Have you ever noticed how many special needs blogs always revolve around the negative? I know I certainly have my fair share of sad, disheartening, frustrated, heartbroken, and tired posts. I started to think today about why that might be since I know personally I have had some shout-from-the-rooftop moments this week with Caden. When I start to think about how to share that news, though, I hit an immediate writing block, and I’ve been spending some time trying to figure out why that block presents itself at the same time the joys and victories present themselves.
I guess I need to add a bit of a preface here; I love to write. I started this blog because I wanted a way to keep all of the kind and generous folks who helped us fundraise for Elf in the loop after fundraising was completed. Then I started to think that maybe someone somewhere might occasionally relate to or learn something from one of my experiences. And another reason, although selfish, is simply that I-Love-to-write. That love doesn’t come without fear though. Although I’m my worst critic, I still experience a flutter (or a herd) of nerves and anxiety when I hit the post button. I try really hard to keep my more controversial thoughts to myself and to only write from my experience, and yet I’m sure from time-to-time I inadvertently hurt someone’s feelings or step on someone’s toes.
Interestingly it is in this vein of thought that I found my answers as to why that mental block exists when it comes to sharing the good, better, and even great news.
Any day that life in our special needs family is hard, I know that someone is having an even harder day. But worse, any day that we are experiencing a victory, someone is having an unimaginably horrible day. Someone has lost a child to the same rare disease that we battle on a daily basis, but at least our children are still here for the fight. Someone’s child has experienced a significant regression and has lost all of their vocabulary and verbal voice. Someone has had to make the heart wrenching decision to consider a home or facility for their child. Someone has had to call the police because their child has grown larger and the parent is no longer able to control them. Someone’s child has wandered and rescuers haven’t located them yet. I guess I worry about sharing news like the fact my son received his first friend phone call yesterday and made his first friend phone call today because I don’t want to make friends feel bad if their child can’t talk or doesn’t yet have friends. What if sharing that he is making leaps and bounds when it comes to sounding out words, makes someone else disappointed over where their child is? And so on.
Outside of the special needs world though, I don’t think friends and family often know how to respond to good news from a special needs parent. People don’t know how to respond when I share that my son can now tie his shoes (and yes I do have a video for that) when their own child learned how to do that years go. They don’t know what to say when I express gratitude and relief over getting approval for Caden’s Project Lifesaver bracelet because what parent plans to have the police department track their child as needed. And after all, unless you’ve experienced your child losing all language, how can you really appreciate or know how to respond to my glee over the fact my child with autism who lost all but 2 words just a few years ago actually asked a question when we were at the National Eagle Center a few weeks ago in a room full of strangers? I imagine that for many people even the proud and exciting news that I have to share is met with sorrow or even pity.
But here’s the thing, if I’m going to truly tell Caden’s tale then the shout-from-the-rooftop moments have to be celebrated right alongside the challenges and heartbreaks. It’s only out of heartbreak and challenge that I learn how precious the victories and accomplishments are. Maybe if readers can occasionally relate to or learn from the challenges, special needs parents or friends and family members might also be able from time to time to relate to or glean hope from the accomplishments. I’m working really hard this year to try to focus on the positives as much as possible. Much to my family’s dismay, we have a memory jar on the kitchen counter in which we place the special or memorable moments of the year. That jar is filling up nicely and I’m hoping it will help remind us of sunnier days when the storms hit. After all you can’t experience the rainbow without the rain.
And now for that video…….