During the early days after my daughter’s brain tumor diagnosis,
I was incoherent.
I barely ate for 10 days.
I barely ate for 10 days.
I couldn’t sleep.
My husband and I sort of waded through a fog of despair. I don’t
know how else to describe it, that slow motion/breakneck hurtling forward
feeling of those first weeks.
In a matter of hours, we went from getting G a Happy Meal as
a reward for being good for her MRI to playing phone tag with neurosurgeons in
New York and Pennsylvania.
We were utterly broken, and we stood at the epicenter of a
sea of brokenness—we are both from large families, and the ripple effect of
this disaster battered a lot of people we love.
G is NOT an only child. At the time, her little sister was 2, her big
brother was 9. Trying to keep functioning for them, and for G, pretty much sums
up those first weeks into months.
The first blinding lesson of all of this—after the “if a
doctor calls you immediately after an MRI that is NOT a good thing” lesson –
was that in time of devastation, good people show up. Even that first day, that first horrible day,
a friend of ours had planned to bring us dinner, knowing we had this MRI
planned and it would likely be a stressful day. And as she brought that chicken
divan to our door—and I was on the phone, crying, begging our pediatrician to
just tell us what to do, what were we supposed to do??—I mouthed to her “please
pray”.
And she did.
In the weeks following the diagnosis/shunt surgery/port
surgery/ start of chemo/almost immediate vision loss/severe behavioral
challenges/chemo fail/ regroup, people carried us. Meals showed up at our house
regularly. G was inundated with Care Bears and crafts and sparkly things. Our 2
year old was cared for by family during our frequent trips to Philadelphia, 2
hours away. Family members stepped up to take our 9 year old to his baseball
games. I got taken of the mandatory “lunch
duty list” at school (one of the very few things I instantly saw as a huge
blessing of this awful diagnosis. ;) ).
Random friends of my parents went to G’s school to provide one on one
help for her, because she was having such difficulties emotionally,
academically, and physically while on chemo. Every day. They showed up every. Single.
Day. For the entirety of the school year. For free.
Compassion. We saw compassion lived out, acted on, practiced
at a level we had never witnessed personally. It was staggering, and humbling,
and life giving.
Being on the receiving end of this level of compassion is
not easy—it feels…hard. But we are so grateful.
Over the last 12.5 years since that terrible day, we have
gotten better at asking for help—not directly for us, usually (that is still
hard), but for research. For organizations that have blessed us, groups like
Ronald McDonald House & Ronald McDonald Camp, Children’s Hospital of
Philadelphia, Friends of Jaclyn, Camp Sunshine, the Children’s Brain Tumor
Foundation, and of course the Children’s Tumor Foundation. We ask and ask,
because we want G to grow old, we want her sister to grow old, heck, even
though Dave and I are well on our way, I want him growing old with me and
firstborn, too! So we ask. And people
have so generously answered us so many times and ways over the last decade and
more. We are grateful. Nobody has to do that. We are sort of continuously agog
at how awesome people are.
And it is in this spirit that I hope compassion prevails
today, in the debate over Affordable Health Care. We know we are NOT entitled
to people’s generosity. Generosity and compassion are gifts. We know this. We
have been blessed, too, that Dave has great insurance at his work, and all of
our medical yikes, the 50+ MRIs (at over 10k a pop, usually—and that is only
for one of our NF kids), the multiple surgeries, the hospital stays…those are
covered, to a great degree. And we are so, so lucky. G is 18. She will be 19 in
July. When my 6 year old G was diagnosed with massive hydrocephalus and
multifocal brain tumors, we could not see this day. We are almost incoherently
grateful that she has gotten to grow up.
In a few years, she will have to take on her own medical
care—our insurance will no longer cover her. The ongoing challenges of the dual
brain tumor/NF diagnosis are many, and in every way, shape, and form are the
legacy of her pre-existing condition.
I try to avoid
political discourse here; that is not what this page is for. I avoided social
media for two months during the election, the political discourse from friends on
both sides of the spectrum was so demoralizing to me. Still, as NF and brain tumors have intersected
in our family’s life, so does the issue of insurance and our G’s future. This
is personal for us, for G. We have fought so long and so hard to care for her,
to help her grow up—and we can try to provide as best we can…
But at the end of the day, we have to appeal once again to
the compassion of people we don’t know. Strangers
who, on social media, say things like “your sad story doesn’t obligate me to
pay for your health care” (this was in response to Jimmy Kimmel’s monologue
about his newborn son). While this
statement is a bit shocking—it is true. Very true. Our sad story obligates no
one. We totally respect this. We can
truly only appeal to compassion and generosity, fueled by the conviction that
our children’s lives—both in my family and in our community of smite-- are
worth more than any actuarial calculation about insurance risk/benefit.
I hope and pray that our elected officials (I called ours!)
can see with eyes of compassion, and understand that behind every statistic
there is a human being, who has a family and community that loves and values
them. Just as the picture of that little boy on the shore in Greece made people
understand that refugees are not faceless threats to society, but young
children and families desperate for a life free of violence and upheaval, I
hope the stories many parents are sharing will help people see that “pre-existing
conditions” affect children and adults who just want a chance at a healthy life—folks
who make the world a better place by being in it.
Policies have consequences. Nobody is asking for
entitlement, just for that compassion that makes us most human.
Thanks, for the millionth (and still not enough!) time to
all of those people who have shown us so much compassion over the years. You
all have helped G get to grow up. Thank you. I hope that she does not have to
fear a future where she can’t afford medical care—I really have to try and
trust in the continued compassion of good people everywhere.
