Today is Halloween. My very own nightmare starts at 6AM. We wake up to tackle this not so SPD friendly “holiday” with a smile and hopeful optimism but that quickly fades. My DD is going to be the piggy bank from Toy Story because the costume is such that it just hangs over normal clothes with no buckles, straps, buttons, zippers, ties or elastic. We had planned piggy tails for her hair, which she never can tolerate, but she really wanted them.
When it came time to do them it was a no go. Okay, move on. Time for socks and boots. Her sock had a bump this morning..an invisible bump that isn’t really there because they are seamless socks but regardless this puts her in a tizzy for quite some time. Then we moved on to not being able to tolerate putting her stretchy pants inside of those boots. We did finally, after a complete disaster of a morning make it out the door but not without complete mental exhaustion setting in. As we get to class I start to feel the anxiety starting in ME of whether she will go in without a problem this fine morning.
This has been a constant struggle with us this year. That transition of leaving me, her comfort person, and going in the class. We have tried everything. Her teachers are saints I swear. For the last few weeks we have been giving her her weighted bear to bring in and I also hand her a piece of gum as she walks in for her to chew on through this difficult transition. It had been working fairly well….until this morning. Now she wanted nothing. She did not want to go home, did not want to swing, or do any heavy work. She finally brought me to the sensory room where she jumped for a few minutes on the trampoline and then we tried again. Nope.
I spent another 15 minutes sitting with her in hall trying to coax her in any way possible. Her teacher finally talked her in to swinging outside with her while I left. Granted it was 37 degrees, windy and raining but like I said …her teacher is a saint. So I left today and came home feeling whipped. Seriously frustrated, sad, angry, you name it. Tired of the endless battles that seem to define my life…HER life. Why must everything be sooo hard? Every morning is hard. Every transition is hard. Every look I get from people is hard. Every holiday is hard. Every meeting, evaluation, and doctor appointment is hard. LIFE is HARD!! I know I shouldn’t feel this way because I am so blessed to have this child and I love her dearly. She is generally happy, healthy, smart….but this SPD thing is TOUGH. It runs our life.
As I speak we have a friend that is going through a very serious surgery and I sit here feeling guilty that I ever ask myself or God why me?? Why me?? this is nothing right? We have our health! As a Christian I know that I am supposed to be thankful for the trials and challenges as they strengthen me and draw me closer to God, and I am thankful…really I am. But as a human I have fallen short and sometimes would just like life with this child to be easier. I know we all have challenges and this is what shapes us. I know I am thankful that God chose me to help this beautiful girl. I know I love her just the way she is. I know also that I am not alone in feeling exasperated right now. There are lots of parents out there that must feel the same at times right?
Well, this afternoon I am going to go back to school. I am going to put a smile on my face and attempt to go to both of my daughters parties. I am going to pray for stamina and most of all patience. I am sure at the end of the day, after the kids are safely tucked away for the night, I will lie in bed with a smile on my face and nothing but thankfulness in my heart..but right now it’s just hard and that’s okay too.