Wow! I use blogging/sharing as therapy. Since I haven’t done it since January, that might explain my need for, well, therapy! In the online sense (and real life, too), my absence means that I’m caught dead square in the middle of a massive shit storm and am living in survival mode. There is a popular saying…what doesn’t kill us makes us stronger. Well, I can honestly say that I’m already fairly strong so the universe can stop trying to kill me now. No matter how many times I feel like the universe is giving me a big “*$%^ YOU,” I have to keep marching. I guess when things are out of your hands, you have no option other than to put on your big girl panties and keep moving forward.
The past six months or so have been a huge struggle for Shane and our family. Just when we feel like he’s making huge strides in many areas, there are others that creep up and send him tumbling backwards. As a mom, nothing breaks your heart more than seeing your kid be unsuccessful in simple things most parents take for granted like playing with the neighbor’s kids, going to the mall, going to Times Square specifically to go to Toys R Us and not being able to go to the third floor where all the super heroes are because he’s deathly afraid of glass floors, high ceilings, stairs and escalators. Talk about feeling totally defeated for a little boy to talk about something so much and be so excited then not be able to do it. I would probably throw myself on the floor and kick and scream, too.
We’re in the process of building a stronger support team than we’ve had in the past to help Shane navigate the world. We’ve added a developmental pediatrician (priceless), a developmental neurologist (pure craziness…think Dr. House with a great bedside manner), a pediatric psychiatrist and a vision therapist (new and yet to be determined). We have a referral to a new pediatric neurologist and an appointment with a geneticist in November…all in an effort to do everything we can. With a well-integrated, invested team in place, I feel more hopeful about the future than ever and am excited to hear their recommendations and plans moving forward. I don’t know how to express my gratitude to each and every one of them for taking the time to get to know and love Shane and being able to see him for the loving, sweet, thoughtful, funny little man he is. The staff at Cyzner has be invaluable and I am so thankful for their guidance, patience and dedication to Shane and our family.
One thing I’ve learned in the last seven years is that sometimes you blame yourself for everything. At least, I do. What could I have done differently? Did I do something wrong? I’ve cried a lot and taken a lot of time to reflect on life…what could’ve been, what is. There is something I know and I’m taking the risk of ticking off a lot of people, but I’m going to say it, anyway. I have friends who have children with special needs of varying degrees and we’ve discussed it so I’m not alone when I say this. When navigating the slippery slope we’re climbing, we often encounter people who might offer “help.” There are two things that, as a mom of a child with special needs, I do not want to hear. Please do not say that God gives “special children to special people.” I am no more “special” than my neighbor, friends or family. What kind of god would create “special” children who have to struggle daily with any disability? Or anyone else who suffers with pain or illness? Not a very nice one. I understand that there are many religious philosophies and I get that some people have to believe that there’s more to life than this, that there’s a better life beyond this one and will believe regardless of anyone says. They have to believe for various reasons…afraid of death, fear of having no purpose, not believing in yourself and your own strength. Do what you need to do to feel better, but please don’t tell me you’ll pray for me. Because you know what? It’s easy to go to bed at night, clasp your hands, say a prayer (for those in need and your favorite football team), then get a peaceful night’s sleep. But, one pair of working hands does more good than a million clasped in prayer.
I was raised in the south in a Baptist church. I was baptized and wholeheartedly believed what I was taught. With exposure to different people and cultures, I realized that the world was not full of God-fearing Christians and that there were so many different philosophies. I always considered myself to be spiritual but in recent years, I’ve called myself an atheist. But now I know that I’m not an atheist. I’m a humanist. There, I said it…MY NAME IS JANET AND I’M NOT A REPUBLICAN, LIBERAL (that’s pushing it), DEMOCRAT (although I do think donkeys are cute), A CHRISTIAN OR AN ATHEIST. I AM A HUMANIST.
/ˈhyumənɪst or [hyoo-muh-nist or, often, yoo-]/noun
Stay calm, carry on and listen to this song.