Black and white

Rough day.  I don't have words for why it was hard, it just was.  Some of that is regular Mommy hard times, kids fighting, homework battles, not knowing what to make for dinner, having more things to do than I have time for, etc.  It is just compounded when my emotions are this high. 

We got the CD with pictures taken by a professional photographer at Primary Children's Hospital.  (FYI, there is a great program called "Now I Lay Me Down to Sleep" where people volunteer their services to come take pictures for a family losing a child.  What a sweet gift.  Our photographer donated her time and talents to come to the hospital and take these for us, fairly last minute, this was his last day with us.)  This was the first and only time my children got to hold their brother.  That is sad, and it hurts to say it that way, but it was a miracle that they got to hold him.  The doctors and nurses worried that his little body wouldn't handle it well, which is why I hadn't been allowed to hold him until the previous evening.  And he did SO good being passed between people.  There was one point when his oxygen dropped crazy low (it got all the way down into the 40s), and we thought we were going to lose him then, but they cleaned his breathing tube, and he pulled out of it and we got to snuggle him more.  The fact that we even have pictures of Gideon is a HUGE miracle and a huge blessing to our family.  Gideon's color was pretty off because his kidneys weren't functioning, and so she opted to do a lot of black and white.

I thought how relevant this was for me today.  Not everything is black and white.  Not every decision is clear cut.  Not every answer is plain.  We don't have the answers to every question, but we can still hope and trust and try our best.  So I am sharing a few black and white treasures today.

Of all my kids, James has struggled the most with losing Gideon.  He has a very tender heart, and I LOVE this picture!  I just think it captures him so well.  He liked the feel of Gideon's skin on his face, if you notice, he's not so much kissing as he is brushing his lips on Gideon's soft head.

 

 

 Poor little dude, the breathing tube was pulling on his upper lip a bit in this picture.

 Hyrum was fascinated by Gideon's tiny hands.  And tiny everything else.

I am fascinated by his tiny hands too. 

They motivate me to practice the piano. 

This picture makes me think: "He's got the itty, bitty baby in his hands, He's got the itty, bitty baby in his hands, He's got the itty, bitty baby in his hands, He's got the whole world in his hands."  And he does.  And I miss Gideon, but I know God has everything "in his hands".  (And singing that song in my head made me feel better today.)

I just noticed, it looks like he is waving goodbye.  So I put this picture at the end.  Here are my thoughts about this picture.  His body had suffered so much, and even though I wasn't ready for him to go, I think he was more than ready, and hung on so we could have these pictures and the memories of the special day we had with him as a family--his last day.  Such a sweet thing to do for his family.  I love my Gideon.

The talk for Gideon's funeral

At the request of several other people, I am posting this.  I did not read it at the funeral, as I felt the spirit prompt me to add/delete different things than I had written, but the flow is pretty similar and the main ideas are all the same.  I felt prompted all through my journey with Gideon to be watching for God's hand, and the talk was really a list of the many miracles I was able to experience (or know I will experience one day.)  Maybe one day I will listen to the recording of the funeral and type the actual word for word talk I gave at the funeral, but for now, this is close enough.

I never intended to speak at my own child’s funeral.  I never intended to plan and carry out my own child’s funeral.  But because of all people on earth, I spent the most time with him, I wanted you to be able to know Gideon like I knew him, and understand the miracles that surrounded his life.  I believe in miracles.

I knew I was pregnant before I knew I was pregnant.  At night, a voice came to me and said “Mommy, I’m coming.”  I knew a very special child was on his way.  That was a miracle.  Especially as the news at the doctor’s visits grew worse, I was glad to know he was really coming.  At my last doctor visit, my hope was nearly popped like a balloon when they told us that his kidneys were likely damaged enough for it to be lethal.  Scott & I cried and prayed together.

This labor was one of the hardest and longest for me.  I was stunned and horrified when he was delivered and they whisked our baby to the NICU and about 15 minutes later, they came in to tell us that they had been doing chest compressions and trying to resuscitate our baby, with no luck so far.  Again, we prayed.  I do not know that there have been many times in my life when I have prayed harder than at that moment, when I prayed for his life.  I prayed to have time with him.  I was asking for a miracle.  I also prayed to be able to accept the Lord’s will.

And thus began our “miracle week”.  I prayed so diligently each day for a miracle.  I wanted him to live.  I wanted to hold him.  I wanted him to have a whole, healthy body and live with our family. Miracles came, as I’ve stepped back, I’ve been able to recognize them.

On Sunday, he survived a risky transfer from one hospital to another, and a surgery to drain his kidneys and fluid pockets in his body.  I got to touch his little head and feet for the first time.  I have never rejoiced so much in every tiny movement, in the power of touch as I have during the last week.

On Monday, he survived each of his siblings coming to see him and say “hi”.  (And we survived too, which is sort of a miracle of it’s own.)  I had prayed and hoped that at least his sister and brothers would be able to have memories of seeing him.  I got that miracle.

Medical science is a miracle.  The doctors, nurses, and equipment that they use to save lives and sustain lives and improve lives are all amazing.  Scott and I went to see Gideon each day, and he was beautiful.   I loved how I felt when I was near him.  He always made me feel so good.  I couldn’t hold him yet, but I could feel him.  He helped me to feel really happy.  Again, I feel like that is a miracle.  I miss that now that he’s not here with me on earth.

By Wednesday afternoon, they had tried most everything they could think of.  His body was retaining fluid rather than getting it out like it should.  His small lungs were being pressured by all the fluid outside them.  So they turned up the pressure on his ventilator to compensate.  It was keeping him oxygenated, but his lungs began to show signs of damage.  The doctors told us he was not going to make it.  They warned us that time was limited to days, maybe a week.  Scott gave him a blessing with consecrated oil, but the Holy Ghost did NOT prompt Scott to promise our son that he would be better.  And I cried.  I hadn’t seen his eyes.  I had never held him.  My milk had just come in.  I wanted this baby to live, and I wanted him to live NOW.  

Thursday, we spent most of the day at the hospital.  We talked with each of his doctors.  We spent time talking and singing to Gideon.  Gideon opened his eyes and looked at us.  And Scott and our good bishop gave him a name and a blessing.  That blessing was a miracle to me.  While I still hoped for the miracle of his being healed and having a perfect little body, I had been trying to align my will with whatever Heavenly Father wanted for our family, and especially for Gideon.  As the Spirit directed Scott, Gideon was told that his life, though short, had so much meaning, and would continue to influence others.  And he was told that Gideon’s life was enough and he had done what he needed to do.  I can’t explain the many emotions I felt.  That evening, another miracle happened.  Out of the blue, the resident of the evening shift asked me “Would you like to hold your son?”  I was thrilled and I cried.  My body had craved this ever since he was born.  I got to hold him.  Scott’s parents in South Africa were able to face time with us as I held him for the first time, and see their grandson alive. That day, holding him, feeling the spirit as the Lord directed Scott to bless our baby, seeing his eyes, and modern technology that allowed us to connect with people far away were miracles.

Friday was a beautiful family day full of miracles.  We got to have a one week birthday party for Gideon.  The kids came and we sang.  When we sang songs to him, his oxygen levels went up, so they could turn down the percentage of oxygen he was receiving through his ventilator.  I learned that he loves music, and that it’s good for him.  Each of my children got to touch him, kiss him, hold him, which the doctors worried that all that jostling might be the end for him, but he did very well.  We got to take pictures as a family, which was not something I was sure we would get the chance to do.  And Gideon sustained eye contact with Scott and I each for a few moments as he looked between us.  He fought to stay alive for that week.  To give me the chance to see his eyes and to hold him.  To give his siblings memories with him and to give our family the chance to take pictures so we will have these treasured memories forever.  His body was so swollen.  His life in a body that wasn’t functioning was his gift to us, to give us something tangible to have here on earth before he left to go to paradise.  

I realized after he passed that the miracle I wanted the most: for him to have a healthy, happy body--is promised to me already.  It is a guaranteed thing.  I was asking and praying for something that is already part of the plan Heavenly Father has for all of his children.  We ALL get to be resurrected because Jesus lived on the earth, and died for all of us, and was resurrected.  I don’t know that I have ever appreciated that gift more than now.  

I am not excited for the wait.  I miss him.  Baby clothes and diapers make me cry.  Kind people who serve our family make me cry.  But I am SO HAPPY.  I have a child who was so good, that he didn’t need to stay.  My child whose spirit was strong enough to speak to me before he was born is doing whatever Heavenly Father needs him to do up in heaven.  My child WILL have that perfect body.  Our family will be together forever, because we were sealed in the temple and we continue to work hard and try to be the people Heavenly Father wants us to be.  

There have been times when I felt like this was more than I could bear.  My all time FAVORITE scripture is Phillipians 4:13 “I can do all things through Christ, which strengtheneth me.”  Another favorite that I have relied upon is in the Book of Mormon in Mosiah 24.  The Nephite people were enslaved by the Lamanites and were being given very heavy burdens to bear and very bad treatment.  In verse 15 it says “the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”  The Lord helped their burdens to not FEEL heavy, but the burdens were still there.  I am not to the point where I feel cheerful or patient.  I want my baby now, and I likely have to wait many years.  But there are many moments when my burden does not feel so heavy, and I feel the Lord’s strength helping me.  The gospel plan gives me joy and happiness that I have been blessed to have such a special child join our family, even if he only came for a few days to give me the chance to hold him.  

Heavenly Father knows me.  He knows the reminders I needed, and he heard my prayers.  He sent me reminders of people who have passed from this life already, that will be with my son.  He gave us Gideon alive for a week.  And he will give us Gideon again, whole and perfect.  And I am glad to know his plan, to have the scriptures to study from and learn.  I am grateful for the privilege of being Gideon’s mother here and forever.

Wisdom from my children

So...my kids are pretty smart (sometimes).  They say some things that I find fairly profound. I thought I'd share a few that I have been thinking about today.

ETHAN:
During the hard week when Gideon was in the hospital, I'd come home in the evening before bed and spend time with my kids.  This gave them the chance to sleep in their own beds, me to sleep in my own bed, and for us to still have some family time (almost--Gideon was not with us here...ever.)  I'd tell the kids what the doctors had told us, and how Gideon was doing.  During the last 2 days, when our updates and information was pretty bleak, we'd talk, and cry.  And then Ethan would turn on America's Funniest Home Videos, so we could have a good laugh.  It was odd how therapeutic it was, and the way he coped with the sadness, by getting it out and then moving on to laughter.  Since then, during our sad moments, he is inserting happy into the situation by turning on Disney music, or other upbeat fun tunes.  Laughter and good music really can be so healing and therapeutic, and I love that it has been a coping strategy for him.

JAMES:
This morning, James woke up early and came to get a snuggle in our bed.  He said to me something like "Mom, it seems like after someone dies, we just need a little more love.  It helps me feel better."  I think he hit the nail right on the head.  I have needed extra hugs.  The kids have needed extra hugs (and that works out well with my need for extra hugs.)  We are better about consoling each other, even the kids sometimes see each other struggling and reach out to give a hug or read a story or find something to help.  (Don't worry--they still fight like normal siblings.)  We have encouraged communicating when one of us really has a need, whether it's "I need a hug." or "I don't feel like I can talk about this right now, I'm not ready."  And I think they are getting better at it, and about not judging each other for crying or not crying, or needing a hug or needing a laugh.  This is a favorite picture of mine from the day we got to spend with Gideon in the hospital.  It captures the spirit of "needing a little more love" very well I think.  We all knew Gideon was going to die, and it was his last day.  Of course it was a struggle, and our emotions were very tender that day.

 



ALYDIA:
My daughter said something when I was pregnant that had made me think a lot since then.  Of course, being the only girl, she hoped for a sister.  On the day we found out that Gideon was going to be a boy, I talked with her about it.  She had a very sweet answer.  "I'm still happy that he's a boy.  It just might have been a little easier to be happy if he was a sister."  It feels like such a long time ago that we had that conversation.  I loved what she said, and I agreed with her, having hoped for a daughter myself.  And now, as I look back, I think I was ridiculous.  If I am blessed to get to have another baby, and people ask what I am hoping for, I'm going to tell them "a healthy baby."  And...the truth of it is:  I'm still happy that we had a Gideon.  It just might have been a little easier if he was still here. 

HYRUM: (He is so wise, he gets two paragraphs.)
Trying to quote what he had heard others tell him, he said to me today "You don't get what you get, and then you throw a fit."  I thought that it was a perfect way to describe how I felt on the day Gideon passed away.  I didn't get what I got (Gideon) and then I threw a fit.  I didn't really ever throw anything--but I sure felt upset and wronged and full of disappointment.  And there were moments when I did feel like throwing stuff, or throwing up.  Of course the saying actually goes "you get what you get, and you don't throw a fit".  It's hard to not "throw a fit" sometimes, but I am trying to accept what we have been given, and know that God is in charge.  I don't understand why this happened, but I do know that God does.  Isaiah 55:8 says "For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord."  And it is getting a little easier day by day to accept that without the desire to throw a fit.

Hyrum looked down at his arm today, and said "Mom, the scab is going away!  Why do scabs come off?"  Now this might not mean much to anyone, but it did to me today.  I explained that our bodies can heal our hurt spots, and scabs shrink and come off.  Sometimes they leave scars or tender spots, but scabs don't stay on forever.  And I thought about my own healing.  And I think that the scabs are coming off.  I can talk about Gideon and not cry.  Not every time.  But I am getting better at it.  There is still a lot of tenderness, and I think the scars will always be there.  It will hurt sometimes.  But it's not an open wound like it used to be.  And I feel like I am getting better at being able to see the good that is coming from our loss--the closeness of our family, our dedication to God.  So many people are praying for us, and I know it's helping me to have peace.  I still feel like I am surfing on a tidal wave of prayer and love from so many people around me, and I am so grateful for the love, prayers, and strength being lent to me. 

A hard day

I am trying to be open and honest in here about the good and the bad.  

Today was hard.  

I started college classes today.  My older 3 children had started school a week and a half ago, and my house felt so quiet with just one child home, and he keeps mentioning Gideon, he is used to having siblings around, and it has been difficult for us both to adjust.  I decided to go ahead and register for classes to get us both out of the house a little more.  And i was excited this morning as I drove to Ogden for my Music for Elementary Teachers class.  

And then it started.  Silly humanity, the natural inclination to judge.  Second guessing.  The guilt.  As I drove to school, I wondered if I was doing the right thing.  I wondered if I am running away from the sadness by being busy doing school.  I felt guilty for feeling happy and excited about attending school.  I wondered if I somehow chose school over my son, and that's why he's not here.  I wondered if I should be spending the time away from my 3 year old, instead of just keeping him close.  The self doubt, the wondering, the beating myself up about it.  And I had to tell myself to stop.  I had to remind myself of a beautiful sermon given a few months ago by an apostle from my church.  His name is Dieter F. Uchtdorf, and he talked about being merciful, and about not judging others.  Including ourselves.  His words echoed as I told myself to "stop it."

The talk is seriously so good.  So if you need a refresher, or haven't seen it, please go listen to it.
Dieter F. Uchtdorf's lesson "The Merciful Obtain Mercy"

One of my sister in laws watched Hyrum for me today.  She was also watching my youngest niece, who is about 4 months old.  When I arrived to pick up my son, I wanted to hold her.  So I washed my hands and picked her up.  And it hit. So. Hard.  She smelled like my baby.  If it hit like a wave, it was definitely a tsunami.  I had to fight tears.  And then I was mad at myself (again) because I don't want to feel any sad or pain when I hold my nieces or nephews.  I just want to rejoice in who they are.  And again, I had to tell myself to "stop it".  It's OK for me to want my son, and to miss him.  It's going to be hard and it's going to be harder in some moments, especially when a wash of memories hits like that.   AND it's also OK for me to work harder on finding the joy in the child I am holding.  I kept her in my arms.  I talked to her and got her to smile, and I enjoyed holding her.  Moment conquered.  But it had surprised me how hard it was to have that moment.  I was not prepared for how hard it would be, because I have always enjoyed holding any baby, but especially any that belong to family members.  Thankfully, her name personifies happiness--her middle name is Joy.  :)

Another hard thing about today was that we got Gideon's death certificates in the mail.  It's not like it's news.  I know he's dead.  I helped put the lid on the coffin (a VERY hard moment for me).  But seeing a death certificate for my child when I haven't seen his birth certificate made me feel another surprise wave of sadness that I wasn't anticipating.

Being thankful in all things, I have been blessed today (again) by the kindness of people here on earth who are in tune with the things I need on hard days.  A friend of mine brought me flowers today, and said she didn't know why, but she really felt like I needed them today.  (And I did.)  Another friend of mine yesterday had given me a story she wanted me to read, and some thoughts of hers.  I didn't get to it yesterday, but today I picked it up, and it was a story of an "out of body" type experience someone had, where they could see and spoke with some of the spirits in heaven.  It helped me to remember that Gideon truly is in a better place, and that he is not lonely, and that God has good things for him to do there.  Another friend of mine texted me tonight and offered to do some ironing for me (a house job I really loathe), but the service and kindness made me happy.  Thanks to all the angels on earth who have served our family in this tough time.  

We watched Pollyanna today (a favorite of mine--haven't seen it in years and I was reminded today of why I love it so much), and at the end, I cried (and notice now it is raining--sorry everyone local, it seems the heavens and I are on a schedule.  If I cry, they cry.  If they cry, I cry.)  When the reverend says to Polly "We ought to kneel down and thank the Lord that she came to this town." I felt it.  TRUTH.  I am thankful for Gideon's visit.  And I do thank the Lord often that Gideon came to our home and into our lives.  He has made us better people.  The other part that made me cry was when the whole town comes in with gifts and kind words, and they fill up the ground level of Polly's house.  I have felt like that.  Like so many wonderful people have been coming to shower us with kindness, and have been sharing in our trial and our grief with us.  I truly hope you are sharing in our joy too.  

This is not a journey to find joy.  There is joy IN the journey (hence the blog title).  There are hard days.  Sadness sometimes sweeps me off my feet or kicks me in the shins and surprises me.  I really miss my boy.  But I do know that he is where God planned for him to be.  And I absolutely believe that God knows what he's doing to help each person be their best, happiest self.  I rejoice in his plan for my family.  I rejoice that I have the truth of the gospel in my life, and that now, more than ever, I am reading his words and seeking his spirit.  I am giving up the things that don't matter and taking extra moments to hug a little longer, and express love more openly.  I know how fragile life is.  My husband has said "I think if I could see all that God sees, and see the end results, I'd probably be shouting from the rooftops for joy at this experience."  I'm not quite that joyful, but I am finding joy and seeing good in this journey.

Job

In today's Sunday school lesson, we talked about Job.  I do not even mean ever to compare myself to Job.  He had it way worse than we do.  And I fear that ever comparing myself to him means that I'll end up with some more severe trials--loss of house, losing another child, etc.  That has become a huge fear of mine now, I guard my remaining children more carefully, and the thought of losing another one makes me feel both sick and terrified at the same time.  So I am careful never to believe that I am like Job.    I have, though, marvelled at his faith, his ability to see things in perspective, and have thought about how I want to be like him, without having to actually be like him and endure all that he endured, and suffer the way he suffered.

A few examples.  When Scott and I were first told, right after our final ultrasound that our baby's condition might be "lethal" (a word I have come to REALLY dislike--the exact word chosen by the person who gave us the news), I remember feeling a horrid sinking feeling, but also a feeling that I needed to keep it all in perspective to make it through.  I did not want to be the "curse God and die" type person, or even the person who questioned why the Lord would send us a trial such as this.  I have tried very hard to both trust the Lord completely, and also to recognize his hand in the things that are happening in my family.  It is not always easy, but I have seen God's hand as I have looked for it, and know he has been here through the journey. At Gideon's funeral, I talked about miracles that I have witnessed along the journey of my pregnancy with him, and miracles during the week we had him.  

Job said to his friends: Though he slay me, yet will I trust in him (Job 13:15).  He also said "The Lord gave, and the Lord hath taken away: blessed be the name of the Lord (Job 1: 21).  Job seemed to have this awesome and perfect trust in the Lord, knowing that his wealth and his children and his blessings were never his anyway, always belonging to the Lord.  When I remember that Gideon was not ever mine to begin with, that God loaned him for me for only a week, it is easier to deal with the loss. 

I know that God knew that cuddles and snuggles and holding my baby are of huge importance to me.  I feel like the Lord gave me a miracle when he gave me a week with my son who had so many health problems.  And like Job, I have a firm belief in the resurrection (check out Job 19: 25 & 26)  I know that because of Jesus, I will see my baby again.  In the flesh.   And I hope that my strong testimony, like Job's, can help me through the rough times.  I am sure that Job's firm faith was a huge help to him, especially knowing that his children would be resurrected and that though they were lost to him now, they were not lost to him forever, if he would endure and keep doing what God wanted.

The thing is, when we read Job, we usually read the 1st 2 chapters, and chapter 19, and then skip to chapter 42 where the ending is.  Do you know why?  Because his journey is so despairing.  He has his strong moments, his assertions of faith and strength.  But there are horrible, sad moments too.  His friends, his wife, they all try to help, and they don't know what to say, and they say the wrong things.  People--his own friends even, misjudge him, they assume he has done some awful things to deserve what has happened.  He goes through some pretty depressing times, even though he knows he is in God's hands, and he knows that he will see his redeemer, and he trusts God, it doesn't stop him from sometimes wondering and feeling down.  It's a rough journey.  It's a ton of up and down.  We tend to focus on Job's strengths, his testimony (and I hope people will show me the same kindness), but it doesn't mean he didn't struggle majorly with all that he had to go through.  And I struggle many times too, in ways similar to the ways he did.

He had moments when he wished for the way things used to be.  Job 29:2 says "Oh that I were as in months past, as in the days when God preserved me".  All of chapter 29 is a looking back at the good times chapter, wishing for how things were.  I wish like that too.  I wish I was still pregnant with a baby who was kicking and moving strongly, for the time when I could hold him, or even just touch him through his special incubator type bed, even if it was in the NICU. 

There were moments when Job felt like he couldn't find God.  He knew God was there, but felt like God was hiding from him (Job 23:8&9).  He felt like the Lord wasn't listening to his prayers. Job says in Job 30:20 "I cry unto thee and thou dost not hear me."  Sometimes I wondered why God had chosen not to answer our prayers, and the prayers of many others, that Gideon would be healed and well.   I do trust though, that God is in charge, and like Job, he has blessings in store for us.  I trust that God had reasons for not healing Gideon.  I know that Gideon was a special spirit, and that most likely, he was too good for earth, and that makes me feel privileged to have been his mother.  It has taken a little while for me to feel like that, to lose that sinking feeling.  I'm sure in hindsight, Job probably felt "special" that he had been trusted enough by the Lord that he was chosen to bear so many trials and then was given so many blessings at the end of his story.  But his journey was still discouraging and hard.

At the end of our lesson today, the kind man who taught it came up to me and apologized if the lesson was hard for me, and told me that he hoped I didn't feel like he had belittled our trial in any way by discussing Job.  In no way was I offended or hurt or did I feel belittled.  I have thought of Job often, even as we were just beginning this trial, and I appreciated the discussion we had today, because I learned something super awesome.  

Trust is different than love.  Trust is in some ways greater than love.  God trusted me enough to have this trial.  I know he loves me, I never doubt it.  I know he wants me to be happy.  I know he's in charge of everything, and that he has chosen what we need to bear.  And I am glad he trusted me enough to choose this one for me.  I am glad he chose us to have Gideon be our son. 

I do hope he doesn't trust me as much as he trusted Job, though. 

Rain and Tears

I am sure I have told this to many people, but I thought today was a good day to explain.  Since Gideon, rain makes me cry.  There are a few reasons.  Many people assume it's because of the Steve Wariner song "Holes in the Floor of Heaven".  And that is partly true.  I do love that song very much, and when it rains, I think of Gideon, and wonder if he misses us.  It seems that heaven is crying, and it makes me want to cry too.

There is more to it than that, though.  When I was in the hospital, the rain was a sign to me of God's tender mercy and care.  A few days before I was admitted to the hospital to begin the "rollercoaster", I had a priesthood blessing from my husband.  (For those who may not know what that is, a brief explanation.  The priesthood is God's power.  It's what he used to create the earth.  It's how Jesus healed the sick and the reason he laid hands on his apostles heads when he called them to become apostles, to give them the use of his power as well.  A priesthood blessing is given when a person who has been given the priesthood lays their hands on the head of another person and-similar to a prayer-, gives them counsel and/or healing from the Lord.)  In the blessing I was given, I was promised that through everything, I would be able to keep up with the things that were most important to me, our home and our children.  I was blessed with comfort and strength.  As those words were spoken, I felt such relief.  I knew the Lord knew the worries in my heart, and that no matter what came, God was with me.

 When I was admitted to the hospital, I was so worried about all the things I couldn't be doing at home.  I knew what I had been promised, but I was completely unprepared to be admitted to the hospital and have a baby; as far as I knew, I was only going in for an ultrasound.  So my home wasn't cleaned, the laundry wasn't caught up, I hadn't arranged for people to care for our kids, Scott was supposed to be leaving on a trip to Taiwan in a few days, and my garden was going to go uncared for during the hottest time of the year.  Scott's car has an air conditioner that is moody, and doesn't like to work when it's REALLY hot.  I knew what God had promised me, that the kids and the things that mattered would be cared for, but I was wondering how it was going to happen.    So the rain was such a tender mercy to me.  It watered my garden for me when I couldn't.  It made me cry when it rained so hard--I was sitting in my hospital room, and I felt very strongly that it was an answer to my prayers, and the fulfillment of a blessing I had been promised through God's power.  We live in a desert.  It doesn't rain much in the summer.  But it rained for me.

And I felt so blessed.  Our family and friends rallied, my sweet sister in laws (I am VERY blessed to have a wonderful relationship with every single one of my in-laws) came to my house and cleaned.  They did laundry, washed my blinds, windows, dishes, swept, mopped, did bathrooms, vacuumed, etc.  As humbling as it was to receive those blessings at the hands of others, I was so grateful to know that the things that mattered to me were being taken care of.  People offered to take my children.  I didn't even have the chance to take everyone up on their offers for help, because things happened so fast with Gideon's short life, but so many people made things happen.  I spent a few hours in the morning with my children, and then left to go to Primary Children's each day.  People brought us meals.  I remember feeling like blessings were pouring out of the sky.  Like if I tried to run away from them and hide it would be like running around in a rainstorm trying not to get wet.  Blessings rained down on our family.  I was not really the one keeping up with everything, but it was not being neglected.  In fact, my house looked cleaner than it has in a very long time!

 Since that time, we haven't had more than a few days without rain.  It rained off and on during the week Gideon was in the hospital, so we could take Scott's car (better gas mileage) to and from Primary Children's hospital, without worrying about the air conditioner.  That also allowed us to leave our minivan with whoever was caring for our other children, which helped us to be able to care for them, and helped others care for them as well.  Since we were busy with hospitals and our other children, God took care of our garden.  Perhaps that is no big deal, but I love my garden, a lot, and it was a big deal to me, and God knew it. 

Perhaps it sounds odd, but humor has been great medicine for our family.  Scott's older brother Daniel, who lost his first wife several years ago, came and spent some time talking to us about grief and about dealing with loss.  On the night Gideon was born, he reminded us that it's OK to be happy, and there is no guilt in moments filled with humor, joy, and peace.  We should not beat ourselves up trying to do things that are humanly impossible (such as staying awake constantly or not eating because we refuse to leave the bedside of our loved one.)  It was immensely helpful advice, and it helped us to learn how to laugh and cry at the same time.  So...in finding humor in our situation, Scott and I have joked a little bit that if we moved to California, we could probably stop the drought there.  It just seems to keep raining, to remind us that God is watching out for us, and to help us with our garden.

Another reminder associated with the rain is linked with the song "Holes in the Floor of Heaven."  Steve Wariner also sings "Two teardrops."  I had a very "two teardrops" moment on one of the rainy days when we were visiting Gideon. 

I don't intend to put a link to a song in EVERY post, but it might make more sense if you hear the song, so here it is.  Pay special attention to the second verse.

Steve Wariner-Two Tear Drops lyrics

So...the "Two Teardrops" moment came on the Wednesday before Gideon died.  If you have ever been in an NICU, you may understand that there can be several babies all in a tight space.  There is not a lot of privacy or separation between one patient and the next.  There was a sweet mom "next door", in the next bed over, also with a baby boy, who had been born at 34 weeks.  I had talked with her several times, her baby was not needing nearly as much attention as ours, but had struggled to eat enough and be growing enough with just nursing, and had required some supplemental nutrition and care.  She was very kind, offering suggestions and advice of things their family had done to help their children feel connected to this new baby that was in the NICU, offering to take pictures when we had our kids come visit, and things like that.

On this particular day, the doctors wanted to meet with us, both Scott and I.  They came to Gideon's bedside and explained that with all of the things they were trying, Gideon was not responding as they had hoped.  Because his kidneys had gotten so backed up and swollen in utero, his lungs were very small, even for a 29 week old.  They had tried giving his lungs more room to grow by surgically draining his kidneys, and hoped that draining the kidneys and increasing his blood pressure might help his kidneys work, and in the mean time, he had been on a ventilator helping him to breathe.   But his lungs weren't sufficient.  In fact, his lungs were getting worse, and his kidneys were still not functioning.  His body was swelling, not enough urine was being made compared to the liquids he needed to survive, and his body was not removing the toxins it should, and his ability to absorb oxygen was just not enough.  The ventilator they had him on was helping to keep him oxygenated, but his tiny lungs were so underdeveloped that the X-rays showed signs of lung damage--the lining in his lungs was beginning to shred.  They explained that they were buying us time, and that at most, we had a week.  They recommended that if we wanted to be able to have him pass calmly and in our arms that we begin considering removing him from the ventilator. That was one of the harder moments in my life.  I am rarely at a loss for words, and I had none.  I actually said "I have no words."

My mommy friend (whose name I do not know) from the next bed over had heard.  They had closed curtains around us, so that people wouldn't have to see our grief, but curtains don't do much to block sound.  She did not come over and interfere or say anything.  But later, I saw them packing up all their things.  The diapers, the booklets and information, her pump kit.  She was taking her baby home. 

I was so excited for her.  And jealous.  And I didn't want to be jealous, just happy for her.  Truly, I was excited for her whole family, and so I put on a brave face, and I went over and told her how glad I was that her baby was doing well, and that I was so happy that their baby was going to get to go home.  She told me her children were already arguing over who would get to hold him first.  And then, knowing that I hadn't gotten to hold my baby yet, she asked me: "Would you like to hold my baby before we go?  I know that's the hardest thing about having a baby in the NICU."  I was overcome.  I didn't know that I wanted to hold her baby until she asked, and it sounded like the best thing in the world.  And so I held her baby first.  Before my own.  And it meant the world to me that she had shared her joy and her baby with me. 

And I thought of that song.  The "You've got a brand new angel and I've lost mine." part of the song.  I stood there and held her baby and just cried.  And she told me "I'm so sorry about your baby."  She was the first, besides the doctors, to tell me those words that I hear over and over.  And there really are no other words to say, so don't feel bad if you've said them. 

So when it rains, I think of all those teardrops drifting to the sea.  I  think of the blessings  and kindnesses that felt like they were coming down so fast and so hard.  And I think of the tender mercies of the Lord watering my garden when I couldn't, and I think he is reminding me that he is still watching over me.  I think of my angel up in heaven.  I sort of hope he misses me, and I sort of hope he's just happy to be up in Heaven.  And I think of leaving Primary Children's hospital on a rainy day after learning that my baby was not going to live long, and getting to hold someone else's baby that was going home.  And the rain makes me cry.  A good, bad, happy, sad cry.  

 

 

Constructive outlets

Holding Gideon for the first time

 

This is Gideon Daniel Chase.  Our little warrior.  His battle was short, but no less important, and I am hoping through this blog to share some of my feelings and things I am learning as I try to gain perspective from what has happened to our family. I hope it will add to the meaning of his life, and help me to remember to be better. It is very hard to have already had to send this baby back to Heavenly Father, and I often ache to have him close.  I love the above picture, because it was taken the very first time I got to hold him.  He was 6 days old.  We knew he was not going to live long. I was thrilled beyond belief when the nurse asked if I wanted to hold him, and how good it felt to have him near me.  I didn't want to let him go.  In hindsight, I wish I'd have just stayed all night with him.  I was trying to take care of myself, and my other children, but knowing how much I ache to hold him, I'd have stayed and held him for longer.  I'd have asked the nurses earlier on if I could hold him.  He was so fragile, and they worried so much about moving him more than necessary.  It was hard to see my child and be afraid to touch him, to ask to pick him up.  And it felt so good to be able to hold him close and feel his little head against mine and have him hold my finger.  It made me appreciate more what I was able to have with my other babies: the chance to hold them shortly after birth, to see them have their first bath, to nurse them all night, to bring them home with me from the hospital.  I never realized before just how good I had it, until Gideon came and taught me to appreciate it. 

 

I want this to be a constructive outlet as something I can do when I miss him.  Writing about what I learn, what I feel, and what I am doing may help me, and hopefully it will help others, and keep his life meaningful.  This has been and continues to be a difficult journey.

One thing I have begun to do more of is to play the piano.  Look at his beautiful fingers.  I saw those gorgeous hands and long fingers, and I wanted for him to learn to play piano.  And I won't get the chance to teach him for a long time.  So before he passed away, I promised him that I would get good enough to play Hungarian Rhapsody #2 by Franz Liszt.  (It is mega hard.)  And that when we are resurrected and together, I will teach him to play.  He had the potential to do great things with those tiny hands, but not enough time on earth.  But I have time here, and I'm going to choose to use it to expand my talents.  I have Gideon's picture right on top of the piano, and as I play I can see him just above me, and it motivates me to keep learning and working hard to do what he won't get to do for many years.  It helps me to feel connected to him.

The problem with playing more is that sometimes I play my feelings out, and James especially picks up on the emotions I am feeling.  There is a Beethoven Sonata that has become my "Gideon song", because it expresses such a rollercoaster of happy, sad, energetic, panicky, calm, and it feels like what I felt like during the last weeks of my pregnancy and during the week of his life.  Sometimes the doctors seemed hopeful, other times not at all.  Some moments were intensely sad, and others crazy exciting--he almost died several times, and those moments were always terrifying.  When I first checked in at the hospital, they began monitoring him for several hours, and it felt like his steady heartbeat was all I could hold on to for comfort.  I hoped that it meant he would be steady and strong and come out OK.  There are spots in the song that remind me of the sound of a steady heartbeat.  Anyhow, this song fits so well the emotions of that time.  One night as I was practicing, James came upstairs completely in tears, he could feel all that I was pouring into the song.  I had never told any of my kids that it reminded me of Gideon, but he was feeling it.  He was crying and told me he really missed Gideon.  Sonata Pathetique opus 13 is my Gideon song.  It is a challenge to learn, but I will need the challenge to accomplish the ultimate goal of Hungarian Rhapsody #2. 

Beethoven: Pathetique Sonata opus 13  I hope this link works: if you want to hear it, try this.  (Our computer was having issues and wouldn't play sound--yes I had the speakers turned on-- so I don't know if the link truly works.)

And speaking of challenges and ultimate goals: even though losing my baby has not been my favorite challenge in life, in fact it is safe to say this is one of my least favorite challenges to deal with, I do feel strongly that it was chosen for our family to help us accomplish our ultimate goal of celestial glory and returning to live with and be like our Heavenly Father.  I have already seen changes, in the way I understand the scriptures, in the way I deal with my children, in my NEED to have the spirit as my companion.  I raise my voice less, I am more insistent on the children not fighting, and I am much more diligent in training them how to solve problems without raising their voices or getting contentious.  I read my scriptures more, I seek the Lord more often.  I am motivated now, more than ever, to keep my covenants and be the best, so I can be good enough to be with my baby again.