Saturday, May 31, 2008

Jose's Thoughts on Getting Back to Life

What a great idea, and goal to have. It's been difficult getting back to life and living in our “new normal." I have crazy thoughts sometimes, it’s as if Kirsten and I are living in a dream and this never happened to us. Then reality sets in and the severity of our situation zaps me out of my temporary happiness. At that point, I can only rely on God to see us through this. Watching Kirsten grieve and continually stride to be better and do better is a silent testimonial to me. It demonstrates that my darling wife is loving, caring and sharing God’s love with me and all of you. I guess as a man, I have begun to grieve in my own way. I have good times and bad. The bad seem to stick in my mind a little more. I tend to loose myself in my work as the “provider” but what importance does this have in the big picture? God will sustain us and will continue to provide for our well-being. I just desire to learn from this experience and have a much more grounded perspective on what is really important. (God, Family, Church, Relationships and Work). I guess there is only one thing to do “let go and let God do His thing” God Bless!!!!


Back to Life

This week felt a lot more like my real life. Jose' keeps getting surprised when I have dinner ready, laundry done, errands done, etc. all in the same day. There have been many days when I haven't had the energy or drive to do more than 1 or 2 things. It sounds strange to say it, but it is a "luxury" that I have had time and space over the last month to grieve. I've met many moms who have little ones who don't have that same "luxury" and it is difficult. Time and space has helped me regain my strength so that I can get back into life. I'm so thankful. I'm not "done" with my grieving, but I'm stronger.

Tomorrow we begin our Sunday School rotation. Jose will teach Grades 3-5 and I'll teach the 3-4 year olds. I love those kids and am excited to see them, but of course a little nervous too. I was pregnant the last time I taught. The kids didn't know that and won't remember. But some of the parents will and they may not have heard about our loss. The "first interactions" after loss can be awkward and difficult. We get through them but I never know what to expect. Tamara wrote a wonderful post about the words that comfort and hurt those who are already in pain. I highly recommend this for people who don't know what to say to someone grieving

On Monday I go back to work. I'm excited and nervous at the same time. More "first interactions." I sent an email to coworkers who knew about the pregnancy to let them know about our loss so they could "hide" from me on Monday if they wanted to. :o) I totally understand. I sent them the link to our blog so they could read the whole story. I knew I would break down if I tried to explain everything over and over. I love to talk about Chloe and share our story, but since I'm already nervous about returning to work that might have been too hard. I would really scare people if I had a breakdown in the copy room! I'm pretty sure my eyes will well up several times when I talk to people who understand and truly care and I'm OK with that. I'd like to prevent a sob fest though.

Yesterday I finally met, in person, my friend Jayne from perinatal hospice. We spent three hours talking and getting to know each other. It was wonderful!! She is so precious and was such a miracle in our journey with Chloe. I can't wait to see what God has planned for perinatal hospice in our area. I was so fired up after our lunch - and it has been months since I've felt like that. It was a great feeling.

Before I met with Jayne I read about the death of a baby to SIDS. It was another blow to a family that was already hurting. My head couldn't comprehend the fact that they had experienced another loss.

How would the children make sense of it?

How was everyone coping?

How could this happen again?

And so soon?

I know that God will bring good from all this and I'm not supposed to be able to understand His ways. But I can't even get a grasp on the facts - forget trying to find meaning. I was excited to see Jayne but I was also feeling numb and shaken from reading another story of loss. Talking with Jayne reminded me of how grateful I am for the support she gave us at one of the lowest times in our journey. There aren't words to describe the impact she made on me the first time we spoke. I am forever grateful for her kindness and empathy - it changed our lives.

And it ignited a passion in me about helping other women get the same support and information when they receive a terminal diagnosis. It made such a difference in our situation and I know there are many women who don't have the same opportunity. I don't know what to do with this passion yet, people say that I will be more effective helping other mom's once I have a healthy baby on earth. I trust their judgement but my heart aches knowing that women are receiving fatal diagnoses every day and walk away alone, without information or hope. It doesn't have to be like that! And it doesn't have to cost a ton of money! All Jayne did was talk to me on the phone and everything changed. It can be like that for others. I don't know what it will look like but I'm going to keep "squawking" about it to OB's, genetics counselors and anyone else who will listen in the hope that they will give women the opportunity to name and hold their babies. And the contact info. for someone who has been down this road so they won't feel so alone. They can contact me.

If you relate to this, I would love to hear your story. What support did you receive? What was your experience? I don't know what I'll do with this information, but I want to tap into this passion while it is aflame. If you are willing to share, I would love to read your story.

If you are an OB, Genetics Counselor, L & D nurse or someone who comes in contact with families who find themselves on this journey, please give them this blog address. Please let them know they don't have to walk this road alone. There are so many of us who would like to love and support them in their pain.

The day we got home from the hospital after Chloe was delivered I was talking with a new friend whose journey looked very different from mine. When her Dr. saw there was not heartbeat during her prenatal visit he gave her the address of the family planning clinic that would take care of her. She was in shock and didn't know what to do or what options were available. She followed his advice and is still angry about how he handled it. She was never told she could deliver her baby, hold her baby, find out for sure she was a girl. Take pictures, love on her and share her with family members. She was never given the opportunity.

That pain doesn't just "go away." She is still hurting. My heart aches for her and reminds me what a gift it was that I was given options and information. I want more women to have stories that echo mine, not hers. She is doing wonderful things now to support other women who are hurting - God is using her and her pain. He is bringing beauty from ashes. I believe that with more information people wouldn't have to work through so many ashes.

I'm beginning to get back to life. But it is a new life. It is richer and more meaningful because of my daughter. I'm forever changed. Her legacy is important. I'll keep talking about her, perinatal hospice, support for couples who have experienced a loss and anything else that I hear about that helps. I'm not trying to save the world, but if it makes a difference for one...

Making a Difference

An old man was strolling along a beach one day. In the distance he saw a young boy and girl reach down, pick something up and throw it back into the sea.

Drawing nearer, he saw that the sand was littered with thousands of small stranded sand dollars.
The children were patiently picking them up, one at a time, and returning them to safety below the water.

"What are you doing?" he asked.

"Saving sand dollars," replied the children as they continued about the job at hand.

The old man, somewhat jaded by age, thought the children's actions were futile.

"But the beach is littered with dying sand dollars. What possible difference can you make by doing this?"

The young girl bent over, picked up another, and threw it with all her might. With a plop the sand dollar sank safely below the water. Then, turning to the old man, she said with all the wisdom of a child:

"I made a difference for that one."

This story came to mind yesterday at lunch with Jayne. And it came to mind again while writing this post. As I typed the story, I have to laugh...we live on Sand Dollar Ct.

Saturday, May 24, 2008

Life is Good

It was so strange when those words came out my mouth last night. I was surprised. I was taken off guard. And yet it is true. Life is good. Life is hard - really hard right now. But my life is good.

Laura Bush was in town at a book signing for the new children's book she wrote with her daughter Jenna - Read All About It. It is an adorable book! Jose' and 3 girlfriends came along to meet her and get the book signed. We waited in a long line in the rain - how does that happen in sunny California during Memorial Day weekend?

In full disclosure, I should mention the first 5 minutes weren't so much fun. I arrived early and was in line alone. There was a precious little baby girl directly in front of me and a pregnant woman behind me talking about prenatal vitamins and cesareans. Since I was alone I didn't have an escape - I started to freak out a little. I called my husband three times trying to get through to him. Hearing his voice mail was better than the conversation behind me. I felt trapped and then he finally arrived to save me. It was one of those, "Are you kidding me?" moments. There is a huge line and the only infant and pregnant woman I see are directly in front of and behind me. What luck!?!

Everyone arrived soon and the baby and the pregnant lady no longer had my attention. We talked and laughed as we waited to see Laura. We checked out the cute Secret Service men for my single friend. We shared plans for the weekend, recaps about the day and whatever came to mind. It was totally normal. It was so nice.

We met Laura, had our books signed, Jose' went home to watch the Laker's and Angel's games and the girls went to dinner. We were seated in big cushy chairs, still glowing from seeing the First Lady, Diet Coke was flowing, the food was served and looked amazing, three great girlfriends were with me and then it happened. "Life is good" came out of my mouth. Silence. In my mind I started questioning myself, "Did I really just say that? That didn't just come out of my mouth. How could it? Did I forget the storm I'm still in?"

Then I found the answer, "Life is good." Life is really hard - more frequently than I would like. But my life is really good too. I have dear friends that I enjoy and who love me, support me and laugh with me. Enough money to buy books and dinner. I got to meet the First Lady of the best country in the world. I have a husband who loves me. We have a home, multiple cars, jobs and money in the bank. We're healthy and our family members are relatively healthy. I have a great life. There are things that I could complain about - and I do, trust me. But all in all, I have it pretty good. And unfortunately, I don't always remember the great things I have in my life. The good life coexists with pain.

There are so many blessings, even in the midst of extreme loss and pain. I'm grateful. I'm thankful. I'm full. There will be more times when I feel empty - and it could be 15 minutes from now. But right now, I am full and I am happy. The crazy thing about grief is that I can move from happy to sad in an instant - and without warning. It is part of the process. Last night was a turning point for me. I was OK enjoying "happy." I didn't feel guilty. I enjoyed it. I was present in that moment. I over analyzed it, but that is what I do, and it will require counseling to correct.

I typically want to blog when I'm sad so I wanted to be sure to share this happy experience. In talking with a few people who have read the blog they were under the impression that I hadn't left the house and was in a really dark place. I have very low points in my grief, but they pass. Most of the time I'm doing OK. It seems like I have one really bad day a week but the rest of the time I'm able to run errands, etc. My energy isn't what it used to be, yet. Sometimes I don't have the energy to answer the phone, but that passes too. Grief is a moment to moment experience. And even when I'm at my lowest, I know it is only temporary. I want to remember that. But I also want to enjoy the good times - not focus on the fact that they will pass too. Life is such a balancing act.

Thank you to all my new friends in the blogosphere. You are such an encouragement and comfort. I love to hear that people are visiting the blog and to read the comments and emails. They are such a blessing! When I'm having sad moments that support makes such a difference and means the world to me. You'll never know how much they help.

Many of you have heard the Mercy Me song Bring the Rain. The lyrics remind me that God is bigger than our pain. And it is true that because of the pain I'm able to recognize the joy and appreciate it even more. I wouldn't choose the pain, but I am able to see the beauty in the storm.

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

I just remembered, Mercy Me is performing at the fair in July and we will be there to hear them sing this song. Life is good.

Wednesday, May 21, 2008

1 Month

I feel a little guilty for posting such random thoughts. The posts I like to read are eloquent and uplifting. This one is not.

Monday was one month since Chloe was delivered. I think I had my emotional breakdown on Friday because I was so nervous and anxious in anticipation of Monday. I was a wreck on Friday but since then I have been doing pretty well. Spending time with friends has kept me busy and my mind occupied. It is strange. Most of the time when I'm busy, I don't think about my grief and all my feelings. I almost feel normal. And then I remember that one month isn't much time at all. I think I still move in and out of denial and that is why I am able to function well at times.

We went to church over the weekend and the topic was "The Eye of the Storm." It was so timely. I realized my mind is working overtime in a big way. During the service my mind kept wondering about Chloe. Then I would scold myself, "Why are you thinking about this, pay attention!" Then I remembered, the topic was the storms of life and we are in the midst of one. It was normal and good to connect my feelings and experience with the message. Too frequently I am hard on myself as I try to figure out what stage of grief I'm in, if I'm doing it right, if I'm moving through it and making progress toward healing. I put so much pressure on myself. I want to figure out where I am in the grief cycle so I can determine how far away I am from the end. When I'll feel "whole" again. But it doesn't work that way. I understand that intellectually, and yet my brain keeps playing the same game. Am I "there" yet? Am I done with this pain? Am I "OK" again? It just doesn't work that way, unfortunately. Plus, it has only been a month and grief takes time.

Even though my mind works overtime like that too often, I'm still in a mental fog most of the time. I can't think of the question I was going to ask or the topic we were just discussing. My mind goes completely blank. There are so many feelings and thoughts under the surface, yet it is like my brain is on overload so it just shuts down. I try to write an email and I can't find the words. I want to talk but I don't know what to say. I feel disconnected from myself. It is so strange. I don't like it.

We went to the baseball game on Sunday and there were so many adorable children. I was glad that I didn't feel jealous or angry. Instead, I was longing for one of my own. I thought about how great it will be for us to have a healthy baby to love. I don't think it was a longing for Chloe because I know that she is in a better place. Things would be so different if she hadn't been so sick. Of course I wish things could have been different and that she could be born on Sep. 4 perfect and healthy. But that wasn't an option.

When I have these thoughts, I ask myself again, "am I grieving correctly?" Am I really longing for a future child or am I in denial about Chloe's death? I jump way ahead. Physically I'm not ready to get pregnant, so why do I need to have all these answers right now? I guess I want to control something that is out of my control. Instead of putting pressure on myself, I have to stop and remind myself - people who are trying to avoid grief probably don't ask themselves these questions. I'm over thinking it way too much.

This feels like a bunch of rambling that doesn't make sense. But I needed to get some of this out of my head. It doesn't make any more sense now that I see it in front of me, but at least it isn't rattling around in my brain anymore. Thanks for letting me "dump."

Thursday, May 15, 2008


I’m overwhelmed. I am absolutely overwhelmed. With tears. With grief. With sadness. With love. Because of a blanket my boss sent me. A beautiful, pink, soft blanket that just arrived in the mail. The gift box was so beautiful I took a picture. And the blanket is so soft and comforting that I broke down the minute I touched it. How can a blanket feel so comforting? Because of the love sent with it.

I’m overwhelmed by the emails and cards we have received from friends, family and even strangers. Even when they don’t know what to say, they call and write anyways. They sacrifice their comfort and reach out because they know that as hard as it is for them to do so, that we are hurting even more. And so they email, call and write anyways. And it means so much. To know that people are praying for us, grieving with us and loving us.

I’m overwhelmed by the women I’ve met through blogs and their amazing stories about the children they have loved and lost. The children they care for that are on earth even in the midst of their pain. Their courage and strength is inspiring to me. It gives me hope and guidance for the road that lies ahead. They have walked this road and they have been gracious enough to share their journey. I hope to meet more of these women. Not because I want there to be more that have experienced this loss, but because I know it brings healing to share and connect. And each one of the women I have come across has had extreme faith. And I know that their faith has grown through their journey – even though it was overwhelming. How do women who don’t have faith get through this? I know they are out there. If we feel alone and we have the omnipresent Creator to comfort us, how must those women be feeling? I can’t imagine. It is overwhelming. My heart goes out to them even more in their loss. I pray they will find these blogs as well. And that they will be comforted.

I don’t have energy or motivation to do much these days. When Jose’ asks me about my day I feel like I should get a certificate just because I went to the grocery store. Doesn’t he know how difficult it is for me just to get out of bed, to take a shower, to risk being outside where I might make eye contact with someone and break down for no apparent reason? He does and he doesn’t. He does because he sees me when he walks in the door, still in bed and without a shower. He doesn’t, because he has had to shower and go out into the world to provide for our family. Our family. Just typing the words stings. We are still a family, even though our only child is in Heaven. Right? I know the answer is yes, but I still keep going round and round with those types of questions.

Mother’s Day was so hard. Thankfully, Tues. and Wed. were better. Better of course is relative (refer to the paragraph above regarding a daily shower.) I was able to do a few “normal” things. But the safety of home is still my favorite place to be. I never know what to expect if I go out the door. Will it be like it was last week when I was in Michael’s and a pregnant woman and her daughter were shopping near me and my heart hurt so much I had to go to another area of the store? And then when I was in line they appeared again. Inside I was shouting, “Don’t you know my baby just died? Can you please go away?” Her daughter said, “Mommy can you hold me.” And she replied, “I would love to hold you” as they walked away. You know, I would love to hold my daughter too. But I can’t and it hurts so much to be reminded of that when I’m out trying to do “normal” stuff. And the anger shocks me. Those thoughts aren’t like me and they scare me sometimes. I’m afraid that the day may come when I can’t hold the words in.

I don’t know why I write all that. I don’t know if anyone will read it. I don’t even know if it makes sense. I think it is better to get this stuff out of my head though. It helps me feel less overwhelmed.

As I type this, a neighbor is holding her baby and looking at flowers in my front yard. I could hear her baby making sounds a few minutes ago but I tried to push it out of my mind. Maybe that is what triggered the Michael’s memory. But seeing them reminds me that I can’t hide from other people just because I’m in pain. I’ve never seen this woman before and yet as I’m typing about home being a “safe” place to hide; she walks in front of my view. I think God is reminding me of something that I already know. There is joy in the world even though there is grief. Just because my life feels like it is engulfed in pain doesn’t mean that everyone else’s is or should be. Hiding won’t make my grief any lighter and it is impossible to avoid the grief or the joy. Even in my living room. And why would I want to avoid joy?

It is a beautiful thing that a mother wants to hold her daughter as she shops at Michael’s. And that a baby can enjoy the flowers. And I wouldn’t want that to change just because I can’t do those things with Chloe. Chloe is enjoying more beautiful flowers than we could even imagine. She is in a great place. And I pray the day will come when I will be in Michael’s carrying my second child around as I shop.

Life is filled with joy and pain. I thank God that sometimes He can show me both at the same time. He brought a little baby to look at flowers and at first it made me want to scream! But now, I see the joy and beauty of that moment between a mother and a child. I want lots of those for that little baby. And I want them for myself, in God’s timing.

God is so good. And He certainly does work in mysterious ways. When I started this post, I was able to do it because of the strength I found in the blogs of other mothers who have lost a child. After writing the post, I feel stronger. Strong enough to take a shower.

quick update:

I was able to take a shower. I put the conditioner in my hair first. When I realized what I had done, I laughed. Although I had the strength to get in the shower, I guess my head still wasn't on the same page. To be able to laugh in the midst of heartbreak was another reminder that joy and grief can exist at the same time.

Another realization: I may need to rely on borrowed strength for awhile. When I can't find the strength to do what needs to be done, I need to reach out and borrow some from someone else. I can't do this on my own - even though with my personality and dysfunctions I try to more than I should. I have to rely on strength from God. Strength from His promises. Strength from His children that reach out to offer it to us. Strength from those who have been on this road. Thank you in advance for sharing your strength with me.

Monday, May 12, 2008


Bookends. It's the only word I can think of to describe my Mother’s Day. I knew it would be like that, but it was still difficult. Bookends of grief.

I received my first bookend of grief 23 years ago when my mom died. I was 12 and my brother was 14. I didn’t grieve that loss until decades later. The pain and loss came to the surface in many different and typically inappropriate ways. That became even more evident the year I was planning my wedding and I felt so lonely for my mom. I knew that life transitions bring out unresolved grief; I just didn’t know that I had so much unresolved grief inside. Everything on the surface looked good - a successful career, a home, and I was getting married. Life appeared great – except for that gaping hole inside.

Thankfully, I realized that I had to address my pain because I knew that it would come back again when I got pregnant and I didn’t want to put my child through ‘mommy’s emotional roller coaster’. We made some important and dramatic lifestyle choices that allowed me to focus on healthy grieving. I was able to address the loss through counseling and a Grief Share support group. I had no idea at the time the importance of that decision.

When the anniversary of my mom’s death arrived in March, I shared with someone that I had never felt so at peace about the loss. Not that I was OK with it or would choose it, but that I finally felt like I was at a place of acceptance. Maybe it was the work I had done in the last year in preparation to have a baby or maybe it was because I was pregnant and I felt a new sense of hope related to motherhood. As I look back now, it is so interesting to recall that conversation – I had no idea how important that acceptance would be.

When we found out we were pregnant in December, it was like a dream come true. Finally. We had waited so long to have a baby. When a friend at church found out he said, “If Mother’s Day was today you would qualify.” I kept remembering that conversation yesterday. I still qualify. But it isn’t the way I thought it would be.

My second bookend of grief arrived on March 24 when we found out at 16 weeks that our baby wasn’t expected to live. It was just a week after I had told my friend I was in such a great place emotionally. It all changed in an instant. Anyone who says that words don’t matter has never been told that someone they love is going to die. Words change lives.

“I do."

“You’re pregnant.”

“I don’t hear a heartbeat.”

Words change lives.

Mother’s Day this year had a new dimension that I never imagined. Even with the new found place of acceptance regarding the loss of my mom, I still missed her on Mother’s Day. To no longer have Chloe in my belly made it even harder. I felt so lonely for both of them.

I decided not to go to church. I knew it would be a day of celebration for everyone else and I didn’t feel like celebrating. And I didn’t feel strong enough to put on a happy face and celebrate for them. It was the right decision for me; I am sure that next year I will be in a better place. I “hid” at home all day and read and watched TV. I knew I was escaping and avoiding, but I just couldn’t do anything else. I felt my mind shut down when I thought about my mom or Chloe – it was too much. Too raw. I know it won’t always be like this. But yesterday it was, and that is OK.

Blog Day 2

Once the blog was up, I was so excited. There have been few moments of real joy and happiness in the last few weeks so this was a big deal. We sent out an email to friends and family with the web address - I could hardly sleep that night, I wanted to check to see if anyone posted a comment. Yesterday I checked email and the site several times to see if people had visited. A friend had already shared the site with someone who is experiencing a miscarriage. My heart was full to think that maybe the blog would help someone else who is experiencing this pain.

By the afternoon, after receiving many emails with kind comments about the site, I realized I had unrealistic expectations about the blog. Deep down, I was hoping that if the site helped someone else that all this pain would be worth it and it wouldn't be in vain. Honestly, I don't know if there will ever be a day when I feel that way. The truth is, the pain and loss will always be there, nothing will take that away or diminish our loss. But there is a layer of positive feelings that comes with knowing that maybe our story could help someone else. I was so glad to have this realization, because I might have experienced a lot of let downs if I hadn't recognized that I can and will feel the loss and the hope at the same time.

The pain is enormous. We will always feel a loss in our lives for Chloe. I know it won't always be this intense and it won't be every day, every hour, every minute. As we walk through the grieving process it will get better. I'm thankful to know that is true. The hard part is now. I want to wrap everything up in a pretty pink bow - but life doesn't work like that. Sometimes it is really hard and it doesn't make sense. But hope remains.

Saturday, May 10, 2008

Jose's thoughts

It's been over a month now that our world came tumbling down. I have heard of folks being mad or questioning God for allowing these things to happen. Truly, I say that I am not upset nor do I question my God. I believe that we just live in an imperfect world. And this sort of thing just happens. This by no means takes away my emotional pain that I feel in my heart. My heart longs for the soft loving touch of our baby. I watch little babies with their parents and it brings me joy but also a longing to have that soft touch.

I could never understand why my mom never gave up on me or counted me out. A quick story, it was 1991, I was twenty years old and I had just purchased a Ford Mustang GT 5.0, WOW! I was washing it in the front yard and my mom came out and told me to take care of myself and that she was worried about the lifestyle I was living. She finished by asking me if I loved my new car, and I gladly said YES! My mom finished by telling me she loved me a lot more than I loved that car. Now, I am beginning to understand the love that parents have for their children and if we humans can love our kids that much then how much more can God love us all?

God Bless!

Why We Created the Blog

We created this blog as our memorial to Chloe and as a resource for people who experience a terminal prenatal diagnosis or the loss of a child. In the weeks when we were dealing with the life changing news that our baby was going to die, doctors appointments and a million different emotions in the midst of a haze of numbness, we were just trying to figure out how we were going to get through. We received wonderful support from friends and family and we will always be grateful for the ways that they reached out to us when we were hurting. We still felt very alone though - we had never been through anything like this so we didn't know what to feel or what to do, it was very lonely at times. Then we were given the link to the blog for Audrey Caroline and it was so helpful. There was someone who understood what we were feeling. Reading the posts was like reading our thoughts that we didn't know how to articulate. It was comforting. And the timing of finding the blog was so powerful.

In the last few days of Chloe's life and right after we had to make decisions about having a service, etc. We chose to have her cremated and have her ashes at home. Having a service didn't seem to make sense to me, but we needed to honor her and memorialize her time here on Earth. Since Audrey's blog had been so helpful to us, I wanted to create a website of her story with the hope that it could help someone else some day.

The blog was created in May, after Chloe passed. The postings from March and April were emails sent during the journey to update people and ask for prayer. All of the links are websites I've found helpful and I've read all the books recommended.

Our friend and pastor, Eric, said that even though Chloe only had a short time here on Earth, she has left a legacy. People live their whole lives and hope that they leave a legacy, but this little baby has already touched peoples lives. My heart swelled with pride at the thought of my little girls legacy.

God has a plan for Chloe's life that is just beginning to bloom. Our prayer is that her story and her life and will bring comfort to others who walk the same journey. That parents will know they aren't alone and will have the resources they need to make important decisions while their baby is still with them and comfort, support and encouragement if their baby passes.

If you find yourself on this journey, we are so sorry. We pray for you everyday even though we don't know your name or the name of your baby, we know your pain. And we know that God is good even when life is hard. We know that is true from our experience. You will get through this and you don't have to do it alone. I would love to hear your story.

Tuesday, May 6, 2008

The Whole Story

Our journey began on March 24, 2008 when we received a call that the AFP blood test that screens for potential birth defects came back positive. It was about 4:30 pm on a Monday afternoon and my world stopped when the nurse gave me the info. One of my greatest fears was coming true, but I didn’t realize it completely.

Jose' wasn’t home yet. “Should I call him or tell him in person?” He had gone to a funeral that day for a little baby in our church who was born at 5 months and only lived for a month. I couldn’t believe the timing. My mind started racing, although there were no clear thoughts forming in my mind. All I could feel was fear and panic. I knew I had to call him and tell someone because I felt like I was going to explode. When he answered I could barely speak, the sobbing began as soon as I heard his voice. I asked him to come home as soon as he could and about the nurses call. His tone changed instantly and he came home right away. I called my aunt and a friend who reassured me that there are often false positives with the test and that I probably had nothing to worry about. Deep down, I knew that wasn’t our situation.

The nurse scheduled a Level II ultrasound and genetics counseling for that Wednesday, March 26. On Wednesday morning, Jose' and I were so nervous as the radiologist very seriously took over 100 images of the baby. He was kind and attentive, but couldn’t tell us what he saw on the screen, we had to wait for the doctor. He spent so much time taking images that I knew it couldn’t be good. Once he was done, we had to wait for the doctor to explain what she saw in the ultrasound. Since she was with another patient, the radiologist kept checking in on us to see how we were doing, he looked so sad that again I knew it couldn’t be good.

The Dr. evaluating the ultrasound finally came in and was very serious from the start. She said that there was as a lot of fluid throughout the baby’s body (hydrops) - surrounding the brain, abdomen, behind the neck, lungs, around the heart and in the arms. She explained that in an ultrasound fluid looks black and bone looks white - the intestines looked more like bone than fluid so there was something happening that was blocking the baby’s intestines from operating correctly. They detected cysts in the fluid behind the neck (cystic hygroma) and shorter femurs than normal. At that point she said something to the effect that the pregnancy wasn’t viable. I had to interrupt her to clarify. I didn’t completely understand all that she was saying about how sick our baby was – no one ever imagines they will hear such news. But when she said that the baby wouldn’t make it to term, the air in the room changed.

Our lives changed.

Our futures changed.

My mind couldn’t comprehend what she was saying, “How can this be? The test was supposed to be a false positive. Everything should be fine. No, you’re just supposed to tell us that everything is OK and whether we are having a boy or a girl. What are you saying?” We sat looking at her. Stunned. Silent. She said she was sorry and that we could take as much time as we needed and then go upstairs to talk to the genetics counselor. As she left, she said, “I’m so sorry” again and touched my back and I broke down. Jose’ and I looked at each in shock and disbelief as we hugged each other and cried. We were speechless so our tears spoke for us,“How can this be happening? Why is this happening to us? This can’t be our reality.”

We sat in shock in the waiting room for the genetics counselor. When she called us into her office she was kind and said how sorry she was that we had heard such bad news. She reviewed the AFP test results in detail. We knew the test had shown a higher than normal indication of a problem, but we didn’t know how high until then. Of the four categories tested, all four where out of whack. One was 7 times higher than normal, one 3 times higher and two were half of what they should be. Based on the AFP test results and the ultrasound, all of the factors led them to believe that the baby had severe Down syndrome. It wasn’t the type of Down syndrome that we are accustomed to seeing, it was far more severe and none of the doctors we talked to had seen a baby in that situation survive. She reviewed how chromosomal abnormalities happen and reassured us that based on everything they were seeing, there was nothing that we did to create the situation and nothing we could have done to prevent it.

She encouraged us to do an amnio to get the most information possible to determine the cause of the babies abnormalities. We were so overwhelmed that we couldn’t think straight about how to proceed. The amniotic fluid was low so there was a higher risk of potential complications from attempting the amnio and we were already so shocked from all that we heard we weren’t ready to make such an important decision. We wanted to meet with the OB/GYN to ask more questions before we moved forward with the amnio. An appointment had already been scheduled for that afternoon so we went to lunch and then returned for the appointment.

The OB/GYN said that in most cases they don't see the baby at this state. Typically the mother would come in for a prenatal visit and when they weren't able to detect a heart beat they would look further and determine the baby had these symptoms and passed away. They expected that to happen with our baby, not in 2 days or 2 months, but sometime in the coming weeks. We decided not to do the amnio that day but appreciated the opportunity to talk to the OB/GYN and get another perspective.

That night we needed to know that God cared and that He was present in our circumstances. Intellectually we knew that He was, but we needed some reassurance. At 9:28 pm a 3.1 earthquake hit Newport Beach, CA where we live. We have never heard of an earthquake hitting Newport Beach before. We felt God had sent us the message that He knew exactly what we were going through, that He was with us, and He gave us a reminder of His power.

Psalm 18:5-10 The sorrows of Sheol surrounded me; the snares of death confronted me. In my distress I called upon the Lord, and cried out to my God; He heard my voice from His temple, and my cry came before Him, even to His ears. Then the earth shook and trembled: the foundations of the hills also quaked and were shaken, because He was angry.

On Friday, we met with a perinatalogist, who is a specialist with high risk pregnancies. She did an ultrasound and saw fluid on the front of the baby’s neck and gave us more information about the impact of the fluid in and around the brain. These two factors were new negatives we hadn't heard on Wed. The good news was that there was more amniotic fluid. Based on the increased amniotic fluid we decided to have the amnio. Unfortunately, she tried twice and was not able to get any fluid. I experienced contractions and when the uterus contracted the fluid spread out to the point where she wasn't able to get a sample.

On Sunday, Jose' and I received prayer at church. They prayed for hope, restoration, comfort, peace and restful sleep for both of us and God's will. God has provided all of these. We shared Communion and therefore the baby had communion. They had a picture of Jesus and a precious baby looking at each other and smiling with Jeremiah 1:5 "Before I formed you in the womb I knew you. Before you were born I set you apart." At first when I looked at the picture my heart broke, but now I look at the picture with hope and peace - knowing that God would heal the baby (either on Earth or in heaven). And there is no better place for the baby to be than restored and in the arms of Jesus and Grandma Carmen (my mom) in heaven. When we walked in I looked like a human black cloud, and upon leaving there was a distinct difference in my appearance, my outlook and my level of peace.

On Monday, the OB/GYN was able to get the amniotic sample. She did the ultrasound and then moved quickly to make sure she didn't miss her window of opportunity. We were thankful to have aggressive and skilled doctors. She noticed the baby's heart beat wasn't as strong as it was the prior week and there wasn't as much movement in the arms and legs. She thought that the end was near. We were so relieved that she was able to get the sample, we were doing all that we could considering the circumstances.

On Friday, we had another appointment with the perinatalogist. We were prepared for her to say that there wasn’t a heartbeat or for it to be very faint. We were stunned when she said the baby had a normal heart beat. The fluid surrounding the heart and other areas of the baby was increasing so we knew there were still major problems. She thought that the baby might be able to hold on for another two weeks. Eventually, the fluid around the heart would cause the heart to collapse.

Since all the information we received was telling us the baby wouldn’t make it, we started to discuss our options. There was no danger to me if the baby passed prior to our next ultrasound. The Dr. asked if it was important for us to hold the baby. She thought there would be physical indications of how sick the baby was and that scared me. She said that if we didn't want to hold the baby, a D & E would be easier on me since it only takes about 15 minutes. But if we want to hold the baby we would need to induce and that is more difficult since it can take up to 40 hours since my body wasn't prepared to deliver. Although the D & E might be easier from a physical stand point, for me, I knew the emotional aftermath would be gut wrenching and it was not an option. We would wait until the baby passed and then induce. After talking with other women who have experienced stillbirths, I have found that too many women are not given an option to induce. My heart goes out to them as they grieve the loss of their children and deal with the anger that comes from not having been given a choice. Being able to hold our baby was such a gift.

For the next week we just waited – no appointments. It was awful and such a dark time. A long and lonely week. I felt so helpless and depressed. I had received a referral from a friend about perinatal hospice but I hadn't contacted her. On Friday, another friend sent an email about the concept and I finally contacted Jayne. She guided me through what perinatal hospice is, how they support families who have received a diagnosis like ours, research about what helps in the grieving process and how to make the brief time we had with our baby special. It was a huge turning point for me. That week I had felt like I was waiting for my baby to die and didn’t know what to do with myself. Talking to someone who understood was such a relief. She said, "I'm sorry" at least 10 times throughout our conversation and each time it touched me deeply because I knew she really understood. After talking to Jayne I realized we were only going to have a short time with our child and that I wanted to treasure that time and make it special. Based on that conversation I knew that we needed to name our baby, hold our baby, take pictures and try to get a mold of the little hands and feet. Check out for more information and perinatal hospice locations throughout the US.

That afternoon we attended the funeral of a friends' father. We have had more funerals to attend in the last 3 weeks than we have had in the last 5 years. After talking with Jayne I felt so much stronger and less alone. Because of the comfort she offered me and the comfort we have received from so many loved ones we were able to attend the funeral and offer comfort to our friend, Melissa. As 2 Corinthians 1:3-4 says, Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.

We received the final amnio results via phone on Monday and it was the best news considering our situation. It was a chromosomal fluke as opposed to a genetic defect. There is no reason that we shouldn't be able to have healthy pregnancies in the future. We also found out the baby is a girl. We named her Chloe Faith. We were unsure about finding out the gender of the baby. Many people prayed for us regarding the decision and those prayers were answered. On Wed. night when I couldn't sleep the name Faith came to me as a middle name. Faith is what has seen us through and by faith we know that we will be reunited with our daughter in Heaven one day. I wondered about the first name and out of the blue came Chloe. Then as I started to think of boy names the thought hit me, 'you don't need boy names'. And from that moment I've known we are having a little girl and her name is Chloe Faith. God certainly answered our prayers, gave us peace about the decision and gave us the name. We didn’t know what Chloe meant when we named her but looked it up and found it means “blooming.” Faith “…denotes unquestioning belief and complete trust in God.” Blooming Faith. How perfect.

On Tuesday, I read some of my favorite children’s books to Chloe. It is something I looked forward to doing with her once she was born. I pulled out a few titles that I had purchased over the years and had given to my goddaughters. I told Chloe about the my precious goddaughters Emily, Kelsie and Annie. We had been together a few weeks prior at their Grandmothers house. Who could have known that would be their only time together.

Then I picked up a book I had read once and hadn't thought about for several years. The Trellis and the Seed by Jan Karon. She is one of my favorite authors. My goddaughters mother and my dear friend, Cindy, turned me onto Jan Karon and her Mitford Series of books. I picked up The Trellis and the Seed not really remembering what it was about. As the story talked about flowers and blossoms I saw so many connections to Chloe. We had just looked up the meaning of her name a few hours prior. I figured I was a little emotional and that everything would make me think of Chloe. When I read the line, God's timing for you is different, I broke down sobbing. What a blessing that God would use this little book to speak to my breaking heart. It was another reminder that we are not alone. That He knows what is happening. That He has a plan. That Chloe is in His hands and so are her parents. His timing is different than we would have planned, but that is why He is God, and we are not. His ways are perfect, even when they don't make sense to us.

Jayne, my friend from perinatal hospice, sent us a link to a website about a family who experienced a similar loss It was perfect timing. The first page of the site had a letter from the mom to her baby girl who passed away 2 ½ hours after birth. Jose’ and I read the letter and wept. It was so beautiful and it prompted Jose’ to write a letter to Chloe that night and read it to her. God's timing is so perfect.

Jose’s beautiful letter to Chloe:

My baby girl, how I love you. How I dreamt of holding you and watching you grow up. I will miss the opportunity to chase little boys off when they come over trying to sneak a kiss from my baby girl. I will miss watching you ask your mom to comb your hair. How I will miss showing you how to pray. If and when you leave us here on earth, your Grandma Carmen will be waiting for you to introduce you to all the Saints. You will then be skipping and running on the streets made of gold. Do not worry because Jesus and Grandma will be there to pick you up when you fall. You have brought a new meaning to my life. For instance, I would be so angry or frustrated with some person or something, but you have brought perspective to what it means to hold on to life. You have shown me how to love your mommy more and more every day. Thank you my baby girl for showing me how big and loving God really is. I love you and cannot wait to see you once again in Heaven.

Your Daddy

The next day, April 16, we had another ultrasound to check Chloe’s heart beat. We knew our time with Chloe was short so we decided to make the morning special. We went to one of Jose’s favorite restaurants for breakfast, then walked on the beach and took pictures of my belly with a pink ribbon around it and our feet in the water to mark Chloe’s first time in the water. It was such a special memory.

That afternoon at the ultrasound, the OB/GYN didn’t see a heart beat in our little Chloe. She was in fact restored in the arms of Jesus and her Grandma Carmen. She was whole, healthy and able to dance around the way that all little girls should. We were happy for her, but sad for us. We treasured the short time we had with her, but of course wish things could have been different. It was hard to comprehend that she was gone so soon.

On Friday, April 18 the OB/GYN inserted a laminaria in my cervix to help speed up the induction. I checked into the hospital Saturday morning around 11:00 am. Chloe Faith arrived Sat. night at 9:40 pm. We had an excellent doctor and wonderful nurses who were kind, compassionate and skilled throughout our stay at the hospital. Chloe was 7.6 ounces and she was 17 cm long. They were able to get precious little feet prints for us to take home.

Jose' and my Dad were there when she was born. Jose's mom, sisters, and my brother and sister-in-law came back to the hospital as soon as they heard she was born. Everyone got to spend special time with Chloe, and Jose’ and I had private time with her to hold her and say goodbye. Jose’ stayed at the hospital all night with me - he was so amazing!!!

It has become clear that Chloe's life was intended for much more than her physical body. Her purpose was far greater. Her name says it all, "Blooming Faith." God has been with us each step of the way and He has provided blessings, protection and peace during unfathomable circumstances. And we pray that faith (“unquestioning belief and complete trust in God”) will bloom in all who hear her story. Chloe is alive, whole and restored in Heaven - things can't bloom unless they have life. We are so comforted to know that she is in the best possible place and that we will see her again.

We are so thankful for God and our family and friends who supported us through the hardest 4 weeks of our lives. Their prayers meant more than they will ever know. We can’t imagine how anyone could get through something like this without support and the peace that passes all understanding – and yet we know that many try. Our prayers are with you if you find yourself on this journey of grief and loss. Hold on, you will make it through the pain.

On October 2, 2009 we gave birth to Chloe's little sister, Sophia Carmen. She is a healthy, beautiful and sweet tempered baby. We are so grateful for her, her health and the precious gift of being her parents. We will always remember Chloe and have a special place in our hearts for children with Down Syndrome. There were certainly times during my pregnancy with Sophia that I experienced fear, but God was faithful to His promise.
At times, we still think of what could have been, but we know that God had a different plan. If Chloe had survived, we wouldn't have Sophia. We trust God's plan for our family and are grateful for each member. We know that we treasure Sophia more because of Chloe.

We don’t understand why the loss of child happens, but we know that our precious little baby is in heaven and she will never experience pain or discomfort again. It doesn’t lessen our pain, but it does give us hope for the future knowing we can be there with her some day. We pray that if you find yourself on this journey, that you will not walk this road alone. Reach out to us, the perinatal hospice in your area, or someone who has experienced a similar loss. It will comfort you and give you the strength to continue. You will get through this and there is joy and hope on the other side of your mourning.