Monday, July 9, 2012

He Can Do Hard Things

I have to admit that I am astounded at all the things that Brother has been able to do lately.

Not anything most people might be astounded over, but, to me, nonetheless, astounding.

All the things that I was told he wouldn't be able to do when we first got his diagnosis devastated me.

All my hopes and dreams for our son were dashed into pieces when we were told he was mentally impaired because of Fragile X Syndrome.

He has surprised us with each hill he has climbed and every wall he has broken through.

I remember when he wanted to ride his bike with the other neighborhood kids. He was the only 7-year-old with training wheels but, he didn't even seem to notice or care, he was just happy to have people riding along side him. Now I watch him ride off with his dad on his beach cruiser bike all the way up the canyon trail to the water fall. It wasn't until last year that I had learned that many children with Fragile X aren't able to ride 2-wheeled bikes because of inner ear issues causing balance struggle and low muscle tone affecting their ability to pedal long distances. So doing what he does on his bike is astounding.

He gets overwhelmed by outside stimuli so much so that he falls apart at the seams. Miraculously he has, over time, realized that he can remove himself from the overstimulating situation by singing, covering his ears for a bit, taking some alone time or even just covering his head with his blanket or jacket. He has learned to help himself.


I watch him struggle with the anxiety inside his mind when he really wants to do something.

It breaks my heart to see his desire to accomplish something or to participate in something but his anxiety takes hold of him and he denies himself the activity.

It breaks my heart to see his anxiety peak when we, as his parents, help him fight through the anxiety to get to the point of participating in the activity he really wants to do but, his anxiety fights him on.

Sometimes it becomes a physical tribulation as I carry his fighting body to accomplish a task yet knowing that his spirit is so willing.

It becomes so physically, emotionally and spiritually draining to be his parent.

Just the decision to send him to Scout Camp for a week brought on emotional turmoil for Marc and I as we tried to decide if we could trust others with the care of our son. And would Brother be able to work through his fears and anxiety without us. Would the leaders remember his meds and give them appropriately? Would they know when he needs to be pushed and when he just needs some time. Would they understand his need for love and attention without eye contact or receptive attention?

We made a last minute decision to let Brother go to Scout Camp this week.

We feel that it is a great privilege for people to learn from Brother.

We also feel that it is a privilege for Brother to learn from all the boys his age. Twelve of them, including himself, will be with their leaders for 5 nights.

Brother learns from example, so I pray they are great examples.

His sweet friend, M, ate dinner with our family yesterday and she was informing him that she was also going this week to girls' camp and asked what he was doing this week and he informed her, "Scout Camp." She then asked if he was excited and he said, "Oh yes!"

Then when we informed our neighbors his friends, Ali, Nee and Pepe came to tell him "goodbye" and "good luck." Even though he ran from them at first he was able to come back out with his blanket over his head to talk to them and let them know that he was excited.

Their mom, Amanda, sent me a text later that evening to let me know that Ali had included Brother in their family prayer.

I haven't cried, yet, about him leaving for a week.

I might.

But, right now I am just so incredibly proud that this morning at 6am he rose with a smile on his face so excited for Scout Camp with his friends. Marc dropped him off with his backpack bigger than him, his bag of apples, granola bars, lemonade and sweet tarts and said he was happy as could be about hanging out with his friends for a week.

Now we'll see if all goes well.

Oh, did I mention that the Scout Camp is 4 1/2 hours drive from our house?

Ya, he can do hard things.

So can I.

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