It’s a very simple truth that you probably found out the second that your child was born…
You have to fight for them.
If you were lucky enough to not have to fight from the very beginning, you have definitely figured out somewhere along the way that you have to fight for them.
Doctors. Nurses. Nurse practitioners. Therapists. Other parents. Schools. Teachers. Aides. Funding programs. Care programs. Bussing. Transportation. Things to make their lives &/or your lives easier.
That’s a short list of things you may have to fight for and people you may have to fight with for the sake of your child. There are lots more, just that gives you the gist of it. People who are supposed to be on your side are the ones you will have to fight with the most.
Take a moment. Let that really sink in.
Sometimes, people who are supposed to be on your side are the ones who you have to fight with the most.
That’s the hard and very sad truth of the matter. It’s so wrong that your “team” (you know, the ones who are supposed to help you) will be the ones you will likely fight against the most often. It’s a sad but true reality. Sometimes the fight will be hard, sometimes it’s easy.
Let’s talk about the hard stuff first.
Doctors have a way of spinning their truths to make you doubt even the strongest pieces of evidence to the contrary of what they are saying. They also have ways of spinning a tale that can make even the most strong minded of individuals question if their stance is truly the best stance to be taking. While I am not one to ever take them at their first opinion, and I never have, some do. When they bombard you with “bad” news, they tend to make it out to be absolute worst case scenario each and every time. Like, for example, maybe they are telling you that the only option for your child is full time catheterization, but you feel strongly that you want to wait to see, because your child is able to urinate on their own. Maybe your specialist will come back with “oh, for now, but this is going to be easier in the long run, because we have no way of knowing what the future may hold. Your child may as well get used to it just in case they do need it. It’s way more painful for them if they aren’t used to it already. Besides, yes there are risks with this course of treatment, but honestly it’s safer.” See what they did in that scenario? They told you their option was easier and safer. Are you questioning your stance at the moment? Likely. Doctors aren’t known for their optimist outlooks. Keep that in mind as you navigate this new path. They will tell you “absolute truths” that are absolutely anything but the truth. They will tell you them over and over and over… Until you start to ask the right questions and show them you’re doing research of your own and not just taking them at their word.
Sometimes, it’s really hard to stand your ground. But, it’s important to know that you can.
Sometimes the ground you are standing on will shake. No, wait, that’s your knees. Your knees will shake. Because you’re scared. Because this can be scary. I don’t know of a single person who has looked a doctor or therapist or specialist, or whomever they disagree with, in the eye and said “with all due respect, you don’t know my child like I do. You don’t always know what the best treatment plan is for my child” without their voice trembling just a touch and their knees shaking a bit when they say that for the first time. Let me tell you, though, it gets easier each time you say it.
Sometimes you will get lucky, and your specialist or doctor or therapist or nurse practitioner, or whoever you are seeing that day will listen to what you have to say. Sometimes they will even agree with your treatment plan. If they don’t agree, sometimes they will listen enough to create an entirely new treatment plan with the focus being where you or your child actually wants the focus to be. If you find someone who listens constantly and works with you rather than against you, they are an ally more valuable than gold. Hold on to them as long as you possibly can. For example, our main Doctor is 4 hours away… He is the only doctor who will fight right alongside me if he feels I am right, and will tell me why he feels I am wrong, if that’s the case. We also have an awesome physical therapist who will fight for absolutely any treatment plan I ask for, if she feels it will work for our specific challenges. And if she does not feel that it will, she always has a reason as to why. A well researched reason. Our child’s urologist has been amazing… It was a hard fought battle to get that specific urologist, but worth it all, a million times over… As you can probably see, Our entire team has been picked based upon who we trust… And let me tell you, that was no fun time to find them all. Now that we have the team that we have, though, I will fight for them all. They listen and explain, and they always have very well researched options to present to us. (Gold, I tell you. These people are like gold to us.)
Sometimes the “fight” really isn’t a fight at all. Sometimes all you need to do is speak up to be heard.
Now, the other hard part…
Sometimes, no matter how much you dislike what they are telling you, their absolute truths can be absolutely true. Sometimes, no matter how hard you fight, they are right and there really is no other option other than what they are telling you. That’s why research is so very important. Get a 2nd opinion. Or a 3rd. Or even a 4th. But if all arrows are pointing in the same direction, it’s maybe time you consider that point of view. This is why the fight is so hard. Sometimes you need to fight for awhile, even if you’re wrong, and that is perfectly ok. Just know when it’s time to stop fighting and say “ok my way isn’t working. Let’s hear what your plan is” and listen to the specialists plan. It’s ok to listen to more than one plan and pick the one that jives most with what you and your child want, by the way. Agreeing to listen isn’t giving up, it’s merely recognizing you have an ally and you don’t need to fight this particular battle alone anymore.
You can relax and be comfortable in your decision.
Until next time. And there always is a next time. So, take the comfort of this moment and relax, if only for a moment. Recoup your strength. Get ready for the next one. And know that this one has made you stronger than you have ever been before, and the next one will make you even stronger than you are now.
You have more allies than you realize.
You are amazing.
You’ve got this.
May you have more allies than enemies, and the ability to recognize that fact. May your battles be short and easy more often than not. May you always listen to the inner voice telling you when to fight and when to listen. May your voice stay steady and your knees stay stable.
Take care of yourselves.