For 4 years, I have been a part of a community I never wanted to be in. I never wanted to be a parent to a child that was medically fragile or had special needs. I realize that in and of itself sounds terrible but it’s the truth. I, like most parents, prayed and hoped for a healthy baby. It was all I cared about during my pregnancy. Then I gave birth to a precious little boy that was incredibly adorable but he was anything but healthy. I found myself thrust into a world of parenting I was not prepared for and a world of endless trauma. I have learned in this community there is no recovery. The only thing you can do day to day is put one foot in front of the other, but the trauma is on going. Every day we as parents in this community are faced with insurmountable stress, sleep deprivation, trauma from diagnosis, health scares, hospitalizations, behaviors, and managing the care of a child that often requires more than 5 children put together.
Trauma and Post Traumatic Stress makes many of us in this community a hot mess of emotions ranging from sheer happiness to great fear mixed with a ton of anxiety and a sprinkle of depression. We lash out when we shouldn’t. We say things we wish we hadn’t, and we behave in ways we wish we could take back. Unfortunately in this ever moving world of fast paced therapy, appointments, medication schedules and school we don’t have time to stop and think. How are we behaving to one another? How are we treating those in the community that are fighting the battle with us? How are we showing our love and gratitude? Some days we simply aren’t – at least I know I am not. I try my best but it doesn’t always work.
Many of us seek support and look for it any place we can find it. Often times the support we crave is not found. Or when we find it, it’s online and words are taken out of context, tone is unreadable, and things said in jest are taken personally. The truth is we are all very isolated, stuck behind a computer, searching for anyone who gets it, and a lot of the time we are horrible to these people. We say the most awful and mean spirited things, we enter in to competitions with other parents on whose child has it worse, and we further dig ourselves in to pity parties. We find ourselves becoming keyboard warriors with strangers we have never met, and we say things we would never say to anyone we actually know.
I will tell you what – I’m done with it. I’m sick of being a part of a sub-community that behaves so atrociously to another. We should be supporting one another instead of ripping each other apart. We should not be fighting about what one child gets vs another, and we should not be comparing our children against one another. I try so hard to focus on the day to day of what I can do for my child. I try to remind myself something very, very simple – and I often repeat it to myself daily – WHAT SOMEONE ELSE DOES FOR THER CHILD DOES NOT DIRECTLY EFFECT ME. Did you read that? Did you see that? It’s pretty simple. If someone is making a choice for their child, I have a choice to form an opinion, offer them my two cents, or I can simply support their choice and know in my heart they are doing their best for their child. I’m done living in a sub-community that is bent on shaming people that we are there to uplift and help. I refuse to be a part of the toxic part of this community.
I know it’s hard to hold it in sometimes. Trust me, there are days I want to scream at others and their choices. But guess what, it’s not my circus, and the kids aren’t my monkeys. My kid is the only one I should be worried about helping, and I shouldn’t be worried about what another child gets or doesn’t get. Conversely, I ask anyone reading this to not worry about the services my child receives, the equipment he needs, or the benefits he gets via the government. I’m navigating this for him, and I’m doing it all to help him. As I assume most of you in this community are doing too. So we have a simple choice to keep our negative opinions to ourselves. We have a CHOICE to be supportive and not tear each other down. I am going to be a part of the solution. I’m done being a part of the problem.
Our community is diverse, and like a knitted blanket made from many rolls of yarn. Every single thread is different from the next, and all of our stories are just a tiny bit different. We can use our words to harm one another or we can use our words to help one another. There are many of us in this community that just want to help each other. If you find yourself feeling the need to yell at that screen, put down your laptop or phone. Please find a way to tuck away your keyboard warrior for a moment, and take a deep breath. Step away, take a walk, and maybe grab a bite to eat. Nothing in life is worth yelling and screaming at someone that simply needs support. We are all tired. All of us are pulled thin because our children need us to be nurses, therapists, doctors, teachers, social workers, advocates and parents. We will never, ever know what is going on in the other persons home. We will only ever know the small amount they choose to share. I’m going to start by assuming the best in all people. Instead of fighting about what I don’t have, or judging another person’s choice for their child, I am going to celebrate their choice and their advocacy! We are all in this together. We can all strong in unity and advocacy! Let’s stop shaming one another and start praising one another!