Remembering Julia... 1 year since her "Homecoming"

I spent a lot of time anticipating the 1-year date of Julia's death.  I think my biggest fear was that it would come and go and that it would not be special or meaningful.  Life has a way of swallowing up your time and if you are not purposeful, you can live a life that is, well, without purpose.  There is nothing like the tyranny of the urgent.  Mattie is currently at a birthday party and a friend of mine was willing to take her with her her daughter.  (I am so grateful!)  I was really desiring some time to blog about the last couple of days and here is my chance!

I have to say that it has been a very nice, peaceful, and meaningful couple of days.  I am so thankful to God and for everyone's prayers for our family.  We have felt each one.

Friday, February 8th.
It was a regular morning of getting Mattie ready and off to school.  Then around 10am, Bob and I drove over to Mt. Hermon to spend some time at Julia's bench by ourselves.  It was really nice to have some time by ourselves in peace and quiet.  It had been a bit rainy so we brought some towels to place on the bench.  Thankfully, however, it was not rainy at all when we there.  We probably sat on the bench for 45 minutes or so and just stared at the beautiful scenery and listened to the dancing water in the stream below.  Bob had mentioned on the way over that when he gets into open spaces and especially forested areas, his stress level drops considerably.  I agree.  We both feel like the bench is a perfect place for us to find peace and reflect about Julia.  And it was so nice to be there alone together.  After a while, we got in the car and started back home.  We ended up grabbing some lunch on the way.  Again, it was nice to be out and alone together.  I am so grateful that Bob and I have seemed to beat the odds in that our marriage is thriving despite the trials we have encountered.  At least 50% of marriages don't make it beyond the death of a child.  We are still going to a counselor regularly which I think has been an excellent investment.  We also both have a very deep commitment to each other and love each other very much.  We also love our daughter, Mattie.  Neither of us are content staying at the status quo but we continue to strive to move forward and make what we have even better.  Marriage is a marathon- it has ups and downs but you got to keep putting one foot in front of the other, you can't give up.  Anyway, I digressed.  Mattie and I had a very nice mellow afternoon together.  We played Lincoln Logs, read books together, and Mattie even played a bit on her own while I read mail and emails.  Our friend, Wanda Belton, who is like a grandmother to Mattie, came over with some flowers. One year ago, Steve and Wanda had already been scheduled to bring dinner the evening Julia died.  Wanda had just felt like she should make a little extra not knowing that Julia was about to pass away.  We ended up having 8 people here including Wanda and Steve and it perfectly fed everyone.  It was so nice to catch up with Wanda a bit.  She was about to leave when I realized it was 4:45... the time when Julia died.  I was glad to share that moment with Wanda and it was nice that I was not alone.  After Wanda left, Mattie and I ran to the library to get some books for her and Bob picked up some take out on the way home from work.  It was nice to not have to worry about cooking anything.  At dinner that night, we spent a little time talking about Julia but not a lot.  Mattie will "go there" a little, but quickly changes the topic.  We don't want to push things.  We explained to her that 1 year ago was when Julia died.  We asked if she remembered that day.  It is unclear how much she remembers.  I had put out the big photo of Julia and some of her things around the living room for the weekend just to help keep memories alive.

Here is Bob and me at the bench:

Saturday, Feb 9th.

We had a very mellow morning puttering around the house and getting some much needed chores done.  Then after lunch, we took off to visit the bench as a family.  It was a beautiful sunny day.  My request was to go into Santa Cruz and get some Marianne's ice cream before going to the bench which we did.  Yum. :)  Mattie was very excited to visit the bench.  She really likes going to Mt. Hermon and running on all the trails.  Again, I was feeling so grateful that the special place we have to go to remember Julia is in the woods and a place all 3 of us enjoy going.  The bench has been gathering some grime so we brought some cleaner and some rags to work on polishing it up and wiping it down.  Also, I had wanted to leave a flower at the bench.  So I took one of the roses that Wanda had brought us the day before and put a pink ribbon around it.  It was just perfect.

When we visit the bench, often Mattie flitters around on the trails while Bob and I sit on the bench.  Mattie did spend some time sitting with us this time.  While we were all sitting together, I posed the question, "So what do you remember most about Julia?"  I decided that I should probably go first since I posed the question.  So I said that I remember her soft red hair.  I asked Mattie if she remembered how soft Julia's hair was and she said she did.  I asked Mattie what she remembered about Julia.  She said she remembered Julia's pouty face.  We all laughed because Julia did have a terrific pouty face.  It was the calm before the storm of her very loud and piercing cry.
Exhibit A:

We talked a little more about things we remembered about Julia.  Then I mentioned that I didn't really know a lot about Heaven, but that I'd like to think that people in Heaven can look down on the people they love here on Earth and see what they're up to and that I'd hope that Julia could be looking down on us sitting at her bench.  I said that I thought it would make Julia happy knowing we were together thinking about her.  I asked Mattie if she thought that maybe Julia could see us from Heaven.  She said "yah" and then promptly changed the subject.  That was my que that that was enough talking of Julia stuff and that it was becoming uncomfortable for her.  At that point I suggested that we bring out some of the snacks that Mattie had packed for our little trip.  Before leaving for Santa Cruz, Mattie had decided that she wanted to pack snacks.  So she got into the cupboard where we keep a bin of snack type items and chose a variety of snacks and packed them into small ziplocks all by herself.  Some of these snacks included Swedish Fish, dried seaweed, pistachios, and juice boxes.   After enjoying a sampling of snacks, I went to set up the camera on a stump to make sure we got a family shot before leaving.  Meanwhile, Mattie decided to make a list of all the things in the forest while I was working on this.  Bob helped her spell the words.  I have no idea where the paper and pen came from.  She must have packed them in the backpack with the snacks.  Here's a few photos:

After this we packed it up.  I left the flower sitting on the bench and hoped that people would figure out why it was left there.  If not, that would be okay, too.  I just hoped it could stay on the bench a while as a beautiful reminder of the little delicate life that it was representing.

Bob had made an early reservation at this local German restaurant, the Tyrolian Inn, in Ben Lomand.  He had been wanting to go there.  So we drove there for some dinner.  It's a small family owned and operated restaurant and hardly anyone was there when we arrived at 5:00pm.  They actually had a play area in another part of the restaurant that Mattie was free to go to and from during the meal.  So at times it was almost like having a babysitter because Bob and I had chunks of time that we could sit by ourselves in peace and quiet and eat our meal.  It was awesome.  We got a sampling of German foods and stuffed ourselves.  Mattie liked most things she tried, including the rabbit.  (Yep, I did say rabbit.) Then it was time to drive home.  We got back and put Mattie to bed and then we crashed ourselves.  It really was a nice day.  

11 months ago

Eleven months ago today Julia passed away.  I was spending time reflecting today about her.  I started trying to remember when she went back in the hospital.  I knew it must have been around this time last year.  It was on the 6th, 1 month and 2 days before her death.  One year ago I was clueless as to Julia's fate.  That was good.

It's funny the things that trigger emotion.  Yesterday, I was sitting in on Mattie's grief counseling through Hospice.  It is really just a time for her to play and the grief counselor and I just are observers.  It takes place in a wonderful play room and the grief counselor has a huge collection of toy figures of all kinds, both people and animals.  Mattie likes to act out things in this sand table.  As I was sitting there, a particular puppet caught my eye out of the 20 or so puppets on the puppet stand in the room.  It was right at my eye level and it was a puppet in a surgeon's outfit.  Seeing that puppet automatically took me back to being in the OR for my C-section with Julia.  I started reflecting on the moment she was born and how happy I was she was so much bigger and healthier than expected.  It was such a joyous moment after months of fear.  The future looked optimistic.  Bob was so loving and supportive.  She was beautiful and she had red hair.   All those memories... spurred on by a puppet.   And then there was an interesting moment in Mattie's play a few minutes later.  She had separated all the people and animal figures and put a fence between them.  She had taken one of the unicorns and buried it.  She made sure the unicorn was completely covered.  And then she paused.  I couldn't tell if she was temporarily distracted by the fingernail on the thumb which she was looking at... but it seemed a bit more than that.  It was the look on her face.  Was she working out Julia's death?  Who knows?  She's 5 years old and it's difficult to make conclusions such as that.  But it certainly touched my heart.  At the Christmas Eve service in Tahoe, she said at one point, "I miss my baby sister."  I know she does and that is what tears my heart in two.  The whole thing is just not fair.  Thankfully, Julia got the best deal of us all.  But even she was deprived growing up with her family who just wanted to love her.  

I miss her.

An advent prayer a friend sent me.

Such a loss!  Such a keen and tearing pain.  Even when I am in a crowded room, there is a loneliness I never knew existed.  Comforting God, I have turned to you so many times for solace, and I come again. While the world is bright and sparkling, my heart feels leaden and has an emptiness that cannot be filled.

Lord, how can I enter into this season of joy?  In my head I celebrate your birth into this world, but in my everyday life, I am filled with a grief that runs so very deep. You blessed me with a loving relationship and now it is gone from my life. How can I be faithful to that love and the memory of that love and my sorrow in this season of "Rejoice!"??

Tears are so close to the surface all the time and helpful friends who want to "keep me busy" don't seem to really understand that I need to embrace my grief.  I am afraid of letting go of the sadness and losing the deep love connection I had.   

Instead of entering into the Rejoice of Christmas, I long for the sorrow of Lent.  I beg you Lord, show me how the two are connected.  I ponder the name Emmanuel and know that it means "God with us."  With us.  With me in this world, in this sorrow.  If I look beyond my pain, I know that you, too, suffered so much in this world.  I never understood so clearly before that Emmanuel is what your nativity is really about.  You are in my world, in my pain.  

Thank you, Lord, for the loved one you blessed my life with.  Grant me now in my grief, a peace.  Give me a comfort that might not make the tears go away, but that lets me feel your presence as you take up a place deep in my heart, with me.  

Thanks for sending this, Jen.  This is from God.  

A visit to the bench

Tomorrow is Julia's actual birthday but today, we wanted to go visit Julia's bench.  The plaque is on the bench now and we have been anxious to go see it.  It was a rainy day and was supposed to rain much of the day so we weren't sure how much we'd be able to hang out by the bench.  But we decided to brave it, and go anyway.  However, shortly after we arrived at the bench, the clouds literally started to part and there was blue sky above and no rain!  That was a gift from God.  The bench is in a perfect location overlooking a stream 100 yards below.  It is such a peaceful place.  Bob and I sat on the bench and Mattie enjoyed exploring around collecting leaves and such.  Also, while we were there hanging out, Linda Brosemle walked by!  Linda and Don Brosemle are my friend Christa's parents who work at Mt. Hermon.  They were key in getting the permission to put the bench where it is.  That was another God appointment, I believe.  I was so glad for her to see us enjoying the bench and to get the opportunity to express again our appreciation.

After we got home and had some dinner, Mattie wanted to make some cupcakes for Julia.  We used a box mix and Mattie just about made them all by herself with no help!  She read the box directions, poured the water and oil into measuring cups and poured them into the bowl along with the mix.  She got out the 3 eggs needed and she cracked every one herself into to bowl without getting any shells in there.  Then she used the hand mixer all by herself and mixed the batter.  She put the muffin papers into  the muffin tins.  Bob scooped the batter into the tins and Mattie worked on "cleaning" (licking) up the beaters and remaining batter in the bowl.  She did an effective job.  We will be bringing the cupcakes to lunch tomorrow after church where some friends will gather to celebrate Julia's birthday.

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.