Blogging...

I have been frustrated with myself in the past few weeks that I have not been on top of my blogging. I now have a running list of things to blog about in which I have not seemed to have time or make time to do. I was reflecting on why this might be:
A) I'm tired of blogging and wanting a break
B) I am procrastinating blogging
C) I finally have time to spend with my husband after Mattie goes to bed and it feels great to just "veg" out in front of the TV or soak in our hot tub (which I couldn't do when pregnant.)
D) I just am not making the time to do it... the tyranny of the urgent. It seems like there is always something more important to get done.

But I think one of the primary reasons is that I am no longer pumping. There was something actually sacred about the 20 minutes that I had to spend 5-7 times a day. It was a time I was "trapped" and not able to do anything but SIT. I don't sit very well. Also, the times in the middle of the night when I was sleep deprived seemed to be my most contemplative times. I am also not in crisis at the moment. I am in recovery. I have discovered from my miscarriage last year and my journey with Julia that when I am in crisis, my first response is to reach out to others. I don't implode, I explode, so to speak. I am an external processor through and through. Blogging was healing for me. I kind of miss the time I had... though I hated getting up in the middle of the night and in the early morning, those were wonderful times alone, by my self, in the quiet. Time to think. I have pondered getting up early to have that time every morning... I've never been very disciplined about the "quiet time thing." But I'm thinking about it. (The thought of setting an alarm when I don't have to just seems so wrong!)

Anyway, some of you have told me you are still checking the blog. I am so glad you are. It helps keep me going. I just know that I have about 5 posts that I WANT to get out and haven't yet. Don't lose hope.

And thanks for reading and journeying with me.

"Where's Juia?"

On Sunday, at church, Mattie ran into one of her little friends whose family has been a close part of our journey with Julia. Her friend says, "Mattie, where's Julia?" I was very curious what Mattie would say. She says matter of factly, "She died." and then she ran off with her to play. It was such a 4-year-old thing to do. It seemed "cold" by adult standards, but it actually brought me comfort. I was glad to see that Mattie does comprehend that Julia died but that she is able to move on and be with her friends having fun.

"What?!? Josh is in Heaven?!?"

Yesterday I was at my friend Karie's house with Mattie for a playdate. Karie and I were sitting on the couch chatting and the girls were playing about 10 feet away with some little animals. We were talking about a playdate we had just the day before at our friend Emily's house. They had a new electric Jeep that the kids could drive and Mattie's little buddy Josh was in love with this car. We were laughing about how well he could drive it and what a "boy thing" it was. Then I quipped, "Yah, Josh was in "Heaven." Mattie, without missing a beat, whips around and says with wide eyes, "Josh is in HEAVEN?!?" Oh my poor sweet daughter. After losing Julia and processing Heaven with her, that was the WRONG thing for me to say! I had to try to back peddle and explain that NO, Josh is NOT in Heaven. He is just fine. That it was just a saying. I felt horrible and and yet it was funny (and not funny!) at the same time. The things we don't even think about. Words just come out of our mouths. Phrases we throw out every day that mean nothing. However, to a 4-year old who is processing the death of her baby sister, a phrase like "Josh was in Heaven," is alarming and shocking. She was afraid she just lost one of her best friends, too. The bottom line is that it is sad that Mattie has had to process what Heaven is at 4 years old. That a phrase like "I'm in Heaven" or "Josh is in Heaven" can not be used without Mattie being a bit confused and alarmed because she had lost someone she loves. That makes me sad.

Two weeks ago today...

It was 2 weeks ago today that Julia took her last breath in my arms. I found myself feeling sad today. Bob's mom, Sally, also left today so there is no one left staying with us. We've had grandmothers staying with us the last 3 weeks. It is time to figure out life again. In many ways, it is just back to "normal." It is more normal to have just 3 of us in the house especially since Julia was in the hospital so much. But the house felt empty. I keep thinking about her. Songs from the memorial have not left my head or my heart. I felt tired today. I haven't been sleeping all that great. I long to hold her again. To look into her eyes. To kiss her and brush my face against her sweet cheeks. I miss her.

Email 2/21 "I've been thinking about you and feeling thankful."

Dear Friends and Family,

It’s been 3 days since Julia’s memorial. It was a wonderful service. I was truly blessed by it. So many wonderful people stepped in to help make it beautiful. There were probably about 200 people there and had it not been a holiday weekend, there may have been more. I have been reflecting on how abundantly blessed I am to have the support network that I have. No one should have to go through what we went through in losing Julia. No one should have to bury her child. But then again, no child or person should ever go hungry or be abused or have to suffer in any way. But in the world in which we live, horrible things happen every day. There are so many circumstances in which we have little to no control. So in the midst of pain and suffering, it is God and the people surrounding us that get us through. Mattie, when on a walk with her grandma Sally, told her, “Julia is in the upper Heaven and I am in the lower Heaven.” And while this Earth is full of yucky things that do not in any way resemble Heaven, it is the people and true community that are a reflection of Heaven and a reflection of God’s love. It is the Kingdom of God that Jesus talks about 70 times in the Gospels. I feel that I have felt a piece Heaven here on Earth as I have walked this incredibly difficult journey from the love of people. I can not believe how “over the top” blessed I am by the friends and family I have. I reflected on how many different circles of people came on Saturday to support us both locally and from out of state. I calculated at least 11 different circles of people who took time to come celebrate Julia’s life with us. Over the weekend, we were able to spend some wonderful time with the out of town family and guests who came and were surrounded by love. It dulled our pain. However, I know that darker days are ahead: after the chaos of the last 3 months has settled, when all the family has gone home, when the house is quiet, and I have more time to be alone and think. It will be as I put away the baby things that Julia used or never got to use. It will be when I see any little red-headed baby, or probably any baby for that matter. That is when I will feel Julia’s absence. Every 18th of each month, I will quietly think about her month birthday markers. Just last night, Bob said, “The house is quiet without Julia. I miss being able to hold her.” I miss her, too: her soft skin, her downy hair, her deep eyes, and her feisty cry. But I know I will miss her even more in the months to come when reality has settled in. So it will be all of you who will help fill the “Julia” hole in our heart (though the hole can never be completely filled.) We will need your love and some fun distraction. We will need you to cry with us but also laugh with us. I want to invite you all to “pester” us as much as you want. Please do not fear that you are bugging us or that we need more time to heal. We do indeed need time to heal. But healing can come when we have some fun in our lives. We have had a very rough 3 years… from infertility, to miscarriage, to losing Julia. We need to start to dream again, to laugh again, to live again. I invite you to help us. We’d love to spend time with you. Please feel free to talk about Julia with us. Feel free to text me just to say you are thinking or praying for us. If something reminded you of Julia, please feel free to share that with me… even if it is 6 months or a year from now. You can know, that I will be thinking of her... probably most every day for the rest of my life. So it won’t come as a shock to be reminded of her again. Basically, we are going to need your love and friendship even more in the months to come. And what brings me more comfort and hope than you can know is knowing that I have friends to lean on in the coming days, months, and years. I feel so thankful for the love you have shown us. And I know that because of your love and friendship we’re going to “make it” in the months and years to come. I am so thankful for my friends and my family. I am thankful for YOU!

I will continue to post to Julia’s blog in the coming weeks and months as I process her life and her death. So feel free to join me in my process if you would like at
juliaalexandrabrown.blogspot.com

Also, I want to invite you once again, if Julia has touched your life in anyway, to email me to tell me about it. It can be in the next days or in a year. Hearing about the impact of her life on others brings me such joy and comfort. Thank you for those who have already written me.

Again, know that I love you and am thankful for you.

Love,
Val

Karin's talk from Julia's Memorial

I’ve known Val for about three decades. Over the years we’ve walked with each other through numerous challenges and shared joys of dreams realized and tears over dreams dashed. But never could we have imagined the journey we’ve shared over the past year. And more than any other time in our lives, I have felt honored that Val allowed me to walk with her, to talk with her, to hope with her, and to cry with her. Never could we have imagined that our friendship would bring us to a point of being together as one of us watched her child breathe her last breath.

It’s easy to assume and to realize that Julia’s life changed Bob and Val and their family forever. Of course it did. It had to. But the impact of Julia’s life is far greater and wider than that. Each of us is here because we have been impacted by Julia’s life. Some of you were privileged to meet her in person. Others knew her through the emails Val and Bob sent and through the blog Val kept for her. But in some way Julia has touched your life.

Julia certainly deepened community ties. At the preschool Mattie attends, parents were regularly asking one another what they had heard about Julia and whether there was any new update. People’s conversations had a new depth because of their care for Julia and her family. Small talk lost its power as it gave way to concern for a life that was lived precariously.

And Julia called people into a deeper life of prayer. I know that has been true for me. Julia was so constantly on my heart and in my thoughts and my thoughts turned to prayer. It was easy to pray for healing and when it seemed the healing I longed to see was not the healing God was going to grant, I clung to the promise of Scripture that the Spirit of God would intercede for me when I didn’t know how to pray.

I know many of you experienced something similar. You found yourself praying more because of her. As you made meals or gave rides or hosted play dates or just found yourself thinking about Julia as you watched your own children or walked through the details of life. And I truly believe that when we spend time in the presence of our Lord Jesus Christ through prayer, we cannot help but be changed.

And it wasn’t just people who shared faith in Christ. There were those who question whether God exists that found themselves praying for sweet little Julia. Such was the impact of Julia and the love Bob and Val demonstrated for her through so much time spent with her during the long days at the hospital and visits to her after long days at work for Bob.

Julia touched the hearts of young children, those that know Mattie or know the Browns in some other way. But Julia also touched the hearts of the hospital staff and the doctors. She changed those who knew her.

I’m sure that as stories are shared it will be clear that Julia, who so badly needed healing herself, brought healing to the lives of others. I don’t mean to sugar coat anything. No impact or meaning can eclipse pain of her struggle, the reality of her death or the sadness of absence. But it does call us forward to honor her short life by allowing the ways she changed us to carry forth. To continue in our life of prayer. To continue in relationships of depth. I know that I want to continue to turn more quickly to prayer as I did and thereby honor Julia’s life and death.

Flowers from the memorial

Thoughts on Julia by Karie

Here is what Karie shared at Julia's memorial.

My life has been interwoven with the Brown family for sometime now. Val and I have been friends for at least 8 years. At my wedding she was a singing bridesmaid. Bob was present the evening I met my husband and subsequently played the bass at our wedding. Their daughter Mattie and my daughter Claire have been friends since they were babies. And recently I had the privilege of meeting Julia.

Some may ask what impact a 2 1/2 month old baby could have? Personally, I can say Julia’s influence has been immense. Even as God wove Julia in her mother’s womb, she triggered deep soul searching in me. Anticipating Julia’s arrival and all the unknown factors around the challenges she and her family might face, reminded me of my own childhood loss. When I was 8 and my brother was 5 he died from a battle with leukemia. I recalled grief, hospital visits and staying at my grandparents a lot.
My childhood experience and the unknowns surrounding Julia spurred me to ask: Will I be able to be a strong support to my friend? Have I healed from my brother’s death so long ago? What have I done with my pain? If the worst happens can I handle it?
With these concerns, I sought counseling well before Julia was born. I discovered that I was still carrying around an 8 year old’s perspective, living in a world where I didn’t want to cause people pain. While rethinking my past sorrow and implementing healthy ways to grieve, deep healing ensued in my heart .
I’m humbled to think God used such a tiny person before she could even speak to stir thoughts that have laid buried deep in my heart. Before Julia was named I prayed for her affectionately as “Blessing” because of the worthwhile, hard, but good work God was doing in me through her life.
Julia ushered in understanding and God’s peace. I tangibly found that pain doesn’t permanently exclude joy. It is a privilege to have met and held Julia. She’s a cutie. Though I don’t get to know the entirety of Julia’s purpose from God’s perspective. Julia reminds me of what a miracle life is and it is a blessing to have this moment.

Pastor Brian Morgan's Message from the Service

Brian Morgan’s Message for Julia’s Memorial
Special Delivery
From: Julia Alexandra Brown
To: Mom and Dad
February 18, 2012
Dear Mom and Dad,
I heard that you’re having a special party today to celebrate my life with family and friends and those special, professional people who became my family at Stanford Hospital. As you think and talk about my life I asked your pastor (rabbi) if he’d mind sharing some of my thoughts with you.
First, I want you to know what a blessing you were to me. It wasn’t until I got here and heard some stories from other children, that I learned how blessed I was. Though my time with you was short as people count it, every moment of my life, from the nine months we got to know each other in your womb and then for the next 83 days after I was born, the only emotion I felt was love in all the ways I think anyone could imagine.
I’ll never forget passing through the hard time of labor and awakening to a new world of light and color and seeing tears of joy in my own mother’s eyes. And even though daddy could hardly speak, when he touched me with his strong hands, I instantly knew how much he loved me. And then of course, there was my energizer-bunny big sister, Mattie, front and center. Wow! (By the way, when you get here with me, you may have a hard time telling us apart, at least from our looks. Our hair is identical, but you’ll be glad to know, I did get some of daddy’s more laid-back genes). When I first met Mattie, I couldn’t miss her big, big love for me. But I was a little afraid some times that she might try and grab me, and then toss me up into the air like one her stuffed animals. But, Mom and Dad, you were both always there to protect me and keep us calm.
After those first days it seemed as if I was the only one in the room for everyone I met. I just thought this was the way every baby is welcomed. People were so concerned about me and the ways they loved me never stopped. I thought for sure that they all had to be my relatives. I was thinking that I must belong to one of those gigantic families, like Judah or Naphtali, which I have now been able to read about in Israel’s Bible stories. After I got here, I was surprised to learn that these people were not related to me at all, but were people who worked very hard to learn how to take care of kids like me – doctors, nurses and counselors, who had hearts much bigger than the hard work that had to do.

 When the first report came in after I got her, I was really surprised to find out that my “love quotient” (which is how much love I got for every hour of my life) ranked me in the top .1% of heaven’s population. In recognition of your love, I was given a special scarf of many colors, like the coat Jacob made for his son Joseph. It looks so great with my red hair.
These wonderful workers may think that I’ve since forgotten them, but I’ll never forget them. When we kids feel helpless and in danger, the loving face of one of those adults who lean over us to protect and care for us is a face we’ll never forget. Now that I am able to understand and talk about my emotions, I want to say, “Thank-you. Thank-you. Thank-you.” Forgive me for not knowing everyone’s full name and title, but in heaven we just go by first names.
Thank-you…
Renee – for the many ways you loved me;
Mandi – for checking to see how I was doing– around the clock;
Jane – for sending mom and dad chicken soup after my 2nd discharge;
Alex – showing me HOW MUCH you cared about my heart;
Michelle – for taking such good care of me the first time I was looked over;
Seth and Justin– for wanting to do anything and everything to save my life;
David – for telling the truth in a loving way, when you had to talk about the painful news about my heart to my Mom and Dad;
Chesney – for giving mom your personal number to call after we went home;
and Michelle – for your wonderful, loving words and your wise advice to my sad, sad parents.
God told me that he’s going to do something special for you for the way you loved and cared for me, for Jesus said, “whoever welcomes one such child in my name welcomes me” (Matt 18:5). In God’s family, the really great ones are the one’s who love and welcome the one’s who can’t give anything back.
I also found out what happens when people pray really hard for you. After the second time I left the hospital, I felt my body working too hard to survive. Then suddenly I felt something pouring into me that felt like an electric surge of new life – much more than all the other days before had felt. For two days I felt like I was in a dream, for two days I was home, really home, held up by more love than I could imagine. I was cradled and carried by my two grandmas, my red-headed Uncle Branden, Mattie, daddy and mommy, who by the way, never stopped kissing me. While all this was happening to me, another kind of angel kept Mattie busy in the den with an easel and finger-paints.
And what’s more, a professional photographer showed up and took family photos for 2 ½ hours like we were a king’s family. I thought to myself, “If this is what happens when you are born, I can’t wait to see what birthdays will be like!” And then just as that surge of life had mysterious energized me, so it seemed to leave without warning. I was in big trouble, and I could tell everyone in my family knew. My time with you was running out, but your love did not run out.
To my surprise your love took on a depth and sweetness that made even the angels gasp. I discovered that when people come to end of all they can do, they become still, their hands go limp, but their eyes get shiny and glow like rivers of living water coming up from the deepest part of their souls flooding down their cheeks. The last thing I remember on earth was looking up into your eyes, Mommy, with tears, tears falling like little jewels from your eyes. Sadness and love flowing down wound together.
I’ll never forget going through a dark kind of night, so silent and then awakening to the sound of a shepherd’s voice saying “Talitha koum! Daughter, arise!” He took my hand and I stepped into a new world of light and color beneath a massive rainbow of God’s unfailing love.
This New World is hard to describe, because no matter where you look it’s so beautiful, you tingle all over. Every view takes your breath away. It is the very best of our world, with all of God’s heaven mixed in. The colors, well I can’t describe them, and every sound is like angels singing. But nothing compares to music I’m hearing and the songs I’m learning. There are choirs everywhere singing songs in every language of our world. On my first day I happened to stumble on the final rehearsal of an African children’s choir preparing a special number for their parents when they arrive.
Then today, just before your party, an angel brought me back through time and space, three thousand years to Jerusalem, where Israel’s most beloved singer, king David, was preparing to sing a special portion of one of his psalms just for me. You know the song as Psalm 139, but today he renamed verses 7-18 “Julia’s Song.” As he sang, the God breathed words filled my new, strong and healthy heart with so much power and feeling, I thought I would burst. I can’t sing the song yet, but perhaps if the kind rabbi will read the words, you’ll experience something of what I felt, for David’s song is now my story. And I can’t wait for you to get here, so I can sing it to you. For I, Julia Alexandra Brown, am so proud to be your daughter.
Love,
Julia

Julia’s Song
Psalm 139:7-18
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I ascend to the heavens, you are there;
if I spread out my bed in the grave, behold you!
9 Were I to rise on the wings of the dawn,
and alight on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.

11 And then I thought, “Surely if darkness crushes me,
and if the light becomes night around me,”
12 even darkness is not dark for you;
and the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
(Psalm 139:7-18 Bruce Waltke’s translation)

Bob and Val's Eulogy

Eventually, we'll try to put the video on YouTube so you can see the videos. Here's the text.

Julia Brown’s Eulogy
BOB
We would like to take a moment to thank all of you for being here today to support us and celebrate our daughter’s life. Today would have been Julia’s 3rd month birthday. You have showed your love to us in many tangible ways. Thank you.

VAL
Our time with Julia was way too brief. Only 82 days. But there are things about her that made her who she was. She was beautiful. She had bright red hair (we couldn’t believe God gave us another red head!), she had porcelain skin, and steel blue eyes. She was also full of life and personality. Most of you never got to meet her. So we want to give you an opportunity to meet her and get to know her through our eyes.

She was a fighter. At 15 weeks pregnant, she first made her presence known to me. She didn’t stop wiggling and kicking me until she was evicted at 37weeks.


She continued to make her presence known even more after birth! Several times when it was thought that Julia might not even make it through the night, she would start to improve.


BOB
One of the ways Julia made herself known was her strong cry!

Her cry was one of her most recognizable talents. She was small but her cry was mighty! After Val’s last routine ultrasound at Stanford, it was decided by some doctors to admit her that very afternoon because they thought that Julia was measuring small at only 4 lbs 12 oz. The next day, when Julia was evicted by c-section, it was her strong cry that gave us a sense of relief that she was indeed okay. To everyone’s surprise, she ended up weighing 6 lbs 7 oz! The nurses and doctors at Stanford also came to know Julia by her strong cry. During times when Julia was particularly unhappy and letting everyone know about it, nurses and doctors would poke their heads in Julia’s room and tell us that they could hear her all the way at the other end of the CVICU. We want you to be able to hear it, too. Here’s a video clip. (Show video)

VAL
Julia had such an expressive face. It was obvious she had plenty of personality from the day she was born. One talent I noticed she had from early on was the ability to raise one eyebrow, and it seemed she could do this with either one. I found this most impressive since neither Bob nor I can raise one eyebrow. I was sad that I never was able to catch this on film. She was just too quick. Another quirky habit of Julia’s was only opening one eye when she wasn’t sure if she wanted to be awake or not.


And it wasn’t always the same eye. I started calling her the “one eyed wonder” from one or two weeks of age.

However, it was the way Julia looked people right in the eyes that touched my heart the most. She started gazing at faces and looking into our eyes at around 4 weeks old. As the days and weeks past, she became even more expressive and more communicative with her eyes.


If anyone were speaking to her, she would gaze right back at them as if she were responding to what they were saying. Bob, the grandmothers, and even the nurses and doctors commented about Julia’s expressive eyes.

BOB
Mattie loved her sister deeply from the moment she found out Val was pregnant.


She was so excited to become a big sister. She came up with many names for her sister such as Alice (the name of Angelina Ballerina’s best friend,) or even better, Candy Cane Trick or Treat (Candy Cane being the first name and Trick or Treat being the middle name.) The birth of Julia brought out a soft and tender side of Mattie that we don’t always get to see. Here is a video of Mattie meeting her sister for the first time. (Show video clip)

Even through the love and sweetness, there was still some sibling rivalry.

Here is a photo of Mattie holding her little sister and smiling sweetly at the camera.

Notice what Julia is doing. Yes, that is Julia sticking her tongue out at her big sister. But it wasn’t always one way.


Here is Mattie, giving her sister a bit too much love, patting her sister on the head a little too hard.

VAL
Julia was in the hospital a total of 8 weeks of her 11 weeks of life. Her longest stay at home was the 3 weeks after she was discharged from the hospital the first time. It was a rough transition.


Julia struggled to eat and we had to feed over half her feedings by the tube in her nose- her NG tube. Mattie liked to imitate her little sister and creatively came up with a nose tube of her own.


As we transitioned to being at home with Julia, feeding her required us to set the alarm and stick to a strict round- the-clock feeding schedule. We were quite exhausted. Allow us to demonstrate by showing you one of my favorite video clips involving Bob, Julia, Mattie, and our cat. (Show video, go to black)

VAL
Despite all the hardship, Julia brought so much joy to our lives. We hope you now have an even better understanding of what a beautiful and delightful little girl she was. Thank you so much.

Quote from Madeleine L'Engle

Quote given to me by my friend Julie. The original said "dolphin." It was replaced by "child."

“The earth will never be the same again
Rock, water, tree, iron, share this grief
As distant stars participate in the pain.
A candle snuffed, a falling star or leaf,
A (child's) death, O this particular loss
A Heaven-mourned; for if no angel cried
If this small one was tossed away as dross,
The very galaxies would have lied.
How shall we sing our love's song now
In this strange land where all are born to die?
Each tree and leaf and star show how
The universe is part of this one cry,
Every life is noted and is cherished,
and nothing loved is ever lost or perished.”

― Madeleine L'Engle, A Ring of Endless Light

Dreaming of Julia...

3am. Awake. I woke up dreaming about her. I can’t stop thinking of her. I picture her in my head. Her sweet face. Her beautiful expressive eyes. Her long eyelashes. Her chubby arms. I can still feel her soft skin. Her downy red hair. I can’t believe she’s gone. Numb.

I keep playing her death in my head. Her final moments are so vivid.

Gone Too Soon prayer

This prayer was given to me by a woman in the Silicon Valley Down Syndrome Network.

Gone too soon Prayer
“I’ll lend you for a little time a child of mine,” He said.
“For you to love the while he lives and mourn when he is dead,
“It may be six or seven years, or twenty-two or thirty.
“But will you, till I call him back, take care of him for me?
“He’ll bring his charms to gladden you, but should his stay be brief,
“You’ll have his lovely memories, as solace for your grief,
“I cannot promise he will stay, since all from earth return,
“But there are lessons taught down there I want this child to learn.
“I’ve looked the wide world over in my search for teachers true,
“And from the throngs that crowd life’s lanes I have selected you.
“Now will you give him all your love, nor think the labor vain,
“Nor hate me when I come to call to take him back again?
"I fancied that I heard them say: Dear Lord, Thy will be done!
“For all the joy Thy child shall bring, the risk of grief we’ll run.
"We’ll shelter him with tenderness: we’ll love him while we may,
"And for happiness we’ve known forever grateful stay.
“But should the angels call for him much sooner than we’d planned.
“We’ll brave the bitter grief that comes and try to understand.”

Homesick by Mercy Me

You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now

Julia's last day... Earth-side

Recalling Julia’s final day… Earth-side

Julia had been agitated the afternoon before starting at around 4 or 5pm. She just couldn’t “settle.” Her head would toss, her arms would flail, her legs would push against me. I ended up giving her some anti-anxiety medication to help her relax. Her respiratory rate had increased. But this was not too unusual. She had just had 2 really good days. She had been alert and had been connecting with us through her eyes. She finally fell asleep in the arms of my mother being rocked in the rocking chair. Later that evening around 7pm, I had to give her more antianxiety meds as she became wrestless again. Meanwhile, Bob left for the airport. He had a big meeting in LA for work the next day. It was not just any meeting. All the executive staff were going to be there and Bob was going to make a 30 minute presentation. It was an fun and exciting opportunity for him. I encouraged him to go. Julia had been doing so well. Who knows how long she would have… days, weeks? We couldn’t put our life on hold for the unknown. So he left. At 10pm, when Julia was still not settling, I gave her methadone, an anti pain med that stayed in the body for a good 6 hours, so that she could sleep. Finally, she fell asleep. The middle of the night was tough, too. She woke up when I had to change her feeding bag. She was wrestless again. She seemed uncomfortable. Her respiratory rate was still high. I was exhausted. I was spent. I found myself being agitated toward her. Couldn’t she just sleep? How much longer could I do this? How long would she go on like that? I hated seeing her that way. I gave her another dose of methadone. Sleep came again. Then that morning when I woke up, Julia’s breathing was different. Her respiratory rate was slower, but her breaths seemed much more shallow. She was sleeping. That morning is a blur. I had to get Mattie to school. She wanted to stay home in her pajamas so I had to focus my attention on getting her ready. I also had to go into our local school to register Mattie for kindergarten. I had to get home by 10am because the hospice nurse was coming by to check on Julia. My brother was flying in at noon to come meet Julia. There was a lot on my mind. When I got home, Julia was still sleeping in her bed. My mom didn’t want to disturb her. Her breaths were still the same, slower and shallower. The nurse came and checked her out. She confirmed that Julia was mostly breathing with the top of her lungs and not much or any air was moving in the lower part. She said that the end would be coming in the not too distant future. But with Julia, it was hard to know what that meant. Doctors had thought she had “days” or even possibly “hours” before. Julia was a fighter. She always ended up improving. I didn’t know what to think. I could tell, however, that she looked weak. She looked tired. She did not really wake up. Her body was pretty limp. It was like how she had been when we took her home from the hospital 4 days previous. She didn’t look good. It soon became time to pick my brother, Branden, up from the airport. So I handed Julia into the arms of a grandmother and headed off. I picked up my brother, we grabbed In and Out, and came home. Branden got to hold her for a bit. I took pictures. I’m so glad I did. I had no idea that Julia’s time was going to be so short. At 2pm, my brother and I picked up Mattie from school. Mattie absolutely adores her uncle, or “Unc” as she calls him. They spent the afternoon in the hot tub and playing. My mother in law, Sally, was holding Julia on the couch and I was next to her getting caught up on emails and blog posts. A little before 4pm, I looked over at Julia. Her breaths were getting even shallower. I was concerned. I took Julia from Sally and held her. Sally suggested I call the hospice nurse. Good idea. So I did. She would be able to be at our house in 30 minutes. What do I do about Bob? I didn’t know. I knew he was supposed to present at around 3pm. Do I call? Do I have him rush back home? What if she limps along in this state for the next 3 days? He’d be back the next day. I was torn. I watched her breath. I was scared. I had a large rock in my stomach. My sweet Julia was not looking good. Her breaths became so weak. She would even stop breathing for a few seconds from time to time. Bob wasn’t going to be able to make it back. The end truly was near. Oh Lord! I just sat there spellbound by every shallow breath. I held my breath every time she stopped breathing for a second. Then she would gasp. It was horrible to watch. I called my friend, Karin and asked her to come over. We grew up together and now she is a pastor at the Presbyterian church where Mattie goes to school. She has walked the difficult road of Julia’s life with me. Her daughter, Hope, was born 5 days after Julia. I asked her to come over. Both Karin and the hospice nurse arrived within minutes of each other around 4:30pm. The hospice kept listening to her heart. At around 4:40 or so, the nurse told me that Julia’s heart rate was slowing down and that I should hold her close because it wouldn’t be long. Oh no! Bob! What do I do? I was so scared. I texted Bob and told him that he needed to leave his meeting and call me right away. He called. I talked to him on the phone and told him it would be very very soon and that he was not going to make it in time to see her. He said he would get on the next plane. I held the phone up to Julia’s ear and had him talk to her. It was during this or right before that her heart stopped beating. After I hung up the phone, Sharon, the hospice nurse informed me that her heart wasn’t beating any more. I couldn’t believe it! She was really gone! I was numb. How could that be? I held her and kissed her and told her how much I loved her.

To be continued…

Julia is Home with Jesus

Julia passed away at 4:45pm on February 8th.

Revelation 21:4-5

My friend sent me some Bible verses in a card and I wanted to post this one. I know that one day Julia will be NEW in Heaven.


Rev 21:4-5
4 ‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

5 He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

The ups and downs of the end of life...

Yesterday and the day before, Julia was a new baby. She was bright eyed and alert and stronger. A true gift! A stark contrast to how she was the day we brought her home from the hospital last Saturday. She was limp and weak and not looking good at all. It was like I had my baby back the past 2 days. Yesterday, when we went to see the cardiologist on the heart failure team at Lucile Packard Children's hospital, even they were pleasantly surprised to see how well she looked. They suggested that we think long term until Julia gives us reason to think otherwise. However, yesterday late afternoon, Julia became very agitated. She was not very consolable. Her respiratory rate had significantly increased and her breathing was more labored. I tried to give her some anti-anxiety medication and that helped just a bit. As the night progressed and she continued to be agitated, I gave her some methadone. That seemed to help a bit. I had to give her a second dose of that at 4am this morning. Her respiratory rate continued to be high even in the middle of the night. Then this morning when I woke up, her respiratory rate had decreased significantly, but her breaths are much more shallow. She has been sleeping all day and is rather limp. The hospice nurse came by this morning. She said it could be closer to the end and Julia could just be tiring out. She said that when people are near death, they can sometimes rally and seem to make a small comeback before their body finally gives out. With children it is much more unpredictable. It is so emotionally so exhausting and draining. I am so tired- both physically and emotionally. So I don't know how long we have. She doesn't look great. Saturday is Bob and my wedding anniversary... I am hoping that she holds out until after that.

Julia's uncle Branden comes to town

I am so grateful I took these pictures the moment my brother got to our house (he just flew in from Seattle.) At that moment, we had no idea that our time with our sweet Julia was so short.

(Now you can see my family's evidence of the red-hair gene.)

The family bed

Last night at 2am, the feeding pump started beeping to tell me that Julia was out of milk. So I got her more milk and as it was warming up, I changed Julia's diaper. This woke her up. Her eyes were WIDE open and she was looking all around. After I got her milk going, I tucked her in her blanket and she just kept looking up at me with these eyes that said, "Hold me, Mama!" How could I resist? So I unplugged the feeding pump from the wall (it will run on batteries for many hours) and brought it and Julia over to my side of the bed. I then propped Julia up on my pillow and got in bed next to her. Julia likes it when I cradle her head. So I snuggled next to her cradling her head and giving her loves and kisses. She remained quite alert soaking in the love. Then after about 10 minutes, I heard Mattie calling out from her room. Bob went to go check on her and before I knew it, they both came trotting back into our room and crawled into bed. She had a bad dream. Now there were four of us in bed. Typically, I would have been annoyed at this situation because it meant I wasn't getting sleep, but this time I was trying to soak in every minute. I was on my side with my left hand cradling Julia's head and my right hand reaching over holding Mattie's hand. I didn't know if it would be the last time we would all be together like that in bed. I had my two daughters snuggled up next to me. It was wonderful and blissful and sad at the same time.

A bright new day...

Lamentations 3:22-23

22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.

It has been a wonderful day today. Julia was doing so much better today. It was amazing. She spent several extended periods with her eyes open and alert. She would gaze into my eyes like she used to and track. She seemed to be stronger. This morning she even let out a small cry like she used to. She even grabbed my mom's thumb tonight. Her coloring is pretty good. These are all things we have not seen in the last 2 days at all. It was just so wonderful to see her beautiful blue eyes gazing in mine again today. I thought I had lost her forever.

Julia has been pretty much held by someone 16 hours of every day since she's been home. I think this is what is making her feel so good. She just gets passed around from grandma to grandma to Mama to Daddy and back again. Today while the grandmas were at ballet with Mattie, I turned off Julia's feeding and held her down the hall in my room while I put away laundry and talked on the phone. She just joined me in whatever I was doing. Her eyes were open the whole time taking everything in. It felt so much more "normal." These are the kinds of things I should be doing with my baby. Free from being confined to one place. It felt good.

First day back home...

We had an okay night last night. Julia slept through the night. She has definitely taken a turn. She is tired and she has lost most of her spunk. She is not the same baby she was even 2 days ago. She sleeps most of time and barely opens her eyes. She works really hard at breathing. It is sad to see. But she does seem peaceful, in general. We have medications to help make her comfortable if she starts breathing hard. I don't know how long we have. A professional photographer came to the house today to take pictures of our family with Julia. She will not charge us. Such a gift. Julia was really too weak to take her nose prongs out. But this has been her reality for a while. Tonight, I feel like she is looking healthier than she was last night. I think being held all the time and loved and kissed and being away from the hospital has made her happier. When Bob was holding her tonight, she had her eyes open just a bit. She was looking at him and I swear we saw a smile.

I am feeling mostly ready to let Julia go. Of course, I don't think I can ever be really ready. I am scared. I have never witnessed death. And though I am confident that she will be going Home into the healing arms of Jesus, it is still scary. I love her. I don't want to watch her die. She is so beautiful and precious. But I don't want to see her hang on any longer than need be. I can't stand to see her suffer.

In the meantime, we will continue to hold her as much as possible, kiss her soft sweet skin as much as possible, love her as much as possible.

Pictures from discharge day...

Included: Picture of Julia's room in the CVICU, a visit from the Morgans, and a picture with one of Julia's doctors who really fell in love with Julia. Julia was finally discharged at 5:30pm. It's good to have her home.

I Have A Shelter... a song

My friend sent the lyrics to this song to me. They are singing it at our church on Sunday.

I Have A Shelter
Sovereign Grace (by Steve & Vicki Cook & Bob Kauflin)

I have a shelter in the storm when troubles pour upon me.
Though fears are rising like a flood, my soul can rest securely.
O Jesus, I will hide in You, my place of peace and solace.
No trial is deeper than Your love
That comforts all my sorrows.

I have a shelter in the storm, when all my sins accuse me.
Though justice charges me with guilt, Your grace will not refuse me.
O Jesus, I will hide in You who bore my condemnation.
I find my refuge in Your wounds, for there I find salvation.

I have a shelter in the storm, when constant winds would break me.
For in my weakness, I have learned Your strength will not forsake me.
O Jesus, I will hide in You, the One who bears my burdens.
With faithful hands that cannot fail, You’ll bring me home to heaven.

Julia may come home today... email update 2/4

Dear Family and Friends,

Julia is scheduled to come home today. It was determined that Julia had a viral pneumonia (lung infection) that was coming on when she was readmitted to the hospital. The day after she was admitted she developed a fever and her x-rays showed that she indeed had some infection brewing in her lungs. She has been fever-free for several days now and her lungs are looking better. This, however, does not mean in any way that she is “better.” It is our desire for her to have some time at home before she gets really sick and has to go back to the hospital for her final days (we really don’t want her to die at home.) We are feeling grateful that we may get some of this time with her. The night she was admitted, she did not look good and the doctors were uncertain how she would even do over night. She is such a fighter!!! She is small but mighty! (I wish I could include an audio recording of her loud cry! You can hear it at the other end of the CVICU unit!) It is very difficult to know how much time we have with her. That is the challenge of working with babies and kids. They can be so unpredictable. Their bodies are in the process of growing and not breaking down like adults. So children can beat the odds in ways that can baffle the doctors and us. The hard part for me is knowing how to pace myself. I feel like I am running a sprint with the chance that it could turn into a marathon at any point. And because it could be sprint and not a marathon, I do not want to ease up on my pacing so that I don’t lose the race (and miss out on time with Julia)… but then again, I can’t sustain at a sprinter’s pace if I indeed will be running much longer than I expected. It is emotionally exhausting. I think having her home will be good… but I am also scared, too. The hospital is a controlled environment with droves of experts surrounding Julia all day watching her every minute. We will not be going home without support, however. I can call the hospital at ANY time day or night and get a hold of a cardiologist on call. And we will also be signing up with a hospice care organization starting on Monday. Julia will be fed continuously with the pump like before and will most likely need oxygen support when she is home. The doctors here at Lucile Packard have been beyond wonderful. They have been so supportive of giving her the best medical care they can in combination with finding a plan that works best with our family in mind. They have involved us in their thought processes. They have been there to hug and cry with us. I feel like I have made meaningful connections with several of the doctors here. They love Julia. I have been so thankful for that.

I will keep you all posted as I can and as I have more to share. Until then, please check the blog because I will be posting there more often than sending out email updates. I have been trying to take lots of pictures and post them.

Thank you for continuing to walk with us and pray with us. I have been so surprised by the peace I have in my heart. It is certainly a peace that is beyond my understanding and can only be from God because you all have been praying. Please don’t stop. Please pray that Julia can be comfortable and peaceful. She is still working hard to breathe and can get very agitated from time to time which is really hard to watch. We will have medications to give her to help her stay comfortable as well. Please pray that we will get some quality time with Julia at home, especially for Mattie.

Much love to you all,
Val, Bob, Mattie, and Julia.

Pictures from today

Photos from today

Pictures I was trying to capture... A photo of our family taken the night Julia was readmitted (2 days ago,) Julia's pouty face (she has such a great pout,) Julia's eye lashes (so light yet so long!), Julia laying on a quilt my good friend made special for her, her hand and my hand.

Joy in my heart

I'm sitting next to Julia right now. She is doing "better" today. Her lungs look better, she no longer has a fever, and she is breathing with less effort. The doctors are pretty certain she is fighting a viral pneumonia. But she seems to be improving.

But that's not what I really wanted to talk about. I wanted to talk about the joy that is in my heart for her. I know it is God through the prayers of people that are holding me up. I have felt so happy to be with Julia today. I feel such pride and joy in my heart that she is my daughter. In an earlier post, I expressed how sad and conflicted I felt about Julia's Down syndrome. Today, I am not sad about that. I truly think she is one of the most beautiful little babies ever (with her sister Mattie being just as beautiful.) She continues to be so expressive and communicative through her beautiful blue eyes. She looks right at whomever is talking to her and "talks back" to them. There is a lot going on in that little mind of hers. I just feel really happy right now to be with her. I am so happy she is looking better and seems peaceful. I wish she wasn't connected to so many wires so I could hold her more easily... but I reach over and kiss her often and rub her arms and her cheeks. She is so precious.

The outpouring of people's love and support and prayers I *know* has been lifting us up and getting us through this time.

Wails and poopy diapers

I spent the night here at the hospital last night. I stayed with Julia until 12am last night until I was falling asleep in my chair (probably because I had slept in 2 rocking chairs facing each other next to Julia's bed the night before.) I got up at 6am to pump and then went to Julia's bedside. Not more than a couple of minutes after I got there, she started crying. And not just a whimper... but her loud angry cry. I love her cry. It is so distinguishable. It is strong! Her lungs may be struggling to breathe at times, but her cry has always been strong. It sounds just like the moment she was born and took her first breath- a moment that is so vivid in my mind. I started becoming very sad... I am going to miss that cry. I actually tried to soak in every wail so that I could remember it forever. (I have taken some video of Julia's cry on my iPhone.)

I started to comfort her. She seems to like it when I put my hand behind her head. I kissed her face and her shoulders. Then I went to pick her up... ew... wet! What was that? Poop! It was Julia's first blowout. And the silly thing is that I was so glad to be there for it. It was impressive. I called the nurse to assist me in changing her (there are so many wires and tubes I didn't want the poop to get everywhere.) It soaked through 2 blankets. Wow! So we change her and not 10 seconds later, she poops again... and a fair amount.

Oh my sweet precious Julia. I pray God gives me many sweet times with her today... even if those times involve poopy diapers.

The sad news about Julia... email update 2/1

Dear Family and Friends,

I need to write you with some hard news. I will give you the bottom line first and then I will also include the long explanation after that for those who are interested. You will have to bear with me. I originally wrote most of this email 4 days ago and was not expecting to have to send it out so soon so now I’ve had to drastically revise it. The bottom line is that Julia is dying. She has only a few days to weeks to live, most likely. We have known she could have a fatal heart disease for 3 weeks, but did not know for sure and we (nor the doctors) EVER expected that she would decline so rapidly. If we had known this, I would have sent this email out much sooner. She is currently in the hospital. I know this is devastating and shocking news. It is to us, too. We are coping. I truly believe that we are only rational right now and able to cope at all due to the prayers of all of you. Even when you didn’t know what was going on. God did. He heard EVERY prayer and He has been with us every painful step. We desperately need your prayers now! Please feel free to email but please don’t call at this point. I would love to know you are praying and thinking of us. Please understand, we will not be able to respond to many/any of them. It is hard to break away from Julia even to write this email. We are really going to need you once Julia is gone. She gets to be whole in Heaven and we are going to be left missing her. Please do not share anything with your younger children at this point. We are seeking counsel on how to handle things with Mattie and we don’t want her finding out anything from the comments of any of her friends. We want to be able to handle talking to Mattie ourselves. All right, this “bottom line” is becoming very long. I will continue to update her blog and update when I have a chance if there are any major changes. I might be silent for a while due to wanting to spend every spare moment I can with my beautiful daughter that I am going to have to say goodbye to… but it is not goodbye forever. One day we will be reunited with her and that will be a glorious reunion. She is going to meet her other 2 siblings whom I did not get to meet this side of Heaven before I will. She is going to be whole and she is going to be with Jesus. That is the good news.

Prayer requests…
• That we can make all the needed decisions and plans for the end of Julia’s life and for after she has passed away.
• That Julia would stabilize enough to be able to come home for a few days so we can enjoy some time together as a family
• That God would prepare and protect Mattie’s tender heart. She loves her sister so much.
• That the child psychologist would be helpful to us in preparing Mattie. We will be meeting with just her and then with her and Mattie all together in the next 2 days.
• That God would be giving Julia peace and comfort until she goes Home to Heaven.

Some logistical requests…
• Please do not call right now. Feel free to email us. However, we probably won’t be able to get back to you right away. Thank you so much for understanding.
• Please do not send flowers at this point. We just can’t manage them right now and we are not spending very much time at home to be able enjoy them anyway.
• If you would like to bring a meal, please sign up on our Mealbaby link. http://mealbaby.com/viewregistry/6406975
• At this time, we will not be able to have visitors at home or at the hospital. We are truly sad that so many of our family and friends will never get to meet sweet Julia.


The long explanation:
About 3 weeks ago, after the biopsy of Julia’s heart came back, a cardiologist on the heart failure team at Stanford told me that it was looking like a strong possibility that Julia had a heart disease called cardiomyopathy. Cardiomyopathy is a disease of the heart muscle. The type Julia would have is dilated cardiomyopathy. Dilated cardiomyopathy is a condition in which the heart becomes weakened and enlarged, and it cannot pump blood efficiently. The decreased heart function can affect the lungs, liver, and other body systems. It was something that they could not prove. There is no blood test or diagnostic tool to confirm it 100% other than a genetic test (and that is not 100% and takes 2 months to get results back.) We did end up getting Julia tested but obviously don’t have those results back. The way they might “know” more definitely is by Julia’s general condition. If she improves, if she gains weight, if her heart function improves… all of those could be a sign that she had an infection in her heart (recoverable) and not this heart disease (not recoverable.) The thing that baffled them, however, is that they have never seen the combination of Down syndrome, AV canal heart defect, and this rare cardiomyopathy all in one person before. The cardiomyopathy has nothing to do with the fact that Julia has Down syndrome or an AV canal defect. Cardiomyopathy is one of those weird things that can show itself early or late in life. However, in children, about one-third recover completely, one-third recover but continue to have some heart problems, and one-third die. The only real cure for this is a heart transplant. And unfortunately, no person with Down syndrome has ever survived a heart transplant. Since Julia has Down syndrome she is not a good candidate for one. And now, Julia does not even have enough time to find one if we wanted one.

So for the last couple of weeks, we’ve been holding our breath. Friday the 27th, the doctors and other medical professionals on Julia’s case sat down with me for a meeting. The cardiologist feels much more certain now that Julia indeed has cardiomyopathy. Julia had been showing slight improvement for a little over a week. However, this last week, she has shown a decline in her overall function. She was struggling to self-regulate her fluids in her body, she was having more breathing difficulties, and she has not been able to gain weight in about 3 weeks (it just goes up and down and has overall lost weight in the last 3 weeks.) She has been sweatier which is a classic symptom of heart failure. They did find a balance of medications and they were able to send her home on Saturday. However, over the weekend, I had been noticing that she was working very hard to breathe. She would make little “sighing” noises with each exhale. When we went in Tuesday (yesterday) for her follow up cardiology appointment, it was decided by 2 cardiologists on the heart failure team that she needed to be readmitted and monitored. I had a sinking suspicion she was doing worse.

What is her prognosis? Originally, (last Friday) the cardiologist gave her a range of 2 to 12 months with 12 months being generous. After listening to her breathe over the weekend, I started coming to the realization that it could be more like 2 months. She just didn’t sound good to me. The goal was to balance her medications (she is on 10 of them) as best as possible and have her home (and out of the hospital) as much as possible. Bob and I both agree we want quality not quantity of time with Julia. We are still hoping to get her back home so we can have some time with her before she dies. But now we’re down to days or maybe a week or two. So we’ll have to see.

How am I? How is Bob? I don’t know. We are in shock. We are numb. We are devastated. We don’t even know how we are doing. We are in crisis/survival mode. We are meeting with a team of people, including a child psychologist, to help us with end of life decisions. We are doing what we “have to do.” My mom arrived this morning and Bob’s mom will be flying out to support us also. Julia is working so hard to breathe even now… it is so hard for me to watch. Seeing her sweet face and thinking about all she has been through already and then thinking about losing her is almost more than I can bear. We don’t want her to suffer any more than necessary! I already have done some grieving when I first heard the potential diagnosis. I have been “preparing” myself these past 2 weeks but had remained a little hopeful. There’s no way to really prepare when you are in the reality of losing your little girl.

What about God? Well, since getting the possible diagnosis, I have mostly been praying for God’s mercy in this situation. I know that God could heal her completely. However, I also know that He knows the big picture. The main thing I prayed is that I didn’t want Julia suffering or struggling long term. I did not want to spend the next several years in and out of the hospital. That is no way to live for her or for us! I don’t understand why God allowed her to be born only to take her away so quickly. However, her life has been meaningful to us and to many others. She impacted people even before she was born. I know God has and still can use her small sweet little life no matter how short. I wish that we didn’t have to experience the pain of losing her. So I guess what I don’t understand is why did God allow US to have to go through this or why JULIA had to endure this. That I may never know. I do believe He will walk beside us the whole way - even on days when I am angry or beyond sad. I am glad I got to meet my sweet girl - my baby with red hair and fair skin and steel blue eyes. She is so beautiful. She is so alert and expressive. I am very sad I don’t get to see her grow up. I just wish I could protect my husband and my daughter from pain. Especially Mattie! I have no idea how losing her sister is going to impact her life. I may not know for years and years. That breaks my heart. I wanted her to have a sibling so badly. She loves her sister so much. For that I am angry at God. For that I don’t understand. Why God would take Mattie’s only sister away. That is hard for me.

So there you have it. It sucks (an understatement.) It is going to be really, really hard (another understatement.) We are loosing our baby girl. It is something I never thought we would have to go through as does no one.

We will be in touch with ways you can help us. We are going to need you. For now, we need you to PRAY!

We love you all and we are so sad we had to write you with this news.

Val, Bob, Mattie, and our precious little girl, Julia. Our sweet little girl who God allowed us to know for just a short time before taking her Home.