You know that “tampon box tower” at the grocery store? The one some young kid giggled about the whole time he stacked it. He knew that someone would knock it down and hopefully he would be there to see it. Well let me introduce you to the man who would brave that tower (even knock it over) for me. The very first man I ever loved, my dad. I think I have introduced you to all my immediate family except my dad. Let me tell you how he fits in to my NMO story.
My dad has been the one present any time something has happened to me. When I was pregnant with the twins, he was the one who took me to most of my appointments. I was on bed rest towards the end of my pregnancy so he would drive the long way just so I could be out a little longer. He had a truck at that time, and I couldn’t even get up into it. He fixed that too. He kept a step ladder in the back for me. That’s right folks, he is amazing!
He has been there for everything. He was with me when I went into labor with both pregnancies, kidney stones, even staying up all night to help with sick babies. He has laughed with and at me, hugged me while I cried and is always the first to give me a reality check and tell me to straighten up. So, now you know all the mushy Hallmark card stuff, let me tell you the NMO reality stuff.
My dad is in “hope” about my illness. He “hopes” I will get better and he “hopes” I won’t get worse. He probably won’t read this blog. He tries to keep me from thinking about it. Sometimes when my eye isn’t working very well and I mention it to him he will usually say, something like, “maybe you are just tired.” I think it hurts him to think about it. I’m sure it does. I hate when my kids are sick and I want to fix it, any good parent does. Unfortunately, though, you can’t fix this with Tylenol or a band-aid like you can with so many other illnesses.
As a matter of fact, I have never even heard him say NMO. He calls me every single morning just to “check in.” If there is something going on with me or if I sound tired, he will say, “do you think it’s your stuff?” He may not say NMO, but I know he hates it.
There are some weeks that when Friday rolls around I feel like I just can’t take another step. I promise you I don’t tell him or ask for pity; I try not to talk about it all. But, on those weeks he seems to know because he will call me and ask if he and mom can keep the kids overnight or if he can come get Olivia for the day. His timing is impeccable. I am extremely grateful for it.
He has also been there for some pretty funny NMO moments too. The place where my parents own property on Hilton Head Island is right on the water. There are plenty of sea gulls flying around. One time it was just he and I in the car and we were parking, so we were driving very slowly. My bad eye is on my left side, coincidentally, so is the drivers’ side of the car. Out of nowhere I yelled, “Dad, get down!” And I ducked. He hit the brakes and luckily we were in that tiny little lot. He said, “Julie! What the hell are you doing?!” I explained to him that there was a sea gull headed straight for his head. I was wrong though because there weren’t any sea gulls around at that moment. But there were a couple large leaves, so I am assuming that is what I saw. I scared him so badly he shifted the car into park and just sat in the middle of the lot. I explained that I was just saving his life. Sea gull to the temple could equal death. We still talk about it every year when we pull in that lot for the first time.
It seems like a lot of the funny moments happen on Hilton Head Island. My dad is always great about taking the kids to tennis and letting mom and I have a day on the beach. I love those days. On one of those days I got up and went to the window and pulled back the curtain to disappointment. It looked so dark to me I just knew it was going to rain. I texted dad with anger in my fingertips to tell him Mother Nature was sabotaging me. He was just across the hall, so he came over and asked why I thought it was going to rain. I pointed outside to the dark clouds; my day was completely ruined. He told me I was crazy that the sky was beautiful and crystal clear. He told me that “my stuff” was messing with me. “My stuff” not “my NMO”. He never says it.
He does his best to make me see the best in everything. After I left the urologist with my sample bag of catheters and called my mom (I know you’ve already heard this story), Mom told Dad what was going on and he called me and told me to keep my head up. He even said this wasn’t so bad because it would make me feel better. He always points out a time that I did something harder or important. I am pretty sure this time he said, “you have had to do harder things. You carried and gave birth to twins; you can do this.” His voice is full of encouragement, but I know it is disguising worry.
My absolute favorite thing to do with my dad since I have become an adult is to play tennis. We used to have so much fun. We were competitive and we played for pride and honor. About 8 years ago we were having one of our best matches (I always play the best with him.) He hit a fantastic drop shot and I somehow tripped trying to get to it. I fell right on my head. It knocked me out for a minute. When I came to, he was standing over top of me very calmly and had even summoned a doctor playing next to us to come check me out. The next thing I know we are headed to the ER but not before he gave me his jacket because I was so sick to my stomach. He knew I would make myself sicker trying not to toss my cookies in his car. He sacrificed his new Adidas jacket. I guess I still owe him one. **On a side note this is when mom thinks my NMO started showing itself. I have had it forever it was just hidden in me somewhere and decided to start showing up that day.
I can’t play tennis like that with him anymore. That is one of the things that makes me the maddest about this stupid disease. That was “our thing.” I loved it and I really miss it. He is my favorite playing partner, coach and tennis buddy.
NMO really does affect my whole family. Dad and I hope I can get this new medicine and it will fix it all. When that happens, I am finally going to beat him. I have never done that, not even once. Those 3 dumb letters can’t have my tennis with dad, I will get it back. I won’t let it win!
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