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.
Tuesday, July 29, 2008
Foreigners and Aliens
Sometimes I think that losing a child is kind of like being abducted by aliens. You get sucked up into something that you NEVER wanted to see or know about, have things done to you that you NEVER wanted to have done, experienced things that someone should NEVER experience, then get dropped back in to "life as usual" here on Earth. Now you are someone who knows things, who has seen things, and live life looking through a different lens.
I am frequently reminded me of how I seem to have become an alien here on Earth and a citizen of another place that very few people understand. There are not many people who really want to know what's "out there", and I think that most would prefer not to be reminded that I've been abducted by aliens. Twice. Within a few months. They just don't know what to do with it.
Aunty Tricia
Sunday, July 27, 2008
Overwhelmed
These are the meanings of Nicholas' & Olivia's names engraved on a large piece of slate that is now placed in our garden. What this means to us is that they haven't been forgotten and never will be.
We had pink carnations for Olivia and tealight candles for Nicholas. For those of you who don't know the details of their memorial services, these were the items we chose to represent the beauty they brought into our lives the short time they were with us.
One of our good friends, who lived next door to us when I was pregnant with the twins, brought a strawberry plant each for Olivia and Nicholas, already bearing fruit. What a wonderful living reminder of the sweet things they brought into our lives:Friday, July 18, 2008
Tuesday, July 15, 2008
A blast from the past...
How about from this angle? If you look closely, you can actually see each twin on either side of my belly...Olivia on the right and out front, Nicholas on the left and farther in...
Birthday Preparations
A while back, I predicted that this milestone was going to be really difficult. Now that it's almost here, I'm surpised to find that at this point I'm pretty excited about it. We're having a party with our family and friends to remember them, and planning this party is something that I can actually do for them as their mom. I get to talk about them, and show others pictures of them. I can acknowledge that they really did live here with us for a time, and all within the comfort and support of those who love them too.
Wednesday, July 9, 2008
The Beauty of Grief
The beautiful thing is that it couldn't be avoided. Grieving was something I had to experience. And in the experience of it, I discovered that feeling my pain instead of suppressing it was the best thing for me. I had been afraid to feel any kind of negative or painful emotion because it felt out of control - I didn't want to go to a dark place I couldn't come back from.
Grief was the ultimate test. Here were painful emotions to big for me to suppress. There was no alternative - I had to enter into it and hope that I would emerge on the other side. And to my surprise, I did. I also discovered that when I acknowledge the sorrow and grief when it comes, feel it, and release it to God, I would feel better. Hopeful again.
That's something I never experienced before Nicholas and Olivia graced my life. I can honestly say that I am a happier person now. Yes, I carry great sorrow, but I also feel great joy. I love deeper, and get more excited about life. When I was not acknowledging my emotions, and actually trying to control them, I didn't feel much of anything.
Why do we avoid pain and grief? Because it's unpleasant. But maybe the unpleasantness is the signal that we have something we need to bring to Father to take care of. What I do know is that without knowing loss I could not know abundance. Without knowing pain I could not know pleasure. Without knowing grief I could not know joy.
Lord, I need Your grace...
Sometimes I don't know what to do with the sad memories, but You do.
I remember the desolation of looking up at Olivia's hospital room window as I left to go home for the evening. I remember weak cries and sweaty foreheads as my babies struggled to breathe. I remember limbs and muscles as limp as noodles. I remember the sound of the cough assist machine and the whooshing sound from Nicholas' BiPAP mask when it came loose. I remember how that mask made his little nose red and raw, too.
I remember standing helpless as a "medical 25" was called for Nicholas in the middle of the night - his tiny body surrounded by medical professionals trying to keep him alive. I remember when my babies would get too uncomfortable to be held. I remember asking for more and more morphine when Olivia was declining and in distress. I remember having to authorize and carry an "advanced care directive" (a "DNR") and a letter for the Medical Examiner & funeral home in case Olivia passed away outside of the hospital.
Oh Lord, I need Your grace...I don't know what to do with the sad memories, but You do. These are things that should not be part of a parent's experience, but You have promised to make beauty of my ashes, to turn my mourning into dancing, to give me double for my former trouble. Father, how grateful I am that I do not have to carry the burden of these memories on my own. I am trusting you to come and be my God of all comfort.
Friday, July 4, 2008
Mine!
if we were able to come to a place where we didn't feel entitled to everything we got from God, would we grieve the loss if He chose to take it away?
if we didn't feel that God owed us those things that we think we should have, would we grieve the loss if we never received them?
if we could live in a state of complete trust in our Creator's knowledge of the deep longings of our heart if we understood His desire and ability to fulfill them?
Wednesday, July 2, 2008
I would like to set you free today...
I would like to set you free today. You can just listen to me and you don't have to offer me anything. Really. I am well aware that "time heals all wounds", that my children "are in a better place", that I need to "keep on going".
I would like to set you free today. You do not need to take on my sorrow, nor are you accountable for my happiness. You can talk about my children - please, talk about my children! They are still my children whether they are here or not.
I would like to set you free today. I know you love me and it's hard for you to see me in pain. I want you to know today that God loves me like crazy and His grace covers all those things that you don't know how to respond to. Thank you for reaching out to me in the ways you know how.