Wednesday, November 23, 2005
While Saturday
the 26th is the calendar anniversary of Max's passing, we will forever
feel the weight of his loss today, the day before Thanksgiving. At this
time of reflection and giving thanks, we are compelled to measure the
depth of his loss with the joy of the memories he created in his short
time with us. Margaret asked me the other day if I thought he forgave
us for all that happened to him. Nothing was his choice, of course, all
decisions were our own. And while I believe Max never grew old enough
to cast blame, I too hope that when the time comes to see him again, he will understand we only
wanted the very best for him.
The second year has been harder in many ways than the first. The first
year is shock: "I can't believe this is the way it is." The
second year is just the opposite: "This IS the way it is." The
reality hurts more than the disbelief. We have found ways to push away
the sorrow, often burying ourselves in house projects or just focusing
completely on Grace. But this time of year (known quite seriously as "Grief
Week" around here) puts the emotions front and center. We are put
back in his room, back on 4A, back at the Ronald McDonald House, back
at the funeral parlor, back in our house alone, without him.
Our lives manage, day by day, but
there are moments, sometimes only for a few minutes or two, where it is
clear that no one else can really imagine what we're going through. For
every kind gesture where someone mentions his name, there are far more
parents meeting us for the first time who ask us if Grace is our only
child. Yes and no, we tell them. We had another, but he passed away. She's
the "only child," the only child left. "Oh my God",
they say. "I had no idea." One never knows the private grief
of another, and while they can not imagine our pain, from our perspective,
we can not imagine their good fortune. And that opens the door to what
is fair. There are parents unable to have children. Surely this is unfair.
Perhaps they are jealous of the joy we have in our daughter. When they
see us out with our beautiful girl do they feel the way we do when we
see a big sister help her Mom with her baby brother?
Grace continues to be our light,
our glowing shining light. While no one wants to read me complaining about
what is fair or not, the truth is we are faced with a reality that makes
us ask the question every single day. Grace wants to know why she can't
have a sister. She wants to know why we don't just have another baby.
She understands the genetics, and she would never wish suffering on anyone,
but she doesn't understand the inequities of not being given the same
thing that all of her friends have been given. We should be happy with
what we have. But that would be so much easier if what we have was what
we had, but it's what we have left.
Faith? Should that get us up
and out the door? Perhaps. I am jealous of the true believers, those whose
faith is blind. I am jealous of their peace. But I have a hard time reconciling
a benevolent God with a wife in so much pain and a daughter so lonely.
"God must have had a place for him" they say. What place is
better than in his mother's arms? Or next to his sister, laughing on the
floor? "He's not sick anymore," they say. Well why was he sick
at all? Even the priest at his funeral had to admit that there is no explanation
for so much suffering in a soul so pure. Two years ago this week there
was a tube that was pulling up blood and the lining of his intestines
while dialysis machines cycled his blood and his skin scabbed over. And
yet I haven't given up on heaven, if only because I won't let myself.
It's the only part of faith worth hanging onto, the part that predicts
future reunion.
So we send our daughter to
public school, happy that she doesn't have to believe in something that
doesn't have all the answers, while at the same time admitting that neither
do we. How should we act? How should people act around us? We've seen
people change when they hear "our news." Soon after Grace started
kindergarten I received a call from the school social worker. I asked
him about how to deal with delivering our news to other parents. He warned
me about becoming part of a "pity party." He warned me of a
kind of group reaction of shared gossip, under the guise of shared sympathy.
He warned me that just as quickly as people will attach themselves to
us, they will leave us. We have seen this on many levels, often times
choosing to not share our grief or our story. Maybe that's why so many
people seem to think we must be "over it." Far fewer people
checked on us this year. Maybe it's because we haven't been updating (who's
still reading?) or maybe it's because people have moved on.
There is no timetable for grief.
We will never be "over" our son's death. But we will move forward.
I am so very proud today to be with my wife and daughter and to have a
future with them. Pain this deep has destroyed marriages and/or has rendered
one or both parents unable to take care of their children. But we are
as strong as anyone can be in our situation. That doesn't always make
us easy to be around. But we are buoyed by our love for each other, by
the knowledge that there is goodness in the world, by the small feats
(getting out of bed every day) that when added up are in fact great accomplishments.
I am proud that when called to speak about our son at his funeral we both
were able to speak so proudly. But I'm even more proud that 2 years later
we still all climb in bed at night to read stories.
Grace is deserving of an amazing
update all about her, but this day is for Max, and I've vented long enough.
So I will end this note with
lyrics from a Mason Jennings song that's been playing on our "painting
stereo"
If this darkness came from
light/then light can come from darkness, I guess
Happy Thanksgiving,
Margaret, Mike and Grace