Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}