At 6:30 pm on Thursday, July 28, I heard one of the most beautiful and long anticipated sounds to ever fall upon my ears... the soft cry of Sadie Robin Johnson. I had gone in for a routine ultrasound and exam and was taken in for an emergency c-section, because I was dilated to 4. We saw Sadie for just a moment before they whisked her away to the NICU. Within the first couple of days, they drained her kidney and began examining her heart. When she was 3 days old, her cardiologist came in to tell us that there was a new concern with her heart. We were expecting her to have open heart surgery due to her coarctation, but that was now the least of the doctors concerns. She was found to have Hypoplastic left heart sydrome, which basically means that the left side of her heart was underdeveloped. On Wednesday August 3, we were taken into a room with about 7 specialists and medical personnel and told that Sadie's heart was inoperable because of her Turner's and her kidney issues. There was nothing they could do. There was a particular medicine that would sustain her so that we could have a few days with her. I can't tell you the pain and grief of that moment. My thoughts were a tornado swirling through my head, ripping out my heart as they went.
We have spent the last two weeks loving and holding our little Sadie. On Friday August 12, Sadie was taken off of her heart medication. We aren't sure how long the Lord will allow us to have her, but we trust that every moment of her life rests in His hands.
The last two and a half weeks have been the hardest of my life. There have been long days of sobbing and days of feeling completely numb. I have been exhausted and at times have wanted to just run and hide. There have been moments that I didn't know how I was going to make it through and moments when I honestly didn't want to make it through. And though, even as I sit and type this and as Sean sits rocking Sadie in his arms not knowing how much time we will have with her, I can still declare that the Lord is good. I have seen His Hand in even the darkest moments. Obviously, the pain is not over, and probably never will be this side of heaven. But when I look into little Sadie's eyes and see what a gift He has given us in her, I cannot deny the Lord's love and grace in our lives. She is the most beautiful thing I have ever seen. And it is not only her eyes and cheeks and shoulders and lips that make her so beautiful... but God's purpose in her life that makes her so radiant.... God's sanctifying grace in my life and in Sean's life......as well as the lives of those around us. There are stories to be told throughout eternity of what has happened in these few weeks, as well as the months building up to this time. God has breathed upon us. I have many, many times agreed with Job when he said, "Though He slay me, I will yet serve Him". I am bound to Him, I know that I would have nothing without Him. I would not have Sadie, Sean, or Isaiah..... I would not have joy or peace or comfort... but most of all I would not have Christ, I would not have Life.
The day that I sat in that dreary room and they told us there was nothing that could be done for Sadie, a quote came to mind. At the end of the new Pride and Prejudice when Lizzy is talking with her father about her betrothal, her father sat crying and said, " I could not part with you, my dear Lizzy, for anyone less worthy." Oh how worthy is the Lamb who was slain! How worthy is He of our all, even if it breaks our hearts, even if it feels as though it is ripping us into pieces. Does the Father not know what we endure? Did He not only watch His Son being murdered, but He Himself design every moment up until that final blow that His own Hand delivered? And was this not all done, on my behalf? How can I then withhold my all from Him? He knows my sorrow and every tear. In the midst of such searing pain, He prayed, "Not my will, but Thine be done." There are moments that I am unable to pray this prayer aloud and moments when I must ask for Help for my heart to align with His. But I am bound to Him. I feel like Peter when he said, "But Lord where can I go, when you have the words of Life?" Where can I run? Where can I go? But to the One who orchestrates my pain and my comfort? I know many would argue that He does not orchestrate our pain. But I rest in the fact that He does.... He has designed it to sanctify and conform me into the image of Christ. How could I bear the thought that my pain is just random, that it is not a sovereign and merciful God that has ordained it for my good and for His glory? Yes, death is a result of the fall and of sin... yet my God reigns. Would I dare to say that Sadie's life and death are by chance? No, All things are in His Hands. He created Sadie perfectly by His own Hand. Within her heart is no defect, it was not poorly made, but was purposefully constructed. Every moment that I am able to hold her in my arms is a gift from my loving Lord. Even in the midst of such grief and pain, I would never choose comfort over these blessed moments of knowing my daughter and knowing my God. He is worthy, not only of my life, but of hers.
We have spent the last two weeks loving and holding our little Sadie. On Friday August 12, Sadie was taken off of her heart medication. We aren't sure how long the Lord will allow us to have her, but we trust that every moment of her life rests in His hands.
The last two and a half weeks have been the hardest of my life. There have been long days of sobbing and days of feeling completely numb. I have been exhausted and at times have wanted to just run and hide. There have been moments that I didn't know how I was going to make it through and moments when I honestly didn't want to make it through. And though, even as I sit and type this and as Sean sits rocking Sadie in his arms not knowing how much time we will have with her, I can still declare that the Lord is good. I have seen His Hand in even the darkest moments. Obviously, the pain is not over, and probably never will be this side of heaven. But when I look into little Sadie's eyes and see what a gift He has given us in her, I cannot deny the Lord's love and grace in our lives. She is the most beautiful thing I have ever seen. And it is not only her eyes and cheeks and shoulders and lips that make her so beautiful... but God's purpose in her life that makes her so radiant.... God's sanctifying grace in my life and in Sean's life......as well as the lives of those around us. There are stories to be told throughout eternity of what has happened in these few weeks, as well as the months building up to this time. God has breathed upon us. I have many, many times agreed with Job when he said, "Though He slay me, I will yet serve Him". I am bound to Him, I know that I would have nothing without Him. I would not have Sadie, Sean, or Isaiah..... I would not have joy or peace or comfort... but most of all I would not have Christ, I would not have Life.
The day that I sat in that dreary room and they told us there was nothing that could be done for Sadie, a quote came to mind. At the end of the new Pride and Prejudice when Lizzy is talking with her father about her betrothal, her father sat crying and said, " I could not part with you, my dear Lizzy, for anyone less worthy." Oh how worthy is the Lamb who was slain! How worthy is He of our all, even if it breaks our hearts, even if it feels as though it is ripping us into pieces. Does the Father not know what we endure? Did He not only watch His Son being murdered, but He Himself design every moment up until that final blow that His own Hand delivered? And was this not all done, on my behalf? How can I then withhold my all from Him? He knows my sorrow and every tear. In the midst of such searing pain, He prayed, "Not my will, but Thine be done." There are moments that I am unable to pray this prayer aloud and moments when I must ask for Help for my heart to align with His. But I am bound to Him. I feel like Peter when he said, "But Lord where can I go, when you have the words of Life?" Where can I run? Where can I go? But to the One who orchestrates my pain and my comfort? I know many would argue that He does not orchestrate our pain. But I rest in the fact that He does.... He has designed it to sanctify and conform me into the image of Christ. How could I bear the thought that my pain is just random, that it is not a sovereign and merciful God that has ordained it for my good and for His glory? Yes, death is a result of the fall and of sin... yet my God reigns. Would I dare to say that Sadie's life and death are by chance? No, All things are in His Hands. He created Sadie perfectly by His own Hand. Within her heart is no defect, it was not poorly made, but was purposefully constructed. Every moment that I am able to hold her in my arms is a gift from my loving Lord. Even in the midst of such grief and pain, I would never choose comfort over these blessed moments of knowing my daughter and knowing my God. He is worthy, not only of my life, but of hers.
