Reading Time

by Sarah

Hands down one of my favorite times of the evening is when Joe gets out his giant Calvin and Hobbes books and reads to Luke.  We all snuggle up,  Joe puts his hand on my belly and reading time begins. It is fun to laugh together and to do this as a family- but most important is the bonding between Joe and Luke that is going on....I'm just a lucky bystander.  I absolutely cherish the way that Joe desires to spend intentional time with his son and am reminded again and again by his actions that I have married an amazing man who is also a fantastic father. Luke is a lucky boy.

 

 

Love Shower

by Sarah

A few weeks ago several of my friends gathered together for a holiday cookie exchange and to encircle Luke and I in prayer.  It was not a baby shower in the traditional sense, but it was a gathering for the purpose of honoring and praying for Luke and I- and it was like nothing I have ever experienced before.  It was a powerful afternoon spent among the company of incredible women who have not only walked beside me during this difficult season, but who have also stood guard around Joe, Luke and I through prayer, encouragement and steadfast support.  They have truly gone to battle on our behalf whether it be helping to keep our spirits up, loving on Luke, praying over us publicly and privately, helping to carry the burden of sharing our heartbreaking news with others in hopes that we would have to repeat ourselves one less time...  Yes, these women have stepped into the gap and have helped to hold us up and continue forward when we have only wanted to lay down.

Sitting in that lovely room on that gloomy afternoon, I was completely humbled by the army of warrior women God has placed around me during this season.  Some have been friends for decades, while others have only entered my life recently- yet all have made an incredible impact on my life.  I am humbled by their ability to step into the fire with me and hold my hand.  They have wiped my tears and listened to my cries.  They have rubbed my belly and talked directly to Luke.  They have not been afraid and have not turned away as human beings are so prone to do when life gets difficult or hard.  They have stepped forward and offered their strength, their arms, their ears, their shoulders, their time, their talents, their energy, their creativity, their homes and their prayers.  And the ultimate humbling fact was that there are so many more women out there who have done these things for me who were not present that afternoon.  God continues to open my eyes to these amazing people in my life and to truly see and appreciate the richness of the blessing that they are to me.  He continues to open my eyes to this wonderful blessing so I am sure not to miss it or forget it as can happen in the midst of crisis.  He continues to show me time and time and time again that I am most certainly and absolutely NOT alone.

Our time of prayer that afternoon was powerful.  God was glorified for the amazing work he continues to do in Luke and how he is using his short, sweet life to touch so many others.  I felt strengthened and loved and encouraged and surrounded and so, so grateful for the rich blessings that continue to flood into my life during this darkest of seasons.

Towards the end of the get together - these wonderful women bombarded me with one final, giant Love Bomb (no other way to adequately describe it!)  They had each brought something for me to open during the month of January after Luke's arrival- a huge basket of TLC! I was completly not expecting this and of course burst into tears when I realized what it held and how much love was wrapped up in there for me.  Some items were wrapped, others were not (I can see comfy PJs, some funny books and DVDs, some recipes....) ...I have not opened a single one yet as I decided to wait and open one each day...starting when I get home from the hospital and after Luke's service...something to look forward to every day when I'm at home resting and recovering.

With Luke's diagnosis, it obviously was not appropriate to have a traditional baby shower per se, but this Love Shower was exactly perfect.  I have never been to one like it before and personally think that every woman should experience something like it in her lifetime (although minus the tragic circumstances of course!)  I was reminded in so many ways of how loved we are and cherished how Luke's life and impact were honored.  We were lifted up in prayer and wrapped up in love.  Sometimes, even amidst the seemingly never ending storms in my life lately, I just cannot help but think that I'm a very lucky girl and my heart cannot help but whisper "Thank you, God."

Dreaming of a White Christmas...

by Sarah

Well, we have made it to this side of Christmas.  Our holiday was a bittersweet one filled with emotion, tears, smiles, and family.  We stayed here in KC under doctor's orders and enjoyed four solid days of R&R together as a little family.  Joe and I had been talking for over a week about how much we would love for Luke to have his one Christmas be a white one.  However, in KC, those are extremely rare...especially when just two days before the temperature was nearing 50!  But God must have had something special in mind for sweet Luke because it didn't just snow...it snowed BIG TIME!  And not just a couple of inches, but a full on Christmas Eve blizzard that continued on into Christmas day- complete with warnings and the works! It was spectacular and wonderfully cozy.  It looked like something out of a movie or what you would see in the mountains, only we were home!  We received over a foot of snow before all was said and done.

Here is how one of our local weathermen described the event:
 Here is what just happened:

• The biggest Christmas Day snow storm in Kansas City's recorded history
• A blizzard on Christmas Day with 40 to 50 mph winds & heavy snow
• The first 6 inch snowstorm in over four years
• A five day precipitation event with rain, thunderstorms, sleet, and snow
• Four straight days of measurable snow

Not to shabby!  Little Luke got his white Christmas in a very special and memorable fashion!  In honor of the big snow, we took some time as a little family to build a snowman in our front yard- Luke's first.  Well, it started out to be a snowman, but as we were creating his head, we noticed that he was developing two lumps so we made him into a snow-cub.  It was a lot of fun to do that together.  He's still standing watch outside the front door.  The snow seemed to make everything more peaceful and beautiful and quiet...maybe even in our hearts a little bit.  Joe had put up lights on our bushes and those looked even prettier under a coating of snowflakes.  It will be sad to take down the lights - they have added a lot of brightness to our home this season.

We attended two Christmas Eve services, one on the 23rd at our church, Heartland, and one on the 24th at Village Church (where my parents attend). Both were beautifully heartbreaking in their specialness to us.  The traditional singing of Silent Night with lit candles took my breath away with its simple, familiar beauty.  Standing there next to Joe in the candlelit sanctuary with one hand touching my belly in effort to hold Luke as close as possible while listening to the beautiful singing of everyone while the blizzard raged just outside the window was too much beauty for my heart to hold.  The tears and sobs choked their way out and I didn't care.  I tried to take a mental picture to forever capture that moment in my heart. I will cherish those few minutes in my heart every time I hear that song or sing it on Christmas Eves in the future....however, I wonder if they will ever be as beautiful to me as that moment in time was.  Even though I have done that literally more than thirty times, this one was different for me.  It was truly beautiful.   This season I have been profoundly aware of all of the music about newborn babe's, mother and child, joy to the world, music about anticipating the birth of a baby, the specialness of being a mother at Christmastime, the emphasis on the birth of Jesus...I have heard the carols of the season with fresh ears this year and my heart has been penetrated in new ways as these oh so familiar songs have taken on new meaning.  Although, I personally have not felt much joy.  This year I have had a much more personal experience of the season and the reason for why we celebrate Christmas...one I pray never leaves my heart....even though I realize that the catalyst for my deeper experience will be leaving my physical body all too soon.

We spent the night at my parent's house and had a great time playing dominoes with mom until the wee hours of Christmas morning. We loved sleeping over - especially when we woke up the next morning and didn't have to drive anywhere in the less than stellar conditions- we could just wander out to the kitchen and get some coffee and look out at the untouched white snow that was everywhere! The tree at mom and dad's was beautiful and our gift giving was a lot of fun.  Luke was a busy shopper this year, so almost everyone received a little something from him which was fun.

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Now the decorations have been packed away, the tree wrestled out the door and Luke's ornaments placed in special boxes awaiting their return next year.  The house seems empty and almost sad without all of the festive lights and special holiday items around....similar to our hearts.  As this season of Christmas winds down, our hearts feel heavy and sadder by the day as our next difficult season rapidly approaches.  One thing I know is that we will look back on this single Christmas we were blessed to share with Luke and remember it warmly. We will ALWAYS be thankful that this particular Christmas was the biggest white Christmas in Kansas City history and perhaps was a little whisper from God for Kansas City's youngest resident?  Maybe.  Only God knows that for sure.  But in my mind and heart, and the way I will always remember this Christmas is that it was all for Luke.  All the beauty and richness and love our hearts could handle...and then some.

Tears, Scripts and Being Normal

by Sarah

It is difficult- these days of my life. I am overflowing with thoughts to be captured, yet when I sit down to write, all that comes out are tears- no words. I find that the tears are barely harbored just below the surface and all it takes is a whisper of a thought, a lyric of a song, a glimpse of a baby, a kind hug, eye contact from a friend who is walking alongside of me during this season, a sweet card in my mailbox...and I'm done.  The tears spill out over the brim of my eyes and they are hard to stop once they get going.  If I am alone, its a relief to release the floodgates and let the tears pour out...exhausting, but a relief just the same.  However, if I am in public or with someone, inevitably the person I'm with begins crying too or there is an apology offered for "making me cry."  I try and explain (through my tears) that this place of sadness and crying is where I live now and where I have been living for the past four months....that they didn't make me cry...I am pretty much crying all the time- especially lately...

I'm positive that I've gotten some second looks as I walk through Target with tears on my cheeks, or as I sit sobbing at a stoplight or in a restaurant, but what I've learned these past few months is that crying in public does not kill you.  It may kill your "impression" you make on strangers, and it may kill your make up application, but really, who cares? I'm learning that there are so many more important things in life than worrying about if your waitress feels uncomfortable offering to refill your water glass as you wipe away some honest tears.

A lot of my time is spent among people who know what is going on with Luke- coworkers, friends, family, church community...and that is a relief to me- to not have to explain what is happening over and over again.  I've been asked numerous times what I say or how I respond when people ask me about the baby and while at first it was difficult to find the words, I've since gotten a pretty good handle on it- at least most of the time.

I typically have two versions of what I say- the first is for people in my life who I will see again and who will notice if I do not have a baby with me, and the second is for folks whom I will never see again or who happened to catch me at a time when I'm not feeling particularly brave.  It typically goes something like this:

Scenario 1
Person I know: OHHHHH! You're pregnant! Congratulations! When is your baby due?  Do you all know what you're having? I'm so happy for you!!! (typically asked in rapid-fire mode)

Me: Yes...we are expecting a baby boy in January and his name is Luke, but there are some pretty serious complications with his health and he is not expected to survive after being born...(que tears, look of horror, shock, panic on their face) but we are keeping him with us as long as we can and trying to savor every day that he's with us...

Person I know: Oh God! I'm so sorry....(usually there is an awkward silence...they typically look away or begin tearing up)...

---then depending on how well I know them, people sometimes ask about what the complications are and how we are doing with the news and it opens up a genuine heartfelt discussion which typically involves tears from both parties and a great conversation.  If I don't really know the person all that well, the conversation pretty much stops at that point because it is just such a difficult revelation to process (I know because I've tried to process it!) People just simply do not know what to say or how to respond because they feel horrible about bringing it up in the first place (which talking about pregnancy is pretty reflexive...at least among women) and their version of the happy pregnancy paradigm has been shattered. 

In my experience, people have later told me that they felt so badly for asking me or for bringing it up at all or for not knowing what to say in response!  And I understand all of that.  I truly do.  The main thing I try and share with people is that it's important for people to know and understand what is going on with Luke because not only does it honor his life but it also honors our time with him.   It also clarifies the future expectation that I will not have a baby to talk about or pictures to share....and I would MUCH rather people know up front than ask me on the other end of the journey....

These conversations are hard, but I'm becoming braver in them.  I'm learning that it is always best to be upfront and honest about what is going on with Luke because you just never know who you are talking with or what their experiences have been.  I am growing to deeply admire people who are not afraid to talk with me about what is going on- as long as they do it in a respectful way (I've had a few very hurtful and difficult run-ins, but thankfully those have been rare).  I have also encouraged those around me to share the news as well if they are asked- not to be gossipy, but more to help me manage the burden of delivering and explaining  this heartbreaking news....and simply because some days I just do not have it in me to share.

The second scenario is the easy one- the one where I'm just the "normal pregnant girl" who is talking about her baby:

Stranger: OH!! You're pregnant! How far along are you? When are you due? Boy or Girl? Can I touch your belly?  Are you excited? Do you have a name? Is this your first? (again with the rapid-fire questions)

Me: (smiling) Yes- We are expecting a baby boy in January....his name is Luke...we are excited and feel very blessed....(and that is typically all I say/allow for in those interactions)

The end.  Blissfully simple. Easy. Normal.

It is so nice in those moments to dip my toe into normal again...there is still a tug on my heart and a deep ache within when this conversation is taking place, but unless they can read minds or notice there is not a sparkle in my eye as I say it, they do not have any idea of my reality and its refreshing to blend in a little bit and feel normal again- if even for a brief moment.

Finishing one Kind of Work to Begin Another...

by Sarah

I had my last official day of work on Monday, December 21st and I got very emotional as the time neared for me to leave the office.  Typically when it is your last day of work before a vacation, you are excited and eager to leave- looking forward to what is ahead.  However, I was not.  I was unsettled, anxious, tearful and emotional...it was the last time that Luke would be at work with me, kicking me as I sat at my desk, causing me to feel out of breath while I talked with kids, filling up the chair I sit in...the last time we would be there together. I cried as I drove away from there....knowing and realizing how vastly different I will be when I return.  I cried because I wasn't leaving for a vacation...I was leaving to begin the saddest and most difficult season of my life...and even though it's time, I'm still not ready.  I cried because the chapter of going to work and having that routine was closing for us.  But mostly I cried because I knew it was time for the REALLY difficult part to begin.

Even though I was feeling all of these things, I was also feeling a tad bit relieved at no longer having to feel "pulled together" or "focused" on professional topics when my heart and mind were truly always elsewhere. I felt relieved to finally feel able to honor my emotions and feelings as they arise during the day without having to bottle them and have them burst forth later in the evening on the drive home or upon arrival back home. I felt relief at being free from an environment where everyone knew what was going on, but only a few spoke or asked about Luke for fear of upsetting me or of not knowing what to say...understandable, but still difficult.  I will miss seeing the faces of the fantastic women on my team who have helped me to stay up on my feet these past few months with their support, love, hugs, encouragement, patience, tears and true friendship.  I would not have survived without their TLC everyday...besides Joe, they were the ones around me the most on a daily basis- and that cannot have been easy..and they took great care of me.

As I prepared to depart, my teammates and coworkers from another team bombarded me with love.  Instead of exchanging gifts with one another, they collected money and purchased gift cards for me for many of my favorite places to help me along my path to recovery.  There were gift cards for home decor places, bookstores, coffee shops, a salon, itunes etc... I was completely overwhelmed by their thoughtfulness and absolute generosity of heart. It is beyond humbling to feel wrapped in so much love and support by the people in your life.  God continues to show me amidst this dark season that no matter how I may be feeling or what I am facing, my cup indeed, runneth over.

So as this chapter of work ends for me in this season of my life, the next form of "work" begins...the work of preparing my mind, spirit, body and heart for what is ahead, the work of creating a restful environment in which to recover, the work of physically having a baby, the work of emotionally and physically saying goodbye to my sweet, adored baby boy, the work of honoring his life both publically and privately, the work of grieving and mourning, the work of recovering physically and the mighty work of healing- heart, spirit and body. 

My head is bowed as I begin this next phase of the journey...Lord, I am praying for a willing, teachable and plyable heart as we enter this season together.

- ..."Whatever you have commanded us we will do, and wherever you send us we will go." 
                                 -Joshua 1:16

Lasts

by Sarah

Since December 4th- one month from Luke's delivery date- arrived, I have felt every semblance of composure slipping away from me...a feeling which has only increased in intensity as the days of December have sped by. With the passing of December 4th, sweet Luke's final month has arrived and along with it, the dawning realization that everything will start to be our 'last' with him.  When I think about this, I sometimes  feel like I cannot breathe.  The arrival of this final month has also kicked into high gear my own mental countdown and attempt at preparation for the dreaded, approaching reality...which is proving to be simply almost too much to bear.

There has been so much that I have wanted to document here on the blog, but I have truly struggled with finding actual words to put to the thousands of tears marking these days that are passing by far too quickly.  It's strange because while they are days I want to always remember, its almost as if my brain will not let me encode them with written language- that they are being written on my heart where no language or words are necessary....but I'm still going to try.

Along with many wonderful experiences, we have also had some challenging "lasts" as well.  In the past few weeks we have had our final sonogram, final OB appointment, finalized our birth plan, finalized Luke's honoration service details, started packing for the hospital, have been crossing off things on our "bucket" list of things we want to be sure to do with Luke while he is here, had my last day of work, had my last blood draw prior to delivery, had our maternity photos taken...a season of "lasts" that just crushes my heart to recognize.  As difficult as this part of the season with Luke has been, the reality that its coming to a close is bringing with it an avalanche of emotion...a recognition that he will soon not be here with us to feel kicking and moving and growing...that he will soon be gone...only alive in our hearts...

How do you hold on tightly to someone you must also let go of?

Even though I know what we are approaching is not the end of our story, it certainly feels that way in these moments and days. I cannot see beyond them.

November, the rest of the story...

by Joe

They say a picture is worth a thousand words.  Well I'll keep the words brief, and show some pictures that go with our posting titled, November.

Our church home, Heartland Community Church, opened in their new home.

 

Luke's first snow in Estes Park.

 

Welcome to Christmas in Bugville, this scene tickles Luke's mom's heart.

 

Touring Rocky Mountain National Park.

Luke left his mark at the Dunraven Inn.

 

The Pioneer Woman came to Kansas City...

 

...and Sarah was there with her friends.

 

Luke's dad learned to not make bacon in the waffle maker.  No matter how good the bacon tastes.  After two hours of clean-up and funny looking waffles, it's simply not worth it.

 

Jozey, came to keep us company for Thanksgiving.

 

Luke's dad was surprised by homemade Harvest Fruit pie on Thanksgiving.

 

 

Luke and his mom and dad got to see the Plaza lights turn on while we enjoyed the warmth of the cider at the InterContinental's Oak Bar.

Luke goes shooting with mom.

Gathering our first real Christmas tree.

 

Our home all cozy ready for Christmas, friends, and snow.

Logistics and Love

by Joe and Sarah

Days are flying by and as we draw closer and closer to Luke's arrival, we are continually overwhelmed by people's loving kindness-es toward our little family.  Based on the consistency of several questions being asked, we wanted to post and share some logistical information that you may be wondering about yourselves.  So please know that we harbor no expectations of any sort- but just wanted to share the following information should you be interested.

Luke will be born via C-section at 9am on January 4, 2010 at Overland Park Regional Hospital.  We will be posting ways you can specifically be praying for us on this day and leading up to this time in a future post.  We are asking that there be no visitors on this day as it will be extremely difficult for us and for our families. 

We have planned a service to honor Luke's life that will be held on January 9, 2010 at 3:30pm.  It will be held at Village Presbyterian Church and is open to anyone who would like to come. 

We have received many, many kind offers to bring us meals in the days and weeks following Luke's birth and passing and are deeply touched by everyone's thoughtfulness and love for us in this area.  Our dear friend Katie has offered to coordinate these meal offers and their delivery for us.   If you are someone who has expressed interest in doing this for us, we ask that you would please contact Katie at: kyeldell@gmail.com so that she can help facilitate this.

Again- we continue to be so deeply and sincerely touched by everyone's outpouring of love for our family during this season.  We have many updates to the blog that will be posted soon as there has been so much happening lately, but we wanted to get some of the logistical questions answered first as they seem to be what we have been asked about the most as of late.  We love you and cherish your prayers and support and we simply thank you will all of our hearts.

Girl Power

by Sarah

I used to be naive.  I used to believe that pregnancy was one of the most lovely and beautiful times in a woman's life- a time where her dreams of finally becoming a mother are within her reach and she is happy all the time.  A time where women cannot help but look beautiful and radient.  A time where everything is exciting and that if you take care of yourself and receive great prenatal care, you will have a happy, healthy baby at the end of a long wait.  While some women are lucky enough to experience pregnancies like that, I'm not that girl any more.  Before we found out about Luke's diagnosis, I had never really considered all that could go wrong with a pregnancy.  I knew of course, that it was possible for there to be some kinds of complications while pregnant, but in my heart I believed that with today's technology and medical services available, that these complications were more inconveniences and could more than likely be remedied. I did know about miscarriages, but actually believed that once you made it out of the "danger" window of that first trimester, you were free to breathe a little bit easier and no longer had to worry about your baby not surviving.

What I know now is a lot more about the heartbreak and dark side of pregnancy than I ever imagined existed. I feel like my innocence and joy of becoming a mother has been taken away from me.  While I will hopefully be blessed enough to have more children, I do not think I will ever feel freely happy until that baby is declared healthy and is placed in my arms.  I no longer look at pregnant women around me and simply think about how beautiful they look to me- I now wonder if their babies are okay, or if they are secretly heartbroken and walking around sad, scared and worried like me. I find myself whispering prayers for pregnant ladies I see everywhere...prayers for their babies, prayers for the mamas...prayers for what I cannot see or do anything to help or fix.  I have learned that being pregnant and becoming a mother is not always as idyllic as it may appear.

As I've been on this difficult path to motherhood, I've been overwhelmed by the amazing women around me who upon learning about Luke, have come up and shared stories of their own pregnancy heartbreaks and losses.  These are stories that no one really talks about or shares publicly...the ones you don't hear discussed or read about in the pregnancy books.  I have been amazed to hear from friends and strangers alike of this secret, sad world of pregnancy that so many women have passed through on their way to motherhood.  Whether it has been situations similar to my own, stories of phantom pregnancies, ectopic pregnancies, miscarriages, loss of an infant due to foreseen complications, SIDS deaths, surprise stillbirths, miracle births, infertility struggles....there have just been so many stories...so many brave women....women who have lent me their shoulders, their stories and their strength to help me along this path.  While I'm so sad to become a member of this secret sorority of sadness, I continue to feel honored to be in such incredible company.  I have also felt immensely comforted in knowing that I am not alone in this journey and that these beautiful women have gone before me and I can see with my own eyes and hear with my ears and heart about how they no longer reside in this dark place where I now find myself...most of them have found joy and happiness again.

What I'm realizing more than I ever knew to be true is that babies are a gift....in any capacity.  Whether they are healthy and running around and driving you crazy, or are just a whispered dream in your heart....they are a gift of hope.  Looking back at the naive girl I used to be- had I been given the choice, I would have probably avoided this harsh initiation into motherhood.  However, standing on this side of the sonogram and diagnosis, I know with absolute certainty that I would NEVER, EVER trade these minutes, days, weeks and months of being Luke's mom. He is my gift of hope....the expanding of my heart- a little bit more every day.  I can truly say I am grateful for this experience and journey with him- it will be forever ours.

I'm also deeply thankful for the beautiful, amazing, strong, encouraging, uplifting, brave, understanding, creative and powerful community of women (moms and non-moms alike) who have surrounded me and shared their stories good and bad with me during this time.  Thank you for sharing, for listening, for crying with me, for loving me, for holding my hand, for letting me fall apart and for letting me run away when its too hard.  I can see your secret angel wings and I'm forever thankful for your strength and beauty.

Welcome to Holland

by Sarah

When we learned of Luke's diagnosis, a friend of my mom's named Alison, reached out to me.  She knew exactly what we were feeling and experiencing because just last October she and her husband had lost their sweet son, James.  She had been told that James had a diagnosis that would prevent him from living very long-if at all-after birth but yet, she and her husband chose to love him and carry him with them as long as they could.

Alison is one of the blessings that has come into my life during this season.  She knows exactly what it feels like, how people respond or choose to back away because they don't know what to say or how to act.  She has had the difficult conversations and has experienced the long hours and days mixed with joy and profound sorrow.  She knows and she gets it.  She shared with me the following and I wanted to share it with you all as it speaks to some of the emotion, beauty and grief we feel each day as we make our way toward our own beautiful Holland.

 Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italilan.  Its all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.  "What do you mean Holland??  I signed up for Italy! I"m supposed to be in Italy.  All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while you catch your breath, you look around...and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.

November

by Sarah

Although there has been much rattling around in our hearts this month, we have also been pretty busy trying to keep up with what has been going on.  Here are a few things that little Luke has joined us in doing:

The opening of our new church home in Olathe, Kansas- (we celebrated with the first Sunday service on November 1 and then celebrated the awesomeness of God's work on November 4th.), enjoyed the extra hour of sleep thanks to the end of Daylight Savings, had a few doctor's appointments, presented with co-worker at the Governor's Conference for the Prevention of Child Abuse held in Topeka, Kansas, shared meals, laughs and tears with many dear friends, traveled to Colorado to celebrate my beautiful cousin's wedding, Luke experienced his first snow storm of the season while in the mountains, rested and relaxed in Estes Park for a few days, attended a fundraiser breakfast benefiting Sunflower House's Circle of Safety, attended a cookbook signing of one of my favorite bloggers, the Pioneer Woman when she came to Kansas City (actually got to meet her and could only say, "thanks for coming to Kansas City"- I know, embarrassing!), hosted a dinner party for great friends with the theme 'breakfast for dinner'- it was AWESOME (potluck, so I'm not complimenting myself or my cooking!), went on several great dates with my husband, baked banana bread, baked a pie from scratch, made several sides for Thanksgiving, puppy sat for a friend's 9 week old puppy over Thanksgiving (the house was very quiet when little Jozey left!), watched the Plaza Lights turn on from the Oak Bar at the Intercontinental Hotel-(a lot of fun, great view, warm room, hot cider in hand and fireworks being shot off right outside the window-absolutely stunning), traveled to my aunt and uncle's farm for an annual family gathering including games, hayrack rides, delicious food, creek exploration, skeet shooting, smores- the works, attended my Beth Moore Bible study each Tuesday night at Heartland-(ever inspiring and encouraging- exactly what was needed), was prayed over by the group at this Bible study (beautiful women lending their strength- cannot thank you enough), Christmas decorations up, scouted out and purchased the most beautiful live Christmas tree and decorated it together as a little family (I seriously think this is the most beautiful our little house has ever looked), put up Christmas lights on the outside of the house, joined a couple's small group with some fantastic couples, celebrated the birth of my dear friend, Amy's new baby boy, Max (difficult for me because of obvious reasons, but very thankful that mom and little guy are both doing great), loved seeing the movie The Blind Side, finished watching all 4 seasons of Prison Break (started in August), shared Thanksgiving with cherished family, had long phone conversations with friends and loved ones who live far away, and of course began Christmas shopping and enjoying Christmas music and movies!

Whew! So much going on and so much yet to come....

Always

by Sarah

In looking forward to November's arrival, I have to admit, I was hoping that things would be getting easier for us emotionally- especially since we had spent so much time and energy working on accomplishing so many difficult things in October.  But what I did not anticipate was the beginning of my own recognition of how profoundly deep this ache truly goes and the glimpses of how long it will be with me- even long after Luke has passed.  This season of having Luke with us has been beautiful and at times joyful, but the longer he is with us, the greater our connection becomes and therefore, the anticipation of his departure becomes agonizing in new and previously unknown ways.

I have been spending a lot of time thinking about him and wondering what he would have grown to be like. What would his cry sound like? What things would make him giggle? What toys would have been his favorites? What color would his eyes have been? Would he like music? Would he enjoy being outside? Would he be a chatterbox or more introspective? What books would have been his favorites? Would he possess artistic talent like his father? Who would have been his favorite friends? What kind of food would he have enjoyed eating the most? Would he have been a good student? An athlete? A science-y kid? Would he have been kind like his father? What would his snuggle have felt like against our necks? Would he be an adventurous eater like his daddy is or more basic and plain-jane like his mom? Will he have any idea of how loved he is and how much we will be missing him? Will he have any clue what we, his family, are like? Who would his favorite teams have been? What would have been his favorite holiday? His favorite season? What kind of hobbies would he have loved? These are only a few things we will never know about our sweet Luke...but things I will always wonder about..always until I am reunited with him in heaven.

I have also been spending a lot of time talking with Luke too. I've been telling him as much as I can about our lives, where we live and our world but most of all about his daddy.  I've told him about the seasons, about the beauty of nature that sits outside our doors and windows as we pass by, about the holidays we celebrate, the friends we love and who love him, about how sometimes the simplest things in life are the sweetest.  I'm desperate to make sure that Luke knows all of the little things about Joe that I adore and what I believe make him so amazing.  I want Luke to know how much his daddy loves him and thinks about him and talks to him and prays for him. I want Luke to know how much Joe cares for our family and takes such good care of us. I want him to know what kind of things his daddy is good at doing, how funny he is, how sweet he is and what a solid, man of God he is.  I tell Luke about the things make Joe laugh, what his hobbies are, what his gifts are, what he is good at doing, about how he always knows the best places in town to share a meal, is always believing the best about everyone, seeks out the lonely, is supernaturally patient with me all the time, how he loves and enjoys tinkering with gadgets and the latest "shiny objects," about how he is not afraid to show or express his heart and emotions, has lots of amazing friends and is cherished by everyone who knows him.  I want Luke to know all of these things and more about his earthly father- and for Luke to somehow be able to soak it all in while he's with us so that he will know the blessing his earthly father is to so many- most of all, to me.

I've told Luke about his parent's love story, about how we met, became friends, then were not friends for a long time and how God worked to move mountains so that we could be together and be a family.  I shared with Luke how much we love him and feel blessed to have him in our lives and how he is rich evidence of our love for each other.  I tell him about how he is bringing Joe and I closer together and how even though our hearts are breaking, our love continues to grow deeper and richer and more real with each day.  I tell him how much we love him and will miss him when he is not with us- and how we will never forget him.  I shared with Luke how I've learned more about and experienced new depths of his daddy's love for me during this harsh season than I may have otherwise experienced had circumstances been different. I've told him again and again how I'm forever grateful to him for helping me to not only see but to realize and accept the blessing of this beautiful love affair that is my marriage.

I know that Luke will be waiting for us in heaven with Jesus and that he will always have the joy of companionship with Jesus that we have to wait a lifetime to experience but still...my heart is breaking...more every day.  In some moments, I'm thankful that our Luke will not have to know any of the pain and heartache that life here in this broken world can bring, but just the same, I still, selfishly wish he could be here with us in our tiny little house so we wouldn't have to wait to know him more.  We would not have to wonder about or miss him every day.  One thing is certain:  we will always love him whether he's in my belly or playing up in heaven. Always.

A bend in the path...

by Sarah

My apologies for the lack of new posts these past few weeks. We are so thankful for your continuing to check in on us even though things have been relatively quiet from over here.  I have had so much rolling around in my head and heart lately but have also been really struggling with just the day in and day out of living in our reality.  Yes, I have been going to work.  Yes, I have been attending scheduled social functions and yes, I have been really trying to not become a recluse- but I think that even though I have been socially visible, in my heart, I have been hiding.  Hiding my true heart from many behind the facade of doing "fine" but also attempting to hide my true heart from God as well. 

I have been wrestling in my head with what is happening with Luke.  Wrestling with my questions of "Why?" and "How come?" and "When will this be over?"  and "What am I supposed to be learning from all of this?" I have wanted to avoid God's answers to those questions- not because I don't believe them, but because I know they are not necessarily what I want to hear or have to face.  His answers are His truth and plan for my life- not mine.  His answers are not the answers I'm looking for- but yet, I know they are the right ones.  All the same, I have been really struggling in my faith these past few weeks. Feeling like it does not matter if you pray or not.  Feeling like God has forgotten us in ways too personal to write about, yet also somehow  recognizing God's presence in the small moments of goodness and beauty that continue to be revealed to us along this path. How is he present in the smallest details if he is not also present in the biggest? I'm working on accepting this truth- breath by breath, moment by moment and hour by hour. I believe that God created Luke exactly the way he is- missing kidneys and bladder and all. Luke is exactly perfect in God's eyes- so how do I learn to wrap my heart and brain around this "perfection" in my own life and what does it all mean?

While I have been struggling with my communication and relationship with God around all of this, I know with more certainty than I care to admit, that God has NOT been struggling with his efforts to develop and grow his relationship with me.  He continues to seek me out, whisper to my heart and provide strength and encouragement where I SWEAR there is none to be had. He has spoken to me through my Bible study I've been doing called "Believing God" by the amazing Beth Moore.  He has continued to provide supportive people, information, assistance and encouragement from sources I had not expected...and the beauty He continues to reveal to me during this season is staggering....and yet, I continue to struggle and stumble.

The reason I'm sharing this is because so many people continue to come up and praise me for the way I'm handling this with such faith and strength-and assume that because they do not see me in total collapse that I must be doing "fine."  When the reality is that I'm doing pretty much anything but "fine."  When I'm alone, my heart is crying out to God feeling absolutely lost, forgotten, scared, worried, anxious, angry, fearful and alone.  My mind, the Bible and my faith tell me I am absolutely not any of those things- that God is with me and loves me dearly and wants what is best for me, but my actual daily reality is that my tears fall all the time and my heart is breaking and actually FEELS these emotions and they feel very REAL!  So I share this with the intention of being authentic in this journey- that just because I have faith that God IS beside me, does not mean that I don't have my panicy moments of feeling abandoned, forgotten and alone in this fog that is my life right now.

So these past few weeks, I have taken a little break from here and have been trying to make a concentrated effort to talk to God more and to worry about how people may think I'm doing less.  My conversations with God have at times come out in squeaks and moans in between the sobs- but at least I'm directing those noises and groans of my heart toward Him- which is an improvement.  I have been working to be real with myself about where I am in relationship to God during this season and recognize that even though my faith in him has not been shaken, my confidence in who I am in Him has taken a beating.

I am learning to believe that God is in the midst of revealing himself to me in an entirely new way and remain certain that He is moving and is here beside us on this mountainside.  I stand on this conclusion because this situation with Luke is just too big and crazy for Him not to be in it- in a million years, I would have NEVER chosen this path to motherhood for myself-so that is how I know that this has to be HIS way for me.  That way, I can take no credit for the good that comes of this heartache or for the yet unseen and unknown beauty that somehow always follows a storm or springs forth following a long winter.

I continue to hang onto the rope on the side of this mountain and am once again praying and laying down my life in obedience for what He has got planned for me...today, tomorrow, next week, next year...It's taking all I've got, but I'm certain I'm not alone in the fight.  God is who He says He is and I am who God says I am.

    -"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD.  "As the heaves are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."
                                                - Isaiah 55: 8-9

It is like lightning.

by Joe

So, we are sitting in a small little room, with this lady, dear sweet lady who reminds me of a school librarian who is wicked smart.  I know she is so smart because she makes it all so simple.  She got up to leave the room, and I turned to Sarah, not to discuss the past 45 minutes of genetic counseling, but to ask 1 question that has been distracting me just a little bit for about the past half hour. 

With the lady out of the room, now was time for my question.  But first, Sarah wanted to know what I thought of the lady.  Yes, I really liked our lady too, I thought she was great.  Now is it a good time for my question?  I asked, "Is that Michelle?"  Sarah replies, "Who?  What are you talking about?"  I ask more specifically, "Is that Michelle, on the brochure?"  She looks, "Oh, yes! It is her. Wild!"  Michelle is a friend of ours whose calming smile on the random brochure in the room where we were was just another sign that eventually, we'll be ok.  God has many friends watching out for us.  In many unique ways, very unique.

The sweet genetic counselor lady was surprised and couldn't believe that we knew her since the company that sends us those brochures is in Arizona.  She simply said as we walked out, "They always pick such beautiful ladies for those pictures, never homely ladies."  I just thought, you are right about that one.  But then again, you are going to be hard pressed to find a soon-to-be-mom without that glow and natural beauty.  Michelle has got that look in this picture.  So, does Sarah, she catches me in awe.  From moment to moment these past weeks Sarah is just glowing as she smiles; as she turns and gets caught in rays of sunlight.

Later, I listened and discussed with Sarah about everything we had heard.  I was glad to know what Luke has is a lot like lightning.  The odds of being hit with it are the same for everyone.  Our wicked smart dear lady let us know that just because Luke has bilateral renal agenesis that doesn't mean our next child will have an increased risk.  The odds are still 1 in 4,000 kids.  It doesn't matter who your parents are, or what continent you live on, or what century you were born in.  The odds are the same even if your brother had it.  The NOAA's National Weather Service says the odds are higher to be struck by lightning.  They say over 80 years of life your odds are 1 in 3,000 see source. (scroll to the bottom of the page)  So what we learned is that even though we’ve been hit by lightning with Luke, it does not mean we will necessarily be struck again in the future.

To our friend Michelle, thank you for giving us a warm smile in a room full of questions and uncertainty.

Trick or Treat?

by Sarah
On Halloween, my mom (Luke's sweet grandma) and I decided that rather than sleep in late on a Saturday morning, we'd prefer to get up at the crack of darkness, venture over to our local University Medical Center and wait in a line of cars for 2+ hours and get a flu shot! Some called us crazy, others shook their heads, some honked their horns, but that's what we did! KU Med Center was having their annual free flu shot drive through clinic- and we were lucky enough to get one! Most places in town have been out of vaccines and well, I didn't want little Luke (or Joe!) to have to put up with me being sick-y, so we went and we waited.

 

The lines were long, there were some close calls with road rage and line cutters, but once the clinic opened at 8am, the line got moving and things smoothed out considerably.  Mom and I had a great time chatting away and reading one of the latest issues of People and discussing life.  I was hoping that Luke would wake up and do some of his kicks for his grandma, but he didn't. I do admit that I felt like a bad mother for getting a shot on a day that is supposed to be all about fun and candy....but well...let's just say, I ate plenty of sweet treats later in the day/evening to compensate and reward Luke for his great behavior that morning.

 

After returning home from getting the flu shot, Joe and I spent literally the entire day practically rearranging our entire house! We had started to do some of that in order to prepare for Luke's nursery and had purchased some bookshelves that required assembly, had designated some furniture to be sold, had moved some things to the garage...and well, when we learned about Luke's diagnosis, we just stopped.  So, we designated Saturday as our 'work on the house' day and we worked for almost eleven straight hours! It was all trick and no treat!  But, when we woke up the next morning all sore and exhausted, we awoke to a house that had been restored to a restful state, things had been assembled, moved, arranged and cleaned and things inspired comfort instead of cringe.  It will be a great spot to rest and be restored come January and I'm so glad we pushed through all those hours because what felt like a 'trick' that day is now a complete treat. Our little house is cozy and comfortable and ready for this next chapter of our lives.  (And a special thank you to Brian for coming over and helping Joe move some big stuff around!)  Hope you all had more treats than tricks on Halloween!

Sweet face

by Sarah
We had our sonogram last Friday and we were fortunate enough to have the same perinatologist that we had last time- the nice man who explains everything we are "seeing" on the screen, who answers our questions, who takes his time and talks to us like real parents. We really like him.  He also captured this precious little glimpse of our tiny guy for us- our first real look at his sweet little face from the front that didn't appear all smooshed. We were so excited.

Luke is up to 2lbs7oz by this doctor's estimation and is looking "great" aside from the obvious. The doctor did some more educating for us around expectations for how Luke will possibly appear when he is born.  He taught us that because of Luke's low fluid level and subsequent lack of lung development, he will probably have a "bell-shaped" torso- where his chest is more narrow toward the top because he does not have any lungs filling out his chest cavity around his heart.   His tiny abdomen/belly area is normal so will appear to be "wider" in comparison with his little chest. Poor pumpkin! While all of these things are difficult to hear and imagine, we are thankful for the insight and tender care of this doctor to take the time to help us be prepared for our first introduction to our precious son.  Having an understanding helps us in preparing our hearts and mind's eye for when we do get to meet Luke in person.

I've been spending a lot of time thinking about that day when I will get to hold him and marvel at his sweet and delicate, miraculous body.  Imagining the joy of actually holding him in our arms is always quickly followed by overwhelming sadness at the crushing realization that his time with us here on earth will be brief. How we wish he could stay longer and that we could know him more. However, today, we are loving and savoring this glimpse of his sweet face.

October's Storms

by Sarah
 As some of you know, I'm a cloud lover. I love watching the skies and the beauty that is painted across them every day.  I enjoy bad weather and look forward to storms.  Most of all, I love to look up to the sky and see what God has cooking for the day up there and have quite a collection of pictures I've taken of the clouds and skies that I walk underneath every day. Clouds have always brought me a sense of peace and remind me of the bigger beauty in this world. 

In 2009, while browsing in a bookstore, I made the fantastic discovery of a new cloud calendar and of course purchased one for my home and one for my office- its filled with amazing photography of the skies and various fantastic cloud formations found above some beautiful landscapes.

These little bits of trivia about me are all a little bit of backstory.  You see, Joe and I have made it through our October - our month of intentional planning for Luke's arrival and passing.  We spent our October days, evenings and weeks thinking, praying, crying, talking and planning for what will certainly be one of the most profoundly sad and dark seasons of our lives. It has been tremendously difficult for us as we knew it would be (and I could not help but find October's photo on the calendar a tad ironic).  There are still some final details to plan and loose ends to tie up, but for the most part we have gotten the big stuff covered and we have to thank so many people for helping us during these past few weeks- whether you offered us a card in the mail, a voice mail message, a belly laugh, a hug, an email, a suggestion, a fun shared meal out, some tangible help in making preparations, an ear or a shoulder- we are grateful. And we are so excited that October is finally behind us.

It was a giant relief to walk into the bathroom this morning (where we have the cloud calendar hanging) and see that Joe had already flipped us to November. I immediately exhaled when I saw the photograph that will greet us every morning in November...sheer beauty- a sky clearing after a storm.  A daily reminder that storm clouds eventually roll on by revealing beautiful blue skies sprinkled with lovely cirrus clouds- whispers of beauty for the heart. We made it through October and will continue to climb believing with hope that someday these storm clouds in our life will also roll away. Thank you for loving us along the way and for loving little Luke too.  May your Novembers be full of beautiful skies.

Another Glimpse

We have another sonogram appointment this afternoon to see little Luke.  We are looking forward to seeing how big he's getting and hopefully catch a glimpse of his sweet face on the screen!

Thank You Mystery Friend!

by Sarah
Over the past few weeks, we have been showered and gifted with so many thoughtful messages, cards, thoughtful gifts and heartfelt gestures. We have tried to keep up on writing thank you notes for everything, which has kept us busy!  Our lives have literally been overflowing with the love that has been surrounding us and we are SO thankful for everything that has been lavished on us.

Last week in the mail, we received a very sweet and thoughtful gift of some gift certificates for some pints of Luke's new favorite ice cream: Ben and Jerry's! We were so touched by the thoughtfulness of this gift,  but there was not a name signed on the card (not sure if that was on accident or on purpose)!

So, to the mystery friend who went to all of that thoughtful trouble for us- we say a giant THANK YOU! We've purchased some Cherry Garcia and Phish Food so far and Little Luke is loving every bite!*

*Mama will not be loving her extra time on the treadmill in a few months, but that is another story for another day. Right now- life is sweet and good. Thank you again mystery friend!

A sidenote

by Sarah
Working on this blog together has been a great outlet for both Joe and I. Sometimes when you start a new joint project with someone you just never quite know what to expect or how it will turn out! But- as you can tell, Joe is tremendously gifted in the artistic arena.  He loves tinkering around with art and computers and has enjoyed mixing the two here.  He's responsible for our blog design, our awesome title banner and all of our photos and linkage within the blog. He makes this all look exceptionally presentable.  I enjoy the writing aspect of things as well as admiring his artistic talents, so between the two of us and our respective passions, this little blog continues to be a wonderful gift of expression for us to work on together in this season.

Two Months

by Sarah
Today marks the two month anniversary of us finding out about Luke's diagnosis. It's been two calendar months. Two months since we learned that our lives would forever be different than we had imagined and dreamed. Two months that have felt like two years.  For two months we've been climbing a new mountain straight uphill.  Two months of our lives that have been somewhat blurry as we've blinked through our tears. So much is different now.  I wonder what will be different two months from now...so much life to be taken in and lived between now and then...we are holding on tight.

Squeezing in some Fun too.....

by Sarah
Even though this has been the month we dedicated to planning and preparing for Luke's arrival and passing, we also have made a pointed effort to have some fun together too...here's a little glimpse of what we've been up to....

The weekend of the 10th, we set out for the beautiful Flint Hills of Kansas.  Back in July, I was really feeling like I was going to need some intentional time to be alone, be quiet, still and just prayerful about what was ahead (motherhood and major life change).  As someone who loves her alone time, I realized that with a new baby on the way, that precious alone time would become scarce in a blink.  So I got online and researched B&Bs in the Flint Hills (always one of my favorite areas of Kansas) and found one and made a reservation for myself for a personal retreat.  I'm blessed to have a husband who knows how much my alone time means and was completely supportive of me getting away by myself for a little bit.  It was something at the time that felt important and very far away (it was three months into the future after all).  But when we received Luke's fatal diagnosis, my personal getaway quickly turned to a little romantic escape for Joe and I.  While I had no idea what was ahead when I had made that reservation, I really think that God knew that we would need this escape in the middle of our hardest month- and it turned out to be exactly a getaway we needed.

We drove out I-70 to 177 national scenic byway south and spent the afternoon meandering through the prairie.  We stopped for lunch at the historic Hays House in Council Grove and did a little shopping there too. Joe had some of the best pie ever (which I think will become legendary because we still talk about it today)- it was delicious! (Don't worry, Luke did not miss out!)  Our B&B was in a small town further south called Cottonwood Falls.  The weather outside was unseasonably cold (30s) and overcast- perfect for reading by the fireplace, drinking warm drinks, playing cards and wandering the property.

It was a pretty spot and that evening we shared a delicious steak dinner at the one place in town that was recommended- The Grand Central Hotel. Our pace was leisurely and easy and we enjoyed being out of town and away from our reality for a weekend.

The Tallgrass is taller then Joe.

Joe showing me how to set a trap.

The following weekend of the 17th, we went to Manhattan, Kansas with our friends Amy and John to watch K-State play the Texas A&M Aggies. We tailgated in the ultimate spot.  It was away from crowds, had some grass, space for washers...and there were some giant trucks and silo bins nearby, but in my opinion, that just made things more authentic and fun. We had food imported from Aggieville at our easy tailgate and the boys trounced the girls in the best of 7 in washers.

Originally an afternoon game, it was bumped to the prime time TV spot and became a night game.  So while we were expecting to freeze, it actually turned out to be perfect football watching conditions.  This was not Joe's first time to the Little Apple with me, but it was his first time attending a KSU home football game. It was a blast showing him around and introducing him to many of the fun traditions of the Wildcat football fans.  Our seats were on the 4th row on the 35 yard line, so we were pretty much sitting on the field which was also fun.

But the best part was that the Cats won! No one was really expecting a victory, so I was planning to just enjoy the atmosphere with my husband and friends and have that be the "victory," but instead, the Cats dominated the entire game and won 62-14! Our throats were sore from yelling and cheering and poor Luke was getting all jostled around because I could not stop jumping up and down. It was a blast and another perfect escape for our little family.

And then this weekend (the 24th) Joe was off spending the weekend with some of his pals at the Band of Brothers retreat weekend. This happens once a year and is in Southeastern Kansas at the Shalom Retreat Center.  The teaching is by John Eldridge and is based on his amazing book Wild at Heart.  He attended last year and loved it and I was so excited for him to return again this year with some of his closest friends...especially during this season of our lives.

While he was doing that, I traveled to Stillwater, OK for a girls getaway weekend with my friend Jenny.  We drove down to spend the weekend with Jenny's sister, my dear friend, Laura whom I miss terribly.  Laura and her awesome husband and adorable son moved there last year so that Eric could work on his PhD, and there has been a hole in KC ever since.  So I'm looking forward to some good girl time, great conversations and lots of laughter (and I'm sure a few tears as well).  Good friends all around. *

So lest you think we are just locking ourselves away and being sad all the time, we just wanted to share with you some of the fun things we are getting to do as a family as well.  We are working hard at living our lives fully despite our circumstances. Sometimes you just have to push back the sadness and live a little bit- or at least try.

* Editor's Update: Due to an unexpected attack of a head cold, Sarah's trip to Stillwater was postponed, and Sarah spent the weekend in bed.  She's still looking forward to a trip to Stillwater...someday!