Butterflies and Bees
I have woken up every morning for the past week with the theme song from 'Rocky" blasting in my head. All day, as I walk the halls of Mt. Tabor Elementary, as I put the dishes in the dishwasher, as I work on homework, it feels like I am in a constant roll of opening credits. It's a movie about a mom just trying to get by, doing her best for her two boys, preparing for a second brain surgery for the oldest.
Its a long opening theme song.
Pretty generic, I know. I wish I had a better song palate and chose something way more hip or complex. Something that communicated my tender side, my deep side, my theoretical side.
Truth is, right now, I don't have those sides.
All I have going on is Rocky.
All I can feel is the fight.
All I can do is go-go-go.
I don't know why Rocky though. Its not really a secret, I'm not much of an athlete. I have pretty much sworn off exercise until my pants don't fit anymore.
But there are some people (You know who you are... weirdos) that need it. When other people have too much to drink, they eat a cheeseburger and go to sleep. You guys, you all go to hot Bikram yoga to sweat it out. When other people get overwhelmed, they crawl in bed and binge watch 'New Girl'. You all, you weirdos, go for a run to 'clear your mind'. You don't lift and jump and bend just to get in a bathing suit, you all even do these ludicrous activities outside when its cold!
You do it because you like it.
Because you need it.
Because even when you hate it, you know you are better for it.
So, I mean, I kiiiiinda get the hype. Don't get me wrong, I haven't worn yoga pants for anything but Target runs in 12 years, but I get the whole pain and gain thing. I get the blood, sweat, and tears. I get pushing it to the limits and then going just a little farther.
This year has been a year of rigorous exercises of the mind and soul. Maybe it is a marathon or maybe it is bodybuilding, I am not sure which analogy makes more sense yet. (Leaning towards bodybuilding with my affinity towards self-tanning.) Nevertheless, this year has been a year of intense training and growing and stretching and pushing.
It has been such a difficult and heartbreaking year watching Luke regress and suffer.
It has been such a rewarding year because I can feel the results of the work that has been put in starting to pay off. I can feel our momentum starting to build.
BUT. Do not get it twisted. This is not a beautiful closure to 2016. I am not going to tie it in a nice little bow for you and fade into the sunset.
I am not in a great place presently.
I am tired. I am hard. I am cold.
I am so over preparing and training. I am tired of the same workout. I am tired of the same schedule. I am tired of the same challenges. I am over it.
I am so ready to put this year in to action. I am ready to get this show on the road.
It is time to take all these lessons and heartaches and hurdles and go DO.
I'm not an idiot either. I know that this fight isn't the end of my training schedule. I know that this surgery isn't going to cure Luke. Luke has Tuberous Sclerosis. It is a genetic disease. He has other tubers. The seizures will come back.
So the training schedule may change, but it never goes away.
We don't get to stop working out. Just like those nuts on the treadmill. They aren't finished when they get to a size 2. Its never over. Their routine never gets easy.
"Once they are potty trained, our lives will be so much easier."
"Once I stop breastfeeding, life will be so much better." (That one is actually true... i know, I am a jerk).
"Once they can talk, they will be much better behaved."
And then it happens, they eat, talk, pee, (if you are lucky) and you wait for the relief... it doesn't come because all of a sudden life is tough again for a completely different reason. A new challenge presents itself.
We are never done. It is never over. The routine never gets easy. It just changes.
"Done" isn't an actual thing that you get to be.
"It's always something..."
Yeah, stoooopid, thank goodness it is always something. All that means is you are lucky enough to get to keep breathing and loving and fighting and growing.
Results are wonderful. They are stepping stones to new adventures (corny) or challenges. But they are like the Olympic games. They are exciting and inspiring and moving and special. I love an overly necessary celebration as much as the next guy, but lets give a nod to Tuesday, shall we? Let's throw some respect to the sleepless nights and fevers and medicine changes and emails and blood tests and stitches and therapy. You got to do the work because you love it. You have to love the process, even Tuesdays. The process is where we spent 99% of our life.
But my 1% is coming rapidly. Next week we get to do something with the momentum of this year. I am ready for December 8 when we will get another 72 hour EEG reading to confirm Luke's seizures are still coming from one tuber. I am ready for December 13 when we have laser surgery to remove that S.O.B/ tuber from my 3 years old's head. I am ready for 2017 when we will find a home and start preschool and see what Luke's TS will look like without that nasty tuber jacking everything up.
But mostly, I am ready for today..
We are promised nothing. We are owed nothing. Every day we are here is a gift (so corny) even the ones that knock you to the ground. That is why I plan on rolling in to Houston in a gray sweat shirt/ swaet pant combo and a black toboggan. You can knock us down. Shoot, you can knock us out. But we don't stay down for long. We are champions of the everyday.
Ain't nothing wrong with going down. It's staying down that's wrong.
12/4/2016 07:42:13 pm
Nothing can keep you down for long, Rocky! You are a champion! I love you!
12/5/2016 02:55:01 am
Stay strong! In my prayers n thoughts
12/5/2016 04:49:57 am
I saw your Mom in Kohls and she gave me a little update. You have been in my thoughts so often. Praying for little Luke and your family- thanks for sharing your story (and I love Rocky movies!)
12/5/2016 05:16:41 am
Rocky, I hope you can feel the love, prayers, hugs and inspiration so many people are giving you, even though you may never see them or talk with them. You, Stephanie are an angel on earth and that must be an extremely heavy load to carry. God never gives us more than we can handle, but he surely pushes the limits. You are my inspiration. I will continue to pray for you and Luke and that you always have no less than that 1% to keep your butt moving. May your percentages move up each day.
12/5/2016 07:22:48 am
Steph, you remind us of the everyday champion we are all called to be. Thank you! God is with you in this. Love you
12/5/2016 11:17:28 am
You go, Champ! Love, hugs and prayers. Your team has this!
12/5/2016 04:20:35 pm
Love you guys! Keep fighting!
12/5/2016 04:32:50 pm
Love u Rocky! You are my hero.You have made me see things in a different way. So thank u for that. Wishing u lots of prayers and hugs ur way
12/5/2016 06:55:18 pm
Little Man, hopefully your next visit to Houston will be a great one for you Luke! God Bless!
Mary pat boone
12/5/2016 06:59:59 pm
I get goose bumps every time I see your blog come up. You and your family are champions. Prayers and love are being sent to you all . Great picture
12/6/2016 06:09:00 am
Stephanie you continue to amaze me & remain in my prayers! Godspeed❤️
12/6/2016 09:34:16 am
We continue to pray for you guys every single day! Love you!
12/6/2016 02:52:35 pm
Stephanie, you are amazing! You and Luke are in my prayers!
12/6/2016 03:16:19 pm
Stephanie you are my hero, praying all goes well.
12/8/2016 04:26:14 pm
Prayers all of the time. You all are warriors!
12/8/2016 06:40:03 pm
You are a CHAMPION! Keep that fight going for Luke. Mount Table is behind and beside you! Love and prayers lifting you.
12/8/2016 07:00:58 pm
Stay strong Ms Rocky. Prayers are being lifted today as every day. May you all be blessed and find courage and peace.
12/9/2016 11:00:16 am
Eye of the tiger, baby!
3/22/2020 11:01:42 pm
As much as we can, we need to be there for our children. I know that life is precious and we should never waste any second of it. That's why we should spend it with the people who matter to us; who mean the world to us. I have heard a lot of stories about your children. As a parent, I can say that you are doing a good job, and you must keep doing the right thing! You are serving as a good parent for them.
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Mother of two amazing little boys, one who just happens to be a TS warrior.