Browsing Category: Family Life

Scars are Beautiful

A few weeks ago, our small group at church was discussing transparency with others and being vulnerable and sharing the “real you”. I believe the question was asked, “Who here struggles with being vulnerable?”

Reverting back to my middle school days, I quickly avoided eye contact with anyone else in the room (dang circle-style seating) and studiously examined the carpet pattern.

Heck no I am not going to raise my hand. The question was “Do you have problems being vulnerable?” Duh. The last thing I am going to do is raise my hand and say “Yes!” enthusiastically.

(Please note, the teaching in our small group is excellent and we have many people who are braver than me to step up and acknowledge the hard truths about themselves.)

Vulnerability is hard. Fluff and rainbows and unicorns are much easier than diving into the difficult areas of our lives.

However, I am quite vulnerable and open about the fact that in two months, I hit the big 4-0. Getting older is not something I fear or shy away from but rather eagerly embrace. Sure I keep investing in under-eye cream and bread is a distant memory of my past because although 20 year old me could consume a cheeseburger post-work-out, the almost 40 year old version of me can merely look at bread and my hips widen just a bit more. Despite those things it feels amazing to have been around for four decades, with hopefully more lurking in the my future.

40 has also brought just a touch of wisdom (A touch, mind you), a breath of confidence, and a spirit of bravery. Remember how I said I hated being vulnerable to others? I do prefer presenting a happy side of life, that things are all sunshine and cute puppies  and everything is FINE. Part of that stems from being a naturally optimistic person. Part of that stems from not wanting people to truly see the hidden parts. Yet 40 is showing me that opening myself up to others is okay.

One goal I set as I approached 40 was to complete a half-marathon. This is no way a unique “Hey! I am almost 40!” goal. Just search Pinterest and you will see that me and every other Suburban mom addicted to Starbucks have all had the same idea. The slight difference is the fact that a half-marathon is not simply completing 13.1 miles to me.

The half-marathon is a statement to myself that I can tackle the hard stuff in life.

As some of you readers know, I was born with a condition called Spastic Diplegia. Three years ago, I underwent a surgery to help with some of the symptoms of this condition. The way Spastic Diplegia works is that the brain sends faulty messages to nerves that control muscles. These nerves tell the muscles to contract 24/7, rather than only contract when in use. Imagine walking around with consistently tight rubber band muscles. SDR (the surgery I had three years ago) is an operation in which those nerves sending the faulty message are cut so they can no longer tell the muscles to stay tight.

After 36 years of having really tight leg muscles, I no longer walk around with rubber band legs (my term…obviously not one used by the medical community. However, they are free to trademark it if desired.)

Recovery was long after that surgery (I had a second surgery three months later that really took a long time to bounce back from) but now I feel like I am in the best shape of my life. There is a catch to all of this: The 36 years spent with tight muscles wrecked some havoc on my body. A few months ago, the husband and I were discussing all of this and he asked, “How often do your legs/feet hurt?”

My response, “Every step.”

He lives with me and he had no idea. (He knew there were aches and pains, good days and worse days.) The reality is that 36 years of tight muscles have done a number on my feet, my ankles, my knees, my hips, and my back. I know those areas of my body are breaking down faster than they should for someone of my age and health. One of the reasons I am so diligent about working out is to keep everything moving and working. I also am aware there could come a day in which those things do not work anymore and my life could look different than it does today.

And that is okay.

It is hard for me to be vulnerable and put this out there. In fact, normally I would not even mention chronic pain to others. Remember that marathon? There is another goal attached to it. I also want to raise money for an important organization that is close to my heart. The OM Foundation is a non-profit organization started by Bonner Paddock, a fellow individual dealing with CP. He has recently devoted his life to speaking and to raising money and awareness for children with CP who need therapies and medical interventions to ensure they have a good quality of life.

Although I deal with daily pain, I also know things could be worse. The deal with Spastic Diplegia and CP is that cases can be significantly different. CP is caused by brain trauma either in the womb, at birth, or in the first year of life (Please know I am not a doctor and merely use Google for all medical diagnosing purposes). Most likely I did not receive enough oxygen while being born, thus the trauma to my brain (and the nerves sending the faulty signals.). I have a slight disability, one that many people who encounter me daily do not even notice. Yet there are others who are left unable to walk, whose upper body is affected, who cannot speak, or who may also experience some cognitive difficulties as well. Aches and pains are nothing compared to how hard those individuals work every day. I have met many families whose children live life with complicated forms of CP. Their kids are always happy. They are brave and courageous even though they fight their body every moment of the day.

I have met adults who plow through life with joy and gusto, despite the toll CP takes on them.

It is for these individuals that I run. Because I can. I may not be fast. I may not be the most graceful runner. And I may walk at times. But right now I can run and I can do so for all those children who currently cannot.

For so long the scars on my body of years and years of surgeries (there were many during my childhood) were signs of defeat to me, signs that something was wrong while everyone else was walking around being just fine. Scars made me vulnerable and seemed to scream that something was wrong. Remember how I said being almost 40 brings about some wisdom? Well I can now realize that we all have scars. Some visible. Others hidden on the inside. I can see that the scars up and down the backs of my legs and the large one on my back are beautiful. They show resilience. They show strength. They show that I can do hard things, even if what I do looks different than the norm.

Here is where you come in to all of this, dear reader. No, you do not have to run along side me in two weeks. Rather I would love it if you would donate money in my name to the OM Foundation. Read their story and see the ripple one person is trying to make in the lives of children. Click HERE and check out my fund-raising website. I would be honored with any donation you are able to give.

March 5, 2017 is the big day. The calendar on my fridge is full of the miles already run in anticipation of this day. I currently have three outfits picked and ready to be worn, depending on the weather (Because if one is gonna run 13.1 miles, one should at least attempt to look cute). The list of what to pack sits next to me at my desk.

It should be a great day. Not because it will be easy or because of the medal and t-shirt given at the end.

Rather it will be a great day because I proved to myself that I control my story. I can be vulnerable and show those scars to others, knowing they do not think twice about such things.

And together we can all make a difference in the lives of children, showing them their lives have purpose and beauty regardless of a medical title placed over them.

 

Daily Truths

What’s wrong?”

Why are you still in bed? Are you sick? Did the gym close? Is there snow on the ground?”

These are the questions I am peppered with if my children happen to stumble across me still in bed at six o’clock in the morning.

(I know…we are a “special” kind of family in which everyone in our house is typically awake by 6am. Bless us all.)

Their daily reality is that mama is up early and typically at the gym when they rise. I do not do this because I have some sort of sick personality that likes to be tortured in the wee hours of the morn.

Nope. I do this because I know what simple rituals make a day better for me.

In my case, I really need to be the first one up.

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Blame this on my introverted personality, but I do not want to talk to anyone or see anyone when I get up in the morning. I relish the quiet and stillness of our home in the early morning. It allows me to deal with the chatter and business of the day later on as the house becomes alive again.

Early morning rising while everyone else snoozes is a daily truth for me.

Daily truths are things that I know to be true that make a day better for myself.

They are not flashy (i.e. having someone hand deliver a cup of coffee and a NY Times best seller to my bedside every morning) and hopefully do not impose on others (my children will tell you there are days when it is *painful* to wait until that clock reads 6:00 am to jump out of bed and start talking).

Rather daily truths are the things I recognize that need to happen (fingers crossed) to feel like I can take on the day.

That sounds rather dramatic, considering I lead a lifestyle in which I never fear for the nourishment or safety of my family, I do not work outside of the home, and I live on the border of one of America’s plushest suburbs. Middle class America is quite nauseating at times, is it not? Anyway, I regress.

Simple truths in our daily life allows us to see the core of ourselves. I know as a believer I live by the idea that the “joy of the Lord is my strength.” I also know that the Lord created coffee and that gives me a whole lotta strength to tackle the day.

So what are my simple daily truths?

  1. Be up before anyone else. Yep..this means I typically set an alarm on the weekends.
  2. Coffee
  3. Time spent reading in the early, quiet hours.
  4. Exercise. My body and its special circumstances requires it to keep functioning. My mind requires it to be a nice person.
  5. Greeting my family on a positive note each morning…even in those moments when #1 does not occur. I cannot feel at peace with myself if I start off grumpy with my people.
  6. Some alone time in the afternoon. We are busy and some days this really may just be ten minutes in my room with the door closed. It is necessary.
  7. Did I mention coffee?

As you contemplate your daily truths, ask yourself these questions.

How do I want to feel on a daily basis?

Be realistic. We cannot feel super excited and terribly happy all the time. That is called a “Disney World vacation” and we eventually have to return home to real life at some point where work and bills and flower bed weeds await us.  The body cannot run on full steam ahead- mode 24/7. Rather, ask if  you want to feel content? Peaceful? Calm?

What is going to get me to the point of feeling that above feeling on a regular basis?

This is where you identify your truths. This is where I start perking the coffee. How can you feel a reasonable amount of calm on a regular basis?

How can I make decisions about my daily truths based on my current situations?

This is where I set the alarm clock on a Saturday because I know I want to read in peace before my offspring shoot out of bed and start asking me what is for breakfast and do we have a plan for the day. If you know your daily truths, examine your situation and see how those can become a fairly normal reality. This is the point where you also have to be realistic with yourself. Want to know how to completely fail at daily truths? Setting the bar too high or setting expectations for yourself that are not going to happen. Be kind to yourself..that is the whole basis behind acknowledging daily truths.

 

Recognizing your daily truths means going to the extra effort to make sure life is designed to incorporate little things that make you feel good so you can be the best version of yourself.

Not the perfect version of yourself…because that simply does not exist.

Rather work on shaping a pretty darn good version of yourself through the identification of your daily truths as you serve your family and others and reflect God’s love and blessings back on his people.

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Now it is your turn: What is your daily truth? Share…because I may want to steal it ;).

 

The L Word

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I hate the treadmill.

If our ancestors knew that we pay money to walk in place on a large, loud machine they would think the world had gone to hell in a handbasket.

(I love to use that phrase. I feel like it is very 1950ish of me. Also…everyone has been saying the world is going to hell in a handbasket for a good 75 years, so the punch said phrase is meant to deliver has lost a bit of its flare. )

Despite my hatred for the treadmill, I climb on the one at my gym every morning around 5am. I select a machine situated by the TV showing the local news, pop in my headphones, cue up a playlist, and start that ol treadmill moving.

Just like the days of yore.

Except my ancestors were likely hiking up a hill to fetch the morning eggs rather than walking in place on a mindless machine.

I hate the treadmill, but I love food and being able to fit into my current wardrobe, so I walk and run every morning.

The deal with this is just a year ago I could not run. Two years ago, I could barely walk. My time spent on the treadmill always reminds me how far I have come since the days after my surgeries and I am thankful for this mindless task I can perform at the gym each morning.

Because of these surgeries, I have become part of a unique club. I was actually a member of this club my whole life and never really knew it or understood my fellow members. This unique club is comprised of individuals like me: people born with cerebral palsy and living life with the effects of a disability. Through the wonders of social media, I am part of several Facebook groups in which I get to interact with others in this club. I see videos daily of kids who are rocking life as they fight for steps or sometimes even simple movements. I have met adults who although they share a CP diagnosis, they are moving mountains and not letting a physical disability slow them down in any way.

And so daily I get on that treadmill and I walk and run for those members in this club who unfortunately cannot do the same.

Seeing these individuals on a daily basis through Facebook and through their videos has made me painfully aware of something in our culture. It is the use of the word “lame.”

I have never used the word myself because it hit just a bit too close to home.

And quite honestly it faded from popular vernacular for a bit.

However, it has found its way back into mainstream vocabulary and I find it disturbing.

Thankfully we have reached a point when the majority of society has stopped using the words “retarded” or “gay” in a derogatory manner. We are fighting to end racial slurs and prejudices. As a whole, we have come to understand that when you use a word that represents a group of people as a way to explain something as being “stupid” or bad, you are insulting said group of people.

It is mean. It is hateful. It is unnecessary.

As a culture, it is time to add a new word to this list of words sitting in degrogatory banned camp. That word is “lame,” my friends. When something or someone is lame, that means he/she cannot walk. It does not mean that he/she is stupid or dumb or undesirable.

It simply means that an individual cannot walk.

Fortunately our society has graduated past the belief that disabilities define the person, rendering those with such issues as useless to the good of the whole. This advanced mindset should also spill over when we consider using words whose correct meaning explain race or maladies as a way to denote something bad that is going on in our lives at the moment.

If you are using such words or phrases, I implore you to take a minute to think of their true meaning and then apply that to how you are using the words in your everyday speak.

Then ask yourself how you would feel if a large portion of our society began using your name in a derogatory manner.

“That is so Sarah that you forgot to set the DVR.”

“That show is soooo Sarah. I cannot stand it.”

“Stop being so Sarah. You are getting on my nerves.”

(*Apologies to all Sarahs. It was simply the first name that popped into my head. There is a reason I write nonfiction as opposed to fiction: I am horrible at developing characters’ names.)

Not so fun, is it?

I am stepping off my soapbox now and climbing back onto the treadmill. That Valentines Day candy isn’t going to burn itself off my hips.

Be blessed, friends. Put love out there and not hurtful, mindless speak.

Summer Reading Guide 2015

Something you need to know about me is that I love a good summer reading program. My kids are signed up at various programs all around our fair suburb. This is not because they need encouragement to read or because I am attempting to keep them entertained (okay…I totally am attempting to keep them entertained.) but because along with summer reading programs come summer reading program incentives. In most cases, this means coupons for free kids meals and activities (and the occasional sticky hand and random temporary tattoo).

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My kids can totally read for ten hours a week if it means they can dine free at local restaurants. Just last week, I took them to a local trampoline place for FREE with incentive coupons they had earned in a reading program. They burned off excess energy and I got some work done.

That, dear reader, is a win/win situation.

Unfortunately, very few of these reading programs have an adult version. However, our local library does have a separate program for adults that involves a weekly drawing for local gift cards. One of the first summers they did this, I racked up some major prizes.

Including a notepad that said “I like big books.”

I know you are all terribly jealous of that one.

I won so frequently that year probably because I was one out of about 10 book nerds who were actually participating in the program.

These days the adult summer reading program is quite popular and people keep beating me out for those shiny plastic gift cards and notepads alluding to random songs from the 90’s.

As I attempt to read my way through the library this summer, in hopes of having more enteries into the drawing, I thought I would share some great summer reads with all of you in case you were needing some new titles to check out in the upcoming months.

Fiction

The Nightingale. I love me some Kristen Hannah. In fact, the very first book of hers that I read touched me so much I immediately mailed it to one of my dearest friends with the disclaimer of “You must read this!” The Nightingale is the story of two French sisters during World War II. It was excellent and I made my entire family leave me alone for an entire Sunday afternoon while I finished this book.

The Girl on the Train. Everyone says “If you love Gone Girl, you will love The Girl on the Train.” I guess you could make such a statement, but you could also say, “If you love Pepper Jack Cheese, you will also love peanut butter sandwiches.” Both “The Girl on the Train” and “Gone Girl” are books with suspense. The similarities ended there for me. “The Girl on the Train” is good (not Gone Girl good) and has some plot twists that keep you turning the pages. If you like a bit of mystery and intrique, this is your book.

The Rumor. My family loves to joke about my deep love of Nantucket, especially since I have actually never visited this quaint island. Elin Hilderbrand is a favorite author of mine and reading books set on Nantucket scream summertime to me. I happen to have just finished this book last night and greatly enjoyed it. Also, I really wanted a lobster roll to eat after reading this.

And a million dollar house on the east coast.

Whatever.

 

Orphan Train. Sometimes you want a light, fun read for the hot summer months. Orphan Train is not that type of book. Looking into our nation’s history of transporting orphans from the East to the mid-west can be harsh and upsetting at times. This fictionalized depiction of actual orphan trains is a poignant and moving story.

 

The Boston Girl. This book took a few chapters to hook me, but I did really enjoy reading it. It portrays a light on what it was like to be growing up in an immigrant family in the early 1900’s and all that came along with such a title.

 

We Were Liars. I heart a good young adult fiction book and this one did not disappoint. Again, it took a while for me to feel personally involved with the characters but I finally really started to dig it around page 50 (I know this because at page 35 I told myself I was giving up at page 50 if I was still feeling bored with the narration and story line.). The writing style of this book is very unique and there are some plot twists I did not really see coming. If you like a bit of teenage angst, you will enjoy this book. This happens to be a fast read which can make it the perfect vacation book.

Necessary Lies. Often times living in suburbia, I can easily forget how other populations live or have lived in the past in our country. Necessary Lies looks at how sterilization was used on African Americans, poor, disabled, and mentally incompetent people in the 1960’s (and before) by our government…sometimes without the concent of the patient. This is a fictionalized account of a real period of time in our nation’s history.

Non-Fiction

The Life Changing Magic of Tidying Up. I bought this book months ago because my home always needs a good tidy as the school year comes to an end. In full disclosure, I have not finished this book but am loving it. I even hear Marie Kondo has YouTube videos of how to fold shirts in her logical way. If one ever peeked into my t-shirt drawers, one would realize why I purchased this book when it came out.

Living Well, Spending Less. I have read Ruth’s blog for years now and really enjoyed her book. The message is simple yet powerful as she calls readers to be content with what they have and where they are in life.

Nobody’s Cuter Than You. Big Mama was one of the first big Mommy blogs I started following ions ago when I entered the blogging world. This is her third book and is centered around her friendship with her best friend. All of her books are laugh out loud funny and leave you feeling just a bit more joyful than before you cracked the cover. If you are in need of a smile, pick up this book.

 

Along with my suggestions here are a few books that happen to be on my “Gotta Read” list for this summer.

Luckiest Girl Alive

800 Grapes

For the Love

In the Unlikely Event (because…Judy Blume!)

My Sunshine Away

Dead Wake

 

What is on your summer reading list this year?

Share with me so maybe I can read it and get ONE more entry into that drawing.

Stay tunned for what is on my kids’ summer reading lists this summer.

 

365 Days

SDR pic365 days ago I began a journey. On a Friday afternoon late last October, I woke from a four hour surgery, thirsty and begging the nurse to bring my husband back to the recovery room. (She gave me two ice chips and said my husband would have to wait to see me. She is not my favorite person ever.) As I lay there in that recovery bed, flittering between the last remnants of drug-induced sleep and consciousness, I contemplated the huge life step I had just made. I looked at the legs laid out before me. Legs that had made up so much of my story up until that point and wondered how as the composition of those legs were changed, how my story may change.

It would take a while for the changes in these legs of mine to be fully realized (and another surgery) but those changes did occur. As I fought to wake up on that Friday afternoon in October, I attempted to process what had just occurred. The road to St. Louis had been quite emotional and tedious, as we gathered the needed materials to be considered for the surgery and as we waited for the call to verify that I was indeed a candidate. When my mother entered the recovery room (and I had eaten two more nourishing ice chips) I asked her if they had actually cut the nerves because I still felt tightness in my left foot. I can remember the look she gave me as she reassured me that yes the doctors had actually done something during the four hours they spent with me in the operating room.

I can be a bit loopy when under heavy sedation and tend to force those around me into random, and slightly panic-induced, conversations.

I can also insisit on eating and drinking large amounts of food after coming out of heavy sedation, which is also never fun for those around me because such indulgences never quite settle well with my stomach.

Obviously, I am loads of fun in such circumstances.

As I have been looking back over this year as my one year SDR anniversary has been approaching, I have been filled with so much emotion. In some ways, the year has passed quickly but in other ways it has been such a long one for me. It feels like our home has revolved around “Lynley’s Recovery” (seems like that because it has. Sigh) and little else. Our calendar has been this perpetual reminder of surgery dates and PT appointments. I have grown a bit sick of myself in all of this.

So where am I now in those journey? I would say a pretty good little place. It has been long. February and March were brutal (If we are being honest, April wasn’t the best either and May was no shinny penny. ). Recovering from PERCS was significantly more challenging than we ever expected and I had to slow way down to tackle that mountain. We tried to find bright spots during those months, such as the joy in navigating the asiles of Target in the motorized cart, but those were long days and not being as mobile as I have been in the past was hard on the psyche.

The emotion that has been felt this week really centers around so many things. Gratefulness for being able to walk this journey. Exhaustion for having to walk this journey. Confusion for why this journey exisits. Learning humility in the journey when various friends and family have worked in ways to make my recovery better (I litereally did not cook one meal the entire month of November for my family.)

Many ask where I am physically at this point, typically followed by the question, “Are you fully recovered?” Honestly, I do not even know how to answer such an inquiry. Am I fully recovered? Possibly, but not really. This road is long and “being recovered” sounds like healing a broken leg and not altering a life-long physical pattern (However, I typically answer “Yes” to this question because the inquirer  is simply being thoughtful and no one appreciates a jerky response.). Physically I am good. The tightness that has been ever-present in my legs, tightness that was getting tighter as the years progressed and rapidly aging my body, is gone. It is just simply gone. There are days when that still blows my mind. People have asked about the tightness (AKA Spasticity) and what it feels like. My best way to explain it is like rubber bands are constantly holding back full range of motion. The tightness is not similar to muscle soreness from a hard workout or sitting for an extended time but rather like bands that refuse to release. As I aged, those bands continued to constrict. When I woke up on October 25, the rubber bands were simply gone.

Amazing.

Rehabing after PERCS is where all progress made at the end of last Fall came to a halt. Although the lovely pink cast (No one ever let me choose cast colors again. Pink?! Why did I not opt for black?)  was removed at the end of Febuary, I was still really struggling with mobility as late as May. There were some gray days during that time but I kept pressing forward (Thanks to the encouragement of my husband) and finally started to see the light at the end of the tunnel. Then one day I noticed I was walking faster, with much less pain, and my ankle and foot were not swollen by the end of the day. My physical therapist graduated me from PT at the end of July, a day that was celebrated more by my kids than by myself (Bless their hearts. I do not even dare add up the hours they sat in the lobby of that PT office this past year.). From that point, things continue to improve daily. Limitations that held me back in workouts in the past—whether from tightness or rehabbing my ankle— are fading away. I happily skip right past that motorized cart in Target and grab a regular buggy like everyone else.

(Side note: That motorized cart may look grand, especially on those days when you are tired and you simply want to shop all of Target’s glory in peace without worry of sloshing your Starbucks latte. Here is what one does not realize about those carts: They are big and hard to turn and make this horribly loud noise when one must back up. And despite the fact that the cart was plugged in to charge when you first started your shopping excursion, the battery can die right in the middle of the store leaving you stranded with a basket full of groceries. Also, most employees are not very gracious when you accidentally turn a corner a bit too sharp and knock over a display. )

So this journey…it has been long but it has been good.

My journey actually began before that day in October. It began at that moment when something went a bit wrong in my brain’s wiring and the signals were crossed to those muscles. I have reflected a lot during this year as to why things are they way they are in regards to my diagnosis. For me, the reason behind why I have spastic muscles remains a mystery. We do not know what happened in that delivery room, in those moments before or after birth that slightly scrambled a small part of my brain that spends messages to the muscles in my legs. Although my “condition” (aliment?  \Predicament? Malady?) has always been known to me, it was not something openly discussed in the past with many individuals. For one, it was not a huge deal for my parents and therefore was not a huge point of life drama for me. Second, I just have never felt super comfortable discussing such matters.

I have had many theme songs this year. Songs that have rallied me on (Thank you, Katy Perry, for realeasing “Roar” last fall because I still have a cheesy 14 year old girl living inside of me.). Songs that have inspired me. Songs that have focused my rehabilitation. One of those songs has been “You Make Me Brave” by Amanda Cook. I can be all “I had to be brave because I had surgery” obnoxious here, but that is not how this particular song speaks to me. The lyric “You called me out beyond the shore into the waves” encapsulates my vision of this journey. Because here is the deal. This thing about me…. this thing that I have secretly wished would not be part of who I am for 36 years… is basically fixed (*). These past 365 days I have wanted to channel the eight year version of myself and tell her “It’s okay. It gets better. Things are made better beyond what you ever imagined.” But in the “fixing of these things” I have discovered that it was the very thing about myself that I have always wanted changed who made me the person I am and is the thing that God used to shape my heart.

He did not call me this year beyond the shore. He called me repeatedly over the past 36 years to step off a shore of fear and comfort into those waves. He called me to get on with life and be brave even when “things” made me want to be hidden at times.

These past 365 days, I have wondered more than a few times what life would been like had I had SDR as a teenager. This operation was in its early stages in St. Louis when I was in my teens. In fact, upon meeting Dr. Park (the amazing surgeon in St. Louis who is one of my heros…and a hero to so many others…and really the picture of humility and graciousness), he told me how he knew my childhood orthopedist, which lead me to believe that most likely my childhood orthopedist knew that SDR was happening a mere six hours from my hometown and not once did he provide it as an option for my parents. If you know my parents, you know they would have been all about checking into it and seeing if I was a viable candidate at that time.

Yet if I had experienced the surgery at let’s say 15, rather than another heel cord lengthening procedure like I did that year, and this “thing” about me was made irrelevant, would my journey be completely different? God has redeemed so much of my story, as he has yours. He called me by name, saying that my birth story (born with a disability to an unwed mother) was not an indication of my life story. He has shown me that things which appeared to be flaws and limitations were the very things he was using to set me free.

I paid a lot of money this year to realize all of that.

This journey is only beginning. I am so beyond grateful for the past 365 days, for the countless individuals (friends, family, nurses, doctors, PTs, and my fellow SDR peeps…both adults and children…who understand this journey.) who have rallied beside me, encouraging me along the way. I am grateful that a doctor in St. Louis realizes that spasticity can indeed be splayed and for his phenomenal team. I am grateful for parents who instilled in me what the important things in life are and that the little things simply do not matter. I am grateful for a husband who has been my rock for so long, but especially this past year. He has filled these days with laughter and encouragement and lots of Sonic beverages.

Sometimes we let our greatest fears serve as our biggest hesitations in life. Yet those fears are the very thing that will let us one day fly.

365 days later and I am soaring.

 

“There is freedom waiting for you

on the breezes of the sky.

And you ask, What if I fall?

Oh, but darling,

what if you fly?”

-e.h.

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Meet me in St. Louie

Back a few months ago, I asked the husband if he would be interested in taking a vacation to St. Louis. Always one up for an adventure, he replied with a casual “Sure.” I then explained that said vacation might involve a hospital stay and a recovery period. Fearing that I may be planning a vacation based on the Hangover movies, he quickly asked me to explain. Once I did, and he discovered there would be no tigers in the bathroom and disturbing face tattoos, he was on board. (BTW, I have only seen the first Hangover movie and have now referenced it twice. You are welcome.) Allow me to explain to you as well as to why we are vacationing in middle America so that our trip involving hopsitals makes a bit more sense. At some point when I was born (29 years ago…wink, wink), my brain was most likely deprived of oxygen. Because I am adopted, the conditions around my time in utero and my birth are mostly unknown. However, we do know something went a bit wrong. This oxygen deprivation caused me to have Spastic Diplegia. In very (VERY) general terms, Spastic Diplegia is when the brain is sending faulty messages to nerves to always tighten some particular muscles (in my case, in my legs). Some of you reading this may have known me for twenty years and have never heard me mention that term in the course of our friendship. It is not something I speak about often because it is not a huge part of who I am. Growing up, it was something significant I dealt with and had several operations and wore leg braces at different times when I was very young. Because I grew up in a small town, people just knew this about me and no one ever asked. Friends didn’t care about it one way or another and so it never really became too much of a topic of conversation. My parents were awesome in that it was not a big deal around our house. I missed the occasional day of school to go to out-of-town doctor appointments and got to eat at a nice restaurant of my choosing. Fun times in the life of a ten year old. Other than that, it was life as usual. My parents are pretty cool like that, in a very “low drama” kind-of way. Most people with Spastic Diplegia receive treatment as a child and as an adolescent. Once they move into adulthood, it is thought that nothing more can be done. My case is very mild and I was dismissed from the doctor following my case around the age of 16. I remember him saying that I was perfect from the knees up and if I just wore shoes with heels a lot, I was good to go. (Side note to all doctors: Please do not tell a sixteen year old girl that there is a small part of her body that is not perfect. I was a pretty confident kid but that comment stuck with me for quite a while. Again, I was fortunately blessed with parents who stressed such sentiments like “It is not a big deal.”) Fast forward to life now: I am very active. I lead a healthy lifestyle. I have an adoring husband who thinks it is pretty cute when I am a bit more clumsy first thing in the morning or when I am super tired. I wear heels about 90% of the time (Praise the Lord for the wedge coming back in style). I worry more about the fact that my daughter only eats about five foods and my son entered the world of Pokémon obsession than about tight leg muscles. However, my body is aging a bit faster than it probably should be. I have always had aches and pains. My legs can feel like really tight rubber bands, especially in cold weather. Things have always felt like this, so the aches and pains are not alarming but rather just inconvenient at times. What honestly caused me to evaluate these pains and the overall aging of my body was an eye doctor visit last November. (It is always the odd stuff that makes us evaluate life, huh?). Anyway, I went in for my yearly eye exam and the doctor was really concerned about the worsening of my eyes. I have always had bad eyesight and have worn glasses/contacts since around first grade. During that particular exam, the doctor said I would need bifocals within a year and that my eyes were getting significantly worse at a faster speed than what is normal for someone my age. Lovely. I mulled over those thoughts during Christmas last year, wondering if my time spent on the computer was the causing factor to this decrease in eyesight. I pictured myself in huge bifocal glasses and prayed that the thick “Nerd” glasses that are in right now would stay in forever if I had to make such a fashion statement with my eye wear. Then I began to really listen to my body and realized that it was not only my eyes that were aging quickly. It was my knees, my hips and other parts of me. Despite the fact that I work out five+ times a week, eat relatively clean and maintain a good weight, my body was older than its 36 years. So I began Googling. Through the magic of Google I ruled out various terminal diseases (Who doesn’t love a good Web MD checklist late at night that leaves you wondering if you have mere weeks to live from a rare and vicious brain eating amoeba?). I then stumbled upon the aging effects of having spastic diplegia. Despite my active lifestyle and all the interventions my parents made sure I had from a very early age, my body was wearing down. I even discovered that the muscle tightness in my legs can effect my eyes. Now I no longer feared the bifocal glasses or the brain-eating amoeba but instead started to worry that by the age of 50 I could be in a wheelchair. Seriously. Deciding it is probably pretty hard to participate in early morning boot camp at the gym in a wheelchair (That class is one of my loves, by the way. It keeps me sane and makes me a better mommy and wife.), I started to research options. That is when I came across Dr. Park, Selective Dorsal Rhizotomy and the St. Louis Children’s Center for Cerebral Palsy Spasticity. In very basic terms, Dr. Park has developed a way to treat spastic muscles. He does so by cutting some of the nerves in the spine that are sending the faulty message to the muscles, causing them to be spastic. (If interested, read more about it here in which someone has done a much better job of explaining a complicated four hour surgery than I have. Of course, they used more than one sentence to do so as opposed to my super brief explanation.) This surgery is mainly done on children. Dr. Park is the only surgeon in the United States who will perform it on adults and has only done it on 66 adults to date (I will be number 67!) Long story short, this summer we spent a good portion of our time devoted to applying for SDR (what all the cool kids call Selective Dorsal Rhizotomy). I had various doctor appoinments, tons of hip xrays, physical therapy evaluations and two MRIs (One of my brain and one of my spine. Praise the Lord for insurance because the total bill for that would have been around $20,000 without insurance coverage. Also, want to become best friends with your insurance company? Have two MRIs. They will call you right up and ask what is going on.) We finally got the word that I was approved for SDR at the end of July. Scheduling takes a while, especially for adults, and I was given the date of October 25th. In case a calendar is not nearby to where you are at the moment, October 25th is next Friday. So the husband and I are vacationing in St. Louis (while other people are staying at our house…which is just a few doors down from a police office…and is in a neighborhood highly patrolled by the local police. Just FYI.) for eight days. I have two days of pre-op appointments and surgery is on Friday (and takes about 4 hours). I then get to spend three days in bed laying flat on my back to prevent any cerbalspinal fluid from leaking out while the incision heals. For those of you concerned about the fact that I never jumped on the Downton Abby bandwagon, no worries. I plan to catch up during those three days. On Day 4 post-op, physical therapists get me up out of bed and I basically retrain my brain on how to walk again. Day 5 is intense PT and then I am released to go home. Good times. It sounds dramatic but it actually is pretty exciting to walk without tight legs. The process of learning to walk again happens fairly quickly as well. I have amped up my workouts in the past two months, getting my body as strong as possible for that Day 4 when I get out of bed for the first time. Dr. Park advises adult patients to have strong core muscles to help in this process. My abs are actually pretty tight (they just never really see the light of day under my Mommy swimsuits in the summer), so I am thinking those 200+ situps I do a day have not been done in vain. The recovery period is long, even after I return home. I will be in physical therapy five days a week for quite the while and then can eventually switch over to being back in the gym as my physical therapy. I cannot drive for 2-3 weeks and I likely will be using a walker at different times during those first weeks at home (The children are thrilled about this one.) We have so many family members and friends on board to help us with this recovery. This is one of those “It takes a village” kind of times. The kids know what is going on and they understand it is time for them to step up and pitch in (which they do already but it is time to really step it up now). As always, the husband is ready for a challenge and does not even bat an eye dramatically when faced with this challenge for our family. So we are vacationing in St. Louis this fall. Anyone going anywhere a bit more exciting ?     (I will be documenting this journey on the blog. If you want to stay in the loop, you can follow the blog on Facebook or subscribe to it as well. Thanks!)

Surviving Summer: Super Summer Challenge

Thursday night for dinner we dined on Chicken Nugget Kabobs, Sautéed hot dog buns, fruit salad, and cupcakes.

Obviously not the typical meal plan one would find on Pinterest or among the pages of Southern Living magazine.

However, the meal was met with a round of applause from the entire family.

Especially from the chef who was cooking the meal for us.

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The seven year old taking charge of the kitchen is part of our Super Summer Challenge. The Super Summer Challenge is based on the book by the same name and is anidea of how to keep kids busy and productive during the summer months. In years past, we have done various point earning systems during summer months. We have completed learning units and had scheduled days of fun (all the way back to the kids preschool days when we had a set activity for each day of the week…and simply repeated the activities on weekly basis). This year I decided to follow in many of my friends’ footsteps and create a Super Summer Challenge for my kids.

The idea behind the Super Summer Challenge is that kids will be challenged in various areas to promote learning and growth during the summer months and cut down on the whole “I’m bored and must constantly be entertained 24/7″ phenomenon. For our family’s challenge, we decided to create goals in four areas: Spiritual, Physical, Creative, and Academic. There is also a bonus area for random things to be completed in order to earn bonus points (Teb minutes of weed pulling, anyone?)

Each area has a list of goals underneath with each goal earning a set number of points. Some goals are worth quite a bit (for example, planning and cooking dinner for the family is worth 8 points) while others are valued at less points (completing a worksheet out of summer workbooks are worth one point). We have a chart that outlines what is earned at various point totals. Some point values are large while others simple serve as a motivator to keep earning points. The big summer prize is a trip to the local waterpark.

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The system works by the kids looking at their goal sheets (which are large posters taped to our kitchen pantry door) and decide how/when they want to earn points. We have point record sheets taped to the inside of the same pantry door (because they are not as pretty as the goal sheets). The kids are responsible for earning and keeping up with points. There is no nagging from mom to earn points or to mark points. If they want the prizes, they have to earn the points.

I keep it easy because I do not want my summer challenge to be managing my children’s summer challenge. That does not seem like a fun mom task to me. However, both my kids can read and do math which makes them keeping up with their challenges an easy process.

Some prizes are earned individually (for example, choosing from our coupon jar or earning money) while others are group prizes. Group prizes mean that BOTH kids have to reach that point level before that prize is earned. I believe having both individually earned prizes as well as group earned prizes keeps all involved parties interested. Here at casa de Phillips we have one child who is super-motivated to get things done while we have another who is happy to skip through life and not worry about such things as earning points until the last day possible. Our Super Summer Challenge runs for two months, from June 10 – August 10 (we start back to school on August 11th).

 

Here’s the big question: What are your kids goals?

 

Grab a drink, give the kids the ipad and take a minute to check out the things the little people are casa de Phillips are working on this summer.

First…a little glimpse of our Super Summer Challenge posters..

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Spiritual Goals:

Learn the books of the Old Testament

Learn the books of the New Testament

Attend *** Camp

Attend *** Camp

Attend Church Music Camp (Yes, we are doing three church camps. )

Read a biography about a missionary

Memorize Scripture

Complete family study of book of John

Spend time reading from your bible and tell about it

 

Creative Goals

Plan and cook a meal

Learn how to completely clean a bathroom (They have been cleaning bathrooms for years…but we are stepping up the process quite a bit)

Learn three new songs on the piano

Learn how to wash sheets and towels and remake bed

Make a gift for someone

Learn how to vacuum (Again..stepping up the process)

 

Physical Goals

Dribble a ball 50 times without stopping

Extended bike ride

Swam x number of laps of the pool

Attend *** sports class (this is different for both kids since they do different sports)

Stretch twice a day (Evelyn)

Practice various baseball skills (Isaac)

Get to the top of the climbing wall at the pool

 

Academic Goals

Complete a book study (each child has a book and the corresponding study. Isaac is doing Ben and Me and Evelyn is doing Nate the Great)

Daily Spelling Practice with All About Spelling

Complete 10 Day Multiplication challenge

Cursive copywork (I put up daily copywork for them to copy from our white board…right now no one is too motivated to get this accomplished. Going to have to alter point values for this one.)

Journal Entry

Write a proper letter to a friend

Workbook page

Complete a reading program

 

Bonus

Complete weekly chore chart (this has been in place for a long time…just adding motivation to keep on truckin with chores)

Obvious display of kindness or compassion

Tackle extra cleaning assignments

10 minutes of weed pulling

Clean out art closet

 

There you go…the casa de Phillips Super Summer Challenge. Each goal has a set point value (with an overall goal of attempting to achieve 225 points this summer in order to win the Big Prize of a trip to a local waterpark). The point value of goals depends on a variety of factors: the actual goal (goals that can be repeated indefinitely over the course of the summer are often worth one or two points will loftier goals can be 10-15 points), the motivation of the child to achieve said goal (goals that are easier for a child have a lower value than goals that really stretch the child), and the time frame of the goal (if the goal is going to take some practice to achieve…such as learning three new songs on the piano…then that goal has a higher point value). I also have goals that I would like to achieve this summer (although I have yet to craft a cute goal sheet for myself). For my goals, I am going to assign point values for their completion as well. However, my points will go onto the kids’ point sheets. I think this serves as a win-win situation: they earn bonus points and I get to use the phrase of “Mommy needs to get this chore/task/annoying thing done so you can earn bonus points.”

 

Well-played, huh?

 

Four days in and the Super Summer Challenge is going great. I have already had one night off from supper duty (Another well-played goal) and both kids are eager to get summer learning and practice in during our two months off of school. And those cries of “I’m Bored!” have yet to be heard because there is always something to achieve on the Super Summer Challenge board.

 

How are you surviving the summer this year?

The Mommy Time Warp: Can you help?

It is a productive school day here at casa de Phillips (which was needed after yesterday’s “School on the Move” as we shuttled books and papers back and forth between three appointments in three different cities).

Currently this is what my desk looks like:

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Although we may be quite productive this morning, my desk screams “Chaos!” However, I am fine with that at the moment.

Time management for moms can seem more like a time warp than an actual ability to balance responsibilities. There are moments when everything seems to be in a perfect familial rhythm and then seasons where it all feels like the slightest thing will unravel any well-laid plan.

My question for you, reader, is how do you approach time management as a mom (or dad or grandparent or random individual walking this earth attempting to carve out a life like the rest of us)? What is a tip or trick that helps you? For example, a dear friend of mine just finished a horrible week of sickness in her home where all five family members were terribly ill and all five family members were on various medicines and various medicine-taking schedules.

That is the stuff mommy nightmares are made of, right?

That friend managed her time that week by making up a nice little medicine taking chart for the whole family.

Sure, her laundry piled up and school work went undone.

However, she tackled a little bit of time management by making sure her family was on the road to health and well-being by ensuring everyone took their medicine when indicated by the handy little chart.

Share your tips/tricks/thoughts/horror stories here.

(Just for a little transparency, please know that I am working on a piece about time management for moms and love to hear “real world” advice and thoughts.)

A Spoon Full of Sugar

For the past six years, I have blogged about family themed Halloween costumes.

We have been Robin Hood, Nintendo characters and a crime-fighting gang.

The family Halloween costume is a pretty big deal around casa de Phillips. Despite the love for a themed costume, this year there will be no theme. Our family is actually going to be apart this year on Halloween, so a theme just was not going to work. We let the kids choose their own costumes, assuring them that next year we would all venture out together in a themed attire once again. Fortunately we were able to participate in our small group’s Halloween party, giving us the chance to snap multiple picture of our kids in their costumes and fill our friends’ Facebook feeds with pictures that all look the same.

You’re welcome.

Allow me to introduce Dorothy:

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The girl is a bit infatuated with Dorothy after dancing in a ballet version of the Wizard of Oz this summer.

It was a no-brainer that the boy was going to be the X Wing Fighter Pilot version of Luke Skywalker.

 

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Orange really suits him.

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Thursday of last week the kids inquired as to what my costume was going to be this year. Until that moment I had not even contemplated dressing up for the party. Life has been running at full speed lately as I have been attempting to get our entire family ready for my surgery. I could tell that the kids really wanted me to dress-up. A quick Pinterest search provided me with a fabulous idea: Mary Poppins.

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Fortunately I was able to create my own Mary Poppins costume out of things I (mostly) had on hand.

Want to be Mary Poppins this year? Simply pair a black skirt with a white button down shirt. Toss on black tights and black boots. Fasten a red bow around your neck and use large ribbon around the waist to create the look of a belt. Hot glue some old fake flowers onto a black hat and look for a tapestry bag in the back of your closet (I did have to purchase this at a thrift store. It is now a part of the girl’s dress-up bucket.). Grab an umbrella and don your best British accent.

Congratulations you are now Mary Poppins and a rock star Mommy in your children’s eyes.

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The husband went to the party as well.

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He went as himself as his appearance at the party was very last minute (We thought he was going to be on a business trip…thankfully he was not).

 

True there are no Halloween themed costumes this year. But we have some cute pictures and fun memories.

Plus I found a Baby Ruth in my kiddos pre-Halloween/Homecoming parade candy stash so I call it a “win” for me.

 

 

Are you there, Blog? It’s me, Lynley

Apparently I took a two month break from blogging.

Two. Months.

This break was partly intentional and a bit unintentional. April and May bring with them crazy schedules and busy times. In the midst of those months I kept saying “Once school is over then I will have more time to breathe.”

Well, school ended and summer started and things still seem crazy busy.

I hate crazy busy.

The funny thing is that I personally create crazy busy for myself and my family. I sign us up for activities. I text friends for play dates. I make sure we are enrolled in various classes year round.

I am raising children to expect crazy busy.

One day perhaps I will figure out the balance that is needed. A balance between being at home and being involved and not having the word crazy attached to either.

in the meantime I have to grab the kids from swim lessons, stuff some lunch down them, drop one off at dance and take the other to a play date .

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