Monday, January 20, 2014

Time...

I haven't posted in forever.  To be honest, I had this mentality that the more I posted, the further the posts about Kale would get pushed down, and eventually they would no longer be the forefront of the blog.  Which since it's still the fore thought in my mind, I didn't want that.

But here I am.  Posting anyway.

So much has happened in the past 6 months since Kale was born.  Katryn started Kindergarten at a local charter school.  She turned 6. Martin started speech again, and is doing great. We moved.  Sold our house and moved into a new house.  Well, into my grandparents basement first, and THEN into a new house.  And it's been wonderful.  We have more space, it's newer (read: nicer), closer to everything, and almost everyone save our friends we left in our old town.

We painted, spruced things up a big, and are loving it.  (House tour to come later.  After more boxes are unpacked) But for the first time, I have family pictures hanging on my wall!!

These are the pictures we had taken in November.  It was hard to choose a family picture, so I'm just going to share two of my favorites.


We almost went with this one for our wall, but ended up going with the ones below.  The light was reflecting off the picture of Kale a bit, and they didn't turn out quite nice enough--aka, he looks kinda splotchy.  But we didn't want to take the glass out of the frame, because it was raining pretty good!


We hung this on our wall, and underneath it, put pictures of all three kids.




The picture of Kale was cropped to fit into a 8x10 frame (so no, I don't really have a picture with my knees hanging out like that on my wall).

I'm glad we have FINALLY put family pictures on our wall.  It truly does make our house feel more like a home.  And for me, it helps me feel like Kale is acknowledged as our son, and an important part of our family.  Very important to me.

And that's all I'm writing today.  Maybe I'll keep up on this blogging stuff...

Friday, August 30, 2013

Kale's Graveside Service--July 19th, 2013

This has been a post I've been meaning to write, but has been too difficult to face.  I think this day has topped the list at Worst Day Of My Life.

But I've been wanting to write this down, because we had a small private service for Kale and some of our family weren't able to attend, and we didn't invite our friends.  Because how could we keep it small and private and still invite everyone who has been so supportive of us?  We couldn't, so we kept it to our immediate family only--siblings and grandparents.

We started off by meeting my mom at the funeral home.  We chose the mortuary we did because my friend's husband works there--it's his family's business.  Her husband was actually the one who came to the hospital and picked Kale up.  It gave me a small measure of comfort, knowing that they would treat Kale's body respectfully.


Each of the kids got Kale a little gift.  Granted, that occurred back when we thought we were having a girl, but it's ok.  Boys can have pink toys too.  I also made 3 matching little rag quilts with hearts on them, for each of the kids.


Yes, my kids are matching.  This shade of blue is Kale's color. His quilt I made him had this blue in it, and the blanket my mom made him to be buried in is this color of blue.  A few people at the graveside were also wearing this shade of blue.  I will always think of Kale whenever I see this shade of blue now.


My amazing mother made this little burial gown for him.  We were expecting a girl, and I had made a perfect little burial dress, but it was so difficult for me (I've never sewn clothes besides pj pants before) that I ran out of time to make a boy outfit just in case.  But my mother anticipated that we might need a boy outfit and made this one.  And then embroidered his name on the front.  It was perfect for him.

Matt purchased the necklace for him.  The SOH stands for Son Of Helamen, referring to the story in The Book Of Mormon about Helamen leading the 2,000 young men into battle and how they were not afraid of death because their mothers had taught them well.  Helamen cared for those youth like his own sons.  Matt has worn that same necklace for many years.  As long as I've known him he's worn it.  My 3 boys all have matching necklaces.


My mom took some family pictures for us.  Which to be fair, aren't amazing because the kids were sick of sitting around, and Matt and I had been crying for a while.  But all of us are in the picture, which is VERY important to me.


We spent a long while at the funeral home with Kale.  My mom took the kids, after they gave him the toys they brought.  Matt and I just sat holding him, and remembering every bit of him.

My friend, who's husband works at the mortuary, had given me a gift of a remembrance necklace.  A lady comes and takes a fingerprint and makes a necklace out of it.  It was one of the nicest gestures.  I had wanted something like that to remember Kale by, and to wear so I would always have him with me.  And now I will have his toe print.  After the lady came and took his print, we dressed him and wrapped him up.  It was one of those situations where I knew i didn't want to put him down.  I didn't want to have to say goodbye.  I knew that this would be the last time I held him in my arms.

It's funny how you never quite realize the meaning of something until you feel it.  I never knew that my arms would literally long to hold him.  How I could be sitting somewhere and feel like something was missing from my arms.  It was a startling feelings the first time it occurred.  Now it's just a painful reminder.  But it's a real feeling.

The funeral director (which was supposed to be my friend's husband, but she went and had a baby instead so he was with her) was so kind.  He didn't rush us at all, and just gently reminded us of the time at 11am, when we were supposed to be at the cemetery.  But he told us that it didn't matter, we could stay there as long as we wanted.  It was on our time frame.  I didn't want to leave, I didn't want to have to put Kale in the tiny casket.  It was so hard to have to pick a casket the day before.  It was perfect for him, but it just felt so unfair.

A lot about this has felt unfair.  I try not to think like that, but it's hard not to.  It's hard to keep the faith that God knows what is best when something so painful is happening to me directly.  It's very hard.  Another club we joined that you never want to be apart of (the first was the premature baby/nicu club with Martin).

We held Kale as long as could, taking many pictures of him, and then placed him in his casket.  He was all wrapped up like I wanted him to be, in the Teeny Tears diaper I made him, the gown my mother made him, the necklace from his dad, the blanket from my mom, the blanket from me that matches the kids little blankets laid on top of that, and the toys from the kids tucked next to him.  It was perfect.  He was perfect looking.

One of the hardest things that day was saying good bye to him and closing the lid on his casket.  I didn't want to do that.  I wish I didn't have to do that, it made it all too real.  It was like before that, I could pretend that he was just sleeping in my arms, that he was there with me.  But now he's not.  It just hurt more that I could bear.


The day before, Matt and I spent some time picking pictures and creating a program of sorts for the service.  We decided that since many people didn't get to meet Kale that we wanted to have pictures on display as well as the quilt I made for him, and held him in.  It turned out perfect, and I love that I now have pictures of him in our house for our kids to be reminded that they have a little brother, and I can see him too.

The sunflowers are rather important too.  You see, while we were driving to the hospital, I kept seeing them along the side of the freeway.  They kind of became a focal point to me, and now they also remind me of Kale.


We kept the program simple.  Matt conducted and held himself together MUCH better than I did.  I hardly stopped crying the entire day.  My eyes literally hurt from crying so much.


I even managed to read a poem.  I didn't think I'd be able to, I thought I would be passing it off to my sister to read for me.  But I managed it.  This is the poem I read:

Don't think of him as gone away
his journey's just begun,
life holds so many facets
this earth is only one.

Just think of his as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.

Think of he must be wishing
that we could know today
now nothing but our sadness
can really pass away.

And think of him as living
in the hearts of those he touched...
for nothing loved is ever lost
and he was loved so much.

-Ellen Brenneman


 We played the song "Tribute" by Jon Schmidt.  I love this song, it was one of the first Jon Schmidt songs I learned to play on the piano.  I love it for many reasons.  He wrote this song for his older sister, who had taught him to play the piano, when she died.  The song starts out rather mellow, and then there's a pause about half way through.  And then it picks up.  It's so easy for me to visualize that as the point when we're reunited in heaven.  We we're finally free of the pain and sorrows of this world and are just overwhelmed with the happiness that comes from being with those we've missed.

After that song, Matt told a little bit about Kale's short life, and the blessings that came along with him, how things fell into place like we wanted them to.

Our bishop spoke a bit, but to honest I don't remember what he said.  At that point I was just in my own grief and try as I might I couldn't focus anymore.

We had a balloon release with the kids, while we played an instrumental version of "Families Can Be Together Forever".  This was important to us, because it included Katryn and Martin.  We told them that we could sending balloons up to Heaven for Kale.  This was something they could grasp a bit better, and be able to be a part of everything.





After the balloon release, Matt's grandfather dedicated the grave.  Like with the Bishop, I couldn't remember what he said, but I remember it was perfect.  I'm so glad they were able to drive down from Idaho and be here for the funeral.


Here's the table we had set up.  We even had a guest book somewhere for everyone to sign, and in which I am in the process of adding things to.  It's actually more of a memory book.  There's a lot in that book!


We buried Kale in our hometown, where we are moving back to soon.  I wanted him there so we could visit his grave easily.  He's a part of our family and I want to make sure our kids always remember that they have a little brother.


Hands down, the hardest part of this day was driving away.  We stayed for a while after everyone left, just sat there in front of his casket together.  But eventually we did have to leave.  And I hated it.  Driving away from our baby, leaving him there by himself was horrible.  I know it was just his body lying there, but that doesn't make it any easier.  Looking back as we drove away, and seeing his little casket lying there alone is more than a mother should have to bear.

Overall, everything came together so nicely, the program we designed was nice, and for a funeral it was wonderful.  I just wish we didn't have to do it.

Thursday, July 25, 2013

The Story of a Boy Named Kale

This is a story of a boy named Kale Link.  A small little child who was only physically with us for a short, short time, but will forever be in our hearts and minds.


The day he was born was a day full of tender mercies from the Lord.  He was born on a Tuesday--July 16th, 2013.  The day I was going to meet with my group of midwives about inducing, the Lord blessed me with him coming on his own.  You see, I was scared to make a choice regarding his arrival, I had told myself that it wasn't my place to act as God and pick when my baby comes because he would surely die the same day.  I didn't want to be the one to pick the day he left this life.  But what it really came down to, as I have been reminded many times the past few weeks, is I was making a choice that involved no effort on my part, I was picking the easy path purely because I didn't want to make a hard decision.

Finally, after much prayer and tears, I made the decision to schedule an induction.  I poured my heart out to the Lord and He heard my prayers.  I took the knowledge I had about our baby's condition--Potter's Syndrome, poor heart condition. And then made the best decision I could.  We knew the outcome would be the same, our baby wasn't going to live very long, if born alive even.  But I had such a strong desire to meet this little one alive, it was very important to me.


I had started having contractions early early Saturday morning.  They woke me up at about 2-3am.  But I didn't think anything of it, because although they were consistently 5 minutes apart, I could handle them.  They were only slightly uncomfortable but they weren't coming closer together, so I just kinda dozed and tried to ignore them.  They lasted for about 3 hours.  When i realized that these were probably the real thing, I started fighting it.  I wasn't ready to say goodbye to my baby, I wasn't ready to let go.  I wanted this baby so bad, and it took a lot of faith for us to have another after the difficulties we had with Martin. It took a lot of prayer for me that night to help me come to terms emotionally to feel ready for this. So when the contractions stopped, I was actually a bit disappointed.


The same thing occurred the next night, only I had a few painful ones I had to work to breath through. They only lasted a few hours again. Nothing during the day.  Rinse and repeat early Monday morning.  I had convinced myself that these couldn't really be contractions, I had indigestion or something else going on.  Not contractions.  Tuesday morning was a bit of a different story, where they were more painful, I had to stop what I was doing and focus on getting through them.  I still didn't think our baby would be born anytime soon.  I called my parents though, and my mom left right away for the 12 hour drive up here.  We decided to go to the hospital and just check everything.  I was fully expecting to be sent home.  After all, I was able to manage the contractions, and they weren't consistent at all.  While Matt packed things I sat on the couch for 20 minutes and had maybe 2 contractions.  Walking to the car I had 3-4.  They were totally all over the place, which is why I was sure I wasn't in real labor.

An hour and half later at about 11:45am, we arrived at the hospital, after dropping the kids (and dog) off at Matt's parents.  By the time they checked me, which was probably just before noon, I was at a 7 and moving fast.


Kale Link was born at 12:05pm.  Fast enough that they weren't able to hook up ANYTHING to me--no monitors, no IV, no pain meds, nothing.  My midwife barely made it.  She showed up, checked me, confirmed that baby was still breech (after all, with no fluid, it's kinda hard to turn around), and said "whenever you're ready!" Less than a minute later I was holding my baby Kale, who was alive, and even gave me a little tiny cry. He was little, only 3lb 4oz.  After all, he was born at 30 weeks gestation.  But he was perfect.  So perfect looking, it's hard to believe that his insides couldn't be perfect as well.


You may not be able to tell just from reading that, but there are multiple tender mercies from the Lord.  You see, this is what I wanted.  Exactly.  This is what I prayed for.  Exactly, to the letter.  The Lord needed me to make a decision on my own and be firm in my choice.  To not waver.  And then He blessed me with the desires of my heart.  Kale came on his own, I had a natural labor that was fast and probably didn't even have time to stress his heart out like I feared an induction would.  The midwife I wanted to deliver was on call and able to be there for us.  My sweet baby was born alive and stayed with us for almost 40 minutes.  He got to meet his older sister and brother, even if they were indifferent and a little freaked out by everything. And the Lord surprised us by giving us a boy when we thought we were going to have a girl.  But even that is a tender mercy, because the day before I finished making a few baby boy things to go with the baby girl things I had made, just in case.  I surely was prompted to do that.


Paved with tender mercies from the Lord.

Kale was showered with love his whole time on earth, and Matt was able to give him a blessing as per our church, giving him his name.  Kale Link.  He passed into the next life in my arms, for which I was so grateful to be able to be the one holding him, and telling him how much I love him.


Monday, June 24, 2013

Update

I've had people ask how things are going, if there are any changes going on with our baby and our situation.  I wish I could say yes to these people.  I wish I could tell them that magically kidneys showed up and our baby is producing amniotic fluid now.  Or that the heart is pumping properly.  Or any sort of good news.

But I can't.  Mostly because I have no idea, having not had an ultrasound since my Maternal Fetal Medicine appointment.  No one quite understands how badly I wish I could say we've been given a miracle, but that's not going to happen.  I just feel it.

People have also asked what we're doing to do.  Here's what we're going to do.  We've turned the situation over to the Lord.  He is the only one who knows what is best for everyone, who knows our hearts and knows what we need.  He is the only one who can see the end of all things, and sees exactly how this little baby fits perfectly into His plan.  So I've tried my hardest to amp up my faith.  I've tried to push the angry thoughts out of my head when they come.  The "Why me? It's not fair!" thoughts that tear me down.  It's not easy, I've done more than my fair share of complaining.  But at this point, we're letting things play out without intervention on our part.  It's not our place to determine when this baby comes.  I can't even fathom picking the date this baby would die on, as I feel it wiggle inside me, fully alive.  That's too much for a parent to bear.

We're preparing for our sweetheart's arrival--regardless of how it comes.  Our baby could be born still, the heart having given out already (I have a doppler and monitor it, as well as making sure I feel our baby move, what little movement there is).  Or our baby could bless us with a few moments in our arms before passing on.  The outcome will be the same, and we are preparing for it as much as we can.  It's not an easy thing to think about--I can't decide if knowing the end is coming and having a date where it will for sure be here by, or being surprised would be better.  It's a mixed feeling, the pros and cons of each type of situation.

I've been keeping myself busy in the meantime, making mementos and burial clothes/blankets.  Things that I can hold with our angel, and as the years pass pull them back out and remember the time we were blessed with.  Things to help the kids remember their sibling who isn't here with them, to help them deal with it as they need to.  (on that note, our children do not know what is going on--please DO NOT attempt to talk to them about it, this is NOT news that needs to come from anyone but Matt or myself)

And that is how things are going.  They're going.

(PS-I'm now 27 weeks pregnant)

Saturday, May 11, 2013

Introducing

It has been months since I've posted.  MONTHS.  And I'm not even going to try to back up and play catch up.  Too much work.
I'm going to start where I am in life right now, because that's what needs to happen.

First I'd like to introduce you to this sweet baby.  Words can't describe the love we have already towards this baby.



Now I'd like to tell you the things we've learned about this baby the past few days.  And this is where it get rough. This beautiful little one has been diagnosed with Renal Agenesis, also known as Potter's Syndrome.  Ultimately this means our baby cannot survive.  'Incompatible with life' is the term doctors use.  I am currently 21 weeks pregnant.

Renal Agenesis basically means our baby has no kidneys.  No one knows if there were there and then stopped functioning or if they were never there to begin with.  I think they were never there to begin with.  The kidney's serve as a major function in supplying most of the amniotic fluid that surrounds the baby.  Our baby has no fluid whatsoever, because there are no kidney's process it.  Because there is no fluid our baby isn't breathing it in, helping the lungs grow.  The lungs are not developing.  Along with that, the baby is not swallowing fluid.  There is no stomach in our baby because it was unable to develop.  And while the baby will still develop and grow, being supported by the placenta (which is in amazing condition the doctors told me), our baby will still struggle, being so compressed in there without any fluid to cushion movement.  I rarely feel any movement, and have to lay still for a long time and wait patiently to feel any sort of activity.

All that alone is enough for our baby to not be able to live. Lung failure after baby is born because the lungs are severely underdeveloped.  And not just preemie underdeveloped, but like 12week baby underdeveloped.  Just no chance to be able to grow.


Unfortunately, that's not the only thing our poor sweetheart has been given.  The heart in our dear baby is 3-4 times larger than it should be.  It's working MUCH too hard, and as a result (maybe?  We're not sure) isn't pumping and beating properly.  Over a doppler it sounds great, which is why we never had any suspicion that anything would be wrong.  However, on the ultrasound it shows the detail, which is worrisome.

At this point we're not sure when (because it probably is a matter of when) our baby's heart will give out.  When it will eventual wear itself out.

We hope and pray for a chance to meet this baby for a few moments, but ultimately, this baby is too perfect for this world, and will not be around very long, if at all.  Our options are few at this time: 1-induce at anytime. 2-wait until I go into natural labor, which has the risks of our baby already having died, or possibly die during the birth. I have an anterior placenta which limits the csection option, and I've been told (while pregnant with Martin) the way my throat is formed I would most likely have to be completely knocked out for a csection.  Which means if our baby were born alive and lived for a very short time, I might not be awake enough to remember it.  NOT an option. We're praying for guidance to help us make the best decision for our baby and for us.



Yes, our hearts are breaking.  Yes, we cry every day, at almost every thought of our baby.  Yes, I still can't fathom the idea that I will be burying my child, buying a casket instead of a carseat, planning for a funeral instead of a baby shower. It's something I never imagined we'd have to go through.

There are millions of thoughts rolling through my head at any given moment.  Different things about different aspects of this situation.  Every day I thank Matt for marrying me in the temple, so our family can be together forever and we will get a chance to be with our sweet baby in the next life.  I think about how much I can cram into the short precious time we'll have together.  How many memories we can make with our baby. I often rage in my head about why we have to go through this, after all we've already gone through to get Martin here safely. I sob about how I can't let this little one go, that this is a trial I don't think I'll get through.  I pray for a miracle that the kidney's will magically appear and our baby will be just fine.  I feel like this isn't happening to us, it's just a dream I'm going to wake up from.  Random things trigger me, and I've had to walk out of stores trying to control my tears until I get to the safety of my car and can sob alone.

We're trying to make the best of a horrible situation.  There was nothing we could have done to prevent it, and nothing we can do to fix it.  But we can prepare, which many families don't even get the chance to.  It's hard to be grateful for something so sad, but we're grateful for that.  We know any time we're blessed to receive is precious.  We realize how wonderful our two children are even more than before.  But we're grieving.  We're struggling.  We want to crawl into bed and just hide.


We appreciate the love and support from our family and friends right now, we appreciate the emails and messages.  Please understand if it takes us time to respond, or if we don't respond as all.  The gesture means more to us than you realize, it's just a hard thing to respond to.  And please forgive me as I often forget that other people will want to grieve as well.  Part of me just wants to be selfish, and I'm trying to remember that others love this baby too.  

Here are some resources for those who are interested. 

Angelbabiesinfo.org (this is a site put together by a new friend of mine, 
Potterssyndrome.org (information relating to Potter's Syndrome)

Monday, November 12, 2012

Trunk-or-Treat!

Y'know what I love about living in a small town?  Well, there's a lot of things, but I love that we do Trunk-or-Treating as a TOWN.  I know a lot of neighborhoods who do it with their local church, and then they also do regular trick-or-treating around the neighborhood.


Not here.  The street is closed off with our fire truck, the cars are all parked facing the sidewalk, and the kids line up at the corner by the first car.  The fire truck blasts it's sirens and the kids are off!  Down the street, from trunk to trunk, collecting their candy.  


We moved a little slow this year, Martin's little indian loin cloth wouldn't stay on, and his candy bag was a bit big for him.  I bet he could have fit in it...


However, the kids had a blast, the weather was amazing (like 70degrees that day!!) and my favorite part?  Home within half an hour, kid to bed on time, and no one knocking on my door all night.  I love that.

Monday, November 05, 2012

A visit from Cam

A few weeks ago our friend Cam stopped by and stayed with us for a few days.  We were really just a bed for him to crash at on his cross country drive (actually we didn't even have a bed, just a couch).  He's in the Coast Guard and was heading from Boston to California via his parents current state of Georgia.  

While he was here, I took advantage of a hiking buddy and we attempted to find a little kid-friendly hike up a local canyon. We failed miserably.  However, we did find some random campgrounds, a little stream to play in, a bridge and a grave.  




Seriously though, does that NOT look like a dug up grave? Just a little bit??


Cam was trying to teach Katryn how to read this sign.


And every kids dream--a river!  This was about how deep it was all the way across all 10 feet of it.  Perfect for the kids to play in and hop around on the rocks.


Martin liked throwing the rocks in.  Shocker, I know.

Both my kids have a bit of a rock obsession.  Katryn picks up multiple rocks a day for her 'collection' (which is thankfully located outside). and I wash at least 1 rock every time I wash her clothes.  Mostly because i don't think to check her pockets.  Or anyone's pockets for that matter.  I washed Matt's USB drive a while back, and I have washed his work credit card multiple times.

I guess I need to start checking pockets...

Anyway, we had fun visiting with Cam while he was here, and Katryn STILL talks about when Cameron came and visited and the things they're going to do next time he comes and visits her (not us, but her).  {{hint, hint Cam!  Come visit again!!}}