Where is Candyland?

You know that feeling when your body says, "Stop moving, lay down, put your feet up, relax, and find a TV show you like," so that is what you do.  But first you put on your most comfortable pj's and grab your favorite snack, and then, YOU WAKE UP!!!  I mean who lives like that?  If you do why are your reading this?  Go! Enjoy your paradise and please invite me over.

I know everyone is tired by the time evening rolls around, especially parents.  The problem for me is I'm tired like that by noon, sometimes 2 pm on a good day.  I have always said the greatest gift God could ever give me was making me a mom.  Our kids are great, they are kind, caring, smart, talented and full of personality.  But lets be real they are also demanding, messy, smart mouthed and full of energy.

Last weekend, I was watching Wimbledon.  I was so excited because Serena (I will just call her Serena because I figure we'd be BFF if we ever really met) was going for her 24th major title, 24!!!!  I just want to get the laundry done?!?

Unfortunately, I've had to stop doing lot of things I love because this stupid disease has wiped me out.  One of those things is tennis.  I love tennis, and believe it or not I was pretty darn good, or so my mom tells me anyway.  I even played in college.  Luckily, my kids play and are getting pretty good at it.  I love that they love it but I hate that I can't really play with them anymore.  I can feed them tennis balls and offer advice (which they love), but it's not the same.  I'll be honest, they have watched old videos of me hitting and my kids have pointed out that taking advice from someone in a Bart Simpson "Eat my shorts" t-shirt is a little sketchy.  But I will tell you they will never beat me...EVER!  I will walk off the the court if it happens to get close to that point with an excuse like, "I have to get my click list so you can eat."  But, I am tired and can't move so they should beat me, maybe I'll just blame NMO.

I recently had a doctors appointment and we discussed how tired I am.  Of course, "there is a drug for that."  So I am now taking Ritalin.  Hopefully, it will work.  I know it definitely gives me an energy burst because after I take it I do not shut up!  I get on my own nerves.  I feel like I need to put a sticker on my shirt that says, "Beware just took medicine and could make your ears bleed!"  The other bad part about this is that I don't really have a filter.  I'm going to tell you the truth so don't ask me anything you don't truly want to know my opinion about.  Things like, "isn't my child adorable?" or "do I look too old to wear this?" are completely a bad idea if you don't want my real answer.  Now, if your child just signed a modeling contract or you recently got invited to a sorority party because someone thought you were a possible rush candidate then you are safe, otherwise forget it.

Back to being tired, scratch that, completely exhausted.  I truly look forward to getting home, or quitting time (I work for my children) and going home, showering and putting on my pj's.  Honestly, it is amazing!  Everyone in my house knows that once I get my pj's on and my bra off (seriously, it is the best) don't ask me to go outside the house, I am not doing it.  As amazing as that sounds it worries me too.  Like I have said before, I'm not worried for myself, I'm worried for my family.  So it's an evil cycle... I'm tired, I worry about disease progression then I give in to being tired and I get comfortable, so I worry about my family.

As much as I love to sit and put my feet up and increase my medical knowledge by studying "Greys Anatomy and Chicago Med" it gets quiet in my head.  A quiet, tired brain allows your mind to obsess and talk to you.  Don't worry it's not telling me to harm myself.  It's telling me things like, "I hope my kids don't think all I do is lay in bed with a headache and a heating pad on my neck."  Or, "poor Todd he works so hard all day to provide for us, I know he is hungry but I'm exhausted.  I wonder if he'd be OK with Outback delivery?"

I am honest with my kids and will answer any question they have about about my disease but I try not to tell them about all my hurts, but Todd knows every ache and pain.  I've written it before and you will read it time and time again but he is my rock, my happy place, my safe place.  You know that stupid girl in high school who thinks their boyfriend is so fantastic and looks at him with hearts in her eyes? That is me when I look at him.  We went on our first date when I was 20 and I really did fall in love with him that night.  Like a lot of other young couples, we just couldn't get it right and eventually went our separate ways, met others, had amazing kids and then God led us back together.  Nope, not an affair, this isn't a soap opera.  I very much believe in God.  I know He has given me lots of blessings but my kids, Todd, and my parents are my greatest blessings!

Back to Todd knowing all my aches and pains.  I feel like it hurts him emotionally as much as it hurts me physically.  I have asked him more than once if he wants out?  I tell him I wouldn't blame him he doesn't deserve this.  I know I don't deserve him.  He rubs my feet, listens to me obsess,  and looks for ways to beat NMO.  He actually researches.  He looks for new medications, new therapies, new treatments, anything and everything that could help me. This sounds so childish but when he is gone sometimes I panic inside.  He is my calm.  I know watching me laying in bed being completely wiped out by 5PM is not what he thought I would be as a wife.

My tiredness affects my kids too. We have teenagers now and while they don't hang out with us as much anymore, they still see it.  My son, Jack, is exactly like me.  He worries about everything and he also thinks he has to take care of me.  Even though he's playing a video game he still pops his head in my room from time to time and asks if I'm OK or if I need anything.  He is 100% a mommas boy and doesn't go far from me.  If Todd isn't here he makes sure I know he is here and in the next room.

Barrett (Jack's twin) is my loving, tender hearted child.  She takes on a mom role with me.  She comes in my room armed with a "box of fun" and wants to fix my hair and paint my toes.  She puts pillows in her lap and tells me to lay down and brushes and braids my hair while my freshly painted toes dry.

Sophi, my "bonus" child is my teen age step daughter.  By the way, "step" is a stupid title.  I prefer "bonus" as a title.  "Bonus" is a word with no negative connotation and perfectly describes how I feel God blessed me, he gave me a "bonus."  If you are counting that is 3 teenagers! Yikes! Not really though.  Even though they make me insane sometimes, they are great kids!  Sophi is a star basketball player and very competitive.  We actually have a lot in common.  No, I do not think I am a star basketball player (insert eye roll) I just mean we "get" each other.  Sometimes she will come and sit in bed with me and talk for hours.  On a side note, she is also working on getting her MD from Grey's Anatomy too.  We frequently watch old episodes and discuss what we think they should or shouldn't have done.

Then there is my baby, Olivia.  She is 10 now and really not a baby anymore but she still eats up the baby role as often as she can.  I tell everyone she is the "star of her own show" and no truer words have been said.  Her view of my tiredness is a little different than everyone else though.  Instead of worrying about me being so tired I think she enjoys my evening tiredness because I am a very captive audience for her.  I've often said I should have named her, "Mom Watch Me."  I've seen a lot of Olivia shows in the open space of my bedroom.  She definitely makes me laugh and smile.  Right now she is obsessed with UNO.  But here is our issue, I am very competitive so she has to earn her win.  I am not that parent who lets their kids win, I like to win!  Olivia likes to win too.  She gets mad when she doesn't win and then I hear, "that one didn't count" or "it's first one to five."  She is smart too because when I say no more she will say something like, "what else do you have to do?"  She knows I'm not going to say, "I'm tired" or anything to that effect, so we play again, and again, and again, and again.  At least it's not Candyland anymore.  At one point we played it so much I think I had the spaces on the board memorized.  Unfortunately, we lost that game.  I just don't know where it is (insert evil laugh.)

So you see even when I am so tired and I think I am going to drop, thanks to NMO sucking the life out of me, my family finds a way to rally around me.  They make me feel needed and loved from research articles to card games.  And, while I'm still exhausted and laying in bed or kicked up in a recliner I still win, we still win.  NMO will not break me, it will not break us!  Everyday it will continue to try.  I know new obstacles are coming and that evil monster will not go away.  But, thanks to my family, the family I know I don't deserve, we will take whatever it throws at us and we will beat it!