Charlotte Amalie weighed barely a pound when she was born and measured the length of a Barbie Doll: 11 inches. The line between viability and miscarriage is often blurred, and at 23 weeks gestation, Charlotte had to prove that she could survive in order to live.
For nearly five years we have stood on the sidelines as our daughter ferociously demanded her space in the world; her right to exist when statistics said she had none. She breathes through a trach, and eats through a g-tube. She relies on a ventilator while she sleeps, as the brain damage from her early delivery has left a lifelong gift of central apnea. The surgery required to close a duct in her heart left one vocal cord paralyzed, and so she speaks in a whisper and cannot swallow safely.
The list of her diagnoses is long, but does not define her. We like to say that Charlotte doesn’t read her own medical file. She has little understanding of the limitations others have placed on her, and as such, she typically flies right past them.
Somewhere along this journey, however, we realized Charlotte’s immune system doesn’t function properly. For a host of reasons, her body doesn’t respond to vaccines the way a “typical” person might, and as such, we rarely know if she is protected against diseases. She’s fully vaccinated to the point that she has received all of her vaccines, but the efficacy of her vaccinations is uncertain.
With this in mind, I’ve watched as the vaccine debate has roared its way through Facebook, and I've patted myself on the back for mostly ignoring it all.
But here is my one plea, my one request.
When you ask to delay or skip vaccines, I ask you to think about the phone calls that are made to grandparents. The one where I call my parents and whisper between sobs, "Charlotte has viral encephalitis from measles and there is nothing else we can do. We are removing support tomorrow.”
Think about what that phone call sounds like and feels like. How many rings until they pick up? What time of day or night is it? How do you end that conversation? What is happening across the room as my husband has the same conversation with his parents? Who will call my siblings?
We've never had to make that phone call, but with a daughter like Charlotte there is a chance that someday we will have to. There are so many children out there who cannot be vaccinated for very legitimate reasons: allergies, compromised immune systems, chemotherapy and so much more. And that's okay — as long as the rest of us stay up to date on vaccines, which then protects those children and shields them from the injustice of living in a society unprepared for their particular needs.
I rarely condemn another parent for the choices they make. I know that a large majority of us are just trying to do our very best. And I know vaccines seem scary, and the risks of disability or adverse side effects are uncomfortable and frankly, unacceptable. I'm raising children with disabilities. It can be terrible.
But I would do it a million times over if I could prevent one mother from burying her child. Because regardless of studies or research or blog articles, that is reality for far too many.
When we read statistics like 1 in 1,000 cases of measles will die, I hope we remember that that individual, that singular person is a child like my daughter. That one child has parents, grandparents, teachers, therapists, doctors and neighbors who love him or her. That one child has an older brother, or a younger sister. That statistic falls asleep to the hum of her ventilator and sweet melodies of lullabies on her iPad.
I hope that the future can bring conversations about better vaccines; ones that will allow children like my daughter to be fully protected, but will also leave “anti-vaxers” feeling safe and comfortable. I think there is room for all of us to come to the middle and find a way to offer protection to everyone, not just those willing to accept what’s currently on the table. I understand the fear, and I cannot bring myself to condemn a parent who chooses differently than me.
But I hope, at some point during your decision-making process, that you think about that phone call and what it would be like to say those words to your mother or father. I hope you are able to take a brief moment to honor those who do not have the privilege of choice.
I hope you will think about Charlotte and her grandparents and the phone call I never want to make.