illness that makes time with a person actually more special? Or is that preciousness just made more evident by the looming pain of loss?

Eating at In-N-Out

Jackie and Dujuan wrote up a Hope List, which is a list of big and small things they hoped for their children to experience on earth, and decided to check off as many items as they can while they have all three of their boys, Manix, Mason, and Mathis, together on earth. It includes things like: swim; try sushi; first day of school; slide on a slide; go to BYU; go to the MTC; slam dunk; finger-paint. I wanted to share it with you because it has really been so life-changing for me. Maybe it's because I love Jackie as a person but I think it's also because I--who am deliberate in many aspects of life but super lazy as far as making sure my kids do specific things just for the sake of doing them--feel so pulled toward that image: of deliberately living life and making sure my kids get the opportunity to taste some of the same simple joys I have tasted. Of really looking into my kids' eyes and seeing that spark there that is so evident to me in Mathis's eyes.

I remember when Dawn was pregnant with Jonah, their family approached those months in much the same way: going to Disneyland together, the beach together, all things that they liked to do as a family together and could do while Jonah was safe in Dawn's belly and they were all literally together.

In one post, Jackie wrote:

We had a most tender and dare I say sacred experience that night. After fingerprinting but just before we went inside for bath time Manix was smiling and just so happy. He yelled, "I LOVE THIS WORLD!!!" THIS phrase is exactly why we are doing this. It is why we made and are carrying out this Hope list. So our kids can experience all the wonderful things this amazing world has to offer. 
It's not the amount of years we have to experience life, it's the experiences we have in our life that make it amazing. I committed last night to continue our Hope list even after Mathis has left this world. We need to live for Manix and Mason just as much as Mathis. We are put on this earth to experience joy and to learn and grow. Gratitude is a trite word to describe the fullness of my heart. I love that we have called it a Hope list. All of these experiences prove to my heart and soul that there is more to life than this mortal existence. We are here for a purpose, many purposes. It is our responsibility to find out what our purpose is.

Slam dunk!

I recently read the last page of the book Little House in the Big Woods and after reading the above post by Jackie, I connected that with cherishing the time with little ones and making it special for them. Not necessarily with Elf on the Shelf or green food coloring (to reference a popular sentiment) but with whatever we deem special ourselves. Which could include Elf on the Shelf or not. Maybe it just includes stuff like getting donuts on a Saturday or blowing dandelions all over the neighbor's lawn. I thought specifically about her oldest boy, Manix, and how he is going to remember this special time with his baby brother. These are the last few lines of the book (Laura is 5 years old in the book):

When the fiddle had stopped singing Laura called out softly, "What are the days of auld lang syne, Pa?" 

"They are the days of a long time ago, Laura," Pa said. "Go to sleep, now." 

But Laura lay awake a little while, listening to Pa's fiddle softly playing and to the lonely sound of the wind in the Big Woods. She looked at Pa sitting on the bench by the hearth, the fire-light gleaming on his brown hair and beard and glistening on the honey-brown fiddle. She looked at Ma, gently rocking and knitting. 

She thought to herself, "This is now." 

She was glad that the cosy house, and Pa and Ma and the fire-light and the music, were now. They could not be forgotten, she thought, because now is now. It can never be a long time ago.