There are so many things I WISH. Having now been on this journey for almost six years I look back at our early days and I compare them to the stories I hear of countless other families.
The early days from the PICU to the yes, your child will live but... to going to rehab to returning home to learning how to live a different life with a different kid than the one you gave birth to - it's all very blurry, yet all very clear at the same time. Some of it makes me angry knowing what I know now. It makes me angry and frustrated for other families, too.
After you find out your child is going to live but live a very different life than you had envisioned, there is grief and sorrow and frustration and relief and tension and you're trying to learn how to put a family back together again and on top of all that you have to learn how to take care of this medically fragile child. The hospital and their highly trained medical staff take impeccable medical care and create this high, sterile standard and then they say - Okay, time to go home now. Figure it out. This is where families are lost. They are either sent home with their new child who really never leaves "patient" status, accompanied by round the clock nursing care or they're left to fend for themselves. And everything in between. A far cry from the sterile gloves and procedures of the hospital personnel.
I remember being taught systematic training with sterile gloves for trache changes. We were taught to use brand new catheters with every suction and to throw them away after each use. We arrived home to an insurance plan and DME company that almost laughed at us and said we get ten catheters a month. Total. So much to learn.
Now that I can look back on everything we had to learn and the choices that we've made as to how to go about this new life, I have very strong opinion and very strong wishes for families who are new to this life of have a child with a brain injury. Specifically for those families who had a typical and "normal" child one day, and a completely different child the next. I'm wishing extra hard for those families who had to say goodbye and grieve for a child they gave birth to, while embracing and learning to love a new child.
So I WISH the following:
To parents new to this...I WISH this had never happened to you. I WISH this had never happened to your family and especially to your child. The pain will sometimes be unbearable. The grief will always be there. And there will be some guilt somewhere. Sometimes a lot of it. And it will never, ever go away. But I WISH for you and I know that at some point, if you allow it to, happiness will outweigh the sad and the grief and the guilt. I know it doesn't feel like you'll ever be happy again but I WISH this for you. I WISH it with my whole heart.
I WISH the medical community wasn't so medical. I WISH they empowered parents. I WISH they educated them. I WISH that rather than basically saying - Your kid is gone. Here's a nurse. Good luck. It's gonna suck. - Offer parents a crash course. How to Take Care of Your Brain Injured Child: 101.
I WISH there was a crash course called How to Take Care of Your Brain Injured Child: 101. Or Taking Care of Your Brain Injured Child For Dummies. Or even What To Expect When You're Bringing Home a Brain Injured Child. Because instead we get a lot of sad looks and recommendations and doctors puffing their chests out offering their egos on a platter. None of that is helpful.
I WISH our children weren't treated as patients. Of course they're patients in a hospital. But they're also treated like patients during parent training. They're treated like patients when they're sent home with a nurse right away. They're treated like patients in their own home. These are children. They're family members. They're our babies. Encourage families to embrace that thought rather than fostering and encouraging a caregiver-patient relationship between a parent and child.
I WISH there was no such thing as a "team based model" of therapy. One size DOES NOT fit all.
I WISH for every single therapy - alternative and traditional - to work for your child. Or even half of them. But some don't and some won't. And what works for one child probably won't work for another. That's just the reality. But try it! Try everything you can.
I WISH that in home nursing care was recommended as a partnership rather than a babysitter or the primary caregiver. I WISH parents were empowered to take care of their brain injured children. Sorry not sorry but I see too many parents that are helpless and at the mercy of their nurses or the ER because they can't even change a mic-key button that was accidentally pulled out or change a trache. I WISH for parents to be empowered. To know what to do. You know what happens when parents of these children aren't empowered? The medical community gets to weigh in and make decisions that will trump the decisions and wishes of the parents eventually.
I WISH parents would get to know their children again. I know it's really terrifying. I know. But it's worth it. Don't leave that part up to a caregiver. I WISH doctors would encourage this. I WISH doctors didn't try to scare the ever loving crap out of parents. I WISH they would say, "Yeah, this is bad. But you can do this."
I WISH states would follow the lead of Colorado and California and train, support, and pay parents of children with brain injuries to care for their children. It only makes sense. I had this conversation with a supervisor for our Department of Disabilities and she said, "Well, why would we do that? That's paying parents to take care of their own children." Okay, I get that. And why would you consider that...well, BECAUSE THIS IS WAY DIFFERENT! You can't just get any babysitter from around the block to take care of your child. It's not the same. So we pay a nurse but we can't pay the parents for doing the same job? What about single moms? What are they doing? Wouldn't it be empowering to train, support, and pay a parent for caring for their children? What could be more supportive? A team based model? No thanks. Because if you're telling parents We won't pay you but we'll pay a stranger, that's like saying A stranger's care is worth more than yours. Bullshit. And that's not empowering, by the way. No wonder parents don't feel like they know how to take care of their own kids.
I WISH there was a standard of care everywhere. I WISH there wasn't a "hospital most likely to trache" or "a hospital most like to pull the plug." STANDARD OF CARE, people.
I WISH there were support groups in place upon discharge. Like, immediately. Like, in the hospital even before discharge.
I WISH everyone could have a Peg. We had an early intervention team that included a nurse named Peg. She didn't come to the house to administer medication or take blood pressure. She came to hold Christian. She read stories to him. She brought nursery rhymes. She brought special oils for massages. She talked to me and brought me little crafts I could do. It was like she was Chief of Well Being. Everyone should have a Peg, Chief of Well Being.
I WISH doctors trusted parents. And I wish parents were empowered to be trusted. I wish the decisions of parents were respected.
I WISH parents would grab a hold of their situation and take charge. This is your life. And, yes, this is messed up. And it's not fair and never will be. But don't give up! Get a hold of yourself! Yes, there is a time for crying. But don't let that become your life! Nobody will take you seriously if you can't get a hold of yourself.
I WISH doctors didn't think it was their job to "enlighten" parents by reiterating what children with brain injuries can't do. You know we already know, right? Nobody knows better than we do what our kids CANNOT do. And if we are overly positive or too hopeful (if there is such a thing), excuse us as we're really just trying to survive.
And, again, to parents that are new to this...I WISH for you and your family to be surrounded by good people who love you. I WISH for a strong, supportive, empowering team for you. I WISH for as much recovery as humanly possible. Not just for your child but for you and your marriage and your family, too.
I WISH this with my whole heart.
Texting with Penny
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