Leasing an Angel
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The Empty Battlefield

1/15/2017

19 Comments

 
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30 days and 3 hours.
30 days and 3 hours of no seizures has already put the light back in Luke's eyes. He notices things that he never has before. He interacts differently with toys, food, and people.
These seemingly small connections are being made in his brain that will undoubtably pave the path for huge gains.
2017 has been an unbelievable year for Luke. We've spent more days than not, cozy in our jammies, eating bacon and doughnuts. We have snuggled on the couch and watched Elmo when Sam has been so kind to give us a break from the Choo-Choos, sipping chocolate milk and snacking on Cheerios.
Life is calm and good and beautiful.
I am supposed to put my battle gear away and 'enjoy this time,' but there inlies the problem... I don't think I know how to do that anymore.

For the past three years, I've done nothing but fight. Fighting through pregnancy and hospitalization and insurance and surgeries and more pregnancies and divorce and regression and medications and custody and more surgery.
And now... now what.

We walked out of The wreckage as victors. We came home to a Hero's Welcome. We were shocked and scared when, a week after surgery, Luke's brain pressed pause and sent him back to an infant developmentally, while it healed. He couldn't sit or stand or use his hands. Still... We kept fighting. Then, It was like we were standing in the middle of a medieval battlefield. Blood and sweat and hair flying through the air until Jan. 1, 2017 when the fighting suddenly stop. It was as though the Army stood up, put their weapons down and just walked home. It was amazing and creepy all at the same time.
The fight, all of a sudden, was over.
So, what am I supposed to do now?
The past year has made me in to a maniac of a fighter. The busier and crazier things got, the better, sharper, tougher I became.
And now that fight is over, I don't know what to do with myself. Who am I anymore if I am no longer a fighter?
Sure... this could seem like a perfect example of Munchausen by Proxy syndrome if you look at it from a conspiratorial point of view. But that is not what I am getting at. I don't want to go back to seizures and stitches and neutropenia. I am not a sadist or masochist.
Of course, I'm not disappointed that Luke is ok. I just don't know how to be ok now in the calm.
How do you stay a hungry fighter while still having peace and faith that it will all work out? How do you know where to go and what to do when you have the luxury of options? How to you keep the fire going without any fuel?
I know I should enjoy relaxing. I know I should be grateful to have our health. And I do feel those things, but the drive, the push, the desire to do more, to be more, to have more, the desire to fight won't stop. It is who I am now.
Ya know, I used to apologize for my aggressive and loud and over-the-top self. I pushed Her down for so long, insecure that She would not and could be loved.. But last year I needed Her and She was ripped out of years of hibernation and pushed to the front line.
That person, I liked Her. I missed Her. I was proud of Her.
I finally got to be Her again. I had to.
But She missed a lot of life. She has never been a normal adult. She went from adolescence into a decade of seclusion and now she is the reason I stand here frozen, looking around, trying to figure out what the heck just happened.
She stands there in the empty battlefield, weapon still in hand but no one around.
It is quiet, but I can still hear my story, my song, my chant. The army has gone back to their families, to their lives, to their homes. They rest and heal and try remember who they were before they were a solider. They pray for peace and the mundane. But don't want to go back to that life, to who I was. I don't want to send Her away because I know that this standstill is short-lived. I know that we will never be 'normal'. First because I don't want to be and secondly, because Luke is not 'fixed'. It probably wouldn't hurt to put the sword down for a minute but it's not going in the attic. I need it handy. I will need it again. Although we may be lucky enough to not be fighting seizures, there is no surgery, no cure for TS or developmental delays or autism. It's therapy and medications and threatments and connections. The fight for our children never ends and is not a fight reserved for parents with children with special needs. It is the reason we don't spend our days eating Pizza Rolls in bed and watching The Godfather trilogy.
Yet, still I stand here, holding a sword with no opponent around. No home to return to. No arms to carry me through the door and nurse my wounds. I know I am supposed to move forward and heal but the battlefield seems like an inappropriate place to do that.
I look around this battlefield knowing that it is time to take the first step, but unsure which direction is home.
19 Comments
Fran
1/15/2017 06:08:30 pm

Home is where your heart is!

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Terri
1/15/2017 06:14:49 pm

Oh, but you are healing, brace warrior. How shallow I would be to tell you to relax and enjoy? You are doing what you need to do to navigate this time. There is no "right or wrong" way to do this thing called life. I couldn't be more proud to love you and to call you friend.

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Brenda
1/15/2017 06:15:20 pm

Look up, Sweet Friend. He is HOME.

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Kim
1/15/2017 06:25:45 pm

We are your warriors, your soldiers and we are still here. You are in our thoughts and prayers. Love you girl

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Gwen
1/15/2017 06:36:39 pm

Come by for a chat. I truly have been in your shoes. Different shoes, cf shoes, but the same style. I can't tell you how, but I can commiserate, and tell you it'll be ok. That warrior can rest for years but be ready to go in seconds. I promise.

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Katherine
1/15/2017 06:46:35 pm

Whenever you find that home of yours, let me know and I'll bring you over a much needed bottle, or 3, of wine. Even if it's just the home you find in your head.

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Joan
1/15/2017 07:06:52 pm

Steph you have been brave; you are brave. Luke is sooo much better, but whatever the future holds God is in control; He will supply your strength. So for now love that angel you lease and love his little brother. Life was not promised to be simple or easy but it is promised that Jesus holds your hand. Rest, live and love.

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Donna
1/15/2017 08:17:20 pm

Stephanie, you are an inspiration to all! For all mother's there is no 'how to' manual that comes with delivering a child, whether that child be 'easy', 'strong willed', 'special needs' or what ever label people may put on our kids. Regardless of the 'battle' as a mom we always are at the ready to pick up the fight. We never 'relax', we don't 'chill out', as much as we may want to, or need to. You may feel alone right now, but you have a team of moms who have stood where you stand. Take some solace from the quiet, from the peace. Listen and you will hear what's next for you, while you can let your battle armor collect a little dust. It's understandable that you have lost 'you' in this battle. You have dealt with more in your young life than most ever have to. Just know that it will be 'fine', whatever fine ends up looking like for you and your beautiful family. We will always be ready to head into battle for our kids, regardless of age, adversity or affliction.Keeping the candles burning here in NH for #TeamLuke.

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Beth Govoni
1/15/2017 08:34:49 pm

Well said. What to do? What you have been doing all along. Write. Your ideas, your feelings, your descriptions...stun me in how magnificently they describe your battle. And they also describe elements that all parents can relate to on some level. Praying your battles never need be so intense again, but you are right...as parents our need to do battle resurfaces from time to time. Unleashing your strongest self was a godsend for your little boy. You will find a way to make peace between the warrior and the gentle heart within. Both are needed and you are only truly you when they are both allowed to be present. Perhaps you don't actually need to move in any direction right now....perhaps standing still is it's own work. Standing still would allow both sides of you to catch up to your present moment. Praying peace isn't something you need to wait for long.

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Patty smith steph,s mom
1/15/2017 08:57:26 pm

Beth thank you! Beautifully put,

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Mary pat boone
1/15/2017 09:38:03 pm

Stephanie, you are amazing person. You are beautiful and a very talented writer but you need to find yourself again. Stop and smell the roses. When you go through what you have been through you keep waiting for the other shoe to drop. I was there many mons ago and it is hard to verbalized at least for me it was and I like you was surrounded by wonderful friends and family. Your battle wounds are still fresh and you don't have that crystal ball that tells you your sons future. I pray that you and your family's future is bright. Keep writing it is one of your best weapons. Peace and love sweetie

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Vanessa
1/16/2017 04:23:50 am

Listen lady, you did it. And you'll always be a soldier. All moms are, you've just used your weapons more than most. Now. . . You're gonna have to continue to live in the present. The new present. It's hard to adjuat, but it's kinda not hard too. NO past, no future, JUST now.
It's time to smile more. Get some brand new red lipstick and smile all day long. That's your baby step. And therapy is awesome, especially when you've got a little PTSD from the wars, and it's a real possibility for you. Your new normal can gradually morph from a battlefield to a sweet spot. Where there's no panic or gloom, just mostly acceptance and awe. I'm sending you air, helping you breathe. Love ♡

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Margie
1/16/2017 04:51:24 am

Sweet Stephanie... I've never walked in your shoes... I certainly don't hope to... but I pray, if I needed to, I'd have the same instincts you've had throughout this battle. I have a close friend whose son has SMA type 1. She has battled as you have, for 14 years... instant highs... instant lows... often in the same moment. Whenever I hear the song... by .Group 1 Crew... I think of you and Amy. "He said, I won't give you more, more than you can take... I might let you bend but I won't let you break." I'm certain occasionally you've wondered if you were going to break. You are amazing and Luke is so very blessed to have his very own leased angel. I feel the only thing I am able to do for you is pray... and I will surely continue to do that.

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Rosie
1/16/2017 04:52:02 am

It's all part of the process called healing. You are where you're supposed to be... the right timing, the right space.
Just breathe.. and Embrace it....

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Byrds
1/16/2017 05:40:29 am

Your army is always here for you! Keep your writing! Keep expressing yourself! It helps US, too!! For reals!
Much love!!!

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Karen King
1/16/2017 09:46:14 am

Stephanie,
Blessings to you! I'm so proud of your honesty and ability to share your feelings through your writings. May 2017 be a great NEW year!

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Susan Miller
1/16/2017 03:55:39 pm

Stephanie,

Your uncertainties are a very normal way to feel after a battle like you have experienced. One thing that strikes me is that you have an incredible gift of communication with others. Maybe you could help other people who are and will go through similar challenges as you have. Maybe you should consider continuing your blog, writing a book or starting a support organization. There are many options where you could use the voice you have developed to help others and make connections that might be of help to you in the future. You definitely have a considerable amount of reflection, advice and encouragement to give others. I understand your need to stay operative at a high level but don't forget to be kind to yourself also. God bless Luke,you and all your family.

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Taylor Mitchell Macdonald link
1/17/2017 04:11:01 pm

Just wanted to leave a message that I also have tuberous sclerosis although i have a mild case I still struggle with everyday life had a grandma seizure when I was three years old had toumor removed and fluid as well have had three shunts removed do to them malfunctioning. But other than that I've been very fortunate. Never thought anyone would understand how life is with this disease until now

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Marypat boone
1/23/2017 10:46:48 pm

Taylor Mitchell macdonald is my daughters boyfriend and one of our families greatest blessings. We all love him to the moon and back. I pray Luke will be the blessing to someone down the road like Taylor is to us

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    Mother of two amazing little boys, one who just happens to be a TS warrior. 

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