November 3, 2010 mcfadyena

Shanti, Shanti, Shanti

It’s Sanskrit and it means ‘Peace, peace, peace.’ For four and a half years, while I was wondering and waiting to find out whether Trey would take one path, lose his skills, personality, smile, voice… everything, or take the other path and have a ‘different’, but to me, still full and wonderful life, I could not find peace. I worked hard on it and could experience moments and hours of peace, but eventually, my mind would always come back to my fear.
I knew I was unable to find peace, and knew that was my goal, but just could not do it. Personally, I am still not sure how to find peace given the situation us parents, who have kids with an unknown mutation of Hunter Syndrome, are faced with. The diagnosis is unknown, but we do know that our kids will take one of 2 paths. If any of you who have gone through this unknown period and have been able to find peace, please let me know. It will help all the future parents whose kids and families are faced with this.
Where have I been for the past couple monthes? After my last post was a longer than usual road back for me. My dad told me that my every 6 month break down after a trip to UNC is predictable, and it is. However, this one was slightly different. I spent over 4 years, holding onto, praying, hoping, believing, whatever you want to call it, that Trey’s brain would be okay. Huge HUGE emotion holding onto that. And then in August, UNC told us Trey is neither in the severe or mild category. What? Well, I’m still not sure what that means. Not even Dr. Muenzer is. And I’m not sure exactly what changed for me because Trey hasn’t changed, but I think it’s that I could now let go of what I was holding onto. Trey is not in the mild category. That statement took almost everything out of me.
And right now, I’m not sure why I’m okay. Maybe it’s because I’m not in NC. 😉 Nothing personal to NC or the people in NC we see… we actually really like them! It’s just that UNC brings an extreme amount of stress. We still don’t know Trey’s path. But, we DO know that he doesn’t fit into either category, which as frustrating as that might be, I’ve adjusted to. And I’ve found peace. And it feels good. I feel good.
I was inspired to write this blog because 3 kids I know with Hunter’s are going through GA’s today for different procedures. It’s strange, because right now I’m in ‘normal’ life mode. Driving kids to soccer, floor hockey, ice hockey, dance, kickboxing. Weeks are going by and NOTHING significantly eventful has gone on. Sure there are little bits of drama or excitement here and there, but compared to the drama of facing your child’s mortality and on the flip side, fighting for your child’s life, life has been NORMAL. And it’s been wonderful. And then today is a reminder of my ‘other’ life. I have friends who are not in ‘normal’ mode right now. They are scared and full of anxiety. And I want to acknowledge that. Because I know that even though we’re doing the same things our neighbors are right now, in the next monthes, that will change for us again.
I hope that the next time I am faced with fear and anxiety, that I can hold onto the peace I am finding. What I have come to discover, is that even though our less ‘different’ kids may let us think we have control, we do not. Not over their emotions or choices, not over their lives. And I am not a generally controlling person. I am in support of whoever my children grow up to be: gay, straight, kids, no kids, married or single, university or not… but I was (and I still think I should say ‘am’… it’s a work in progress) not okay with watching my child decline. I am not okay with watching my child die. We fight and hold onto beliefs and ideas, but when it comes down to it, all we have control over is ourselves and our happiness and our peace. Trey has shown me that. So right now I am working on finding my own groundedness, because that is what I do have control over.
Melissa, Jamie, Lisa and Rob, I’m thinking of you and your little guys today.


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