This is not what I ordered!

Our last earthly kisses placed on the head of our precious daughter Sophie Elise 733 days ago.  She was 2 yrs 7 mths old.  Sophie was diagnosed with Williams Syndrome, a 1 in 20,000; rare, genetic syndrome that took our family by storm.  Williams Syndrome is very complex multi-layered syndrome, kinda like an onion and every time we’d peel back a layer, another tear-jerking layer was underneath.

From the day Sophie was born she was in pain and suffering.  However, Sophie’s pain and suffering was not visible to the average onlooker.  Sophie depicted the essence of  joy, determination, courage, love, and patience in a very profound way.  To interact with her was a stark contrast of her painful reality.  As her Mom I watched her life of pain privately unfold before me. Behind the scenes, Sophie endured many surgeries and diagnostic testing, she was always being poked and prodded by medical professionals.  It was her last surgery shown in the photo above; open-heart surgery in which God relocated Sophie from Earth to Heaven.

A Holy Moment…only God holds the matters of  life and death in His hands.

Knowing this truth, didn’t make walking out of DUKE Children’s Hospital without the legs of Sophie wrapped around my hip, any easier.  This was not what we, my husband and I had prayed for or envisioned.  However, I felt God’s Mercy and Grace in a way that I had never experienced before and I was so grateful.  Grateful?? really?? why??  because HE was near.  I knew it because I didn’t pass out, while Drs and Nurses tried to resuscitate Sophie after she arrested.  I didn’t throw up after Sophie’s body was dressed and taken away.  And I knew it because my legs carried me out of the Ped’s Cardiac ICU to our car as if I had some strength in them.  The supernatural strength of God was manifesting itself inside my heart, mind and body as my husband and I experienced our worst nightmare here on earth.

In conjunction with what God was doing in and through me; my attention was drawn to what He was doing for Sophie.  To be absent from the body is to be present with the Lord immediately flooded my mind!  Sophie’s alive and in no more pain.  I was grateful Sophie was no longer suffering with Williams Syndrome.  I knew that we would see her again in heaven because of Jesus!  Sophie had joined with the angels, she was in the presence of the Lord God Almighty, she had received the gift of eternal life.  Sophie’s not dead she’s alive!  rejoice and then…

weep….After my husband and I drove to our hotel….. I cried, but it was for my own broken heart because life as our family of 4 knew it was going to change. We lived 3 hours away from DUKE in a Military town. We were too exhausted to make the drive at 5 am, it wasn’t safe.  We needed a couple of hours of rest. Our 5 year old daughter, Abby was there with Grammy awaiting our arrival with her baby sister in tow, things were about to change.  This change left my heart beating out of my chest.  The how’s and the what-if’s flooded my mind.  Change.. that I never wanted or prayed for has come.

It’s now been 733 days since that moment in time, that truth is shocking to polar dip shocking.

As I start this new blog, I am in this place of remembrance.  733 days: remembering; walking forward, looking back, everyday knowing, Jesus loves me, heaven is real, Sophie’s with Him and so are other members of my family, which I will introduce you to one step at a time.  And even knowing these truths and the promises of God, walking this road is hard, excruciating, breathtaking and even paralyzing.  It’s also been exhilarating, supernaturally awakening and miraculous.  All these emotions together… It’s like a big scrambled egg mixture somedays and I am not a huge fan of scrambled eggs!!  But non-the-less this is my story, like all those onion layers I would love to share them all with you.

Our family’s recipe for change has begun to mix.  It has to… you can’t have something like this happen and stay the same.  I do feel at times like my heart has been pureed, placed in the blender of affliction to be poured out making an intense new flavor that’s being added to an entirely unknown recipe.  A dish that I never ordered!  I have been served a new flavor through earthly death and dying that I have never tasted before in my entire life.  It’s an uncomfortable and awkward combination on my plate of faith, trust and love for God, that embodies bittersweetness.  On occasion, it causes me to scream, “My God, My God why have you forsaken me?” and it leads me to question my devotion to Him.  But, I find myself  utterly in need of Him, relying on Him for my very next bite and swallow.  It sounds a bit dramatic but if you are a parent, having to bury a child is your worst nightmare, it’s every parent’s worst nightmare and I have just done the unthinkable.

How do I survive this? How do I progress in a forward motion? My only answer right now is, progress is in tiny measurements of change.  I am now presented with these very complex new flavors, ingredients include dying to my self, my will and my heart, and at the same time being made Alive.  Alive to God’s self, God’s will, God’s purpose, God’s calling, God’s promises and God’s heart in a way that can only be understood as, supernatural.  Dead to my flesh and Alive in my Spirit all at the same time;  just like He did for Sophie.  Big huge bold changes…not my specialty.  This specialty, is not what I ordered, not what I prayed for, not what I wanted and I didn’t put it on the menu!

But, in tiny measurements, I am coming to a place of tasting and seeing that the Lord really is good, because as I remember; 733 days …. HIS footprints are so clearly evident.  He is carrying us, our entire family through His plan for our lives.  And He continues to show us that He has not forsaken us.  He’s blending all these complex ingredients together and I am think I am developing new tastebuds.  I am starting to feel exhilarated by His creativity and fearlessness.

I hope you will join me in my ever changing journey of faith.  If we’re traveling similar paths, or tasting similar recipes my hope is that we can help encourage each other, that it’s really going to be ok. By the grace and love of God we can receive His new creations and find our purpose in them.  I’ll share my recipes and you share yours.

39 responses to “This is not what I ordered!

  1. I love you my friend and it is because of the journey you have been on and shared with us along the way that my faith remains strong because I have seen the hand of God on the lives of you and your family in the midst of your pain and suffering, and I will be forever indebted to you for being faithful to Jesus and allowing me to see His mighty love

  2. I lost my son with Williams Syndrome 1 year ago. I can relate to you completely. However, I am finding it hard to get back to church as it too painful still.

    • Jennifer,
      would it surprise you to know that I often sit in the way back row and cry through most of the services? have you heard that verse, God catches every tear and stores them up in a bottle? BOY I tell you I’d like to see my bottle it’s got to be an ocean up in heaven.

      you don’t need to go inside a church to be in touch with God. He draws near to those with broken hearts where ever they are. be gracious with yourself and one day you may find your heart and legs strong enough to go carry you inside.

      remember baby steps of change. God is a gentle-man. He won’t force you or make you feel guilty the enemy does that. just be still…no need to “do” anything just rest in His peace and love for you. (((hugs)))

  3. You are truly an amazing person willing to share your story my son has Williams and I could not imagine what you are going through

  4. You are one strong woman Kim.Your story is such an eye opener because you are right if we have God in our hearts we can go through anything with him I was always told that God wont give you more than you can handle and I think losein a child is as bad as it gets so hold strong to God keep in your heart and shine for him.I’m so sorry for your lose of a very special young girl. I have a grandson who has williams and he’s a joy to my heart he’s now 7 but looks about 3 but he’s such a joy.

  5. Though I haven’t got any experience with Williams Syndrome, I know how it feels to walk out of the hospital, for the last time, without your child. My son Everett died in December 2007 after having multiple open heart surgeries to correct a complicatied collection of congenital heart defects. He didn’t cope with the surgeries well, and simply just never recovered, he was 20 days old, and was survived by his identical twin brother and older sister. I was furious with God at the time, who I believed either allowed my baby to die, or was powerless to help us, and I walked away from him entirely. But in the depts of grief, just a few months later, I could feel Him calling me back to HIm, and when I listened, and when I let down my defenses, I felt God’s love, grace, and comfort in a way I never expected.

    Thank you for sharing your story, and may God continue to use you and bless you!


  6. Thank you for sharing Kimi. God’s grace in the darkest moment of a parents life (two months ago) is truly amazing…. I speak from experience still very raw….. a dish I never ordered either but one that will forever change and reshape me.

    ‎God will take the tears of my yesterday and transform them into the miracles of my tomorrow. He will restore to me in all abundance what I have lost. He will cause all things, even the painful events of my past, to work together for my good. (Rom. 8:28)

    It is difficult to comprehend the ‘all’ or the ‘how’, but I trust that He will.

  7. Kimi,

    You trully are a woman of incredible faith and love. Your blog will be such a blessing for others who have or at sometime in the future will go through a “Sophie experience” Be assured iof this… God’s plan for Sophie here on the earth is still unfolding through your family..and your love for others. ..He will use your precious Sophie to help others.

    Already has and it will continue…

    This may be a part of the very reason He created her and gave her to you knowing what you would do….in the first place. May His perfect will be mainfested and done..

    Praying this blog will bless many especially you as you write it….Love always

    Blessings Sis!

    Uncle Mark

    • Thank you Uncle Mark!!

      I really do pray that anything that God leads me to write will encourage others who may have walked similar paths.

      It’s challenging to recall such events but I think there is such a potential to reach God’s healing power and purpose in the devastation for all of us with broken hearts.

      Love you and Aunt Carla!

  8. Kimi,
    You are a true gift from God! I cried reading your blog just as i did of the passing of Sophie! I have and always will feel as though Sophie is part of our family! We prayed for your family before Sophie’s surgery and as we still do pray for your family! You have touched my heart in so many ways! Tyler and i remember Sophie every year at Christmas time by our memory tree! Its a tree we put up of our family or friends that have passed.. On this tree there is a ornament that represents that person who has passed… Sophie has two on our tree that Tyler and i have picked out! They are precious little angels! We love you Kimi! Thank you for all you do for us ! HUGS!! xooxo

  9. I thank God for giving me the chance to be a part of your family’s life. Sophie and Abby will always have a place in my heart for the time I spent with each of them. The time Sophie let me rock her to sleep and read books over and over and over again I will never forget. Thank you Kimi for a place in your family and giving me the chance to love your daughters.

    • October 18 what an ENORMOUS date of significance for us Miss Tory. bEARTH-day for your baby girl and Eternal life day for mine. God has such plans in store for you and your family. To weave such an intricate thread through our lives is astonishing!!! And what renders me completely still is that HE planned all this before the foundations of time! He knows the beginning from the end. Unbelievable really.

      We love you too! So thankful for you and miss cici. We wouldn’t have made it without you both!

      Forever love…

    • We love you Miss Cici!!
      All our hearts have been woven together for a divine purpose. You were one of the few that saw Soph’s pain and suffering and also witnessed her continuous fountain of joy all at the same time. Extraordinary.
      Forever love,

  10. Kimi you are a cracked vessel leaking God’s presence everywhere you go my friend. I knew a bit of your story but your testimony just brings it past home and into the dugout – saying i cannot imagine is a cheap cliche-ish response but it is all i can muster after reading this last night. One of the most distressing ideas to my heart for you is “Sophie’s pain and suffering was not visible to the average onlooker”. Wow that is really walking through that valley. Thank you so much for surrendering your life as a living sacrifice – what a wonderful fruitful offering your sweet girl has brought and will bring to many lives through you and your husband. You are a true blessing to me. Thank you for sharing. Keep going, keep writing – its helping us!

    • oh no baseball analogies…i’m a Tigers fan by default. 🙂 I am in trouble here.

      words fail to express my gratitude for your words and encouragement regarding this new phase of our journey. Your ability to highlight those parts of our story that resonant most in my mind and heart on a daily and sometimes minute to minute basis, bares witness to the Spirit that we share. I will continue to dance and worship in the furnace of affliction UNTIL…..I shine forth as pure gold. not sure when that moment in time will be but I pray His Grace and Mercy be upon me and my family and that His love flows to us and through us. Sophie was radiant as she walked the earth. He makes “Beautiful Things.”

      I look forward to exchanging our recipes.

    • awomanforhim,

      thank you for sharing my experience with me, I am certainly trying not to be a picky eater during this process somethings are an acquired taste.
      Abundant blessings over you and your loved ones.

  11. Thank you for such an uplifting testimony of how God comforts our hearts in times of such sorrow. He is truly our Lord. He carries us when we can’t even stand on our own. He is with us always with us and brings us through the most difficult times. I have a friend who has a child with Williams Syndrome. He is most delightful to be around. After heart surgery several months ago, he seems to be doing well at this time. I pray for you as you continue to comfort others through your witness as to how good God is. God bless your family and you as you continue your ministry of comforting others.

    • Anonymous,
      I LOVE to hear when a WS baby, toddler, child or adult if living a glorious life on earth! They exhibit such JOY as you watch them words can not describe and their LOVE is unmatched to any other creation. Please give big hugs and kisses to your friend’s son the next time you see him, it will be paid back to you 1,000 fold without condition.

      God bless you and thank you for your encouragement!

  12. Kimi….Its your nail tech, Danielle from A Moments Peace! I am just now getting around to your blog page! I love the pictures of Sophie! I KNOW you will see your angel one sweet day! I love and pray for you to continue on with comfort!Isaiah 40:31
    but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

    • God’s timing is perfect my sweet Danielle! Our time together and how we encouraged one another in love and peace, unity and likemindedness!
      Isaiah 40:31 was Sophie’s “life” verse! There were 2 worship songs she asked for repeatedly, You never let Go and Everlasting God, which is the song derived from Isaiah 40:31.
      I awoke this morning longing for Sophie and watching a video I have of her dancing to Everlasting God.
      Isaiah 40:31 Such an amazing reminder God will supply everything that we could possibly need as long as we “hope in Him”
      HE doesn’t ask for much and HE gives us everything!
      stay in touch my friend! Please let me know how I can come alongside you!
      Windows of heaven blessing be showered upon you and your family!

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  15. The sting of loss is like no other…finding a new normal is taken in tiny steps most days…and then looking back you are surprised that moving forward has occurred. Honoring the loss, learning a new level of His mercies are new every morning… Sharing your story…is so powerful… thank you… May His peace and grace be upon you every day as you see beauty from ashes and her life speaks of Him to reach others…seeing that it is ok to be raw and broken yet healing and hope abounds…

    • Thank you so much Danielle. I really appreciate you taking the time to read this part of our story! Time is precious and I don’t take it for granted in anyway! We do hope to shine lights on all we have experienced and learned from. The hope of heaven and our family reunion keeps us focused on eternal things for sure. Xoxo

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