"Enjoy every minute"

There's nothing like carrying a 22 pound baby strapped to your chest. Seriously, I love it. Every day, Elliott and I go for an afternoon walk. She rides in the front carrier facing forward--it's the one that pre-baby I found absolutely hilarious...it always struck me as funny that the baby is just stuck there with arms and legs dangling. Now, however (like many things that immediately changed once it's me who was the parent as opposed to the person on the sidelines), I love it. It's one of the greatest inventions of all time, and I love having a way of going for a walk without a stroller and without my arms falling off (this is what happens when I hold her for longer than 5 minutes these days). I love how close she is. I love it.

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.

I am the mother of a heart baby

I am the mother of a heart baby. And that's when you really start caring about congenital heart defects--when it's your child.

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.

She brings us happiness, there is no question

I wonder what life will be like for Elliott.

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?

Not healing, just dealing

"You've been through so much. It must have been so difficult."

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.