Do you really understand how I feel?

Disclaimer: This post was originally written in February 2014 but was never published.


Remember I said I was going to address the last group of people mentioned in my last post? If not, read about it here. Well, I noticed I barely even covered the other 2 groups of people. I really just addressed the friends that want to help us cope but go about it in not exactly the best way.

So let me address the "I know how you feel" and "I get it" people. They more than likely don't know how you feel and don't get it. Unless, they've walked your and your child's walk, they will only be able to imagine how you feel. And even if their child has gone through something similar, our stories all differ in one way or another. So there are things I can relate to and some I can only imagine. And sometimes even that is hard. But that's OK! What we all need to remind ourselves of is, that those kind of friends really want to help but don't know the right words to say. At least the majority of them. So be patient with them, smile and say thank you for listening. You don't need to tell them that they really don't understand, they more than likely know it already but simply didn't know what else to say. It can be difficult to find the right words to say. Friends, let me tell you, sometimes the best thing to say is nothing at all. A hug, holding our hand or just a comforting smile can go so much further. Being honest about the fact that you can't even imagine how to feel is ok too. You don't have to know the right words to say. All we want, is to know you're listening and that you'll be there if we need you. That's what means the most to us.

Now about that last category, I've had friends who told me "he doesn't look like he had a stroke" when they found out about Isaiah's diagnosis back when he was a baby. Back then I had mixed feelings about this statement, on the one hand I knew most of them meant well. But at the same time I couldn't help but think "what do you imagine a stroke survivor to look like?". At the time Isaiah was a baby, so he didn't do much just yet. He wasn't sitting up yet, crawling, walking, talking, so his disability was barely visible at all. He clenched his right hand in a fist and had a hard time pushing up on that hand but for the untrained eye he looked like every other baby. Pediatric stroke shows itself in many different ways, some kids had a stroke and there are no issues at all. Hence so many kids going undiagnosed til later in life. Others were so affected by it that their disability is more visible. Not every disability is visible, someone with a seizure disorder (many stroke survivors have seizures) for instance, does not look a specific way. Now that we've come a long way thanks to therapies and hard work, I'm reminded what an amazing fighter Isaiah is when people say it. Let me tell you just exactly how hard this boy fights. As you already know, Isaiah has right sided hemiplegia, weakness in the right side, because of his stroke. He uses the right hand really well but mainly as an assisting hand. Lately however, he's been trying more and more to use the right hand primarily and assists with his left! Especially at dinner time. He even gets upset when we offer him his fork or spoon and try to put it in his left hand!

Time changes things. 2 1/2 years ago I was more upset at people saying he didn't look like he had a stroke, today it makes me proud of how far he has come. I initially wrote this post because of an inspiring comment from a fellow stroke survivor parent. But also because I came across so many parents being mad at everyone who doesn't know the difference between a brace and a cast and instead of raising awareness and educating them, they unintentionally push them away. Don't get me wrong, there are plenty of moments when I feel everything but kind enough to explain. When a bystander tries to tell me what to do about my son's meltdown for example, thinking he's just having a tantrum and not knowing the difference. Or a friend telling me he's going to grow out of it, whether they refer to the seizures, the sensory issues or the stroke altogether. Sometimes it is not easy to smile and explain but at the end of the day it makes more of a difference than pushing someone away because you felt their statement was ignorant or hurtful. By explaining in a kind way I may increase their knowledge and understanding and therefore change their view.

Love,
Mimi