Wednesday, April 26, 2017

Was Blind, but Now I See

This picture describes how I feel right now.

Matt is in a really (emphasis on the really) hard phase right now.  It hasn't been a very long phase, but it has been an emotionally taxing and frustrating experience this last week or so to "love" Matt.  I always love him, but to show him love is like ramming your face into a net.  There are little parts of you that get through--sometimes he'll kiss or love those parts.  Other times he'll scratch the crap out of the skin he can access.  Either way, I feel like I'm hitting a big, fat, ugly barrier when I try to help, serve, and love my son.  But at least we are both standing at the net.

Since starting Matt on epilepsy meds, he has made incredible progress--verbally he exploded.  His awareness of the world around him has improved.  His receptive language has made a huge leap.  His desire to interact has increased.  Unfortunately, in spite of all of that progress, Matt has suddenly become incredibly frustrated and increasingly anxious.  We are on a mission to figure out why, but I feel like I'm, again, hitting the net.  Detective work is SO HARD when the person who holds all of the information lacks the ability to share it.  

Matt's explosion of language has made him realize that he CAN his desire to interact and the intensity of his interactions has gone up.  He has a Rolodex of words that are familiar and, when he gets amped up and anxious, he scrolls through those words over and over.  If you don't respond, he gets closer and closer to you--literally in your face--and shouts them at you.  When you respond and give him attention, he is lost as to what to do to carry on the joint attention.  If you ignore him, the intensity increases.  We go through this cycle hundreds of times a day. 

Matt notices more and more things, but then that gives him more and more things to impulsively grab at, hit, throw, bang, or slam closed.  His receptive language has increased so he is able to follow instructions better.  He is also able to understand parts of conversations and whenever you are attempting to have a conversation with someone other than him, he will yell, scream, scratch and otherwise attempt to interrupt to the point where you literally feel like you have to hide in the bathroom to chat.  Todd and I pretty much wait until he is in bed to talk. 

Matt wants my attention so badly (and unfortunately, this is moving past me to others as well) that he will grab (translate scratch) your face to get you to look him in the eye.  When you attempt to ignore him because, lets face it, reinforcing face grabbing probably isn't the right thing to do, he will start scratching you other places.  His favorite on me is up my shirt.  He got the teacher in the chest the other day.  He has drawn blood on both of his tutors in therapy.  And, for the first time, he went all "cat" (as opposed to "ape") on Todd last night and attacked him with his cat-like ninja-fast killer nails.  

So in a house with three children wanting your attention and one who demands it more loudly than the others, you can imagine what the noise level, intensity level, anxiety level, and all-round mood feels like.  Its super fun. 

On Sunday at church, Matt let out a blood-curdling scream in the middle of the sacrament....that is after cycling through his usual "get me out of here" phrases, like POOP!!! The scream was disruptive enough to earn him an exit which reinforced what he wanted.  We tried a few other times to sit in church, but Matt was having none of it.  When I went to take him into Primary where he was supposed to be sharing a scripture that day, I simply told them there was NO WAY he was going to do that and in response, Matt scratched me across the face.  I was so fed up that I burst into tears in front of several shocked people and made my not-graceful exit into the hallway where I ran into a few more people that I was embarrassed to have see me in my overflowing state.  Once composure is lost, regaining it with any sense of security is a little challenging.  When we got home, for example, Todd suggested I take a break, not even really knowing what was going on.  Again, I burst into tears at the sensitivity of my good husband and made my way up to bed where I spent an hour in the fetal position with kids interrupting every few minutes because, let's face it, in a house full of littles, there are never any real breaks.  

On Monday, things were horrible--I think that was blood-drawing day in therapy. I was great during the day (oh yeah....he was at school and therapy), but after he had been home for just a short while, I felt like all I could do is numbly go through the motions of being a Mom.  By Tuesday, things were explosive, but I had an appointment with a doctor that day which was comforting.  If the goal was to let him see what Matt is really like at home right now, he gave him an Oscar-worthy performance for which, this once, I was really grateful for.  He prescribed meds and we are, once again, trying to drug the crazy out of our child.  If you are sensing a lack of confidence in this strategy, you are sensing correctly.  When your cupboard is overflowing with meds you have tried and failed with, you start to lose confidence...can't imagine why. 

Now, here's the bright light.  Tuesday morning I taught a religion class--we are studying the New Testament in John and one of the stories is the story of the blind man.  In that story, Christ heals a man that was blind since birth and the Pharisees question whether his disability was caused by the sin of him or his parents.  Christ refutes that theory and then goes on to explain the reason: "that the works of God should be made manifest in him."  Here's the beauty of this whole thing.  In the throws of this really crappy stuff, I have to know that there is purpose--that somehow, someway, this is going to help me, help our family, and help Matt.  Maybe it is as simple as the idea that we will appreciate just how much better he is doing because of the really crummy days that we have to compare it to.  Or maybe it is more complicated but equally powerful--something about what we are supposed to learn or a quality that we are supposed to develop.  Like, I don't know.....PATIENCE!  ENDURANCE!  LONG-SUFFERING!  I suck at all of those things, so that would not surprise me.

Even more beautiful than the learnings (because that, to me, comes pretty naturally--I love to learn and am always trying to figure out what I'm supposed to get out of something.  It is my thing.  I love it), in this case, is what it is doing for the greater good--how the works of God are being made manifest.  Let me explain....

One of the quotes I read as I was studying for this class said that adversities will be "consecrated for our gain."  When something is consecrated, it is made sacred. Our adversities can/will become sacred to us and serve the purpose of helping us to gain--improve, grow, learn, etc.  And the second part of the quote said that those same adversities will then "bless the lives of countless others."  That part to me is beautiful--that the difficult things we go through will become sacred to us and then used to bless others.  Kind of makes it feel like it is worth it.  Ironically, this lesson was taught in conjunction with the healing of a blind man.  His sight was physically restored, but the greater miracle happens in the verses that follow--he comes to know who Christ is.  That happens a little more gradually--a little more step-by-painful-step as he endures questioning and is cast out of the synagogue (the source of his social and spiritual life).  But his confidence gradually builds. Then Christ comes back to him and tells him very clearly who He is at which point this man's spiritual eyes are opened.

I think that the point of our adversities (and this is a big one--not Matt himself, but the behavior phase) is because they open our eyes.  We are able to see things in a different way after going through something hard.  We have more compassion for others, tolerance for differences, offer the benefit of the doubt more often.  We can look around us and see suffering that might have otherwise gone unnoticed which gives us the opportunity to offer relief.  I truly believe that our struggles become sacred to us because the open our eyes--they allow us to see things differently and in a way that enables us to be instruments in the hands of God to lift and "bless countless others."  Through that process, we come to know Christ.

Let me get specific here with Matt.  I do believe that through this precious boy, the works of God are being made manifest.  He inspires people to be kind, to overlook shortcomings.  He pulls love out of you by heaping it onto you.  He makes people feel wanted when he walks up to them and, after trying to steal their phone, takes there hand and says "shake!" or something else, indicating that he wants them to come and hang out with him.  He shows joy like no other person I have ever met--its like it bursts out of his body and he dances to express it.  If God embodies love, acceptance, tolerance, patience, kindness, and purity of heart, the works of God are being made manifest through my son.  My responsibility is to take the trials that go along with it and allow my eyes to be opened through it--both in a way that helps me to know Christ and in a way that helps me to "see" others. This is no easy task.  It is tempting to retreat inward when I am struggling--to hibernate or wallow. I'm not great at reaching out when I feel overwhelmed like this.  But I am trying.  I want to have this journey with Matt be a sacred one. I want to be an instrument in the hands of God to bless lives.  Enduring these phases...enduring them part of that journey. In ease, we are not given the gift of growth--it is in the painful day-to-day experiences that tax our energy, strain our mental capacities, and spiritually bring us to our knees that make us who we need to be.  Well.....I'm certainly in the throws of that.  Bring on the growth.

Today, however, I'm less ambitious.  Today I'm just going to work on not being grumpy about all of this.  


  1. I feel inspired by this post, as in "life breathed into me." Thank you for sharing your trials and how they bring you to Christ. As I read this I thought about how it's hard for me to share my trials because it feels vulnerable but for me, sharing my trials and what God wants me to learn from them is part of consecrating them.

  2. Thank you for sharing. Brought tears to my eyes it was so well worded.