Special Needs Mom

There is something I have learned about being a special needs Mom.  It's a hard lesson to describe, but I'm going to attempt because I think there is something really profound in it...and liberating. 

One of the struggles that I have had in this role is feeling like I can never do enough.  There is an expectation that I will have all the answers...and if I don't, that I will research the crap out of something until I do. There is an expectation that I will advocate for my child--that I will, with righteous indignation, stand up for areas where he is systemically disadvantaged because of his disability.  This requires me to watch everyone and every organization that he interacts with like a hawk to ensure that he is not discriminated against, given less than someone else, or in some way not treated fairly.  There is an expectation that I will fight for more. There is an expectation that I will never stop trying stuff--never leave a stone unturned.  The fads and fashions when it comes to treatments for autism and other disabilities (natural and medicinal; western and eastern medicine; supplements, diets, brain mapping, cranial manipulation, etc. etc) need to be understood and explored if I am to be a good special needs Mom. 

So I have done a lot of that...and when I have run out of energy from wiping his cute little butt and protecting my arms, neck and hair from his dagger-tipped tentacles, sometimes I just feel bad about what I no longer have the strength to do because it is expected. I talk to other Mom's who seem to have an endless supply of energy and passion for their kids which makes them capable of meeting those expectations, which certainly is admirable, but is also exhausting.  Comparison is the devil, so obviously that isn't a constructive train of thought; however, it is natural. 

Here's the thing I realized today as I was putting Matt to bed.  He asked me to go to bed which means he was motivated to get there, which means he was cooperative and adorable.  He dove into bed and I crawled into his tent with him.  He chose a book which we read together and then he chucked aside, rolled over, and snuggled his large body up against me, holding my hands between us.  That's his position for us to say prayers.  When I started praying with him and specifically for him, I realized that I spend very little time praying about the things that I spend the most mental and physical energy on as it relates to my role as his mother.  I have been stressed out of my mind about his regression and researching, trying new seizure meds, talking to specialists, talking to friends, talking to myself...but i have spent very little time talking to God in a very real way about all of this.  I have not asked Him for help to make it happen.  I have almost been so caught up that I neglected the most powerful use of my energy--to ask the Source of a miracle to be involved in this process.  I have asked for guidance, but I had yet to ask for a miracle. 

I talked to my kids tonight and told them how worried I have been and how I forgot to ask God to help with the very specific things i'm concerned about--help Matt to articulate words again and to communicate in a way that helps us better understand and meet his needs.  I asked Him to help Matt remember how to go potty in the toilet and for this incontinence to go away. And....I prayed that I will have the energy needed to help facilitate that miracle--to do all the work that is now required in conjunction with my faith to help my boy make the progress I am so desperate for.  

Shame on us as parents, specifically as special needs Moms, for thinking we have to be super-heroes.  We can still act like them, but there is a higher Hero that we need to involve and stop thinking we need to carry it all on our own.