This Blows

While I try to be upbeat and hopeful, there are days I just can't keep smiling. Ronan looks so normal at first glance. Strangers don't understand why he behaves the way he does when they first meet him. It's painful in those moments to either try to explain things to them or to choose to move faster and farther away from them.

I struggle to envision Ronan as typically-abled on my own bad days. Some times I just want to blow off my responsibilities as a Mom but I know that I could never do that. I have five kids and they all need me in some special way. Ronan is my most needy most days as he has many medical issues that include mito disease, autism and cognitive delays. My life includes weeks that are tornado-like and should have high alert statuses to warn others what to expect.

Ronan walks through his life waiting for directions since he's told to do many of tasks each day. My other children dance around their brother as he moves at a slower pace. He's trying to get out of their way while they do their chores or finish their school work they do on their own. Ronan looks for activities that keep him happy and occupied (and me from constantly redirecting him). My children thrive on heartfelt encouragement and their excitement for life has struck a new interest in Ronan. He has started to look for approval at certain parts of his day which is so rewarding. He seeks more eye contact when he signs a request for snack. He's even trying to fingerspell some of his words! He waits for verbal praise when he is able to say a word since it has required so much oral-motor planning on his part. Ronan's patience level is much lower than my other children's but he works oh so hard at that when he really, really, really, really wants his movie on right now and please, please, please he is signing for me to turn it on quickly.

Ronan has also had a new surge of awareness to our world and in his own family. He's seeking me out more even though I'm the one that makes him do so much work like his ABA and speech therapy homework and activities. I don't mind this seeking Ronan is doing since it includes hugs and cuddle time. I cherish these affectionate moments when Ronan puts down a toy that he's become attached to, walks directly to where I am and puts his arms up for a hug. I immediately embrace him because for years any type of hug I attempted to give him would have been pushed away. The sensory issues were far too severe to allow for that. These hugs I'm greeted by are treasures because the hug isn't a 'quick thankyouverymuch; hug; he won't let go of me. All of a sudden, the quick hug I'm expecting turns into a crouched down, sitting on the floor still holding Ronan in my arms and now nesting in my lap hug. We rock slowly back and forth in silence and let the world wait for us.

Another surge of awareness is happening too. We increased some of the therapy and educational opportunities for Ronan. Just today, after years of hoping and wondering and waiting, another new skill emerged. Ronan's private speech therapist has been working with Ronan for only 3 months and has done more in those few months than other specialists have done ever. She got Ronan to blow through a straw. I witnessed a magical moment today as my child sat and waited patiently and willingly to do just what Miss Erin was showing him to do. For Ronan to accomplish this major speech goal of blowing through a straw to make something else move will certainly open more doors for him. His vocabulary of 4 words last month also grew today at therapy when Ronan identified a ball by saying ball for Miss Erin. He now have five words!

While most of Ronan's days are full of struggle just to do the simple things like getting in his chair without falling over, or scooping his food without it spilling out of the spoon, Ronan is victorious in some manner. Each day he faces more challenges than I will ever know. Each day he teaches me and gives me a chance to learn more and do better than yesterday. He is helping me to overcome the pain of what if things had been different, why did this happen to you and why did it happen to me too. I may just want to blow things off but that little hero wrapped up in a seven year old's body keeps pushing me along. I can't wait to find out what we'll learn together tomorrow.