People seem to think that special needs parents have a super hero cape that was issued on the day our kids were diagnosed. If they do, I must have skipped that line. Or else the dry cleaner lost it. I think that perception is because so many of us are able to function beautifully in crisis situations. Yes, I can handle surgeries and hospitals and waiting rooms and tests and and and.... What you don't see are the meltdowns that occur over the little things. The things like it taking 30 minutes and a crowbar to get a pair of pants over a leg not shaped like everyone else. Or the destroying of a $15 bandage cause you dropped it. Or taking a crew of people to accomplish a simple shower. THESE are the times when that mythical cape lay torn and tattered in a crumple mess on the bathroom floor that hasn't been mopped in a month. These are the times you don't see. Me screaming and crying cause I can't find a shoe. Or being so exhausted that literally sitting in this chair hurts. Or going postal on the person driving too slow in front of me. My imaginary cape tends to hide all that from the world. Or maybe it doesn't. Lately I have been tired and cranky and judgmental. I have ...
Would Someone Please Stop the Merry-Go-Round?
This post is one of those that comes into my heart and has to be published. It's messy and raw and real. I have these moments where I just need to write. I am having a moment now so please indulge me by not caring about the way it comes out. Would Someone Please Stop the Merry-Go-Round? Really. I am tired. and dizzy. and I just don't know how many turns I can take at this. The ups and downs and the constant round and round. Never really getting anywhere. No finish line to reach. When your kids are little and they have a special challenge like spina bifida you have so many people there cheering you on. Cheerleaders do it out of love for you, your child, and a tiny hope that they are right. They say, "keep going" "you are in the hard years" "it will get better". Theoretically, they are lying. I don't think it is even a lie they are aware of. I have told it so many times myself. Somethings DO get better, but mostly you just get stronger. You transform from the crumbled mess you were on the day you heard your child's horrific diagnoses. You become harder to beat down. You readjust your vision of 'normal'. It's who we are as humans, as mothers and fathers. We ...
Toy Story Themed Room | Decorating For Special Needs Kids
Project Objective: Complete overhaul of Carters room into a Toy Story themed room to accommodate the over bearing, over priced ($60,000!!!), and over ugly new Clinitron bed and possible lift system. This new equipment is necessary for his upcoming surgery. He will not be allowed out of it for 6 weeks after a 2 week stay in the hospital. A fun room is a must! Many, many, many themes were discussed for this new bedroom. The plan was to paint a large mural on the walls. Finally the Toy Story themed room won out and my plans changed. I love Toy Story but lets be honest, at Carters age this is a phase. If it gets him through the in-room prison part of this recovery than that is fabulous---but I am not about to make a permanent wall mural.Google to the rescue....I came across this Toy Story room done by HGTV that has a much more mature look and used it as the general game plan to get started. Progress: Day 1: Room gutted and cleaned Painted all four walls blue Moved dresser and armoire to room and placed along walls to provide as much open space as possible for access. New curtain panels with black out liners Plans: Make a giant etch-a-sketch calendar Use ...
Special Needs Moms Sorority
I am not posting a PR Monday post today because I found this instead and as I am typing tears are running down my face. I didn't have a particularly fabulous Mothers Day. It wasn't for lack of trying on my husbands side. It was teenage drama and lots of work. But when I opened my feeds this AM, Laura's post just struck me as something I needed to share as a belated mothers day to all the Mothers in the Children With Special Needs Sorority. I hope every mom out there had a wonderful day and to my special 'sisters' I hope this brings you happy tears.To You, My SistersBy Maureen K. HigginsMany of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were ...