Sunday, October 14, 2012

Without Wheels

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The Sweet Pumpkin
Noah and Daddy in the Pumpkin Patch
Pumpkin Watching
Happy About Pumpkins
This week I've felt like I'm stuck in a glass jar - I can see out, but no one can hear me - no one wants to hear me. I'm simply exhausted from filling out application after application for foundation help, only to receive multiple denials time after time. I feel like I waste hours searching for help that will never come - help that isn't there - that will never be there for Noah. I write countless emails, make thousands of phone calls in the hopes of making Noah's life better - usually without response no matter how nice or how firm I go about it. Which frustrates me even more - being ignored. No one has the courtesy of good customer service, no one corresponds timely, no one returns your calls or even acknowledges your efforts - no one wants to help. I know that Noah is another name to them, I know he's no one's child but mine. I know that no one can feel our collective family pain, that Noah's quality of life matters to no one - I'll try to line up product trials for Noah to no avail. After all I'm stuck in this glass jar and no one can hear my pleas for help for my child.

We went to the pumpkin patch today. It was busier than I had expected it to be on a quiet Sunday afternoon. The layout was different, as it usually is from year to year. The new routes to the pumpkins were exceptionally bumpy and the ground was deeply grooved from one row of pumpkins to the next. Something I don't ever remember it being like before. Noah's small stroller did not do well in the dirt and he grew increasingly agitated upon watching his little brother move freely from pumpkin to pumpkin. How could he not get frustrated at watching something he only dreams he could do? So Chris carried him everywhere and he was happy that he had his dad's legs to work for him. Without wheels is always so much better. Many of the pumpkins were odd, broken, rotten or very disheveled this year. I looked on in a field of orange thinking that most likely these pumpkins would never be picked - they weren't perfect. Had no capabilities of ever being perfect. Green on one side, too lop sided to ever sit to display a carving, sunken in from being stepped on - not to mention overly priced this year at $6 a pumpkin - their destiny seemed doomed. I turned to look at Noah after having taken a picture of little Luke bending down to inspect a crushed pumpkin to find that Noah's daddy had put a small ugly green pumpkin in Noah's lap. Noah looked at it in awe he wasn't digesting the pumpkin's many imperfections but he was embracing its personal characteristics - enchanted with its difference from the sea of orange. Only Noah could truly appreciate that ugly green pumpkin - only he would know the true meaning of what it's like to be different and over-looked.

I don't know what the purpose of it all is. It seems unfair. This life I'm living seems so beautiful and tremendously devastating at the same time. It's almost as if God takes your most beautiful most treasured vase, also known as your life, and throws it hard to the ground and shatters it to a million pieces and asks you not to be sad about it, but instead asks you to put the pieces back together and look past the cracks and shards that have now exist in place of that once intact vase. I'm trying to not to be doleful about Noah's condition. But I can't help but carry this heavy heart with me always. It's a journey that I often have trouble putting into words, explaining to others. The challenges are great - the heartache even greater. I know everyone has their own set of pains. Although it's hard to relate to some people when their only crisis is that Starbucks didn't get their order right or that they forgot to fold their laundry and it wrinkled. And you wonder why God you couldn't break their vase? - you had to break mine...

Noah's moods have been somewhat pensive and yet focused. A transition of seasons still proving to be challenging. A lack of summer routine and activities. And changes in Noah of any kind are always distressing for me. I'm genuinely doing the best I can do and many times it feels like people don't recognize how hard I'm truly trying. I know that being a special needs mom doesn't entitle me to a pat on the back or a hey you're doing a great job - but sometimes you still crave that affirmation.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.