Watch Out for the Seagull

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!

I'll bring the plates

People lie.  Two words, no truer sentence has ever been typed.  Unfortunately, we lie because we think we have to.  Everyone feels judged.  Thanks to social media they are judged.  Be honest with yourself (no one will know) do you troll Facebook and sit in shock over things you read and see?
Especially us mommas.  No matter what we always feel like someone is better than us.  Or at least that is how I feel.  My guess is you do too (wink).

I know I have mentioned several times that we have 4 active children, and I'll probably mention it again too.  They all play sports and they are all competitive and time consuming.  Our family is "blended".  Go ahead and judge that one too, if you must.  But because we are "blended" we try to make sure every child gets the same amount of time and attention.  That is not an easy task.  Quite frankly, many times its darn near impossible.

Every team has a team mom or some form of organizer.  This is one time that being on the NMO spectrum isn't terrible, but it is kind of a Catch 22.  I hate to even type this but it's true so here goes;
I am no longer dependable.  I never know when I may "flare" or "relapse" or just feel like poop.  Therefore, I never volunteer for that position.  I know that at least 2 moms whisper about how "Olivia's mom never does anything for the team anymore."  When I first found out I was having kids I remember telling my friend that I "couldn't wait to be the homeroom mom" or "go to Toys R Us on Black Friday to get their toys."  So at first, when I was unable to commit, I was very bothered by it, I couldn't stand the thought that the "whisperers" thought I was a bad mom, or that Olivia's mom "wouldn't be in the school Christmas party pictures serving juice boxes" that were eventually posted on Facebook or Instagram.  However, I have since come to realize that might be a blessing.  God was saving me from myself.  If I had to hang out with the "whispering moms" making toilet paper mummies at Halloween for too long I may have started judging other moms too.  You never know someones situation and 9 times out of 10 if they could be organizing the cake walk they would.  The reality is people work, people travel and unfortunately people get sick.

The "whisperers" are the whole reason we need 100 team moms now.  It has gotten so out of control that the VOLUNTEER coaches got sick of dealing with moms and decided to give them a role.  Somehow their role kept getting bigger and bigger until it was too hard to keep up.  Especially for people like me.  I can't even tell you that I will be there for sure (although I do my best for the kiddos), but I certainly can tell you that I will not be there with 25 applesauce, juice box robots in hand?!?  Shoot, before I got sick I remember one Saturday when it was my turn to bring the snacks, I forgot.  Guess what?  If your child was on my child's team they got a bag of last years Halloween pretzels and pack of gummies that my kids didn't like so they had been in the pantry for a while.  Sorry, it's the truth.

Team moms listen up.  I sincerely thank you for what you are doing, I really do.  I would love to help you with whatever you need but you truly can not count on me.  I am not dependable, though I have the best of intentions.  Seriously, don't ask me to do anything crucial or on a time table.  However, I will always bring or send the plates, but I am not going to promise to label or bedazzle them.  Sorry, but everyone should not get a snack or certificate anyway.  Snacks and sprinkles are for winners so you only need 8 not 25.  Send your kid to the concession stand like we used to do.

Speaking of concession stands if I am there and I feel OK I will happily work the concession stand.  But, and no matter what you tell me, my kids or my husband, I am not signing up.  If I feel like crap and it's my turn in the concession stand, I refuse to send myself into a relapse over Mountain Dew and Laffy Taffy.  But I used to.  I would sign up and work when I felt bad just so people wouldn't talk about me until Todd told me it was time for me to learn to say "no".  I think he even made me practice saying it.  I did it for my kids.  I didn't want anyone talking about my kids either.  My kids are fantastic at the sports they have chosen now but the few they tried before were not their sports.  I worked lots of concession stands so people wouldn't talk and so they would think my kids were a valuable part of the team.

So, because of this stupid disease I feel like a worthless mother at times.  There is nothing more important to me than my family and I hate disappointing them or having to worry someone is talking behind their back but in front of their ears.  I may come to the Easter Egg Hunt to watch my child and that's OK.  I promise I sent eggs, I just am not able to hide them that day.  I am pretty much always on the sideline cheering for my child but I am not always able to make french fries that day.

I rarely tell my kids I don't feel well but sometimes it is necessary.  "Sorry, Olivia but I can't sign up for Santa's Workshop (which is my favorite)because I am not dependable."  This is not the way I pictured explaining the meaning of "dependable" to my daughter.  Or, when there is a "pick your time slot" rule I have to send the paper back incomplete and in her eyes they just got a bad grade.  Really, I should be the one getting a "D" for not dependable.

The word "maybe" has become a word I hate.  It's also the most truthful word I speak.  Luckily, I have a great family and an amazing set of friends.  Just last week I was supposed to have lunch with one of my best friends but woke up with a horrible headache and eye pain.  The kids had tennis that evening and it was crazy hot outside.  I knew to even have the chance at sitting through their matches, I had to cancel lunch.  My friends are always fantastic, always understanding and willing to take a rain check to an unknown date and time.  They know that could get cancelled too.

God Bless the team moms and PTA presidents!  You do a lot of work and I know it is a thankless job.  I also know the ones I've talked about in this entry are few and far between.  Most of the time you all step up and do what everyone else doesn't.   I would love to help those team moms more.  However, I won't be volunteering.  But, don't worry I can find what you need on Amazon Prime and get it to school ASAP.  Heck, I'll do the plates AND the cups.  I can even order colored ones if you feel like that is necessary.  But, it's a crap shoot if I'll be there to hand them out.