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.

Mattie started Kindergarten today...

Today was Mattie's first day of Kindergarten.  Overall, I was very excited.  But there was this darkish cloud that hung over the day.  My Facebook status sums it up: Today is Mattie's first day of kindergarten. I am celebrating because it's my first child to go to kindergarten. I am grieving because it's my last child to go to kindergarten.  

After all the parents dropped off their kids, the principal did a welcome-hoorah speech for all the parents in the cafeteria.  She welcomed all new and returning families.  Then she said something like, "For all you kindergarten parents, dropping your child off at kindergarten is one of the hardest things you'll ever have to do.... blah, blah, blah..." Then she went on to talk about how they're in such good hands, yada, yada, yada.  She meant well.  However, Bob and I turned to each other at that point and rolled our eyes.  Really?!?  If dropping your kid off at kindergarten is one of the hardest things you've ever had to do as a parent, then you damn well better be thanking God for your good fortune!  I thought to myself, yah, whatever.   Then there's dealing with the questions from other well-meaning parents... "Is Mattie your first?", "Do you have any other children?"  And so it goes.  I just smile and say, "Yep, she's our only one."  It sucks.  

But... as there always is with our Julia story... there is this other side to things.  I also thought to myself today, "What if I had Julia with me today?"  My day would have looked very different.  I wondered what kinds of stuff I would have been dealing with if Julia were alive.  After I dropped Mattie off, my time was free and my own.  It was nice.

I am always living in this tension.  

However, I still grieve that I only have one child.  I never wanted only one.  I grieve that our path was so difficult and that so many other people seem to be able to pop out healthy typical children with no problems.  And I grieve Julia.  I grieve that Mattie misses her and wishes we would have another baby.  I just don't know if we ever will have it in us to try again or even if we ever should.  

Sweet Julia would have been 9 months old today.

We are celebrating Julia's birthday up at Lake Tahoe today.  We arrived yesterday and will drive home tomorrow.  We are renting a condo from some close friends. There aren't many places that make Bob and I happier than being here in the forest and mountains.  Mattie really enjoys it, too.  It's been a nice day, overall.   We are looking to maybe buy a cabin up here so we spent the morning looking at some places for sale.  (We started looking at that possibility after Julia died.  It's been a dream we've had since we got married but we never really expected to make it a reality.  However, we decided after Julia died that it would be a good time to look into pursuing some dreams together.  So we're seeing what happens.) We grabbed a huge sandwich to share at the Tahoma market and had a picnic on Chambers beach were Mattie really enjoyed tossing rocks into a shallow pool next to the lake.  We then drove back to the condo, changed into swimsuits, gathered up beach supplies and drove back down to the lake for the afternoon.  It's been warm today with scattered clouds and a few sprinkles here and there.  We grabbed dinner out before returning to the condo for the night. 

Coming here was on my bucket list of places I wanted to take Julia before she died.  That was when we thought we had 6 months to a year, not a mere 3 more weeks.  I wanted Julia to feel what snow felt like.  I'm sure that God had given her more amazing experiences in Heaven than touching snow, but I am not experiencing it with her.  I am separated from her.   Mattie came in our bedroom this morning to snuggle.  I told Mattie it was Julia's 9 month birthday today.  Mattie's still trying to figure out the abstract time perspective.  She asked me, "Is Julia 9 years old today?" "No, Mattie" I said, "Julia would have been 9 months old."  "Is that still zero?" she asked me.  "Yes, that's still zero."  I said.  Then she asked me, "Did Julia come here?" So I asked to remember if she ever remembered coming to Tahoe with Julia.  She didn't think so and I confirmed that for her. We both agreed, however, that she would have liked it a lot.  Tonight, when I was tucking Mattie in bed, I asked her what she liked best about Julia.  She responded that she liked looking at her.  We then agreed that I had the 2 cutest girls ever to live. 

I wore my Julia ring today, as I will every day, next to my Mattie ring.  It makes me happy to have it.  I also wore the necklace Maggie gave me with the photo of Mattie's and Julia's hands on it.  It is so nice to have these physical things to touch and have with me at all times.  It is something I can touch since I can't touch her.  I have been having some moments of sadness lately when reflecting about Julia.  The night before we went to see her bench a week ago I was just inundated with images and memories of Julia in the hospital.   I was struck with such grief thinking about her suffering.  I was also attacked with feelings of sadness and regret thinking that I had not spent enough time with her when she was in the hospital.  The thought of her alone in that big hospital room in that big bed hooked up to all those wires without her mommy was almost more than I could bear.  I know that these are not thoughts from God (the ones of failure and discouragement) and that I did the best I could at the time.  I also know that Julia was cared for very very well at Lucile Packard.  But even as I write this, it just makes me so sad thinking of her laying there without me next to her.  It makes tears come to my eyes.  I guess I just never thought our time together would be so short.  I prioritized Mattie so that her life would remain as stable and normal as possible as Bob and I were dealing with crisis.  I still think I made the right decision prioritizing Mattie.  It was just a horrible situation.  No one should have to be torn between her kids. I just had to trust God then and I have to continue to trust Him now that He was holding her every moment I wasn't and He is still holding her now even when I can't. 

Happy 9 months, my sweet orange-headed Julia.  You are still thought of and still loved greatly.