Obviously I have been lacking in the writing department lately, but my husband threw this my way a couple of weeks ago. It took me a little while to read it, but it is beautiful and needs to be shared. We'll just call him my guest blogger for the week!
Nearly two years ago Candi, Emilie and I were in the middle
of the rush of appointments that occur during the first two weeks at St. Jude.
Parents who have been in those shoes know what I am talking about. When you
first get there, it seems like there is no room to breathe or do anything else
as you are running from one appointment to another with very little time for
anything else, including food. I remember that we were coming out of one
appointment and needed to rush to see Emilie’s neurosurgeon and it was lunchtime.
Many knew that Emilie was not one to miss a meal and if she did, She Hulk came
out. So, Candi ran to get food in the Kay Cafeteria while Emilie and I ran to E
Clinic. Well, alone in the exam room, Emilie laid on the bed and asked, “Daddy,
am I going to die?”. I had already read countless academic articles about DIPG
by then, each of which laid out a clear prognosis of 0% survivability rate with
this disease. So, I knew the reality and therefore the answer to that question.
I replied to her calmly and soothingly saying, “We all die, but that is
something you definitely don’t have to worry about right now.” So, I didn’t
lie, but I didn’t tell the truth either. I equivocated… But I knew the answer.
I will never know for certain, but I think Emilie may have
known as well. She never let anyone know it and she never showed fear. During
her treatment she would ask what happens if the shots do not work, and I would
tell her that we would find the next step. I remember sitting in a doctor’s
office with her and Candi when we were being told that her tumor was growing
and the current course of treatment was not working. We discussed that the next
step would be a trial in Houston. We asked Emilie how she felt about it all
after being told her tumor was growing and she replied enthusiastically, “I’ve
never been to Houston! We’re going to Houston!” Emilie always seemed to look
forward, not backward.
Well, perhaps one night she was looking forward when we had
one of our daddy-daughter talks as I tucked her into bed. She asked about
Heaven and what it was like. I told her I didn’t know, but what I did know is
that we get to see all of our friends and family who passed away before us. I
told her that I looked forward to seeing my dad again who passed away from
cancer many years before. I told her that when it was my time, he would find
me. Then, she looked up at me and told me that in Heaven, she would find me.
So, I write all of this in order to reflect on a couple of
posts I’ve seen recently through Facebook. One in particular was a death that
hit very close to home for Candi and I. A month after losing his daughter, a
father committed suicide. It brought Candi and I to tears and we shared it on
Emilie’s page in a call for thoughts and prayers for the family. We were
especially disheartened when one person posted a comment calling the act
“selfish,” and we immediately deleted the comment. On the one hand, we did not want
judgmental comments about this on Emilie’s page, but, at heart, Candi and I
felt that the father’s act was far from selfish.
When Candi and I originally saw the post, we confessed
through hugs and tears, that suicide had crossed both our minds after Emilie’s
death. But, both of us weren’t thinking of it out of despair, loss, or sadness.
We thought of it because we were and always will be Emilie’s parents.
As parents, when your child gets sick, you do everything you
can to make them feel better. There is a pride in kissing a boo-boo and making
them feel better, even though kisses don’t medically accomplish the same things
as Neosporin and Band-Aids. When they are little and you drop them off at
daycare for the first time, you instinctively want to stay and watch out for
them and never want to let them go. When they get bigger and go off to camp for
a week for the first time, it is hard on a parent because you don’t know what’s
happening to them. You can’t wait for them to get home safe and tell you all
about their adventures. And, when they are diagnosed with cancer, you expend
every ounce of your being fighting for them.
You pray to God to switch places to take all of the hurt and
pain instead of your daughter. You have to watch when they get stuck with
needles and you console them when it takes three times because the nurse
couldn’t find a vein that would work. You stay awake throughout the night as
they lay sleeping in an ICU room for fear something will go wrong. You research
at a feverish, manic pace in the hopes of finding that needle in a haystack that
will be the one thing that will save your daughter’s life, even though everyone
you talk to and everything you read says you won’t find it. Sometimes you wish
to just find something that will make it better. And all the while you fight
the disease, you also fight to give your daughter a chance to live at least
some of the life she won’t get to live because the research says she won’t.
And, when your daughter tells you it is too much, you work to give her the
normal that she really wants. Finally, you fight to help your daughter pass on
in peace, surrounded by family, friends, and her dog. Then, she dies, and is
hopefully on to a new adventure. But this time, it is without you, and you
don’t know what is out there awaiting them. As a parent, you have spent their
lifetime protecting them, or trying to only to fail. That deep, manic need to
protect your child doesn’t stop at death’s door.
So, I contend that in this case suicide may not be a selfish act, but a
deep act of love and devotion… true love. The greatest loves of my life are my
children and I can only imagine that to be true for that father. The pain of
losing a child that you are supposed to protect is greater and more suffocating
than anything one could ever imagine. True love of your child drives you to
need to be there for them, but they are no longer here.
Let me make it clear that I am not advocating for or
condoning suicide, but trying to give it the perspective of a parent who has
lost their child to cancer. At the same time, Candi and I will never condemn a
parent’s choice in this fight. Future research might turn its focus and
consider those feelings as professionals work to help grieving families through
this incredibly heavy horrible experience.
As for us, suicide is not in our future. For this father, dreams
of Emilie since her death where she is smiling give me some peace and hope. Her
cancer gave her a crooked smile and she once asked me when she would get her
smile back. The few times she has come to me in my dreams, she has her smile
back, so I have a clear sense that she is happy.
Candi and I also talked about having purpose. One of the
best books I was given after Emilie’s death was Victor Frankl’s “Man’s Search
for Meaning”. It is the story of the author’s surviving a Nazi concentration
camp in WW2. Frankl had a reason to live, love of his wife and his work on
logotherapy. As parents with two children, one of whom has passed away from
cancer, we are torn between two realms. Emilie is in one, and Alex is in this
one. Alex gives us purpose. Fighting cancer gives us another. Anything else
would meant that Emilie fought in vain. We struggle, and always will, with
living day to day without our daughter, but we take it day by day together. We
are also lucky to have so much support as we do so.
So, I know I have to wait until it is my turn to pass and
will continue her fight in the meantime. And then, when it is my time, Emilie
will find me.
(Just to clarify further--Neither of us are in a place where we would ever take our own lives. There are too many here to live for and too many important things to see and do. We do understand the pull of wanting to be with one's child again and wanting to be her protector always, so I just want to reiterate that idea.)
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