Friday, October 30, 2009

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!

Tuesday, October 27, 2009

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 much life to be taken in and lived between now and then...we are holding on tight.

Sunday, October 25, 2009

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's a little glimpse of what we've been up to....

Fall in the Flint Hills - 060

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.

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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.

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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.

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The Tallgrass is taller then Joe.

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Joe showing me how to set a trap.

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Fall in the Flint Hills - 092

Luke and Joe's K-State Game - 04

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.

Luke and Joe's K-State Game - 08

Luke and Joe's K-State Game - 15

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.

Luke and Joe's K-State Game - 26

Luke and Joe's K-State Game - 06

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.

Band of Brother's Retreat - 12

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.

Band of Brother's Retreat - 05

Band of Brother's Retreat - 19

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Band of Brother's Retreat - 33

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!

Wednesday, October 21, 2009

Midway Point

Fall in the Flint Hills - 046
by Sarah
Well, we have made it to the midway point of the month and I have to admit, it has been a LOT more difficult than I had prepared myself for.  BUT, in spite of the struggles, we have made and continue to make significant progress on our plans for Luke's brief time here with us.  As stated earlier, Luke's arrival will be early in the new year and we are planning a celebration service to honor his life to be held a few days later.

We have met with and spoken to pastors, friends and musicians, several different doctors, various organizations, counselors, social workers, photographers, genetic specialists, family members and friends as we have made our way to this point.  There have been days, events and conversations these past few weeks which have pushed me past my emotional limit and I have found myself unable to stop crying for hours. Then, there have been other days and moments where I am surprised at the peace I feel in my heart while planning how we are going to send our little boy off to meet Jesus. I know that the peace we feel and the comfort we receive is thanks to a lot of prayers being lifted up on our family's behalf and we are grateful.  Walking along this path is literally a day by day, hour by hour process.

When we first started this month, I was terrified to even think about or imagine what those precious few moments with Luke would be like for us.  I could not imagine saying both hello and goodbye in a moment's time. I'm still scared of that unknown....of the afterwards and knowing he's not with us any longer but I'm doing better in at least being able to think about it for more than 10 seconds at a time without breaking down. While I know that those moments must remain "unknown" until God brings them to pass, I'm finding small nuggets of comfort as we come into contact with people who have walked this path before us and are kind enough to share their experiences with us. It helps me to prepare my heart and my mind as best as I can little by little. I still become extremely teary thinking about it all, but I'm learning that that state of being is pretty much my new "normal" so it does not upset me (the crying all the time) as much as before.  Strange what some forms of "progress" look like!

As we continue to prepare, we are learning about all kinds of ways we can honor Luke and preserve our memories of his presence with us.  We plan to make molds of his tiny hands and feet, we look forward to our little ink prints of his hands and feet as well.  Our dear friend Todd Messenger (who captured our wedding through his beautiful photography) is going to be our photographer on Luke's birthday. He volunteers with an organization called Now I Lay Me Down to Sleep and will be with us the day Luke is born. We are so thankful for the gift of his presence and talents that day.

So we continue forward with our list of things to plan and prepare, but recognize that despite how difficult this journey has been so far, we are thankful for all of the love and support that has been lavished upon us to get us this far. We could not do this without the help we are receiving from our families, friends and church community.  Thank you for walking beside us on this difficult path.

Monday, October 12, 2009

Chunky Monkey

by Sarah
Joe has started a new tradition for our little family.  After our appointment last week with our OB, he decided to take me and his little son out for some delicious Ben and Jerry's Ice Cream to celebrate our "good report" (and minimal tears from mom) at the doctor. 

I've always tried to stay away from the deliciousness of Ben and Jerry's knowing that once I tried some, I would never be able to eat any of my sugar-free vanilla yogurt that is in our freezer again.  And, well...I was right.  Ben and Jerry's deserves all of their hype and rave reviews! My ice cream that afternoon was AMAZING and I have to say, I'm looking forward to continuing this fun tradition after our next appointment with Dr. Nichols...even if our appointment is at 10am!  Baby Luke doesn't know how to tell time and I would not want to ruin his fun!

Luke's Birthday

We had our first "normal" appointment last week with our OB for our regular 4 week check since receiving Luke's diagnosis.  Everything with Luke was great-we got to hear his heartbeat and Dr. Nichols heard him moving around on the little dopplar.  She said his size was on target and that my size was as well. 

We spent the majority of our appointment time with her discussing Luke's arrival in January.  In our efforts to get arrangements made in advance, we had prepared a giant list of questions for her.  She was amazing and provided us with as much insight and information that she could offer, and also is connecting us with people who can answer the questions she could not.  The most important decision we made that day was that (assuming nothing happens in the meantime) Luke's birthday will be January 4, 2010. He will be delivered to us via C-section in hopes that we will be gifted with a few precious moments with him. 

I can only speak for myself, but as we tackle making arrangements for his arrival, my heart continues to be overwhelmed with sadness and at time waves of fear and panic. We are working on "planning" as much as we can control for that special day, but there is still so much unknown that will remain that way until the day arrives and we breathe in those moments together as a family. 

I'm continually thankful for my amazing husband who has never once left my side since we have received this news. His gentle care for me and for Luke has been life sustaining for me.  Even though we only know part of what is ahead for us in January, I'm able to find glimpses of comfort in knowing he will be with me every minute, every step of the way. I'm a very lucky girl.

Tuesday, October 6, 2009

The Kick is Good!

by Sarah

The medical experts have told us numerous times that little Luke won't be moving around as much as a baby who has a lot of fluid would and so therefore we would probably not feel him kicking very much.  At the time they told us this, I had not really experienced feeling him move or kick around yet, so I sadly set my expectations a lot lower than they would have been for experiencing this "normal" yet exciting element of pregnancy.  However, it seems that Luke did not get that message and continues to kick my lowered expectations right on out of the water!

In the past ten days or so, I have started to feel him moving around and kicking inside my belly on a pretty regular basis which has been thrilling and so much fun!  My heart was aching though because I desperately wanted Joe to be able to feel him moving too so he could get to know his son in a new and different way. However, try as he would, he could not yet feel Luke moving from the outside....until late last week!  I had been praying that Luke would continue to grow so he could kick really hard so that his daddy could feel him and like I mentioned, it finally happened last week!  I about burst into tears I was so excited for that because I know that the bonding experience is so different for the mothers-to-be vs. the fathers-to-be based on simple biology! So when we found out that our moments with our son would be precious and few, I started praying for ways for Joe to connect and get to know little Luke too and this was a huge one (at least for me!) 

Now, its practically a nightly ritual from about 10pm- 11ish, Luke kicks away for his dad and we all get to enjoy some family time....although sometimes mamas need their sleep- but I'm not complaining!

Our Sonogram

by Sarah

We had our third sonogram last Friday and it went "well."  We had a new Perinatologist (new to us) looking at Luke, and he too was unable to locate any kidneys or bladder in our little guy.  We were not surprised by this and felt somewhat comforted that we have now had three pairs of some of the best eyes in the business looking at Luke and all are landing on the same conclusion.  Although it is still difficult to hear, at least we were prepared and not shocked by what we heard.

This particular doctor was our favorite of the three we have seen so far because he took his time in looking at Luke and patiently explained to us what he was seeing and what we were looking at on the screen.  Due to the very low levels of fluid, visibility is difficult even for the professional eyes, so its especially hard for us to discern what our little boy looks like.  However, this doctor very clearly talked with us about what we were looking at and patiently mapped out the top, right, left, bottom etc of Luke's little head and belly.  We could "see" his brain and his heart and his femur bones very clearly which was fun.  Luke is presently very comfy laying on his back straight across my belly with his legs folded up near his head.  It's pretty much the same position he was in last time we got to peek in at him.  He's moving around quite a bit these days, so we're guessing he just likes to be in that place and position which is fun to think about and be able to picture him in there.  He weighs approximately 1.5 pounds now!

The doctor also spent time talking to us about some things we can expect when Luke is born such as his muscle tone.  Since there is not a lot of fluid in there with him, he does not have a lot of natural resistance against his limbs as they move, so his muscles will more than likely be tensed up and somewhat clinched when he is born because he has not been able to work them much like other babies would who have fluid resistance.  We appreciated this information as anything that can help us prepare for what might be ahead is helpful.  While we did not leave there with the joy of a miracle in healing, we did leave there with the absolute joy of getting to see our little guy on the screen.  What a gift!

by Joe
We also got to see his little hand reaching out, waving hi, and wanting to give his first handshake.  See the 5 white dots in the photo below?  Those are his fingertips.  His little touch melted my heart.

Thursday, October 1, 2009

Sonogram #3

Our doctors want us to continue to have sonograms every 4 weeks in order to track Luke's growth, positioning, functioning, and fluid levels. Our next appointment is tomorrow afternoon.  We are both looking forward to seeing his little shape on the screen...


It's October.  My favorite month of the year.  For me it usually represents the "official" beginning of my favorite season:  fall.  However, this year October means something different to us.  We've decided that October will be the month where we camp out on what Luke's arrival in January will be like and how we would like to experience those incredibly difficult days ahead on our horizon.  Honestly, any time I even begin to think about what those days will be like (his birth, his arrival into our arms, his subsequent passing, saying hello and goodbye in a single moment, making service arrangements...) I can feel myself begin to panic.  My heart races, my eyes well up, my breathing becomes quick and shallow and I immediately begin to desperately feel myself sliding over the edge into complete dispair and fear of not being able to survive it. 

This October Joe and I will be frequently pushing into that difficult place of panic and heartache. Our goal is to plan/arrange for as many aspects of Luke's arrival to his memorial service as we can.  It is going to be a difficult and scary month to say the least, but we hope that by making as many arrangements as we can now, our hearts will be freed up and at least partially released from the fear of what is ahead so that we can celebrate the holidays and our final few weeks of Luke's life with joy and prepared hearts.  We long to celebrate and honor what we have been given, a sweet angel baby. Please pray for courage, peace, comfort, strength and protection.

With Love,
Joe and Sarah