Thursday, April 30, 2009

Quilt Therapy







Today was a pretty fun day. I have decided to make a quilt square to memorialize Emma on a Memorial Quilt at the hospital where she was born. Sherri (midwife) suggested that I meet someone she knew who quilts. So, today I had the chance to meet DJ, a retired Army nurse. DJ gave me my first quilting lesson, which was incredibly fun. I have to say, my quilt square is made with a lot more love than talent, but DJ did a great job at teaching me the basics. I was able to complete two full squares today. One square I will send to the Memorial Quilt. The other square I will keep for Emma's memory box. Next week I am scheduled to meet up with DJ so she can show me how to "finish" the square and make it into a small blanket or wall-hanging. I am really looking forward to another fun afternoon with my new friend. :)






While I was at DJ's house, we were visited by "Old Blue." I looked out the window and could not believe my eyes when I saw a beautiful peacock standing up on the porch...yes, in KANSAS. Old Blue stayed there all afternoon and made sounds. At most times it sounded like he was just laughing at me while I tried to figure out how to sew in a straight line (no drinking involved, I promise).






The big news on the homefront is that Tim will be taking command of a company next week! This was a little sooner than we had expected, but Tim is thrilled to have the opportunity. That being said, on short notice he has had a lot to do to prepare for command. This week has been fairly full for him each day, often requiring work to be done when he returns home from work. Tim takes command next Wednesday at 1300. I am so excited for him as he takes on this new responsibility. It is a rewarding experience that I look forward to getting back to in the upcoming weeks. By then we will DEFINITELY have a busy household of two commanders. I plan to enjoy the few moments of taking time to quilt, play with Timmy and work on my little "projects" while I have the chance.

Tuesday, April 28, 2009

Moving Forward

My new "do"
Slightly frazzled hair after a 5-mile run

A
A morning at home. We really enjoyed some "downtime"

I am probably biased, but isn't he the cutest baby ever?




Timmy after the spaghetti-o slinging event

I am about 2.5 weeks into my convalescent leave (a very generous interpretation of maternity leave). I have really enjoyed and appreciated the opportunity to take a few weeks away from command and spend some time "slowing down." I think it is important in life to seize an opportunity every now and then to enjoy life as it is. We have definitely experienced some challenges lately, but they have resulted in this rare opportunity to cut my self some slack and slow down for a while. For that I am grateful. Just this afternoon I had the opportunity to rock Timmy to sleep for an afternoon nap. I consider this a privilege...I never get to do it! This evening, I sat in the rocking chair with Timmy and slowly read him a long book before tucking him in. Before we stopped to cuddle, I remember thinking "I am so lucky." Not lucky because of the unfortunate events that surrounded Emma's short life, but lucky to have the opportunity to be a Mom to a healthy baby boy. The blessings of my marriage and our love for our healthy son have been lost on me for the past few weeks as we have grieved for Emma. But today, I took a few minutes to sow down and reflect on the blessings in my life. It was an awesome experience that I may not have had if I had not avoided the temptation to jump right back into work and bury myself in something other than grieving.
I am slowly getting accustomed to the "new normal" that has overtaken my life. I feel like my life has fundamentally changed since my pregnancy with Emma. I am hoping that I can draw a positive change from my experience with her. That being said, I felt like I could not move forward without changing my exterior appearance. I felt like I had fundamentally changed on the inside and needed my exterior appearance to reflect that change. I decided to go to the salon and reinvent my look. I have included a few pictures of my new haircut. I am really happy with it and glad to have something with a little more body. The pictures were taken after I ran more than five miles. My hair survived...I was so excited.
I have been making steady progress on a number of projects. Each day, I have decided to devote a significant portion of the day to spending quality time with Timmy. However, I have also resolved to take a few hours each day to work on grieving projects. I have written a full proposal and charter for a pregnancy and infant loss support group at our hospital. I have gotten some buy-in and support from several people at our hospital, so I am hoping to have the support group running in a few weeks. I have taken pictures and learned more about editing. I have designed a quilt square for Emma on a memorial quilt. I am going to receive lessons on quilting from a retired Army nurse on Thursday. I have written about half a book that I intend to publish. I have also collected items for a scrapbook that I will make especially for Emma. I have participated in raising money for the March of Dimes through the March for Babies in Topeka. I have gained a great deal of peace from these projects and look forward to more "grieving with a purpose." When I have completed these projects, I will return to work and start the process of "moving on." In some ways I dread returning to work because I know that it will entail another step in letting Emma go. For the time being, I have my projects to help me hold on to her memory. Eventually, these projects will come to completion and I will step back into my normal life. But I have changed.
From a physical perspective, I am thrilled to be working out again. I have been running for almost two weeks now. I have started building my "5-mile base" for running, meaning that my baseline for running will be five miles. I have run easy 5-milers for the past several workouts, and today I moved on to 5 miles of interval training. I am a little smoked, but I am glad to feel good enough to enjoy a good hard run again. There are a lot of ways that my situation could have ended with respect to my health. I count my blessings every day that I ended up on this side of the pregnancy with a healthy future (particularly one that involves running again). I have a LONG way to go to reclaim my fitness, but I feel like I have returned with an emotional intensity towards training that will help me achieve new goals. Running has given me a great chance to rebalance my life and clear my head each day. I have another reason to be happy and celebrate.



Saturday, April 25, 2009

The Five Tulips


Yes...I wrote the poem and took the picture above. The tulips are actually growing in our front yard. :)

The Five Tulips

We love you, dear Emma
And wish there could be
A family of four
And not just of three

But sometimes His garden
Though lovingly sown
Makes buds that don’t grow
And blooms never shown

And I with my grief
And God with “His plan”
Struggle to grasp
What I can’t understand

A life that was wanted
But taken too soon
To grace Heaven’s garden
Shortly to bloom

This spring that you left
And never before
Five tulip flowers
Appeared at our door

Four blooms stand high
A bud underneath
A message from God?
A sign just for me?

Will this be our family,
And future to come?
With four open hearts
To love the bud of one

Thank you all who have donated money to the March for Babies. We earned over $500 total in about a week, and I have also received some additional donations since the March. We attended the March for Babies in Topeka yesterday. Tim, Corey and I participated in the march and had a great time. There were well over 1,000 people there and turned out to be a great family event. Tim and I thought we were clever in having T-shirts made to commemorate our cause. They said "Like a bridge over troubled water...I will lay me down. In loving memory of Emma Grace Decker, April 9, 2009." I was surprised to see just how many other people were there with their own T-shirts, their own lost babies and their own personal tragedies. It was sad but also touching to see how many families had been affected by the loss of an infant or pregnancy and how many of them took up the cause of raising money for the March of Dimes. Because I am a huge nerd, I read a book several months ago about the polio virus, development of the vaccine and the inception of the March of Dimes. When the original March of Dimes campaign began, they achieved overwhelming success in getting lots and lots of people to contribute small amounts of money. The organizers were wildly successful in achieving their goals, and ultimately saved countless generations of American children from the tragedy of polio. The current March of Dimes campaign is still very successful. The march that I participated in was inspiring and fun.

Wednesday, April 22, 2009

Smashing Melons

Corey-"No one was harmed in this event"
"Great throw, Dad!"

Mom actually threw a tomato at Tim. Here is her reaction.


Maybe we should have done a risk assessment...

Wow, Tim!

Opening a cantelope with a hammer is actually harder than it looks.

Seriously, no one got hurt

Kim Decker, in the driveway, with the...screwdriver??

We're sane, completely sane...


Thanks to all who have contributed to the March of Dimes on behalf of our team. We are thrilled to announce that we have exceeded our goal!

Today was Tim's last day of "paternity leave" (loose definition, but we''l take it). We commemorated the occasion by taking Timmy to the zoo. We had an absolutely beautiful day and thoroughly enjoyed some family time.
In case you are wondering about the pictures, please read below. It is pretty long, but hopefully conveys our message. Our huge thanks to Corey, Kelly, Ryan and Nancy:

When Tim and I returned home from our deployment, we kissed the ground for two reasons. For one, we had just returned safely from a year in a combat zone. Some of our friends were not so lucky. The second reason we were excited to be home was that we thought we had completed the interminable series of lectures about Post Traumatic Stress Disorder, rage and healthy readjustment. We were sick and tired of the endless litanies reminding us not to hit our spouse, not to spank the kids and not to kick the dog. Unbeknownst to us at the time, we underestimated the Army’s resolve to curb rage, PTSD and domestic abuse. We eventually became the lecturers who would discuss these issues with our Soldiers.

At the time, we just laughed off all of these lectures and went about the business of celebrating our return. It was not until a few years later when we have looked back on some of our experiences that we realize just how much rage has played a role in our lives. I will preface this entire discussion by noting that we have ALWAYS lived in a very peaceful house that is completely free of violence. We have a very strong marriage and have never felt any inclination to domestic violence. Perhaps we are a little arrogant, but we consider ourselves educated, creative, introspective and expressive enough to deal with anger without violence. However, we definitely have had to deal with anger after our experiences.

When we returned home from deployment, a very nice family had moved in across the street. The family was comprised of a very loving, religious and gentle couple with a little girl. The lady would eventually become our son’s first babysitter, whom I trusted deeply for her compassion, gentle nature and talent with children. About the time that we moved back into our house, a few events happened:

We bought a new weed whacker, and Tim had made it his business to rid our yard of a year’s worth of unsightly weeds. The trouble was, we had an “economy” weed whacker with an industrial strength weed problem. Tim only vaguely recalls the actual incident in question, but at some point the weed whacker got thrown across the yard, picked up, stomped on and thrown across the yard again. A few weeks later, we met our neighbors across the street. When Tim introduced himself to the lady, she said “oh, you’re the one…with the…weed whacker. I saw you from across the street. So nice to meet you…” A little later on, Tim met her husband, who INDEPENDENTLY also mentioned the weed whacker incident. Apparently the spectacle not only got the attention of the neighbors, but it probably generated some interesting dinnertime discussion. We were a little embarrassed.

Another incident occurred a little later in the summer after we returned. We had just purchased a brand-new boat (because there “was a sale”) and were extremely proud of our new toy. Before we had arranged for boat storage, we had to keep the boat beside our house, which required some maneuvering (of which Tim was an expert). One day, Tim decided to take the boat out for some reason that escapes me now. When I returned home from work, I noticed that the boat was gone…and so was the mailbox. I probably would not have noticed the missing mailbox, except for the splinters that lay strewn all over the yard. My mind could only conjure up what had probably taken place in order to have the boat missing and the mailbox in shards. I imagined the amount of force Tim must have hit the boat with in order to destroy a mailbox. I immediately called Tim up and braced myself for the worst. Tim was still “a little hot” at this point, but told me that the boat had only sustained a scratch, though it extended along the entire side of the boat and had shredded some of the graphics on the side. I did not ask any more about the mailbox.

Later on that night, Tim and I went shopping for a new mailbox and I gathered the courage to ask about what had happened to the old mailbox. Tim coolly explained that he had only slightly dented the mailbox while moving the boat, but when he had seen the damage to the side of his brand new boat, he went for the baseball bat. The mailbox was in shards after he had beaten the whole thing (to include the post) with a baseball bat. Imagine what the neighbors thought about that one.

Tim is not the only one that had to deal with a little anger. Fast forward a few years when I was pregnant with Emma. A few weeks before she was born, we knew that she was not going to make it and I was filled with anger. One day, when I returned home from ten hours on the job, I found the house smelled horrible. I went upstairs to find that our dog, Chance, had experienced a full day of being sick in every way imaginable. The evidence of the illness was in every square inch of my kitchen, but the dog was thankfully clean. In the course of figuring out how to keep Timmy out of the mess and how to move the dog out of the kitchen without furthering the disaster, Chance excitedly took a huge slip ‘n slide ride through the kitchen. Everything was a mess, to include our 130-lb sick dog. I was pregnant (probably about 20 weeks) and had difficulty moving the dog, and Timmy was curious. I managed to get Chance outside and somewhat clean. Tim was not home from work yet, and I did not have anyone to watch Timmy while I rushed the dog to the vet. I was tired, irritated at the mess, and very frustrated by the events at the end of a long day. To make matters worse, as I was loading Chance into the back of the Volvo, he jumped up and put a huge set of scratches all over the back tailgate. I lost my mind. I think I taught Timmy an entirely new vocabulary of inappropriate words. When my tantrum was finished, I sheepishly looked around the neighborhood to make sure no one saw me. Thankfully, everyone was gone and I was “off the hook” for another embarrassing conversation with the neighbors about anger. I quietly packed up the rest of my things, breathed a deep breath and calmly (seriously, I had calmed down) drove to the vet. (Several hundred dollars and a million tests later, Chance recovered).

I say all of this to make the point that even though we have experiences to laugh at, anger has definitely been a part of our lives. Throwing weed whackers, batting mailboxes and throwing tantrums in the driveway are not the most constructive methods of communicating anger, but we have always avoided violence to each other (and our dog). This has definitely come into play lately as we have navigated the enraging waters of our grief and sense of being out of control with our pregnancy with Emma. Not only were we sad, angry, frustrated, confused and scared, but I also had a major surge of hormones that was significantly higher than the levels experienced in any healthy pregnancy (about eight times as much). I needed a channel for my anger and I knew it.

The hardest part of our ordeal was coping with the fact that the best and brightest doctors that Kansas and the Army had to offer were still not completely sure of a definitive diagnosis of what was causing my ailing health. Everyone agreed and confirmed that our baby Emma was sick and would not survive through the pregnancy. In the last week of my pregnancy, my hormones were completely off kilter and I was feeling absolutely terrible. We consulted with a number of specialists and doctors, and there was little agreement among them on what health risks existed for me. We all knew that a number of things were going wrong, but could not quite predict the future and offer a prognosis for my health that was as definitive as the prognosis for Emma. The answers we got ranged from “you’ll be fine” to “you have an immediate threat to your life.” We were scared.

At one point, we made a trip to a specialist that was two hours away. To ease the boredom and anxiety, I called a good friend of mine, Nancy, to chat. I trusted Nancy’s logical judgment and knew she would know what to do and say to make me feel better. She had experienced a lot of the same uncertainty and difficulty when her husband, Ryan, was recovering from a serious injury at Walter Reed a few years ago. I explained the latest circumstances to Nancy and told her how angry I had become. I wasn’t angry at any particular person. I recognized that all of the doctors involved were offering their best medical opinions based on their individual medical training and unique experience. I fully recognized and verbalized the fact that the doctors were probably the recipients of a LOT of displaced anger from a LOT of patients who were hearing unhappy news on a daily basis. On many levels, I really pitied the doctors, who were committed to patient care and compassion at an enormous personal emotional expense. I imagined theirs as a very thankless job that required very uniquely patient individuals.

Regardless, I was still angry. I told Nancy that I was full of rage and joked that I really just wanted to break someone’s kneecaps with a crowbar. I didn’t have anyone in mind, and I have never, ever felt a genuine desire to hurt another human being (no matter what). My wise friend told me that she had experienced the same anger at Walter Reed. She was always so poised and appreciative of the care that Ryan received, but she admitted that sometimes she “just wanted to break something.” I could not have agreed more. We agreed that it would be therapeutic to just see something smash into bits. She said that she truly felt what Walter Reed was missing was a “break stuff room.” I could not have agreed more. Nancy suggested that I go to the grocery store and buy a watermelon to smash. I joked that I didn’t think it would be a good idea…I wasn’t completely sure that I could make it out of the parking lot of the grocery store without breaking the watermelon. After all, what could possibly be more sane than smashing a watermelon with a crowbar in the parking lot of the local supermarket? “Nothing to see here…move along.” “SECURITY!!!”

I really appreciated my conversation with Nancy. I was calmer after talking to her, and if nothing else, she made me laugh with our big plans for “smashing melons.” I could always count on her for good advice and a few laughs.

Fast forward several days after the conversation with Nancy. It was the night before I entered the hospital. I was feeling tired from the emotional energy I had expended on grieving for Emma and preparing for her birth, not to mention the physical toll that the pregnancy was taking on my body. My parents flew in from Virginia to help care for Timmy and to take care of the house. We were also supplying a guest bedroom for our two friends Corey and Kelly, who recently came back from Korea and were in search of a new home in the area. Corey and Kelly came home at about 10pm that night. We were all still up, avoiding the sleep we all knew we needed. Corey came in and said “I need about ten minutes, but we have a gift for you…” Knowing Corey and Kelly, I knew I could really be in store for just about anything. They are really fun people, but I just wasn’t in the mood for fun.

True to his promise, Corey came in a few minutes later and announced that they were “ready,” but I needed to change into old clothes. I asked if I had consumed enough alcohol for whatever lay in store and also wanted to know if anyone was going to throw tomatoes at me. He replied “no, you’re fine. Just trust me on this one…”

So, I walked outside and immediately started laughing. There, on the ground, lay every implement of destruction known to man. There was a giant tarp with a hatchet, a hammer, a giant mallet, a lighter, a screwdriver, a chainsaw and even a shotgun. And carefully laid out beside them were a half a dozen melons and tomatoes. They had put up a ladder and placed on sign on it that read “mean doctors” (Seriously, I harbored no resentment for my providers at all, but the sign seemed fitting anyway). The tarp contained a sign that read “The Great International Stress Relief Smash-Off…Love, Ryan, Nancy, Corey and Kelly.” I immediately started laughing and prepared to politely decline this exercise in the absurd. After all, it was 10pm at night and I was sure that this would just add another layer of lunacy that our neighbors had probably come to expect from us by now. But, there stood everyone, camera poised, cheering and waiting on me to take my first whack. I was little apprehensive because actually smashing a melon seemed so…violent. But, I was deeply touched by this fun little project of absurdity from a great group of friends, so I decided to take a whack. And another…and another. (As a safety note, I will point out that we removed the shotgun and the chainsaw from the equation. They were more for the initial “effect” and did not actually get used.) When I had thoroughly smashed the first melons, I hungrily moved on to another one. When that one was completed, I began throwing tomatoes. Unfortunately, I have zero aim, so I missed the target completely and lobbed the veggie into the neighbor’s yard (oops!) Tim took over and joined the fun. He was able to smash a melon with a rubber mallet, which I will admit takes a lot more strength than you would think. It took a lot of effort for me to get a melon smashed with a hammer, much less a rubber mallet.

We spent a long time out there that night “relieving stress.” It seemed like something that was straight out of the Patch Adams movie...except it was real. This act of kindness that our friends gave to us was a great opportunity to have a lot of fun and to share some serious laughs together (at 10pm at night…in plain view of the neighbors, who happened to drive by). We have always had a deep respect for our friends, but never have we felt quite as much love and appreciation for their friendship as we felt that night. Their gift was “just right, just in time.” We could not have been more grateful. I do not know just how many nurses and doctors I graced with the story of Corey, Kelly, Ryan and Nancy and smashing melons over my days in the hospital. I will say that the number was high…I was touched by their kindness and creativity and loved to tell the story. I am also sure that when I said “I need a melon…NOW” during my labor, my nurse probably did not find this to be an odd request. She probably knew exactly what I meant from my recounts of the night with the melons.

I have since moved on from the anger and rage that spurred the melon smashing event. I got over the anger that night by smashing melons and using Nancy’s creative outlet for my pent up anger. I also got over the anger by feeling an overwhelming sense of love and friendship from the organizers of the melon-smashing, all of whom we love dearly. Since Emma’s death, the anger that I felt has been replaced by the overwhelming emotion of profound sadness and the business of grief. As part of that “business of grief” I have resolved to begin several projects. I have started working on creating an informal support group at our local hospital. I have started writing a book. I have designed a patch for Emma on a memory quilt that honors infants who have died. I have started fundraising to participate in the March of Dimes. I have also resolved to run my first (and probably only) marathon in Emma’s honor, possibly with a fundraising component for an appropriate non-profit agency. (This will be in the distant future, when I am in shape enough to safely begin a marathon training regimen). I have planned a funeral and created a memory table in Emma’s honor. I have completed the memory boxes and started a scrapbook. I have six weeks of convalescent leave that I have completely devoted to the business of “constructive grieving.” I have to adjust to a schedule that is more relaxed than anything I have ever experienced, so I am grateful for so many tasks that will help me grieve but also grieve with a purpose. At the end of my six weeks, I must prepare to resume my normal life and “move on.” There was a time for annihilatory melon destruction, but that time has passed. Now is the time for healing and positive action. A few weeks from now will be the time for returning to work and resumption of my “new normal.” But I will never forget the purpose in healing that the melon smashing served and I will never, ever forget the kindness of my friends.

Friday, April 17, 2009

A Sense of Purpose- March for Babies

I have been struggling deeply to figure out a constructive way to grieve for Emma Grace. I have been absolutely consumed by the grief of her loss, and truly wish to spend all day every day actively grieving for her. I have created memory boxes, made plans for a scrapbook and have started working on a quilt piece in her honor (the quilt piece will have to be made "with lots of love" because I do not really have any talent in that department). However, I feel that each of these activities, while creatively constructive towards my personal healing, are more "guilty pleasures" than anything else. There are only so many times you can open a memory box, re-arrange the contents and put it back on the shelf. There is only so long that I can spend large parts of my time writing short pieces that will stay on my computer and not be read. All of these activities are inwardly driven towards my own personal healing, and serve no real greater purpose than to apply an imaginary salve to my very open wound.

I have decided to begin fundraising for the March of Dimes. Tim and I will walk our first event on April 24, 2009 in Topeka, Kansas in honor of Emma Grace. We will likely do several more walks in the future. I have not given myself very much time to prepare and raise funds, and I am not very comfortable in asking for donations. However, if you are so inclined, please consider donating to this charity by clicking on the link below or clicking on the link to the right side of this blog under "favorite links."

I am very excited about the opportunity to participate in this March for Babies, and possibly others in the future. I have gained more inner peace in deciding to undertake this cause than I have gained from any other futile attempts to hold on to a memory of Emma that I never had the opportunity to make. I feel that contributing to fundraising in any way and participating in these walks offers a constructive outlet for my pain and grief. My chain of command has given me the generous opportunity to take extended leave for the purpose of healing-more emotional than physical. As such, I view this unique opportunity as a gift that requires effort on my part. I feel obligated to make healing my full-time job. I also feel compelled to use this time that I have been given for a greater purpose. I feel that I have found that purpose in deciding to walk for the March for Babies (March of Dimes). Emma's situation was not really related to prematurity, but the pain of a miscarriage, premature birth, stillbirth or birth defect is REAL, no matter what the circumstances. If I can contribute in any way to supporting doctors and families in eliminating this tragedy as much as possible, I will have served my purpose...and Emma's life and memory will be honored.

My second goal is to organize and facilitate a support group for women who have experienced pregnancy loss or the loss of any infant at any stage. The local area does not have the resources for this type of support. I travelled over an hour to participate in a meeting of this nature last night. Almost every woman I know that has become a mother has also become a bereaved soul from the loss of a pregnancy at some point. I have heard a lot of talk about the need to begin a support group, but it does not seem that much has been done to take positive action toward this goal. I was apprehensive about my first meeting last night (I had envisioned something on the lines of having to recite "Hi. My name is Kim and I am an alcoholic because my baby died last week." "Hi, Kim" "My life sucks because...") The group was not like this at all. It was sadly comforting to know that other women had experienced this type of loss and could snap their fingers and say "I KNOW how you feel!!!!" My wound is fresh, but if I can offer even one bereaved mother the support of an understanding ear, I will have achieved my purpose. I look forward to the opportunity to contribute to bereavement education, advocacy and support. After making the decision to fully devote myself to this task, I have achieved more peace than I have experienced since the day we learned of Emma's illness. The healing starts now.

Tuesday, April 14, 2009

Emma's Beautiful Day and Funeral

Main Post Chapel

Emma's Memorial Table



When she was with us...
(Photo by Ali Mocabee)

To all,

Today was an absolutely beautiful day, despite our grief. We have about 2-3 days per year (it seems) in Kansas where the sun shines and the wind subsides. This NEVER happens in spring, but it happened today. The funeral went on without a hitch and was very meaningful for us. We begin our journey to healing today.

Enclosed are the remarks, prayer and songs that were played at the funeral today (in order as they were presented). This will be a bit long, but the words express our love for Emma and our gratitude for everone's support people who read this blog were unable to make the funeral, so we feel that it is important to put this on the blog.

Remarks by Kim at funeral:

For the past few months, we have travelled a very deep and sorrowful road with our daughter, Emma. I have found it very difficult to put the words together to pray or even have the wisdom and understanding to know exactly what to pray for. However, that all changed on Friday when I knew that I could not put one foot in front of the other and walk out of the hospital without the strength and grace of the Lord. Despite my inability to pray over the last few months, God helped put words into my heart so that I could pray for our daughter, Emma. In the back of the chapel at our memory table, there sits a little cross that reads “For this child I prayed.” I would add the word “FINALLY.” I am glad that God has given me the strength to grieve instead of being angry for what I cannot understand.

I am about to read a prayer that I have attempted to reconstruct from my memory. This is the same prayer that I prayed silently for our Emma as Tim and I said our final “good-bye” to her as we were leaving the hospital.

The song you are about to hear is the same song that I sang to myself when Emma was taken from this Earth and I saw her for the first time on April 9th. For the record, I don’t particularly care for this song, but for some reason I have attached some personal meaning to this song. The words brought me comfort when I needed it the most. I believe that this is a small miracle that God performed for me that day, at a time when I had stopped looking for miracles in my life.
As the song plays after my prayer, please take a few moments to pray for Emma as you feel comfortable.

Prayer (written and said by Kim):

Dear Lord,

We commit to You our dear baby Emma and pray for Your guidance. Please take her by her tiny hand, Lord, and lead her to paradise in Your presence. Though we love her dearly, we are now letting her go and entrusting her to Your loving arms.

We grieve for our tiny angel, the one whose first hello also meant her last good-bye. We mourn as parents for the loss of our chance to cheer at Emma’s first step, to attend her kindergarten graduation, to send her off to college, or celebrate her wedding day. We weep for the special place in our hearts that we reserved just for Emma. We grieve for the special finger paintings that will be missing from our refrigerator and the sunsets that Emma will never experience. Despite this, Lord, please help us in our sorrow to understand that her life in Your presence in Heaven is far more loving, more peaceful, and more content than her life in this world could have ever been.

Lord, we have prayed to You for a different course for Emma; one that would have led us to hold a healthy baby in our arms. We struggle deeply to understand Your grand design for our lives and why You have placed this chapter in it. However, we know that You are a loving God, capable of answering this prayer: Please lead Emma to Heaven with You. She is little, Lord, and still needs a parent to show her the way. We know that You will love her and guide her, the same way that You love us and will guide us through our pain. Please take the tears of grief that we shed for her down here and multiply them into tears of happiness for Emma in Your kingdom.

Lord, we do not understand the tragedy of this experience. We seek Your wisdom, strength and guidance as we face the difficult deed of giving our dear Emma back to You after You shared her with us for but a few brief moments. Please be with us as we grieve, Lord, but most importantly, please be with our precious Emma.

Amen.

Song Played:

When I Get Where I’m Going by Brad Paisley

(Feat. Dolly Parton)

When I get where I'm going
on the far side of the sky.
The first thing that I'm gonna do
Is spread my wings and fly.
I'm gonna land beside a lion,
and run my fingers through his mane.
Or I might find out what it's like
To ride a drop of rain
(Chorus:)
Yeah when I get where I'm going,
there'll be only happy tears.
I will shed the sins and struggles,
I have carried all these years.
And I'll leave my heart wide open,
I will love and have no fear.
Yeah when I get where I'm going,
Don't cry for me down here.
I'm gonna walk with my grandaddy,
and he'll match me step for step,
and I'll tell him how I missed him,
every minute since he left.
Then I'll hug his neck.
(Chorus)
So much pain and so much darkness,
in this world we stumble through.
All these questions, I can't answer,
so much work to do.
But when I get where I'm going,
and I see my Maker's face.
I'll stand forever in the light,
of His amazing grace.
Yeah when I get where I'm going,
Yeah when I get where I'm going,
there'll be only happy tears.
Hallelujah!
I will love and have no fear.
When I get where I'm going.
Yeah when I get where I'm going.

Remarks From Kim:

Thank you all for being here to support us as we honor the short life of Emma and recognize the place she has held in our hearts. Emma left an indelible footprint on our lives because she was our child, even if it was only for a short period of time. She was real to me because I carried her next to me for twenty three weeks, felt her movements, and knew that her heart was beating next to mine. It is not really appropriate in this situation to offer a eulogy for a person who, sadly, did not get to experience life. So, for now, I would like to shift focus a little bit and talk about love.
It is my sincere hope that Emma could feel the love that surrounded her. I am not just talking about the love she received from Tim and me, but the love that we all received from our friends and family that have lifted us up in this time of trial. We have felt love in gestures great and small offered by complete strangers and dear friends and family alike. The love and support that we received edified our resolve and allowed us to love Emma even more. We have been the recipients of loving gestures that have ranged from a prayer offered by a complete stranger to ongoing daily support offered by a very special nurse midwife. We cannot really enumerate and list all of the acts of kindness we have received, so we will not even attempt it. However, from the bottom of our hearts, we thank God for the blessings we have received in the friendship and kindness of our loved ones.

On that note, I wanted to share with you a small lesson that I have learned about love and perspective. About a week and a half ago, Tim and I were driving to Kansas City for yet another medical evaluation from a specialist. I was talking to a dear friend of ours who is no stranger to tragedy and sorrow. I complained to her that I felt like we were surrounded by the overwhelming tragedies of many of our friends lately and implied that we were somehow targeted by ill fate. My friend stopped me, paused a minute, and gave me a new perspective that has changed the way that I view friendship and sadness. You see, I was focusing on how many sad things have happened to us and our close friends lately. It is not that the volume of tragedy is any higher for us or for our friends than it is for the average person. The events that happen in our lives only appear to happen more frequently when our lives are intricately woven into the lives of others and we are deeply involved in providing support and love to one another during hard times. The real truth is that we have been overwhelmingly blessed with the capacity to hold close and intimate relationships with so many people who are dear to us. I have learned through this experience that in our capacity to grieve, we must first have the capacity to love. It is that capacity to love that I would like to focus on as we say good-bye to Emma. She is surrounded in love by not only her parents, but everyone in this room who has supported us in our sorrow.

We thought for several days about the song that we wanted to have performed at Emma’s funeral. Stacey Shepherd, who will perform the song, encouraged us to choose a song that speaks to our heart. We listened to track after track and never could quite decide on a song that contained just the right words to express our grief but also recognize the love and support we have received from our loved ones. When we had finally decided on this song, we felt comforted by our decision, but we were unable to find the performance music anywhere. We doubted our choice because it was not really religious, until we found it in the Christian Book Store—the last place we looked. The song remained a big topic of discussion in our household and will remain a topic for years to come. This morning, my mother-in-law, Jan Decker, came into the house holding the devotion for today, April 14. The devotion discusses how God serves like a bridge over troubled water to help us get through difficult times. We chose this song before reading the devotional today, the day we bury our dear Emma. We can not ignore the fact that this is an obvious sign to us that God is with us during our troubled times. This song is for Emma, but it also expresses our feelings about the friendships and love we have experienced. By the grace of God we have changed our perspective on life and have been touched by not only Emma, but the greater love that surrounds her. The healing starts now.

Remarks by Tim:

Ladies and Gentlemen, Friends, and Family,

I would like to thank you all for coming here today to support our family. Kim captured much of the sentiment I would like to convey, but I have been so touched by everyone’s kindness that I would like to express my gratitude personally.

When Kim and I first decided to hold a funeral for little Emma, we expected to be the only audience, as a funeral for someone who never had a chance to live could seem odd and uncomfortable. Your presence here today speaks volumes about your compassion and care for us. And most importantly, we would like you to know we’ve felt your compassion and care, not just today, but throughout our ordeal. Without exception, every person in this room has asked us what we need and what they could do to help. In a strange sense, I’m sorry that we couldn’t lean on each of you a little more, just to let you know how much we appreciate your support. Words could never convey how grateful we are, but please know your caring hasn’t been taken for granted, and we are truly thankful for all of your generosity.

Thank you and may God bless each of you.

Song:
(Performed at funeral by Stacey Shepherd)

Bridge Over Troubled Water by Simon and Garfunkel

When you’re weary, feeling small,
When tears are in your eyes,
I will dry them all;I’m on your side.
When times get rough
And friends just can’t be found,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

When you’re down and out,
When you’re on the street,
When evening falls so hard
I will comfort you.
I’ll take your part.
When darkness comes
And pain is all around,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

Sail on silvergirl,
Sail on by.
Your time has come to shine.
All your dreams are on their way.
See how they shine.
If you need a friend
I’m sailing right behind.
Like a bridge over troubled water
I will ease your mind.
Like a bridge over troubled water
I will ease your mind.

Sunday, April 12, 2009

A day of Support

We have been blessed with a large influx of family members over the lasy few days who have come to Kansas to support us in saying good-bye to baby Emma. Being surrounded by family has helped us feel the support we need. Preparing for the details of the funeral has helped ground us and provide positive progress and emotional healing.

We do not want anyone to feel under any obligation to send flowers. However, a number of people have asked where flowers should be sent. Flowers can be sent to Penwell Gable Herington Chapel or to our home address in Manhattan. Please e-mail me for the adress if you do not have it.

The funeral announcement: http://www.newcomernet.com/obituaries/obitsearch.asp?selected=4&ObitID=32680&EMSessionID=-1&Source=choice

Friday, April 10, 2009

Long Day "After"

I think that we did everything conceivable to prepare ourselves for the difficult and painful experience of Emma's death. All of this preparation did not truly prepare us for the grief we actually experienced, but it probably helped. However, no one prepared us for the "day after," particularly the first morning of waking up to such an overwhelming sense of loss. It is enough to want to make one never want to go to sleep again.

I have lived 27 years of very rich experiences, but I feel like my entire life has been defined by only two phases: life before Emma's death and life after Emma's death. I hope that time will help heal the acuity of this feeling.

We have moved forward today with one tiny step. We have set a date and time for Emma's funeral. We will honor Emma's very short life on Tuesday at 1400 (2pm) at Fort Riley's Main Post Chapel. Funeral arrangements will be provided by Penwell Gable in Herington, KS.

On a number of occasions, we have been sheepishly asked if we are comfortable with receiving phone calls and other communications. The short answer is "yes, absolutely." We always appreciate support from friends and loved ones, even if it is a couple of words posted on a blog guestbook. However, because we have been blessed with so many dear friends and family members who are providing us with much-needed support, we may not have the oportunity to immediately answer the phone or resond to e-mails. Believe me, we check our voice mails, e-mail accounts, blog site and mailbox on a daily basis. A message of love and support is always welcomed, though we may not b able to immediately respond to let you personally know how much we appreciate your thought. Please temporarily accept our blanket "thank-you" and know that we truly mean it.

Thursday, April 9, 2009

Safely Delivered

We are still here at the hospital. Unfortunately, our sweet baby Emma passed away some time last night. I delivered her this afternoon without any significant problems. It has been a very, very sad day for us as we said goodbye to our precious daughter.

I was cut short from myblog yesterday and was unable to write that the pictures were done by Ali Mocabee this week. Ali was so supportive and generous in giving of her time (with zero notice) to take the last pictures of this pregnancy that we will have. Thanks Ali!

As always, we appreciate your support and continued thoughts and prayers.

Wednesday, April 8, 2009



We do not have many updates to offer at this time. The medication has taken a very long time to begin to work and the process appears to be a very long one.

Waiting comfortably

I am blessed to have some internet access in my hospital room. I am currently in Stormont Vail Hospital in Topeka, KS. Everything seems to be going well so far in terms of my comfort and support. Unfortunately, Emma's heart rate declined significantly overnight and we have identified some more edema that has spread to me. We will likely be here for a few more days.

I am in Stormont Vail, Room 461.

Monday, April 6, 2009

Entering Hospital (again)

The doctors have all conferred and now recommended that I enter the hospital. PLease pray for safety and wisdom as we deal with the road ahead. Thank you for your thoughts and prayers, as always.

Sunday, April 5, 2009

The Darkest Hour

I hate to be melodramatic, but it really does feel like we have reached our darkest hour. The sad part is, I know that here is worse to come.

To put the last few days in a nutshell, I went in to see a specialist on Thursday, who diagnosed a molar pregnancy, which can metastasize to other parts of my body. It is pretty much cancer, though not necessarily malignant. He felt that this was an immediate threat to my health and wanted me to be put in the hospital. Some other doctors looked at the evidence and thought that it was such a long shot that they searched through medical journals all through the night to find an alternate explanation. They then sent me to another specialist in Kansas City for a complete second opinion. That doctor diagnosed a completely different disorder, one that suggests that Emma's condition is spreading to the placenta and therefor affecting my health. We are already seeing the effects of this. The risk with this condition is that it can then spread to me, and basically give me the same symptoms as Emma...pulmonary edema, heart failure, etc.

The bottom line is that the doctors really can't agree on a course of action or treatment. Situations like this are very rare and difficult to predict, even with doctors who specialize. Right now the docs at Fort Riley are collecting all of the medical opinions from several doctors, to include the specialists that I have already seen and other doctors spread all over the country who will be reviewing my charts. Meanwhile, we sit and wait. I think it goes without saying that it is very scary to be in a situation where we rely on the doctors with the medical training to help, but they can't really agree. I can only liken it to drowning in a lake while a huge crowd of people watch, each holding a life jacket, but no one taking action because they can't agree on what to do.

Thanks for all of the words of encouragement and prayers. We are very well supported. My parents jumped on a plane immediately after hearing about the complications and are here to help. I cannot be grateful enough for their generosity. Along with our friends Corey and Kelly, they have cleaned the house, taken care of Timmy and provided some distraction and listening ears for us. They have made it possible for us to maintain the household while we go to appointments, cry, take walks or just stare at the wall in disbelief. We try to look for silver linings each day. For the past few days our stated silver lining has been that we haven't broken anyone's kneecaps. I think today I have come to the more obvious realization that we have the best support network or friends and family that anyone could ever ask for.

Friday, April 3, 2009

Frustration

It's been another very long day. We have had about 8-9 doctors consult on my case and there is a difference in diagnosis/ opinion among them. The bottom line is that I will enter the hsopital when we can figure out a little more about the diagnosis, understand the risks, and find the appropriate hospital with the appropriate doctors with the approrpiate experience to manage the risk. The diagnosis for Turner's Syndrome for Emma is certain among all doctors, but the uncertainty surrounds the additonal diagnosis of the condition that is causing my illness and symptoms.

Very tired....very frustrated...

Thursday, April 2, 2009

Entering the Hospital

I will make this brief: I am going to be entering the hospital.

There have been some concerns with some lab results over the last week. Today I went to the maternal fetal medicine specialist and found out that there is another problem with the pregnancy, this time impacting my health, not just Emma's. This condition is another one of those rare disorders that "just happens" sometimes and is completely unrelated to Emma's genetic problem. The doctor described it to us today as having "been struck by lightning...twice." We did a little bit of research and determined that the odds of having these two unrelated rare conditions at the same time is one in six million. I couldn't believe it...My world doesn't make any sense anymore.

Over the next week we will be consumed with the stay at the hospital, my recovery and making funeral arrangments for Emma. We continue to be very appreciative of thoughts and prayers but may not be able to immediately return phone calls or update the blog. We want to thank you all, our friends and loved ones, for all of the support you have provided to us.

Sincerely,
Tim and Kim