I have read a lot of blog posts about how tired parents can get. And boy, can we get tired! It is a bone aching tired that sucks at your soul. We all know that tired feeling. Ugh
But here is a confession...sometimes I am more than tired. I am frustrated. As a mom to a kiddo with special needs, this frustration takes on a new dimension.
I am frustrated with being a mom to a mom to a special needs kid. I am tired of the constant redirection. I am tired of going over the same thing one million times a day and then going over it again the next day. I am tired of looking for inchstones instead of milestones. I am tired of diapers and poop and messes that should have been done with years ago. I am tired of absolutely no alone time...not a moment. I am tired of the toys in my house being therapeutic as well as toys...nothing can have one purpose...just fun!. I am tired of doctors and nurses and specialists and insurance fights and IEPS and always being a cheerleader.
I am so very tired of people telling me what a hero I am and how they could never do what I do. I am not a hero...I am doing what I do because there is no other choice. I am not doing it because I love pushing tubes into my daughter to give her medication. I did not dream of the day I would put a diaper on my six year old daughter at night because she still isn't potty trained at night.
I know there are so many children who have it tougher or worse and I am grateful...so very grateful for what I have. But...it still isn't what I dreamed of for myself or my daughter.
Yes she has made me a better person and taught me so very many things that have enriched and enlightened my life and I would never wish her away. Never. I would not wish her to be someone else. Never.
Maybe I wish I was someone else...someone who could always see those blessings and the positives instead of getting bogged down in the day to day. I wish I was someone that these kinds of things came easily to instead of someone who is frequently frustrated. I wish I held infinite patience and rejoiced when my daughter interrupted me for the one millionth time to ask if dinosaurs were allowed. I don't even know what that means. I wish I would never got angry when she screams the entire time I comb her hair or that I would never felt my temperature rise when we have the same melt down over the same temperature of the glass of milk she insists on having the same way every day.
Often, I read those blog posts from moms and dads in the trenches and they make their lives sound mystical and magical...almost religious. I feel like I am doing something wrong or that I am completely inept. Maybe my soul is simply dark and unlovable but I have to say...there is nothing magically about laying on my screaming and biting six year old in the middle of a store so she doesn't hurt herself while people look at me like I am raising a feral child. There is nothing mystical about changing poopy diapers on a six year old on a public bathroom floor because the changing tables are too small for her. There is nothing religious about blending medicine and food in an industrial strength blender and then injecting it in a tube that connects to my daughter's stomach because she has refused to eat anything but four cheese puffs a day. Scrubbing the "pokies" out of her clothes every morning, finding clothes with no zippers or buttons or denim that touches her skin, always having to maintain skin to skin contact when she is awake, a limited diet of hotdogs and macaroni and cheese (on the good days) everyday, watching the same shows, listening to the same songs, following the same routine....none of these things seem other-worldly to me.
My life is not mystical or magical. It does not bring me onto some sort of zen plateau. It is not a Hallmark channel, feel-good, movie of the week where everything ends up happily every after. It is messy. It is hard. It is frustrating. At times I even (to myself) yell out about the unfairness of it all. There is no happily ever after. My daughter will not magically "overcome" any of her special abilities. We will always measure in inchstones. Our learning curves are not on the same field as others.
I am grateful for my life. I am grateful for the gifts I have been given (and there have been so many) and I am happy...even though I am tired into my bones. I would not change my life or my place in it. It is MINE, messes and exhaustion and all.