On the Brink

I sit at the foot of my son’s bed and watch him breathing in and out with such peaceful rest. Moments ago, things were not so peaceful.

You see, over the last several months there have been self-injurious behaviors, aggressive meltdowns, holes in the walls, broken glass, and broken hearts. These images of terror and helplessness seem so contradictory to the peaceful sleep he is now engaged in.

I see his man-sized feet. How did he grow so big so fast? Feet that were once cheered for when they were finally able to walk with stability and strength, that are now feared as they are used to kick through walls, into chairs, and at the people he loves most.

I see his precious hands; the ones that hold mine when we pray, that he uses to pat my face when he kisses me goodnight and gives the best hugs with. Those hands are now covered with the scars of self-injurious scratches from moments of anger and frustration. Those same loving hands are used to punch, throw, scratch, beat whatever they can in order to communicate the frustration that words cannot.

But those hands and feet belong to my baby, so I keep fighting for him and loving him unconditionally. This means we push him to try harder to overcome and we don’t give up.

As one by one the support services and systems are “unable”, “not equipped”, “not at this time”, and are maybe “not the right fit”.

The world of severe autism is rarely talked about. But here we are. With people throwing around terms like “residential facility”, adjusting medication dosages, buying pull ups again, and praying each day that our delicately balanced world doesn’t come crashing down. We wait for that one phone call. That one moment, when it all falls apart.

It’s an interesting place to live on the brink. To work so hard to build all the stability and love into your family and the life of your baby, but to know that it is so very precariously perched upon the willingness of others to love him as much as you, believe in him as much as you, to believe that he is not just a number, he is not his aggression and to be willing to put the work in to think outside of the box to offer him all the tools necessary for success. And sometimes, call it “the autism”, call it “the system”, call it what you will…but it seems to win. Sometimes, it’s just not safe for them to be home any longer.

So this is where our family finds itself. As I sit here watching my giant baby sleep peacefully, I grieve. I grieve what has been lost, and I pray we do not have to lose anything more.

I don’t think God would ever expect us to not feel broken over the place we find ourselves in. A life with Jesus is not a life apart from grief. However, we do not grieve without hope. We know that one day, all things will be made new. We also know that God never leaves us or forsakes us, so we do not journey through this brokenness alone. I’m thankful I can go to God with my anger, grief, and pleading on my son’s behalf.  I am thankful He does not give up on Ezra either.

So, I sit at the foot of my son’s bed and watch him breathing in and out with such peaceful rest, and I lay all that transpired today at the foot of the cross. Tomorrow is a new day. I can’t do it alone. Good thing I don’t have to, and neither do you.

“The Lord Himself goes before you and will be with you; he will never leave you nor forsake you.” - Deuteronomy 31:8