I really want to write about something positive and uplifting, but I feel instead to be completely open about how I'm feeling in hopes that I will appreciate the good days even more as I reflect on the fact that I've come through some pretty tough ones.
Unlike the majority of my hard days, this one has nothing to do with poop. Perhaps I should be relieved, but poop can be cleaned up in a matter of minutes (I've gotten to be pretty efficient--me, a pair of gloves and some Lysol) and I have a feeling this is something I might struggle with off and on for years.
There are a few things I feel that I don't think I should.....or at least wish I didn't. Let me explain.
I feel jealous. Lately I have really struggled as I have looked at the lives of my friends and even other family members and realize what things could be like if Matthew didn't have autism (and the list of other diagnoses). I know that we are blessed by our sweet boy--that he is a gift in our lives....but there are days when I know his gift is to teach me patience and I don't want to learn it. And there are days when I know he was sent to me to teach me not to be critical or judgmental and I just plain don't care. I am SO exhausted by my life and wish I had the option of going places with my three children by myself without running the risk of getting literally stuck somewhere because I am physically incapable of carrying my 50 lb screaming child back to the car when he is overstimulated and loses it. I wish I could get on an airplane and not get physically ill as I anticipate what could happen on the flight...or what will likely happen the first night when he doesn't sleep and keeps everyone up. I envy the families around me that have what I envisioned for my life.
I feel scared. There are days when I literally wake up nervous because I don't know what I'm going to do to keep Matthew "busy" that day. If I don't have every hour scheduled, I get anxious because his unstructured time is literally dangerous...those are the times he gets most out of control. I am afraid that he is my child...and I don't know what to do with him. And if I think about the things I could possibly do with Matthew that might be productive and helpful to him, I have two other children which are likely to sabotage because they are desperate for my attention as well. I am also scared of what I might do when I get frustrated with my kids. I'm scared I will yell more than I should and push the other two away because my discouragement with Matthew sometimes comes out sideways at them.
I feel overwhelmed. I feel like I am constantly making decisions, prioritizing medical and therapeutic care, and receiving information from a thousand well-intending friends and professionals. I am at the point now where I almost don't know what is and isn't working, what we have and haven't tried, what our next step should be and I'm too scared to abandon anything that could possibly be contributing to any of the progress we have seen over the course of the last 9 months. I'm sick of being gluten free, caisen free, worrying about fiber and raw/organic this and that. I'm exhausted at the thought of planning my grocery shopping and knowing that I need to go to three stores to get all of the specialty foods and herbs and supplements that we will need to get through the next week.
I feel less-than. I watch other Mom's who do so much for their children and find such joy in motherhood and feel like I am less than I should be as a mother. Other mom's parent children with special needs and do it with such grace...why can't I?
I feel tired. I think that is the crux of it all because when I am tired, I have a difficult time keeping perspective.
NOW....all of that being said, let me tell you what I believe.
I believe that if I allow myself to become a product of my comparisons, I will never measure up. Our family is not and will never be like other families because our family is special. Imperfect, exciting, challenging, but oh so special.
I believe faith can conquer fear. I have been trying to listen more to what I am supposed to be learning each day because I recognize I don't have all the answers. Rather than live in my fear, I am trying so hard to be full of faith and, though my prayers feel a bit redundant at times ("please give me strength beyond my own so that I don't lose it on my children today"), they aren't bouncing off the ceiling. I am changing as a person because being full of faith requires deep, deep humility and I promise you that I have never felt more humble, more teachable, more open or more desperate.
I believe we can sometimes see simplicity on the far side of complexity. In the midst of my million decisions, there is a simple truth and that is that I'm raising a child of God. He is mine for now and I know that, in the quiet moments when I consider who he is, I can be given glimpses of the divinity that lies within him and realize that he is powerful in his own way...that Matthew has a mission here on this earth and whether he does 8 or 10 hours of ABA or sees a functional neurologist or cranial osteopath, he will still accomplish that mission.
I believe I am more-than enough if I am trying my best. GIving in to less-than will become a self-fulfilling prophecy and I can't afford that.
So though it is OK to feel how I feel and I'd be lying if I said that I can always see what I believe clearly through the density and intensity of some of those feelings. But I guess I still have the responsibility to rise above it. I know that I am surrounded by people who are cheering me on and that, above all the good advice in the world, sustains me on the hardest days. For now, I think I'll just go to bed and hope that my children take mercy on me tomorrow :-)