Recently I have had the good fortune of joining a few RSS groups on Facebook – thank you again for the acceptance. The support of these groups is amazing, especially for parents who have the challenging, yet very rewarding duty of raising a child with Russell Silver Syndrome. My Mom would have reveled in these groups, but since I was born before the internet was invented, my mom had to rely on “winging it”.
I have read through many posts on the groups pages and have seen many pictures of these beautiful children and families. Although I am grateful that social media can be a positive reinforcement for support; my heart also breaks because of how scared, frustrated, and even at times sorrowful these posts can be. The questions and the uncertainty of the parents taking their child to seemingly endless doctor’s appointments hoping for answers with a diagnosis. The pictures of diminutive children and young adults who smiles and faces always make my day. The sheer unconditional love behind these posts, it’s an amazing thing to view.
As child of RSS and observing my mom trying to raise a child with RSS; here is some insight on a few RSS main areas for you parents. Just a disclaimer I am no parent and I am not telling you how to raise your kids. Think of it as GPS on how it will be with having a young child with RSS, you can of course choose your own route. These words of wisdom are for the parents of younger kids; I’ll write about the pre-teen and teen years later, that’s a whole other platform. I’m sure for many of you parents, you already know and can tell me to “shut up”, though I really hope you don’t.
Getting the diagnosis for RSS. I asked my mom what her initial reaction upon receiving the news of the diagnosis. She said at first she was scared, she never heard of Russell Silver Syndrome, of course you will be scared of something we don’t understand and that will have a lifelong affect on your child. My mom also felt relief because she would finally get some answers. Then there is the feeling of guilt; my mom confessed she felt like it was her fault that I got RSS, because she carried me and mother’s always naturally feel responsible for any problems that their child develops. There is nothing to be scared of, your child will be healthy; they just need a bit more attention and care. Your child has just as much as a chance as an average size person to conquer the world. Most importantly, IT IS NOT YOUR FAULT! Sometimes, life just gives us literally the short straw; there is no rhyme or reason. Mom and dad, you are our biggest supporters, we need you to stay strong, so we can grow strong for you.
Doctor’s appointments will be frequent, and they are not fun at all for us kids. So, my mom used to take me to get ice cream or out for my favorite food after each appointment as a negotition to not make a fuss; us RSS kids are underweight and slow eaters, so buying us extra calories and talking about the appointment and just talking in general while we slowly eat our food is a win-win situation. Just remember, let the kid pick the place, we have no choice but to go to doctor’s, so at least give us the choice to where we want to eat.
Growth hormones! Oh, the memories of growth hormones! The daily shots of hope! They are really not that bad, but if you have your child go on growth hormones, do not miss a dose, because every dose truly is our only hope for a few inches. Parents, I don’t care if you went out and popped some much deserved bottles, as soon as your Uber gets you home, give your kid the shot – if you’re too lit then be on the safe side and have dad do it.
Some of us RSS kids don’t each much and when we do, we take FOREVER. So, please be patient. You should chew your food at least 30 times before you swallow; so yea, practice that eating habit.
Last, but not least, for the exception of treats after doctor’s appointments…Do not give us special treatment – this is especially important if there are siblings. We can do almost anything an average size kid can do. If you want us to do chores, then you make us do chores; if this includes washing the dishes, then pull up a chair kids! There are no excuses for us RSS kids to get out of learning to be responsible and respectful at home and in life period.
I hope these words help you a bit and give you a little insight on what is to come. Being a parent of a RSS child is not easy, but then nothing amazing like raising children is ever easy – no matter what size.