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 me..like 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.