I cannot tell you how many times I have written this blog post, then chosen not to publish it. And I’ve played it over and over in my mind many more times than that.
You see, having a child with any sort of “special need” can be, and oftentimes is, a very lonely place. I am thankful every single day that Jackson’s Progressive Infantile Scoliosis is a “special need” that allows him to live a fairly normal life. We are blessed beyond measure that it has treatment, is generally not a death sentence, and doesn’t affect his mental faculties.
That doesn’t mean it is easy.
That doesn’t mean we don’t need support.
Justin is my “rock” when it comes to these emotions I’m finally expressing publically. He hears them all the time. His philosophy is “if you don’t have any expectations of others, then you won’t have to be disappointed when they don’t come through.” He’s 100% right. But … I’m a woman … a mother …. a tiger mama …. and I don’t think that way.
I am disappointed, angry, often flabbergasted, and mostly hurt.
When our family experiences weeks like the last one … and the upcoming one … I feel so alone. I feel like, certainly, no one cares about what we are going through. Because if they did care … they would call me, email me, text me, send something nice for Jackson, or make us a meal. Generally speaking, none of this ever happens.
And … I’m going to let you in on a little secret … while I totally understand that this is meant as a nice gesture: “Let me know if I can do anything” is a meaningless statement to anyone in crisis (not just special needs families). In blunt honesty, we are too exhausted to ASK you for favors … and, albeit, probably too proud. Actions speak infinitely louder than words.
To outsiders looking in, maybe Jackson’s condition is “just scoliosis” because they don’t understand. Trust me, I blame a lot of things on ignorance or else I’d never be happy. But, let me tell you … PIS is quite a different beast. Every 8-10 weeks for the last year, our baby has been x-rayed, drugged, intubated, poked and prodded, and bound up in a 3lb plaster body cast. Can you imagine having surgery every 2 months? That’s not even considering the amount of traveling we do, the expenses we incur, and the stresses of constant phone calls, faxes, and doctors visits. And then there’s the mistakes … the many costly, painful mistakes that Shriner’s Hospital has made on Jackson. And we cannot even see the light at the end of the tunnel yet.
Sometimes I wonder if people just don’t know what to say, so they don’t say anything at all? Or, going through something this monumental is so foreign to most people, that they cannot understand its toll? Either way, it hurts to feel so forgotten. I often reflect on my life before we were touched by a “medical condition.” I wonder, wholeheartedly, if I would be the same way if it wasn’t happening to me and to someone else’s child. Somehow, I don’t think so. I think I would remember.
To the choir members out there … all the “special needs” mamas reading this blog … thanks for all the times you’ve SAID IT BEST on your blogs when I couldn’t speak. I sincerely hope that you’re out there in cyberspace nodding away with me like I have so many times with you. GGGGrrrrr …. Thank you also for being the ones … who between programming medical devices, filling prescriptions, traveling across the country, and wearing your many hats … find the time to check on us. We appreciate it more than you know (or maybe not, because you do know).