I never once asked God why He gave us Luke...

...even though it's a common question in times of struggle. Why is this happening to me? Why do we have to suffer? Why does God bring these trials? None of these questions came to mind as we learned of Luke's needs and cared for his life. There was never a moment in which I doubted that God had brought this child into our lives for His glory and purpose. I was so grateful that He gave me that trust during all of the difficulty. In contrast to this trust I understood in Luke's life, I have felt such painful doubt now that our son is gone.

Nearly every day in the months following his death, I cried out to God, "WHY did you see fit to take Luke from us?!" The calming faith I experienced over the previous year was not gone, but it was certainly overwhelmed by a wave of frustration. There were days I feel such ANGER. We saw the trajectory of our lives and felt the rightness of it. Our family was living with purpose and direction and wholeness. And suddenly that was completely ripped apart.

I began this blog months ago, and as I typed, I was hit with conviction (as I had been many times) that Luke's life was not sustainable. His body was not meant for length of days. Science told us he was born with imperfections that current medicine could not overcome. But I always felt that science didn't know enough about genes yet to truly understand Luke's prognosis, and so we hoped for great things. And though his life was not comfortable, I am always reminded of how he fought and forgave and smiled. It was easy to forget his struggles as he gazed at you and grinned. I think that every time I sit down to write, I mention this thought. It is absolutely pervasive.

Luke lived up to his name, Light, in every possible way.

In the morning, when we woke from our disjointed sleep, Luke's smile would quite often be seen before the sunrise. During his long days at the hospital, where weariness abounds, his face would shine and bring that dose of energy needed to endure the next hours. When the new direction of our life seemed confusing and difficult, all we had to consider was how we would best love Luke, and our   path was made clear.

In the last year, there has been no clear path. In fact, I have felt more that the path was completely gone, and we were being asked to sit a while. Sitting, waiting, unknown purpose...my enemies. Almost immediately after Luke's death, I began doing contract work again. In September, I accepted a part-time job back at UT and relished the distraction. As it turns out, September was one of my most difficult months because I neglected to take time to mourn and accept the pain that I felt. Instead, I tried pushing it down and covering it up. In October, we learned we were pregnant, carrying a child that would be due the same time Luke was. For the next week, I cried daily as I tried to process what I would mean to carry another child through the same seasons and hope for some different outcome. By the time we were ready to share the news with our family, we had lost the baby to miscarriage. What a strange experience to feel such sadness and relief at the same time.

Yet is that not all I have battled with in this last year? Though I feel excruciating loss at not holding Luke in my arms anymore, I am also struck with relief that his pain is gone. My son was hurting and is now living without pain. To beg him to be with me on earth again would be to ask him to suffer again. No amount of smiles from his chubby cheeks could hide the evidence that his life was fraught with struggle. Yet while I am truly thankful that he lives without limits now, I am also jealous to be with him.

At least since high school, I have known with deep understanding that our souls are not created to stay on this earth. God has created a paradise unlike anything our imaginations can conjure, and He has sent his own Son to be a ransom for us and return us to Him. Since Luke's death, two ideas have buried into my heart. The first is that I serve a God who knows intimately what it means to be separated from his child. He has watched his innocent son suffer and die. He knows my pain and anguish, and He alone knows the reason we must experience this. The second idea that I grapple with continually is that our lives here are merely a stepping stone to eternity. There is a line in a song that says, "My lips will praise oh King of Love, who sealed my heart for realms above." Each time I sing that song, I know that because Luke is in heaven, a piece of my heart is planted there. It makes me all the more anxious to join him.

But that will have to wait. Perhaps for a very long time.

So what now? We are in this waiting, sitting, seemingly purposeless time. There is still no clear path, though we have jobs, projects, activities, and trips on the horizon. We even have the blessing of expecting our third child in late summer. (This is a joy we prayed specifically for: that we would know the gift of another child before this day in January.) There is still this sense of needed to know our purpose, what God is preparing us for through this time and how we are to be used to bring Him joy and glory. We don't really know. So we continue to pray.

Our first, and only, family picture. My brother-in-law took this and we didn't realize it existed until a couple months ago, when he sent us a load of photos. I cried in the middle of my shared office as I saw this picture and rejoiced that we had this rare beautiful capture of our family of four.

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Luke's heart stopped beating some time after midnight in the very early morning of January 20th, 2015. As we gathered around his bed, with a huge team of doctors and nurses performing CPR and trying to revive him, John and I looked at one another and decided together that we needed to stop. In a matter of minutes, the team had cleaned his body of the probes, IVs, and leads and removed the large machines that had occupied the room for the last hours. Luke was in my arms once again, nestled on my shoulder with a weight I will never be able to forget. We wrapped him in the blanket I had sewn for him before his birth, and I kissed every place on his head I could reach. We took turns holding him and taking some pictures and a child life specialist brought materials to take his hand and footprints to create some keepsakes for us. We even cut the tiny little lock of hair that he had grown and saved it. I could have held him in that room for many more hours and walking out of that hospital room was a most unnatural and disturbing act.

So here were are, one year past. I'm not sure if we as a family will honor January 20th as "the day of Luke's death."  Today we will have a picnic lunch in the Healing Garden at Dell Children's and just make some space for our little son. Our dear friends will bring us dinner tonight and stay as long as we like. I think that this day also feels like a time to celebrate the faithfulness of our family, friends and our Lord for walking beside us. John and I are aware that as dark as this year has been and continues to be, we are thankful for a faithful Father who has sustained our trust in Him and given us patience in this period of waiting.  I am reminded as I reread these blogs that God has taught us a lifetime of lessons in the last two years. We pray that our lives continue to reflect what we have learned. We pray always that Luke's impact only grows stronger with time and that we honor our son with our love for his Heavenly Father.

For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake. For God, who said, "Let LIGHT shine out of darkness", has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
                                                                                                                      2 Corinthians 4: 5-6