Sunday, January 22, 2012

Three Noahs

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I made an appointment for Noah's haircut this time, making it more difficult to be turned away. Three children all with the name of Noah who also all happened to be three years old, all walked in for appointments at the same time. We all joked with odds like that we should all play the lottery. Ironically, the same hairstylist that turned us away a few nights previous was the one who had to take Noah for his appointment. She was overly nice, asking what seemed a thousand times if we were satisfied with Noah's haircut, hopeful and optimistic about all the things he'd be able to do in the future. I think it was her way of apologizing without really saying the words. I let it be. As really I suppose that is what God's Grace is really all about - Noah has his own ways of wedging himself into people's hearts and changing them for the better. He obviously didn't need my intervention to open her eyes and her heart.

Chris and I took a brave step last night, we all went out to dinner as a family, something we haven't done well before Luke was born. We have a pediatric wheelchair on loan, we don't get to keep it, and we will only have it a few weeks. That is a huge regret I have is letting therapists pick Noah's pediatric wheelchair at only 10 months of age. The dreaded Kidcart. I hate that thing. I seriously hate that thing. Every time I look at it, I'm reminded about what a mistake it truly was. At the time being so very new to the world of special needs, I had no idea there were a multitude of other options out there. The Kidcart was presented to me the only fabulous option for Noah, so it was ordered and received February of 2010. Noah never ever would sit in that chair, he hooked his arms on the rests causing himself injury, his equipment vendor attempted to take the arm rests off, of course disabling the tray feature simultaneously, adjusting the hard foam in the back and seat to make it more comfortable, but that seat was never a match for Noah. Now of course since Noah has at one time been given a pediatric stroller/wheelchair, Medicaid doesn't want to give us another one - even nearly two years later. So we operate only from traditional strollers for Noah. He has no chair to sit up and truly see the world.

I told Chris we need to take advantage of the loaned equipment and go to dinner. Brave move on my part. As I wasn't sure how we'd be perceived in public with an obviously handicapped child in a wheelchair and a small baby. People pass judgment rather quickly. I called Texas Roadhouse, Chris' favorite place to eat, and explained we'd be coming with a wheelchair and needed a sling for a baby carrier, they were amazingly nice and said they'd hold a table for us that would accommodate us. I thought maybe we'd be forced to wait, but we were able to get right in, a table already set up for wheelchair access and a sling to hold the baby carrier. What a relief that it was that easy. We sat down and Chris set Noah up to eat, as he expects to eat right upon arrival. I sat and watched other people watch us. Some looked on with tremendous admiration, offering me slight smiles. I seen pity and sadness in the eyes of others. And even expressions of relief. Relief that it was me - and not them. An expression I'm familiar with, as I gave that same expression to a mother and child in a doctor's waiting room about a month prior to Noah's birth. I was so thankful and relieved that it would "never" be me, as I would give birth to a healthy baby boy. But that is just it - you think things like this can't happen to you, but they can.

Chris and I ordered items from the menu that aren't typical of us, maybe staying with the theme "different is okay," the outing went off without a hitch. And it made me long even more for having a chair that I could pull right up to a table and have Noah participate with us. It was refreshing to feel like we were somehow rejoining the world. Trying to become a part of it again. I think it was healthy for all of us. As we left the restaurant it had grown so crowded that it was back to back people. No one could move. Yet it was like the sea parting as Noah made his way to the door, leading us in his chair, lighting up the way with his ocean blue eyes and tender smile. He was happy.

"Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living." Sandra Bullock in "Hope Floats."


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

Thursday, January 19, 2012

I Chase Small Miracles

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Christmas break from therapy spoiled us a little. I admit it really is nice to take a break sometimes from therapy. The scheduling, the phone calls, the people in and out of the house, getting both boys fed, ready and out the door in time to make it place to place. Sometimes I don't know who is more tired, Noah or me. Yet we trudge on because we know that we must - that Noah needs this extensive team of help.

There are days, like today, where I wake up with a crushed heart that is in a million teeny tiny pieces. So tiny it's impossible to collect them all and glue yourself back in time to present yourself to the world as a mom who isn't hurting over a child that is limited in physical ability. I spend my drive to therapy with on and off again tears, thinking, hoping, thinking some more and ultimately praying as hard as one can. Just let him sit... just him talk. And just when all feels lost, a small miracle happens that again somehow sparks that ultimate "hope."

Noah was asked to kick his legs in the water today by his therapist. I glanced over realized that he was kicking and immediately asked the therapist: "Are you doing that?" She looks at me with a huge smile and excitement and says no he's doing it all on his own. 17 times continuous kicking his legs in the water by himself upon request. Then another 20 intermittent times upon request. I was in awe. He understood we asked him to kick! And he was physically able to deliver upon that request. Then we worked on grab and releasing of objects in the water. Noah has never been particularly good at grasping objects. Today he refused to let them go and give them to me! I am not sure I even have words to describe what watching something your child has never been able to do for the first time is like.

I wish Chris had been there, its kind of the equivalent to watching your child say a first word or a first step. This was a first for Noah and I wish his daddy could have witnessed this amazing moment with me. A sense of hope had again re-sparked as I tried to piece all those shattered bitty bits of my heart back together to make it through the rest of my day.

Things were going rather well I suppose until we attempted to get Noah's haircut this evening. We generally walk-in with no problem, however tonight Noah was refused. The hairstylist was just finishing up with a child and as I was putting my name on the list told me that she had an appointment right after this one (which you could clearly tell was not the case as she smiled and giggled to a friend next to her), in any event she said the store's policy was to take no child after 6:40pm, mind you we arrived at promptly at 6pm, and I can't imagine any child would get a 40 minute haircut. I've gotten very good at detecting lies when it comes to Noah's special needs. Make an excuse - any excuse so you don't have to help the "special kid".... honesty I think would hurt less than the lie. Noah has never had the same hairstylist anytime that we've went, but maybe I need to start a relationship with just one hairstylist that feels comfortable helping us and just go to that particular one each time. Ironically I didn't come home in a heaping mess of tears, maybe it was Noah's successful day of kicking and grasping, or maybe it was Chris' lovingly rubbing my neck on the way home to silently say I understand you're hurting and I want to make it all better - it certainly isn't because I am developing a thick skin to the cruelty that is out there. I am sure if I dwelled on it more this evening the sting would cause a good cry.

I feel the most badly for Noah as cognitively he is very aware - and I mean super aware, he wanted a haircut, and did not understand why we were leaving without one. Uncontrollable tears and screaming as we packed him back in the car. We pulled over at Home Depot even though we needed nothing there, just to make him feel like we had a destination and a purpose. He stopped crying immediately and was soothed that we were entering a store. Oh, how I remember the days when it was the opposite and I couldn't take him anywhere! Nonetheless, we had found a way to soothe our distraught child who was looking forward to a haircut and didn't get one. Thank goodness Luke has the disposition that he does, he sits on the sidelines very quietly as Chris and I just do what we have to do to make things work for Noah. For tonight Chris and I think will try to have a mutual laugh over Noah and Luke fighting in their own way over a car toy... and start over again tomorrow.


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