June

And now I know. Yes. June will be painful.

Last year, we medically transported Miles from Chapel Hill, North Carolina to Ann Arbor, Michigan at the end of May after almost 4 months in the UNC PICU. We went to Ann Arbor in the hopes that one of the top pediatric cardiothoracic surgeons in the country would be able to help our Miles. Miles' complete heart repair operation happened on June 1, 2010.

So there it is. June. June 1. That's the day that they came to the waiting room after Miles had been in surgery for hours; that's the day they told us, "It's rocky down there." And we sat and waited, crying, waiting, envisioning Miles fighting his fight. That's the day that the heart repair ended up going "well," they said...but that's the day that Miles wasn't able to come off the bypass machine.  That's the day that Miles had to be supported by ECMO--the baby heart bypass machine that took Miles' blood and oxygenated it, doing the work of the heart, before giving his blood back to him.
That's the night that Mitch and I went in at 2 am to see Miles after surgery. There he was, our sweet Miles, tough and beautiful amid all the chaos. Despite all of the pain medications, that's the night that Miles wiggled his little hand and raised his arm a little bit when he heard his daddy say, "Good job, little man. I'm proud of you."

We still had hope. He just needed time to recover from surgery and then he would get off ECMO, we hoped. For days, Miles continued fighting, kept working on his purple paci, tolerated yet another heart surgery, peeked his eyes open at us. Looking back, of course, this was the time that everything fell apart.  All the way to June 16.

And so June is painful. Miles went through so much, so much, so much to not get to be here now. It will never be right.

The worst thing is still happening

Previously--in my former life I could say--bad things seemed to be fleeting.  If something bad happened, often it went away eventually.
Certainly, obviously, that is not how it feels with losing a child.
The worst thing happened on June 16, 2010 when Miles died.  And the worst thing continues to be happening each day--he's not here.  He's not here today.  So the worst thing continues to be happening each day. With time, that doesn't change--I just "get used" to how that pain feels, incorporating it in who I am, how I live.

Every day is happy yet hard in its own way.
Yesterday, I saw a friend's little boy who I know was born just a few weeks after Miles.  I looked at him, and he looked at me. "That's how big Miles should be," I thought. "That's how skeptically Miles should be staring at a stranger." I smiled. And then later I cried.  And a few thoughts come to mind...

One is an epitaph but the sentiment applies to me, too...

"Step softly, a dream lies buried here."

Now Miles is in my heart and in who I am as a mother, a person, a spirit. And there's so much joy in having had him for the short time that we did. And the pain of the rest of his life unlived is right there, right under the surface for me, waiting to bubble over in tears.

And one from the bible (Philippians 1:3)...

"I thank my God for every remembrance of you."

Yes, these moments each day are painful. Yet there Miles is.  He's there in those moments.  And I feel so much love for him.