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.