Still looking for my favorite hat

As a stay at home mom I have had people ask me if it is hard to get 4 kids up and out the door every morning.  I first remind them that I also have a husband and then I explain to them that thanks to NMO our mornings have changed a little.  

At 6:07 am my alarm goes off during the week.  Yes, it's 6:07 that is not a typo, I am weird and I have always been weird.  So I put on my slippers and my hotel front desk clerk hat and go to wake everyone.  I go to each childs room one at a time and wake them up.  I am pretty gentle as I walk over and tap each one of our little blessings and sweetly tell them, "Good Morning."  They all wake with smiles and tell me "Good Morning" back.  I usually go downstairs and start making homemade biscuits, pancakes or bacon and eggs whichever they prefer.  I pack their lunches with fresh fruits and vegetables and cut their club sandwiches into hearts or stars, kiss them on their forehead, and send them off to learn.  I really do think Carol Brady would be proud.

That is so funny! I read it out loud just so I could hear how lovely it sounds!

Here is our morning reality, at 6:07 am my alarm goes off and I hit snooze.  It goes off again at 6:14 am and I think I growl and get out of bed slowly, very slowly.  I would love to say I run to the bathroom because the urge is so strong, but we all know that does not happen.  Every child has a specific way they like to be awakened.  Yes, it is perfectly fine to think they are spoiled, they are.  Feet tingling I shuffle to Jack's room first to wake him.   Jack needs to be told to get up sometimes several times but I do it until he answers, once he answers I know he is up and I can move on.  My next stop is Sophi's room.  Sophi is not a morning person.  She has "requested" that I turn on her TV and do not turn off her fan.  Most importantly though I have been told "no lights" because the light in the morning causes her to have a headache.   

Moving on I head towards Barrett and Olivia's room.  They share the bonus room luckily, it is large because they are definitely two different and unique kids. By the way, I am still moving slowly and my dry eyes are still trying to focus.  On a side note, I also have Sjogren's Syndrome, but I will save that for later.  I know the suspense is rough consider it a cliffhanger.   Barrett is actually happy in the morning, honestly she's happy most of the time.  Barrett likes you to touch her arm or back and wake her.  It takes a minute but it works.  She usually sits up and hugs me.  Olivia is a whole different story.  She likes for one certain light to be turned on. I feel sure that she thinks if I hit the wrong switch then the punishment is jail time. This light is serious business.  After all this chaotic nonsense I head downstairs to prepare a gourmet breakfast of toast and/or Pop Tarts, just like a bakery.  Usually on my way down I make one last check to be sure Sophi is up.  

Are you now asking yourself, "where is that amazing husband you always talk about?"  Well Sophi gets her love of mornings from him but by this time he is in the shower and getting ready for work.  He has 2 jobs, Bus Driver and Sales Representative.  None of our kids are in district so there is no yellow bus for us, Bus Driver Todd to the rescue.  Only under "emergency" situations do I put on my Bus Driver hat and take the kids to school.  Thanks to NMO I don't always trust my eye (remember that crazy left eye) my feet are pretty much always tingling now and waking up and moving take me a while.  Oh that and this stupid catheter, however I am getting pretty good at it.  But, don't worry I still do not have plans to make a tutorial video or anything.  Long story short, on my days to take them I get up an hour earlier so I make sure I am wide awake and good to go. 

By now I am downstairs and I change into my short order cook hat.  Ok folks, put on your glasses and get ready because I am about to blow your mind with my skills....

Each kid eats and drinks something different.  I plug in the toaster and get to work.  Sophi is a cinnamon toast girl with cinnamon butter.  I could actually toast that with Jack's "Wild Berry" Pop Tarts because they like the same toaster setting.  But, I can't.  Jack is usually the first one down in the morning and Sophi is usually the last so her food would get cold.  Barrett barely likes her "Strawberry" Pop Tarts toasted she just prefers them "warm."  This is where I put my masters degree to work because the toaster is already hot (Wild Berry, remember?) and Barrett will be next down so I throw hers in for mere seconds and tell her "Bon Appetit."  Olivia lives on the edge, she likes to mix it up so either her "Chocolate  Fudge" or "S'mores" Pop Tart will be next and she is just a regular toasted kind of girl.  Finally, Sophi's cinnamon toast gets its turn.  I know what you are thinking where are their amazing gourmet café style drinks?

Without further ado, the drinks!  Jack likes 2% white milk, Barrett prefers chocolate milk, Olivia has had some lactose issues lately so gets Lactaid and Sophi doesn't like milk in the morning so it is OJ  on hot mornings and tea on the cold ones.  At this point I am so thankful I have a meteorologist hat to put on now.  

During all the toasting I'm packing 4 lunches unless it's Spaghetti day, then I only have to pack 1.  Jack has never eaten a school lunch by choice (once or twice he has forgotten to grab his lunch off the counter and had to just suck it up.)  It never fails on the mornings when we are off of our game and running late it is "Beefy Nacho" day and I can't even get them to consider a tray.  I would like to honor Smuckers with a moment of silence for inventing "Uncrustables."  As I am sure you have guessed by now each kid likes different items in their lunch but luckily they all like Uncrustables, PTL!!!  They aren't cheap though so for about a week last year I tried to make my own, that was not popular.

Some of the kids take medicine in the morning so I also wear a nurse's hat.  As I am sure you are aware I also take quite a bit of medicine.  I do much better if it is at a certain time of day.  I try really hard not to let the kids see my NMO, so I do my best to take those before the kids come downstairs.  

Once all of the kitchen stuff is done, I am exhausted.  It is so hot right now I am extra tired and hurt a little more too.  Of course with 4 kids someone usually has unkind word for someone else.  Between that and how tired I am this will push my patience but I hate for them to go to school upset so I put on my peace keeping referee hat and send them out the door.  

My reward every morning after the craziness is my recliner and DVR'd shows.  As I have mentioned before I don't like to miss any trips with the Busby's.  Wednesdays are my favorite mornings because I watch Dance Moms from the night before and feel better about my parenting skills. 

However, the reward I want most after the morning hustle is to be able to go for a walk with a friend, play tennis with my dad or jump in shower in anticipation of meeting a friend for lunch.  Unless I have a Dr appointment or an infusion I usually sit for at least an hour.  Sometimes I am so tired I even fall asleep.  I feel so lazy when I do that.  If I listen to my mind in the quiet sometimes I get so down about my laziness I have a tearful pity party.  So my hat changes to "patient."  I really hope I get to burn that hat one day soon.  Until that day though I just keep fighting and looking for more hats in my closet to help me on my journey.

Sweat down my back, sand in my crack

It's one of my favorite weeks of the year and it started with a fun new game.  I think I will call this new game, "What's in the Water?" Earlier this week I was watching the waves in the ocean and all the kids playing in the sand (none of which belonged to me, thanks Dad) when I saw something that concerned me.  I jumped up and headed towards the water while adjusting my hat and sunglasses to make sure I had a great view.  I was sure I looked like one of those Baywatch lifeguards moving quickly towards the water.  The only difference was instead of my chest and tight little booty bouncing, I was dragging my leg a little and covering my left eye looking more like a peg leg pirate than a Baywatch babe.  I was already visualizing the headline in tomorrow's "Island Packet"  which would be big and bold reading, "WV woman saves swimmers from a Great White."  As I could feel the word "SHARK" beginning to curl up on my lips and I took a deep breath so I could shout extra loud and then I realized what I should have truly been shouting was "STICK!"  That's right folks, I almost saved all the beach goers on Hilton Head Island from a stick.  I know my mom was so proud.

Like I said, it is pretty much my favorite week of the year.  It's just me and momma, two beach chairs by the water and bright ray of sunshine.  But, I have to say that sunshine is also my enemy.  The heat is x1000 for me.  I need to be in or near the water because being hot means I hurt and my vision gets really blurry especially on the left side.  So while it is a stress free trip (again, thanks dad), my body is in full stress mode.  Electric shocks and tingles are my theme for the week.

The heat sucks but I love a good tan.  As a very wise woman once told me, "tan fat looks better than white fat."  Also, I wouldn't miss a week with my mom for the world.  I hope one day my kids want to go somewhere with just me (but maybe 1 kid at a time.)  My dad told me long time ago, "be nice to your mom one day she will be your best friend."  He was right.  Even though she drives me nuts sometimes (I am sure it's mutual), she is also my greatest ally.

My amazing dad has offered for the past several years to keep my kids so my mom and I could spend some quality time together and I am forever grateful.  For all of those saying, "Where is her husband?"  He is working and can't get the kids back and forth to all their activities and we would hate for their social life to suffer.  Luckily, my dad is awesome enough to do all that running too!

The trip this year was a little different than the past several.  Unfortunately, I now have a little bit of a hard time sitting in the car for hours on end, my body and my head start to really hurt and then I get anxious.  So this year Todd suggested we fly.  PTL it was great!  My bag definitely looked different this time too.  Inside my bag was another bag full of medicine, a hand mirror and a box of catheters.   I'm not going to lie, I think even though I might have been a little embarrassed if the TSA agent would have picked my bag for screening I would have laughed.  Especially if they wanted to know about those particular items.  But no worries, I would have answered politely and offered to let them try the catheters out if they needed to.

Because I get so hot and begin to hurt, we can't spend all day out there by that amazing ocean.  It's a double edged sword for me now, the heat makes me more tired than normal but I don't want to make mom not enjoy the ocean.  Of course she never complains and we still have a great time, but I do feel terrible about asking her to leave the beach and sometimes push myself too far.  The early leave time has led to our new little ritual.  We are in our PJ's by 7pm ready to watch a movie on cable.  I even put in new contacts for this week.  It is very important I have fresh eyes.  It isn't every day you get to save someone from sticks and watch a movie from the early 2000's.  Obviously, the new contacts make it an even better experience!

I try to make it as long as I can by the water.  No matter what my what my mom says, she loves the ocean!  I love to look at the ocean but I do not like to get in it.  Especially when I can't see through it. Today was HOT!  I was miserable and sweating so bad that my sweaty back changed the color of my chair from light blue to dark blue.  I contemplated sitting in the ocean but I for one do not enjoy the sand in my crack!  So on days like today I do the best I can.  Today, I unfortunately had to cry "Uncle" and bribe mom with a "beverage" at the pool. Today I just couldn't do it and I knew I better listen to my body.  My mom never complains or asks for "five more minutes."  As a matter of fact she even acted like going back to her condo, putting on PJ's and ordering pizza was the best idea I'd ever had.   She always understands and never complains but I hate it.  I hate it for her and next time I'll hate it for whoever I am with.  I do not want this disease to affect my family and I do not want it to define me.  It isn't fair though because NMO affects everyone and while it may not be affecting them physically it does emotionally.  Basically what I am saying is, "NMO sucks!"  Actually I'm shouting it to anyone who will listen and I am shouting louder than I was prepared to shout, "Shark/Stick!"

Until it is completely impossible for me to come to Hilton Head with my family I will continue to come.  I hope I always get this "week with momma."  She is amazing, smart and fun.  When I grow up I want to be just like her.