I started this blog 2 year’s ago. TWO year’s! I have so much to share and yet I have been afraid to put it all into words because then it is out there. Until today.
First, let me introduce myself. My name is Kendra. I am a wife, mom to one little boy who is 7, a nurse, a homeschool teacher, and advocate for children with Apraxia. I started this blog to share my personal journey through the (at times) choppy waters of special needs parenting. My hope is to bring comfort to those who can relate, to encourage, and to inspire. Maybe even make you laugh along the way.
Ok, so let me get to it. This morning I had one of those eye opening, kick you in the ass moments. At church of all places. Our morning started off like any other typical Sunday morning- get up, make breakfast, get dressed and try to get out the door to make it to church on time. Church (or any structured setting) is very difficult for our son. I mentioned above that he has Apraxia, which I will explain more about at the end of this blog but in short, it is a complicated neurological disorder that effects a child’s ability to produce intelligible speech. It also happens to be the most severe of all speech disorders in children. Along with Apraxia, some children have comorbidities that are associated with Apraxia. For my son, that comorbidity is Sensory Processing Disorder. In other words, he is constantly seeking some sort of sensory input and at times it is VERY challenging to deal with. From the moment he wakes up in the morning and until he goes to bed at night, he is at 110%. There is not enough coffee in the world to keep up with him. Believe me, I have tried. Anyways, at church this morning my son wanted to participate in the children’s offering with our pastor. I always cringe at this because I am afraid of how he will react, or even worse, I am afraid of how other people will react. The looks and the stares. I know. I know. Who cares right? That is how I feel in most cases, but for some reason today I did care, and it got the best of me. Almost immediately after we joined the other kids and sat down (I went with him) my son began to lay across the steps we were sitting on and began to fake cough and ask for a drink of water. I asked him to wait until we were finished and he began to whine and hit himself in the arm out of frustration. I in turn took his hands and whispered in a not so calm tone, STOP IT NOW!! He began to cry immediately and we had to exit the congregation and sit in the hall. The moment I stood up I could feel the eye’s on me. Or so I thought. In my mind I was thinking “everyone probably thinks I am the WORST mother on the planet”. And maybe at that moment I was not the best mother. But what really hit me was my own behavior. You see, it wasn’t my son’s fault that he acted the way he did. He truly can’t help it. My reaction was out of frustration I felt myself. Frustration because deep down I still wish I had a child who could participate in these activities like other kids his age. Frustration because I realized in that very moment that I have not accepted my son for who he is. Sounds awful doesn’t it? Trust me, sharing this part of me is NOT easy. Ever since I knew my son was delayed developmentally, I have lived in a world of “maybe he will be better next year” “maybe this time next year he will be able to talk” “maybe it will get easier as he get’s older”. Truth is, it has not gotten any easier, in fact it has gotten harder. Why? Because it is never ending. The therapies, the out of pocket expense of therapies, not being able to have a conversation with my son about even the smallest thing about his day, and not knowing what the future holds. I know it could be so so much worse, but that doesn’t take away how hard this all is and how heartbreaking it is. After our incident, we got ourselves put back together and I brought my son to the children’s Sunday school while I listened to the sermon. As I sat there and took a deep breath, I began to cry. I couldn’t hold it back and tears just started to stream down my face. And you know what the best part was? I DID NOT CARE! It was such a relief. Or shall I say it was more of a release. At the end of the sermon our Pastor said something to me on the way out of church that hit me like a ton of bricks and made me cry even more. He said ” all are welcome here and he is doing GREAT”! He was right. He IS doing great and so am I. At the end of the day all we can do is take a deep breath and remember that we are all doing the best we can.
Today I am deciding to let it all go. Accept that I can’t change things or take back the mistakes I have made along this journey. Live in the moment and embrace the hard work and progress my son has made and continues to make. Today I choose to let go of the constant life sucking cycle of “what if’s” and allow myself to be blessed.
Blessed to have a child who makes me slow down and soak in the beauty of this life.
Blessed with the scenic route.
For more information about Apraxia please visit http://www.apraxia-kids.org