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.