NOTE: This story was provided through the CureGRIN Foundation, a Patient Worthy partner organization.
Written by Lauren Williams
A question I struggled terribly with at the beginning of this journey was, “Why me?” I just could not wrap my brain around what was happening. Was I being punished for something in my past, why did God hate me, or worse, there is NO WAY a God exists that would do something like this to us and to Carter. My belief, albeit not a very strong belief to start, in God or a higher power vanished. I was always a good person, a good sister and daughter, a good friend and wife. I must have screwed up somewhere along the way and now I was paying for it. It doesn’t help that during this extremely hard time in my life, a manager at a health food store told me that God created disabled people for the sole purpose of payback. I will admit, the scathing email I sent to management was not my first.
To comfort myself, I read and I researched like it was my full-time job. I read articles, blogs, books, medical journals, anything I could get my hands on that made me feel like I was in control. One step ahead of GRIN. I joined groups, and I mean hundreds of groups, on social media. Any group that had to do with disability, hypotonia, seizures, or a disorder I created in my head that Carter had. I read and read and read and read…and my anxiety increased and grew with each post, and each article. Still, as soon as I thought I had gotten ahead of something, Carter would be plagued with yet another issue. It was never-ending. I did not have faith. I did not have any type of faith or the “no matter what, we will be okay” mentality. How was Carter going to fit into the future life I was on the trajectory of creating? Why did I work so damn hard going to college full time WHILE working full time just to have to stop where I was in my career?
I only knew disability from what I read. And everything I read scared the hell out of me. I did not know anyone with a disability of this nature. No one in my life knew what to say to me or how to help, even those who reached out. They would say they were praying for me or God only gives special children to special parents which is a load of bullshit.
All I saw when I looked at Carter was an empty broken shell. I saw disability. I saw inability. I saw nothing. I hold a tiny bit of resentment for mothers who had the chance to truly bond with their child. I missed that entire season. I was not awarded typical motherhood. But why? I had done everything right. From diligently taking my vitamins to even going so far as to use a midwife. I took classes on hypnobirth and I craved the experience of a natural childbirth. I was so careful. And I had just recovered, mentally and physically, from a miscarriage which almost ripped my soul out. Sometimes I would even look at the dates on the calendar before I knew I was pregnant with Carter and wish I could go back while I cried myself to sleep at night.
I don’t know when the switch happened. In my mind, looking back, it wasn’t gradual. It was instantaneous. Something changed. Something between Carter and me changed. Someone between God and me…changed.
I decided to give faith a chance. My journey to this choice was not pretty. The journey once I made this choice, still not so pretty. At some point, stability happened. More like unstable stability, if that’s even a thing. I got to know people in the disability community, I got to know people in our GRIN community. I opened what is an extremely introverted life and poured it out. I POURED IT ALL OUT. I soon started to see Carter differently. I remember the first time we locked eyes, the first time he reached for something, the first time he acknowledged something in the room. I remember every single little moment. And I take nothing for granted.
During this transition, I took a class…with people…voluntarily. If that isn’t change, (by my standards at least), I don’t know what is. This class gave me a voice. It taught me how to fight for what Carter needs. It helped me to see what he deserved. I started to take all the information I was learning in this class and in my social media groups and applying it to our life. Physical therapy exercises, Occupational therapy exercises, speech therapy exercises, CVI exercises. I did them all.day.long. As the weeks went by, these exercises became habitual. Just a part of our life. Any exercise he was continuously responding to, I incorporated. And to Carter, this was all play.
After graduation, I decided to use my skills in public speaking to testify at the legislature on behalf of Carter. I decided to use my skills in communications and research to create a community of support so everyone would be able to see the strides he makes, no matter how slow or small they may seem. At some point, the transition happened and I realized it had been a very long time since I asked the question, “why me?” I remember looking around at our life and being grateful. It was no longer “why me”, now the question that fit us best was “why not?” Why not me?
In my faithful journey, I have been blessed with quite a few people in my life that have helped me see God and his grace. Instead of looking at things from a selfish perspective, it allowed me to see that my original thinking of, why do bad things happen to good people, into, Things happen to People. Good people, whatever that means. Bad people. In between people. Everyone deals with suffering in their lives. I am no different. That one statement has made more difference in my life than any article, book or journal that I have read. Once I understood this, I started to slowly unfollow a lot of the groups I was connected to. The constant reading about disability and sickness was not fulfilling the needs I had to be there for Carter. To be honest, it really brought me down. I had to put disability down for a moment and find myself again.
Low and behold, in finding myself, I found a relationship with Carter that I only dreamed of having. I know I always say I was made to be his mother, but I mean this with every part of my soul. It was my destiny. It saved me. He saved my life. He made my world crash down and we rebuilt this beautiful kingdom together. I have never known anyone like I know him. I know his body, his breaths, his chunky fingers, his sweet, innie bellybutton. I know how much wax his ears produce, I know exactly where his nissen is located in his body, I know the little bump on his spine that rubs his highchair. I may know him better than I know myself. This is what I live for.
Each night, when I pray, I tell God how grateful I am. For so much in my life, but mostly for Carter. For giving me someone that makes life worth living.
