"It smells like Stanford"

I took Mattie in to see her doctor this evening.  She's been complaining about her tummy "feeling funny" for a couple of weeks now.  No other symptoms, just her tummy feeling "funny."  I was trying not to think anything of it, but after 2 weeks, I decided for my own peace of mind to have her see the pediatrician.  Well, nothing important to report. Everything with Mattie is probably fine.  The appointment itself is not why I am writing a blog post.  It is because of what happened on our way out of the medical center in the bathroom.

On our way out, Mattie said she had to use the bathroom so we found one near the front door.  As soon as we stepped inside the one-person bathroom and locked the door, I was immediately struck with a flashback to Lucile Packard Children's Hospital.  It smelled JUST like Lucile Packard where Julia was born and spent 8 of her 11 weeks of life.   Well, mostly it smelled like the rooms where Julia stayed.  It was uncanny.  Meanwhile, I am helping Mattie and keeping my thoughts to myself.  After Mattie uses the toilet and as she is washing her hands at the sink she casually mentions, "Mom, this bathroom smells just like Stanford."  I was kind of blown away.  She REMEMBERS!  It almost made me cry.  I responded that I was thinking the exact same thing!  I wanted Mattie to be validated in her observation and I wanted to make it a connection point between us.  We both shared this memory together.  We agreed that one of the contributing factors was the smell of the soap that was in the dispenser.  We had a chuckle about it together.  But somehow, it was even more than just the soap.

I just couldn't believe Mattie made that connection.  I am sure that Mattie remembers much much more of Julia and her life than I am even aware of.  She hardly every brings up Julia or talks about her.  I almost feel like it is intensional on her part.  But I don't know.  But for her to say that meant a lot to me.  It means that she does remember.  It is sad that one of the parts she remembers about her sister is the smell of the hospital where Julia spent most of her life.  But she remembers nonetheless.

It was also tough on me to be transported back to that time.  It is also sad that the smell of Lucile Packard is permanently etched in my brain due to my daughter having to spend most of her life there.

Visiting Julia's bench as a family

Since yesterday was so packed, we decided we would go as a family to visit Julia's bench today.  So that we could be relaxed and not rushed, we decided to skip church and leave around 10:30.  Also, rain was predicted and it wasn't raining (here) yet, so we figured we had better take advantage of that.  Of course, it was drizzling in the Santa Cruz mountains.  But that actually added to the adventure and mood instead of detracting from it.  We practically drove through the clouds to get to Mount Hermon and it was beautiful.  It actually felt a lot like being in Seattle, surrounded by trees and in a drizzle.  I had picked up some roses at Trader Joes before we left.  I wanted to leave two on Julia's bench to honor her 2nd anniversary of her homecoming.   So we all got into our rain gear and walked down to the bench.  Bob was amazed how "new" it looked after the cleaning I gave it just a couple of weeks ago.  We didn't stay long.  The drizzle was pretty steady.  We took some photos and then walked back to the car.  I left the two roses sitting on the bench hoping that others will admire them and read the plaque with Julia's name on it.  It makes me happy that she is remembered even by strangers who don't know her or her story.

After leaving Mount Hermon, we drove to Ben Lomond to a favorite german restaurant, the Tyrollean Inn, to have some lunch.  Mattie loves this place because it has a kids' play area.  We got a seat right next to the play area and redwood tree in the outside covered patio.  Yes, there is a redwood tree in the middle of the covered patio.... so Santa Cruz mountains!  They had heat lamps in there and they even turned on the gas fireplace next to us.  It was so cool to hear the rain on the canvas roof yet be nice and warm and dry.  Bob had schnitzel, I had a Rueben, and Mattie had sausages.  After that, we drove to Santa Cruz for some Marianne's for dessert!

February 8, 2014... 2 years since Julia's death

I have a few hours to myself tonight.  This is definitely not typical for a Saturday night.  It is not how I would have planned it if I had been given the chance.  But it is definitely a gift.  It's been a full day with Mattie's activities steering the schedule.  She had a birthday party to attend this afternoon.  And right now she and Bob are at a Daddy-daughter ball!  How about that?!?  So awesome.  The result?  Time to myself on Julia's anniversary.  God knew it was just what I needed as long as I took the time to use it and not waste it.  I spent the first hour cleaning, putting laundry in the wash, and talking to my mom.  Definitely not wasted time... but not the focus and purposeful time I need to spend in reflection of my daughter, Julia.  My daughter who died on this day 2 years ago.  Last year, I had a lot of anxiety around this day and we planned a very meaningful day that turned out just perfect.   Just what I needed.  This year, I did not have a lot of anxiety about it.  Life has been busy and I have been consumed (or allowed myself to be consumed) with the daily life of Mattie, school stuff, Bob and his stuff, and all my stuff.  It's been good stuff.  Life has been good.  And my day to day is generally very happy.  The intensity of grief has softened.  But my thoughts are never far from Julia.

I am listening to a playlist that I created for Julia-related songs.  Right now "Be Merciful to Me" is playing, a song by Caedmon's Call that I used to cry out to God so many times during my pregnancy with Julia and even after her birth.  It was my primary prayer after the diagnosis... Oh Lord, just be merciful!  I didn't know what to pray.  I didn't know what I wanted to pray.  I was so scared for the future.  I just wanted God to be as merciful to me and my family has He could.  I deserved nothing... but asked Him for unmerited Grace.   Did God indeed show mercy to our family in the life and death of Julia?  Yes, He did.  That I know.   But it is not for me to say or know what parts were the work of His Hand and what parts were the consequences of this broken world.  What I do know is that our family still stands.  We are not defeated.  God has given us the strength to keep taking one step at a time.  Bob and my marriage is not broken.  We have survived and are drawn to each other.  That is God's mercy!  ... And so was God's gift of Julia's red hair. :)

Where is my heart 2 years later?   I have described it to friends as this:  my experience with Julia (my pregnancy, her birth, her short life, her death) ripped a gaping wound in my heart that is now scabbed over.  My heart is a little hard and calloused right now.  I am emotionally tired.  I don't have a lot to give.  I am still in recovery. I am in a valley and a wilderness.  I am wandering.  Not from God...just around God.   I am kind of wandering around like an ant who lost sight of his line.  I am figuring out what my life is going to look like now.  What is next now that I don't have Julia?  ...Now that I only have one child when I wanted two or three?   I am not happy about this at all.  In fact, I am mad about it and I am working through that, too.  I long to have another baby in my arms. And in so many ways, I didn't even get to really enjoy Julia.  Most of my time with her was with tubes and wires everywhere in a hospital.  I only go to spend a few hours with her each day because I had a 4 year old daughter who needed me and I was trying to keep life as "normal" as possible (with NO idea that Julia's life would be cut so short).   I was cheated out of time with my only other daughter.  I was cheated.  I drew the short straw.  It is hard for me to see how babies seem to just "work out" for other people.  I know many women who have gone through fertility struggles... but what I struggle with is that most of them I know have ultimately been able to get their 2nd or even 3rd kid.  I had my 2nd... but she was sick and she died.  That part hurts and just sucks.  So I live holding this pain and frustration in one hand and the mercy of God's blessings: my husband, Mattie, my life, and even my future in the other hand.  And that kind of sums it up.

What about Mattie?  Well, she is thriving.  I know it is very normal... but she barely speaks of Julia anymore.  Pictures she draws of our family that used to have 4 members in it now have 3 and a cat.  We ran into a friend at Target today who said to both of us, "This is a very important day to remember."  To which Mattie responded, "Yah!  I have a birthday party to go to!"  This kind of sums up that.  Again, I know this is normal, but it is painful for me.  This morning she felt my tummy and said she thought she felt something moving.  "A Baby?!?" she asked excitedly.  I assured her it was not.  It was my breakfast digesting.  She asked me last week if I am going to have another baby.  My response to her was that I wish I could but I don't think my body and make any more babies.  I feel I should be honest about it.  Mattie is complicated and hard to read.   I think in some ways she'd like a sibling but in other ways she likes having ALL the attention on her.  Again, pretty typical, I guess.  I just want to keep Julia "alive" in our house so that Mattie does not forget her and so it keeps the door open to talk about her.  I am sure Julia's life and death will be something we discuss throughout Mattie's life.

Well, that's enough rambling.  I thank God for this time that was orchestrated, intentional or not, for my benefit.  I seem to not prioritize writing on Julia's blog as much these days.  Part of it is that I don't have as much to say.  But I am glad I got to spend some time tonight.

Goodnight, my sweet Julia.  I wish I had the chance to kiss your precious red head again.  I am glad you are healed and whole in Heaven.  I long to join you one day.  But for now, I have a very important job, and that is to be a wife and mother here on earth.  My job is not done here.  So until I get to hold you once again, I will think of you and long for you and long to join you where you are... where there is no pain, no sickness, and all love.  You were a light here on earth, my sweet girl, and you will always be remembered by many.

My Julia Playlist:

My Hope by David Crowder
Be Merciful to Me by Caedmon's Call
Be Still by Justin McRoberts
Blessings by Laura Story
Held by Natalie Grant
I'll Rescue You by Bill Deasy
Learning to Need You by Justin McRoberts
Never Alone by Barlow Girl
Out of the Depths by Sovereign Grace
Homesick by Mercy Me
Heaven is the Face by Steven Curtis Chapman
Fingerprints of God by Steven Curtis Chapman
Oh Great God of Highest Heaven
Sing to Jesus by Fernando Ortega
You're Beautiful by Phil Wickham

An article about birth defects and God's plan...

This article was shared on a blog a friend from church connected me with.  This family lost a baby... a baby with Down Syndrome... a baby named Julia.  The similarities are uncanny.  It was their 2nd daughter.  She just passed away this past December, 2 weeks before Christmas.

After she passed away, the father shared this article on their blog for their Julia.  I read it this evening and it really resonated with me.  So I wanted to post it on my Julia's blog.

Here is the link:
http://www.christianitytoday.com/women/2013/july/are-birth-defects-really-part-of-gods-plan.html?paging=off

I will also cut and paste it here:

"Your baby has hydrocephalus, a possible chromosome disorder, and what appears to be a cleft lip. We don't know what his odds for survival are."

When my friend Jen Gibson heard those words back in April of last year, her heart dropped. She and her husband Tim had known there were complications with their son Eli's development in the womb, but now their fears were confirmed.

Birth defects are more common than we think. The Centers of Disease Control and Prevention report:

Every 4.5 minutes, a baby is born with a birth defect…. Birth defects are a leading cause of infant death, accounting for more than 1 of every 5 infant deaths. In addition, babies born with birth defects have a greater chance of illness and long-term disability than babies without birth defects.

Within just a few weeks of my friend learning about her son's condition, my midwife called me with sobering news: I was carrying conjoined twins, something that happens in only one of 200,000 live births.

After an MRI, I found out my girls had developed almost no lung tissue and would not survive for long outside of the womb. It was devastating.

Christian mothers who receive news of birth defects or fatal diagnoses for their babies face overwhelming questions. For me, the question of whether to continue the pregnancy was the most black-and-white choice I had to make. I believe life is sacred and that my daughters deserved as much life as I could give them.

The tough questions came when I tried to make sense of verses like: "I praise you because I am fearfully and wonderfully made" (Ps. 139:14). Did I believe God created my children just they way they were meant to be, birth defects and all?

I struggled with Exodus 4:11, where Moses expresses his reluctance to speak in public: "The Lord said to him, 'Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?'" Is God taking credit for all physical defects?

In the passage, God is frustrated with Moses to the point of anger. Moses is worried that God won't be able to help him with a small speech problem, just after God has shown Moses some convincing miracles to demonstrate his power. As Terence Fretheim observes in his commentary on Exodus, the point of this passage isn't to show that God reaches into every woman's womb and singles out who becomes blind or mute or deaf. Rather, God emphatically tells Moses that he is in control of the world, a world that includes speech problems, hearing loss, and loss of sight. God shows Moses that he can work around these things and still accomplish his purpose.

Still, many of us with children who are ill grapple with the questions, "Why do we suffer? Why do our children have to suffer?"

Like so many things, it dates back to the Garden of Eden.

In his book, Give Me an Answer, Pastor Cliffe Knechtle writes, "When we human beings told God to shove off, he partially honored our request. Nature was adversely affected. Genetic breakdown, disease, pain, and death became part of the human experience. We are born into a world made chaotic and unfair by a humanity in revolt against its Creator."

God isn't responsible for things like suffering, birth defects, and the general breakdown of our world. It is the consequence of original sin.

A family in Nashville welcomed a daughter last year who was born with a similar disorder to my friend's son. The Browns sayof their daughter Pearl: "Things didn't go wrong. God has designed Pearl the way he wanted, for his glory and our good."

While the Browns, a Christian family, are dealing with their situation with grace and dignity, I disagree with their perspective. Things did go wrong. Pearl's brain development stalled in the first few weeks in the womb. I don't believe that was God's perfect plan for Pearl or her parents.

Things went wrong with my twins' development, too. The girls didn't fully separate when their bodies were being formed, resulting in a shared stomach, intestines, and abdomen. They had no lungs. This was surely not the way God wanted it.

It brings me comfort to consider Psalm 139:14 with regard to our souls. God says we're made in his image, but he acknowledges that he is a spirit, a non-corporeal being. Even though our physical bodies may not be formed perfectly in the womb, our souls, the parts that matter the most to our Creator, are indeed fearfully and wonderfully made.

Eli Gibson passed away on Oct. 25, 2012. He brought his family great joy during his five short months. Jen, Tim, and their daughters cherish the short time they had together with him.

My twins Amelie Lillian and Adaline Genevieve were born on Sept. 21, 2012, and passed away in my husband Caleb's arms after 52 very short minutes. My heart misses them every day.

Almost a year later, I still wrestle with questions. For many of us who have had lost a child to birth defects or live with a child with physical problems, sometimes we can only take comfort in the hope that one day we will hold our children, free from pain and made completely whole in the presence of God.

I've got two arms reserved for Amelie and Adaline.

Heather King has a passion for music and writing. For the past 15 years she's fronted the worship band Daniel's Window and taught piano and voice in her private studio just south of Chicago. She loves scary movies, Stephen King novels, her salsa garden, her daughter Hayden, and her freelance comic book artist husband Caleb. Connect with Heather at her blog, hit her up on Facebook, or check out her band's music on iTunes.

Cleaning Julia's bench

I am at Mount Hermon for the PBCC women's retreat this weekend.  I carpooled with my friend Karie, who was helping with check in, and was able to come a little early yesterday to get a head start on the retreat.  Many many months ago, the last time we visited Julia's bench, we noticed it started getting a bit dirty and dingy from being in the elements.  So I brought with me to the retreat some cleaner and a scrub brush with the intention of cleaning the bench.  Since most people would not be arriving for another hour or two, I decided to spend some time alone at Julia's bench and work on cleaning it.  All I had was the bottle of cleaner and a scrub brush.  I had no towels or water.  So I went to the women's restroom and got a bunch a paper towel in there and then filled up my water bottle.  It would have to do.

The act of cleaning Julia's bench was very therapeutic for me.  As I cleaned I failed to find some fitting metaphor to fit my act of love.   I wanted to feel like every speck of grime I scrubbed off would clean my saddened heart.  It didn't.  But the physical labor indeed was satisfying in itself.  The beautification of it.  It was being well taken care of just like the care I would have given to her.  It was being honored.  I just want Julia's bench to be beautiful as she was beautiful.  I want the bench to be clean and inviting and noticed.  I want her to be remembered even by people who never knew her or her story.  And I wanted to deter people from defacing our precious memorial by etching their initials into it.  There are already a couple.

As I was scrubbing away, a man was walking by with his bicycle on his way home.  I am not sure who started the conversation.  But for some reason I decided it was safe to tell him that this was my daughter's bench.  His face became reflective.  He told me that he had sat on the bench many times and had noticed the plaque.  Then we went on to talk about the drought and the weather for a bit.  He worked at Mount Hermon as a volunteer, doing what I do not know. But before he left, he told me he would never this.  It meant a lot to me.  I didn't even tell him about Julia and how or why she died.  But I could tell he was very touched.

A little while later, another man walked by and made some comment about cleaning the bench.  It is funny because I said nothing to him about it being my daughter's bench.  I just get gut feelings about people to whether I can let them in and share about Julia.  I could tell he wasn't at a place to receive her precious story.

After cleaning, I just sat on the bench and soaked in the air, the forest, the creek.  I am so thankful for a place to come and think about Julia.  It is perfect.  So much better than a cemetery.  And now, the bench is looking good as new so others can come and rest on it and maybe even read the plaque and read her name.  And in that, she is remembered.  Others will know she was a girl who was deeply loved.

Julia's ashes

I've recently started reading Mattie "Little House on the Rocky Ridge."  It is a series written by one of Laura Ingalls Wilders descendants about Laura's daughter Rose.  In the chapter I read last night it talked about a railroad boss finding an "Indian" (Native American) mummified baby.  As I was reading the chapter, I thought to myself, "Oh boy... this could be interesting.  I wonder what questions I'm going to have to answer to this one.)   So Mattie and I indeed started talking about mummies and what they are.  That led to us talking about how we deal with people's bodies who have died in the current times.  So we talked about burial and we talked about cremation.  When we talked about cremation, she asked about what happened to the bones.  So I told her that they burn up, too, just like the rest of the body.  So at that point it was only appropriate that I explain to Mattie that we decided to have Julia cremated and that we still have her ashes and haven't decided what to do with them yet.  She of course wanted to see the box.  So I asked Bob to get it down and show it to her.  She wanted to see the ashes, but of course, that was not possible.  The box is sealed with tape.  I had forgotten how small the box was.  Seeing it made me cry.  It was appropriate and ironic that all this came up last night because yesterday was the 8th... the anniversary of Julia's death.  I don't like to attach God's fingerprint to all things that happen every minute of every day as if He's some puppeteer in Heaven controlling everything... but one has to wonder when things seem to "line up" a bit too perfectly.  Certainly not all things are coincidence.  I'm glad we had the chance to talk about it as a family.

1 year since her memorial service and her 15 month birthday

Today was the 1-year mark since Julia's memorial service.  It also would have been her 15 month birthday.  I felt a little more sullen today than usual.  There were a few factors contributing to this, I'm sure.  First, I didn't sleep that well last night.  That's never a good start to the day.  Then, Mattie discovered a bag of her old baby bottles in the garage and she decided to play "baby" this morning.  Did I mention that she's on break this week from school and so she's home all day after she and I were alone all weekend with Bob out of town?  Oh, yah, I forgot to mention that.  Part of playing baby is that she also dragged out my old nursing pillow and wanted me to pretend to feed her milk from the bottle on the nursing pillow.  While playing along with this my mind wandered.  I thought of nursing Mattie and how much I loved that time.  Then I thought about the fact that I never was really able to nurse Julia and how she was mostly fed through a tub her whole life.  We didn't know most of her life that she was actually fighting for her life and didn't have the strength to eat on her own.  Then I just got sad about wishing I had a real baby to hold.  (I'm sure at this point, any new mother reading this would happily say, "Here, take my baby while I go take a nap.")  Yes, I even thought about that... about how new babies meant no sleep and lots of work.  But that thought did not really help me feel any better.  And then the weather today was kind of gray, in general.  Of course, being from Seattle, that should not phase me.  But I fully admit I am now a California whimp and it does affect me.  But all those factors are just small contributors to the main issue: I had a baby and she died.  And today was commemorating her memorial instead of celebrating her 15 month birthday.

I've been reading the Little House on the Prairie series with Mattie and tonight, of all nights, we finished reading the last chapter in the last book of the series, "The First Four Years."  Tonight I read about how Laura's 2nd child, a son, died suddenly and unexpectedly.  Laura's first child was a daughter named Rose.  She was the apple of Laura's eye and full of spunk and life.  Much like Mattie.  Then when Laura's son was just a month or so old, he died.  She never had any more children.  I found myself feeling so sad for Laura.  It's silly, but I also found myself just a bit comforted by the fact that Laura shared a similar story to mine.  I also wondered what reading those words would do for Mattie's heart.  I asked Mattie if it was sad reading about Laura's baby who died.  Her response was, "Well, she still has Rose!"  Hmmm.  Yes, Mattie connected the dots allright.  That is what she says to me when I get sad about Julia: "You still have me, Mama."  And I am always quick to tell her how blessed and lucky I am to have her as a daughter.

In remembering the memorial service, I have many fond thoughts from that day.  I was so touched and overwhelmed by the support of my family and friends.  So many even flew down to come to the memorial.  We estimated that there were maybe 250 people at Julia's memorial.  A huge goal of the service for Bob and me was to give people a picture of Julia and to get to know her.  For many who never got to meet her, it was the only time they were both introduced to her and yet saying goodbye to her at the same time.  I wanted to show how meaningful and special Julia's life was even though she lived less than 3 months, that her life was truly worthwhile and valuable.   I really felt God's presence during that day and during the service.  The service was everything I wanted it to be.  My friend Melissa headed up a crew of friends to put together dahlia bulbs to pass out after the service.  That has been such a blessing because all throughout last summer, people would send me pictures of their beautifully blooming dahlia or tell me about their dahlia and it was so nice to see life come from death.  It was so wonderful that Julia's life was being remembered in these flowers.

There.  Thinking about the memorial actually has lifted my dark cloud and made me remember so many wonderful and positive things.  I have such fond memories of some very very special and significant time spent with some of my closest friends and family the days surrounding Julia's memorial.   God continues to show His love and faithfulness to us through our family and friends.  What a blessing they are.

Speaking of wonderful friends, here is a photo taken a few days ago of our mantle.  I put up Julia's photo on the mantle along with her doll and lamb in remembrance of her.  Along with them are all the cards people have sent us over the past couple of weeks surrounding Julia's Homecoming date.