He Always Knows Better

The three weeks between Simon’s passing and his memorial are pretty special days to us as a family.  It’s a time where Teddy, Adam and I gather together and enjoy time remembering, laughing, crying, and rejoicing for Simon and his life – it’s a time to spend just being together.  Where words can be shared, tears can be shed, or the house can be silent and we can just “be.” I am honored that I get to prepare and share some pretty intimate moments of my life, my family’s life and my son’s life with my extended family, friends, and even potentially strangers.  Now that Simon’s life on earth has been written, I have done a lot of reflecting on the footsteps that have gotten us to this point of the journey.  How scared I was of the unknown throughout this journey and what peace I found along the way in our Savior – especially when I laid my anxiety at his feet – and how freeing it is to do this!  I know we have never shared how we originally found out about Simon’s special needs and health problems.  Although we never intended to find out about potential abnormalities and genetic issues, we are thankful that we did. 

Before Adam and I were married I remember having discussions, maybe as a result of a specific question in our pre-marriage class, where we agreed that should God bless us with children we wouldn’t want to do any special testing on our babies in utero.  We agreed we wanted babies no matter what. 

On January 8, we had our typical 20 week ultrasound.  Adam and I have naively treated ultrasounds as a time where we could take a glimpse at our baby.  We only had one ultrasound with Teddy.  With baby #2, we had planned to have two.  It’s amazing to watch your baby wiggle, wave, suck their fingers and just remind you how much LIFE is inside.   We enjoyed the “typical” ultrasound and made certain to look away so we didn’t spoil the gender.  At the end of the ultrasound the tech grabbed the doctor I was seeing that day (who wasn’t my normal OB) and they both came back into the room – which seemed like pretty typical stuff.  The doctor performed her standard review of the baby.  At the end of her review, the tech and the doctor both agreed that the baby’s kidneys looked a little larger than they were supposed to be.  They assured us that we shouldn’t worry and they would set up a more detailed ultrasound for us in the coming week to look at the kidneys.  It didn’t feel great to hear that there could be some sort of issue with our baby’s health, but I tried not to be consumed by fear.  The doctor assured us this sort of thing happens often and they were just double-checking that everything was ok.  I was scheduled for a level 2 ultrasound a week later. 

Adam and I aren’t into googling medical stuff.  I think we both googled “enlarged kidneys” and basically didn’t find out much other than there are a lot of ultrasounds that incorrectly detected enlarged kidneys.  Neither one of us looked up a level 2 ultrasound.  I thought I’d go in for the scan, they’d review the baby’s kidney’s and tell me everything was fine, or it wasn’t, and we would cross that bridge at the appropriate time.  What I know now is that a level 2 ultrasound is a detailed scan of the baby’s anatomy – about 75 images of the baby from head to toe.  I took Teddy and Melody, Adam’s mom, with me to the level 2 ultrasound.  Melody and I were pretty excited to see the baby.  I was uneasy about doing another ultrasound and even spent time alone in tearful prayer outside of the doctor’s office before the ultrasound.  I realized after about 20 minutes into the scan, that this was far more intrusive and detailed than I realized.  With each click of the sonographer’s wand/transducer I was getting more and more upset.  I explained to her, and to my mother-in-law, that this was much more than I signed up for.  Adam and I never intended to look at every part of our baby’s body, in the womb, with a fine tooth comb.  The tech told me I could stop at any point.  Melody even encouraged me to take a break and maybe even call Adam.  I chose to stay since I was already this far in it.
After the detailed sonogram was complete (about 1.5 hours), she raised the lights and began to tell us that she was starting to see things that concerned her about our baby.  We then met with a nurse practitioner and spoke with the neonatologist, Dr. Lu, on the phone.  Dr. Lu explained that our baby had a cleft lip, cleft palate, polydactaly (extra digits – man do they need a new name for this, extra digits are WAY cute and deserve a cuter name!), and kidney hydronephrosis.  My head was spinning and tears were falling down my face.  I needed my husband badly.  I had only brought enough snacks and toys for about a 30 minute visit for Teddy – remember, I just thought we were checking the kidneys.   I was exhausted and felt like I couldn’t fully explain to Adam all I had learned and I asked Dr. Lu if he would meet with Adam and me to further explain what we had learned.  Dr. Lu was so kind and offered to meet with us the next afternoon.  I called Adam on the drive home and told him about our sweet baby.  I think God drove my car home that day, as I can barely remember the drive.

After a night of very little sleep, we headed into Dr. Lu’s office.  He was compassionate and thorough when speaking with us.  At the beginning of this meeting, my main focus was to learn about nursing and feeding our baby who had a cleft lip and palate.  I learned there were classes and lactation consultants that specialize in cleft lips/palates.  We learned a little more about each anomaly and were pretty much going to leave any more details and plans for after the baby was born.  No amnio.  No testing.  No more details needed to be known about this sweet child.  We knew enough.  However, right before our meeting concluded, I asked Dr. Lu to review the ultrasound scans images with Adam and me from the previous day.  He said, “Better yet, let’s just see the baby live and review through another ultrasound.”  We thought this was a great idea.  Dr. Lu and the sonogram tech, Anne, took a look at our sweet little boy.  Simon was in a perfect position for the doctor and Anne to see Simon’s brain.  He told us he was seeing holoprosencephaly (the brain failing to develop into two hemispheres) as well as another brain issue.  We found more additional digits and a few other issues which perfectly align with Trisomy 13.  Dr. Lu was so kind in his delivery of Simon’s additional anomalies.  While I could hardly believe what my ears were hearing, Adam and I knew what we wanted to do – we barely even had to discuss. 

God has guarded our marriage throughout this journey and this was yet another way he was showing us he was holding us close to him.  With one look at one another, we knew we wanted to go ahead and receive the amniocentesis to determine if Simon was carrying an extra 13th chromosome and also wanted to go ahead and confirm his gender.  We were learning quickly that our time with our baby would be limited. We chose to find out his gender so we could call him by his name and get to know him as best we could.

As we walked out of the hospital on January 16, Jesus had to be moving our legs and feet one in front of the other.  I felt a bit frozen.  Adam was holding me up and we wept so hard together.  We drove home and began to share what we had learned with our parents, siblings, and closest friends.  We needed prayer specifically from our inner circle. Friday, January 17 was the amnio – something this self-proclaimed “natural” momma never thought she’d do in her lifetime.  We prayed to God for answers from the amnio and that our baby wouldn’t feel an ounce of suffering (and I can assure you he felt no suffering, only love his entire life).  On Monday, January 20 at 12:30pm, we received the information that Simon did have an extra 13th chromosome in all of his cells.  The most exciting news came to us as well during that call as well…we were having a baby boy! 

Once we had confirmation that Simon had Trisomy 13, we decided it was best for our care to return to my regular OB and for this pregnancy to be treated as normally as possible.  We didn’t need any further tests, guesses or predictions of how or when Simon may enter our world.  We understood the basics about his challenges and knew the staggering statistics about Trisomy 13 babies and that was enough for us.   We just wanted to spend time with our little boy singing, dancing, and reading to him.  And telling him all about our family and our Savior, who he would meet sooner than mommy and daddy (lucky boy).   As we saw it, we were still having a baby with normal needs and normal desires. More than anything, Simon needed to feel and hear his mommy and daddy and that spoke love to him. 

While we never intended to find out any of this information about Simon, God knew better than us.  He always does.  God was, and is, so amazing with his timing.  He slowly revealed Simon’s health challenges to us little-by-little.  I can remember Him speaking to me along the way – don’t be afraid, Amy, pour out your worries and fears to Me.  As we have shared before, verses from Isaiah 55 have very much spoken to us.   

Isaiah 55:8-9
“For my thought are not your thoughts.  Neither are your ways my ways,” declares the Lord.  “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts.”

God continuously reminded us to place all trust and hope in Him.  Not to try to make sense of this.  We allowed Him to work through Simon and we have seen more fruit produced than we could’ve ever asked for.  Thank you, God.  And as we continue to walk this journey, as I believe it will never be “over”, we are looking further into Isaiah 55 verses 10-12.  I believe we are living out these verses right now!!!  This does deserve three exclamation points – because it DOES excite me!

Isaiah 55:10-12
“For as the rain and the snow come down from heaven and do not return there but water the earth,
making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth;  it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.  For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing and all the trees of the field shall clap their hands.

Yes, Lord!  You continue to give us your living water.  You are showing us where you want us to go.  You have filled us – we do not feel empty.  Simon has touched so many, Lord.  Thank you!  And now, we go out in JOY and peace, singing your words and clapping our hands in worship and praise.  We truly look forward to praising you at Simon’s memorial.  We welcome and ask you to be present, Lord, with us during the service.  Please be with our pastor, Bill, as he prepares his message, with our worship pastor, John, as he prepares the band with special songs we have selected to celebrate Simon, with our friend, Jose, as he prepares his welcome, and with Adam and me as we prepare our addresses.  Be with those who are traveling form near and far and with those who aren’t able to celebrate with us.  Cover this celebration in light, love, remembering Simon and words that honor and please you ~Amen.

Just feeling like sharing a video of Simon. 

YouTube Link to Simon Video:  http://youtu.be/OnpX_eAscKU


Our Most-Read Posts

It wasn't supposed to be this way

Hold and take Simon home, dear Savior

Thomas Job Balentine