on the boat

Trying to fill my life with good things and feel the spirit of the Lord every day helps me to keep a peaceful perspective about the loss of my son.  Even if it's just brief, I try to read scriptures or words of prophets so that I feel the Lord's hand in my life, and know that he is mindful of me.  Praying brings me peace and comfort, on nights when I struggle to rest, I do feel better when I take time to converse with the Lord about all that is going on, and to thank him for my blessings.  It helps me to remember that there are no accidents with his plan, that he allows bad to happen, but that he has good rewards for all who are faithful.  It helps me to see that there is more beyond what I can see now, and to trust him.

Today, I took a moment to read and watch and think about the moment when Christ calms the storm in Mark 4.  There is an awesome video that captures the moment and the words spoken here, if you want the 2 minute version.

It's not really new for me, I truly enjoy this story.  It's fairly simple and to the point, miraculous, and is told several times in the New Testament.  When I was in college, I posted this picture on my wall with a caption that said something like "Will you let Him calm the storms in your life?"

I wrote a poem that I even began putting to music, entitled "Peace, Be Still".  I have not been brave enough to finish it, or post it.  Not many people know that I write poetry, and I don't write much any more, just for lack of time.  It expresses feelings of pain, doubt, and fear that can be calmed by the Master who can simply utter "Peace, be still".

The point is, I have read this story many times, and I love it, I love all it symbolizes, but today I was struck by three things I never have noticed before.

First, I thought that Christ must have been completely beyond exhausted to sleep through something as crazy as getting rained on and rocked about.  He was still sleeping hard enough that his disciples had to wake him and ask if He cared that they were going to die.  He must have needed the sleep so badly if he was able to sleep through a storm like that until someone woke him.  Then I wondered if perhaps it's because He knew nothing on earth could or would hurt Him until it was time for Him to complete his mission, so things like rocking boats/waves wouldn't even phase him.  I'm sure he was still very tired, he likely had so many things to think about, so many people he worried over, that he rarely got moments where he wasn't thronged like when he was in a boat with his disciples.  But he was confident that he would be just fine, no matter what came his way, until it was his time to finish his work.

Second, I realized that when he asks his disciples about their faith, and why they were so afraid, he is aware that they don't understand why he felt so safe.  They don't realize who he is--they have the son of God on their boat, and he is going to be kept safe until he allows otherwise, so they never had reason to fear.  He is probably a little bit in awe at their lack of ability to understand.  I'm on the boat--why are you scared?!

I am understanding that Christ's calming the waves had nothing to do with a need for physical safety for himself or his disciples and everything to do with caring for his disciples because they were afraid.  None of them were ever in true danger, as long as they were in the boat with the Master.  (I suppose one might have been in danger if they fell out of the boat...)  And as long as I am riding in the boat with the Master, then I have no reason to fear.  

The first night after Gideon was born, when I was trying to recover from some pretty severe hemorrhaging and a nearly 24 hour labor, I knew I needed to rest, but I struggled to sleep.  I didn't know what was to come, what was to happen to my son, and I wanted to have any minutes I could with him.  I was panicking and trying to find a balance between caring for me and caring for him.  I hated being away from him, but I didn't have the strength or energy to go be with him.  My brother in law (whose name Gideon carries as his middle name) gave us some wise counsel that day.  Sleep, you can not push yourself beyond your mortal ability to function and still be able to be helpful to your family.  Do not do more than you can do.  A nurse in the NICU said something similar--she told me she had seen moms keep a 24 hour vigil for the first few nights, and then get really sick and not be able to see their babies at all, because you are not allowed in the NICU if you are sick.  Period.  I felt bad about trying to sleep, and I still sometimes wish I would have slept less and spent more time with my tiny little man, but today, I feel better about it because of this story.

I was so tired, that if I could sleep through the middle of that "storm", I probably needed the sleep.  I had prayed like crazy for time with my baby, and I knew that God was in charge.  I did not know when he would be called home, but I knew that he wouldn't go home unless God called him home.  Also the NICU would call us if things got scary, so that we could come and be there with him (Carest thou not that he perishes?)  It was OK for me to sleep, as God was caring for Gideon during those hours, and I am in His boat.

Crazy stuff is going to happen, I am sure I am going to have to weather more storms and go through more experiences that I will struggle to understand.  As long as I'm in the boat with the Master, though, he will comfort me (even if I'm in no true danger), and help me to understand and grow in faith and understanding of who He is and what His plan is for me.  His boat is the ultimate "life boat", as He helps life be better, more full, more happy, more hopeful for the future.  It's a privilege to be on the boat with the Master.

I have been changed for good

Another theme song post?  You bet!!  There is a beautiful song from the musical "Wicked" called "For Good", which I fell in love with a few years ago.  My late sister in law, Amber, linked the music on her blog, which is beautiful and I still sometimes go back and read her testimony, and feel the growth she made through her battle with cancer, and the power of the love she felt for her family.  This song reminds me of her, and reminds me of the power we all have to make other people's lives better through our example.  Since then, I can't sing it, it makes me cry too much.  I love to sing, but this is one I may never be able to sing again, even more so now.  There are a ton of lines that I can't get through anymore, because they pull too strongly on my heart strings.  If you've never heard it, and aren't familiar with the lyrics, here's a link of the song performed by the original Broadway singers with the lyrics on screen so you can see exactly what's being sung.  For Good: Wicked Idina Menzel and Kristen Chenoweth

Why today?  Well, last night as I prayed, my heart truly burned for the first time as I thanked God for sending Gideon into my life because of the changes it has made in me.  I meant it, and I really felt it, deep down.  I have known I would one day feel gratitude for the experience, but up until last night, I hadn't REALLY felt grateful for it.  I have seen my perspective shift, my faith grow.  Little things that are trivial and unimportant have become more obviously so.  My perspective has broadened, I see people more clearly.  The things that are most important have become much more focused in my life.  As I prayed last night, I realized that I am grateful for the changes in myself that have come because Gideon came into my life.  As I finished praying, some of the phrases from this song burst into my mind.  "I know I'm who I am today because I knew you."  "Because I knew you, I have been changed for good."  "It well may be that we may never meet again in this lifetime...so much of me is made from what I learned from you, you'll be with me like a handprint on my heart."

I have listened to the song several times today, and the beginning struck me in a new and different way. Elphaba (one of the characters) sings about being limited, and how the other will have to go on for both of them.  Truthfully, I don't know whether it's Gideon that's limited because he currently doesn't have a physical body, or if it's me, because I am tied to mine.  Either way, we have work to do that we can each do, and I know that what I do here has been influenced by his life forever.  The priesthood blessing he was given when he was 5 days old still rings true.  "Your life, though short, has no less meaning."  At the time, I wondered how it would be possible that his tiny life would continue to make a difference.  Now, I know.

God knows what I need, he knew what I needed to grow into the person he wants me to become.  (Man, I must have a lot of rough edges to have needed this!!)  I still miss my baby, and it is hard for me to wonder what knowing him will be like, and wishing it could be right now.  I miss all those moments.  It still hurts a lot.  I am growing because of it, though, and am grateful for that growth and the happiness I am finding because of it.  I have been changed for good.

Our little warrior

We nicknamed Gideon "our little warrior" almost instantly.  He was named after several warriors in the scriptures, knowing he would have to fight for his life.  We also concluded that if he was not meant to stay here on earth with us, he was a valiant, spiritual warrior.

Let it be said that it will be very clear from this post that I believe in both an existence before this life and one after it.  If that is something that will make you uncomfortable, this post will probably be uncomfortable, and there is no pressure to continue reading.

I have reasons to believe that Gideon is my own special warrior.

Years ago, before I was married, before I had even met Scott, I lived in Alaska.  (Loved it, what a place!!) On Jan 1 2000, at the tender age of 18, I was injured very badly in a snowmobiling accident.  I was the passenger, we jumped a snowy embankment (going way too fast--I think the driver didn't see it with all the white) and I blacked out the instant we hit the embankment.  I regained consciousness face down in the snow, with the snowmobile on top of my legs.  We were probably at least 40 feet from where we initially hit, and I have no idea how I ended up under the machine.  The entire circumstances are somewhat miraculous--a few of my vertebrae were compressed in the accident, the doctors told me that had they been compressed by a single degree more, I'd have been paralyzed from the waist down.  How did the machine land on my legs--on my cushy calf muscles, so that they wouldn't snap the bones in half?  How did I fly so far one direction and the driver land so far in the other (she was at least 20 feet away from me and the snowmobile), I had to holler to find out if she was OK, because I didn't see her at first, she was not in close proximity.  With a prayer, she had enough strength to lift the snowmobile enough for me to get my legs out from underneath it.  (Before the prayer, my legs were aching fiercely and I asked her to try to move it, and she was unsuccessful.)  And at the closest cabin, there just happened to be an EMT from the Anchorage Fire Department, who was able to do an initial check on me, get me laying down, and go for help with the driver (who was uninjured other than a few scratches and a torn coat).  I was given a priesthood blessing where I was promised both a quick and full recovery (no small feat when it's a serious back injury).

I remember thinking about those moments, the miracles of that accident, and how later that day, I had a dawning realization that I was kept alive so that I could become a wife and mother.  God had something special for me to experience in life that I needed to stick around for.  I felt that my own children (I don't know how many of them) were there that day, making sure that I was "intact" so that I could one day do what I was called to do--to be their mother.

That same year, I was in several other accidents.  Earlier in the winter, I was in a car accident.  My car was totalled, the other car was fine.  The SAME day as the snowmobiling accident, on the way to the snowmobiling activity, in fact, we hit a patch of black ice, and spun out of control across the center lane (yes into the lane where oncoming traffic was).  Right in the middle of the spin, we suddenly switched directions, spun back off onto our own side of the road, and off the side.  We drove away unharmed, and the truck we were in was fine.  (Had to put it into 4WD to get off the side of the road, but we were fine.)  Later that spring, I was driving and hydroplaned and spun off the road.  I was fine, the vehicle ended up getting a flat tire from when I spun off the road, but that was it.  That year was a year of things that could have killed me, and for some reason, they didn't.  I suspected VERY strongly after that year that there were forces beyond my ability to see--some of which wanted me destroyed and others which hoped to keep me safe.

Before I had even taken a pregnancy test with Gideon's pregnancy, before I had any reason to suspect that I was expecting, I woke one night hearing a voice saying "Mommy, I'm coming."  I quite strongly suspected that I was pregnant, and that I was going to have a very special baby.  In some ways, it scared me more as we began to see the problems with his body, because I wondered if this baby wasn't just too special to stay here on earth--too good to be tried by the problems, sadnesses, and trials we all experience here.  (And indeed, he was.)  I wondered, when pregnant, if this special child with the ability to let me know he was on his way was also special enough to guard and watch over me in the moments when I was in danger.  I have felt like it is pretty likely he was present that day when I got in a snowmobile accident, keeping me safe.

His calling to be the guardian angel of our family seems to have been important enough that we only got the brief chance to meet him in this life, before he was called back.

Last Sunday, our oldest child was given a blessing ordaining him to become a Deacon in the Aaronic (preparatory) priesthood.  He will have responsibilities and expectations, as well as potentially having special spiritual blessings from living up to the responsibilities and expectations.  When Ethan was being ordained and receiving his blessing, I felt strongly that our guardian angel was there, that he came to experience this special moment in our family's growth.  It would have been a special moment for me anyway, but now it was an even more sacred moment--though I wish I had the opportunity to get to know Gideon better here and now, I am grateful that he is still part of our family, and that I could feel him there during that special moment.  He is still watching out for us.

If anything, this has strengthened my testimony that the people who have gone before us, and quite possibly also those who are waiting to come yet, care about us.  They want us to succeed, to do right, to be our best selves.  They can't interfere in everything--we have choices which have natural consequences, other people have choices which have consequences that will affect us, those things can not always be tampered with, but I believe that our "angels and warriors" help where they can.  I believe they pray for us, they hope for us, they want us to endure and to overcome weaknesses.  I believe they are there for us in the moments when we feel so alone (even Jesus was sent an angel to comfort him in some of his alone time in the Garden of Gethsemane).

I am grateful for the privilege of meeting at least one of my warriors, and for the privilege of knowing he is there to watch over our family.  I am grateful that our family was blessed to have the chance to meet him in person.

Q and A: details about Gideon's life and death and my grief

I have realized that perhaps I have not done the best job explaining what happened with Gideon.  I am no doctor, and obviously I do not have all the answers, but I can sure try to help anyone who cares to understand a little more.  I have had a few friends (and some of my children's friends) ask me different questions about the pictures in our house, and also about what happened.  The week + I spent in the hospital talking to the staff in the NICU and the doctors at U of U, I learned an AWFUL lot of medical stuff I never knew before, and I will try to share.  Please don't be alarmed if you feel like you are drinking out of a fire hose.  That's how I felt every day from July 22nd until August 1st when Gideon passed away, as doctors, nurses, and interns did their best to explain things to me.  I'll start simple though.

Here is a picture we have up in our house that I have NOT put on the web before. I love it, because you can see a little bit more of a personality in this baby.  His little finger by his mouth...I just love it.  He also has less (I know this already looks like a lot) tubes and pipes coming out of him than later in the week after his other surgeries at Primary Children's.  It has sparked a few questions from my children's friends.  "Is that Hyrum when he was a baby?"  "Who is that baby?"  "What happened to that baby?"  "Why does he have that thing on his nose?"

It's one of the earliest pictures we have of him, this is still in the NICU at the University of Utah hospital, before he was transferred to Primary Children's.  You can see that the blood around his umbilical cord stump is still relatively fresh, and they were able to insert some lines straight up through it, to avoid poking him QUITE so many times.  My kids aren't a fan of the bloody umbilical cord area, but I don't care, I just love seeing his little hand by his mouth.

The ANSWERS to those questions in "answering children" format.  This is Gideon, he is the baby I had last summer.  He was born after Hyrum, and he had some problems with his body.  He is not here in our house, because he died and is in heaven.  "Why does he have that thing on his nose?" He was born so early, his lungs were not ready to breathe by themselves..  And because of his big kidneys, his lungs were even less developed than a normal 28 week old baby would have been, so there was no way he could breathe on his own.  The tape is to hold in the tube in his mouth, to help his tiny lungs to breathe.

Of course, in response to answers I gave, many children ask the follow up question that I can't really answer sufficiently.  "WHY?"  I have no answer for that.  Truly, that is the heart stopping question, because I don't really know why.  I can answer it in my heart with "That was God's plan for our family and Gideon" and I truly believe that, but it isn't typically a good enough answer for a child, and some days, it doesn't really feel like a good enough answer to me either.  I still wonder why this is what we were called to bear.

The BIGGER more medical questions, and more personal questions may yield some repetetive answers. This is a very long post, because there is a lot of information I haven't really taken the time to put out there yet.  And a lot of it goes into medical stuff which can be overwhelming, which is why I haven't taken the time to put it out there.

"What was wrong with his body?" and "Did you know about this earlier in your pregnancy?"  "Did they know it was going turn out this way?"  This is a long answer, and I will do my best as a non-doctor to answer it fully without being TOO detailed.  At 20 weeks, when they showed us he was a boy, they detected that the "pipe" that leads from his kidneys to his bladder was obstructed--partially blocked.  (Called a UPJ obstruction, if you want to read up on it, this article covers the bases pretty well, and you can see that it isn't really supposed to be life threatening  UPJ obstruction in fetus.)  They could tell because his kidneys were a bit larger than normal.  His bladder still had fluid, and he still had amniotic fluid, so it was not an emergency, just something to keep an eye on.  It is actually more common than I realized, and I had several people reach out to me who had similar things detected in their babies in ultrasounds and/or at birth, who now have healthy children.  I read up on it, it sounded like if the problem continued, he'd possibly need a surgery after he was born.  For some people I know, the problem corrected itself as the baby grew, for others, it required surgery after baby was born, and then the child was fine.  For us though, the problem progressed, rather than stabilizing or going away.  As we continued to monitor the situation with ultrasounds every other week, the problem stayed the same for a few weeks, and then took a dramatic turn for the worse.  At the last few ultrasounds, his kidneys were larger and larger, and his bladder was less and less full.  The doctors had a much more worried look about them, and my OBGYN who ultrasounded me about a week and a half before Gideon was born said he had never seen hydronephrosis (liquid build up in the kidneys) so bad in a fetus before.  He even left to go call another doctor to make sure they didn't want to check me in and take a better look THAT DAY.  They checked for amniotic fluid (if there is none, the baby is in DANGER!!!), but there was still some, and so I was good to wait until the next week for my next appointment.  (Which turned out to be a really good thing, because my brother got married days later, and then just days after his wedding, I was admitted to the hospital.  I was able to be at the wedding and at the time did NOT know that Gideon's condition would be fatal, so I enjoyed the wedding and the family time much more than if I'd known.)

"Did the doctors know and did you know that his condition was this dangerous?"  It wasn't until the day I was admitted to the U of U that Scott and I got the news that his condition was potentially lethal.  I think the doctors might have known it was "THAT BAD" when they set up my transfer of doctors/appointments to the U of U, just a week prior, because they had set up back to back appointments for ultrasound first, then to genetic counselling, then to meet my new OBGYN.  If they hadn't realized it was so bad, we wouldn't have already had an appointment with genetic counselling ready to go.  It was a slam of bad news all in one day, and the genetic counselors are the ones who get to do the dirty work of delivering it all.  I don't know why anyone would want that as a career, honestly  They told us his condition was possibly lethal. They also told us that sometimes, families who have one baby with a UPJ obstruction have more--it is possibly a genetic condition.  The final ultrasound they did (when they decided to admit me and try to deliver to see if there was a possibility to save his life by draining his kidneys) his kidneys were huge, his bladder was empty and he had no amniotic fluid.  

Why did they take him at 28 weeks?  Babies can't develop without amniotic fluid, his lung growth had hit a point where it had completely halted, his kidneys were still producing urine that could not drain, and once there is no more fluid, the chances of the placenta just rupturing are much higher.  I was not in any danger, but he would most likely have died and been born stillborn.  As it was, because his kidneys were so large, his lungs were drastically underdeveloped (his kidneys were hogging all the room), even for a baby his age. 

Q: Were you (referring to me) in any danger?  Not that I was made aware of.  Everything we did was to save Gideon's life.  And as it was, I am glad they tried, because we had a week with him where we could see and touch him and make eye contact, and we wouldn't have gotten that week if they hadn't tried what they did when they did. 

Some people have wondered if we knew that his chances of surviving were so small.  No, not really.  We were pretty blindsided by the whole thing, it was a week full of shock after shock.  The doctors only told us when I was admitted before we delivered him that it was possible this could be fatal.  Up until then, we were optimistic that this would be a UPJ obstruction like the others we had heard about.  We hadn't chosen his name, we had NO idea I was going to be admitted and then delivering this baby when I went up to U of U that day.  We just knew we were going to be meeting with some specialists, and that they would take over my care for the duration of the pregnancy/delivery so that we'd be close to Primary Children's Hospital and specialty doctors.  We didn't know why they were having us meet with genetic counselors, (but if you are ever given an appointment with them--expect it to be NOT FUN.)  Up until then, we all hoped that once they drained his kidneys, they would not be too badly damaged, and that he would be able to keep growing and developing in the NICU as a semi normal baby, until he was old enough, strong enough, and stable enough to have a surgery to fix the UPJ obstruction.  We learned that most babies born at 28 weeks have a 90% chance of surviving and that 90% of those have no permanent damage.  That is 90% of NORMALLY developing babies, though.  Our baby had severely underdeveloped lungs as well as possible damage to his kidneys.  It did not look like his chances of surviving were anywhere near 90%, but we were still hopeful.  

Some people had heard of the steroid shots they give to mothers who are delivering a baby early, to give the baby's lungs a boost.  Did they give me the shots?  Yes.  After they admitted me on the 22nd, they gave me the steroid shots to help his lungs develop,  they are a 48 hour process--you get 1 in 1 hip that gets to stay there for 24 hours, and then another shot in the other side and it needs 24 hours to have its full effect.  They monitored him every few hours, to make sure he was still hanging in there.  At the suggestion of a dear friend, I took an audio recording of his heartbeat--which I still listen to and treasure.  They did not actually induce labor until the evening of the 24th, after the steroids had had a full 48 hours to do their thing.   

Did they try surgery?  Yes, but he was too tiny to have a normal UPJ type surgery where they open you up and connect the ureter to the renal pelvis/kidney/bladder, so they just drained his kidneys, and inserted nephrostomy tubes.  (Bypassing the need for a ureter/bladder completely, his kidneys drained straight into the tiny bags at his sides.)  We were hopeful, his lungs started expanding, he lived through the surgery to drain his kidneys and bypass them, even though he was so fragile.  Over the few following days, it was a "watch and see" type thing, and the results were not good.  His kidneys weren't really functioning, they weren't filtering the fluids in his blood effectively--the levels of "bad stuff" in his blood were going up every day, and his kidneys were filling back up, despite the drainage system that was in place.  His lungs were so tiny and fragile that they began to show signs of damage from being used.  They couldn't adjust the ventilator to balance his ability to keep oxygenated and also not damage his lungs that were so very small.  It just didn't look good, he was dying, really.

I have been asked if I miss him.  Yep.  This seems like a silly question--it is typically posed to me by young teens.  It has been asked as a sincere question, and I don't feel angry that it was asked.  Yes, I miss him.  Sometimes more than others.  

I have been asked if the condition is genetic.  That's unclear, but there is evidence to suggest that it might be.  No guarantees one way or the other, but there is an increased chance that we could have more kids with the same UPJ obstruction.  It was a difficult decision to proceed with more children, but we both felt strongly that we were still to have more.  Honestly, after I came home from the hospital after Gideon passed away, I wanted to get rid of all the baby stuff, because I never wanted to go through losing a child again.  Scott talked me out of it, knowing that I have a mother heart, and I have always wanted a big family.  I am glad he did, even though I am still scared that this baby could have problems.  My doctor will be watching closely.  I will likely be in bad shape if we ever see too much fluid in his/her kidneys, though I will try to be optimistic as I can.  

A good friend of mine asked me if it is still as hard now as it was right after he passed away.  I don't think it is as hard as often, but the times when it is hard are still just as hard as before.  I think it's maybe a little like adjusting to wearing a wedding ring.  At first, it's so obvious it's there--it's shiny, I kept scratching myself on it, it felt heavier than normal.  But after a while, I got used to it.  I still look down at my hand and love the way it looks, I still sometimes get scratched by it, but I am used to it's weight and have adjusted now.  The super difficult moments of missing him so badly I am almost thrust into tears don't happen quite so frequently as when he had just passed away.  I still think of him daily, but I don't always ache for him like I did at first.  We have gotten used to the "new normal" where we have a little bit of an empty spot in our hearts and in our home, and we are more used to it than at first when it was so very noticeable. 

Another good friend of mine asked me some questions about how to be a good friend to me.  Are there things my friends are doing now that they should stop?  No, not my friends.  I have a fantastic support network.  As a general rule though, people should stop is making judgement calls about other people's grief, but I don't feel like any of my friends have done this.  Grief is not on a timeline, and everyone deals with grief in different ways.  People need to be more understanding of this, to find ways to understand and support each other instead of thinking "well, that's weird" or "He/she should be over it by now."  I have not felt that any of my friends have done this, but it is a common thing in our world, and it really shouldn't be.

Is there anything my friends are not already doing that they should start doing?  This is a tricky one.  There's a part of me that would love people to still sometimes bring meals and/or help clean my house, but I think that's really more of my pregnant, tired self talking, not my Gideon missing self.  And I don't really think it's a need, so much as just a fun/nice thing to do and receive.   The real answer, and the honest to goodness truth is, if you feel prompted to do something, you should probably do it.  Not just for me, but for anyone.   Our grief goes up and down, there are harder days and easier ones.  People have been so wonderful to reach out to us, even after all these months, I still will have someone send me a card to let me know they are thinking of me, or bring me a treat, or just shoot me a quick message to tell me they love me and hope I am finding happiness in life.  People will squeeze my hand as they ask "How are you?" and I can tell it's a question they really want a true answer to, not just a "Hey how are ya?" that we ask in passing.   It's wonderful and awesome, and usually those things happen when I need them.  People are being sensitive to the direction of their hearts and the Holy Ghost, and following those promptings to be kind, and I love it.  I think ladies have a gift for that more than men, and I wish Scott could be a receiver as much as I have been.   Though, a good friend of his dropped by randomly one day in December with a loaf of banana bread and to let us know that their family was still praying for us, and I am pretty sure it meant a whole lot to him, and it meant a lot to me to have him let us know that even months later, they were still praying for our happiness, and that he came in person to let us know that he had our backs.

One of the best things a good friend can do is listen when I need, and also understand if I'm not wanting to talk about it.  My blog is a fabulous way for me to balance this, because I can open up when I need/want, and people can go read it if they want to, when they are ready.  I LOVE when my friends and family read my blog, it is a way for me to keep Gideon alive, to make his life have more meaning, to touch hearts that he never had the chance to meet personally.  His life was so short, and I remember wondering (when we knew he was dying) if a life that short could have enough meaning--what was the point of him coming into the world at all for just such a brief time?  All the doctor's efforts, all my efforts of being sick and eating healthy and going to the hospital and having shots, they felt like a waste when I first learned he was not going to make it.   I am pretty sure I even cried aloud "Was this all for nothing?" in a frustrated, upset, angry voice when the doctors first came in (20 minutes after Gideon had been taken to the NICU and they hadn't been able to get him stable yet, and weren't sure they would be able to.)  Through priesthood blessings and the Holy Ghost, I have a firm knowledge that his life, though short, had no less meaning.  I feel like our family needed this.  I don't know why.  I won't for a long time, but I know that God knows why, and I'll be grateful for his loving kindness and wisdom one day when I am able to see all he sees.

What makes you miss him?  Random things, but especially moments I wish I could share with him.  Reading with my kids when we are all snuggled on a couch.  Singing and dancing to songs in the family room.  Sunsets.  On the day I started this post, I was watching the snow fall outside and wondered how he would react to the touch of snowflakes on his skin.  I don't always know when those moments are going to pop up, and especially now that I am pregnant, they seem to be accompanied by quite a bit of emotion.  I wish I could see his face and hold him, I wish I could watch him learn and grow, I wish I could be watching him learn to reach out, and roll and crawl and take steps, as I watch my nieces and nephews doing.  

Why did you choose that name?  I think everybody gives their children names with special meaning.  His first name was not initially a name we considered for our son, but we had talked about Gideon in the bible in Sunday School, during the pregnancy, and I remember it sticking out to me as a really good warrior name.  I also looked up and found an awesome Gideon in the Book of Mormon, and they were both stalwart warriors of truth and righteousness, who loved their God and their people.  When we were made aware of the size of our baby's battle (on the day I was admitted to the hospital) we felt he needed a warrior name, whether his battles were to be here in this life, or whether he was to go home and serve God in heaven, we knew he was a strong spirit.  His middle name is after Scott's oldest brother, who came and talked with us at the hospital.  His first wife passed away from cancer a few years ago, and he gave us some marvelous perspective on doing what you can, but not beating ourselves up for not overdoing it, on accepting loss, on accepting our human weaknesses and not pushing ourselves beyond our capacity to handle.  His perspective was so timely, he knew he needed to be there that day, and we are grateful he followed the promptings to come and give us that support.  He was there for our family in a way that only someone who has lost a close loved one could be, and we both were so touched by his words, and his knowing that we needed them.  And he's an all around good guy too, with a great family.

Is it harder for me to deal with his loss because he was part of a group of babies born in the Chase family, and I get to see them all grow up?  Yes, in some ways it is.  In some ways, though, it connects me to him, I can see that he might be rolling, he might be eating solids, he might be taking his first steps, and though the reminders of his loss are painful, the reminder that he is part of our family is helpful.  I sometimes feel a little left out, but I know I will have time with him again, and they help me remember him.  So I like that my nieces and nephews remind me of him, I just wish it didn't hurt sometimes...

My least favorite question during the whole experience?  I'd say it's any INSINCERE question.  For example "How are you?" (when you really don't want to know) or "Is there anything I can do to help you?" (when you truly hope I'll say "No")  There were even a few "grief counselors" at the hospital who didn't seem very sincere, and they were more annoying than helpful during the time we were there.  In general, this whole experience has been one where I have come to appreciate sincerity.  I even appreciated friends telling me "I didn't know what to say to you, so I just haven't really said much to you for a while."  Or "There really aren't words for this, but I'm sorry."   Thanks for being honest.  I'd rather someone not ask than have someone ask me or tell me something without sincerity.

I don't really understand why people think the world of me.   Simply: I LOVE my family, and I love my friends, I love my Jesus, and I love that my faith has helped me through this and other hard times in my life.  I want to share that faith and the love I have felt because I hope it will help other people, and make Gideon's little life continue to have far reaching effects.  The miracle of his life has changed my life forever, and I am a better person because of it--if I can ripple that effect, can help 10 people be better and love deeper, and they can each help 10, and they can help 10, it will be like pay it forward, the ULTIMATE EDITION!!  I want to make the world a better place, and I know Gideon has helped me to love more deeply and appreciate the things of eternity in a way that I couldn't have before.  I feel like most of my friends have the same goals as I do, and are also incredibly amazing people: they want to make the world a better place, they love their friends and family and want to help them be their best.  I am blessed to have such a support system. 

If you took the time to read through this entire post--hats off to you!  Thanks for being a good friend and listening when I wanted to talk about it.



Showing love in ways that last

It's funny, I still feel like I am learning so much from the week our family had with Gideon.  I spent almost 29 weeks with him, if you count the pregnancy too, but the one week we had where he was on the outside of my body, with the ability to see him and sometimes hold him was different.  Over the last weeks as Valentines Day has come and gone and as there has been so much hype about the movie 50 Shades of Grey that just came out, I have spent a lot of time thinking about love.  I have pondered on the moments when I have felt the most loved, the moments when I have felt like I have shown the most love, and on true ways of expressing love to people.

As the years have gone on, I have become less and less a fan of Valentines Day.  People who don't have a "special someone" tend to feel lonely, girls get their hopes up of a "secret admirer" sending them something that day, parents are expected to buy/bring in little cards and/or treats for all the people in their kid's classes, and there is so much pressure to buy a diamond or flowers or chocolates and to go out to a fancy meal.  Perhaps some of my "dislike" is my very frugal nature, and spending money just isn't a way to show lasting love, in my opinion.  I do not like the idea of going into debt, and spending more money than is wise, and since we have chosen to have a big family, (yes--chosen, we are very aware of the choices we make to have more children) and for me to work only part time from home, we keep things on a tight budget.  We have fun, we love life, but we don't spend a lot of money on "frills".  Especially in the U.S., it seems to me that we have become such a society of consumers, we have wholeheartedly bought into the "buying" traditions, the present or candy or costume or jewelry or (fill in the blank)______ buying traditions, and it's gotten to a level of insanity that leaves a very sour taste in my mouth.  Christmas bothers me for the same reason--yes, it's a time to celebrate the greatest gift, and to spend with family, and to give, but true gifts should come from our hearts.

Valentines Day is a great day to show people you love them, but I don't love the idea that it has to be with expensive gifts, or with gifts that cost any money at all.  For the last few years, I forbid my husband from spending $ on Valentines Day, and didn't buy him any gifts with $ either.  We have saved going out to a nice dinner for another weekend, one when the restaurants are not so jam packed with people.  (I'll admit it, the first year I did this, he was nervous that it might bite him in the butt later on--when months down the road I was having a bad day and threw out the "You didn't even get me anything for Valentines Day" line, especially if I blurted it out in front of his sisters, but I never have said that, and I never will.)  It's not that we treat the day like any other day, we still make it special, just not with spending $ on stuff.  I love that the day is set aside as a special reminder of sharing our love, we still find sweet ways to express our love to each other and to our children.

In my diverse and wandering thoughts about showing love in ways that last, I have thought about Gideon's last day many times.  We knew, ahead of time, that his body was shutting down.  The machines were barely managing to keep him alive, and even then, there had been several very touch and go moments, when we almost lost him.  His kidneys had no function, his body was filling back up with fluid, he was a dying child.  The awesome staff at Primary Children's Hospital had arranged for us to have Gideon moved to a larger room for his last day, so that all of our family could be there together.  (In PCH's normal NICU setting, they have tons of incubators and equipment all together and there is really not a lot of sitting/standing room, so they limit a patient's visitors to 2.)  We wanted to celebrate the miracle that he had lived a week by singing Happy Birthday and doing some special things to show Gideon and our children that we loved them, but we couldn't really give Gideon any stuff he would take with him.  Normally, a birthday involves presents--stuff giving, but we didn't really have that as an option.  So we improvised and it became one of the most special, loving, wonderful and hard days of my life.

We sang together.  Because his oxygen saturation improved every time we sang, we believe that he loved music, we found a common joy and we shared it.  We sang several of our children's favorite songs, all together, so he could hear them before he left this mortal life.  I have those beautiful songs to hold onto, to sing over and over.  Give Said the Little Stream will never be the same again.  The amazing musical therapists came in and talked with us about things we loved about Gideon, things we wished we could help him know, and they wrote a lullaby which we sang to him.  They also recorded it and gave it to us to keep, so we have it to listen to and remember.  That song is a gift I will treasure always, it gave to all of us a way to show him we love him, and a way for us to remember his life, and the things that matter most.

We read a story.  I love books, and have tried to pass that love on to all of my children.  I wanted it to be new, a book that none of us had ever read or heard of before, so that it was as fresh for any of the rest of us as it was for Gideon.  There was a silly book that had a dragon in it, and since all the kids love dragons, we talked to Gideon about dragons and I read ALL 5 of my children the book.  I wanted him to hear the sound of my voice, the giggles of his siblings as we read, the time with all of us.  That gift gives back to me, as I can hold onto the memory of reading it to all of my kids.

We said a family prayer.  My faith has helped me immensely through the journey, and praying as a family has helped all of us to cope, and to trust in whatever God has planned for us.  I wanted Gideon to be a part of that, and on that day, when we were able to be together, he was.

We held him.  Once they moved him safely into the family room, he spent the day in the arms of people who loved him.  I had to take breaks to pump and to go to the bathroom, but my husband, children, and other family visitors took turns to hold him, so that he could spend the day in physical contact with people who loved him, and who would remember him.

That day, more than any other day of his life, he opened his eyes and made eye contact with us several times. Up until his last day, I thought I would not get to see his eyes open, but I did.  It was a gift he gave me, being able to look into his eyes.  More than ever now, I am aware that looking into someone's eyes, making real eye contact and telling them you love them is a huge treasure.  Watching how heavy his eyelids seemed to be, I could tell it took immense amounts of energy for him to open and hold his eyes open for even just 5 seconds, but he did several times that morning.  That is one of my favorite expressions of love from him, and eye contact has moved up the ranks of ways to truly show love in my book.

I talked to him about things I wanted to do with him, about things I knew would have to wait until he was resurrected with a whole, strong body, but I made plans with him and set goals and told him about things I was excited to share with him.  Sharing plans and dreams with someone is a great way to open yourself to them, and to show them that you love them and trust them with your heart.

And I did love him with my heart.  Loving someone does open you up to heartache and heartbreak, but LOVE them anyway.  It might have been easier to cope with the loss if I didn't want and love this child so much, but I did, and so it hurt and it still hurts, and it probably always will.

Since Gideon's passing, I have had many moments where I have needed and have felt very loved through the actions and kindnesses of other people.  People have said kind words, have reached out and squeezed my hand, have given me a hug, have brought me plants to put in our garden in Gideon's memory (I love plants) and they will come back each year.  Sometimes, people have said nothing at all, just brought a meal, asked if there was anything they could do (and meant it), have come and helped clean.  Scott and I have shed tears together, and there is something amazing and powerful about someone who will cry with you, even when there are no words to say to make something better.  I have felt and seen love expressed in ways that involve many hours of time, but very little $, and I have felt more loved than with any expensive gifts.

Loving Gideon has helped me to remember and realize that there are some ways of expressing love that you CAN take with you.    Giving people your time--I still wish I would have spent MORE time at the hospital with him, because time was one of the things I didn't realize how little we would have with him.  The time I did spend, though, he got to take with him in memories and feelings.  Tender and loving physical contact, true and deeply connecting eye contact, telling someone why you love them and things that you treasure about them, opening yourself up and talking about dreams and goals, sharing common interests and joys, and sharing hobbies and activities that one or the other loves, even if it's not mutually enjoyed, sharing expressions of faith, making new memories together, truly living in the moment and feeling that life is a blessing when you are with those you love.  THOSE are the things Gideon got to take with him, and the things that I love the most about the last day of his life.  The things you can take with you--they are real, true, and deep.  THOSE are the things I want for on Christmas, on Valentines Day, on any day really, but especially those days that are meant to be days full of love.

Need a theme song (or two or three)

Let it first be said that I love musicals, and I love music.  I love it when people spontaneously burst into song and dance, and it's something I apply regularly in my own life.  Ask my husband or kids, I truly start singing in random times and places--making up new words to things, and throwing in random dance steps.  I modify words to fit our situation, and find songs that can apply to lots of moments that we have every day.  Sometimes, I am also amazed at the effect a song can have on a moment,  increasing confidence in a character, expressing sadness, on helping someone to arrive at a conclusion, or on just lifting the general mood.  Music is full of emotion and memory, and it often calls attention to important but sometimes subtle things.

Many emotions and memories swirl through me lately.  I am afraid and excited.  I am sick and tired.  I am anxious but trusting and hopeful.  I miss my little baby.  And I am trying to remember that the future is not mine to see, and to just roll forward with whatever happens.  Whatever will be, will be.

I am pregnant again.

Our next baby is due Sept 9.  I am excited to be expecting.  When we met with the genetic counselors prior to Gideon's birth, they told us that having more children presented a real possibility of the same problems again, and asked if we were interested in permanent birth control.  I am considered "high risk".  We looked at each other and then told the doctors that we weren't.  Both of us felt strongly that it was not time for us to be done trying to have more children, even if it means another hard journey for us.   And we are already at the beginning of that journey.  I sometimes wonder how it felt to be Christopher Columbus or Neil Armstrong, or any other explorer who crossed unknown horizons in search of a land they hoped they would reach.  I feel a little more sympathetic for them now: I am eager to see what will happen, what we will inevitably discover on this journey, but nervous that it might not turn out how I hope.  I feel like I need a theme song, though, to help me on this journey.  Perhaps the main title to "Robin Hood: Prince of Thieves" would do (they now use it at the beginning of most Disney DVDs).  Very adventurous, and chock full of emotion.  Plus I had the opportunity to REALLY get to know this piece in high school, when we learned it in band.  I loved it then, still do, and it truly is an "epic adventure" theme, which is how my life feels lately. 

(cue the mood music here:  Robin Hood: Prince of Thieves main theme)

I am not happy to be back to puking again, to feeling exhausted.  I am sick and tired of feeling sick and tired.  I just did this a year ago, and here I am doing it again.  I would NOT have been pregnant if I still had a Gideon and sometimes that makes me miss him all over again even more.  I now have the physical agitations of pregnancy to remind me of all I did for him a year ago, and he's not here with me.  It is scary to think that I might be performing this sacrifice for a baby I might not get to have around for very long again.  I am far more aware that I am opening my heart to a world of heartbreak, as I love this child through the nausea and tiredness, and hope for the very best.  I am trying to enjoy whatever time I get with this baby, no matter what happens.  I am looking forward to an ultrasound on Wednesday, and hoping to hear a strong and healthy heartbeat.

Hyrum told me, a few days ago, as I was brushing my hair that I looked beautiful.  (I think he was trying to get me to just hurry up and finish, but I was grateful for the compliment anyway.)  Then a few minutes later, I "tossed my cookies" into the toilet and he said: "Mom, your barf is not beautiful."  Well said, son.

When I was a teenager, one of my parents (I don't remember for sure, I think it was my dad) introduced me to the song "Que Sera!"  I thought it was a little bit silly then, it seemed too "flibberty gibbet" and careless.  Now, though, it runs through my mind quite often, and I like it more each day.  I am trying to not stress too much about what will happen.  (Key word: trying.)  We won't know anything for several more weeks, and until we can confirm that this baby does or does not have similar issues, I'm not going to freak out about the "what if".  I am trying to have the best "Que sera!" attitude that I can.  If you haven't heard it, here's Doris Day for ya: Doris Day- Que Sera Sera with lyrics

We found out I was expecting just shortly after Christmas.  Truly, it felt like a late Christmas present from Gideon, he knows how much I have missed holding my own baby.  And I know he's up in heaven with the next spirit to come, and that will make the new baby that much more precious to me. and all the harder to lose if we have similar problems with it.

I have asked for more prayers in the last year than ever before, but prayers do help.  Miracles happen every day, our family has seen them, and are witness to the power of faith and prayer.  If you would like to add your prayers to ours, we would appreciate it.

I suspect that like the great explorers, there will be times when I don't know what's coming, when I can't see the end of the journey clearly, when I will wonder why I set out on this voyage and if I'm just endangering myself needlessly.  I will have times when I doubt the wisdom of such a journey.  There are already moments (and I expect more to come) when I connect with my adventure, I feel the depth of its purpose and the vastness of this mission, and I am excited for the results.  I truly believe that there will be great rewards and great discoveries made along the journey and at the end, we will grow and learn from what we will see.

Life with gloves on

Normally I blog about Gideon, the things we have learned from his loss and the joy we find in our family.  Today, though, I want to focus on my 9 year old, and the joys and struggles that come with being his mother.

This boy has the most tender heart of all my children, he had the hardest time with the loss our baby.  Of any of my children, he is the one who is most likely to tear up when I talk about Gideon.  And to make it worse, Gideon passed away 2 days before his birthday, so he will always remember his baby brother's life as he celebrates his own.  He has said to me several times that if he could have traded places with Gideon, he would have, since he had the chance to experience more life than Gideon had.  He has a sensitivity to spiritual matters that my other children do not have, at least not yet.  He is a deep child.  He also has a learning disability.

Picture this in your mind.  At Christmas time, my husband's family plays this really fun game.  We call it the garbage can game, even though you do not have to use a garbage can for it.  There are lots of little fun presents wrapped in layers of newspaper.  ($1 items, like markers, make up, treats, books, etc that the kids can enjoy themselves or trade with each other.)  There is also a lot of extra newspaper wadded and crumpled.  The (clean) garbage can is filled with all the newspaper and newspaper wrapped gifts, and then the kids roll dice for turns to try to open presents from the garbage can.  When someone rolls doubles, they get a turn until the next person rolls doubles.  AND they have to wear big thick gloves to unwrap presents.  It is loud and fun and hectic.  We have learned over the years that it takes too long for anyone preschool age or younger to get the gloves on & off and still have any semblance of hand function, so they don't usually have to wear the gloves.  If your present isn't unwrapped before the next person rolls doubles, it goes back into the garbage can for the next person.  It is amazing how much harder it is to unwrap presents with those gloves on, especially if they were wrapped tightly and/or with lots of tape.

Learning for J is a lot like unwrapping presents with gloves on.  It can be done, but it takes more work, more time, and is more frustrating than for people that don't have "gloves on" AKA a learning disability.  I noticed how much more difficult it was to teach him his numbers and letters before kindergarten.  My oldest knew all his letters all his numbers and was ready to read right at the start of kindergarten.  Not J.  He knew most of his letters and about half his numbers, and we had to WORK and fight and cry and sing and play to get those all learned.  And his learning journey continues to be extra hard work as he progresses.  Each new year and each teacher brings new challenges and new gifts for him to get through.

The reason for bringing this up today is that he had a particularly rough morning, struggling to see beyond the problems of the moment.  He has been tested by the school system as well as by a child psychologist.  The school system results point to autism.  His psychologist says he has ADHD, anxiety, and a rare form of learning disability called "slow cognitive tempo".  His executive functioning skills are way behind where they should be--his ability to plan and prepare, to override and tune out distractions, to problem solve are all severely impaired.  And it takes him 20-30 times more repetition than many children to memorize things.  And that's not an exaggerated figure.

I took a class called Human Exceptionality in spring of 2014, which introduces educators to children with special needs or children who are particularly gifted, giving an overview of many different categories of disabilities, and explaining approaches to helping children overcome some of the special needs they have.  As his mother, it was probably one of the best things I have ever done.  I learned so much about all children with special needs, but I also was able to talk to other people (who will be teachers) about what it was really like as a MOM of a child with special needs.  My professor had taught special education for years, and had such a wonderful attitude about kids with special needs, so many suggestions and philosophies.  I felt more sympathy for my son, and more understanding as I went through some of the exercises our teacher gave us.  I could tell the other educators in training that for a child like him, I truly did have to review things over and over.  It takes an immense amount of review and repetition to get things to stick in his brain, far more than for other children.  I told them that for J, the magic learning tool was music.  I cried as I explained the frustrations of working with a child who feels like they can't do what other kids can do, and how hard it is to stay encouraging and positive, and how important it is to celebrate victories.  That class made his humanity more real to me, I knew he had strengths before, but I became almost fevered with the desire to help him become his best self as I gained tools and insights from that class.

I love being his mom.  I love the things I am learning about learning from him.  I love the lessons he has taught me about humanity, about emotions, social skills, the need to focus on the positive, the importance of finding people's strengths and playing to their strengths.  I love celebrating his victories, when he has good days at school and puts in his best effort, even if its a struggle and he doesn't come away with the same knowledge as other kids.  I love how much he loves to learn, and the fact that the things he is passionate about just stick the first time.  (He loves to learn about animals, and can spout facts about many different animals after only reading them once.)  I love to hear him laugh when he understands a joke (which often doesn't come until we explain it--making it all the more funny when he starts laughing.)

I have loved that his needs have inspired creativity in me and have brought out gifts I didn't know I had.  I can now admit it: I am good at helping kids who need a memory boost.  I have created little tunes and songs to help him learn how to spell words, to help him remember his numbers.  For example, when he was in kindergarten, he really had a hard time recognizing his #'s between 11 and 20.   I came up with these little memory devices: to recognize the number 12 (you sing 1-2-12, 1-2-12 to the tune of Jingle Bells), to help him remember 20 (sing to the tune of La Cucaracha "2, 0, 20, 2, 0, 20.")

It's not all "bunnies and roses" though.  There are a million frustrating moments, and things that aren't hard for so many other children are a real struggle for him.  It is hard not to compare him to others, even his own siblings, and it is difficult to encourage him not to compare himself to others, and to help him keep seeking progress when it comes with such a high effort.  Some days, it seems he sees only problems and no solutions.  This morning was such a morning.  I just wanted to cry by the time I got him to school.

After I took him to school, I have spent hours thinking about him, about how he lives and how he sees problems readily and solutions with much difficulty, and my mind stumbled upon the memory of the "garbage can game" and drew the parallel.  I thought about how horrid it would be to have to live life all the time with gloves on, blocking my ability to do things that other people seem to be able to do with ease.  After living with such a challenge for many years, I'd get frustrated and see problems more readily too.  I am certainly not the world's most patient person, but I'm sure trying hard to be more patient and understanding, to be positive and uplifting, to help him see the amazing person I can see in him.  And I believe that God sent this child to our family to help him to become what the Lord knows he can be, and because there are things I am learning from him that are helping me to become what the Lord knows I can be.  What a responsibility and privilege to be his mother.