Hold and take Simon home, dear Savior

Today will be a sad day, and many more difficult days will follow.  Last night, at 10:17 PM, Amy and I embraced one another, and Simon, as he left this world and was welcomed into Jesus' arms.  The experience of ushering Simon into Paradise was holy and beautiful.  An amazing song shuffled into our playlist as we watched Simon depart from us: "Tribute/ Agnus Dei."  I now hear a collective groan as we all morn the loss of an amazing, gorgeous and powerful life here on earth.  And the Holy Spirit groans on our behalf. "...The Spirit helps us in our weakness.  For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." (Romans 8:26)  As I write this, rain falls here in Kansas City, appropriately, as so many tears will fall from our faces today.

Simon's story is one of victory.  He beat the odds of his diagnosis and held on for exactly 7 days.  He gave us joy and he filled our home with his cries for a perfect week, plus 22 minutes.  At 9:55 PM last night Grandma Patty, Amy and I sang him happy birthday and congratulated him for making it so far.  It seems that 7 days and 22 minutes were far enough for Simon.

Simon's story is one of victory.  He has now achieved the ultimate victory over death.  Joy filled his sweet face last night as he set foot in the Kingdom of Heaven.  A stadium of angels cheered thunderous cheers for him as he ran to the arms of Jesus and embraced Him.  He is basking in a kind of love that his mommy and daddy never could have given him.  His new body feels no pain.  Fear does not exist in the New Heavens and the New Earth.  He is dancing and running through pristine green fields with all of our friends and relatives who surrendered to Christ, died and live eternally in Heaven.

Simon inspires us all.  He showed us what fight and power look like in a 4 lb. 15 oz. body.  Each moment with Simon was a gift.  Not a single second of the 6 days that we were able to spend with him at home received any planning.  We were pulling Teddy's newborn supplies out of storage in our basement and dusting them off with big smiles and full hearts just 6 days ago.

Two lessons that have been galvanized in my soul emerge to the forefront of my mind as I seek to process the last week.  We have consistently said that God's grace is sufficient for today and tomorrow will worry about itself.  When you live minute-to-minute and breath-to-breath, this is a reality not a philosophy or a concept.  The second, and somewhat related lesson is that our plans are not our own.  God's has a perfect design and a perfect plan for each one of us.  It might not line-up with our own plans, and that is why the theology of true surrender to Christ is so vital and important to sustaining hope beyond this life. (Matthew 6:25-34, Matthew 16:24-28, Isaiah 55:8-13)

We will hold a memorial to celebrate Simon as some point in two-to-three weeks.  Details on that will follow.

Shower Amy with love, as I will.  She inspires me more than anyone, as she consistently keeps saying, "I would do it all again."  I would too.  Pray for our marriage and for Teddy as we head into some turbulent waters.  Ask God to not grow weary of holding us close, as He has done so steadfastly throughout this entire journey.  We know Simon's story will live on, and we will continue to write about him, our family, our faith and this life for the years to come.  We are so happy to share this journey with each one of you.

We pray you experience grace upon grace, as we have, and understand that you are eternally the object of Jesus Christ's love.  Nothing you do or don't do can change that Truth.

By His Grace,



  1. Hi Adam and Amy,
    I am Shae's friend who lost my daughter Kate in November. I just want you both to know that I have been holding you all so close to my heart over the last week. I just saw your blog and I love to see so much joy in the middle of all of this heartache and loss. That's Jesus. Christ in you, the hope of glory. I praise him. I praise him that Simon is safe in the arms of our savior. I praise Him for holding you in the hours, days, and months to come. Pour out your heart to him ... His promises will hold you safe and secure no matter WHAT you are feeling. I love hearing what he is already showing you... grace upon grace.... every moment covered. That this world is not our home and his ways are not ours. You just understand these things in new ways now, don't you? So beautiful.
    Love you sweet sister and brother in Christ....
    Will continue to hold you in my prayers as long as God places you on my heart.....
    Kristi Swob and family

  2. Every day we have with the ones we love is a gift. I thank God that you were able to have the precious week that you had with Simon, and pray that He continues to bless your hearts as you release your sweet baby back to Him. ~sending much love your way, Tiersa and Clay and family

  3. My tears are flowing for you all. I am so proud of your faith through all this and the extravagant love you have poured out on Simon. That song is absolutely beautiful. What a cherished memory holder that song will be for the rest of your life. Throughout the Bible, the number 7 is significant - often symbolizing completeness, perfection, holiness. I think Our Lord is saying something through the way Simon lived exactly a week. I'm sorry for your loss and I will keep you in prayer.

  4. Adam, Amy and Teddy:

    We are holding you three extra close to our heart today. We pray that the memories of Simon's life will, with time, overcome the sadness and pain that have accompanied you as you journeyed this last week with him.

    Thinking of you during this difficult time and wishing you comfort and peace in the coming days.

    Sending love your way,
    Chris & Ashley Chambers

  5. All, Be not afraid for He will be with you always even to the end of the age. (paraphrase of Matthew 28:20; Isaiah 41:10). Prayers for you and Simon who is with his Father in paradise.

  6. my thoughts and prayers are with all of you.....I have followed your family's journey through my niece Ashley Dietz. simon inspired an army of the faithful as did his mommy and daddy. i read this and it seems fitting for simons short time with you.

    Don't cry because it is over....Smile because it happened......

    always believe and trust~~Belinda

  7. Simon has inspired me! What an amazing child! I know Jesus has made him feel perfect and he is living a beautiful life in the eternal kingdom. Brooke and I continue to pray for your entire family in that you continue to find strength each day. Your story is one of love and faith that has inspired us. Our hearts pour out for all of you and you will stay in our hearts.


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