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.

The Julia bench!

Some of you reading this have been a part of the Julia bench project for the past 6 months.  For some of you, this will be new news.  So let me tell you the story about this wonderful and amazing gift that has been many months in the making and given to us in honor of our sweet Julia Alexandra Brown.

The backstory:
Mt. Hermon is a beautiful Christian conference ground that is nestled in the Santa Cruz mountains.  It consists of 3 different "camps" and is a total 440 acres.  It is huge.  Both Bob and I have been on various retreats there over the years as both singles and as a married couple.  The Ponderosa camp is where I took my 6th graders for science camp every year.  Surrounded by acres of redwood forest, it has been a place of peace, refuge, and a place to connect with God for both Bob and me.  In the Julia story, it has been a place of escape and retreat for us.  We were able to stay there for a weekend not long after getting the Down syndrome diagnosis when I was pregnant with Julia.  We were in the pit of despair at that point and just need to get away.  For both Bob and me, the forest is as close to Heaven as we can get on earth.  We spent a lot of time walking the trails and sitting by a stream just being quiet.  It was such a hard time in our lives but so therapeutic to be in the forest.  Then, just days after Julia died, we were given the opportunity to go spend a weekend at Mt. Hermon again in a cabin.  It was such a gift!  Again, we were able run away to the mountains and the forest to have the space to process... or just start the process.  We had an amazing view of nothing but trees outside our window.  It was glorious.  Here is a photo of it I took that weekend:

It was so wonderful to have a place to be alone.  A place with no expectations.  That weekend was wonderful but a bit out of the twilight zone.  I just remember walking around the conference grounds and Santa Cruz that weekend with everyone living their "normal" seemingly happy lives and feeling like I was walking in total slow motion.  I was living a nightmare and no one around me knew it.  I was just so thankful to get back to our cabin and be able to just stare out those magnificent windows a those majestic trees.

After Julia died, Bob and I had so many decisions to make that we never thought we'd ever have to make... what do we do with Julia's body?  Bury? Cremate? Do we get a plot? or a niche in a columbarium?  We just didn't feel like we wanted Julia to be stuck in some random cemetery here in the Bay Area.  Though we don't see ourselves moving anytime soon, we don't know what the future will hold for us.  And we also didn't feel like a cemetery was the type of place we'd like to go and sit to remember Julia.  After our time at Mt. Hermon after Julia died, we talked about looking into what it would take to get a bench made at Mt. Hermon somewhere on the conference grounds.  That seemed to fit much better as a place to go to remember Julia.  A place that is peaceful and is as beautiful as she was.  But we didn't know if one could even do that kind of thing.  Several days after returning from that weekend, I mentioned my thoughts to my dear friend, Christa.  Her dad works for Mt. Hermon and I thought maybe she could find out from him if it was possible or what it would take to have a bench made.  She said she'd look into it.

The bench in the making... only we didn't know about it!
Well, not only did Christa look into it, but she talked to her dad and she started a secret mulit-month project that involved her dad getting permission at Mt. Hermon as well as reaching out to many friends to collect money for a Julia bench.  I had no idea she was working on this project.  After Julia died, we were thrown back into the craziness of "life" and we put the Julia bench project aside figuring we'd get around to it later.   So almost 6 months after Julia passed away, enough money had been collected and all the various permissions were granted at Mt. Hermon as well as someone was found to build the bench.  It was quite an undertaking!  In fact, her dad was able to get it approved for the bench to be put on the trail that is directly under the cabin that we stayed at after Julia died.  Incredible!  So it was at that time that Christa was *finally* able to tell me this secret she'd been keeping for 6 *long* months!  She was about to burst! I was blown away!  I could not believe it.  It was exactly what we had hoped for.  I could not believe how blessed we were to have this gift that involved so many people.  But I really have Christa and her parents to thank.  They are the ones who really made it happen!

Seeing the bench (3 days before the 6-month mark of Julia's death):
The bench was completed and we needed a chance to go see it.  My mom was in town and so we thought it would be nice to go see it while she was here.  So today we drove over the hill to Santa Cruz for the morning and then after lunch drove up to Mt. Hermon to see the bench.  We were able to find it right away.  It is beautifully made out of thick sturdy wood that will last a long long time.  In the next few weeks a plaque will be put on it with Julia's name, her birth and death date, and the reference to Jeremiah 1:5.  It was so special.  When we first walked down to see it, a couple was sitting on it.  That made me happy, too, to think about countless people who will stop and read the plaque, sit and rest, and take in the beauty before them.  They didn't know Julia, but they will think about her for just that moment when they read the plaque.  By seeing that, they will know she was loved and that she was a very special little girl.  She will not be forgotten.  That makes me very happy and thankful.  I look forward to spending some time alone on the bench at least once a year to reflect on my sweet little girl.  I am so happy that the bench is where I can go, surrounded by the trees and by God.

Here are some pictures:

Isn't it beautiful?!

This is the view from the bench.

Thank you to all who helped make the Julia bench a reality.  Many have contributed money to this gift of love for our family.  But again, I especially thank Christa and her parents, Don and Linda Brosemle for pursuing this and loving us so much through it. 

Julia would have been 8 months today...

It's hard to believe she would have been 8 months old today.  I wonder what she would be like.  I wonder what milestones she would have reached. 

I saw a young man with Down syndrome today at a mall.  It brought up a whole mixture of feelings.  I live with both grief and relief concerning the death of Julia and it makes me feel very conflicted.  I feel guilt because of this.  My therapist tells me this is very normal but I don't like it one bit.  I miss my baby.  But the life she had and potentially the life she would have had was a difficult one.  I would not want that for her or our family.  It's messy and that's all there is to it.  And it is sad.  It's just very sad.  But only sad for us left here on Earth.  Julia is in Heaven.  She is healed and she is happy.  So I hold on to that.  And I remain sad and confused and conflicted and relieved and sad again.  That's the way it is and that is the way it will be. The 18th will come and the 18th will go and I will remember her.  One day I will forget how old she would have been.  One day the 18th will come and go and I will not remember until the 19th or the 20th.  I will feel weird and I will feel guilty about it.  But that's okay.  That's just the way it goes.  It would not have been this way in Eden.  There wouldn't have been dates to remember and grieve.  One day... one day not soon enough, we'll all be together reunited in Heaven.  That will be an amazing day.  Until that great day, it is my job to try to live life to the fullest, to love others to the fullest, to appreciate what God had given me here on Earth, and to know and love God more and more.  Not easy tasks.

My Julia ring...

It's been a few weeks in the making, but I got my Julia ring today from a friend whose family has a jewelry business.  I am so excited to have it.  I photographed it with my "Mattie ring."  I plan to wear the rings as a set on my right ring finger.  I had thought about the design of this ring shortly after Julia passed away.  I am thankful to Matt who helped make it a reality.  I have never been a big jewelry person, but since I had my "Mattie ring", I really wanted a ring for Julia that I could wear every day, maybe for the rest of my life, to remind me of her.  I wanted something tangible I could touch when I could not touch her.  To understand my desire for such a ring, it helps to know the story of both rings.

The significance of the rings:
The Mattie ring (thin ring with the blue sapphire): 
Originally, this is the ring that Bob used to propose to me.  It held the diamond that is in my wedding ring.  This ring belonged to his mother, Sally.   It was the ring Bob's dad used to propose to his mother and the ring she wore for close to 20 years before his dad passed away from cancer in 1985.  Sally eventually remarried and so when Bob was going to propose, she offered the ring to Bob to give to me.  I loved the ring and its history and significance and was honored to wear it.  But as you can see, it is pretty dainty and I was worried about that.  So Bob and I decided to take the diamond out of the ring and design our own ring for me to wear as my wedding ring.  (Matt also made my wedding ring!)  Then 6 months after we were married, we decided to put a stone in the original ring so it could be worn.  No use having it just sit in a box somewhere.  The question that remained was, what stone?  My birthstone is a diamond.  I already had one of those on my left hand so I certainly didn't want two.  We went to a jewelry store and looked at several.  I finally decided on this Carolina Sapphire.  It is slightly lighter than a true sapphire.  I picked it because I thought that blue, especially this lighter blue, was the most versatile color.  That's it.  The stone chosen was not particularly significant... until our daughter Mattie was born.  She was supposed to be born in October but was born 3 weeks early in September.  And amazingly, the sapphire is the September birthstone!  It was at that point, I began wearing that ring most every day.  I would say that I wore "Bob" on my left and and "Mattie" on my right. 

The Julia ring:
Thicker band of gold with 3 small topaz stones embedded in it. 

Even before Julia was born, I had contemplated a ring for her.  I had my Mattie ring.  So shouldn't I have a ring for Julia?  Of course, jewelry is expensive, so it was only something I jokingly brought up to Bob from time to time.  However, once she passed away, I decided this was something I really wanted to have and Bob was in agreement and very supportive of making it happen.  Julia was born in November.  November's birthstone is certainly not my favorite, topaz.  So I didn't want a big topaz stone to wear.  And I had my Mattie ring.  I wanted to be able to wear the rings at the same time.  However, I didn't think I wanted another ring on another finger.  That would be too many rings.  I'm not generally a glitzy person.  Since my Mattie ring is a solitaire engagement ring, I thought it only made sense to make a type of wedding band so that the two could be worn as a set.  Then I thought about putting a topaz stone embedded in the ring so it would be subtle.  However, just one small stone seemed a bit too subtle.  I'm not sure what thought came first, but I realized that if I put 3 stones in the ring, it could be symbolic of Julia's Down syndrome, trisomy 21... 2 stones and then 1 for 21.  And 3 stones just seemed the right balance.  I told my mom about my idea of the ring.  She was able to take the significance of the 3 stones to an even deeper level.  She pointed out that both my miscarriages were in November and so therefore, each topaz stone represents each baby I have in Heaven waiting for me.  Wow, perfect.  Three stones it is.  It is eerie, but my 1st trimester miscarriage (before Mattie), my 2nd trimester miscarriage (after Mattie), and Julia's birthday are all within about 10 days of each other.  This is not only my Julia ring, but the ring for my 2 other babies whom I have yet to meet. 

Mattie draws a picture of our family

We were at a Cracker Barrel in Florida having lunch and on the kids' menu, there was a space to draw a picture of your family.  Mattie drew a picture that included Mommy, Daddy, Mattie, and Julia.  I wish I took a photo of it to post on the blog.  It was very cute.  Instead of stick figure of Julia, she made an oval with a head on top as if Julia was wrapped in a blanket. 

Julia is on an airplane in Heaven...

Yesterday we flew to Jacksonville, Florida.  As we were taking off from SFO, Mattie looks at me and says, "I bet Julia is having fun flying today.  I think she is on an airplane in Heaven."  I told her I bet she was right and that I wished Julia was here on the plane with us. 

Formula

I had 6 cans of formula left over from Julia.  It was "prescribed" to her so they sent me 6 cans at once.  I was trying to decide what to do with it.  I could give it away to friends having babies.  That's what I did with Julia's disposable diapers.  However, I felt like I wanted to give the formula to women in need.  There is a house in East Palo Alto that provides safe Christ centered housing and support services to teen mothers and children ages 13-22.  It is their mission to encourage academic, vocational, parenting, life skill, and social development.  That sounded perfect.  So today, Mattie and I drove up to EPA together to drop off the formula.  I also donated a couple of baby bottles as well.  I told Mattie what we were doing and that the formula would help other babies who needed it.  I was glad Mattie could be a part of it.  I really have a heart's desire to live more missionally.  I want a lifestyle of serving others.  However, I'm not always very good about making it happen.   I don't make it a big enough priority.  It is much easier to live in my bubble.  So one step at a time.  How did it feel dropping off the formula today?  It felt bittersweet.  The formula was one of the last things in the house that was Julia's, besides the clothes and such that I saved.  I was sad.  But I was also happy that the formula would nourish other babies who really needed it.  That made me happy. 

"Mommy, your stomach is big."

Mattie has been telling me lately that she thinks my stomach is big.  (Thanks for the complement, Mattie!)  I really didn't get why she was telling me this.  I didn't think my tummy was that much bigger than normal.  I certainly could lose a little more of my post-baby belly, but it's not that bad. (So I thought.) Well, this morning, as I was snuggling with her in her bed, she told me again that my tummy was big.  This time I responded with, "You know, Mattie, I actually don't want my tummy to be big.  Do you really think my tummy is that big?"  Then the truth came out.  "Well," she said, "if your tummy is big then it means my wish came true and that there is a baby in your tummy and I will get a baby sister." OHHH!  Now it is very clear.  She *wants* my tummy to big because she *wants* there to be a baby in it.  Sigh.  It was like a dagger in my heart.   Her "wish come true?"  If she only understood how I wanted her to have a brother or sister.  I am sad for her... and for me, too. 

Julia would have been 7 months old today

Every 18th of each month is a significant day in remembering how old Julia would have been.  Today, we would have celebrated her being 7 months old.  I sometimes try to imagine what she would have looked like.  I think she would have been perfectly chubby with fair skin and bright orange hair.  Even though Bob, Mattie, and I all have dominant brown eyes, I am pretty confident her eyes were going to be blue.  I think she would have been smiley and flirty.  I think she would have captivated the attention of anyone who crossed her path.  I think she would have been feisty and yet mellow at the same time.  One thing I know, is that she would have been beautiful because beautiful is what she was.  She was a cute baby (and it's not just me who said so!) 

I was feeling particularly introspective today because today was the first day of VBS at my old church, Highway.  It was during the week of VBS one year ago, specifically the Wednesday afternoon of VBS, when I found out that Julia had a 1 in 3 chance of having Down syndrome.  On that Wednesday, I had only received test results of a blood test.  I had Mattie with me because it was going to be a quick heartbeat test.  I was only 16 weeks along.  I remember "holding it together" and then after getting home collapsing in sobs on the family room couch with Mattie not understanding what was wrong with her mommy.  I was crushed.  After I just lost a baby?  How much more could go "wrong?"  God wouldn't do this to me, would He?  However, I was hanging on to hope that the test was false (or hopeful I would beat the 1 in 3 odds.)  Plenty of people the next day at VBS told me to ignore those "stupid" tests since so many times people get prenatal testing with a worrisome test result and then they get all stressed out for nothing when further testing confirms that everything is okay.  And yah, that does happen a fair amount and is why many refuse prenatal testing.  I had that experience (sort of) just 6 months previous when my blood test came out with a 1 in 3 chance that my baby had trisomy 18, a chromosomal abnormality that is generally not compatible with life.  However, unlike many, my baby had died and I didn't know it and after the amnio, it showed that everything was actually chromosomally normal.  The baby didn't have trisomy 18.  I had "beaten" the 1 in 3 odds, but I had still lost my baby at 18 weeks.  Friday of VBS week I had the much anticipated ultrasound that would be able to look for trisomy 21 markers.  It was during that ultrasound that they were able to detect that Julia (though we didn't know her name then) had a heart defect and that was very common for babies with Down syndrome.  I got an amniocentesis that day and by Monday had the rush (FISH) results that confirmed trisomy 21.  And then our world turned upside down.  (I had no idea what crazy roller coaster ride and process was in front of me!)  So walking into VBS today just brought all of that back and compounded with Julia's birthday, I was on the edge of tears.  Fortunately, my good friend Christa and I were scheduled to go for a walk and run to the grocery store while the kids were in VBS.  Christa has walked every step with me and so it was good to be with her.  In fact, she had "randomly" called me that dreaded afternoon I got the "1 in 3" test results a year ago wanting to come over for a playdate just as I was unlocking my front door and about ready to collapse.  "Oh yes! Please, Christa!  I need you!" is all I had to say and in 10 minutes she walked through my door.  God provided a dear friend just when I needed her most.  God provided again today as He has countless other times.  I may not be able to touch God or see Him... but He has touched me through so many people that He placed in my life at just the right time.  Christa was able to cheer me up today.  Thank you, God. 

The rest of the day was fairly uneventful and mellow.  It was nice.  I was a bit emotionally drained (and probably a bit pathetically tired from my walk.)  Mattie was pretty mellow as well.  So I end the day not near as sad as I started.  But, as I often do, I still end the day thinking of Julia.

Happy 7 months, my sweet baby girl.  I still really really miss you and I always will.   A year ago I was scared for you to be born.  Now, I just miss holding you and gazing into those deep eyes of yours.  I love you... forever.

But wait, I have TWO redheads!

Mattie's hair is an almost daily topic of conversation almost *anywhere* I go.  Someone will comment on what a beautiful color it is (it is truly amazing) and usually immediately ask where the "red" came from.  If I had a dollar for every time I talked about Mattie's hair to a stranger, I'd be rich.  Seriously, I would.  What is even more amazing, however, is that God gave us TWO redheads!  What are the odds of 2 brunettes having 2 redheaded children?  After Julia died and people ask about Mattie's hair, I want so badly to tell them that I actually got 2 redheads!  That if they think that Mattie's hair is amazing, they should have seen my other daughter.  This happened today at the pool which is why I decided to write about it.  But it has happened many times.  I just wish people could have seen my other beautiful daughter with red hair.  I'd like to tell them about her, but it is not a comfortable topic for most people, the death of a child, so I don't.  I just smile and say, "Oh yes, it's amazing we got a redhead," and then think to myself, "You have no idea how lucky we were to get two... but our other one died."

A visit to my OBGyn clinic

 

I had to go to my OBGyn clinic today to get my TB test so that I can volunteer at Mattie’s school next year.  I had not been there since I was transferred to Stanford at 32 weeks pregnant.  It was more difficult than I expected.  First of all, there were pregnant women everywhere.  It is wrong to assume that they are all glowing and happy in their pregnancy, but that is the way it feels from my perspective.  Pregnancy is supposed to be an exciting and joyous thing (well, maybe not the pains that come with being pregnant, but the expectation of the sweet bundle at the end- the dreams of the future.)  Then there was the rush of feelings that brought me back in a flash to the past.  It was like I was experiencing the 3 years of disappointing infertility, the devastation of finding out that my 18 week fetus was dead, the test results that my next baby had a 1 and 3 chance of having Down syndrome, and the confirmation of that information… all at once.  It was the sights, the smells, everything. There is one particular examination room where I found out about both my 2^nd trimester miscarriage as well as the test results for Down syndrome.  Fortunately, I was not put in that one.  But I can sure visualize it!  I don’t know if I’m going to be able to continue to go to that clinic.  I really like my doctor, but I’m just not sure I want to deal with all that emotion and past every time I walk in… especially if I never have any more children to create a positive association with the place.  I was on the edge of tears the whole time I was there.  My doctor came in to chat with me and check in, which was really nice of him.  He didn’t need to see me, but he saw I was there and made a point to come in.  I told him that it was hard for me to be there and that I missed Julia.  He was very compassionate and understanding.   I left the clinic okay, but still a bit sad.  …Sigh… on goes the grieving process.

4 months since Julia's death

Yesterday was the 4-month mark of Julia's death.  It was a busy day so I didn't feel the impact too significantly.  I guess that's good.  Mattie had school.  Bob and I had counseling. After school, Mattie and I came home for a bit for lunch and for some down time.  Then we met Christa, Josh, and Matthew at the swimming pool.  After the swim pool, we went over to Karie's to see Claire and baby Collette.  Karen Parker was there visiting with her almost 4-month old Nathan.  Sometimes I get sad around babies. (Poor Karie, I cried the first time I met Collette.) But I wasn't sad yesterday.  So that was nice.  Who knows where I'll be in a day, week, or month, but at least I was fine yesterday.  I'll take it.

Mattie talks about feeling jealous.

As part of our nightly ritual, Mattie and I pick 4 to 5 Bible verses out of her "treasure box" (on 3X5 cards) and recite them.  With minimal prompts, Mattie now knows probably 15 verses.  It is quite amazing.  Tonight, we were going over John 11:25 (I use a contemporary version of the Bible that is easy for Mattie to understand.)  It says, "Jesus said to her, 'I am the resurrection and the life.  The one who believes in me will have life even if they die.'"  While going over that verse, Mattie covered up the last part of the verse with her hand and would not say the "even if they die" part.  So I inquired about it.  I asked her if she didn't like the part that said, "even if they die."  I asked her if it made her think of Julia and if it made her sad.  Generally, it is very difficult to talk to Mattie about feelings.  I don't know how much of it is a 4 1/2 year old developmental thing and how much of it is just Mattie.  I have to really dig to get her to say much.  She kind of said it made her sad.  But she was very clear about one thing.  She had a bit of anger in her voice and she said that sometimes she feels jealous of other kids who have baby sisters and brother because she wants a baby sister and she wants one right now!  She repeated the part of being jealous several times in our conversation.  I told her that I was sorry that she didn't have a brother or sister and that I really really wanted her to have one (she has no idea how badly I wanted her to have one.)  I asked her if she thought that Mommy and Daddy wanted to give her a brother or sister.  She nodded.  I was glad that she knows deep inside that it was our desire to have another baby.  I wasn't exactly sure what to say.  The bottom line is that it is very complicated.  I did tell her that I really hoped she would share with me next time she was feeling that way and that I wanted to hear about her feelings.  I told her that God wants to hear about her feelings, too and that she could talk to Him about anything she was feeling and that He would understand.  I told her I that totally understood how she felt and that sometimes I feel jealous of other mommies that lots of kids.  Before long, Mattie was on to the next topic.  Mattie hasn't seen the child psychologist since before Julia died.  It has been on my to-do list for weeks.  I need to call and just take Mattie to check in.  Mattie seems to be processing Julia's death amazingly well.  We talk about Julia and we certainly haven't tried to sweep things under the carpet.  But I am not a child psychologist and I don't want to miss something or not help Mattie process and grieve in the healthiest way possible.  If anything, I want Mattie to learn how to talk about feelings openly.  I think I will make a call tomorrow.  In the meantime, I have to throw my hands up and look up at the sky and ask God to take care of Mattie and our family.  There certainly is a lot of life I just don't get.  I'll continue to put one step in front of the other and trust that God is beside me and beside Mattie, too. 

Dancing...

Today, Mattie had her little dance recital.  Her class of 4-year-olds did a tap dancing number.  (Each class did one dance.) It was one of the most adorable and hilarious things I've ever seen.  (I can't help myself... here's a photo:)

During Mattie's dance, I was only thinking about trying to keep the camera still through the whole dance as tears streamed down my cheeks from laughing so much.  However, as I was watching some of the other dances, my mind drifted to thinking of Julia.  I wondered if Julia would have been able to take a dance class and perform in a recital.  I imagined what it would be like to have my little girl with Down syndrome up on that stage.  I also pondered what other people would think about her on the stage.  For some, it might have been uncomfortable.  But I imagined her stealing the show with a huge smile and trying so hard to do her best.  And then this afternoon, coincidentally, I got an email from the Silicon Valley Down Syndrome Network from a woman who posted about her son, age 5 with Down syndrome, who just completed his first dance recital today.  She was so proud of him because he overcame his nervousness and fear and danced his dance remembering all his steps without even needing to look at the teacher.  Then at the end, he took a huge bow and smiled a huge smile.  What an amazing moment for her son, for her, for her family, and for every single person in that room who watched her son overcome the odds and show the world what he could do!  I look forward to the day when I get to see Julia dance when I join her in Heaven.  We'll dance together and it will be amazing!  

Thoughts on Julia... thoughts on pain.

On May 18th, Julia would have celebrated her 6 month birthday.  Mattie and I were flying to Seattle that day to spend a week with my parents.  Having a trip to pack and plan for as well as a plane to catch definitely helped distract me from any melancholy feelings on Julia's birthday.  We just got back today.  Mattie and I had a great time up there with my family.  I was hoping to do a bunch of blogging up there.  But the combination of my parents' horrible internet connection and my many late night conversations with my mom (which I wouldn't trade for anything) meant no blogging for me last week.  So here I am at home tonight and getting a moment to "catch up" a bit after a dreadful time getting Mattie to bed.  It was seriously horrible.  So bad that Bob is in bed and I'm out here in the living room decompressing from the whole thing (and it's only 9:30pm).  Mattie can really struggle with transitions like coming back from a trip or being somewhere new.  (I think she's probably pretty typical of a lot of 4 year olds... but not all 4 year olds are half as stubborn and vocal and dramatic as she is.  She can take things to a whole new level.  But I digress...) 

How am I doing 3+ months after Julia died?  In some ways okay, but other ways "worse."  I am more sad now than I was right after she died.  It's a lot of different things that contribute to that.  There are a LOT of babies being born right now in my circle of friends and that is just a constant reminder of the baby I don't have.   Life is back to "normal" with just Mattie.  Life with just Mattie is mostly what we've known.  And there is something about that "normal-ness" that just reveals even more to me that life was not supposed to be "back to normal."  My life was supposed to be different: a life with 2 children, a life with a child with Down syndrome.  Believe me when I say that I was scared of what my atypical life was going to look like with a child with Down syndrome.  But that's what I was gearing up for.  And in some ways, Julia's death brings a bit of relief from that fear.  (Though I am all too aware that life is indeed uncertain and just because Mattie doesn't have Down syndrome and our family is all "healthy" today, doesn't mean that we are exempt from more pain and hardship in the future!)  But the bottom line is that I miss HER!  My life without her is *not* normal. I miss holding her and stroking her soft read hair and gazing into her eyes.  I miss watching Mattie love her with a softness and tenderness that I don't get to see in Mattie very often.  I miss watching Bob love her and care for her and interact with her.  I loved what Julia brought out in each of us.  She was good for our family in many unexpected ways.  And now she is gone.  At our couples' Bible study the other night, I was venting and emoting during our sharing time reflecting on the past 4 years.  After 4 years: 1 year of "trying" the old fashioned way, 3 months on Clomid, 3 months on Clomid with IUIs (artificial insemination), 3 rounds of injectible fertility medication with IUIs, 2 pregnancies, 1 miscarriage at 18 weeks with no explanation of death, 1 birth, and 1 death I feel like I haven't progressed at all... I am exactly back where I started... with ONE child.  I only feel like I've been through the war. THAT is frustrating.  It's not just that I lost a child... but I can't just go "make" another if we wanted one.  Not that I could replace Julia.  I can't help but feel so jealous of women who just "plan" to get pregnant and do.  Unless you have experienced the pain of infertility, you have no idea the toll it takes and you, your husband, your marriage, your life.   And after what we went through with Julia, I'm not sure Bob and I have the guts to try again.  I'm not sure even if we had the guts, if we even should.  But we're not going to think about that for another 9 months or so.  I do know that I am forever changed from all that... some for the worse, probably, but I would say character-wise, more for better, I guess.  A guy in our couple's Bible study commented that we indeed have progressed- maybe not in making a baby, but in our character and relationship with God.  And he's right about that, I suppose.  I believe that God doesn't waste pain.  In a sick sort of way, pain is too precious to waste.  Pain in our lives is to be used by God.   Pain is kind of like a deep cut.  We have 2 options. We can try to mend the cut ourselves or ignore it and the cut will either become horribly infected and we end up in more pain than we started or the cut develops a tough outer scar that is a daily reminder of that wound.  Or we can bring our deep wound to a physician who will clean out the deep cut (this will be very painful at the time but only for a short time) and who will stitch the cut together so that it heals properly.  We will always remember the cut was there, but only a great physician can help it heal properly.  God is our Great Physician.  Only He can heal us in a way that is most healthy.  However, it is up to us to bring our pain and our deep wounds to Him.  We have to be willing for Him to work on our pain in His way and that might mean experiencing more pain on the road to healing.  Too many times, people try to ignore their wounds or stuff them away.  However, over time a large scar can form on their heart and harden it.  I also feel that in the process of really healing our deep wounds, that God must from time to time reopen them and have us deal with them again.  Or He has us reopen our wounds so that we can reach out and help someone else who is experience similar pain.  All in all, if we ultimately give God our pain, our wounds, and our hearts, He will use that for our ultimate good and for the good of others.  He will bring glory to Himself through it.  Isn't that exactly what He did on the cross with Jesus?

Mommy, where did you put Julia's bones?

Mattie, out of nowhere mind you, asked me this afternoon, "Mommy, where did you put Julia's bones?"  I was certainly taken off guard by this question!  I responded, "Are you asking because people sometimes bury people when they die and you want to know what happened to Julia's bones?"  She said, "Yes."  I was not feeling quite ready to answer this question and I certainly didn't really want to answer without talking to Bob about it.  So I told her that I wanted to talk more about it but I'd like to wait and talk about it all together when Daddy got home.  She seemed okay with that.  So after dinner, Mattie was occupied with the iPad and so I summoned Bob to the back bedroom to tell him what Mattie asked today.  He was equally taken off guard.  We decided we would wait until Mattie brought it up again since it was close to bedtime for Mattie.  We're still not totally certain how to answer her question... we cremated Julia and we're not sure how to explain cremation to Mattie.  But we're thinking about it and have talked through an acceptable answer for now.  Any advice is welcomed!  I'll keep you posted as to how we answered it when we finally do.

"The Busiest Day in Heaven"

This is a poem my friend Christina sent me yesterday for mother's day.

“The Busiest Day In Heaven”

It’s the busiest day in Heaven
I’m planning a big surprise
To let you know I love you
And that no one ever dies

Even though your down below
And I am up above
I’m sending you my wishes
And all my angel love

It’s really quite exciting
To plan this big event
For lots of gifts will come your way
And all are Heaven sent

First I’ll take a bubble bath-
My splashes might cause some rain
But knowing all the fun I’m having
Will help to ease your pain

Next I’ll get some pictures
In my halo and gown
So when you get to Heaven
You can show me all around

I have color crayons in Heaven
And I will draw some stars so bright
And place them in the sky today
For you to see tonight

Then Jesus will have story time
And I will sit upon his lap
He’ll tell me all about you
Just before I nap

I’ll awake full of energy
And play a game or two
Before I finish sending
All my love to you

After snack I’ll write a song
For all the birds to sing
And know I’ve made you happy
With all the joy it brings

At night time I’ll be tired
But I’ll still hold you tight
My arms will wrap around you
And keep you through the night

And when you finally slumber
I will kneel and pray
Asking God to bless you
On this special Mothers Day

Love,
Your Little angel

Eggs

We were all sitting around eating eggs for breakfast this morning (Mattie had green scrambled eggs) and Mattie says:

"Mommy, I like eating eggs, you like eating eggs.  Daddy! You like eating eggs.  And I think Julia is eating eggs in Heaven.  I think she likes eggs.  We are all eating eggs."

Bob says, "That's right Mattie, I bet Julia does like eating eggs in Heaven."

Three months since she went to Heaven...

4:45PM.  February 8, 2012.  Julia took her last breath.  I remember it so vividly.  Three months.  It seems like yesterday and it seems like an eternity.  There has been a lot to process.  My perspective on life will forever be changed.  In fact, since her death I have been so much more sensitive to shows on TV.  There was a Law and Order show that showed someone in a body bag that had been dead a day or so... it made me cry.  Then there was a House episode just recently where this little boy stopped breathing and the mom was totally panicking... it also made me cry.  I know first hand what both of those things look like.  I saw my daughter take her last breath and I saw what she looked like after being dead 5 hours and her body starting to stiffen (sorry for the gory details... I hope I am not making anyone feel too uncomfortable.  However, that was my reality.)  Since her death, I would not say that life has "moved on" as much as I would say that life has "carried on."  I have the day to day tasks to do and a little 4 year old to love and parent that has more energy than the Energizer bunny.  I have more than my share of "distraction," that's for sure.  Right after Julia died, I felt a bit of relief.  It's so hard to watch your baby (or anyone) struggle to live.  And then we were thrown into planning the memorial.  It was good to have such a big project to help fill the immediate void.  It was also healing.  After that, Bob and I set our focus on each other and on our family of 3 as we worked on picking up the pieces of our lives.  We tried to fill our lives with some fun (it had been a while) and we started to look to the future and started to dream again, to plan again, to have hope again.  It felt good to do that.  Last week, however, I dipped into a valley.  What a strange journey grief is.  I found myself feeling rather depressed and really sad about Julia.  It was a hard week.  I missed her.  It was like all the dust had settled and the empty space the belonged to Julia was more apparent.  I felt her absence.  I saw other babies and it reminded me of the baby I didn't have.  They baby I was supposed to have.  The baby I no longer got to hold, her skin that I no longer got to kiss, the soft hair that I no longer got to touch or rub against my cheek.  Bob was also gone on a business trip last week.  So I found myself with time alone to think and reflect.  I think the space was good.  I still have the last thing that Julia wore on my dresser.  I pick it up from time to time to smell it and to hold it.  It doesn't really smell like her anymore, but I like to think it does.  One night last week I even slept with it like some kind of security blanket.  The process of grief.  I'm 3 months in.  It's a process that will last my lifetime and take many twists and turns, so I've heard.  I'll keep you posted on mine.

In the meantime, please don't forget Julia.  Please keep praying for our family.  And please never hesitate to check in with me and ask me about her.  I haven't forgotten about her.  I think of her every day and it means a lot to know you are thinking of her, too.

She's lived in Heaven as many days as she did on Earth

Today marks the day that Julia has lived as many days in Heaven as she did on Earth... 82 days.  I know she is happy.  I am sad and missing her.  I think that as more time has gone, the hole she left has only gotten bigger, not smaller.  Many other women are having babies and life is moving on... but life for me has not.  It is just a reminder of the life I once had and do not have anymore.  I don't understand and I probably never will.  However, I do know that I loved my little Julia and I will love her forever. 

His Life Was Marked by Love, a Father’s Eulogy for his Son

(Thank you, Kim, for forwarding this to me.) 

His Life Was Marked by Love, a Father’s Eulogy for his Son
(This little boy was born with trisomy 18)


I stand before you today as a father who grieves the loss of my son – my Samuel. I’m able to stand and to speak because you’ve have been with us, sharing in our suffering. We are humbled, overwhelmed, and grateful for your love. I cannot offer sufficient thanks to you for the thousands of prayers offered on our behalf, the time spent crying with us and for us, the boundless supply of food and other practical resources you’ve provided, the gifts of love you’ve made in memory of Sam, and, most importantly, your presence with us. For all of these we are more than thankful.

Today, I want to say just a few words as a way of honoring Samuel and as an offering to God of our continued trust in His loving-kindness and faithfulness.

For months, I have tried to imagine this day – the inevitable day that we would be remembering our son. Having been diagnosed with a condition many call “incompatible with life,” I wasn’t sure what I could say, or what I would get to say, about Sam’s life.

In early November, when we did not know whether we would get to see him or to hold him alive, I wrote the following:

“How does one remember a life which ends before it begins? How can one offer a good word about a life whose every moment was coded for death? Is it all a waste? And when I consider Samuel – his life – is it a waste for him? As I think through these questions, I reflect on Sam’s experience. Our precious, vulnerable son is experiencing the fierce and undying love of a mother who cares for, nurtures, carries, and cries over him. He is hearing Micah’s joyful sounds of laughter as he refers to his brother affectionately as “Bonkey-Pants.” And Samuel is hearing me say “I love you” as I try to find a way to protect him. Would Samuel have been better off having not experienced his mom’s love? Is his brother’s love and laughter wasted? Are my words insignificant to his little life?”

Now, standing on this side of Sam’s four hour and fifty-eight minute life – and having held my son for almost that entire time – I think I’m in a better position to answer these questions.

For the short time Sam was alive and in our arms, he breathed, he studied our faces, he listened to our voices, and he responded with soft and sweet sounds. He was determined. He was courageous. He was beautiful.

In the midst of everything, I was surprised by the peacefulness and normalcy of the entire experience. I sat, cradling him in my arms, and talked with Fr. Rusty; we were two friends together sharing the grace and gift of this new life.

When Fr. Rusty stepped out for a moment, I took the opportunity to tell Sam about his amazing mom and brother. I told him about how his mother carried him selflessly without a thought to anything she would expect to receive from her love. I told him about how Micah helped us to give him his name and how much he loved being the big brother. I told him that I loved him and that I was blessed to be his dad. He heard me sing softly – a song I sang to Micah just moments after Micah had been born.

During these hours, Sam got to see Alisha’s face and hear her sweet voice as she held him in her arms. He was blessed and baptized by Fr. Rusty. Hope Mardre, his godmother, held him and spoke sweet words about our precious and beautiful boy. He got to meet our friends Lindsey and Braxton and Golson who welcomed him lovingly. Some of his extended family were able to hear his sweet voice on the phone. He was cared for by nurses and doctors who held him tenderly and who cried with us as he took his final breath. And there were many like Jeanne Dean, who had come to stay with Micah when we left for the hospital, awake and praying us through those sacred hours. Our little corner of that neonatal intensive care unit was a holy space; our time was peaceful, calm, significant, beautiful, perfect.

In short, our son, our sweet Samuel, experienced the embrace of a whole community who welcomed him lovingly into a broken and vulnerable world. Samuel’s life, however short, was a life born in love, surrounded in love, and completed in love. His life was marked by something greater than his defects, his disabilities, his injuries; his life was marked by love.

Not one moment of Sam’s life was a moment devoid of love. He was loved. He was loved fiercely. He was loved well.

Sam’s life was not a life that ended before it began. His life ended as it began: in the love of family and friends and in the love of a God who is faithful and abounding in mercy.

And Sam’s life was not a wasted life. He was a gift, a precious and beautiful gift, given to us to care for as best we could. The months that Alisha carried him and the hours we held him were some of the most profound and most significant of our lives.

Loving Samuel was our calling and I’m so glad that we got to be his parents. I’m so thankful we got to love him.

Julia was born 5 months ago today

My dear Julia,

I have been thinking of you nonstop the last 24 hours. I've been replaying all the events leading up to your birth which was at noon today. I miss you now more than ever. Mattie and I were playing Mattie's version of Candyland today (Mattie rarely plays games the way they are supposed to be played.) There were 3 play pieces. Mattie put one of the game pieces at the end of the game with the Candy King. She said, "Julia is with the King." And then Mattie and I had to play the game to get to the King. I thought that was a perfect image... since you, my little one, indeed are Home with the King and Mattie and I are still trudging along our path of life with the goal to meet you (and the King) in Heaven one day. Our path to you seems so long. Mattie talks about you every day.

I love you, my child. I miss you.

Love,
Your mommy

A tree for Julia

My Aunt Terri and Uncle Ted sent us a magnolia tree to plant in Julia's honor. It will have beautiful pink flowers when it blooms. We took out a bush in the corner of our yard and planted it there. I think it will be a perfect spot for it.





It will one day look like this:


Also, here are a couple updated photos of the Julia rose bush. It is doing well and about to bloom!



It is wonderful having so many beautiful reminders of Julia around our yard.

Comments from Mattie and other young kids...

Last week Mattie's friend Josh came to play. When they pulled up, Josh saw me talking to my friend who was holding her one-year old. Josh said to his mom, Christa, "Mom, is that Val's baby?" Christa: "No, Val's baby is in Heaven." Josh: "Where's Heaven?" Christa: "I'm not sure." Josh: "Do you take an airplane to get there?" (Hehe) It's funny because Christa had not said anything to Josh about Julia's death up until that point. It randomly triggered his memory that I had a baby when he saw me talking to my friend holding her baby.

On Easter, Bob's mom took her granddaughters to church. The following is what Sally emailed me about their conversation in the car on the way home from church: On the way home they repeatedly asked me to tell them the story of Easter. They were very excited to hear about Jesus coming alive again. Sarah then said in a very relieved voice,
"Then Julia's really okay. She's alive again, even though we still can't see her!"

Yesterday, Mattie was at her friend Claire's house. Not long after we got there, Claire came into the kitchen where her mom, Karie, and I were talking. She told her mom that "Mattie's baby sister died." So Mattie must have said something to Claire about it. Karie didn't make a huge deal of it and Claire went on her way. Then a half hour later or so later Karie and I overheard Mattie and Claire talking while they were playing. Claire: Why did your baby die? Mattie: She had heart problems. Claire: My heart works just fine. Mattie: Mine, too! Claire: When I go faster, my heart goes faster. Mattie: Yah, when I jump up and down, my heart goes faster up and down, too.

Tonight when I was snuggling with Mattie she just said out of the blue, "I miss Julia." My eyes started welling up and I said that I missed her, too. I asked what made her think of that. She said, "I don't know. I just miss her." I said, "Yah, I really miss her, too. It makes me sad she isn't here with us." Mattie said, "But you still have me!" And I responded, "Yes I do and I am so thankful to God for that! I love you very very much."

Easter... 2 months since her death

Today was filled with many mixed emotions... two months ago today, Julia passed away in my arms on this couch where I am sitting. Today is also Easter, the day we celebrate Jesus' resurrection. It is typically a day of celebration. Jesus has overcome sin once and for all. Today, however, I had many mixed emotions. I found myself grateful that Jesus had overcome sin because that means that I will one day get to go to Heaven. My main reason of joy should be the fact that I get to be with God for eternity. However, today, I couldn't help but be grateful that one day I get to go to Heaven so that I can be reunited with my sweet baby. I will actually be reunited with all 3 of my babies who are there waiting for me, it's just that I haven't met 2 of them yet. It is Julia I miss. As pastor Brian talked about the weeping Mary Magdalen and her grief over Jesus' death, I related to her. I was weeping inside over the death of my baby. Brian said that possibly because of Mary's tears and outpouring of her heart, that God revealed Angels to her at the tomb where Jesus' body had been whereas John and Peter did not see Angels. In her grief, God blessed her.

A friend emailed me today remembering Julia's death and tying it to Easter. I liked what she said: "There were dark days, and then He rose. And I know you will too." Those words were very encouraging to me.

With Hope by Steven Curtis Chapman

I saw a playlist on iTunes about the loss of a child and this song was on there.

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

More about triggers and grief...

We are in the process of refinancing our house. In a couple of days we're going to get our house appraised. In order to "woo" the appraiser, we were working on tidying up the house and making things look as nice as possible. I walked into the guest room that was also Julia's room and saw Bob going through a bunch of old medical stuff that once belonged to Julia. He was putting them into to piles: throw away and donate. I was so surprised by my reaction... my blood pressure shot through the roof, my heart started pounding, and I felt total anxiety. I found myself getting very upset and I just couldn't let him throw or give anything away. He wasn't being insensitive to me, he was just clearing things out to make room in the drawers for other stuff so we could tidy. It was very reasonable. But what I discovered about myself is that I'm not ready to be reasonable yet. Tears came to my eyes and I got very sad. Writing this makes tears come to my eyes. I love my baby and I miss her.

Yesterday, a woman from the Silicon Valley Down Syndrome Network came to the house to drop off a meal. She came with her 2 daughters, the younger one having Down syndrome. I found myself sad. Both her daughters were beautiful, but I was especially captured by her daughter with Down syndrome. She had these adorable blonde curls and long eyelashes. She was so sweet. I imagined Julia as older and just as beautiful and precious.

Then earlier yesterday I brought home one of Mattie's little classmates from preschool. We put her booster in the back next to Mattie. After the 2 girls got buckled in, Mattie said to the little girl, "That's where Julia's carseat used to go. But she died." The little girl was very confused so I explained that Mattie was talking about her little baby sister. It made my heart sink.

Visitor from Heaven by Twila Paris

A visitor from Heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from Heaven
Accompanied by grace
Reminding of a better love
And of a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came

A visitor from Heaven
If only for a day
We thank Him for the time He gave
And now it's time to say
We trust you to the Father's love
And to His tender care
Held in the everlasting arms
And we're so glad you're there
We're so glad you're there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came

A Man in Grief...

A Man in Grief
It must be difficult
To be a man in grief,
Since “men don’t cry” and “men are strong”
No tears can bring relief.

It must be very difficult
To stand up to the test
And field calls and visitors
So she can get some rest.

They always ask if she’s doing all right
And what she’s going through,
But seldom take his hand and ask,
“My friend, but how are you?”.
He hears her crying in the night
and thinks his heart will break.
He dries her tears and comforts her,
But stays strong for her sake.

It must be very difficult
To start each day anew
And try to be brave~
He lost his baby too.

Poem sent by my friend, Jen.

A Pair of Shoes Poem

My friend Jen sent this to me. Thank you, Jen.

“A Pair of Shoes”
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Happy 4-month birthday, my sweet baby.

Dear Julia,

We are celebrating your 4-month birthday in Tahoe. We just arrived today. It is beautiful. It has snowed just recently and the trees are all covered in white. I wish we could be experiencing it together. One of the things I longed for you to do was be able to feel the snow on your little nose. I can't even imagine how even more beautiful Heaven must be. I'm just so happy you are not suffering any longer. But I miss you. I can't help but wonder what you would be like if you were still with us. I bet you would be smiling by now.

I can't believe it has been a month since your memorial. You are in my thoughts every day. In some ways it seems as if forever has passed since you went up to Heaven. Life has a way of trudging on no matter what. But there are moments when I just long to hold you again. To look into your eyes again. Your sister, Mattie, has not forgotten you one bit. Every night at dinner when I ask what she is thankful for she says she is thankful for sphinx, our cat, and you, Julia. You are almost always a part of her daily play. She considers herself the big sister even now that you are gone. That makes me very happy. I am so sad that you did not get to grow up together. It was one of the strongest desires of my heart and still is. Mattie still loves you very much and I know she always will. Your daddy mentioned your birthday today. He was thinking of you, too. He also mentioned that he was sad you were not here.

Oh sweet baby. Sweeter than this world could handle so God took you up to be with Him. I love you so much. I miss you so much. I just want to love and kiss you.

Happy birthday, my daughter.

Love,
Your mommy.

Don't Cry if You Love Me... Saint Augustin

Sent to me from my friend Maggie. Thank you, Maggie. A beautiful image. But I can't promise not to cry. :)

Don't Cry If You Love Me by Saint Augustin

If you knew the gift of God
and what Heaven is.
If you could hear the angels singing
and see me among them...
If, only for an instant, you could contemplate,
just like me,
the Beauty before which all beauties turn pale.
Trust me.
When the day, which God has stated and knows, arrives
and your soul, which has been preceded by mine,
enters this Heaven,
That day you will see me again,
you will feel that I still love you,
that I have always loved you
and you will find my heart
with all its love purified.

You will see me in transfiguration,
in an ecstasy of happiness.
No longer waiting for death,
but walking with you
and holding your hand along new paths of light and life.

So, wipe your tears away
and don´t cry, if you love me...

Video about Down Syndrome

Along with the article about the lawsuit concerning the birth of a baby with Down syndrome was this video about people who are glad that they gave life to their child with Down syndrome. Here is the You Tube link:

http://www.youtube.com/watch?v=jVxz71ygHbk&feature=player_embedded

How did I feel as I watched this video?

Well, it made me cry. I have had such a mix of emotions surrounding Julia's life and death. Watching that video made me wonder what I was missing out on by not being able to see Julia grow up. I'm sure that anyone with a child with Down syndrome will tell you that I missed out on many good things as well as many really really hard things. One woman put it, "I always feel so overwhelmed that I don't experience the joy." I appreciated her honesty. Another woman responded, "Don't be sorry. You are not alone. Having a child with special needs is exhausting, stressful and sometimes heartbreaking. Nobody really goes around all day in saintly bliss because of their child with DS! When things get overwhelming, it's hard to find the joy in anything! I have been peppered with this same advice lately: "Take care of yourself." Get breaks whenever possible. If you don't miss your kids, you haven't been out long enough! And when the fog clears and you get one of those moments of clarity, where you feel the joy, or wonder, love or just acceptance, write it down." I really appreciated her honest and yet very supportive response, too! (That is what is so great about the people in the SVDSN.) In some ways it feels like our lives have been spared some future hardship from Julia dying so young. But in other ways, it feels like some profound joys and a deeper love than we could ever know have been stolen from us. Ultimately, *Julia* was taken from us. That is what is most tragic. On the video, I look at the pictures of the kids and parents and what they have to say about their child with Down syndrome and it makes me wish I could of had the chance to have been inspired by Julia. I think she was inspiring and would have continued to be inspiring.

I recommend you watch the video.

In case the You Tube link doesn't work, here is the link to the article and video:
http://www.lifenews.com/2012/03/13/couple-wins-suit-doc-didnt-suggest-aborting-down-syndrome-baby/