-- (Editor's Note: This article first appeared on the blog Scribbles and Crumbs. It has been reprinted here with permission. Lexi lost her son, Charlie, on October 27. Charlie was six-and-a-half months old when he died.)
To the Momma of a Chronically and Critically Ill Child,
I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your babies with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes. This is the kind where no one can assure you that your child is going to be OK.
You are brave. You are strong. You are loving.
You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by, dropping NG tubes, changing trachs, giving IV meds through a Broviac at home.
You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. You call your children’s hospital your home away from home, and while the rest of the world may find that sad, you see the hope. It’s the place that gives your child a chance at life.
I see you, momma. And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high water, and you are doing a good job. You are giving them the best.
You are their cheerleader. You are their smile maker. You are the one that knows their favorite songs and favorite toys. You are the one that knows how to calm them down, how to hold them, how to love them best.
While other parents know everything about their child’s sleep habits, you know everything about your child’s vitals -- where their normal sats should be, what their resting heart rate is, their normal pressures. While other parents can talk about their kid’s feeding schedules, you could talk all day about your kid’s anatomy, what surgeries are next, or what treatments are on the radar. While other parents are teaching their kids to crawl and to walk, you are teaching yours to drink from a bottle just to get rid of that dang NG, teaching them to bear weight on their legs and rebuild their core from weakness of lying in a hospital bed all day. While other parents look forward to going out on a date night without kids, you look forward to the moments when you can grab enough hands to shuffle around a bunch of machines and a hospital crib to just hold your baby.
You are brave. You are strong. You are doing a good job.
You are a mom. You would do anything for your child. And some of you have to brave the path that no parent should have go down. Instead of debating the best way to introduce solid foods to a baby, you are making decisions with doctors on quality of life for your child. Instead of choosing diaper methods, you are choosing between cremation and burial. Instead of planning a first birthday party and stressing over the details to make it perfect, you are planning a funeral. ... You are a mom. You would do anything for your baby, even when it means they are in Heaven and free and you are the one left here to suffer.
To those of you, I see you. Hold on to hope.
This is not a path anyone chooses. You did not do anything wrong to make this happen. Your child did not do anything wrong to make this happen. This does not make you worse or better than any other parent. It just makes you different. You love your child the same, you just experience things differently than the “normal.”
Keep on doing what you are doing, loving that kid no matter what.
You are doing a good job.
You are a good mom.
A Momma Who Knows