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.