When I Mourn the Mundane: Grief, Loss and Special Needs Motherhood

When I Mourn The Mundane: Grief, Loss and Special Needs Motherhood

I saw them as I drove out of the Target parking lot. Two little boys, rolling down a grassy hill, squealing in delight as their momma waited at the bus stop nearby.

Such a simple little scene…

But I felt like I couldn’t breathe, watching the oldest boy roll with abandon and wild joy. Tears immediately began to flow, and I actually had to pull over the car for a moment, just to get myself together.

When I Mourn The Mundane: Grief, Loss and Special Needs Motherhood

 

When I was a little girl, my grandma used to take us to our little, small town zoo. We would eat pink popcorn bricks and drink too much coke. My sister and I would make up stories about the all the animals, and how we would rescue them and take them to Africa one day. I remember the smell, the paths, the exact lay-out of that zoo.

And the one thing I remember more clearly than any other memory?

At the end of the day, when we were tired, smelly and sticky, my grandma would take us to this big hill, right outside the zoo entrance. She would smile and then let us roll down that hill for as long as we liked. We would run to the top, as fast as we could, lie down in the prickly grass, some of it sticking to the leftover sugar on our faces and hands, and we would roll and roll and roll. When we got to the bottom, we would laugh and race each other run back up to the top to do it all over again.

It is one of my favorite childhood memories.

When I Mourn The Mundane: Grief, Loss and Special Needs Motherhood

When I Mourn the Mundane

My son has never rolled down a hill. Not one time in twelve years. He probably never will.

It shouldn’t matter. He doesn’t want to roll down a grassy hill. He hates touching grass. It is painful to him – of course he wouldn’t choose to put his whole body on it and roll. It wouldn’t be remotely fun for him.

So it doesn’t matter to my boy – not at all.

I am grateful he doesn’t feel bad or left out or different or less. He just logically looks at something like rolling down a hill and says, “No thank you.”

But when I saw those little boys, playing on that hill by the bus stop, I felt an ache so deep, it literally knocked the wind out of me. The loss of something so small and so simple, somehow felt worse to me in that moment than all the other trials, all the struggles, and all the painful reminders of how different our life can be.

This is about me. This is about my expectations of how it was going to be, how it was supposed to be. This is about my momma’s heart being reminded once again of the loss of the mundane – rolling down hills and playing in the mud and eating sticky cotton candy and going barefoot on the beach and running until you are so sweaty you can’t catch your breath, and riding on all the roller coasters no matter how loud they are – these are parts of life that my son cannot enjoy.

Grief. Loss.

It breaks my heart.

When I Mourn The Mundane: Grief, Loss and Special Needs Motherhood

Grief, Loss and Special Needs Motherhood

I finally got myself together and started to drive once again. As I turned the corner, in my rear view mirror I saw that momma and her little boys. I prayed that she might take a moment to just enjoy them, all sweaty and smelling of grass.

Then, I thought of my son at home, probably reading an adult level, technical book about reef aquariums. I had to smile. The ache subsided and my prayer turned instead to this –

Father,

Thank you for making my son, exactly as he is. Thank you for the story you whisper to me everyday through him. Thank you that he is smart, and funny, and so affectionate. Thank you that he can talk, that he can walk, that he can read and think deep thoughts. Thank you that he is here with us, teaching all of us more about You.

Thank you for reminding me that rolling down a hill, although sweet, is nothing compared to the joy and love and understanding and grace you bring to my life every single day without fail, not in spite of my son’s uniqueness, but because of it.

Thank you for the conviction that even if I could,  I would never change a thing about him.

 

I brought the groceries in, and my sweet son put down his book and ran over to me. He said, “Momma, Momma, Momma,” over and over again, jumping up and down, thrilled that I was home and excited to share all the things he had learned while I was gone.

I hugged him, and lingered for a moment. I kissed his forehead and told him I was glad to be home.

He took my hand and walked me over to the couch. We snuggled up and he started to tell me all about his new book. It occurred to me after about ten minutes of coral reefs and salinity levels, that this is his hill.

How blessed I am that he delights in rolling down it with me.

This post originally appeared here on Not The Former Things in January of 2015.

 

Looking for More Autism and Special Needs Resources?

What No One Tells You When Your Child Has Autism

Denial, Hope and Parenting A Child With Special Needs

When Waiting Is The Only Option

 

34 thoughts on “When I Mourn the Mundane: Grief, Loss and Special Needs Motherhood

  1. Wow. This one hit me right between the eyes. Powerful, powerful stuff, and a huge lesson to me, even though I have “normal” kids (and of course I know there’s no such thing). Thank you so much.

  2. I was literally having one of those moments of mourning the mundane when your email with this post came. Your words told my story that was all jumbled up in my head so thank you.
    Thank you so much for sharing.

  3. I got chills at “this is his hill.” I loved reading this. This post reminds me of the quote, “We must be willing to let go of the life we planned so as to live the life that’s waiting for us,” by Joseph Campbell.

  4. Oh, I SO SO SO get this! I think having differently-abled children is a constant mourning of our very normal expectations and an acceptance of the different life we have. Yesterday Ethan and I had to leave the worship part of church and sit in the youth group room. My often not-very-emotional child broke down crying and I dragged it out of him that “I wish I had a neighbor” and “I wish Sunday School started right away instead of worship” and “I wish I could participate in Sunday School” and “I wish I could go to youth group”. SO HARD! It seems like he WANTS to have friends, but he has no clue how to go about doing it. He was able to raise his hand in SS and answer a question, so that helped. And we ordered him noise-canceling headphones to try and help with worship. I grieve for what I thought life would be like, too.

  5. And the thing is, I get frustrated with myself because I still have those feelings of grief at times of what I thought life would be like and my son is 13–I feel like ‘c’mon, deal with it.’ I struggle with acceptance. I just printed out that Joseph Campbell quote that Rachael shared above.

    Again, I thank you for sharing your story & being so honest and open. Your words really mean a lot to me.

    1. I am not sure if we will ever get over this feeling. I think, as time passes, I just feel it less often…
      Thank you for your kind words and encouragement. You bless me with them!
      Love,
      Shawna

    1. Thank you so much, Elizabeth. I am always caught off guard by the little things that pierce more than any bad news at the doctors’ offices. I appreciate the reminder that I am not alone!
      Love,
      Shawna

  6. I wrote about this myself….just few weeks ago. I love your insight and I actually had a similar lightbulb moment from God today. As I was walking around in Target I saw this wooden sign that read, “You are my greatest adventure.” I think it is a quote from an animated film. Anyway…it shook me. My guy is my adventure. God gave me this child and no matter what his “hill” may be I should soak it up and enjoy. Thank you for these beautiful words. I appreciate your faith and insight so much.

    1. Oh my goodness – I saw that at Target too! I almost bought it because it reminded me so much of my boys. 🙂
      Thank you for sharing your experience with all of us!
      Love,
      Shawna

  7. As an adult with ASD & SPD I often feel this way about myself – depressed with all I can’t do or things that cause me pain & prevent me from participating in life events, but then I am able to be grateful for all that makes me unique. I think this is fairly common and human. I also felt this way when I unknowingly adopted a special needs dog – I had all these visions of taking him to the dog park, going on hikes, puppy play dates, doing “normal” dog things, but then we found out he has all these health issues that prevent him from going outside or being around other dogs. We adapted and have a fun & lovable dog despite his disabilities. Thank you for sharing!

    1. Thank you so much for sharing your perspective. Although my son is only 12, I am certain that there are times he is sad about the “can’ts” in his life, as you describe. I think you are right – we ALL do this, with or without a diagnosis. We can choose to focus on what is wrong, or on what is right. Thank you so much for the reminder.
      Love,
      Shawna

  8. So thankful to have found your blog, because I truly believe God wanted me to read this post. While my situation is very different from yours, this post hit me hard. I have five children, my oldest being quite a bit older than the others. Parenting my oldest was never easy, because her heart was never ours. She was drawn to the world at a young age, and as her parents, we were never enough for her. Three years ago, she walked out on the family, and we’ve walked thru one devastating trial after another with her since then. She was diagnosed with bipolar disorder as well as schizophrenia, and is in and out of the hospital regularly. All that to say, I am having a hard time accepting the reality that I may never have the sweet, honest relationship that I long for with my girl, and I don’t know how to grieve that, much less accept it.
    Sorry for making this so long….

  9. I am so glad you linked up this post to Sally’s linkup today. Even though I have tears streaming down my face, as this could be me on any given day… I am thankful I got to read them. Such a good reminder of the blessings we have wrapped up un their special little packages.

    1. You are wonderful, Shelly. Thank you so much for your kind words, here and on the page. I am looking forward to reading more from you as well!
      Love,
      Shawna

  10. Yes, yes, yes. And it’s always the simple stuff that gets to me. But it’s all me, because he has his happy places and loves to share them with us. It’s just not like what we thought it would be and it hurts sometimes.

    1. It is always the seemingly small things that affect my heart like this. I am glad to see I am not alone! Thank you so much for your beautiful words.
      Love,
      Shawna

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