The Bay Area Buddy Walk

Our family attended the Bay Area Buddy Walk put on by the Silicon Valley Down Syndrome Network at Lake Cunningham in San Jose.  The Buddy Walk is an event that takes place all over the country put on by local groups that helps raise awareness for Down Syndrome.  It was a very well attended event.  There were 1300 people pre-registered to attend and I'd say that there were probably that many there.  This year, I decided that we would not form a team and ask for donations.  So many people donated to the SVDSN or Lucile Packard when Julia died and then so many others contributed to the Julia bench at Mt. Hermon.  I could not bring myself to ask for more money from people.  So I decided we would join another team and contribue money ourselves.  We joined "Penny's Posse" this year.  Diana Otwell is a very active member of the SVDSN and she has kept in touch after Julia died.  She was trying to raise enough so that her daughter, Penny, would win an iPad.  I'm not sure if she did, but at least we were able to bring her a little closer to her goal.  All the money raised goes directly to the SVDSN.  I'm trying to remember how old Penny is... I'm thinking around 5 or 6.  Here is a photo of "Penny's Posse."

The way it works is that they have lots of tables set up, jumpy houses, a DJ who also led some exercises, popcorn, snowcones, pizza, drinks, face painting, and other things for the kids and families to do.  Everything is free!  And then at 11:00, they do the "walk".  It's about a quarter mile around a big field next to the lake.  Teams gather and it's like a big parade.  There are signs posted around the walk to cheer on the various teams.  There are also signs that tell facts about Down syndrome and raise awareness.  Teams range in size from 3 to 30!  There was a sign to honor Julia this year that the SVDSN did for us.  It was very kind of them.

Here are a couple pictures of Bob and Mattie on the "walk."

It was harder on me emotionally to be there than I had expected.  It made me miss Julia.  But I am so glad we went.  I got so see several women that I had connected with in the SVDSN that I hadn't seen in a while: Diana, Marcy, Jenny, Ellen, and even Julia's former pediatrician, Dr. Jane Chen.  It was also nice to see some of the names I recognized from reading various posts on the SVDSN yahoo group.  (I still am subscribed to the the SVDSN yahoo group and I read many of the posts.)  It was just nice to be a part of it all.

Fall has arrived

The past 2 days it has been mostly cloudy and bit cooler.  It feels as if fall has arrived.  I generally love the fall.  I always have especially since Mattie was born on September 21st... just before fall arrives.  With her auburn hair, I have always loved shooting pictures of her with pumpkins and fall colored leaves.  This fall, however, I am filled with the added emotions of Julia.  It's amazing how sights, smells, experiences can shoot you back instantly in time and you can relive the past in a moment.  The other day I was driving to my friend's house who lives in Menlo Park.  I took 280 to get there which is not that unusual.  However, it was mid morning and it was fall.  I was unexpectedly transported back to a year ago driving to Lucile Packard Children's hospital.   It felt very real.  All these images flooded my head... from walking through the front doors into the hospital, to walking into the NICU, the PICN, or the CVICU... all the images came at once.  I could see my Julia laying in a hospital bassinet.  I visioned approaching her and rubbing her head as I said hello to her for the first time that day.  It all came back in a flash.

Today, I took down all the fall decorations from the attic and decorated the house for fall.  I love decorating.  It makes the house feel cozy.  Tonight, however, as I was doing dishes, I was all of a sudden hit with the memory of all the mixed feelings I had a year ago as I was (what I thought) 7 weeks away from delivery.  The feelings of anticipation, of fear, of wondering how our lives were going to turn out.  I wish I could say it was a joyous time but it was not.  I just remember being pregnant and thinking to myself how disappointing that this was most likely my last pregnancy and that I didn't really get to enjoy it.  I had so many questions.  Would she be healthy? What about her heart defect? When would she have surgery? Would she be able to breastfeed?  How high functioning would she be?  Would she talk or walk?  How is life with her going to affect my marriage and Mattie.  (Though I was also devoting energy to thinking at the time of the ways she could positively affect our life and Mattie's life.  I was really trying to gear myself up.   But I was scared.)  It was about now a year ago that I was transferred from my regular OBgyn to a high risk Stanford doctor and all my care was transferred to LCPH.  I was going in weekly for non stress tests.  It was a scary time.   At the time, I was not feeling like I could really "nest" for Julia (the was so much uncertainty and mixed emotions) so I instead nested by decorating my house with pumpkins.   Today, the decorations took me back.  I bet they will every year.

Fall... it's going to be a rough one this year.  Next week is Julia's 11 month birthday.  Mattie's kindergarten pumpkin patch field trip is on that day.  I'm sure I'll be writing about how it went.  Because I'm the field trip coordinator, I'm sure I'll be very consumed with the trip running smoothly.  So that will probably be good.   But her 1 year birthday is approaching and I can't get her off my mind. Mattie has been drawing more pictures of Julia, too.  It's like she "knows."  She has also been talking about Julia more or including her name in her play.  (Mattie often will play "family" with dolls or stuffed animals and have 2 sisters, one being Mattie and one being Julia.)

Fall.  For me, this year, it will be a melancholy season, a season of reflection, a season of remembrance, a season of sadness, all intermixed with the joys of pumpkins, with photos with fallen leaves, of a little girl with auburn hair... it's just that I once had 2 little girls with orange hair and now I have one.

8 months since her death

Today marks 8 months since Julia died.  I have been thinking about her a lot lately.  In the past month or so, my grief has felt more sad.  It is like all the hardship of having a very sick baby starts to fade and I am left thinking more about her sweetness, her softness, her face, her hair, and all the good things about her and I miss her.  I miss having a baby and I miss that Mattie had a companion.

Fortunately, today, there was a lot of positive distraction.  We are staying in our Tahoe house... the one we just bought.  We've moved most of the furniture into it and now we get to start enjoying it.  It is truly "therapy" to be in the woods.  And it has been very unifying and bonding for our family to go on hikes and go exploring together.  Mattie loves it and so do Bob and I.  We are all happy.  Today we went for a hike up to the top of this cliff called Eagle Rock.  The views were spectacular.  Here is a photo of our family at the top:

Yesterday was Sunday and so we decided to visit a church in Tahoe City.  Since we will be spending more time here, I thought we should find a church we could attend while we're here on weekends.  It was a really friendly place and we all liked it.  During the singing, Mattie asked to borrow a pen so she could doodle on the program.   After she was done, she knelt close to my ear and whispered the interpretation of her drawing.  I was caught off guard.  First I'll show you a photo of the program and then I'll explain it to you.

So the picture she drew is of Heaven.  All the little dark circles on the bottom of the program are the heads of angels.  All the scribbles are Heaven, as in the space of Heaven.  On the right hand page, there is a sun that Mattie said was the star of Jesus. (Somehow the star of David had come up in conversation the night before so that was fresh on her mind.  I think the star of Jesus, to Mattie, is the star over the manger.) Just to the left under the "star" is a scribbled mass that Mattie said was Jesus.  And then if you can see the small scribbled mass on the right under the "star" Mattie said was Julia.  It brought tears to my eyes instantly.  I was already thinking about Julia.  I think about Julia a lot in church because that is when I pause and sit with God and that is Who Julia is with.   It is an amazing picture and very profound.  I will be keeping it forever.  Mattie is indeed still processing, as we all are!  But it brings me much joy that she sees Julia in Heaven with Jesus along with a company of angels.  It was perfect, I thought on the eve of 8 month anniversary of Julia going to be with Jesus.