Earlier this year we had family genetic testing when Maxs test showed two genetic disorders. Leo too has Autosomal Genetic Nocturnal Frontal Lobe Epilepsy. Today was our official first appointment for him with our Neurologist. We talked about Leo, growth and behaviors, school and his smarts, and his struggles. I’ve gotten more used to talking about the boys struggles but it is still very hard.
She tested his motor skills and his eye tracking, his balance and mimic ability. And he struggled as he always has, with motor skill things. But something I didn’t realize was how off his eye tracking is. She called it Oculomotor apraxia, the delay or absence of voluntary eye movement. It is a neurological deficit, as are his issues with motor control. He, at 6 cannot hop on one foot, touch his thumb to each finger on either hand. He struggles with writing and running, he’s clumsy and isn’t very aware of his body.
I knew that this was all part of Autism for Leo, and Autism is a condition that falls in a subcategory under a larger neurological problem.. and that problem includes his motor control. I was told today that we can continue therapies to strengthen what he has but this lack of control is going to be forever for him, and I felt that all too familiar gut punch.
The boys have the ability to tackle just about anything that they encounter but the hurdles and hurt they have to roll through first hurts me. It makes my mommy future planning punch the breaks and remind me that the only thing I can plan for their future is being with us. I have to plan my future in that manner. If/when they are able to leave they can, but the reality with seizures and autism that they might not be able to tackle this big world without Joel and I guiding them.
I pray every night for a little reprieve for the boys. For them to have a few moments of “normal”, to not be worried about being made fun of, that they won’t stutter when they get overwhelmed, that they will just get to be kids. Kids that don’t need headphones with loud music, or to dig their fingers into an arm when they aren’t sure of their peers. Kids that can hold conversations with their peers, not at them.
And we celebrate the things that are a little easier today than yesterday and we celebrate things most families don’t have to think twice about. And I get jealous. I wanted those kids, the neurotypical ones that play baseball and do karate and can handle birthday parties of friends. And while we are making forward movement with it we aren’t there. And we might never be. And every party we can’t make, and every time Leo is worried about being made fun of and every time Max loses his shit because he can’t get his words out, I hurt a little more.
But I keep pushing forward. Because that is what we do, we put on our braves faces and smiles and tell them that they are amazing, and that no one will make fun of them when they want to tell them the lifecycle of a fruit bat, how they need to ask God for help (7 million times over) or when they need their noise canceling headphones and Mommys friend to hang onto when all the other kids are singing and dancing. Reassurance, it is the best thing I can give my children.
And my kids are amazing. The love they have for others I don’t see in adults 4 times their age. Their acceptance of others, their determination to do life like the other kids, they are amazing. And they were gifted to me. What a beautiful gift. A gift of unconditional love and patience and learning and loving when it hurts and celebrating when it’s small. They have opened my heart to the world more than I could have ever thought.
Even with another challenge ahead of us and more seizures to monitor I will be thankful tonight for this life, these boys and getting to learn along side them.
“Love bears all things, believes all things, hopes all things, endures all things”- 1Corinthians 13:7