Pier at sunset

‘Tis the Season

It May. Mayhem, if you ask me. So many school events, class parties, teacher appreciation events, baseball games, graduations. You name it; it’s happening. And all within a five day span it feels like. Next week, my youngest son graduates from Pre-K. Tonight, my middle son completed his second year of Royal Ambassadors (a Wednesday night missions program at our church). In a couple of weeks, Hayden’s former 5th grade public school classmates will be celebrating their final walk through their elementary school halls. Obviously, as a homeschooler now, Hayden won’t be participating in those activities with his 5th grade class. He didn’t participate tonight in the RA banquet at church. He doesn’t fit any certain mold. When Hayden entered the world, in fact, the mold was crushed and obliterated. He is his own person. And we are grateful. But also, we are sad.

It’s hard to sit and watch Hayden’s peers move on in life. We always knew, theoretically, that this would become our reality. And ever so slowly, it has unfolded. This season of the year is just a time when it is on the forefront, rapidly playing out before us. Even if Hayden had remained in public school, he would not find joy in the celebration taking place for his peers. If Hayden had continued in RAs at church this year, he couldn’t have endured the banquet and all of the clapping – in fact, he stayed in the lobby with his attendant and cried because he could hear the applause through the wall and it was upsetting to him.

Oftentimes, I feel like I’m a mom with two families. I have a family of a husband and two healthy [albeit, wild] boys. We go to baseball games and cheer on our boys, we drop off our boys to their Sunday school class and leave them, free as a bird, we even sometimes go on vacations just the four of us and have a carefree, restful time. I also have a family of a husband and a special needs son. We go to doctor appointments and Operating Rooms and we cheer on our boy, we drop our boy off to his attendant at Sunday school and then keep our phones close by just in case the oxygen tank needs to be exchanged or his trach comes out, we sometimes go on trips to hotels with our boy so that he can work behind the front desk and make hotel key cards to add to his obsessive collection. Yet everyday, simultaneously, I am both moms.

The sting of watching my life as a mom not look the way I had always pictured it, doesn’t ever go away. Some days are easier than others and the grief is so faint and so small in my heart that I nearly forget it’s there. And other days, it’s so big and painful I’m not sure how I will get through it. And that is ok. Grief is a part of this journey. I’m in good company with my grief. In fact, Jesus Himself was a “man of sorrows and acquainted with grief.”  (Isaiah 53:3)

I’ve been working with my counselor over the last couple of years and I know myself better, I know how to handle stress and grief better. But mostly, I know my God better. This past decade of living life as “Hayden’s mom” has opened my eyes to so many incredible, priceless lessons. I’ve seen God’s hand work in unbelievable ways. I’ve been gifted this opportunity to walk alongside and just watch His amazing plan play out. However, most recently, over the last two years, my heart has been attuned to not just God’s plans, but God Himself. To really understand the love He has for me, to believe just how loved I am, and to accept how He sees me has been the highlight of my life’s journey. I heard a quote from Bob Goff once that said, “Jesus is nuts about you! Your picture is in His wallet.” What a great illustration! The creator of the entire universe is really, really crazy about you.

See, when Jesus came to this earth to walk as a man, He experienced the same things we do. Grief, betrayal, sadness, exhaustion, hunger, thirst. And He overcame it all through His death and resurrection. And now, I have complete hope in Jesus. I know exactly what my future will look like. I know what restoration will come. And I know what true love feels like. And when you’re loved like crazy by your Creator, you are free indeed; free from the bondage of grief.

“So if the Son sets you free, you will be free indeed.” John 8:36

13 Comments

  1. Linda Matthews on May 10, 2018 at 3:25 pm

    Wow and thank you for sharing love your family

  2. Jennifer Pressley on May 11, 2018 at 1:05 am

    This is beautifully written Johnna. Thanks for sharing your heart!

  3. Jennifer Pressley on May 11, 2018 at 1:05 am

    This is beautifully written Johnna. Thanks for sharing your heart!

  4. Leah Lively on May 14, 2018 at 2:30 pm

    I love how God chooses to show us glimpses of Him, so often through our special needs children. Thank you for your raw honesty.

  5. Leah Lively on May 14, 2018 at 2:30 pm

    I love how God chooses to show us glimpses of Him, so often through our special needs children. Thank you for your raw honesty.

  6. Alicia Costello on May 14, 2018 at 7:37 pm

    I love when you talked about being bot just tuned to God’s plan but God himself. We can be so obsessed with getting answers to our questions we can reduce God to that answer. But God wants a full-fledged relationship, not just information.

  7. Alicia Costello on May 14, 2018 at 7:37 pm

    I love when you talked about being bot just tuned to God’s plan but God himself. We can be so obsessed with getting answers to our questions we can reduce God to that answer. But God wants a full-fledged relationship, not just information.

  8. Melissa Schlies on May 15, 2018 at 12:00 am

    Thank you for sharing your story. As a kid-now-adult who grew up in a family like yours–there were my parents, my two younger sisters, and I, and then my parents and my older sister who was in and out of the hospital–I know the fracture from a sibling perspective. I can’t imagine it from a mom’s perspective. Thank you for being real, and letting other families know they aren’t alone.

  9. Melissa Schlies on May 15, 2018 at 12:00 am

    Thank you for sharing your story. As a kid-now-adult who grew up in a family like yours–there were my parents, my two younger sisters, and I, and then my parents and my older sister who was in and out of the hospital–I know the fracture from a sibling perspective. I can’t imagine it from a mom’s perspective. Thank you for being real, and letting other families know they aren’t alone.

  10. Heather Bock on May 22, 2018 at 4:33 am

    This is so beautifully honest and well-described. I love your response to the huge difficulty of it all. Your response glorifies God in such a big way!

  11. Heather Bock on May 22, 2018 at 4:33 am

    This is so beautifully honest and well-described. I love your response to the huge difficulty of it all. Your response glorifies God in such a big way!

  12. Ashley Kubik on May 22, 2018 at 7:16 pm

    Thank you for sharing your family! What love the Father has for us all!

  13. Ashley Kubik on May 22, 2018 at 7:16 pm

    Thank you for sharing your family! What love the Father has for us all!

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