When I started doing this blog, I promised myself that it would be DIFFERENT from all of the other blogs out there… every blog I’ve ever found about special needs parenting focuses on the wonder of it all… nobody really ever talks about the hard stuff.
We were recently at an appointment that took a different turn than the one that I had expected, and it really made me think… why is the face that I show the world always the positive face? Why don’t I ever show the world the face that hurts? The face that cries? The face that thinks how unfair of a hand my kid was dealt? The face that isn’t dealing well with it all right now? Why do I always put on my brave and happy face? I looked deep within myself to try to find the answers to those questions and I really started to think about how I had promised myself that this blog would be a source of SUPPORT & UNDERSTANDING to parents who needed it the most. The more I thought about it, the more I realized that I really need to let down some of those carefully constructed walls that I put up and share even the hard stuff. Because if even one parent looks at this and says “I’m not alone!” then my job is done. I’ve done exactly what I set out to do.
I recently shared this blog with someone who I care about and they said to me “I could never do what you do on a day to day basis, but you make me feel like I absolutely could!” and that’s fantastic… but I wish that she knew that it’s not always good days. It’s not always smiles. Sometimes there are tears… sometimes there is frustration… sometimes there is even some ugly crying late at night when a year worth of really hard work has just been absolutely dismissed by the one specialist who it mattered what they thought. “It’s not good enough, you need to try a different approach.” (those were not the exact words, just what it seemed like she was saying at the time!) The ONLY person who felt that way was the specialist. Every other medical professional who saw us said how amazing my kiddo was doing. But in that moment, that one specialist cut down every last ounce of my confidence. I’m going to discuss this a bit more in detail in this blog post.
When my little dude was only 2 we switched clinics because the team we were with just really wasn’t working for us. We weren’t a good fit together. The team that we currently have is an amazing team. The doctors and specialists and therapy team that we have in place is absolutely second to none… but in that moment, it didn’t feel like it. In that moment I REALLY doubted our decision to switch hospitals.
I want to take this time to explain something crucial… our team is the best of the best… but a lot of them have severe communication issues. Our specialist whom keeps telling us that he’s not happy with the progress and needs to tweak things even more is one of my favorite surgeons and specialists… but he is HORRIBLE at explaining things. He is one of the nicest surgeons whom I have ever had the pleasure of meeting… he looks everyone in the eye, shakes hands, asks how you are, asks how things are going, etc etc etc… he’s just genuinely a really nice man. But then when he gets something in his mind that needs to happen, it’s like his mind works faster than his mouth does maybe? Maybe he thinks that he’s explaining things to you when really he’s just making it seem like “this is what’s happening and I really don’t care what you think”? Because whenever he realizes that I’m upset about something that has been said he always apologizes and explains better… but sometimes there isn’t enough time in the appointment for us to ask questions and we live so far away from the hospital that it’s not possible to book a follow up appointment for our questions. So, we rely upon the rest of our LOCAL team to help answer the questions.
So, now that you know that part of our story you can better understand about what I’m trying to explain.
Very recently, we saw that specialist that I just spoke of. The meeting took a different turn and I was extremely upset when we left the hospital. He wants to change something else and when I said that I didn’t understand he tried to explain it but I just did NOT get what he was saying, and he didn’t have time to explain further. He said we would just see what he meant in a few weeks when we picked up the new stuff. Fortunately, I have family members that are in the medical world and I was able to contact them and ask them to explain it to me in a way that I could understand better. They were able to take the time to talk to me until I understood it all. Once I understood it better, I was so much more at ease with what was about to happen… but, for that day, I was showing the world my brave and happy face when I really felt like I just wanted to cry. It felt like we had made so much progress forwards and he was just dismissing it all and setting us backwards… when, in fact, it was the exact opposite. He was recognizing the work that we had done thus far and giving us the tools that we required to push further than ever would be possible given the tools that we currently have.
So, why was I showing the world my brave and happy face, and what do I mean by that? Well, when people asked about how the appointments went, I said “they went pretty well, thanks. It wasn’t all roses, but all in all it was good!” and while that was absolutely the truth, I didn’t let on at all that I was upset or anything like it… why? Because I’ve created this perfect world in which there is no room for fear. There is no room for sadness. There is no room for doubt. There is no room for anger. There is no room for anything but positive. And most days that is perfectly okay. But what about the days when there isn’t really much positive that you have to say? What about when you’re having a bad day? Well, nobody understands. Because I’ve created my perfect world. I’m strong. I’m capable of dealing with anything that life could possibly throw at me. Because I’ve shown the world my positive face for so long that now it’s what they have grown to expect. So, when it’s not the positive face people say “what’s wrong with you??” and really, honestly, it’s nothing. Really, honestly, it feels like everything in that exact moment, though. That’s why it is crucial to have a strong support system behind you that you can turn to. That you can trust explicitly so that you feel safe showing them the face that’s not positive. The face that’s not brave. You need a spouse, a friend, a family member, a trusted member of your child’s team… someone… anyone… who you can freak out with. Someone who you can ugly cry to. Someone who you can vent to. Someone who won’t take it personally if you get angry with them… even when it really has nothing to do with them why you are mad. Everyone needs someone who has seen all of their faces and still stands beside them regardless of it all.
I want you to know that no matter what your true faces says at any given moment, there is someone, somewhere, who is feeling the exact same way as you are, who would give anything to know that there is someone out there who understands and will accept them no matter what their true face says at that exact moment. Be the change that you wish to see in the world. Start showing your true face more often to more people. Eventually it might just cultivate some amount of understanding and compassion.
What would happen if you showed the world more than just the one face that they are used to? Maybe we should all try it sometime. Maybe we should stand together and support one another rather than trying to tear one another down over showing their true faces. Imagine what we could accomplish if we were just willing to set aside our personal feelings and opinions and stand beside a fellow mom or dad who is having a hard day and help them to remember that it’s just a hard day it’s not a hard life. Because if we are honest with ourselves and others, we would realize that we need those people to stand by us in our dark moments just as much as they need us to stand beside them. If we could all speak up without that fear of who might think what about us, who might think that they can play the hero and “rescue” us when we don’t need to be rescued, who might say something to someone who really doesn’t understand… imagine how much easier our lives would be if we didn’t have that fear! Can we all just maybe extend a hand in offer of friendship rather than extending a finger to point out what is “wrong” in our opinions? Lend an ear to a parent who needs it, and keep what is said in confidence rather than listening to gossip?
Until Next Time, I hope this gives you something to think about.
Take Care Of Yourselves. ~C