Acceptance vs. Hope

May 28, 2015

I am not sending this for pity or to feel sad but more so to draw awareness of feelings and thoughts Brad and I are experiencing every single day.  Last Friday was a rough day going to what should have been a simple doctor’s appointment but yesterday made up for such a rough day Friday because of CR’s unconditional love he gives Brad, Cameron and I.  We constantly find ourselves always looking for the positive from the progress we see with CR and we remind ourselves every moment of the day, “small steps, small steps.”   And the times we get down, we quickly help each other back up remembering the progress from one time frame compared to another time frame.

This Mom, shares the reality of what really does happen on a daily basis for us when we go to the parks, doctors, therapy, music class, grocery, baseball games, our friends, Home Depot and soon it will be gym class, etc.  We question each other all the time…. What is he laughing at? I wish I knew what he needed? Do you think he has a tummy ache? Do you think his teeth are hurting him?  Do you think that means he needs something?

We never want to lose sight of hope but it plays a tricky balance with acceptance too.  Some days we have complete acceptance and could care less of his severe delays but other times we struggle with acceptance because we don’t ever want to lose sight of hope that he will speak one day and conquer these delays.  So ACCEPTANCE and HOPE tend to play against each other but we quickly look at the ways they can play together and remind ourselves of these times. It’s quite exhausting actually but with the great support for each other and our wonderful friends and family such as you, we are able to do this.

Thanks again for letting me vent and put my thoughts on paper today. Much needed.  Hugs, Shelley

 

HeIMG_0436ather is an autism mom, writer and coffee devotee. Her poems have been published in literary journals such as Illuminations, Birmingham Arts Journal, Ruminate, and others. She blogs about autism, God and other things at www.frayedflowers.com .

I just wanted to sit beside you, green-sleeved lattes in hand, and talk. I know talking to me is no substitute for the conversation you long to have; I know you’ve gone years upon years waiting for a voice. I know you’d gladly give up coffee for the rest of your life—or books, or music, or whatever gets you through the day—if it meant you could hear his little voice. Her little voice.

I know the twisted, breathless feeling you feel, deep inside, when someone casually asks, “You sure you want him to talk? I can’t get mine to shut up!” Clenched fists hidden in the pockets of a fleece jacket. And—as if taking a cue from your baby—you say nothing.

Like you, I’ve hesitated in checkout lines when well-meaning cashiers kindly question my son: “And how old are you, young man?” Like you, I smile—as if waiting, too—before replying for him.

I’ve hunkered down to face my child, tears racing from my eyes and his, echoing, “I don’t know what you want, baby” before going through the daily show-and-tell of objects:

“Apple? App-app-apple?” (red fruit in hand)
“Movie? M-m-movie?” (holding out a favorite DVD)
“Drink? D-d-drink?” (pouring water into a sippy cup)

I’ve marveled while talking with kids my son’s age—asking such simple questions, just to hear their answers. “What’s your favorite color?” “Blue! No, orange. No, blue!” For just a minute, I imagine what it would be like to ask my own child these questions and hear his reply.

I’ve heard kids in Target singing along with Idina Menzel: “Let it go! Let it go! Can’t hold it back anymore!”The embarrassed mom sees me, a kindred spirit with her own littles in tow. “They haven’t stopped since the DVD came out!” A shared joke between moms. She thinks I’ve been there, too. My story is too long to tell between aisles of home decor and bath towels, so I just smile and nod.

There have been times I hit the tiny “x” on my newsfeed when Facebook friends bragged about their genius toddlers. Ignorance is bliss, they say, and I don’t know if it’s bliss, but sometimes it’s better. I think you’ve probably hit that tiny “x” a few times, too.

You know what else I know?

I know the indescribable feeling of watching another child approach my son and stacking blocks, one by one, beside him. “You want to help me, Milo? Let’s build a tower!” The total joy that comes from knowing that my child is seen.

I’ve heard the pure laughter of children, my son’s friends, when they chase him. “We’re gonna get you, Milo!”

I’ve watched patient therapists capture my son’s attention and work so diligently, week after week, to elicit even a vowel sound from him.

I’ve been blessed by high school students who give up their Sunday mornings to serve as aides for my little boy. Every week, I sit beside my husband and soak in Gospel truths because of their sacrifice.

We’ve known sadness, but we’ve also known acceptance and unconditional love. I hope you have, too.

We are in this together.

 

 

Published by mamalamaneustupa

Bio My name is Shelley Neustupa. I am a mother of two cool boys and a wife of 22 years to my high school sweetheart. My oldest son attends the University of Oklahoma. Boomer! My youngest is in 2nd grade and was diagnosed with Autism and Mixed Receptive Expressive Disorder at age 2. Since his diagnosis, I promised him I would advocate and educate as hard as he works each day in therapy. I began writing and have been able to touch many parents that may be new to this journey providing them with actual experiences (not candy coated), support and resources through my entries. Writing is my therapy and my hope one day that my nonverbal son will be able to take these diaries and speak about his own journey and how autism relates to his own experiences. Who knows he and his older brother may become National Speaker’s one day? Come along on our journey to better understand our lives through the eyes of a boy with autism, his Skilled Companion dog Jude, his big brother (and best friend) and mom and dad. My raw vulnerability captures the everyday moments of our journey and will bring even more awareness. A week does not go by where we do not learn something new about ourselves and I want to share these chapters with you. My Sons Undeniable Strengths… Extremely smart and figures out things quickly. Has a memory that allows him to remember more things than I could ever hope for. Persuasive by his personality and sheepish looks. Overabundance of stamina and strength. Loves the outdoors. Enjoys life and always has fun with an unforgettable smile. You can find us here: Writer: Autism Through His Eyes Facebook Instagram YouTube Pinterest Canine Companions for Independence News Interview Cody and Skilled Companion Jude - Our Story

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