When Every Day is Hard

I am a special needs mom, though his special need is not something physical or easy to see. Instead my Sweet Boy-Child seems typical. His special need is in his mind.

Special Needs Journey

Sweet Boy-Child has developmental delays and speech delays. Though not the definition of special need, they do make life harder. They do impact him, our family, and his everyday life. Along with these delays, Boy-Child battles severe anxiety. I know many people suffer with anxiety, but Boy-Child’s makes everyday, typical life difficult. His anxiety is severe. Coupled with his delays, some days and some situations can seem impossible. Interwoven into his anxiety are sensory processing issues as well. At this point, it is difficult to unravel whether these sensory issues are due to his brain’s inherent make up, or because of his severe anxiety. Sweet Boy-Child battles oh so many things that make his everyday life hard: severe anxiety + sensory processing, developmental delays, and speech delays. Each layer adds to the prior one, leaving us in a confusing jumble.

Each day is met with different struggles, different situations that may trigger a landslide of events. Some days the triggers are small but have great, far reaching effects (like an ant outside) and other days the triggers are big with more minimal effects (like Baby Boy shouting or touching). No matter what transpires, the day is hard. Be it for only a moment or something bigger that reaches deep into my heart. The day is hard.

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Do the Hard Work

WHERE I WAS

This is our last week of school and the week before we leave for vacation…so naturally my to-do list is gigantic. I was excited to actually shower this morning and thought the day was off to an amazing start. I envisioned excess time, smiles as we worked, and even the wildlife helping out. You know. Cinderella style.

Work Hard

Seriously, I was delirious.

Instead, I got nothing accomplished and had to put myself in a time-out. As I sat thinking about my heart, I was feeling terrible. I had been scolding my daughter. The one that wants to help me clean and prep for our trip. Why?  Because she wouldn’t stop talking so I could think. I get it. I’m the same way. But now the tables had turned and I was annoyed.

Instead, I sat. Accomplished nothing. Too overwhelmed to move forward.

TODAY

Today, it’s crunch time. Seriously. I have a lot of work to do. And instead of feeling overwhelmed, I feel motivated. Excited to begin. I can see the future, what is coming, what I am preparing for. And it looks wonderful!

Do you have those days, too? The days that seem like there is too much work. Too much mess. And you can’t see the glory in it. The wonder. The beauty that will come from it.

If you do (because you are a human!), I want to encourage you. Press on, dear friend. Keep moving forward. Seek where God is moving and follow. Walk on. Do the hard work. Sow the seeds. And then be prepared to rejoice.

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Hope in the Journey

Hope.

Such a simple, small word. Just four letters. Yet filled with so much meaning. So much longing. So much promise.

Today, I am sharing with you my journey to hope. A journey I am on with my husband and Sweet Boy-Child. This is a journey we have been on for a little while, for most of Boy-Child’s life. Though, perhaps this journey is not as long as it feels. It is a journey I have shared bits with you before, throughout my posts, but specifically in The Journey and Rejoice.

Our Special Needs Journey

Photography by: Robbie Bergman

THE BEGINNING 

My boy-child came into this world as the third child in our growing family. He was a busy baby in the womb but proved to be a relaxed and easy going third. He loved cuddling and was happy to be strapped to me in a carrier as we adventured. At an early age, he was an observer. He watched his older siblings (almost 2 and almost 4) and marveled at their crazy antics. He did not copy them, just watched. Always interested. Always curious. But always a bystander. Yet always, always with a smile.

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Rejoice

Today has been a hard day. A long day. And still somewhere in there, a beautiful day.

We had my sweet boy-child’s third appointment. It was a hard appointment. He didn’t want to do the testing anymore. He didn’t want the rewards. He just wanted to go home.

At the end of the appointment, the neuropsychologist did some free play with Sweet Boy-Child. It was sweet and he loved it. The hard part came when I was asked how often we free play. With 4 littles and especially, Baby Boy, around, it’s almost impossible to play without being interrupted or the play destroyed. All ending with Boy-Child screaming.

I Am Not Enough

Realizing, or rather, remembering my human-ness was hard. Is hard. I cannot and never will be able to be everything for my children, my family. While that is usually okay, today it was hard. Did my human-ness somehow fail my son? I know it didn’t, deep down, I do. I know he is beautifully and wonderfully made. But in the stillness, in the quiet corners of my mind, my heart, I wonder. I cry.

I am thankful that in those moments, I have a community of women that lift me up. That pray for me. That talk with me. That remind me, that I am Sweet Boy-Child’s mom. I was CHOSEN. They remind me that I am a good mom. But most importantly, they pick me up and point me back to the One who is enough.

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The Journey

I had today’s post all figured out. My husband and I surprised my 2 eldest children with a Winter Weekend Road Trip! There is something about the freedom of a road trip that just speaks to my heart. My soul sang; my heart ran free with arms wide open as I drove my family up north. It was what we were designed to do, to be. FREE, full of JOY. No wonder my heart and soul longed for it so! And rejoiced when I found it – I was FREE!

But then today, I re-entered life. And my soul got bogged down. My heart grew heavy. And I realize, now, that I cannot write about the freedom in the open road. Not right now. It wouldn’t be honest. Or real. It would be planned.

Instead, I am going to share a piece of my heart. A glimpse into my journey with my sweet boy-child. This journey is difficult and beautiful all at once and I pray that it finds you, that it speaks to you, and that you find encouragement from it.

MY SWEET BOY-CHILD

Today I had an appointment for my sweet boy-child. His role in our family is: child 3, lego-lover, sister’s friend, cuddle-giver, and screamer. He is a sign of GRACE to me each and every day. His beautiful smile can make anyone’s heart melt, and it frequently does mine. He also is a special needs child. At the age of 2, he was diagnosed with Developmental Delay. (Early intervention began our assistance for Sweet Boy-Child. The growth he had in the year of EI, was amazing. Please, if you live in Illinois, please take a few minutes to write to your state representative to save Early Intervention!)

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