A Special Weekend and Special Songs

Thanks to Shannon for this Beautiful Photo Gift of Karinne's Name on your Angel Tree.  I love it!!

This past weekend, Curt and I had a really special experience meeting and visiting with 6 other Kansas families who have lost babies this past year or so.  Our wonderful friends Martha and Denise, who we met through Choices Medical Clinic's perinatal hospice program, hosted a special gathering for all of the families they have worked with this past year.  We had a lovely dinner together and then were able to share our babies' stories in an open and loving environment.  It was such an incredible experience - getting to meet these other families and talk openly about what we've all gone through.  And without the uncomfortable silences and awkward subject changes that we've all experienced in other settings when we've tried to talk about our babies.   I had heard about some of the families and had contact with a couple of them beforehand.  Martha & Denise had shared my blog with several of them too.  It was humbling and yet oh-so-touching to hear how Karinne's story and my candid journals had been such a help to other families.  It really was an amazing experience!  Sending much love and big hugs to all you sweet families and Martha and Denise too. 

Also with today's post I wanted to share a song and video that really touched me earlier this month.  Be sure to pause the playlist at the bottom of the page before starting the music video.

A friend shared this song with me and I was watching it when DaNae came and asked me what I was looking at.  So I started it over from the beginning so she could watch it along with me. 

When we finished watching it, she said with a smile something like, 

"I bet Karinne is in line to see Jesus."  

Hmmm, so true and such a beautiful thought - sweet daughter of mine!

A good reminder of the true meaning of this blessed Christmas season.

I also wanted to share another song that touched my heart.  Shared by another friend - "Christmas in Heaven"

"Oh I wonder - What Christmas in Heaven is Like. . . . ."

Karinne's Website Reaches Another Family in Need

I have been deeply blessed this week - and saddened as well - to find out how our website has been of great help to another family experiencing acrania.  On Monday, I received the following email:

Dear Mother of Karinne,

I simply want to say thank you for sharing your story. I found the blog you made in memory of your sweet baby girl, Karinne, when I googled the phrase "what is acrania".  I also have a sweet baby girl. Her name is Luisa.  She is 20 weeks (in gestation) old.  And we just found out, on the same day that we found out that we were having a girl, that this sweet daughter of ours has a congenital defect called Amniotic Band Syndrome which has caused her to have acrania.  We were, of course, devastated and so heartbroken.  We have been blessed with two boys but were so looking forward to having a girl. Reading your blog helped me to have more peace about our situation, as well as giving me some positive ways to cope, and enjoy this precious time with my daughter.  Thank you again and God bless.

Sincerely,

Kat

My initial reaction upon reading this was MANY MANY tears.  Tears that this other family was going through this too.  And tears that one of my strongest desires and greatest prayers for this website had been answered - That a family given the diagnosis of acrania could type it into google, find Karinne's site, and be inspired encouraged and strenghtened for their own personal journey.  Thank you LORD for leading Kat to Karinne's site - and for leading her to contact me.   

We have emailed back and forth several times this week.  And we have encouraged each other.  Kat shared her new blog site with me - in honor of her sweet Luisa - and I would like to share it here.  Here's a link to the post where she so kindly honored Karinne and I with her gracious words:  Beauty for Ashes II

Please remember Kat, Luisa and their family in your prayers as they begin this very difficult journey. 

Karinne's Tree and Stocking at Home

Today I wanted to share photos of Karinne's tree and her stocking that we have put up at our house.  It has been such a comfort to me to be able to create new traditions with our family that involve Karinne - even though she can't be here with us.  

The pink bunny and the white bunny are twins to the ones we placed with Karinne in her treasure box.   The larger pink one plays a sweet lullaby.  The angel bear was another special gift during the pregnancy.  

Karinne's cute little footprints are on this lovely bulb.  It turned out pretty cute!  On the back side, I painted her name and birthdate on it.  I keep rotating it to see each side. 

We made 4 of these sweet impressions of Karinne's hand and they make such pretty ornaments.  My plan is for each of her siblings to have one of these for their own trees someday.

There are 3 of these porcelain angels on Karinne's tree.  Our neighbors whose children frequently come over to our yard to play brought these over one night as they were finishing decorating their tree.  The mom Rachelle said, "I collect angels and have 2 sets of these.  Courtney said we should give them to DaNae's family for Karinne's table."   I was very touched by their thoughtfulness and think they made a beautiful addition to the tree.

The tiny little hearts with footprints that are spread throughout the tree are the remaining pocket tokens that were given to us as a sweet reminder to our family members of Karinne.  They made such a cute little added touch to the tree. 

The garland of ribbon came from the wagon we used to carry Karinne's treasure box out of the church the day of her funeral.  Which I've probably never posted about....  We decorated my parents' little red wagon with white satin ruffles and this ribbon and used it to carry her from the church to our van at the end of the funeral.  It was a sweet and symbolic way of taking her for one last special ride as a family.  I've only just this week taken off the decorations and sent it home with my parents.  It has been sitting in my studio room for 7 months - waiting for me to be okay with taking it apart.  It was only now, with a new special use for this ribbon in remembering our sweet baby girl, that I was able to finally let the wagon go. 

And of course, her sweet little pink and brown bear hat sits at the top of the tree.  

 And this is Karinne's Stocking:

I was very happy to find this beautiful stocking with the sparkly snowflake on it that matched the red on the rest of ours SO well.  And I love that the snowflake gives hers a "heavenly" touch to set it apart from the rest.  I did have to change the top from a fuzzy brown to green to match the others.  But my sis, Jessica, had this material that is a great match and I think it turned out really well.  DaNae was so very excited to hang Karinne's stocking next to hers.  And she kept after me to get it done.  I'm so glad she loves her sister so much!

The Worst Day of Our Lives

One Year Ago Today - December 9th, 2010 - was

the worst day of our lives.  

D Day

Doom's Day

Diagnosis Day

Death Day

The day we found out that our precious daughter would die.

I've thought about this post MANY times - thinking through what approach I would take.  A depressing one?  A hopeful one?  Somewhere in between?  

What I've decided on is posting a journal entry I wrote one month after we found out Karinne's life would be cut short.  It's a journal that I've never shared with anyone before today.  It tells exactly what we went through on that terrible day - the worst day of our lives.  And the bitter, hopeless, desperate sadness we were feeling.  Some of it is written to Karinne and some is written about her. 

January 9, 2010

One month ago today, our world about you came crashing down.  Silly, stupid, naïve me – I hadn’t even imagined that something could go wrong with our baby.  We had had 3 easy pregnancies, 3 healthy babies, 3 beautiful blond-haired blue-eyed children.  How could anything be different this time?  My biggest worry had been about whether or not I would be happy with a boy when I wanted a girl so badly.  And I was debating so much about finding out the sex of the baby for the first time ever.  I’ve always said I wanted to be surprised & that it helped me get through labor knowing that I would soon find out.  But this time I had nearly convinced myself to find out so that if it was a boy, I would have time to adjust to the idea.  Silly, stupid, naïve me.  I should have been praying to God that our baby would be healthy and perfectly formed, not praying that he would help me to accept a boy if I needed to.  What a cruel, cruel joke. 

One month ago today, we went to the Maternal Fetal Clinic in Wichita to have a sonogram with a specialist.  The routine sonogram in Oakley one week before had possibly shown fluid on the baby’s brain.  Dr. Christina Goodwin had called me the next night to tell us the scary news.  But she was reassuring that these techs may not really know what they were seeing since they do sonos for all sorts of things besides babies.  And when she talked to Dr. O’Hara in Wichita, she too thought it was far too soon to see anything like that.  She didn’t even schedule us to see her after the sonogram, believing that it would just be a mistake made by an inexperienced western Kansas sonography technician.  I think back & can now guess why that tech with her dark bobbed hair and cute glasses had been so quiet and not talkative like normal.  She had seen something she couldn’t let on about.

One month ago today, we drove 4 ½ hours on an Oakley Schools snow day to finally find out if our baby would be okay.  It had been a long almost week and despite the possible bad roads, we decided to give it a try since we couldn’t bear to wait.  I think our babysitter was very nervous for us when we dropped off the kids, but she understood too.  Thankfully, the roads were pretty good – nearly always clear in the driver’s lane of the interstates.  And we actually had time to stop at IHOP for lunch in Salina.  We talked about stopping on the way back to look for a new mattress and eating supper at Red Lobster.  I was finally getting my appetite back so that sounded delicious.  Too bad we were too sad & in shock to do either of those things on the way back. 

One month ago today, we talked about how we needed to get started working on converting my walk-in closet into a nursery for the new baby.  We intended to make some changes to the closet in our room to hold more clothes, and fix up the walk-in for a tiny but cozy baby room.  We had always disliked the way it was done in there anyway, so we could turn it back into a better closet someday.  I guess now, I’m glad that we hadn’t started on the project yet.  But nearly every time I go in there, I think about how this was supposed to be your bedroom and how I would have decorated it with the ark & animals we had always had in our children’s nursery.  And now, you’ll never sleep there, cry there, be changed there or dressed there.  I’ll never nurse you there or hold you there or look in awed wonder upon your precious little face there.  Ohhhh, how badly that hurts my soul!

One month ago today, we chitchatted with the Wichita sonogram tech, who seemed about my age , about how she grew up in Quinter (or was it Grainfield) and how she used to go to Oakley to do sonograms for a time.  I remember seeing the baby’s face and joking about how it always looks so strange from that angle.  It seems she may have gotten quieter as time went on.  At some point she asked if we wanted to know the sex.  We asked if she could tell.  She said – “maybe.”  We agreed we didn’t want to know a maybe.  She finished & took us to meet with a nurse who would take our history.  Thinking back – I wonder if she had told that nurse right away that something looked wrong.  We guessed that she had.  The nurse, a middle aged woman, was so friendly as she asked the MANY questions about both our family histories.  At the time I wasn’t all that concerned about this part – it was just routine right?  The only thing was, while we were doing this, the technician was conferring with Dr. O’Hara & they were looking up information about our baby’s diagnosis.  And most likely trying to prepare themselves for having to tell this “nice couple” the terrible news they had discovered. 

One month ago today, they told us that Dr. O’Hara was going to come meet with us.  I’m not sure that it struck Curt as a bad thing, but I was more & more nervous with every second.  She came in, shook our hands & introduced herself.  When she sat down, I think I knew it would be bad, but did I ever imagine fatal?  I think I went into a bit of shock as she spoke and it really didn’t hit me for awhile.  Curt broke down before I did.  It was such a surreal experience that I never imagined myself being in.  They handed us a box of tissues which I suppose they sadly need more often than you would think.  The nurse (I wish I could recall her name) told us of how she had lost a baby to stillbirth 30 years ago.  She said you never get over it, but you give your child dignity and you honor them by carrying them to term.

One month ago today, we heard the name for a terrible congenital anomaly – Acrania.  Our baby’s skull had not formed properly to protect the baby’s brain.  A terminal condition.  The baby would either be stillborn or die shortly after birth.  We may very well go full term only to lose our precious child.  Dr. O’Hara mentioned that termination was an option – but I’m so thankful to God that they didn’t push us in that direction in any way.  She said that acrania was very rare, that it seems unlikely to have a reoccurrence in subsequent pregnancies, & that it was not something that we did wrong or that we could have prevented. 

One month ago today, we learned the sex of our 4^th child.  Dr. O’Hara gave us a little time alone to soak it in & comfort each other.  Then she took us back to the sonogram machine to show us the problem.  The baby’s skull should show up as a bright white rim.  The white stopped at the forehead.  You could see the contour of the brain – less intense & slightly bulgy.  I asked Curt if we wanted to find out about the “maybe.”  Meaning the sex of our baby.  When she realized what we meant, she said immediately – “It’s a Girl.”  This of course broke our hearts wide open & we sobbed into each other’s arms.  She and the technician both agreed that even though it was early, the baby appeared clearly female.  She showed us on the screen & even gave us a photo with “It’s a Girl” for a caption.   She asked us her name.  When we hesitated, she said it’s early to have one picked out.  I said we’ve had a name picked out since our first boy.  But we didn’t share it.  Later in the car, through our tears, Curt said something like, “Ever since we heard it was a girl, I’ve been thinking of her as Karinne.”  I cried, “Yes – that’s her name.”  A month later, several family members know that we know the sex.  But we haven’t shared it with any of them yet.  It will break their hearts all over again to find out – as it breaks mine every time I think of losing my little girl – my Karinne Claire that I have longed for to complete our beautiful little family.  A sister for DaNae and a little sis for the boys to dote over and protect.

One month ago today, we spoke with Denise (our hospice nurse & lifeline) for the first time. . . . 

One month ago today, we told the news for the first time. . . .

One month ago today, we found out we would have to break our childrens’ hearts with this news. . . .

One month ago today, we thought of things we could make for our little girl.  Although we barely talked on the way home, one thing we both thought of was Curt building the burial casket for our child.  And I know that I want to make a woven blanket to wrap her in.  And perhaps another one for us to keep.  We need to start on these soon, to be sure they are done in time.

One month ago today, our dreams for our fourth child playing cheerfully with her siblings were stolen from us.  Watching the kids play today, playing so well together for the most part, I couldn’t help but picture a beautiful blond little girl trying to keep up with her older sister & brothers.  I realized how she won’t get to play all the imaginative make-believe games our children come up with.  This morning they were all up on the top bunk – DaNae was the mother jaguar and the boys were her babies that she needed to get food & water for.   Running around with capes being super heroes, playing with Noah’s dragons, building horse stalls, watching movies together, playing bucking bulls or riding stickhorses around the circle racetrack of the main floor.  Just a few of the wonderful things our first three munchkins do together for fun – Karinne will never have the chance to do with them.

Today – I’ve felt her move.

It’s few, faint and far between so far the last few days.

But she’s there. 

 Please God – I pray that I would be able to cherish the time spent with her during this pregnancy –  

her lifetime. 

 

Christmas Decorating at Karinne's Grave

Last Thursday - December 2nd - was the anniversary of our first sonogram with Karinne.  The last day that we were blissfully unaware that anything was wrong.  The following night our doctor called to tell us that there appeared to be fluid on the baby's brain and through blinding, but hopeful tears, we made plans to see a specialist the following week.  As I reflected on those events from one year ago - it seemed so strange and symbolic to be doing the other things we did that day.

We signed and mailed the final design plans of Karinne's monument.  It is such a relief to have it designed just the way we want it and I so look forward to the day when it is ready to be installed.  I know it will be simply beautiful!  (BTW - it's very similar to what I already posted here - only with a prettier "K" on the front and slightly smaller footprints on the back to be the same size as her actual feet.)

And the best part of last Thursday was the beautiful weather and how it allowed us to go put up a special tree at Karinne's grave.  I had been planning to put a tree of some sort at her grave and I was inspired by a few other baby loss moms to make it really special.  The photos turned out beautifully, so I have included a lot of them here to help tell the story of what we did.  I know this will become a special tradition for years to come.

When we got out there, I gave each of the kids a sharpie and a couple of bright pink ornaments that they could write on for Karinne.  They were each very excited to do this!

DaNae wrote Karinne's initials inside a heart and used "fancy writing" as she calls it.  She also wrote her own name.

We also each had a glittery silver ornament to add to the tree - each with special meaning. 

DaNae wanted an angel for hers - to remind her of her sister.  This sweet winged fairy was the closest we could find.  It also reminded me of a little dancing girl - which I loved!

 

 

Noah put his name on each ornament - in his cute kindergartener way - and drew an angel, a heart, and a Christmas tree.

Here is a close up of his sweet tiny angel drawing.  He has drawn several like this for me and I just LOVE them!  Not sure which are the wings and which are the arms - but it's SO CUTE!

 

 

Noah chose this bow for his special ornament.  When I asked him why, he said, "It's like the thing angels have above their head."  "Like their halo?" I said.  "Yeah - like that."  

Ian did his best to draw on his ornaments and I wrote his name on this one.  I didn't ask him what he drew, but I should do that.  Could be interesting what he might say. He was very proud of them!

Ian chose this dragonfly for his special ornament.  At the store when we were picking them out, he kept saying, "I want the fly! I want the fly!"  I thought he meant the butterfly one, but he kept insisting - "No - the fly!"  I finally figured out he wanted the dragonfly.  When I asked him why he pick it, he said he thought it would be pretty for Karinne.  And he was right!

 

By the way - you may be wondering from these photos - "Are they really in a cemetery?"  Well - we really are.  But we chose Karinne's gravesite to be the farthest one out - so far.  We wanted to have plenty of space around us where the kids could run and play without being on top of other graves.  Although sadly, there have been several new graves  go into the area lately.  We have plots where Curt and I will be buried with her someday.  We are hopeful that someday more trees will be planted along the center path nearby.  AND - being that it's western Kansas - we get A LOT of wind.  So we made sure to secure the tree to a spike driven a foot into the ground.  And we secured all of the ornaments with wire wrapped tightly.  Hopefully it will all stay intact!

Curt put on a deer ornament for Karinne.  This is to symbolize his hobby of deer hunting and shooting sports - which he enjoys doing with his children - and wishes he could have done someday with our little girl.

 

 And I chose this flower ornament because it reminded me of the garden we planted in her honor and the enjoyment, reflection, and "something to do with myself" that it provided me this summer in her absence and will continue to do in the years to come.

 

We also added a few little glittery snowflake ornaments that each have a little jingle bell attached.  I figure they will make sweet music for our baby on breezy days.  By the time we were finished, the sun had set - and boy! did it get chilly fast.  Our hands were pretty cold by the time we left.

Such Cheesers!!!

It turned out pretty well - I would have to say.  And the beautiful glow of the sunset reflected in the clouds was such a lovely and heavenly touch to the evening and to these photos.

I would welcome any family and friends who would like to add an ornament to Karinne's tree to please do so.  Just please do write your name on it somewhere so we know which sweet loved one it was from.  And please also make sure to attach it securely to the tree!