Why every birthday is a celebration of surviving another year

I rarely share this and to many of you you’ve never heard what went down 22 years ago to lead to my August 12th birthday. My dad decided to share what shaped our lives that day and I’m deciding to share his words here!

Hey Guys!

Certain days and events shape our lives. Below is a reflection on one of those life shapers in my life 22 years ago. August 12, 1993.

…..with the lives of both my wife and daughter hanging in the balance. The bullets below outline the timeline between 6pm and 6pm
· 8/11/1993 –
o Noon – a beautiful day. Have taken the day off work and taken my wife out to lunch. She’s 28 weeks into her pregnancy with our first and only child.
o 6pm eastern – onset of symptoms preeclampsia
o 10:30pm eastern – full eclamptic seizure at our house.
Medically my wife stopped breathing for the next 45 minutes. No blood-flow to her or our baby. Her body is shutting down.
o 10:40pm ambulance arrives – I pick up all sorts of large furniture to move out of their way. {no idea how this happened}
o 10:50pm ambulance leaves, taking an alternate route to nearest hospital [We learn later that there was a massive wreck that had shut down the interstate. If we had left for the hospital earlier, all this would have happened in our car……]
o 11:15pm eastern – wife begins to breathe via life support and oxygen gets to our baby for the first time in 45 minutes
o 11:30pm eastern – it’s clear that our child had to be delivered or there was no chance for either of them
· 8/12/1993
o 2am – my wife is transferred to Christ Hospital where she worked as a Labor & Delivery nurse
o 4am – my wife enters the Operating Room. Many of her co-workers + me are in the OR … fearing the worst. I pray it’s a girl because they’re stronger!
o 4:45am – our Daughter Hannah is born. 12 weeks early. 3lb1oz. kicking and screaming I’m thankful we had names picked out so I didn’t later get in trouble……..
o 6pm – Hannah struggles to breath, is placed on ventilator, and is transferred to NICU at Children’s Hospital in Cincinnati.
I now have my wife in ICU at one hospital, my daughter in ICU at another
My wife with more IV lines than I could count, and my daughter on full ventilation to keep her breathing
· 8/20/1993
o I’m given the news by both my wife and daughters doctors that they think they will both live
o There is discussion that our daughter may never see, hear, walk, talk….

That day Hannah, showing her gumption and will power, turned over in her isolette
· Mid-September 1993
o Both wife and daughter are home

· August 2015
o Hannah moving to Nashville to continue studies in Journalism/Communications. Lauded by University of Cincinnati professors as award winning writer with a special passion and ‘voice’ in her written and oral communications.

For Me Everyday is CP Awareness Day

It’s been forever since I’ve blogged. A lot the reason why is my CP. It sounds silly to say that but it’s true. I had debilitating left hip pain for awhile and I finally caved and went to the doctor.

In October I found out I needed major hip surgery due to my hip being out of the socket. If you’ve been keeping up with me at all you know I had surgery January 30th. “Peri acetabular Osteotomy” Big words meaning breaking my pelvis and femur repositioning it in the socket and then holding it together with nails. My life since then has revolved around recovering and rehabilitation of my hip.

I wrote a blog for National CP Awareness Day last year. If you haven’t read it yet I recommend you do. It talks about my life with CP up until that point.

Little did I know that a year later my life would be turned upside down by Cerebral Palsy. When I wrote the blog last year I never imagined I’d be writing this one in the middle of recovering from a major hip surgery.
CP it’s self isn’t progressive. However, due to my spasticity and the way I walk my left hip worked it’s way out of my pelvis.

I’m realizing more and more that everyday of my life is CP Awareness Day. My friends & family know that they need to be close by for me to grab their arm. Before I leave the house even before my surgery I have a conversation with myself trying to figure out if I’ll need my walker, crutches, scooter or wheelchair wherever I’m going.

Most of the time I bring one of those things along just incase. I’m blessed with friends who are willing to cart around whatever assistive devices I need. Whether I’ve brought them or not they’re willing to be there to help me walk if I need it.

Driving is it’s own challenge for me, I drive using hand controls. Learning to use those has been an adventure but it’s a challenge I haven’t backed down from.

Having CP means I’m no stranger to stares, comments, people talking behind my back about the way I walk. I was told I’d never be able to walk and at the age of six I took my first steps independently. The people who make those comments or stare, don’t realize that every step I take is me defying the odds. They also don’t realize how hurtful those comments are.
I could let those negative things keep me from living instead i choose to live my life… That doesn’t mean the negativity doesn’t get to me sometimes it does!

I’m an independent person so asking for help used to be hard but I know it’s unavoidable at times, especially while I’m recovering from this surgery. I used to feel the need to apologize when I lost my balance or was unable to stand when we were taking a picture or something. I now know that that’s crazy and I don’t need to apologize for those things.

Cerebral Palsy may slow me down at times but it will not stop me from living life to the fullest.

– Hannah

Why I talk about CP

A little over 21 years ago a little girl was born after her mom had an eclamptic seizure. When she was born dr.’s didn’t know if she’d survive but she did. At around 2yrs old she was diagnosed with Cerebral Palsy, Her parents were told she’d never walk but at 6 she took her 1st steps independently. Having the ability to walk was something that little girl was so proud of but she would need a wheelchair for school, long distances crowds etc. If you haven’t figured it out yet that little girl is me.
When I was younger I never talked about my CP. My family & friends just accepted me for me & CP rarely came up. In fact many of my friends in high school never knew why I use a wheelchair. My parents always told me CP is what I have not who I am so I never saw the need to discuss it.

That’s all changed over the past few years. I’ve been asked by people why I now talk about CP… It’s is still what I have not who I am but that’s exactly why I feel the need to discuss it. Ever since I’ve been in college and the real world it’s became painfully clear that CP NEEDS TO BE DISCUSSED so people understand that.
This blog it’s self was inspired by discussion involving Dr.’s lack of CP knowledge.

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Cerebral Palsy is an umbrella term and many with CP aren’t able to tell others about how CP makes them feel or what they wish people understood. So I decided it’s up to me to start talking.

-Hannah

If I could write a letter to me.

Sometimes I hate sleepless nights but sometimes I think they’re when I do my best thinking. I was listening to Brad Paisley and ‘Letter to Me’ came on. “If I could write a letter to me and send it back in time to myself at 17”. I loved the song when it first came out because at the time I was the teenager he was writing to.

As I was listening I thought about a conversation I had with my mom the other day, we were watching Parenthood and I’m not sure what triggered it but I had a major breakdown. I was reflecting on how stressful everything had ever been but at the same time I had this ah-ha moment that yes things suck or have sucked and frankly still do. I’m in a better place now than I was at 17.
So this is what I’d say in a letter to myself…

Hey Hannah,

I know right now you don’t see how you’ll graduate high school let alone go to college. When it comes time for graduation I promise you won’t fall walking across the stage and as much as your legs hurt it’ll be worth it. Also when Dad goes to video remind him to make sure the video camera is focused on you and he doesn’t end up just filming his watch as you walk in.
The summer after senior year will be amazing and you’ll be able to see the ocean take every second in and take a ton of pictures.

College will present it’s own set of challenges… It’ll take you longer than other people because of things that you aren’t able to control. I’m just telling you this now so you don’t beat yourself up about it.

People say that your love of Carrie Underwood is ‘just a phase’ it’s not. Although that statement shouldn’t be a surprise to you. You’ll meet amazing people because of it and make amazing friendships with people you would’ve never expected. Also keep your eye out for a Duo called “Two Story Road” they’ll have a big impact on your life and are really just awesome people.

Save every birthday card from Aunt Betty because when your my age you’ll wish you had.

When you take sign language give your teacher a heads up about your CP it’ll make your life so much easier in the long run. That class will open your eyes and heart to a whole new passion and purpose.

Believe it or not you actually become comfortable enough with your
Cerebral Palsy that you begin talking about it openly. Oh while we’re on the subject as much as you hate the idea of getting a walker it will make your life so much easier, do it! Just remember you’re much more than the way you walk. Remember that little girl Alena who had CP? You end up becoming friends and plan something really cool.
Keep in touch with Riley do everything in your power to be a part of her life, if you don’t you’ll grow apart and miss her more than you’d think.

Lastly, I hate to tell you this but you end up with a whole new set of medical problems you’ll feel like your body hates you. (I feel that way now as I’m writing you) don’t give up on life keep fighting… I don’t know the outcome of all this but I want you to be ready to fight with all you have.

I know you don’t know how to do this now but learn to love yourself and stop worrying so much! (I still struggle with worrying but maybe if you start working on not worrying now it’ll won’t be an issue anymore.)

See you in the mirror,
Hannah

So that’s my letter to myself what would you write in a letter to your younger self?

P.S. I promise a CMA fest recap post is coming soon

I’m letting go so give me one more chance.

Although I’ve heard the song thousands of times there’s something about Jesus Take The Wheel that will always give me chills.
I’ve loved the song from the very first time I heard it at the age of 12. The song has grown with me and just always been there. From my mom being in the ICU in 2006 directly following my first Carrie concert. Speaking of which, There’s nothing better than being in Cincinnati hearing Carrie say “She was driving last Friday on her way to Cincinnati.” To surgeries and sicknesses I’ve endured myself. JTTW has always been a constant. As some of you may know my dad is a minister so at first I was drawn to the Godly message of the song. But it’s so much more than that.

About 2 years ago I had what could’ve been a really bad wreck. We were “on our way to Cincinnati” headed back home from my Grandma’s house in Tennessee. It had started to drizzle rain and these were curvy back country roads I was unfamiliar with and before I knew it I was off the road and smack in between two sets trees. I’d got the car stopped with only inches between the front set of trees and the hood of my car. And there was about a foot between the trunk of my car and another tree. As shaken up as I was I know that Jesus had literally taken the wheel and it wasn’t mine or my Dads time to go. From then on the meaning of the song became a little more concrete.

When I was in Nashville earlier this month I had the honor of hearing Carrie sing Jesus Take the Wheel from the front row of the Grand Ole Opry. They call the Opry the Mother Church of Country Music, and when Carrie sings that song there’s no truer statement. You can feel God’s presence.

Life had been extremely stressful over the past 2 weeks since I got home from Nashville. Filled with sleepless nights trips to the ER and spending the day at the hospital with my mom so she wouldn’t be alone. Watching her struggle while I’m struggling myself is almost too much to handle. But on nights like tonight I cling to the lyric,

“Jesus take the wheel
Take it from my hands
Cause I can’t do this on my own
I’m letting go
So give me one more chance
Save me from this road I’m on
Jesus take the wheel”

It reminds me that God is always in control even when we can’t do it on our own. All we have to do is let go and surrender control to him. Its okay to not be in control and God is always there to take charge of the wheel for us.

~ Hannah

I crash and I break down… I’m only human

I broke down yesterday simply because I was showing my mom a picture of my friend and I from graduation and my wheelchair was off to the side behind us. I’ve had this mental block my whole life where I want to stand in pictures I don’t want to have my wheelchair / walker / crutches in them either. I broke down again today because I was just frustrated with needing my scooter. Everyone close to me has never made an issue out of it. My cousin Tahli always says “it’s not an issue it’s just a matter of what chair will work best for whatever we’re doing.”
Over the past few years it’s quite obvious to me that I put these mental stumbling blocks in my path. I’ve talked about how I struggled with getting / using a walker again. People have said to me “Han I think you’re trying to give up because you’re using you’re crutches & walker again!” I adamantly deny that because deep down I know it’s what I HAVE to do right now! But in the back of my mind I HATE the fact I have to do it…
Fast forward to a half hour ago. I was on YouTube watching videos of Carrie Underwood performing at the Opry. I was about to close the app when I noticed this video in the suggestions and for a moment I was bummed because CP hadn’t been on my mind… I thought why is that suggested I don’t want to watch that I want to escape and watch more Carrie Videos!!
After watching a few more Carrie videos I decided to go back and watch it. I realized the reason it was suggested God knew I needed a reminder to keep trying and keep moving forward… even when it’s hard and I feel I’ve failed. I needed to be reminded it’s not easy but I can do it! I can either keep moving forward or choose to give up…
I choose to keep moving forward,
Hannah

National Cerebral Palsy Awareness Day!

Since it’s Cerebral Palsy Awareness Day I thought I’d share something very personal to me that I don’t normally talk about … How I ended up with CP and it’s effect on my life.
I was born at 28 weeks after my mom had an eclamptic seizure. Most women show signs of preeclampsia but in my moms case it happened really fast. She was fine, then wasn’t feeling good, then the next thing they knew She was having a seizure in our bathroom.
Long story short both of us spent 45 minutes without oxygen. She turned black from lack of oxygen while they were waiting for the ambulance.
My mom had the seizure on August 11 it was after 4am on the 12th. by the time I was delivered. When I was delivered I also had my cord wrapped around my neck.
Being born early and spending time without oxygen are both risk factors for CP.
When I was little I hit all my developmental milestones expect crawling & walking. When I was really young I rolled everywhere to get where I needed to go. Once I started crawling I crawled everywhere and crawled fast! I could hold a conversation with anyone by the time I was 3 I’ve always been a super talkative person.

At the age of 18 months they lengthened 16 of my tendons.

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Aren’t my pink casts awesome!

Around that time I started going to physical therapy and it’s been a part of my life ever since. Since I started going to PT at such a young age for a while I thought it was just something everyone did.

At 4 I had both my hips broken and repositioned in the sockets & held there with metal. When I was born neither of my hips where in the sockets.

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These purple casts went from my ankles all the way to my ribcage.

Here’s a walker pic from my first day of kindergarten.

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Around 2 years after having my hip surgery, I had to have the metal removed because my body wasn’t tolerating it and I was in extreme pain!

Two months before I turned 7 I started walking on my own.

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Crutches picture from when I was 7

In 5th grade I stopped using my walker and crutches all together.

I walked independently but had to, use a wheelchair to get around school, travel long distances and to navigate crowds.

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Lakota West High school Senior Picnic!

I was determined to walk at graduation. Different teachers and staff tried to deter me from doing that but I accomplished it.

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Graduation 2011

Unexpectedly my freshman year of college my right hip started giving me problems I ended up having to start using my crutches again and take a quarter off school to have hip surgery.

I also ended up getting a motorized scooter to cut down on fatigue from pushing myself in my wheelchair around campus!

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Scooter Picture outside the Country Music Hall of Fame 2013

Not long after my hip surgery I ended up with severe pancreatitis among other GI problems that I’m still struggling with. Although that is non CP related it has caused me to be extremely weak. Which has caused me to need the use of a walker and crutches once again.

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CP has made my life more challenging than normal and I’ve had to overcome a lot but I feel I’ve become a stronger and more mature person because of it!

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Hannah

You don’t have to hide it anymore

Yesterday started out great then by the end of the night I was discouraged and overwhelmed then I was watching Hunter Hayes New Video one line of the song goes…
“So your confidence is quiet
To them quiet looks like weakness but you don’t have to fight it
Cause you’re strong enough to win without the war
Every heart has a rhythm, let yours beat out so loudly
That everyone can hear it, yeah, promise you don’t need to hide it anymore
Oh, and never be afraid of doing something different
Dare to be something more

The part of the song that’s bolded really spoke to me. “You don’t have to hide it anymore” Growing up CP was just a part of me but I rarely talked about it. In fact in public I always tried to try to hide it. In a way I think that’s why I struggle with using my walker and crutches again because it makes the fact I walk differently blatantly more obvious …. I’d been fighting a war with myself trying to hide the fact I was different and trying so hard to just ‘fit in & be normal’

Shocker: I’m not ‘normal’ but what is ‘normal’ anyway?

It’s okay, to not hide it in fact it’s okay to “never be afraid of doing something different” which is what I’ve found myself doing lately, by starting a Facebook page and attempting to plan a walk for CP awareness. Just being more open and talkative about my Cerebral Palsy and talking about how it’s affected me.

At the same time I can “Dare to be something more” I know that CP isn’t the defining factor of who I am and I am so much more than the diagnosis. It’s just a part of what makes me, me! I’m so much more and need to remember that while I’m using my voice to spread CP awareness. 🙂

Talk to y’all later
Hannah

PS Make plans now to wear Green for National Cerebral Palsy Awareness Day on March 25th

Decorated my walker and crutches

As many of you know I wasn’t exactly thrilled with the idea of having to use a walker again. Mainly because around the age of 10 when I quit using the one I had grew up using I promised myself I wouldn’t use one again. Frankly promises you’ve made to yourself are the hardest to break however I know that using it is what is best for me right now.

My dad had bought me some fancy duck tape that he’d found on clearance about a month ago so today I decided to play around with jazzing up my walker. Here are some pics of how it turned out

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I’m pretty satisfied with the way it turned out! The black and white polka dots are my favorite but the other two designs are fun to add a POP of color.

Incase you missed it I also am the proud new owner of a new pair of ‘sticks’ or what everyone else refers to as crutches. I decided to duck tape them as well…

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I purposely decorated the tops with different patterns so that I could tell them apart because from time to time I just use once crutch and this way I can insure I rotate which one I use when only using one.

Let me know what you think, and comment any suggestions you might have for the next time I decorate my walker!

Hannah

Walk of Hope for CP awareness

Hi beautiful readers,
Unless you are a select few I chose to invite to like the fb page while our logo was still being constructed I’ve been keeping a secret. My friend and I are attempting to plan a walk for Cerebral Palsy awareness. Our target date is March of 2015 in order to get everything planned and executed! We are still in the planning brainstorming stage but it would mean the world to me if you’d head over to our FB page and like the page! That way you can keep up with the process and be able to participate when the time comes!
A little back story:
Alena and I went to elementary school together! I first remember her as a kindergartner when I was in 5th grade. We lost touch due to the fact I went on to Jr. High. At the ages of 10 and 5 a 5 yr age difference seems like a lot.
We started following each other on tweeter because we both participate in a live tweeter chat Wednesdays at 8pm entitled #cpchatnow. After some talking back in forth on there we exchanged numbers and have since Skyped and started planning this walk! We still live just 5 minutes from each other yet went 10 years without talking how crazy is that?

I’m extremely excited about what this walk could end up turning into but it will only be a success with YOUR support!
– Hannah

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Shout out to Hannah Lee for coming up with the slogan and Alena’s friend Hannah Matuszak for creating our awesome logos!
There is one problem with having the name Hannah, you end up with friends with the same name and sound like you are talking about yourself in 3rd person! 🙂