Does your son understand?

We have been asked many times does your son understand what has happened with Spencer and how has he responded to it all.  After realizing I never have spoke about how we told him about his baby brother being sick and how he would not be coming home with us after he was born, I wanted to share with you his journey through all of this.  

When we first learned about Spencer's condition, I remember we had discussed briefly how we would handle talking to our then 2 (almost 3) year old about it.  During the week of what I call our hell week, our son knew that we had been at the doctors a lot.  The first day a friend of mine picked him up from school since we got home late that evening from the hospital and we told him that we had found out that baby brother was very sick and we had to go to the doctors that week to see if they could help him.  I remember after returning home on the 2nd day our son came to me when I was laying in bed with his doctor kit and told me that he was going to check me and take care of me and baby brother.  I remember thinking to myself, as tears filled my eyes, that he is going to be a great big brother.    

After learning that Spencer was not going to receive any fetal intervention we then had to shift gears a bit and let our son know that baby brother was very sick and was not going to come home with us.  As time was approaching that Spencer's arrival was going to come sooner than we had expected I remember one afternoon talking with our son and I asked him, "Would you be okay if baby brother went to live with Jesus in Heaven?"  The answer from him was a resounding "NO!  I want baby brother to live here!"  I shouldn't have expected anything else because we too wanted Spencer to come home with us.  But now what, how do I get him to understand that Spencer is not coming home with us and we all will have to say our goodbyes and "See you soon!"  I didn't want to press the issue too much with him, but knew that I needed to get him to a place where he understood that Spencer was not coming home with us.  A few days after our first conversation I brought it up to him again and asked him the same thing, "Would you be okay if baby brother went to live with Jesus in Heaven?"  This time his answers was completely the opposite, he said "That's fine."  I assured him that Jesus would take really good care of him and that one day, a long time from now, we would see Spencer.  

I made sure that our family knew how we had been discussing this with our son and how I would like them to approach the subject in case he had questions or spoke with them about it.  As you probably know if you have been reading the blog, our son did get to meet his baby brother and he was so excited to hold him.  When he came in the room to meet Spencer we did tell him that baby brother had already gone to be with Jesus in Heaven.  I think it was important for him to meet Spencer, hold him, kiss him, and say his goodbye to him.  Although he may never remember that very moment except through our constant conversations of Spencer and pictures we reminisce through, we never wanted to question ourselves down the road should we have if we hadn't.  

Our son talks constantly about his baby brother and it is so sweet to hear him bring him up.  I know that he is and would have been an amazing big brother to Spencer and one day he will get that opportunity when we are all reunited again in heaven.  You might ask how I handle certain situations when we are out in public and I will say that I never dismiss him when he brings him up, Spencer was and will always be a part of our family.  Since my son attends school where the staff is aware of our loss I have asked that when our son brings up Spencer that they can engage in conversation with him about it, let him tell you all about his baby brother, but I have always asked that they not initiate or start a conversation with him about Spencer on their end.  Our son needs to process what we have gone through and I think it is important for him to grieve in the best way for him.  

Since our son does speak of his baby brother often, some of his conversations with us catch us off guard because they come at times we don't expect.  One conversation that I remember very specifically is this one.  I remember sitting in the office and I think I was looking at pictures of Spencer and our son had just woke up from his nap and came to the office to sit with me.  This is what he said to me...

Son: I am going to call Jesus and go get Spencer. I need a new car and it wouldn't take long. I will put baby brother in a car seat and bring him home. That okay?
Me: I sure wished we could.
Son: Where does Jesus live?
Me: Heaven
Son: Is it on the right or the left? You can go with me.
Me: I am not sure and I would love to go!!

I remember tears falling from my eyes uncontrollably when this happened but then little giggles from the question, "Is it on the right or the left?"  

Shortly after this conversation had happened I picked our son up from school and as always they do a craft every day.  As we were walking out to our vehicle he was begging to show me his craft for the day which was a bit unusual for him, he was extra proud of this one today.  As I pulled out the paper from his backpack I noticed that the top of the picture said "My Family" and there was four people that he colored and glued on the paper.  I asked him who this was and he quickly pointed to each one and said, "This is daddy, this is mommy, this is me, and this is baby brother."  I was so surprised but then began to question, did he do this on his own or was this initiated by his teacher.  I of course asked and they told me that he insisted on putting his baby brother on there.  Melt my heart.  Most recently our son did this again when we were at MOPS and they did something similar and it said "Family of Faith."  This particular day when I saw this I started to cry in the hallway when I saw it.  There are times were I am really good and I don't cry, I smile, but there are times were it is near to impossible for me to contain myself and this was one of those times.  Below are the two pictures he colored for us.  

So you ask, does our son understand?  I will tell you absolutely!!  I would say he knows as well as a 3 year old can.  I believe that he knows exactly were Spencer is and I think that by keeping our communication open for him is a wonderful thing, Spencer was and still is a part of our family.  

"Now faith is confidence in what we hope for and assurance about what we do not see."  Hebrews 11: 1

A Week of Remembrance

October is breast cancer awareness month but it is also a month to bring awareness to pregnancy and infant loss.  As a mom that has lost identical twins at 9.5 weeks and most recently our son, Spencer, to LUTO in March 2014 it is comforting to find that there is a time that brings all of those that have experienced similar losses together for a time to remember our babies.  I have been involved in a group called Hope Mommies (hopemommies.org), thanks to the friend who introduced me to them, that wanted to raise awareness by doing a balloon releases all over.  I decided to ask my church if they would let us do this and to no surprise my church was more than willing to help host this event. On October 15th, National Pregnancy and Infant Loss Awareness Day, we gathered at the church to honor our children who have gone to be with our Heavenly Father, below are a few pictures from that event.  A special thank you to our pastor who spoke and prayed over all the mommies (and dads) that came out.  For all the mommies that joined me in remembering our little ones - Thank You!!  It is something I don't wish on anyone but it is comforting to know that I am not alone in this journey.  

 

Remembering my 3 babies - twins and Spencer

On October 15th, the same day as our church balloon release, I received a call that afternoon from the funeral home stating that Spencer's grave marker had been installed.  It was a very odd and coincidental that it was installed on this day of all days.  Of course my son and I drove out there shortly after that to go put flowers on it.  My eyes filled with tears when I saw it for the first time.  It was perfect.  Below are pictures for you to see it, my first son's name is removed for privacy.

On Friday, October 17th, Spencer's 7 month anniversary in Heaven, I was giving a devotion to my MOPS group.  I wasn't really thinking about the date back when I picked it that it would fall on his 7 month anniversary or that October 15th was the day to bring awareness to pregnancy and infant loss.  I knew that I wanted to incorporate a devotion from my MOPS international book that we received in the mail and to talk about Spencer - to say that God was working through me during this is truly an understatement.  My mother suggested that I put this on my blog for others to read so below is my devotion that I gave to my MOPS group.  Excuse any grammatical errors - I read this to them.    

Devotion: Courage to Be Broken 

My name is A. Nelson and I am a mother to 4 beautiful children - L who is 3.5 years old and my only living child.  I also have identical twins and most recently a son Spencer, that have all gone on to be with our Heavenly Father.  Other than a mom, I am a former high school teacher where I taught Resource Math, Algebra I, and Geometry.  I am an organizer for a mommy group and I also am the Membership and financial Coordinator for our MOPS group.

I wanted to read a verse to you that stuck out to me in a time of brokenness and a time that courage and bravery were not at the top of the list.  

It says in Psalm 38:8, 9, 15  "I am feeble and utterly crushed; I groan in anguish of heart. All my longings lie open before you, Lord; my sighing is not hidden from you. Lord, I wait for you; you will answer, Lord my God." 

We struggled for many years with fertility - my first pregnancy was identical twins (conceived through IVF), which later we found out I had miscarried at 9.5 weeks, the same year we did IVF again and I became pregnant with L.  Our world seemed perfect until we decided that we wanted to expand our family again.  So in August of 2013, I do another fertility treatment and we get pregnant again.  I remember praying to God and telling him if this was going to work out - great, but if there were other plans I would rather not be pregnant at all.  I didn’t want to go through another miscarriage and if having one child was what our family was supposed to be, then we would be ok with that.  

There is a devotion in your book you received from MOPS international called “Courage to be Broken” and the first part of this says, “Until you are broken, you don’t know what you’re made of.”  This hit home to me in so many ways.  I remember January 7, 2014 like it was yesterday - I was 20 weeks pregnant with our 2nd son, Spencer, and this was the day that my husband and I were told there was something wrong with his kidneys  - they didn’t look right and we were told to go downtown to a high risk doctor immediately.  It was a day of confusion, anger, frustration - you name it, I was feeling it.  This should have been a day of joy and excitement, but instead I am making phone calls to my family and friends to pray for us as tears roll down my face.  After 3 brutal days of testing and doctor consultations we learned on January 10th that Spencer had LUTO (lower urinary tract obstruction.)  To help you understand what LUTO is, Spencer was unable to pee in the womb, therefore, it was causing kidney failure, and he was not able to receive any fetal intervention to correct his blockage.  I remember falling a part after all the doctors and nurses left asking “Why” over and over.  I remember thinking that this was all a horrible nightmare and that I would wake up and it would be alright but of course that was wishful thinking.  Remember what I prayed for - not wanting to have another miscarriage - I don’t think anyone could have prepared me for this journey I was about to be on.  The next few weeks following we were now planning a funeral, memorial service, and picking out a grave marker - we should have been preparing for him to come home with us - washing clothes, putting the car seat in the car and decorating his room.  I remember asking God, don’t you remember what we discussed and now this, REALLY!!??  I was angry and wonder why would God give this to my child, why would He make us go through this, why - why - why!!??  I will tell you this, I know that God did not give LUTO to Spencer, we live in a sinful world.  However, God will use our brokenness  - it says in Jeremiah 29:11, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

    

I started a blog to keep family and friends updated on our journey with Spencer, which was very therapeutic for myself to write it down and not have to repeat it every time I saw someone.  I was introduced to a friend that had a similar issue with her daughter and we talked about what I would be dealing with over the next several weeks.  I remember asking her am I ever going to be able to say goodbye to him and be ok with all of this.  I asked her why she was so at peace with it all, she told me you will get there and you will understand.  I carried Spencer till I was 30 weeks, until his condition worsened and doctors told us it was time.  Spencer was born March 17th, 2014 (7 months ago today) at 12:34pm and lived a beautiful 31 minutes.  I can not explain to you how at peace I was with that day.  I remember putting on makeup that morning and fixing my hair telling everyone that I am going to look my best for him.  Saying goodbye and I will see you later to him wasn’t easy but knowing that I will see him again makes everything perfect.  I admit that I am not all put-together and I am broken - there is courage in saying this.  There is part of me that will always miss Spencer, but through God’s words, amazing friends, and family I will embrace my brokenness.  So for me today, my “Be you Bravely” is the Courage to tell my story and embrace my brokenness.  

As most of you know, October is the month of breast cancer awareness, but it is also a month to bring awareness to infant loss.  I challenge each of you to pray for all the mommies around you that might have struggled with miscarriage, still birth, or losing a child to a terminal condition.  Some moms may struggle with telling their story, so when they choose to talk to you about it, remember to listen.  We as moms never forget our children so try to remember the moms who have struggled with a loss - give those moms hugs when times might be tough for them as they remember their children.

As I close this out, I wanted to read you one last verse - "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."  Psalm 139:13-16

6 Months - Balloon Release

It is hard to imagine that 6 months ago (on September 17th) we welcomed Spencer into this world for 31 mins and then said our goodbyes and we will see you soon.  We as a family went to do our balloon release for Spencer and below are some photos that we took.  We had some great friends that joined us also in helping celebrate Spencer's 1/2 birthday in Heaven.  I am also attaching Spencer's heartbeat that I recorded the Thursday before I delivered him.  I had not shared this with anyone other than family and a few close friends till now.  I still love hearing it.

Remembering Spencer on Vacation

I am not sure how some families remember the ones that they have lost but I decided that when we, as a family, go on vacation anywhere that I want to remember Spencer.  Spencer may not be with us anymore but he is ALWAYS on my mind.  I had decided that wherever we go that I would write Spencer's name somewhere / somehow.  

In July this year my family went to Beaver's Bend where we rented a cabin for a few days so as I tried to think of a way to write his name and the place to write it I finally decided that I would write his name with rocks on the porch of our cabin.  

In September we were able to take a trip to Hawaii and, again, I found the perfect place to write Spencer's name to remember him there also.  

I love this picture of my first son looking at his brother's name wrote in the sand.

What do you do to remember the child(ren) you lost?

Long Overdue Update

It has been quite awhile since I have updated the blog, but wanted to catch everyone up on how our family is doing and information that we have found out since March 17th (Spencer's birthday), a day that forever changed our lives.  Our family is doing very well considering all that we have gone through.  Dad has been back to work, and in full swing of things again.  He is keeping busy, but we are enjoying time together as a family.  Big Brother finished school for the year in May and we enjoyed this summer poolside.  He is back in school again and is loving this year already.  He talks often of his baby brother Spencer, and it is so sweet to hear all the precious things he says about him (e.g. baby brother is with Jesus; when can we see baby brother again...).  He has done remarkably well with all that has gone on, and I am one lucky mama that he has understood it all so well for his age.    

Personally, I am healing well and finally getting back to myself.  Since the emergency surgery that I had after delivering Spencer, I had to take it incredibly easy.  I was actually on a weight limit for two months of only 10lbs, which was difficult, but we managed very well.  I went in for a check-up on May 1st hoping to get fully released from my doctor, but unfortunately since I had "MAJOR" trauma she asked that I hold off for 3 more weeks.  I was a bit down about it but understood that it wasn't just a c-section and another surgery, it was MAJOR and I needed to take care of myself.  So I went back to my doctor on May 22nd and I got the full release finally, but was told to listen to my body and rest when I needed.  A few weeks after getting fully released I started getting very tender again and went in to see the PNP there at the office.  She said everything looks great and it is nerves reconnecting, which is a good sign.  I feel blessed that it wasn't anything serious!!  

I had also been seeing my pulmonologist since I had been released from the hospital.  I could tell that my breathing was more difficult after my release from the hospital so they continued to monitor me.  My pulmonologist gave me an inhaler to take and then recommended me for an echo.  I have a heart murmur that he just wanted to make sure it wasn't something more since all of the trauma I had.  Results on my murmur were fine and said that I just need to listen to body.  I had also been released from this doctor and his final orders were to not come back to him - I PROMISE I WON'T!!

We also received information regarding the Chromosomal Micro-Array Analysis (CMA) that was done on Spencer.  Below is the information from our genetic counselor at TCH.  Unfortunately it did not give us the information we were hoping for, but were grateful in the information we receive regardless.  At this time, we are still not going to do any further genetic testing on us or our son, but know that if we decide this down the road, the option is there.  

CMA was performed on a skin sample collected at the time of your son’s birth. This was done to see if there was any deletion or duplication of chromosome material that could explain the diagnosis of LUTO and to inform future pregnancies. It was also to investigate whether there were any changes that could give us insight into the extra material seen on chromosome number 4 on the karyotype that was performed during your pregnancy. 

We discussed that the CMA results were normal and did not show any gains or losses of material that are associated with known genetic syndromes. Therefore, the CMA did not give us an explanation for the LUTO diagnosis. This makes it more likely that it occurred by chance and would not be likely to happen again in future pregnancies. However, this can also be frustrating news because it does not give us an answer for why this happened to your son. 

These new test results also did not give us any further information about the extra chromosome 4 material. When Baylor Medical Genetics Lab initially reported out that finding, they stated that it was suggestive of satellite DNA. As detailed in the previous letter, this is a type of DNA that is made of many repeating sequences of letters and is not involved in making proteins in the body. The fact that no medically relevant genes were found to be duplicated on the CMA makes it more likely that this extra material is in fact satellite DNA and would not be expected to have an effect on a person’s health. 

It may be that this extra material was inherited from a parent who also carries extra material on one copy of their number 4 chromosome, or it could be something that happened new for the first time in your son. We also discussed the possibility that it could have come about as a result of a balanced translocation in a parent becoming unbalanced in him. If you and your husband wanted to investigate this possibility further, it is possible to perform chromosome analysis on the two of you. As we discussed, the parental chromosome analysis is unlikely to give us an explanation for the LUTO diagnosis, but could clarify our assessment for future pregnancies and hopefully rule out a translocation. This is an optional test and is available at any time should you decide you want that information. 

Right before July 4th we received the final report of Spencer's autopsy.  Although this was very difficult to review, it was closer for us.  There was information that we did not know of our sweet Spencer, but then information that confirmed what we already knew.  I am inserting a small portion of the report below for you to read which summarizes the full 21 page report that we have.  Reading this might be difficult for some, as the words on paper really express the unfortunate circumstances that our sweet boy encountered.  These are snapshots of the actual pages we received and is broken up into two images.

Again, I want to thank everyone for their continued prayers for our family and all the support we received from everyone since March 17th.  We were and still are truly overwhelmed by it all and words can not express how much we appreciate everything.  I will do my best to update this blog just to let you know how our family is doing. 

"The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace."  Numbers 6: 24-26 

3 Months - Balloon Release

Two days ago was three months since our world forever changed with the birth of our second son, Spencer Alexander.  Although we miss him very much and think of him constantly we are comforted knowing that he is in heaven.  To celebrate his precious life we had with him here on earth a friend and I went to his graveside with the kiddos to do a balloon release in his memory.  Below are a few pictures I caught on my phone and wanted to share.
   

Big Brother did not want his picture taken since
he had just woke up from a brief nap in the car.  

Our balloon says -
Spencer,
We love you and miss you tons.  See you soon.
Love, Dad, Mom, & Big Brother

You can't tell, but Big Brother colored a picture for
his baby brother and we tied it to the green balloon.  

 

Pictures of Spencer

Thank you to Now I Lay Me Down to Sleep and their connection to our photographer Kathy.  Thank you Kathy for being a part of this special day and for your amazing talent that captured these most beautiful moments that we will treasure forever.  https://www.nowilaymedowntosleep.org http://www.dandkphotos.com

This was right before I went in to deliver Spencer.

Our first son getting to meet his baby brother for the first time.

This is by far one of my most favorite pictures of Spencer.  

Our family photo.

We sang Happy Birthday to Spencer since this was something we did when our first son was born.

Great picture that showed off his blondish red hair.