Five things I have learned in Five years raising a child with GRIN Disorder

Five years doesn't seem like such a long time, but somehow it has both flown by and begrudgingly inched forward. 

"Let go of the illusion that it could have been any different...."

Say that to me five years ago and I would have laughed in your face. Watching the last five years unravel in a myriad of extremely unplanned ways has flipped the world I have lived in for over 30 years, on it's back. Hi everyone. My name is Lauren and I am a recovering control freak. 

Nothing in our little family life has gone to plan. It wasn't even like we took the wrong fork in the road or ended up in Holland. Our carriage sped off a cliff  in some unknown country and nose-dived into a fiery canyon. Fireworks and all. Five years later, we are still rebuilding our carriage and continuously cleaning off the ash from our bodies. You'd think that the flaming remains of what our life was would have forced some sort of relinquishment of control on my part, but no. In fact, I held on tighter, as if that was possible. In my mind, I KNEW I could fix this. I KNEW I would find all of the answers. The underlying fears of letting go of the control I thought that I had, the control over exactly how our lives were supposed to be, proved to be stronger than any white flag I had at my disposal. 

How. Wrong. I. Was.

Carter bursting into our lives, the little force of nature that he is, has taught us more things than I think I will ever be able to teach him. I could easily rattle off quite a few life lessons, but I have managed to narrow it down to five. Five life-changing lessons. 

5. Acceptance. I bartered with God way too many times when Carter was an infant. I begged for eye contact, weight gain, and for him to be happy. None of which were answered according to MY plan. As we moved forward and I was realizing my worst fears, I prayed that if he did have challenges, it would only be mobility. That didn't happen, so I prayed for no challenges cognitively. That didn't happen. I was left, in the end, just praying for his quality of life. I sat down and told myself, life cannot continue like this. I love him unconditionally, regardless of his challenges. Once I accepted that this is our life moving forward, so much of the stress of the "What Ifs" melted away. Yes, Life WILL be hard. Disabled or not, no one is guaranteed a life free of challenges. Accepting this has, funnily enough, made life less difficult. 

4. Communication is SO many things. I dreaded the thought of not being able to understand what Carter wanted or needed, and some days, that is still the case. I dreaded him not being able to understand the things WE wanted and needed. Also, still the case. But communication is so much more than words. Its body movements, eye shifts, arm bangs, random noises, and expressions. I have never felt as close to anyone, as I do with Carter when we just get each other. Those moments stand still in time. Knowing he understood me and had the strength to respond , intentionally, as only he can, is a feeling I wish more people had the chance to experience. 

3. Ask for what you need. If you don't ask for help, you will never succeed. Period. I have always had a hard time with this. My belief in self-reliance was so strong, it was uncomfortable admitting I needed help. But we cannot do this life without a village. Without support. People want to help. 

2. Give up control. This was, and is, the hardest emotion I have had to process. I never in a million years could have done this without therapy. It is a job that never ends and I am eternally working on it with the mental health tools in my toolbox. None of this is under my control. I am working to stop dwelling on the unknown. I have more patience and I allow myself rest and time for me. All the research in the world won't give us a new life. So I focus on today. 

1. There is so much beauty found in unexpected places. Carter's disability does NOT determine his ability. I have stopped focusing on the next milestone. I sit with Carter while he smiles and laughs at the wind blowing and the birds chirping. Things that seem trivial in our world, are HUGE in Carter's world. A kiss on the cheek, his head on my lap, a song in his ear. We take nothing for granted and celebrate every single accomplishment. Every piece matters and every piece is beautiful. 

Above all, Carter has opened my eyes to the innate value of a human being. We all work so hard to achieve goals that society has deemed as success. When we aren't fulfilled, we keep reaching for more, hoping to get that feeling of satisfaction. Carter has no expectations. He doesn't care about what presents he gets for his birthday or what "Johnny" said about him in class. He doesn't think about tomorrow or worry about his past. He loves music and singing and twirling in circles in his swing. He loves clapping, destroying my home and snuggling into my neck after a long day. Carter lives for today.

This is a life I wish more people had a chance to live. I wouldn't trade it for the world. 

Carter may not be the child I thought I wanted, but boy is he the child I needed.