Thursday, October 13, 2011

Share Your Story

Worry is just about the worst form of mental activity there is—next to hate, which is deeply self destructive. Worry is pointless. It is wasted mental energy." Neale Donald Walsch, Conversations with God

Worry and fear are powerful emotions that often consume large parts of my day. I also understand I could worry until the cows come home and it wouldn't necessarily change an outcome. But I don't know how to turn my worry and fear over to God. As mothers, to some degree we worry about our children, always. But to worry over a special needs child is a million times worse. It almost feels like a heaviness lays upon my heart. I am afraid to breathe, afraid to move, afraid the other shoe could drop at anytime. I am always on guard. I have grown into Noah's voice... his defender. I wish I could eliminate this immense worry and fear I have over Noah. I am scared for him - always.

It doesn't take much to put me on guard's edge. Noah grinding his teeth while readjusting himself in the night. A thousand things run through my head since it isn't characteristic for him. Is he uncomfortable? too cold? upset? possible breathing or seizure? My mind comes up with a million possibilities for simply hearing him clinch his teeth in the night. I wake up Chris briefly for his assessment to verify if I have pushed my inner alarm button prematurely. He reassures me all is okay, even getting out of bed to peak at Noah to help ease my concern. Yet I remain on duty. Wide awake listening for any potential signs of distress. An hour and twenty-two minutes later Noah laughs in his sleep and I finally give myself permission to close my eyes.

Everyday Noah has some kind of therapy with Luke in tow. My days are so fast often time leaving me really little time to even plan dinner for my family. My house has never been messier. Something that I am having trouble getting used to. Everything used to be so perfectly polished and cleaned. Now I find myself tripping over toys, baby gear and large therapy equipment. I am trying to learn to go with the flow. Everyday I learn something. Noah and Luke are my guides.

These are three things I learned today:

1) Don't write a therapy check in advance on a windy day unless you plan to sprint faster than a cheetah across 3 parking lots to chase after it.

2) It's okay to bring your child to therapy in his pajamas, even if you get a multitude of stares...

3) I will never ever have clothes that don't contain drool, spit, or splattered food on them ever again.

Noah and I were listening to a friend's Christian Music CD on the way home from therapy - Megan Isaacson, and her new CD titled The Living Room. We were in the car and I could have sworn I heard him try to sing to me. It was amazing. He didn't have words, but he was humming. Here I am at the drive thru at Starbucks crying. Because my little Noah was trying out his heavenly voice. The cashier asked if she could help me, I told her they were happy tears. She smiled and told me to have a good day. It took my breath away as I simply thanked God for just that small moment. I find such tremendous beauty in such small joys. There is nothing like else like it. It is the most intense feeling watching Noah do these miraculous things. I keep telling myself if he did it once, he will find a way to do it again.

Chris and I finally decided on Halloween costumes for the boys. Luke was easy... naturally he will be a little lion, Noah however was a bit more difficult. I've seen so many special needs networking postings with Halloween costumes designed around wheelchairs and walkers, however for Noah we're still in the in-between stage, as he isn't proficient in walking in a walker, nor has Medicaid "gifted" us with a pediatric wheelchair that will work for him. There are some mighty creative special needs parents out there who truly give a lot of effort and thought about making Halloween costumes that surround adaptive devices. We, however went simple and cheap this year. Noah will be Dale Earnhardt, Jr. #88, Chris' favorite NASCAR race driver. We found a new Dale Earnhardt, Jr. costume for a mere $4.97. And I think he'll be super cute. We almost went with Cookie Monster, but Noah was Elmo last year and although his skills are often infant-like, he is now a toddler and growing up, and a race car driver seemed maybe more age-appropriate for him.

And before I leave you with all my rambling feelings and Noah updates. I must share with you a story about a man named Christopher Coleman who pronounced dead at birth, and without oxygen at least fifteen minutes, much like that of Noah's long thirteen minutes, his story literally leaves me in tears every time I watch it. It makes me believe in infinite possibilities for my Noah. I promise never to give up on him. I will believe all things are possible for him. And I will forever and always ask for all that come in contact with him and our family... pray. Pray so hard and please don't stop praying for our little Noah. I would love nothing more if God called Noah to share his story. For now, I share that story for him. Someday I hope he will write the words.

(Remember to pause Noah's music to watch the video) You can also double click the screen directly for a larger view or cut and paste the Youtube link for viewing:


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