24.8.13

AUGUST 24, 2012.

This summer has been full of anniversaries for Lauren. She's oblivious to them and is satisfied with jumping, exploring the world upside down and shrieking with delight when she is excited about something. July 31st was an exciting anniversary - Lauren's Heart Rebirthday. D.R.E.A.M. B. The day that her heart started to get healthy. Then there was the anniversary of her having her first surgery, the anniversary of her heart starting to beat again and the anniversary of her being taken off of ECMO. But today, August 24th, is the hardest anniversary for me. I can still remember the day so clearly. 

Matt and I had had some concerns about Lauren after she was sent home from her first surgery. She started to have fitful nights and she would cry during the day. Like all of her other symptoms, this sort of behaviour is typical baby behaviour... but not for Lauren. Even today, she can fall face first into the ground and she will cry for a sum total of 20 seconds before she has gotten herself back together, wiped the blood off her nose and is off on her next adventure. As a baby, she didn't cry hard unless something was wrong with her heart. Unfortunately, without the tools in our house to look into her chest, we couldn't do much. 

On August 24th we took Lauren to a second followup appointment. On her first one, two days earlier, they had noticed that one of her major vessels in her heart was getting pinched off, making the blood move through really quickly, like when you pinch a hose. That would be fine if it didn't also mean that the pressure in the blood behind the pinch increased and her heart had to push harder to get the blood around. This appointment showed that it had gotten worse. Much worse. Suddenly we were sitting in the ICU again. Lauren's CT scan kept getting bumped later and later, she wasn't allowed to eat because of it and she hadn't eaten all day. She was crying in a way that broke my heart. Her little mouth would latch onto my arm, my neck, my cheek, anything to try to get some milk. In that moment, I couldn't give her the one thing that she needed, the one thing that only I could give her. It broke my heart to have to turn away from my little girl. 

Finally around 4pm, she was taken in. The CT room was directly across the hallway from the ICU waiting room so we went in there to wait. I closed myself in the small corner room to pump and after only a few minutes, the alarms went off. That piercing noise split right through my heart and settled itself into my brain. No, I thought, no. Matt knocked on the door and said so calmly, "Don't freak out, but Lauren's heart has stopped again. They are in there working on her." I still don't know how he managed to be so calm for me when I know he was reeling inside. Nurses and doctors were running in and out of the ICU, the ECMO machine, breathing support and paddles came hurtling down the hallway and I sat there in the doorway of the waiting room, staring out across the hallway at the room that held my little girl and all of the people who were fighting to keep her here in this world. The nurses who had come to know and love Lauren had tears in their eyes as we all willed her alive and doubted our ability to keep her here. They kept glancing at me as I sat in vigil. One nurse closed the door, thinking that it would be less traumatic for us if we weren't able to see the commotion just feet away from us, but after less than a minute, I couldn't handle it and I threw the door open again and sat myself down, resting my head on the cool metal doorway. I knew that I couldn't do anything for Lauren by sitting there, but there was no way I was leaving her alone. 

Then, miraculously, for a minute the alarm stopped. They had gotten her back... until they tried to move her little body again and it sent her heart in a tailspin yet again. The fight was on for a second time. Dr. Campbell, Lauren's surgeon, came to us and told us to say goodbye because she was going into surgery as soon as her heart was going again. It was in that moment that my biggest fear hit me. Did God heal her so that we could have this one final week with her? 

During Lauren's first surgery and recovery, I was so afraid but I was also convinced of the miracles that were going to happen to her. And they happened. Her healing was so much faster and so much better than we could have ever imagined. This time, I didn't know if she would be healed.

To go through it again without that same hope was the most exhausting thing that I've ever experienced. I can remember many times, trying to pray and having nothing to say. Words had failed me because all I could hear was the way that my soul was wailing. To pray in such brokenness was the hardest thing I've ever done. I felt no comfort, words of hope or uplifting thoughts. Everything felt so dark. Lauren came through the surgery and wasn't on ECMO but all I saw was the way she was suffering. She had recovered after her first surgery but now she was struggling. Her heart was so weak, she couldn't breathe by herself and she had a look of terror. How do you explain to a six month old that it was safe to close her eyes even though the last time that she did it, she woke up in such pain? How do you tell her that this pain is because we were trying to help her? No amount of hugging or touching or singing or talking could take that away. And I wanted nothing more than to keep her from pain, like any parent would. 

In the middle of my despair, I doubted in the promise that God had made to us that Lauren would be healed. During Lauren's first surgery, we had heard clearly, right from the beginning, promises that she would be healed. People had visions of her healing, others heard words or verses. We had both. But this time, there was so much silence. I never once thought that God wasn't there, I just didn't know what he was doing. I knew he was there, crying alone with us. I knew he heard my heart as it lay broken, but I didn't know if he would fix it. And dealing with that doubt is one of the hardest things that I've had to do this year. I have felt such guilt for my doubt. I knew that God was there, and I knew that he was with us, but I didn't know if he had taken away his promise. But God's promises don't change. 

A year later, I can see the fulfillment of his promise in Lauren and the way she is able to run around like any other child. At the time, my entire being ached for Lauren and that blocked everything else out. Watching her as she struggled to recover cut deep into me. Knowing that this surgery changed her and made her afraid, killed me. She had been such a happy child and now she was terrified. However, even though I couldn't see it, God's promise for Lauren was still his word. And his word doesn't change. 

We got to experience miraculous healing and we got to experience hard healing. Now, looking back, I choose to say that we got to experience these things and both of them have been a blessing to us. The miraculous healing changed us, we saw the power of the Lord, the power of prayer and the amazing support system that we had filled with people who loved us and loved our daughter. The healing that Lauren struggled through also changed us. Our level of understanding of suffering and empathy for others with sick kids increased exponentially. Our dedication to Lauren and her healing changed us as a family because we chose to cling to one another in a time when it would have been so easy to push away and be alone. Our willingness to submit to God withstood an extreme challenge and, even though we didn't know what the outcome would be, we knew that the best thing that we could do was hand Lauren over to the Lord. 

August 24th, 2012 was one of those days where I learned the most about myself. I am a mother who will not give up on her child. I am a woman who cries out to the Lord. I am a wife who is blessed with a loving and praying husband. On that day last year, my world collapsed and I didn't know if I would get it back. Today, by the grace of God, my world is filled with diapers, bath time and family dinners. Today, just like last year, God's promise of healing for Lauren is just as real as it was a year ago. Today, I am humbled by the blessings that I have received. 

1 comment:

  1. Amanda, your words continue to amaze and challenge me. Both your description of what you went through and your choice to put your faith in God in the midst of such darkness and doubt. I think that's the hardest. I haven't written sooner because, although very moved by your words, I wasn't sure what to say. I praise God that you are changing diapers, have a girl shrieking in her enjoyment of life and family dinners together.

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