Thursday, April 7, 2016

Conversation about Julia

My good friend Karin emailed me today to tell me about a very sweet conversation she had with her kids about Julia.  I wanted to post it because I want to keep and remember all the ways the memory and impact of Julia's life lives on.  It is a blessing and comfort to me despite all the pain that surrounds it. Thank you, Karin, for taking the time to email me today.  

So the kids and I were talking about sewing which led to talking about how Josiah and I made that quilt for Julia before she was born and Josiah was not yet three. That led to about half an hour of questions and talking about Baby Julia, her life, her health challenges, what you did to care for her, what happened when she died, and that we'll see her again someday. The questions were so specific and they were so interested and attentive. And Hope didn't know what to think when I started to cry as I talked about how we thought she and Julia would grow up together. 
It was so lovely and sweet. Sadly sweet. It just seemed you should know how much Julia was part of our day today. I'm still in tears. 
Love,
Karin

Karin's kids and Julia's life are forever intertwined because Karin's daughter, Hope, was born just 5 days after Julia and Julia died on her son Josiah's birthday.    

Monday, February 8, 2016

Not forgetting

Today 4 years ago Julia's heart beat for the last time.  I was there holding her.  I will never forget.

Life tends to take over and I think it especially tries to take over on significant days when I am supposed to stop and sit and reflect.  Today of course has been crazy.   I had a 2 hour meeting this morning with a woman who is helping me with my credential coursework.  I had 10 minutes to drive from that meeting to an hour long meeting with the child psychologist we just started seeing in regards to Mattie's recent ADHD and dyslexia diagnosis as well as in regards to her transitional issues with moving here to Colorado.  I have assignments I am supposed to be working on and I need to leave to go pick up Mattie from school and then take her straight to the community center where she will do her homework and take her tap dancing class.   It is non stop.

But I decided I would sit here and post on Julia's blog today by hell or high water because I feel I owe it to myself and I owe it to Julia.  I did get to tell the child psychologist our whole story today.  I brought my picture book that I made of Mattie and Julia and our family.  It felt good to share our story... of miscarriages and infertility and of Julia and her life and death.  I got to tell her what an impact Julia's life has made on other people's life.  I got to share how Bob and I stayed steadfastly committed to one another despite all the stress.  And I got to share how God was foundational in it all to giving us the strength to make it through to where we are now.  I also got to share that I plan to have some serious conversations with God when I get to Heaven because I still have a lot of questions that will not get answered here on Earth.  I got to be real and I got to share.  It helps to share because it gets it out.  It is nice to be known by someone else in a place where hardly anyone knows me at all.  So far, around here, I mostly carry my story alone.  Over time that will change... but for now that is the way it is.

So today, despite that fact I still feel like a chicken with my head cut off half the time, I am remembering Julia and all the events that happened today at the time that they happened.

I will not forget.

Tuesday, January 12, 2016

An unexpected email from a Lucile Packard staff member

I could not believe seeing Mandi's name in my inbox this morning!   She and I had several heart to hearts during Julia's time at Lucile Packard and she was very supportive of our family.  I have not spoken with her for at least 3 years!  It is amazing she found my email AND took the time to email me!   It is so significant and meaningful to me knowing the Julia is still alive in the thoughts and hearts of others and her life is still making an impact.  I truly believe that God does not waste a single life and I have been shown time and time again that Julia's life was truly special and significant.  


Dear Val,

Many years have passed and I just wanted to drop you a quick line that I still think of Julia and your family and I hope that you are doing well.  I imagine Maddie is in grade school now and I hope you are still enjoying Tahoe. 

My husband's work has taken us to Denver and I miss Packard and the many families and colleagues I knew there.  I've been meaning to email you for quite some as I wanted to share something with you.  During my last weekend at Packard, I met a wonderful family and I shared with them an unexpected Down's diagnosis in their new daughter.  I don't think I have the adequate words but I truly believe that because of my experiences with Julia and your family, I was able to help this family in a way that I wouldn't have otherwise been able to.  Your little angel, Julia, is continuing to do good things at Packard!

My very best wishes, 

Mandi

Sunday, February 8, 2015

Remembering Julia 3 years after her death

It was a very rainy day today.  All I could think about was that the sky was shedding tears for my sweet Julia.  I was feeling sad, too.

I struggled to get to get to sleep last night.  I kept replaying in my mind the last night with Julia.  It was a rough one.  Julia took a huge nose-dive around 7:00pm.  She woke up in the middle of the night and was clearly agitated.  Her breathing also became more labored and she would gasp for air from time to time.  It was absolutely horrible.  I just remember getting up in the middle of the night to feed her with the pump and being so exhausted and Julia being so agitated and saying to God, "Lord, I just don't know how much longer I can do this!"  I was just so tired physically and emotionally.  I had no idea it was my last night with her.  It is horrible to relive those kinds of things.  One would think that I wouldn't want to.  But the irony is that I do.  I don't want to forget.  Keeping all the details alive keeps Julia alive in my heart.  I think it is important and significant to remember.

It was our plan to leave right from church to drive to Julia's bench at Mt. Hermon.  However, it was raining harder than ever when we got done with church so we decided to delay an hour or two.   The rain did eventually die down a bit and so after lunch we hit the road.

The drive to Scott's Valley over the Santa Cruz mountains wasn't too bad, overall.  As we climbed up highway 17, it got progressively more misty and foggy.  And as we pulled into Mt. Hermon, it was raining steadily.  We decided at that time that we would drive into Santa Cruz and buy some time.  Mattie had gone to the Seymour Marine Lab on a field trip earlier that week and was given a free kids pass to come back.  So we decided to go check it out.  Amazingly, it was not raining in Santa Cruz and the museum was not too crowded.  Mattie enjoyed showing her daddy all the things she had seen on her field trip including petting the shark and exploring the touch tank.  Also included in the admission was a tour to see the dolphins and learn more about the marine lab.  It was cold and breezy but not raining so we decided to do it.  At the museum, I was feeling very happy.  I was thinking that even if we didn't get to Julia's bench due to the weather, it made me very happy that we were having a special and fun time as a family.  For me, that was part of honoring Julia.  It was about being intentional about setting aside time to do something special.

Here is a photo of us at the museum:

We left the museum and thankfully it was not raining we we returned to Mt. Hermon.  We brought a towel and walked to the bench.  When we got there we wiped down the bench to dry if off so we could sit on it.  It looked very clean, almost like someone had cleaned it recently.  It also looked like they had pruned the ivy and other bushes around it.  That was very nice. We didn't spend long at the bench.  But it was nice to have visited.



Finally, we left Mt. Hermon and drove to Ben Lomond to the Tyrollean Inn, a German restaurant we like to visit when we're in the area.  Mattie especially likes it because they have a kids' area to play in an enclosed "outdoor" patio area with heat lamps.  That is where we ate.  During dinner, I asked Mattie to tell me what she remembered about Julia.  She remembered that she has bright red hair and that she had to eat through a tube in her nose.  She couldn't remember a lot.  I told Mattie at that point, that I understood that she was very young when Julia was alive and when she died.  She was only 4 years old.  I told her that I thought it was important that we always took some special time to remember her because I didn't want her to forget about Julia, that I wanted her always remember that she had a sister.  She told us that she sometimes wished she had a sister and that sometimes she is lonely, especially when Bob or I are busy doing other things.  I told her that we tried very hard to give her a sister but that my body just didn't make babies very easily.  I told her how much we wanted her to have a sister.  But I also told her that for some reason it was not hard for my body to make her and that she was my very special little girl.  I teared up when telling her that and she teared up, too.  It was a special moment.  We ended our meal with some yummy dessert to share and then drove back over the hill home.  By the end of the day I was pretty emotionally exhausted but feeling very satisfied and content and happy with how the day turned out.

Tuesday, November 18, 2014

Julia's "3rd" birthday...

Sigh... Looking at Julia's blog, it is sad that I don't ever post much on it. Honestly, I am just not as good about blogging in general these days.  I allow myself to get sucked into the tyranny of the urgent and I don't devote the time I used to for quiet reflection and contemplation.  But it is days like today that make me stop and sit and reflect.  Today, Julia's 3rd birthday.

I like to go through the mental and emotional exercise of remembering all the moments from the day. In my mind I just don't ever want to forget.  So forgive me.  I am going to take a moment... a long moment, actually... and replay that day 3 years ago today.

What a day it was, too, three years ago.  The day before at my last ultrasound appointment at Lucile Packard I was told that they thought Julia was measuring only 4 lbs 12 ounces, which meant that she basically had hardly grown at all in a month.  They also thought that there might be an issue with the umbilical chord.   So basically they admitted me to the hospital right then and there... No hospital bag, no jammies, no toothbrush, nothing.  Bob was with me and Mattie was at a dear friends who graciously kept her through dinner and into the evening until Bob could go get her.  I was freaked out.  I was not ready.  I had 3 more weeks until my scheduled c-section.  I was scared!  I was not ready to bring a child with Down syndrome into the world yet.  And that she was only 4 pounds and not growing I thought the worst!  I cried.   I was checked into a shared room for the night with another woman on hospitalized bed rest.  I never even saw her.  Our curtains were between us.  Late that evening long after Bob left to be with Mattie,  my dear dear friend Karin came by to spend some time with me.  She was pregnant and a week over due!  She came and got in bed next to me.  It was quite a sight, two huge preggos sitting in bed next to each other!  I wish SO much that I got someone to take a photo of us.  The nurse came in and was quite confused not knowing which one of us was the patient!  We still laugh about this.  Because she is a pastor she was able to stay past visiting hours.  It was good to be with her.  Then thanks to Ambien, I slept.

The next morning they told me that I would be having my baby around noon.  It was a Friday.  Bob got up to the hospital not long before I had to start all the prepping for the c-section.  Like any surgery, it takes a while.  It's a lot of waiting.  I was not a glowing expectant mother anxiously awaiting the arrival of her baby.  I was nervous and scared.  I was fearful there was something terribly wrong with my baby on top of the fact she already had Down syndrome.  I was not happy that she did not have the extra 3 weeks to "bake" safely in my belly and get stronger and develop.   I had Bob take some photos of my belly... my last photos of me pregnant.  This made me very sad.



Then it came time for the c-section.  I had a c-section with Mattie.  This was no big deal to me.  My c-section with Mattie was a piece of cake, honestly.  I recovered quite quickly.  So that part did not make me nervous at all.  They wheeled me in.  I was "paralyzed" at this point from the waste down.  There were heart surgeons in the room ready to whisk Julia away to immediate heart surgery if necessary.  There were generally a lot of people in the room.  Operating rooms are horrible places.  They are bright and they are cold and they are sterile.  Fortunately, the nurse I had was so awesome!  She talked me through everything.  I had told her that I am not grossed out by any of the details and that I wanted her to dictate to me everything that was happening.  I love hearing the play by play of what's going on.  I want to know!  She told me what the doctors would say right before they pulled the baby out so I could be listening for that.



And that is exactly what happened.  I don't remember what those words were, but I remember hearing them and then hearing Julia's cry!  I was SO happy!  Her cry was SO STRONG!  It was LOUD!  This was not a weak baby!  She was a fighter!  Before I got to see her a group of doctors and nurses had to analyze her and check her out on a table I could not see.  No, I didn't get the beautiful moment of holding my baby the moment she was born.  Bob was able at this point to go over and see her.  He came back to report that she was NOT 4 pounds.  She was 6 pounds 7 ounces!  The ultrasound techs were SO wrong!  They were off by almost 2 pounds!  Bob said to me, "When I saw her I said to myself, 'That's no 4 pound baby!'"  I was so happy I cried and cried.  She was going to be okay!   And the other thing Bob told me... she has RED HAIR!  I could not believe it!  I was elated!  It was such a joyous moment for me.  I was so relieved.  I was praising God and I had hope for our future with Julia for the first time.  Her Apgar scores were high- 9 and 10!  We were going to be okay.




And then I FINALLY got to meet her and hold her myself.  She was beautiful.  And Bob was by my side.


That day I it was a good thing that I had no idea what the future would hold.  That is God's Grace.  So here we are 3 years later.  Though I know I think about Julia every single day, I don't think of her quite as often and with the same amount of length and intensity.  I used to be very aware of the 18th (her birthdate) and the 8th (her death date) every month that passed.  And I used to count the months since her birth and her death.  I don't really do that anymore.  Life has moved forward and there has certainly been some healing of the wound in my heart.  However, certain things will trigger memories and I will get very sad.  Or I will think of her and my eyes will tear up.  Thinking of Heaven and being separated from her can make me cry.  Songs of Heaven make me cry.  But most of my days are busy and happy these days.  Mattie helps with that a lot.  I have jumped into her life with 2 feet and she and Bob are the center of my universe.  After loosing a child it makes one remember what is truly important.  I try not to take my time I have with Mattie or Bob for granted.


We had a nice day remembering Julia today as a family.   Mattie had school in the morning and we had her parent-teacher conference at 11:30am.  Bob got laid off last week so he was now free to spend the afternoon with Mattie and me.  So we had lunch out at Mattie's pick, McDonalds, and we headed to Mt. Hermon to visit Julia's special bench.  We have been so appreciative to have that bench as a place we can go to remember Julia. It is such a beautiful setting in the woods- a place that fits our family perfectly. Because it is outside in the woods, it naturally gets very dirty. So today we brought cleaning supplies and we all worked together as a family to make Julia's bench clean and shiny and a welcoming place others can sit and enjoy. It was great. Even Mattie was very happy to chip in.  







I posted on Facebook photos of the bench earlier this evening.  One of my Facebook friends whom I have not seen in over 8 years sent me this message: 

Valerie, I just saw the photos of Julia's bench. Our family has sat there several times, not knowing it was your daughter's. And, also not knowing whose family it was, I have prayed for "the parents" and the weight of losing a precious child, for the possible strain on their marriage, and for the extended family this would undoubtedly touch. I can't believe I'm learning now that I have prayed for you, completely unknowingly. I hope this will bring you some unexpected blessing today - of most difficult days. Lots of love to you, your sweet family, and of course your two very precious girls.

Her message to me meant so much!  I have often wondered if when people sit and rest on that bench if they even read the plaque that was on it.  Additionally, I have wondered if they read the dates on it and made the connection it was a memorial bench for a baby.  It warmed my heart to know that at it had touched at least one person's life and it even happened to be someone I know!  So there must be many others whom I don't know.  To that I am thankful.  It makes me happy that Julia is remembered, even by people who don't know who she is.

Happy birthday, precious Julia.

Monday, October 27, 2014

"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.

Sunday, February 9, 2014

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!








Saturday, February 8, 2014

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


Monday, January 27, 2014

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.

Saturday, January 25, 2014

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.








Thursday, May 9, 2013

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.

Monday, February 18, 2013

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.





Sunday, February 10, 2013

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

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

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

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

Here is Bob and me at the bench:


Saturday, Feb 9th.

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



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

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











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


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

Tuesday, January 8, 2013

11 months ago

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

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

I miss her.

Monday, December 3, 2012

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.  

Saturday, November 17, 2012

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.