Thursday, May 25, 2017

More Struggle, More Tears, More Joy

Last day of Fifth Grade
Pulling away from the school after dropping Jackson off this morning, I cried. My older son (who I drop off second) asked why I was crying, then why I didn't cry like that when he finished 5th grade. Little stinker. First off, I did cry when I dropped him off, too. I cried like a baby, only there wasn't anyone left in the car to hear me and ask me about why I was crying. I will admit, though, it wasn't the same, and I don't think it will be the same when my younger child finishes 5th grade either. Why? The struggle.

Jackson started off his life in better shape than his brother and sister. My oldest was born with a low birth weight 6 weeks early. He struggled to catch up with his peers, but once he did, he took the lead and kept it. My daughter barely made it to full term, and had a rocky first few days, but she also caught up fast and hasn't slowed down since. Jackson was a big healthy baby born full term and sent home from the hospital within the first 24 hours. Physically, he thrived the first few weeks of his life, but that's where the differences flip. While his brother and sister caught up and passed their peers in almost every way, Jackson started falling behind. The struggle began.

The differences and delays started adding up. He wasn't reaching milestones. He wasn't talking. He wasn't walking. He hated being touched and held. You can read about the signs we saw and how we decided to seek and eventually received an autism diagnosis in another blog post of mine, but it was all different with him.

His food allergies and his autism often made school days a struggle. Allergic to corn, soy, milk and eggs, he could only eat my food, made from scratch. Most of his life, if I or a trusted family member or friend didn't make it, he didn't eat it. He had food texture and temperature issues on top of the allergies, so there were limits. I spent many late nights up cooking making sure he had safe healthy food he would enjoy eating.

He struggled socially, and his social issues got him in trouble often. He had trouble with focus and attention, personal space and boundaries. He didn't make those intuitive leaps the same way his peers did. Each situation was its own entity and did not carry over into other situations with other people.

He had multiple weekly therapies both in school and private. He had communication issues, processing issues, social issues. His teachers' and therapists' suggestions and observations shaped much of what we did at home. I think I came to rely on them as much as he did, and when he graduated out, I felt lost, like I had lost my own therapy in the process.

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Kindergarten Graduation, 2011
For Moms with kids like this, there is no choice between fight or flight because flight isn't an option. So, you fight and you fight and you fight. Your whole identity gets wrapped up in this battle. It consumes you.

I fought hard to make his world safe. I fought to learn to cook things he could eat and enjoy. I fought for his education, to get him in the schools that were best for him. I fought for insurance coverage and Medicaid acceptance so he could get the therapies he needed. I fought to teach him how to learn, how to calm the storm of sensory information and filter out what he needed. I fought to teach him how to be a friend. I fought for the right medication, the right doctors.

I have fought battles for each of my children, but my other two didn't need me in the same way Jackson did. Jackson needed me, not so much to fight FOR him but WITH him, along side him. It's so easy to get caught up in the mom fight with Medicaid and doctors and teachers and therapists and administrators making sure he gets everything he needs, I forget that he's fighting just to be himself in this crazy world that isn't usually kind to those who are different.

Every step he has taken in this life, I feel like I took with him. The first step into school, we took together, and today we took the last step out of elementary school together. I hugged him outside and lost it. All the hard days. All the late nights. All the worry filled days. All the tear filled days. All the days filled with frustration. All the days I was sure I had failed him. All worth it! The memories and the lessons and the relationships we have made together on this journey are worth the struggle. Watching him work so hard, fight so well, overcome so many obstacles and become who he was meant to be, it was all worth the fight.

His struggle continues. It isn't really all that different than the struggle my other two face. Growing up isn't easy for any child, even though as a mother, I feel like it should be the easiest thing a child does. Jackson will face the same world his brother and sister face, but his differences will most likely stand out a little more than theirs. That makes him a bigger target for the ugly in this world to find.

This is where my struggle changes. I will no longer be fighting by his side in a measurable tangible way, at least not as much. My fight will be spent mostly on my knees asking the God who made him to sustain him through the next stage in his life. My fight will be fought behind the scenes encouraging him to trust the God who does not make mistakes. I'll be making sure he knows I want so much more than "normal" for him, and that his differences are what make him one of the (three) coolest kids on the planet.

My tears today didn't just come from a milestone reached. They came from a hard fought battle won. He made it! We made it! And, I could not be more proud of this child.

To God be the glory, without his choosing to give Jackson to me, I would not have known the depth of his blessing, his sustenance, and his joy, nor the size of the fight in this mother's heart.

Onward to middle school! But, first, Summer.

1 comment:

  1. We fight because there is no other option...this is so very true!
    So very well written and you captured so much of our journey as well. I have been on my knees often and need to be more.
    He is a wonderful young man with an amazing mother who I'm blessed to call friend!
    Today I celebrate him and his victory, your victory and I know he will be great in Middle school!
    Much love��