I want to get this blog post just right, and yet I’m afraid that I will fail miserably.
But I’m going to try.
I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide. They had a chronically ill kid, a child who had received a heart transplant. They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat. There was a future thanks to a generous donor. People like to think of it as a happy ending, but in reality organ donation is only a beginning.
A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes. We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.
In fact, up to this point, I know exactly how they feel. Scared, hopeful, struggling. There’s not a lot of place in this world for a sick kid. I’ve said that for so many years now I feel like a broken record. Not a lot of place, so parents of these kids keep fighting. Fighting for prescriptions, fighting for 504s or IEPs in school. Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies. Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.
And yet, none of us know what we sign up for as parents, and we have to move forward. We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers. No one is going to do it for us, and no user manuals are included.
There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis. They are unwitting victims of the tragedy. That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.
There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else. So you make fewer waves even if something might be wrong because you can’t afford to be unemployed. There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.
All of these problems contribute to difficulty in a marriage. You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting. You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.
Damn, it’s really hard.
The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues. She talked about her survivor’s guilt, knowing that another child died while her child lived. I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor. It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.
Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid. And I feel so many emotions connected to it. Anger at the futility of it, and anger for the donor family too. Sadness, a bottomless sadness for the family. Horrible unrelenting understanding at the dark side of the situation. Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.
Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either. It’s only through the personal connections you have and make that carry you through the hard times. It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve. It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.
Hug the ones you love today and thank them.
My deepest sympathies and condolences to those who knew and loved the Short family.
The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255