6/1/08 - During communion at church this
morning while reflecting upon Christ's sacrifice on the cross, I asked
myself. "Would I be willing to sacrifice my life in that same way for
someone else? Sacrifice and suffer willingly for another human
being? . . . No, that's too much to bear. . . . .Well, what about
Sammy? Would I have done it for Sammy? . . . Yes, I would have done
anything for him. . . . Most parents would do the same thing for their
child, wouldn't they? It's only natural, right? . . . Can you even
imagine a parent being forced to do that for their child? . . . Of
course, God did it for His child . . . Oh wait, that child is ME!"
After
listening to my thoughts, I have a feeling that God leaned over close
to Sammy, nudged him with His elbow, rolled His eyes and said, "Well,
duh!"
6/6/08 - In all of the stress and craziness of planning for the HPE
conference, some very good things have come out of it. Today, I talked
on the phone with seven different HPE moms representing the states of
Illinois, Michigan, Ohio, Indiana, South Dakota, and Oklahoma. I love
talking with my HPE peeps! In planning for the conference, I also have
had the opportunity to talk with several of Sammy's doctors who are
involved in the conference in various capacities. A lot of pediatric
medical facilities use the phrase "family-centered care", and often
times, it's nothing more than a marketing phrase. Today's
conversations with Sammy's physicians reminded me once again about what
a great medical team we had caring for our son and the lasting bonds we
have formed with them.
6/13/08 - I went to the cemetery today. I
haven't been to Sammy's grave since Easter because going there makes me
feel too sad. Maybe it's because Sammy was buried in January, and each
time I've gone over the winter months, it has been cold, rainy, or just
plain dreary. We haven't decided on a headstone yet, so each time I go,
I'm reminded that we still need to do that.
My visit to the
cemetery was a little better today. Delicate blades of grass are
starting to grow now on Sammy's grave, and eventually there will be a
thick carpet of grass. While I was there, I saw a deer grazing near the
wooded edge of the cemetery. She let me watch her for about 15 minutes
until she slipped back into the woods. I've been stressed and tired
this week, so spending that time just watching the deer is a gift that
I treasure.
6/22/08 - As the HPE conference draws near, a lot of
thoughts begin to come to the surface. I'm so excited to see the HPE
families; some of them I have already met, so it will be a joyous
reunion. Others, I will be meeting for the very first time--even though
I feel that I already know them so well. There's a special bond I feel
with these families because they truly know what it's like to walk in
my shoes. They speak my language, and they know where I've been because
they have been there too.
Of all of the children I've known with
HPE, there is one particular child who was the most like Sammy in
nearly every way--almost constant seizures, medically-fragile and very
complex. When I would reach the end of my rope and had alleviated all
of my other resources, his mom is the one I would seek. She had a few
years of experience on me in the complexity department, and I could ask
her the difficult questions that no other parent or doctor could answer
for me. Whether she knew it or not, I seemed to reach out to her when I
was in my darkest hours and most fearful of losing Sammy. Her son
passed away three years ago at 4 years of age, and his death was so
very upsetting to me.
After Sammy passed away, she made a
comment that sticks with me. She said that following her son's funeral,
after everyone had gone home, she remembers being completely exhausted.
Four years of constant stress, worry, and caregiving took every bit of
physical energy she had. In those four years, there wasn't time to
rest. When others routinely asked her how she did it, she always said
that her son came with adrenaline. I can almost picture the
scene--"Here's your new baby along with a four year supply of extra
adrenaline because you're gonna need it!"
Last week as I talked
with our grief counselor, I realized that my four year supply of
adrenaline gave me the physical energy to keep going every day in order
to keep up with Sammy. As I thought about it, I began to see how Steve
and I learned to thrive under pressure. While in crisis mode, we were
on our game. As I prepare for this HPE conference, I can sense that
same adrenaline pushing me and enabling me to complete tasks that
otherwise wouldn't be possible. That's where I'm struggling--I'm a
planner and a list maker at heart; it's not in my nature to "fly by the
seat of my pants", but that seems to be my middle name these days. I'm
temporarily stuck in the "Tyrany of the Urgent", and it's those urgent
matters that are propelling me forward. The adrenaline rush comes when
the urgency strikes, but have I become an "adrenaline junkie" able to
function only when my back is against the wall? If so, I'm in serious
trouble because it's not healthy! The good news is that after the
conference, I will be able to take a deep breath and slow down a
little. The best news is that my way of coping is to turn to Jesus who
said, "Come to me all you who are weary and burdened, and I will give
you rest." Sweet rest!
6/26/08 - Do you take tomorrow for granted? We live in a fast-paced
society, and we all have moments where we are forced to schedule our
lives weeks and months in advance. When we schedule the dentist
appointment for 6 months from now or we book a cruise nearly a year in
advance, aren't we taking it for granted that we will be here when that
date arrives? Think of how many people started their day on 9/11 not
realizing that their life would forever change in an instant. As they
slipped out of bed that morning, they had no idea that the world they
knew would come crashing down around them.
Even when we have a
loved one with a terminal illness or a child such as Sammy, we know
that dreaded day will eventually come--probably sooner rather than
later. From that perspective, we learn that time is so very precious,
and we can't take any time for granted. This week, a family I care
about is hurting from the heartache of their daughter's passing with
HPE. When I think of their daughter from my perspective, I can make a
list of so many things that she did in her short life and the
experiences she had. Her parents didn't sit around feeling sorry for
themselves; instead, they celebrated the blessing of her life knowing
that time is precious.
Little did I realize that Steve and I
have been modeling our grief for them in preparation of their own
grieving. This family has been there as a witness to our darkest hour
of mourning, the most heartbreaking day of our life, and our joyous
celebration even in the midst of our sadness. In our HPE world, we
often say that we're on a journey together. I like to think that we
each carry a candle which lights our path and makes the journey a
little easier to navigate; but, when our child passes away, that candle
is extinguished. That's when we look up to seek others who are ahead of
us in our journey, and if we reach out to them, the light from their
candle can be shared with us as we learn to navigate a new portion of
the journey. The unexpected part of the journey is that we discover
others who are willing to walk side-by-side with us until we find our
own way, and once that happens, we are able to share our light with
others.