Motor skills and seizures and Autism oh my!

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

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Giving, stuff, comfort…..

Giving is something that seems so foreign as of late. We live in a culture where most people are looking out for what they are going to get from a job, another person, the government, etc. It is a pretty powerful evil that people completely over look. If it doesn’t benefit me, my family or my  situation- why would I engage.

Because life isn’t about being comfortable.

WOAH. yeah, I’m sure that was a punch in the gut to some. But guess what- being comfortable in all situations isn’t what this life is about, or rather it isn’t for me. (And I’d hope it isn’t for you too.)

We are all so spoiled with cars, and phones and houses and air conditioning (or swamp coolers) and grocery stores. We have any and everything we could ever need at our fingertips, and we think that anyone that doesn’t use, isn’t privileged to or can’t afford to be “comfortable” is lesser. That they don’t work hard, that they aren’t trying. Guess what, those with less tend to give more- of their time, treasures and love.

We talk about it in my Bible study, the things. Americans especially, are so attached to their stuff. But that is all it is. Just stuff. It doesn’t love you, it won’t smile at you when you need it, ask you to pray when things are good or hard, it won’t tell you that it is happy you are alive. The stuff won’t visit you in the hospital if you fall ill, it won’t hold your hand. The stuff.

When you add the “whats in it for me” with the stuff and the expectation of comfort, you get a lot of empty people that seem to turn a blind eye to people and things that should matter. That person in need of clothes, maybe they came here from another country to make a life for themselves and found out that their education means nothing here. Maybe they were too far along in age to earn another degree, maybe they were promised help that never came. Maybe. Maybe they are in need, maybe they are going to drive you nuts with their needs but what they are asking for isn’t out of line, just going to take some time to fill.

That person that might be homeless, might not be- if you talk to that person, you might find out that they haven’t ever been able to take care of themselves and when their caregiver- their mother- passed away 7 years ago they have been lost, and a pair of socks, a listening ear and a prayer mean so much.

Giving doesn’t have to be a huge ordeal, and so many think if it isn’t a big gesture it doesn’t matter, WRONG. The minute you decide to step outside of your comfort zone and give to another, a smile, an open door, a handshake, a hug, it has become a big gesture. So get out of your head, your comfort zone and be kind, extend a smile, help. Put the judgement aside, get rid of the stuff, bring it back to what matters- Love.

Love is it.