Dear Momma of a Chronically and Critically Ill Child,
I’ve seen you in those hospital rooms. We’ve passed each other in hallways and silently ridden the elevators together to get a breath of fresh air while painfully stepping out of our child’s room. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with their heart still beating. 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 okay.
You are brave. You are strong. You are loving.
You fight for your children because 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. Because your fear overwhelms you and you question your own positivity when hope seems so far away. 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 are all too familiar with pulse ox monitors, Vest systems, Cough assist machines, nebulizers, and devices most parents don’t even know exist.
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. Sometimes you feel safer there than inside the walls of your own home.
I see you, momma. And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high waters, 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. You know when they’ve had enough and when they simply can’t take any more.
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 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 bed to just hold your baby.
Most moms have memory books full of pictures and “firsts”. You have a binder that carries xray images, pages of prescriptions, test results, doctor referrals, phone numbers, 504 plans, IEPs, social work information, financial aid services, home nursing services and so much more.
You are brave. You are strong. You are doing a good job.
You are a mom. You would do anything for your child. When one doctor gives you an answer you don’t like, you’re willing to travel halfway across the country to get another opinion. To find another answer. To know that you did all you could for them. To know you exhausted every option, every resource, to know you did every single thing within your power to offer them all you had to give them.
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 and loving your child no matter what. Even when it feels like you can’t go on. Even when it takes everything out of you.
You are doing a good job. You are a good mom. No, you are an amazing mom.
A Mom Who Knows, Who Fights, Who Cries and Who Prays Alongside You~Lindsay