As I was going through my pictures, I discovered that the last photos I took of Nicholas were when I was trying to capture his smile:
We gave birth to twin babies July 18, 2007 only to discover a couple of months later that Nicholas had a fatal genetic disease called spinal muscular atrophy. He passed away November 27, 2007 and a week later his twin sister Olivia was diagnosed with the same disease. She passed away January 12, 2008. This is a memoir of their lives, as well as a place to share my journey through everything that has happened.
Wednesday, October 29, 2008
November
I recently took advantage of a Black's online sale on photo prints and made about 3 sets of pictures of Nicholas and Olivia. As I sat down today to date them and put them in order, it struck me that there are no pictures at all in the month of November.
I missed a whole month of Olivia's six-month life. Now, I know that I was at the hospital with Nicholas and that was just as important, but I remember thinking at the time, "I'll have the rest of Olivia's life to enjoy her and spend time with her...I don't know how long I have with Nicholas..."
I can't even say what I would have done if I knew then what I know now. How do you balance your time between two terminally ill children?
I missed a whole month of Olivia's six-month life. Now, I know that I was at the hospital with Nicholas and that was just as important, but I remember thinking at the time, "I'll have the rest of Olivia's life to enjoy her and spend time with her...I don't know how long I have with Nicholas..."
I can't even say what I would have done if I knew then what I know now. How do you balance your time between two terminally ill children?
Sunday, October 19, 2008
Going in Circles
I've been going around in circles. Even though I feel like I've moved into a new season in this grief journey, it doesn't mean that the ever-increasing signs of fall have not triggered the occasional grief storm of memories in this new season.
I remember Nicholas getting sicker and sicker. Taking him to the hospital in the middle of the night. Missing Sabrina's 5th birthday party. Not understanding what the doctors were trying to tell us in the Pediatric Intensive Care Unit. Being surprised that God actually took Nicholas and didn't heal him.
This is where my circling starts. If I know God to be good, and Jesus to be a Healer of "all who were brought before Him", then my logic follows that Nicholas and Olivia, who were brought before Him countless times in faith, should have been healed. I was expecting it, believing in it, putting all of my hope into it.
When they died, one by one, I shifted into needing to bring meaning to their lives by holding on to the goodness of God and how they fit into His plan. But, as time went by, and I felt safer asking God those big questions of "why?" and "how could You?", I realized I was mad that I couldn't understand how something like this could happen to someone who loves Him and seeks to serve Him.
But I keep coming back to God's goodness. Without the sovereign rule of an infinitely wise and loving Creator, life has no meaning. Without God, even a God that I can't understand, there is only despair. I can't live in a world where babies die for no reason. Even if I can't know why, at least I know there is a "why" that I will see in its entirety when I meet them on the other side.
I remember Nicholas getting sicker and sicker. Taking him to the hospital in the middle of the night. Missing Sabrina's 5th birthday party. Not understanding what the doctors were trying to tell us in the Pediatric Intensive Care Unit. Being surprised that God actually took Nicholas and didn't heal him.
This is where my circling starts. If I know God to be good, and Jesus to be a Healer of "all who were brought before Him", then my logic follows that Nicholas and Olivia, who were brought before Him countless times in faith, should have been healed. I was expecting it, believing in it, putting all of my hope into it.
When they died, one by one, I shifted into needing to bring meaning to their lives by holding on to the goodness of God and how they fit into His plan. But, as time went by, and I felt safer asking God those big questions of "why?" and "how could You?", I realized I was mad that I couldn't understand how something like this could happen to someone who loves Him and seeks to serve Him.
But I keep coming back to God's goodness. Without the sovereign rule of an infinitely wise and loving Creator, life has no meaning. Without God, even a God that I can't understand, there is only despair. I can't live in a world where babies die for no reason. Even if I can't know why, at least I know there is a "why" that I will see in its entirety when I meet them on the other side.
Thursday, October 9, 2008
Kieryn Hope Elizabeth
This little treasure is the newest addition to our circle of friends.
Kieryn Hope Elizabeth, we have waited a long time for you to come. We are so excited you are here! You came into being when all we could do was hold on to hope.
And you look so cute in Olivia's sleeper!
Tuesday, October 7, 2008
It's Not Denial Before Dancing...
You have turned for me my mourning into dancing;You have put off my sackcloth and clothed me with gladness...
Psalm 30:11 (NKJV)
I was uncomfortable with my last post. I don't really like to write about the darker things I struggle with, but I've committed to being real here. I don't use words like "jealousy" and "sorrow" lightly, because overall I want to emphasize how good God has been to us.
My friend Misty's comment on that post struck me with its simplicity. I love how she brings perspective into those places that I'm still seeing with my old self, the "me" before Nicholas & Olivia. I was sharing about how I don't want to be "that person", the one with the tragedy. And very clearly, she reminded me that in order to dance, you need to go through the mourning.
After all, she said, it's not denial before dancing.
So there it is. On the whole, I navigate life pretty well, thanks to the grace of God. I overflow with joy at meeting new babies. I love the abundance and mystery and miracle of a woman carrying new life. I also long for what I had, and while I walk this earth, will always carry sorrow for two precious lives ended before their time. I will not deny that.
But I will yield it back to my Father, and ask Him to make something beautiful out of it. That's where the dancing is.
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