Friday, February 17, 2012

Signature Struggles

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Each day continues to have it's own individual signature struggle. Today I had to take Luke to the doctor, and had to take Noah with us. There is no one to call for help - no extra set of hands or even someone to stay with him. Chris and my mom work through the day, so I'm on my own. I had hoped Noah would be calm and collected, I coached him; asked him as if I was reasoning with a child that could easily communicate and agree to my terms, but to no avail. The moment we walked through the doctor's office doors, the hysterical screaming started. He has a tremendously negative memory association with anything relating to any doctor's office. I know he was disrupting all around him, some people realized Noah was handicapped as he arched and flung his arms about smacking me in the face, others probably thought he was simply a misbehaving tantruming child as they looked at me with distain for why I couldn't get my child under control. Finally a nurse asked if she could help me, I am always hesitant, as I know that Noah often has difficulties with strangers, I told her the only way he'd calm is if she walked him around the building outside. She was so willing to help and off they went outside to stroll around while I dealt with Luke. I felt bad as although that nurse has a heart of gold for Noah, I know that she didn't sign up for appeasing a special needs child on a walk today. Some days you have to admit you can't do it all, and today was one of those days for me. As hard as I try to juggle both Noah's needs and Luke's needs, there are days when I simply need help.

Noah's equipment and therapy needs continue to increase with little to no help from Medicaid. Chris and I struggle tremendously with asking for help, but are considering opening something called a "gofundme" account on Noah's behalf to aid us in getting him all that we can't. Noah needs specialized shoes, the quote is $193.50, plus $30 shipping and handling, he would likely need another pair in the fall, equally as expensive. Chris and I have realized for sometime that we lack adequate seating and creature comforts for Noah, he spends his entire day laying on the floor, there is no other place for me to put him. He has no stander, no corner-sitter, no chair, nothing. He has nothing. I searched for options for Noah that would both make him comfortable and make him be able to participate with us, and stumbled on something called a Chill-Out-Chair. I made an inquiry to the maker, and with tremendous kindness, a trial chair was offered to Noah to try in-home. It still needs to be transported to a location I can closely pick it up at, but it should hopefully be available for him to try this coming Monday. I have a feeling we will fall in love with it, but the base price for the chair is $1,500, and that doesn't include tray features, custom foam features or a roll bar. Most of Noah's therapies are also out of pocket costs, and we are having trouble keeping up, yet we recognize that Noah genuinely needs all of these therapies to help him with his continued recovery of his gross and fine motor skills.

Over the past three years I've faced on again and off again criticism for being honest with our personal struggles on Noah's special need journey. Many really want you to depict nothing else other painting everything rosy. While even others in the special needs community feel that you are doing a dis-service to special needs children everywhere if you come off as less that the strongest, happiest, thrilled with the land of special needs person on the block. I however feel that is simply attempting to hide behind the pain. I don't want to be fake, I don't want to sugar coat how I'm feeling, what life is like for Noah. Sure we have days that fill us with moments of joy, how can you not when God grants you the gift of your child waking up and smiling at you each morning, but without a doubt heartache and struggles exist daily.

I wrote my first guest blog for Handicap This that was published today. Handicap This was formed by two men, Mike Berkson, born with cerebral palsy and Tim Wambach, Mike's long-time companion, on a mission to further awareness about judgment, and breaking down the barriers with those with handicaps and reminding everyone of each other's potential regardless of physical challenges one may face. You can find my guest blog at the following link:

"Once all struggle is grasped, miracles are possible." Mao Tse-Tung


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