Thursday, April 28, 2011

An anniversary

Today is our anniversary.  Four years of marriage.
"Feels like longer," Mitch says before carefully watching my reaction and adding, "in a good way" to make sure I'm not mad. But I'm not. I agree. Four years is a lot and our four years have felt like even longer.

It's hard to believe that four years ago was our wedding day.  The pictures are so beautiful (of course I think so) and full of hope. That's what a wedding day is.  And we promised to be there for each other through everything...saying the words and of course thinking that it would all be mostly good.



Now I look at those treasured wedding pictures and count.  I count time just like I do for all of the photos that were taken of me before Miles was born and, though I avoid them, the select few that have been taken since he died. Our wedding photos--I count--two years, nine months later Miles will be born. Three years, one month, nineteen days later Miles will die. "How will this couple do it?" I wonder with tears in my eyes. They were naive, I know now; blissfully unaware anyway of both the unmatchable joy of their first son being born and having him here in the world and the heartbreaking pain of him dying.

There's a lot I didn't know that day. We were in love on our wedding day. But not like we are now. Now there's a greater love for each other, a shared love of our Sweet Miles, an unmatchable life-saving level of understanding--little gifts from our little guy.  

Friday, April 22, 2011

One day at a time

One day at a time.  That's how I got to be 30 weeks pregnant.

More specifically, at the end of each day, I take my prenatal vitamin...



And then I take a deep breath and think to myself, "That's one more day." And, yes, I use a pill keeper; when Miles was in the hospital, it was honestly just too difficult to remember whether or not I had taken my vitamin every night (and it would make me crazy because I wanted to be sure to be getting all the right nutrients for the breast milk I was pumping and freezing every day).  As little a thing as it was, it was too much for me to handle--which helps me to remember how normal we looked yet how barely-hanging-on we actually were. Now, it seems, I still need the pill keeper for my memory and sanity and to get me day to day.

So with every vitamin at the end of the day, that's one more day. And then every Monday I refill for the week. And that means one more week has passed. And that's how I got to be 30 weeks pregnant.

All that to simply say it's hard to look ahead too much. I go day by day. It took so much courage and hope to get pregnant with our second child. That I know. And I know too much about medicine and life now to believe that this baby's health and well-being is a given...to believe that everything will just work out. I am very hopeful and occasionally allow myself brief glimpses of my wildest day dreams--imagining that this baby will leave the hospital (just the exact moment of carrying her out of the door of the hospital brings a level of joy to my heart that I don't have to think beyond that) or imagining this baby at my sister's wedding in September. I smile when I think of how unbelievably wonderful that will be if that can happen for the baby girl and for us. But I'll never go back to being the pregnant woman who just believes that of course that will happen. That's sad, I know; but it's real.

Each day is its own wave of emotion. It boils down to two things: 1. grief over losing Miles, and now having a growing family that includes him but not in the way we want and dreamed of and 2. concern over this baby's health. The second part is very real and mostly results in me being (I would argue reasonably) neurotic, concerned, so happy that the 20-week ultrasound showed no heart problems (yet still knowing that only time will tell that she is completely healthy), and under the impression that this pregnancy has been the longest pregnancy imaginable. The first part--the missing Miles part--is the more significant one of course; it's the one that takes on different forms but that will be part of our lives forever. But we do our best to balance the joy and pain; because if we had waited until we were done grieving Miles' death, we would never have any more children. There is room in our hearts and our lives for both. One child does not replace the other; it gives me the rage when people give the impression that the arrival of this baby will be so wonderful that we'll no longer be in pain over losing Miles. They just don't know.  We are joyful, and we will be joyful when this baby girl arrives.  And we'll miss Miles.  We'll wish that we were introducing Miles to her, wish that we had both of our children with us.

10 weeks to go.  And I'll take it day by day.  It's emotional.  It all is now. And I know that it's worth it.

Thursday, April 21, 2011

Those were the good times

Those were the good times. We knew it then, but we really know it now.

Starting on April 17 last year, Miles' five weeks off the ventilator started. It wasn't all good (there were plenty of daily--hourly really--struggles with his health), but those were the good weeks with Miles.

We were able to hear Miles. We could finally hear his hiccups and hear his cries. We were able to scoop him up--yes, he still had the nasal canula and his broviac of medications--but without the breathing tube, we didn't have to be so careful. We could slide our arms under him and sway him, rocking him in our arms. It took no time to figure out this was what he LOVED...



And Miles didn't need as many sedation medications without the breathing tube.
So he was more awake, more alert, more Miles.

And I could no longer leave the hospital at night. Leaving the hospital at night, forcing myself to get in the elevator to go home and sleep, was practically impossible each time; it was nothing short of against nature to have to do that. It still makes me sick to my stomach.

So I stopped leaving. I moved in to 2C18 with Miles. I slept in the ridiculous sleep-chair in the back of Miles' room, learned to use Miles' boppy as a neck pillow, jumped up as soon as I heard Miles cry. I would stand by his bed, rock him on my arm for hours, then hold him while he slept--silently debating the should-I-just-keep-holding-him-so-he'll-keep-sleeping or should-I-possibly-risk-waking-him-up-by-putting-him-down?

Those are the times that I think of now when I think of us in the hospital. I think of us rocking him on our forearms until they felt like they would fall of and absolutely loving it. I think of me in Miles' dark room at night, standing by his bed in my sweatpants and socks, rocking Miles on my arm and singing to him--because that was what made him (and me) happy.

We knew those were good weeks at the time (though always believing that the really good days were still ahead, still just waiting to unfold at home). And now, well, we know those were the best times we had with Miles. Those days in the hospital were so stressful, torturous really, but they were the good times.

Wednesday, April 20, 2011

Winnie The Pooh

“If ever there is a tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart…I'll always be with you.”                                 ~Winnie The Pooh


For the record, this is the first time I've ever quoted Winnie The Pooh. It just seems like the thing to do though. A friend passed along the quote and all of a sudden I find myself a Pooh fan.


From the second Miles was born, the world changed for Mitch and me. Regardless of anything that happened after that moment, he was a love of our lives. It happened immediately and grew with each moment that we spent with him.


And I do think we'll always be together. Not in the way that I want. I would much prefer to have him here with me every day so don't go thinking I'm really putting a positive spin on things. There is no positive spin, no silver lining to losing Miles. The silver lining was Miles. That's it. There is no greater silver lining. 


What I do mean is that he's with me...not physically but spiritually I guess.  This I know: part of me went with him and part of him stayed with me. Just saying that sounds too fluffy or sentimental to me but that's not the way I mean it. I can envision two worlds--the one I'm in (in a very hazy way still at times) and the one that almost was. The one where Miles, Mitch, and me (and now the baby on the way) all are.  It's wishful thinking of course, but it almost happened, it should have happened--and I spend some of my time there. 


So we're "together" in this very bizarre way. It's not the way I would have wanted it for Miles and for us, it's not what I would have imagined my life would be. But it's good that Miles is always with me.

Monday, April 18, 2011

Being ready

I went to church yesterday for the first time in a very long time. For me, church has not been the most comfortable place to be since Miles died. Perhaps that's opposite of what most folks would expect. Church is supposed to be comforting, welcoming, all of that. But that's not how it feels to me. In church, people who are hurting or sad (or even in the process of going to hell and back basically) are sometimes briefly mentioned as if they are random people out there but certainly not one of us because all of us should just be so joyful that it couldn't possibly be one of us. It's hard because so many of the songs, the sermons, the prayers, the currents in general are of pure joy. And that's not how I feel. I do feel joy in a simple, daily kind of way. More than that, I feel joy that we had Miles, and I praise God for him and our four-and-a-half months with him. (In fact, my faith has grown many ways and perhaps that's a story for another day.) But it feels so fake to sit in church pretending that everything is hunky dory.  Because it's not. Simply put, I'm happy and I'm incredibly sad--all at once; I guess I just need both of those feelings to be recognized to be comfortable, whether it's with a relationship or with a church. And I know that the church is full of people who are hurting and have their own "hidden" concerns...so I'm not alone, but it seems like it and so I'd rather actually be at home alone than alone in the midst of people...

Still, I want church to be a part of a life.  So I went.

I sat with a friend who I hadn't seen for several months. At that time, I was about 20 weeks pregnant, and she had showed such joy that I was pregnant and had showed such compassion in listening to how difficult the pregnancy was emotionally since I was 1. heartbroken that we didn't have Miles and the new baby here (and pregnancy enhances that hurt rather than erasing it) and 2. a psycho mess with feeling like I had no control over the health of the new baby (and was giving away the microwave, not putting the computer on my lap, not getting pedicures, not taking more than one Lactaid a day, throwing a fit over the broken high efficiency lightbulb and the possibility of it leaking Mercury, and so on).

Now I was sitting next to her in church. That's when it happened. Suddenly I wasn't alone.

After telling me that I looked beautiful (clearly getting the conversation off to a great start) and chatting about general things that we had in common, she asked honestly, "Has this pregnancy gotten any easier?" It wasn't the terribly polite and fake conversation filler "How are you?" It was the real deal--the "How are things for you? What is it like to be you right now?" It was exactly the question that I long for people to care about, to ask about, to then sit and listen and not try to rush my answer or pretend like they already know or be scared of what wildly intimate response I might give.

And it caught me off guard.  For months, I have always been ready with my answer because I knew if someone opened the door just a little, I had to be ready to take advantage of it.  But with time, I realize that I must have given up waiting for people to ask me--because THAT is the thing that changes with time--with time, people think that the heartache is over, it's no longer important or appropriate to talk about Miles, and probably that we should be "over it."

So she asked. And I stumbled. And she waited. And it was wonderful.

Sunday, April 17, 2011

A Smile

Oh, the time warp.
It has been a whole year since the day that Miles first smiled. That's four seasons ago, 365 days ago, more than a lifetime on his time scale. Yet just a year ago he was here. Miles was here with us just a year ago.
Regardless of time, it's painful that he's gone. And it's joyful to see our sweet baby boy on the day he started smiling...

video

Subtitles, if needed: "Miles loves his new chair!" is what I say amid all of the laughter.
The laughter sounds good to me, in a bitter-sweet kind of way.  It makes me happy that, despite the stress of the PICU and the beeping of the machines, we were enjoying all of these joyful moments with Miles.