This is a marathon. This neurofibromatosis journey. I wish it was a quick fix and easy answer but unfortunately it’s not. We are slowly coming to terms with the fact that there will be surgeries, MRIs, specialists in our future. I’m pretty sure we’ll learn all of the roads in downtown Atlanta in a very short time. We’ll know all the “good” nurses who can get the iv in on a first stick. All of that.
It’s so easy in today’s society to expect a quick fix. Easy answer. When people find out she had surgery to remove “some” of her tumor they automatically assume that everything is good now. She’s cured. She’s healed. Truth is, she’s not. Genetic disorders just can’t go away with a surgery. We know looking at the history of her plexiform and looking at the history of plexiforms in a broad scope, that it will grow. Our prayer is that she grows faster than it but that is something we won’t know.
Sometimes I hate running this journey. I get angry and frustrated and just want to hit something (wishing we could join a gym for that very purpose). Some days it’s a constant battle and constant reminder that I am not in control. I have to remind myself countless times that God is in control. I know that He knows what Emmie needs. We know that nothing for our Super Em will happen without Him knowing about it first. Yes, this is a marathon, but we are so grateful we are not running it alone. Our God is in the lead and we have some pretty amazing people who are helping us take that next step. And the next. And the next. When we grow weary there are others who are picking us up and running with us.
And sometimes, I don’t even realize we are running this race. She is laughing and smiling and trying her best to talk. She loves her cat and dogs with passion and is starting to explore away from me every day. Then, we get her MRI report and the words are there. Staring at me. Taunting me and making sure to remind me that Emmie on the outside is a rockstar but inside, we are waiting and watching very closely. Severe kyphosis and large plexiform neurofibroma. A year ago we would have told you those were made up Dr. Seuss type words. Today, we know better. Yes, we focus on what a super girl Emmie is, but those words are always in the back of our minds and we know we are just waiting and watching to see.
We actually forget about the brace. Like the time we were in the hardware store and the cashier asked Mark if there was an accident. Mark, who was working on paying, was a bit embarrassed because Malachi had an “accident” and he thought the guy could smell it. He just shrugged it off and said something about it happening sometimes. He didn’t even think about Emmie in her brace. Thankfully, we were able to recover and explain her brace! It’s amazing how, now, that is just a part of Emmie. It’s what makes her the super hero she is.
As an update, we are on hold for the clinical trial since the plexiform was stable after three months. So, we’re praying we don’t see Dr. W (as outstanding as he is) until December. And that the plexiform does not cause any issues.
Emmie’s added another running partner. I admitted a need for help in getting her closer to independent walking and requested a referral. She can cruise with the best of them. She can also let go and walk a good distance. But she’s missing just a few things. She can’t stand up without using mama or daddy. She can’t stand from sitting. She can’t roll over in her brace (there are screws sticking out and it’s quite painful or her). And I’m tired, ya’ll. I needed someone to come along side of us and give us clear guidance on how to get Emmie to be as independent as can be. So, she had a physical therapy evaluation with an awesome therapist and wonderful long-time family friend. He did see areas where he could help her. Help me. He doesn’t think it will take her long to get going and neither do I. We just need a little guidance and she needs a good kick in the pants boost in the right direction.
