Once, when I was waiting for a doctor’s appointment with Kyrie (who was on oxygen that day), a woman came up to us.
I know who you are. I read your book.
This happens, sometimes, despite the level of introvertedness Nathan and I share, and in spite of our very most excellent avoidance behaviors.
I read your book, and I think it’s terrible what you have done.
This was new. I was confused. She pointed at Kyrie and said:
She is suffering because of you.
You should have just let her die.
Then the lady walked off.
I was shocked.
Kyrie was confused.
Comments like that always sting most when there is a level of truth in it, right? I mean, this is the whole dance of palliative care, and why we need that team, for how much do we intervene when? There is a fine line between quality of life, comfort measures, and what prolongs the inevitable.
Except in Kyrie’s case, she continues to defy the odds, complicating these questions developmentally.
What would you do for your child to live long enough to throw temper tantrums?
Would you keep your child home from nursery on Sundays, just so she could live through the winter, even though it meant she was missing critical social development that was making her more of a threenager than she already is?
Could you look your child in the eyes and tell them they could never put food in their mouth again, because that was the only way to live another six months?
Could you look your child’s doctor in the eyes, and agree to stop forcing feeds your child’s body no longer wants?
How do you decide whether to put your child through one more surgery, after so many life-threatening ones, when this one is “just for speech” but could once again leave her in a coma, on life support, or even kill her? But without it, few people in the hearing world would be able to understand her?
What do you say when strangers stop you in the aisle to tell you how beautiful your child is, but you know that “beauty” is a spirit shining through bright eyes and everything else is plastic surgery that saved her life? And what messages does all that give her about who she is, as opposed to what they have done to her, as opposed to her intrinsic character and divine nature? How do you teach a two year old to differentiate all that?
How do you teach a toddler to be kind, when every day she gets held down against her will, when repeatedly grownups do terrible things to her body that make her hurt, when she is so very often given almost no choice in what she must endure? Is it still courage when there is no choice? How old does she have to be, how verbal does she have to be, how self-expressive does she have to be to reclaim choice for her own body?
It plays out differently as parents.
You say you would do anything for your child, but would you? Really?
Would you leave them to work two or three jobs, if that was what would keep her alive, even though it meant be away from her?
Would you give up your house, if that’s what it took to pay her medical bills? Even the house you built yourself?
Would you tell your story, all raw and ugly, in front of everyone, because that was the only way to motivate a community, to educate the legislature, and to reach out to other parents of babies like yours?
Would you take turns parenting, so that you rarely saw your spouse, alternating hours in the ER, time in the hospital, turns in the night checking feeding pumps and oxygen levels – even when those exhausting newborn hours in the night are still your reality when your toddler is almost three?
What if you have other children who exist, too? How do you parent them? How do you give them days away from medical drama, while still supporting them through their daily experience when their version of “playing house” includes chest compressions and life flights? What would you sacrifice to include them in every moment so that they know they belong, are just as important, and as much a vital piece of this experience, while also protecting them from it as much as pain and grief possible?
How far, like Job, could you be pushed before giving up?
The last few weeks have been hard for our family.
Kyrie had some really scary days, and the children are ever so aware of it.
But there are also many layers behind the scenes of which they are not aware, as we try to process the practical implications of our lives together.
Remember how we made arrangements to pay the mortgage two weeks late, so that we could do her out of state hospitalization, but the loan was sold while we were gone? And so when we got back and paid as we had agreed, those two months of mortgage were sent back to us because it had been sold and we had to send it to a different address – which they did not tell us in that letter, but only that we had to wait for another letter for where to send it. So the next month, we had to pay all three mortgage payments, and were so relieved to get it all settled, and they even reversed the fees because they found their paperwork in the wrong file that we really had made appropriate arrangements in an emergency. Except this month, they just sent it all back to us again, saying that we have to send it by wire now, except now they think they will just foreclose us because we didn’t pay for four months – even though they document in the same letter all of which I just wrote. It’s been insane, and infuriating, and even our attorneys are livid.
The good news for us is that our lives are hard enough that the threat of homelessness is the least of our problems.
I’m kidding, of course, because it’s so awful.
But the real good news is that if our attorneys really cannot work it out, or if it is all put on hold while it gets worked out, we have found a safe place around the corner where we could rent in the meantime, which would leave the children in the same neighborhood and the same ward and even actually give Nathan his own office from which to work and write, without changing our monthly budget at all. That in itself is a long story, and a miracle, but one we have been fasting and praying for as more than a backup plan. Pirates can battle over their own paperwork all they want, but my children will be safe and warm and sheltered, with as little disruption as possible.
Because of course we are not going to be homeless, but that’s what it feels like when all those attorneys and bankers are arguing with each other without you over something you didn’t actually do without any context of your story about why you did what you did without knowing the terrible timing it was to be doing it because you didn’t really have a choice.
That’s one thing we have learned from palliative care: a whole lot about agency.
There are some times when it seems there are no choices, like getting a feeding tube and being force fed in your belly, but when there really are choices – like choosing an organic food blend that doesn’t cause other complications, or which kind of syringe is most helpful for us, or what size of pump.
Even Kyrie gets some choices: whether to help hold her gravity feed or not, and how high she wants it; whether or not to help push in her syringe feed; or which tubie pad to wear that day.
But there are a lot of times people do not have as much choice as you might think, we have learned.
Especially in poverty: there are additional fees to pay when you can’t pay something all at once, more additional fees if you can’t pay on time, and higher fees if you don’t have a history of paying well.
I mean, I know paying your bills is the right and responsible thing to do.
I’m just saying that one thing we have learned from our experience with Kyrie, and the biological parents of our children adopted from foster care, something we had no idea before these experiences, is how very expensive it actually is to be poor.
Or how badly your body feels when you can’t afford healthy food, or enough sleep, or fancy workouts.
Or how rude people are when you clothes are not the latest fashion or don’t fit well, or if your hair isn’t styled the right way, or your lips don’t shine the brightest.
Or how exhausting it is to fight for everything: your food, your shelter, your transportation, your work.
And how little coping skills you have left for normal necessary things – like rotating your tires or changing the oil – or the kinds of choices you have to make when you don’t even have resources for that, much less for gas to get to work so that you can earn money to help.
I used to be angry at one of our bio moms for not showing up to visits, almost ever, when the other parents sacrificed so much to be there every time. But now I understand her situation differently, and have found a place in my heart for mercy (four years later). It also showed me, though, how much the other parents were sacrificing in ways I didn’t even know before.
Parenting is so hard! In so many ways!
This is entirely superficial and maybe sounds ridiculous even as an example, but Nathan and I even gave up half our library, which maybe was our greatest possession, other than my mother’s china or Nathan’s instruments – but even some of that got sold.
Because you do what you have to do, right?
It has taught us a lot, these experiences, and we have more compassion than we did in the past, I think. It helps me not judge some of the stories I heard from the children about the kinds of choices their parents had to make, and it helped me better understand why it was so hard for them to do what was required for them to get their children back.
I mean, our children have never gone hungry while living with us, and we know that Heavenly Father has been faithful to us in always providing sufficient for our needs. I am not at all complaining. I just mean there has been a lot to learn in these humbling circumstances, a lot of insight we have gained from this attempt at living a consecrated life where we are called to sacrifice some comforts of our own to give comfort to these little ones.
And they are not neglected, with one of us always at home with them and so many adventures every day.
And the emotional dramas of their past, and the ongoing saga since landing in our family, gets processed in counseling every week. We take turns there, all of us, with games and stories and the sand tray.
The children are safe, and happy, and well. I am not writing all this because they are in danger. I just mean that parenting, and the sacrifices of parenting, teach us so many things we never knew before.
And parenting other people’s children forces you outside your own world to better see the rest of the world.
And parenting of any kind changes your perspective on everything.
So when the random coworker that rarely actually interacts with me asks:
How’s that little one of yours? Is she better yet?
I stay calm. Eerily calm. I quietly say she isn’t going to get better.
I say we are just trying to keep her stable.
I say we are working to prevent her from getting worse.
I remind him there are other children, too, and I tell him funny stories about them so he knows there is more to our family than a daughter who is dying.
I don’t tell him we will probably have to move again to keep taking care of her.
I don’t say it because most people don’t realize the implications of trying to care for a medically fragile child.
I don’t say it because some people make such awful comments about it being our fault for adopting her in the first place.
But what if she had been born to us? What if they had all been born to us, and this was our story anyway? Would we not still care for them?
And so what if we did adopt them? Who else was going to care for them, in a state with not enough foster parents, in a state cutting the subsidy rate for foster parents, in a state cutting early intervention and outpatient services? Who else would care for them and work so hard to try to maintain connections to their biological families? Who else?
What is it that you have to offer, to give, to share with a child or family in need?
Even if you don’t have the financial resources to support foster or adoptive families, or time to donate to an organization that supports medically fragile children in some way, or energy to help spread awareness by sharing our children’s picture books we are getting published, what can you do to just be kind to someone who is struggling? How hard is that?
Maybe they aren’t going to get better.
Maybe they aren’t a “candidate for change” as we sometimes say about those struggling with addiction in some form.
Maybe, for whatever circumstances, their finances are a disaster, or their children are wild, or their needs are beyond your scope of understanding.
But you can be kind.
That’s one of the lessons in Job, you know, from the Old Testament, the one who lost everything.
He lost his family in a dramatic fashion. It’s kind of like your father dying of cancer and then your mother being killed by a drunk driver. Or maybe it’s like having five miscarriages in three years.
He lost his home and his wealth. You know, like having to move because your child is in medical crisis. Or having to move to prevent your children being in crisis.
He lost his health. Kind of like getting ovarian cancer.
He lost his friends. Like the one who went away because maybe if your life is this hard then God is trying to punish you. Like the one chose her social connections over your advocating for your children. Like the one who says you should just let your daughter die.
Kyrie will die. She will pass away, just like the rest of us, either when she is 2 or 3 or 5 or 102.
And I am a chaplain, and under no illusion of keeping her alive beyond what is her body’s capacity and her spirit’s desire.
But in the meantime, like the rest of us, she has a right to a full experience of each and every day, in as much as she is comfortable and able and chooses.
As do her siblings, who have grown up two years in the time she has been with us, and who don’t need to miss out on their childhood just because they have sick sibling.
So whether it is for a week, or a month, or six months, or a year, or their entire childhood and adolescence, we are a family, and we will live this experience as a family.
And without being so foolish as to invite even more difficult circumstances, I will say again that nothing we endure has any impact on my faith except to strengthen it.
Our Father-in-Heaven has been faithful to us, is faithful to us, and will continue to be faithful to us.
And we know every experience we are enduring is teaching us, improving us, helping us progress in our understanding of who He is and who the people are around us so that we can do a better job of being angels to them as so many have been to us.
Even now, even for Kyrie, even for our family, “all things work together for the good of those who love Him” (Romans 8:28).
And we do.
And so we are not afraid.
Not even when we visit the pediatrician, and watch the Nemo fish jump out of the tank.
Not even when we watch the pediatrician reach behind the tank to pick up the dead fish off the floor.
Because we are a family who has faced hard times, who has struggled, who has even faced death.
And we are not afraid.
We might be tired. But we are not afraid.