Wednesday, May 9, 2012
Monday, May 7, 2012
Sunday, May 6, 2012
So maybe I'm almost done blogging. While my love for my Miles, my joy over his life, my pain for his loss are certainly not fading, maybe my days of writing are fading.
But I need to find the words. And so I will try one line a day.
One line a day. It will be easier, I think. The task of writing just one sentence is surely one I can tackle, I encourage myself. Yet, there it is again: if there's so much to say, the limit of only one line seems impossible. Surely it will only tell part of the story. But that is life at times, isn't it? Sharing snippets, making sense of one bit at a time. And the only way to get the whole story is to put all of them together, a lifetime of them, it seems.
My line today:
Elliott stands while clutching the couch, she laughs, she claps, she plops down to "read" her books, she sucks on all strings she can get her hands on, she takes my breath away and leaves me thinking: the days are long but the years are short.
Tuesday, February 28, 2012
So on today's walk a woman--with grown children she ended up telling me--commented on how cute Elliott was and then said, "Enjoy every minute...it just goes so fast."
She really just intended to be friendly. She was reminiscing about her babies. She was giving pretty true advice honestly.
"Ok," I said.
"You know nothing about me, and you really have no business saying that to me. No one knows that better than I do," I thought.
It was just a small encounter, and I'm not upset with her or anything like that. It got me thinking though. I do enjoy every minute with Elliott. Just like I enjoyed every minute with Miles. It's fair to say, however, that I do not enjoy it when Elliott is screaming before taking a nap, and that's ok, too. I'm beyond happy and beyond grateful for having her in my life, having her here in the world, but honestly "enjoying every minute" includes some really tough times (and it's completely possible to say "Oh my gosh, these are the exact kind of problems that I'm happy to have and I'm so happy and it stinks that she's screaming right now!"). This was true for Miles' life, too. I enjoyed every minute of having him here but was beyond upset when I had to leave his side or he had to have procedures or I didn't get to hold him when he was crying.
I have more than my fair share of perspective these days. It's something I would give back if I could, if it meant that I could have Miles instead of all this perspective. That's not the way that it works of course. So I have all this perspective, but I try not to say things like that to people. I guess I think it's not really all that helpful to spout out "helpful perspective" to people with "less perspective"...that's just not how it works. Everyone is trying to enjoy life simultaneously with just trying to survive it, I'm thinking. It's sort of like we all have this painful spot (for me it's the heartbreak of losing Miles for another person it's the heartbreak of not being able to conceive for someone else it's the heartache of not having a life partner for someone else it's yet another heartache). It's like we all have a personal sadness--and there's no comparing sadness...your own sadness is simply the greatest sadness there is no matter how compassionate you can be--and we manage the best we can with it. And if that's true, "enjoying every minute" is rather easy because you know how important every minute is yet it's also impossible to do because perspective simply doesn't take away the pain you--it's a hard road, that I know. I guess that having your eyes open to how beautiful every moment is can coincide with knowing how painful it is, too.
Wednesday, February 8, 2012
Before I became pregnant, I knew a bit about heart defects. A bit. I knew that my brother and his wife were pediatric cardiologists. I knew that some babies have heart problems. I knew that there were surgeons who did heart surgery on tiny baby hearts. I knew that there were success stories and heartbreaking stories--though now I can see that I didn't know what that actually meant.
I didn't know that heart defects are as common as they are in babies (1 out of every 100 born in the United States). I did not know that there are so many unknowns as to why heart defects happen. I did not know that so little money goes to researching congenital heart defects in comparison to other things.
I did not know that my baby would have a heart defect until all of a sudden he did. I did not know that Miles' heart defect--heterotaxy with a double outlet right ventricle defect (among other things) affecting approximately one in a million babies--would take his life.
It's congenital heart defect awareness week.
Monday, February 6, 2012
I focus on each day with her--drinking up the moments, delighting in her new laughs, giving her slightly dirty looks when she declares "da da" and nothing else, swaddling her tightly for her naps as soon as she rubs her eyes, sitting silently (she hunger strikes if I talk at all) in our usual chair for breastfeeding, calculating that I've now fed her over 1,400 times (no wonder it feels like it's the main thing we do), watching her roll across the room, feeding her spoonfuls of new foods that she scarfs down even while making faces at it, feeling like the best person in the world when she smiles so big when she sees me for the first time after a nap or from the car seat in the back seat.
There's no need to think too far down the road. Don't wish away right now, I know, I know it so well.
But now, when I see other little girls, I realize that Elliott will someday be a little girl, too.
At the mall, the girl scouts hawked their cookies. I felt compelled to buy them--and not because oh, my, goodness, can I possibly pass up thin mints--but because maybe Elliott will be a girl scout some day and, let it be known, everyone better buy cookies from her. And so I wonder, will Elliott want to be a girl scout? And then there's the little girls' section at the department store is full of short skirts and clothes that make me feel old. Will Elliott want to wear this garbage (and will her daddy throw a hissy fit?)?
Time will tell of course. But then I wonder about some questions that just don't have answers:
Will she feel like the oldest child in our family? Will she have the qualities of an oldest child?
And the most important questions, I realize:
Will she know how much we love her? Will she know how much we miss Miles AND how much happiness she brings us--will she know that both of those things can exist at the exact same time?
Yes, it was. And, yes, it is. It still is. It still is heartbreaking that Miles died. And both loving him and spending our days without him here are still (and will continue to be, I can be quite sure) daily parts of who I am and what I do. Miles' short life with us, his big impact on us, and our daily life of being always plus one is part of who we are. A significant part. A part at the heart of who we are now.
"All healed up now?" No, no, I'm not healing, I'm just dealing.
In truth, I can't stand the word "heal;" losing Miles is not something that heals. No amount of time or laughter or the endless new joy Elliott brings us changes the fact that Miles didn't get his chance at a long, full life and we didn't get that time with him either. Our child, our sweet fighting Miles is gone; it echoes in my heart. No, I'm not healing. I'm reluctant to use the word "deal" as well because it sounds rather flippant, but it's much closer to what I feel; I am coping, dealing, living with a broken heart. ("A Broken Heart Still Beats" is such a true, telling title of a loss book, in my humble opinion). Miles' death is something that happened in the past, but losing him, living without him here, loving him as the member of our family that he is--that's something we continue to do each day. His loss is something that we live with and isn't in the past and isn't something that heals.
Saturday, January 28, 2012
This photo was taken just a few hours after Miles was born. We had just learned that he had a serious heart defect; we knew he would be having heart surgery in just a few hours. We didn't know we would lose him. We didn't know that we'd be celebrating all his birthdays without him.
He should be here turning two with us today. It will never be right that he's not here for his birthdays. So that sorrow is there, and I won't pretend that it's not. But remembering the day he was born, that's a good thing. His birthday is a good day. The joy of welcoming him to the world and spending four and a half months with him and the joy of having him in our hearts always are all good things to celebrate today.
So today we'll eat angel food cake, read his birth story*, and lovingly admire all of his beautiful photos in his baby book. Happy birthday, Miles.
* * *
*Miles' Birth Story
Friday, January 27, 2012
That's me--I can't live with the unsettled feeling of dishes in the sink or an unmade bed. But I live with the unsettled feeling of something infinitely harder, something that actually matters, something that--at its essence--can only have a certain level of peace to it, it seems. Oh, my Miles. A mother in the world without one of her children...can there be a "settled" place there, can there be true peace in that soul? The peace, I've found, must be in coming to an understanding of sorts of how it is to not have my family together in this world, to have a sorrow that will be constant, to live with a joy that once was and has to be carried on. Inward peace without outward order--that's the person I have to be now.
Wednesday, January 25, 2012
It feels like I am here, living my life, doing the small things, taking in each day. Because the value of being present is a present from Miles. And it feels like I am somewhere else. I'm in the place where all of my children are.
It feels like the opposite of the reassurance, the relief, and the hope that should come with the phrase "This too shall pass." No, friend, it will not. Many difficulties, challenges, and sadnesses do pass. The death of my child--that is a loss, a heartbreak, a reality that does not pass.
That's what it feels like to live each day without Miles here.
I won't say that's what it feels like to live each day without Miles. Because I'm not living each day without him. I'm living each day without him here.
Tuesday, January 17, 2012
So that was the letter. Ultimately I know that I can "fix" nothing for these parents. The one thing that they want--their daughter healthy and in their arms--cannot be. Still I want so much to share with my friend what can help her since she asked...what am I forgetting...what else needs to be said? There's so much that I want for the world to know about being knowledgeable and compassionate when interacting with parents who have lost children...and now I feel that this letter needs to address everything! Ridiculous and way too loaded, I know, but it's like now that I have the chance, it's like words aren't enough.