Our New Lease
Every once in a while, the stars align and, yet again, you get to lease an angel. All the dead ends and speed bumps along the way make it worth it because the road brings you to these people that you feel honored to bring in to your child's life. Therapist, respite, teacher, nurse, doctor, surgeon.
This is their job.
They downplay their role in our life. They try to turn it around to give us the credit. They discount the magnitude of the joy and relief I feel seeing him connect with others outside our family.
They love him and they get him. And they get me, which is also a task. When I see Luke run to any of these people and embrace them, I feel a tightness I didn't even realize that was there, release. He is going to be ok. One day, when I am not here anymore, he is going to be ok.
Knowing they are my safety net. Knowing that they pick up what I miss.... That is the reason I am ok. That is the reason Luke is ok.
Luke started school today. Now, not preschool in a conventional kind of atmosphere. We aren't there yet.
Today he started homebound school. This is a program for medically or emotionally fragile students in public schools to still receive an education, even if they can't come to school with the other kids.
So as the buses full of students pulled away from Mt. Tabor, where I work, I clocked out as a teacher and for the first time, I stood on the sidewalk and became just a mom. We walked into the building and I swelled with pride, hoping to run in to people in the hallway who have been praying for and rooting for Luke for almost four years.
We walked hand-in-hand to the classroom and I watched Luke explore and process his new environment with no fear and so much excitement and wonder. His teacher is someone I have had the privilege of knowing for twenty years and someone I have been working with and in awe of for 10. She, just like so many people who are in Luke's life, reinforces the Special in "Special Needs". They are people you pass in the grocery store and have no idea the lifesaving talents and gifts they possess.
When we first walked in I had convinced myself that it was just like another therapy session, no big deal.
But as we pulled out of the parking lot, it hit me. And yet again, the realization began to leak from my tear ducts.
Luke just went to school. Luke just used crayons. Luke just sat at a table... on tile...without a helmet.
Luke Harrison, the boy who had 15 seizures a day in December just went to school.
To the angels in our life now and the ones we have yet to encounter, remember, your drive to work might as well be in a chariot with trumpets blaring in the background.
I know you don't get paid much, but I know that money is not what fills the account that you value the most.
The work you do matters.
The work you do is noticed and appreciated and valued.
The work you do saves.
Thank you, Angels, for being available for lease...
The new normal
I've decided to trust fall into the normal life. Luke could not be more precious and Sam continues to prove himself as my rock. Just now beginning to feel the fear that goes along with loving two people so much that it hurts...
It is like you are plopped in the middle of a show that everyone has been obsessed with. I have heard so much about it so I should know what is going on. Everyone assumes that I must have been tuning in, but I haven't. I have been rescued by trauma.
I was rescued from soccer and baptisms and preschool.
I was saved from these decisions. I was robbed of them.
When they were discussed by my friends, I scoffed at their petty little lives with their petty little problems. Yet here I am, plopped right back in to life, trying to figure out, for the first time in my four years of parenting, which sippy cup you use to wean off the bottle.
The bar was so low for so long. It was impressive that I brushed my hair and smiled from time to time.
This feeling of being normal is what I yearned for, but as I step in to Normal Suburbia, I have to say, it scares me.
Last year being a good mom just meant doing everything we could to get the seizures to stop. Just don't die.
This month being a good mom involves education, therapy, nutrition, socialization, religion, and discipline.
The fact that I am more tired, more annoyed now is weird.
I keep waiting on something to save me. A project. A calling. A path. A fight. But when I stop and wait for it to fall in to my lap, I am only met with silence.
This void was purposeful, yet all I have tried to do since we returned was to fill it up. But the void is not an opportunity to do more.
The void is supposed to be a void.
The nothingness has meaning.
I thought I was on my knees. I thought I had lifted up the fight and surrendered. But how dumb? How can you surrender and be still when you are still out there hustling?
These moments of silence. This discomfort was meant for me. I lied and said I knew I wasn't driving, but, come on, I had my hands on the wheel. My knuckles were still white.
But I sit here, 8 weeks later, pouting in the drivers seat, running on fumes. I have been down dead ends and backroads. I yearn for the interstate where I feel at home and free. But just like Lightning McQueen, I sit here in Radiator Springs trapped in a bubble of slow paced love with no highway in sight.
I've seen the movie a few hundred times, so I get the goal. I need to stop and smell the roses. I need to just go on a drive. I need to work on relationships. I'm no dumbie. I know how the movie ends. He loses the big race and the Piston Cup yet still wins a soul and a Porche.
So, I buckle down and start paving the road (he has to do that in the movie).
I need to slow down. I need to vacuum. I need to remember I have baseboards. I need to catch up on 3 seasons of Game of Thrones. I need to play with my boys...
When I am with the boys I don't lose this crusty, entitled attitude, but it just takes a backseat. Both the boys are like magic. They're sponges and learning so much everyday. The growth that Luke has made in a few weeks is monumental to us.
He looks at us.
He plays with us.
He cries for us.
He tries to get us to laugh...
He WILL talk. And I don't mean it in a "If you will it, then it will happen" kind of way. I mean it in a "Dude is going to talk for real" kind of way. He's smacking his lips and blowing raspberries and attempting to mimic my sounds when I sing to him. I push my nose against his and with his eyes wide he smiles in anticipation. I take a deep breath and he knows it is coming. Do you want to build a snowman? His smile grows and he waits for more. Or ride our bikes around the hall? I wait... BLLLUUUAAHHH he sings back. Our first duet.
It is not that I want him to talk so badly that I am saying he is going to talk. I am saying, the train has left the station. It is in motion.
The clarity in his eyes. The sound of his voice. The feel of his fingers wrapping around my hand to take me with him on his adventure. These moments are not unappreciated. They bring me to tears of joy.
When Sam kisses his brother goodnight and tucks him in. When they sit on the bed and watch a movie on the iPad. When they play peek-a-boo. These moments are not missed.
I try to soak it in. Maybe I am just not really absorbing it like I should. Maybe I am trying to multitask too much and this "all-i-need-are-my-kids" feeling is blowing right past me.
So I stop and try to remember how to chill.
I sit and play instead of putting away laundry.
We eat dinner together instead of unloading the dishwasher.
I lie on the floor and do 'airplane' instead of writing.
I am still, yet the chaos of the unknown new path swirls around inside of me.
If I were cool, I would try yoga or meditation to calm my brain and find some peace, but instead I find myself working on my issues through aggressive conversation in the car alone. As I drive to work, I chug my coffee and yell, "What am I supposed to be doing with my life?" I have decided that prayer is good no matter what. So yelling is better than years of the silent treatment.
If you pass me on Grant Line Road around 7:20 and you can't figure our whether I am in an argument or singing Alannis Morrisette either one could be true.
So when I realized that a racecar was the character/ person/ automobile that I most associated with, you can see why I have been less than inspired to share this discovery. I keep trying to make the turn on dirt and my wheels just keep spinning out.
My over zealous nature has left me in a cactus or two over the years, spun off the road from leaning too hard in. How many thorns must we pull out of our rear before we realize that its 2017 and cars can basically drive themselves.
"When you go hard enough left, you find yourself turning right". So like a New Age Budda, Lightning McQueen is finally the one who teaches me that the only way to get moving in the right direction is to stop moving all together.
Mother of two amazing little boys, one who just happens to be a TS warrior.