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.
Monday, March 31, 2008
Tough Slogging
Thursday, March 27, 2008
Epilogue
The last time I wrote about our testimony, I left off at Olivia's death. But our story doesn't end there. Since then there an outpouring of love has continued to grace our family. We have received generous gifts of financial support, gifts of prayer and emotional support, gifts of time with family and friends.
Where does the "closure to the work" come? That's where we struggle. How do you close a work as precious as new life? Where does the story come to a natural end? In the book of Matthew, Jesus said
"And no one puts new wine into old wineskins. For the old skins would burst from the pressure, spilling the wine and ruining the skins. New wine is stored in new wineskins so that both are preserved."
That's how I feel. Like new wine. I have been ripped from the vine, crushed, pressed, and left to ferment. And the old life, the one before our twins, doesn't seem to fit right anymore. I guess the epilogue to my testimony is that I wait expectantly for new wineskins.
Tuesday, March 25, 2008
Jesus Wept
Monday, March 24, 2008
Together Still
Thank God for Sabrina. She prepared for Easter dinner as the party it should be. She wanted streamers and hats and decorations and cake and balloons. Being the precious only surviving child she is, we usually indulge her in these kinds of things. OK, we didn't have streamers and party hats and decorations but we did have cake and balloons. Sabrina wanted to let the balloons go for Nicholas and Olivia to have. It was an idea from her grandma in Kelowna so she could connect with her brother and sister at their funerals. And now I think it's going to become a ritual of our family celebrations.
We let go 5 brightly colored balloons on that beautiful Spring evening. And do you know what? Those balloons all floated away together. They stayed together and played together in a bunch until we couldn't see them anymore.
We are all together still.
Time Travel
Like taking the twins out for a walk in the stroller on a sunny spring day.
I've decided that time travel is not the really cool experience that our culture holds it up to be. I fight to live in the present and appreciate it for the beautiful gift it is. (pun fully intended)
Wednesday, March 19, 2008
8 Months Old
Are they 8 months old where they are now? What do they look like? Who are the people in their lives that they recognize? Do they know their names as Nicholas and Olivia or has the Father given them new names?
I hope He has included the names we gave them too.
Monday, March 17, 2008
Having it All
Sunday, March 16, 2008
Life as Paradox
We are fertile but cannot conceive more children.
We can smile and laugh but carry deep sorrow.
We are grateful for what we do have and long for what we don't have.
We are moving forward but cannot help looking behind.
We live on this earth but can see into Heaven.
Friday, March 7, 2008
Perspective
Wednesday, March 5, 2008
Psalm 27:13-14
Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord.
Monday, March 3, 2008
Psalm 27:4
Sunday, March 2, 2008
Thank You
Why this means so much to me is that I think it signifies that you are honoring Nicholas and Olivia by reading their story and what I have learned from their short, precious lives. A few weeks ago, I couldn't find them on Google no matter what I searched by.
Thank you, my friends.
Tears
Sharing something as vulnerable as tears is really hard for me. When sharing my story I have tried to hold my tears back because my throat closes up and I lose my voice. However, someone I know who is very caring and wise recently reassured me that my tears are my voice too.
Longing
Does grieving get worse before it gets better? I think you can ride your body's natural shock response for quite a while, especially if you keep yourself busy. For a time I think your brain protects you from the reality of what has happened. But the more time passes, and your children aren't back home where they should be, the more real it becomes.
Grief
You see, I have no idea what's behind that door. My imagination whispers to me that it must be a portal to a hell that I would never want to explore. Common sense tells me that I need to march right on in there and deal with it, head-on. Popular culture is an enabler and tells me to own the door and carry it around with me as a constant reminder of the tragedy that is a part of my life.
I've walked with the Father closely enough to know that I can dismiss these voices. He takes me by the hand and tells me that I don't have to go in there without Him.
Saturday, March 1, 2008
Testimony - Chapter 5
We came home from the hospital with Olivia late Tuesday afternoon. We went back to the hospital the very next morning. Olivia's cold had progressed to the point where she was having a very hard time breathing on her own. Again, when we arrived at Children's Hospital Emergency, we were taken right in. Olivia was put on oxygen to make her more comfortable. We waited quietly in our little room in Emergency for most of the day until a bed could be made ready for her in PSCU. This was the same ward that Nicholas was in before he died.
Our walk into the Pediatric Special Care Unit with Olivia was desolate. It felt like some kind of awful deja vu. The staff had been kind enough to make sure we were not in the same room that Nicholas had. I think they were just as shocked as we were. We were welcomed warmly with hugs and offers of whatever we needed to make ourselves comfortable. All of this had happened so quickly, that I wasn't sure how long Olivia would actually be with us. I didn't know what to think, what to pray for, what to do. But thank God, we were in a safe place. We were well-supported and well-loved. I stayed with Olivia at the hospital for the next few nights, and to our surprise, she recovered from her cold. However, she continued to weaken at a rapid rate. It was like someone pulled the plug on her muscle tone. It was almost all gone within a couple of weeks of diagnosis.
She was so sweet and so beautiful. I would walk into her room, and she would be lying quietly in her crib, looking out the window or at her toys. It seemed that the weaker she became the more peaceful she became. I'm so grateful for how much the staff at PSCU loved on her. They told me that they held her a lot when I wasn't around, and personally I think they could hardly wait for me to leave so they could play with her (which I liked to hear). We prepared to have her home on passes from the hospital by Christmas. Our house was outfitted with all kinds of medical equipment and we had to become brave enough to take her out of the safety of the hospital. Even though she was expected to pass away soon, we didn't want it to happen due to any kind of incident that was avoidable. Life settled into a kind of rhythm. I would go to the hospital in the morning, pick up Olivia, and bring her home for the day. Then I would bring her back for overnight monitoring and care at the hospital. We wondered how long this living-between-two-worlds would last. It was really hard on Sabrina and on our family, because when I wasn't at the hospital, I was caring for Olivia at home.
I noticed that Olivia looked like she was coming down with something in early January. Call it mother's intuition, or whatever you will, but I knew she was not 100%. I wondered which virus would finally be the one that she could not recover from. After realizing that I could not manage a terminally ill child in the hospital and a healthy child who needed love and attention at home, I asked my mom to come back again for a while. That was a really hard thing to do. I know that sounds dumb, but I couldn't believe I was still in such a desperate place of need. It sure was good timing, though. Just after I talked to my mom, I headed over to the hospital and discovered Olivia was quite sick. And they also had to transfer her to the CH5 ward because they needed her bed in PSCU for a patient with specialized needs. Everything was happening at once. Our doctor from Palliative Care wasn't sure if Livvie was going to make it through the night. We started her on morphine to make her comfortable. Olivia then leveled off to a plateau where she was better again for little while. That's how the next few days went. She would get worse, we would increase her meds, she would plateau, each time a little lower than before.
We of course prayed for her healing, prayed for a miracle, prayed for strength. I knew - and still know - that God could turn this thing around and present Livvie to us, strong and healthy. But I think that God was preparing me deep in my heart for the possibility that the outcome we wanted was probably not going to happen. Watching and waiting for your child to die is a strange place to be. It's strange in that no matter what is going on in your little hospital room, life is going on around you. It was also comforting. Having the world stop just for you is way too much pressure.
Olivia worsened to the point that I called Corrie to come join us at the hospital in the middle of the night. I'm so grateful for the vigilant support of the Palliative Care team, because we at least have the consolation that Olivia was comfortable and not in distress. Livvie got paler and paler and her breathing became irregular. Corrie and I took turns holding her close and telling her all the things we wanted her to hear before she left us. Olivia took a long look at her daddy and breathed her last breath in his arms at 7:00 in the morning of January 12, 2008.