My friend, Doc has a knack for being frank. He has the ability to say things that if spoken by almost anyone else, would bring me to tears.
We were enjoying brunch a few Saturdays ago to celebrate Matt’s birthday and were discussing possible clinical trial options for Noah. We value Doc’s opinion for it’s forthright nature while maintaining a tender touch. I have always felt like he truly puts himself in our position (as much as one can). He consistently surprises me with the depth of his comments or questions. He has grieved with us and celebrated with us.
“Noah is getting older, his delays are going to be more apparent. Let’s figure out what we can do to get him where he needs to be.”
Pulling a four year old through the grocery store while he is whining in a monotone manner draws attention. I’ll be honest, I have grown a pretty thick skin to stares and the occasional point and whisper. After his diagnosis, I was deeply concerned with how Noah would appear to others, even family. I would be lying if I said I was not occasionally embarrassed though. I remind myself that this is my son, MY son. Yes, that son is whining because he is at times, quite impulsive and needs to eat instantly. Yes, that son is frustrated that he is being forced to walk for an extended distance when he would typically be riding in the cart or helping push. Yes, that son is chewing on his coat in a feverish way. Yes, I have typically tried to center him with every skill I have been taught. No, he is not fussing for no reason, but I do not have the time or interest in explaining that to the people watching and wondering.
These are the situations where I want for Noah to be adjusted. I want for him to be independent and able to control his sensory needs. Noah is a fairly quick learner, considering his learning challenges. But there is still a gap there… a gap that I believe we can bridge. I fully believe.
I will admit that it is rare to be utterly comfortable around others, even friends and some family. This past week, we traveled home to Kansas to visit our family. It was a wonderfully fulfilling trip, albeit quick. My family has always shown an implicit acceptance of Noah, before, during, and after the diagnosis. If anything, I feel as if they have drawn closer to him afterwards. It is an undeniable love… all the way down to his bff Ace… although, perhaps that is where the deepest love resides, within a 4 year old boy. Although he is small, his love for his cousin Noah is markedly apparent.
One afternoon while we were home, the kids were playing. Noah walked up with a ball in his hands and a line of drool falling from his lip. Without pause, my sister Chelsea reached out her hand wiping the drool from Noah’s chin. As she wiped it on her pant leg, I felt the deepest sense of gratitude wash over me. This small act let me know that she is not afraid of my son. She is not afraid of his differences. She is not afraid to communicate with him in a way that is different from everyone else in her life. She is not afraid.
It made me brave.
Yes, Noah’s differences are becoming more apparent. Yes, I care. Yes, we will do everything in our power to find a way for him “to get where he needs to be”, whether it be through clinical trials or repetition and rigorous therapy, he will get there. In the meantime, I am eternally thankful for the unyielding acceptance that is so rarely felt.