My Journey Towards Walking: The Beginning

Hello Friends!

Today, I wanna take time to write about a new endeavor I’ve embarked upon lately. I’d considered waiting to talk about this until the procedures I started doing it for was secure and a for sure go, without many hiccups. But I’m making so much progress so fast, that I decided to share the journey with you all now. Or at least tell you all of everything up until this point and beyond. As I continue to progress through my journey toward walking independently.

So, first as always, a little bit of backstory… As many of you know, I was born prematurely which would ultimately serve as the thing that would help me survive. Because a few short weeks after, it was found out that my inability to come off the ventilator was caused by a condition called, Double Aortic-Arch Anomaly, (DAA). This would need immediate surgery if I was to survive much longer. And ultimately was successful in saving my life. But I would not come out of my ordeal completely unscathed. At the age of 10 months I was diagnosed with atypical spastic quadriplegia cerebral palsy. Anyway, to read a more in-depth telling of this part of the story please read the page of the blog entitled, My Story.

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April 1994: Me, Sammantha on the family sofa at 9 months old. Lying on a pillow chest-down, head up, independently supported for the first time ever.

Twenty-six years on, I continue to defy every odd and expectation of my medical teams and of original diagnosis and prognosis. I have, from time to time, faced down death and beaten every single ailment that has threatened my life; again and again by God’s gracious mercies. Though each time comes with its own story and scars, I’ve been blessed with the ability to rise again and conquer something much bigger. You may be wondering what that “much bigger” looks like for me today.

To date, I have been in intensive physical therapy one day a week, for just about 2 years now. In a nutshell, the point of the physical therapy is to get me weight bearing as much as possible independently. The ultimate goal of the weight bearing is to qualify for total  double hip/total pelvic reconstruction surgery, and Baclofen pump insertion surgery.

These will be 2 separate procedures. Of the two, the pump insertion will need to be performed first by a neurosurgeon and adjusted to the right drip speed and dosage before the reconstruction can even be a attempted. The point of the pump insertion, is to help control the overall daily amount of negative spastic tone that is always present throughout my entire body.

Once I can prove that I can weight bear as much as possible independently, we’re hoping to be approved for the reconstruction and pump insertion surgeries. All of that is the ultimate goal of my current weekly visit to the therapy clinic. The added bonus of my current therapy plan is that in the meantime, while I learn to weight bear, I’m also learning to walk. It’s a skill that will be temporarily lost after the reconstruction is performed. However, the ultimate goal of reconstruction is walking as much as independently possible. So my learning walk now is actually preferred by all parties involved and very beneficial in the long run. Especially, when you consider the potential successfulness of the reconstruction surgery, and its overall outcome.

Presently, for the last several weeks I have been assisted in my goal of walking with the use of a hoist-like gait machine called a Lite Gait. And with the help of the machine and my therapy team, I’ve been taking just under 101 steps in every physical therapy appointment session. But it’s definitely quite a feat of difficult physical endurance work with each session as well. With every single step of mine equal to 2 steps of any able bodied person, at this point I have just enough stamina built up to go almost 3 laps around the therapy area.

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January 18, 2019: Using an E-Z Stand 1500 in PT. Independently upright for the first time in 2 1/2 years!! First time up in a stander in over 5 years!!

But, believe me when I say, getting to the point of using the gait machine anything but easy. I needed to first endure a grueling few months of learning to stand up for a prolonged period of time without becoming wobbly or floppy. We worked at the task of just standing up as straight as possible from January 18, 2019-July 24, 2019. And then, with the very next visit, on July 31, 2019, my therapist had determined that I was then strong enough to move on to using the gait machine for what he referred to as “weight bearing attempts”. No one, including me, expected me to start trying to take steps that day, or walk one full lap, let alone 2 full laps on my first day working with the gait machine. But I did!! By the grace of God, on day one, I walked 2 laps around the therapy area!! Equaling a distance of 252 ft total length and just under 101 steps taken, on that first day alone!!

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September 5, 2019: Up in the Lite Gait machine working on “uneven weight-shifting” on a skateboard. First time ever standing/balancing on a skateboard. Independently moving it back-and-forth one foot at a time.

 Every one, including was so surprised by my achievement in my session that day. And I must say it was a pretty amazing feeling, going home after that first day of using the gait machine. I was very proud of myself for having achieved beyond my goal that night. Since that day, I have continued to use the Lite Gait machine for the past 7 weeks consecutively. To date, I have taken a total of  562.4 steps in total distance of 1,406 ft. This total was as of Thursday, September 12, 2019. I go back to P.T. on Thursday September 19, 2019. Every week we add to my overall distance and step total by calculator.

We head  back to UC Davis Ambulatory Clinic on Halloween day. The goal of the upcoming appointment is to discuss my next steps towards total double hip/total pelvic reconstruction and pump insertion surgeries. I will have more information on what my next steps beyond physical therapy are, after my upcoming appointment at the clinic. I will post an update in this journey then. So friends, keep an eye out for updates on this newest journey I’m on. All updates to this journey will be posted under the category highlight: My Journey Towards Walking. So… be on the lookout for progressive updates!! But for now friends, I must close this journey’s first chapter here.

Until I tell my next story, may God bless keep you all.

 

My Household Has Grown By 4 Little Paws: Introducing Elliott!

Hey Friends!

I hope you’re all doing well as October has begun. Well, as I am sure you can tell by the post’s title, my family has recently taken on a little love of the puppy variety. On the 28th of September our family grew by 4 more paws. Our new little love is a wonderful 13 week old little male boxer puppy named. Geordin Elliott. We call him by Elliott, Eli for short.

So now our home has 12 sweet little paws stomping around it. As we adjust to our new normal of having 3 dogs in our house and have begun to sweet Elliott, who is our first male puppy ever, I am starting to realize how much different and quite hilarious it raising little male puppies v. females.

Elliott and I. He’d already been home 3 hours & doing amazing. September 28, 2019

For one, the dynamic of the pack definitely changed almost immediately when Elliott arrived home. Our 1st boxer, 2 year old Dixie Callaway was instantly taken by sweet Elliott. They became instant buddies. Dixie and Elliott play with one another all day long, from morning light until evening night. They seemed to just hit it off very well and quickly, so far. My little chihuahua mix Lylah, however has been…um… less than impressed by her new pack mate. Let’s just say she not his biggest fan. But, with each day we are seeing her slowly warming to him a little bit at a time. And that brings me hope and happiness.

Such a sweet boy! Elliott, night one, tuckered out from a full day of playing with Dixie.
Dixie and Elliott all tuckered out snoozin after a crazy fun first day together.

Dating Disabled: Our Story

Hey Guys!

So this post is gonna be just a little bit different from my typical posts. Because I have decided to bite the bullet and do something new, today I wanna share with y’all my personal experience in the world of dating.

So without further ado, let’s begin.

This is a story that I wish I could begin with the phrase “Once upon a time…” but I really cannot. Because you see, to truly understand how my boyfriend and I first met, you gotta go back to a rather disastrous time in my life. And that was the start of my 6 grade year at the local, typical level middle school in my area at the time.

See, throughout my upbringing, I was always apart of the mainstream school system. Only apart of special education programs for mobility issues related to having CP, and relatively minor learning disabilities. But for the most part I had a pretty typical schooling experience. That was that, I had attended the same school from 1st through 5th grade. And had the same 1 on 1 instructional aid all that time. So I didn’t expect anything to change with my next school year. Except that, I would be moving schools with the rest of the students that were my age. We would all be going from our small elementary school to a much bigger middle school located at the other end of town.

Having had my transitional IEP meeting earlier in my last week of 5th grade, as I said, I didn’t expect anything to unnecessarily change within the next coming year. In fact, I was thrilled to finally be moving on. To be honest, I was probably my parents only kid who was excited when summer ended and school started that August.

Boy, was I in for a rough awakening… As one week before school started, all the incoming 6th grade students, their families and any school district provided support staff, all attended a mandatory open house orientation and registration night at the school. As the night came to a close, my aid, whom we knew personally, had worked with for all the years beforehand, and I loved; she sat us all down and dropped a bombshell.

She said, “I plan to be here with you, Sammie. But it will all depend upon what my doctor says in 6 weeks when I see him.” “Ok…but at least for the time being you will be with Sam… right?” I heard my mom ask. “For right now, I will, yes. ” Completely overwhelmed by what I’d just heard, and absolutely confused, I started bawling hysterically. Suddenly my perfect, happy picture of my years to come, they lay shattered on the pavement. “First you make me take the bus, and now Angel is leaving me!” I shouted, making heads turn to look from every direction. “Oh sweetheart… I’m sorry. But unfortunately I may have to… For now though I’m not going anywhere.” And so that night ended on a not so pretty note.

And then school started that next week.

Completely oblivious with excitement once again, I was up 5 minutes before my 4 AM alarm went off. My bus was set for a 6:02 AM pick up. Which at the time that didn’t bother me. Because I was on the same bus as my childhood best friend, Maria. Who also happened to attend the same school at the time. And we also shared 2 SE classes.

So, for the first few weeks everything went as good as could be expected. With the added bonus that my auntie was actually the health aid at the a joining school, with which my middle school at the time was sharing an office. And so, being a slight an auntie’s girl, I was so much more comfortable and confident knowing that she was around.Things were going good for a while.

And then everything went haywire when after the first 6 weeks ended. Sure enough, my aid had been told to quit her job on account of her health at the time. I was devastated by this rather unexpected turn of events.

Now, you might be thinking, “but Sam, you had a heads up.“ And you would be correct. We’d had a heads up about the doctors visit and the possibility of her being given a certain time limit on to how much longer she could have been working with me.

But, when on an ordinary Friday, she came back in and said she needed to resign immediately, by doctor’s orders; it was all the sudden and shocking, overwhelming and devastating, all in one fail whack to the system. It was especially made much more difficult when, upon my arrival to school the next week on Monday, I was surprised once again with the discovery all of a sudden for a while I didn’t have an aid in school at all. For the first time ever, I would have to go it alone and go about my school days, (for the whole week), independently. I felt as though I had been thrown to the wolves, disguarded and forgotten about.

It would be found out later that my school district was as unprepared for me to enter middle school, as they were seemingly just as unprepared for my aid to make a rather abrupt exit from the position. And as you can imagine, this did not sit very well with my family. As because of my needs, I was entitled to a one to one instructional aid. Also, because of my needs, I required a one to one instructional aid in order to get through the school day.

So, to solve the problem, the district put me with an amazing long-term substitute instructional aid. Her name was Teal, at the time she was 24. And she truly was amazing and became one of my very best friends, during our time together. Her sister, Moriah, attended the school as well. So it seemed like a perfect fit and a win-win on all fronts. However, I found out very quickly that she too would have to forfeit the position…and soon. Because, upon filling the position, Teal was 4 months pregnant with a little boy, she later named Isaiah.

Shortly after beginning to work with Teal, I needed to move schools, from the traditional middle school in my town, to a much smaller elementary school way out on the outskirts of town. This school is mainstreamed kindergarten – 8th grade. And they also had a deaf and hard of hearing, (DHH) program within the school. The DHH program runs pre-K through 8th grade. And they also have a very caring and dedicated special education department.

So, that’s what made this school a sure thing for my family. But the “downside” of this great move was that, everything once again, did a 360 turn around… I was looking at changes in my entire school day and overall education plan. This included, new school, student body, teachers and faculty, a whole new IEP team (except my amazing A.P.E teacher, as he is and was the only A.P.E teacher for that school district. Even in present day.), even my bus route would have to change. With that I was not at all very pleased. And I struggled to actually accept it. Until much later when I began making friends.

But, I was extremely grateful for the one thing that didn’t immediately change again… my one on one I.A. Teal would continue to work with me until she could no longer.

Looking back now I’m more grateful than ever for my hours long 6:02 AM – 9AM Bus rides and late morning school breakfast days. Because, my bus ride was where I first noticed Alan. As I previously said the school I had moved to has a good size DHH program. Nearly all the deaf and hard of hearing in that school district end up in the school I transferred to. And at the time, my entire bus route picked up about half of the school’s DHH students in the program. With the exception of myself and the driver, every single other student was deaf to some extent. I felt at first like once again I’d been thrown to the deep end and told, “swim idiot!” with no heads up, help or instruction. Because you see, other than the alphabet, my own name sign, (given to me at birth, because my parents weren’t sure if I’d be able to speak after 5 weeks of being unable to breathe without a ventilator down my trachea.), and a few basic manners & “needs” signs… I knew absolutely nothing in ASL. Not to mention, I have very little use of my left hand, so I was just sure it was just impossible to communicate with much less to make friends with any of them.

So after I came home bawling to my mom and auntie about feeling so out of place, but explaining my desire to make friends and communicate with the kids on my bus that went to my school, they started sending me with a small note pad and suggested that I ask the kids’ teachers for help in learning conversational ASL. They also eventually purchased educational books for me to read and begin to to teach myself. I guess you can say that I kinda threw myself into learning and soaking up all that I could from that day. And it actually paid off. Because shortly there after, I became the one solely responsible to look after the little ones, until we got to the school every morning. And for an 11 year old girl, in wheelchair sucurment area of a bus, having to look after 5 deaf littles was no easy task; believe me!

Alan Michael is 9 months older than me. This meant he was just a year ahead of me in school. When I transferred to his school, it was the middle of the year. It was around early December and about 3 weeks from Christmas break. I was always the first pick up for our bus route and then the last drop in the evening time. Alan only took the AM bus. He was always the 4th to last picked up and always sat in the same spot. He would sit in the 3rd row from the door. And he always slid over to sit by the window.

Alan was your typical 7th grade boy. Except that, he was always very quiet and somewhat reserved. Unless you knew him really well he never really said anything in any way, shape or form. He hung out with friends playing basketball with them at break times. But overall, kept to himself during the school day.

Although not the type to pick on the other students or make fun of them. I was always getting laughed at and made fun of by Alan and his friends back then. I mean, you name it, they teased me about everything. And it lasted from the time I showed up to the school to the end of his 8th grade year. At the time I thought it was just him being a huge jerk. I found out later that he was just crushing on me super hard.

Anyway he and I rode the bus and were at the same school til the end of my 7th grade his 8th grade year in ‘06. He moved to high school and attended the town’s only high school at that time. I graduated 8th grade just in time to be in the 3rd class of freshman to get into the town’s new high school, completely on the opposite end of town from his high school. So we ended up losing touch with each other for about 12 years after both going separate ways for high school.

That was until December 2015. My parents and I had been attending a different church in the town for about a month and I’d found my way onto the Saturday night worship team. And eventually too found myself in a weekly ministry group called “Friday Night Singles” For me, the group was initially just something to do with my time on a Friday night. I always figured that doing something was better than doing nothing at home while my siblings always had something going on with their Friday night. And hey, at least it was always something positive that got me out of the house more. I never expected anything more than it being something positive to do with a Friday night. But, I guess, God had a much bigger plan…

Because during my 3rd night on the worship team , a guy, not at all hard on the eyes… With an athletic build, and eyes of forest green with a beautiful blue ring just around the iris, he caught my eye immediately. And from the moment I saw him, my mind was totally elsewhere. Completely unaware that the guy that was sitting catty corner from set up was in the same Alan with whom I’d attended middle school, that whole night all I was focused on was the need to know his name.

Little did I know, introductions would happen much sooner than I thought. Coincidentally, that night our set included the one and only song I know by heart in ASL. It is “Lift Your Name On High”. And just out of habit, as we sang it I was signing the whole thing. And low and behold, Alan noticed within seconds. Suddenly with the same thing on his mind, neither of us could get our focus any longer on the service. Both just had one another on the mind and couldn’t wait for service to end. Seriously, I cannot tell you what the service was about. I just wanted it to be over so I could meet this ‘hot deaf guy’ with gorgeous eyes.

Finally, the service ended. And before I got my things collected up, the next thing I know, the guy that I spent all service making eyes at had bee-lined his way straight for right in front of me. By then, my mom had come over to help me collect my stuff and get out to the car.

“Oh hi.” I say aloud followed by the slightest wave of a hand.

“Hey.” he said aloud.

Then started sign to say: “I saw you sign to the song tonight. I don’t know anyone else here who can sign. How much sign do you know?”

At this point I nervously laugh, and and then answer, “Oh, ah… very very little…”

“Oh… so what’s your name?” He asked.

Before I could answer, I hear, “Go ahead, Sam. Tell him your name.” Suddenly aware that my mom was still standing there. And she had been there for the entire conversation.

So I quickly finger spell my name: S-A-M-M-A-N-T-H-A, immediately following this with my name sign.

“Wait, didn’t you go to school at C.G.?” He asked. Completely caught off guard and instantly aware of his name, even though he had not mentioned it during the entire conversation, I quickly answered “Yes.” And with that, I sweetly said I needed to go and take care, before mom and I headed to the car.

So, that friends, in a nutshell is how Alan Michael and I first crossed paths. And also how we reconnected about 13 years later.

Honestly, I could go with the story. But then this post would be never ending and go forever.

At present day, we’ve been together for three years. We’ve had our ups and downs as any average couple does. But for the most part our relationship is pretty typical, and surprisingly very normal. And through it all we have been and continue to be each other’s whole world.

Days when I Hate Having CP!

It’s been a rough couple weeks, friends! But anyway, I’m still active on here. I promise I am not writing today to create a pitying or complaining session with this post. It’s just the reality of the disability community sometimes… Sometimes we just HATE our situation.

And yes, that’s perfectly normal and even ok. As long as we get the anger out in a constructive manner and don’t let it over run us. Yes, it’s ok to be upset with our situation. After all it’s normal. And we’re all human anyway.

So anyway hang in there with me y’all… it’s story time!

A very long time ago my auntie mama taught me a valuable lesson in one simple collection of sentences. She said this during my first visit to Disneyland in 2008, “a lot of things in the parks will be much more difficult for you to do while we’re here. Some things, you will be able to do and enjoy like everyone else. A lot of others however, unfortunately baby, there are things that you won’t be able to do. That is why we have planned for you more special time and other stuff more than we have for your siblings.”

Often times, this follows a giggle fit. Because I know that someone with us on the trip (or whatever), someone has usually either turned over a credit card for extra shopping time, or there’s something even more awesome than theme park rides planned.

I won’t lie, at times like that CP seems like the greatest thing on the planet. Because really, honestly who wants to spend the day, waiting… at times for hours in lines, for just one single ride at a theme park?? Sometimes however, when I can ride a couple of a park’s rides, there’s perks with that too. I mean let’s face it, on those days CP rocks…

Recently though, on more days than not, CP has really sucked! It’s really hard on these days to not be hard on myself. It’s days like this, that I know exactly where the day is going and how it’s evening will end. Those days often consist of relentless pain, followed by more failed or broken attempts at sleeping to conserve my energy, for whatever is going on around me; an event or occasion of some sort that I need to be up, and out of my bed to get to or be able to be involved in later.

On days like this, I’m in so much pain I could scream all day, literally. Oh these days… they are the days that suck so bad! Especially when, all I really want to do with my day is to be outside watching my dad and boyfriend, Alan, shoot hoops for hours out front. Pleasant days are the ones where the perfect end to my day is watching one of our favorite shows on Netflix or popping a DVD in the player…With which by the end I’ve fallen asleep in my boyfriend’s lap. With him sweetly and carefully shooing the dogs off the couch because I’m finally asleep. And at that, usually when I’ve fallen asleep next to him or with my head upon his lap I’m resting peacefully, comfortably and without spasms or pain; these are often the times when for the first time in hours, or even days, that I am completely relaxed and comfortable at all. All because, I am laying in the comfort and peace that comes from just his being right there. Very often, that’s what the end of a rather simple but pleasant day looks like for me.

OK…so that sounds bad like we hardly ever cuddle. When the truth is we cuddle and play around like children together all the time. We’re total goof nuts together. I swear, in a day, there’s no hour that passes that we haven’t made each other laugh. We love to goof around together.

But sometimes all the awesome times and fun come to a screeching and abrupt end… My EXCRUCIATING pain episode begins. Often it sets off because I have spent too much time in my wheelchair and need to go lay down in my bed.

And so, with that, my amazing boyfriend comes in to lay with me, ofttimes for hours just to comfort me and relieve the pain, even just a little bit. He does this at least twice a day for at least 2 hours each time. And Alan Michael does this so sweetly and patiently. It’s as if he just knows now…It is at times like that where I do not even have to express it. Often times Alan will just come in and sit or lay with me for hours, just to help get my mind off of it or comfort me by laying down next to me in my teeny tiny hospital bed. It helps that we have discovered that I completely relax when laying in his arms. And very often he does this without being asked or prompted by anyone.

It would seem lately that… days like that idealistic picture I’ve just given, (a few paragraphs earlier), are fewer and fewer, and far between. They are simple yes. But for us that’s a perfect day’s events and evening’s end. Those are what I call my “good days”. That is the ones that end in DVDs and sleepy eyes on the sofa.

Recently the days I’ve had, those are the awful days; the ones that me and my family would call my “severe days”. This comes from The severity of my specific complexity of the CP disorder. Over the years, countless medical professionals have described the level of severity of CP in my case as: moderately severe. Basically these two words are code “You’re a miracle case. You shouldn’t be able to do as much as you can as well as you can.”

But on the hard days, even that knowledge of the miracle I am does not comfort me. My comfort on these days, to that I will say this, I am very grateful and blessed that I have such a wonderful boyfriend and family, who all face my “bad days” head on and ride it out with me.

So even though I have some pretty bad days that come with having cerebral palsy. At least I will always know that I have my amazing boyfriend and family to walk through all of it with me. I am blessed because I don’t walk through any of my days alone.

Be blessed in this coming week, friends.

God bless y’all!

One Minute We’re Enjoying The Bay Area, The Next We’re Evacuated!

(Written: November 13, 2018-February 2, 2019)

Hi Friends,

Let me just begin by saying that the family, including the puppies Dixie and Lylah and I are all safe, happy and healthy. We’re home (in Oroville California), waiting for all the smokiness outdoors to clear before we can do many outtings as a family again. But oh my, do I got one crazy story to tell you all.

So this one will chronicle 2 significant events that have recently taken place. One is our yearly Abilities Expo trip that took place this past 10/27/2018 – 10/29/2018. And that in and of itself had its own set of unexpected moments. But some of the “biggies” from this year were discovering new equipment that could benefit both me and my family as caregivers. This year we discovered the U-VEST!

Y’all this vest is AMAZING! And as a person who, HATES any kind of lifting/transfer aides strapped to me/being placed in anything of that sort, the fact that even like this device is HUGE! But that’s not the half of what this vest can be used for. It’s uses and adaptations possible when using this product are endless!Want to know more about the U-Vest? Learn More. Want it for yourself, a loved one or another care provider? Shop Here.

So, overall this year at the Abilities Expo 2018 was an awesome experience as it always is. This year we traveled as we always do, very early Friday morning. Friday is always day one of the event. And we almost always miss the majority of events scheduled for Friday when on the way down to the Bay Area. But this year we made the event on Friday morning, excitedly pulling up just as doors had opened! All because we began our day down just before sunrise that morning. It was brutal on me to be up and going that early, but I didn’t care. Because for the first year we had made it to the event on Friday and on time! I was so ecstatic. This would also make it so that we could take our time more and spend more time enjoying the time in the Bay Area.

Day one of the expo is always spent seeing how each station is laid out and seeing what they all have on offer for the event. Usually while doing this, I run through like a madwoman from set up to set up grabbing any handouts I can to show my mom later that night when we all would sit down together. It was nice this year to not to run around like a chicken with my head cut off. I was actually able to spend time asking questions at each of the stations pertaining to whatever equipment they were showing. I’ve never really been able to do that at this place before this year.

As we wrapped up for day one, dad asked me how I wanted to spend the rest of our day. Excitedly, I answered with an evening in San Francisco. I could tell that my dad was tickled by that answer, as almost immediately he and mom began planning for a major surprise later on that evening. They had planned for mom & I to climb in a cable car and ride 10 incredible minutes up a street of San Francisco. The experience was so incredible. It was undoubtedly a challenge for me to keeping myself in, let alone stable and upright. But despite the challenges, I loved the experience of riding in an authentic city cable car with my mom. It felt so amazing to once again Break down the stereo typical societal responses which tell people like me typically that doing something as normal as experience in a cable car ride should not be able to be within my grasp. To break down that stereotype was amazing and the fact that I was able to make that memory with my mom was even more incredible. So after the cable car adventure we all piled back into our rental truck and made a small little jaunt downtown to Pier 39. This year me and my mom spent most of our time checking out the Christmas ornament store at the end of the pier and we all as a family experienced a roller derby team dance performance. Which was if I’m being honest pretty awesome to watch. But being that it was San Francisco even that got to be a little… let’s just say interesting. As our Friday night came to a close and we all went back to the hotel room exhausted but looking forward to the next morning which would be spent at the expo. This would be the day when I would be shown more and more things about the U-Vest.

Saturday would also be the day that I would watch my friend Chelsie Hill, and her wheelchair dance team The Rollettes, dance their Abilities Expo 2018 dance routine. And I must say, like always, these hard-working, gorgeous ladies rocked it! So with the most important things I wanted to see and do on Saturday done for the day we retreated back to the hotel for the afternoon. After going and going for quite a few days we all just decided to chill through the afternoon and spend a day at the hotel. That evening however was one of the coolest evenings I’ve had in a really long time. And here’s why!

After some much needed wind-down time, it was decided that I could go relax and have some fun time in the hotel pool that evening before it closed for the night. Mom said she’d meet us down shortly. So with that, dad and I got our suits on and headed down to the indoor swimming pool room. After some stretches and balancing workouts, emulating what I had done in physical therapy in their pool over a few weeks at the time, I felt it was time to let my muscles relax a bit. So with that we made our way to the hot tub just beside the pool.

Just as I got settled in the hot tub momma made into the room. As she walked in the water and got settled, dad ok’d me to “show off” to my momma all that I have learned in physical therapy over the past two weeks at that point. And just In showing my mom how I had learned to independently bare just a little bit of my own weight standing on my own 2 feet with nothing surrounding me I manage to stand up and let go of both my parents hands ,(at separate times of course). but more than four times that night. And the last time I attempted it using my mom’s hands as a guide a stood straight up independently for just seconds. When I allowed her to release her hands from bracing mine I managed to stand independently for about 25 seconds for the first time in my 25 years of life all by myself. And I did so independently of any of the hot tub walls or supports in the walls. Yes people I stood up in the middle of water without anything surrounding me near or far to hold onto you or grasp in any sort away. For about 15 to 25 seconds for the first time in my life ever supporting my entire body weight on my legs for the first time in my life ever! It felt wonderful and I was so proud of myself. And as you can imagine, this is simple action of 25 seconds of standing of which my parents have never seen without any kind of support nor had I ever felt without any kind of support, brought my parents to tears. Needless to say we ended our second to last night in the Bay Area on an extremely high note.

Sunday, October 29th, was our last day in the Bay Area this trip. Everyone got up looking forward to what the day at the expo had in store. But as we prepared to load the car, everything quickly came to a very abrupt halt. As dad headed down stairs for the first time that morning he returned very unhappy. Because as we had been placed on the third floor of the hotel we would very unexpectedly discover that the only elevator on campus was out of order for the day. With this knowledge my dad returned very quickly back up to the room where my mom and I were waiting patiently to be loaded out to the car. Needless to say Instead of spending the first five hours of Sunday at the expo hall at the event we were trapped up on the third floor in our hotel room for five hours. And with me in a power wheelchair upstairs unable to get downstairs and turned it into from a lackadaisical problem to a state of emergency for the hotel staff. Finally, by like 6 o’clock that evening we were able to get downstairs and check out and make our journey back home with a few very special pitstops in between. Late that night we all made it home exhausted. But little did we know that would only be the beginning of our travels. We would only be home (from the event) for a week before we pack up the car the family and the dogs and need to be emergency evacuated from our home.

I would wake up on a normal every day Thursday morning planning to prepare to go to therapy that morning, when we got a frantic call from Therapy Office stating not to come in because my PT had to emergently make it home. At this point I am oblivious to what is going on in the nearby town of Paradise. Not thinking much of it I just when about the rest of my morning without thinking anything out of the ordinary. Family emergencies for my therapy staff were not often but also not unheard of. So I didn’t think much of it.

That was around 10:30 AM November 8, 2018. By noon I had known that something was happening because in all town the entire city was filled with smoke. And it would remain this weird way for about three weeks on end. by 11 o’clock that night my dad wakes me up frantic from my bed. And says that on emergency regulation we are leaving. Evacuation warning had been called but no mandatory evacuated. Unless you needed In home medical support services. Then they called for a mandatory Medical Evacuation.

So exhaustively we loaded up the car and everyone, including the pups, at nearly midnight and drove to safety. We drove to a nearby church that was acting as a Red Cross make shift shelter for anyone who needed. We would spend the night settled in the church and needed to spend most of the next morning there as well until the (now mandatory) evacuation order for our area was (temporarily) lifted.

We would be cleared to head home around 4 PM that evening. But we wouldn’t be settled at home for more than about 36 hours before we again would have to pack up the car, the dogs and all the family to head out once again. This time the threat would be that the fire would head straight into our town. So on Friday evening, upon mandatory medical evacuation once again, we would head out. This time we headed straight back for the town of which we moved from. And we would stay there for a night. But once deemed safe to head back home we did. And for the record, many churches in our area prayed over the half of the windswept fires. The fires would never advance into our town or over our homes. Praise God!

So with that, Monday night we slept safe once again in our own home.

From those first few very precarious days to present day, mine and my family’s hearts and prayers are with the survivors of the Paradise California Camp Fire devastation. May God bless and keep you all always. Please keep those most affected by this devastation still close in your prayers and thoughts.

As many of them are still struggling to piece together with the little that is left of their previous life. And please keep them in prayer as they all gather the strength to rebuilding remake the life these folks once knew. As in the coming months and years, rebuilding and remaking their lives will not be easy, but the greatest thing we can do for families like this, helping hand when we are able.

But the greatest thing we can do is actually pray for their comfort wherever they are right now, pray for their prosperity, pray that they are comfortable and cared for. And also pray that God keeps a loving gracious hand upon them in whatever their newest endeavor is.

So my point is, of all the things that we could do the greatest thing we can do is to pray and leave our worries for our friends and communities around us in the hands and at the feet of Christ.

A God Given Compelling Tonight

🎶 You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There’s not a place where I’ll go
You’ve not already stood🎶
~Lauren Daigle (“Trust in You” Bridge)

🎶Each step I take
You make a way
And I will give You all my praise
My seasons change, You stay the same
You’re the God of all my days🎶
~Casting Crowns “God Of All My Days” Bridge)

Friends, there’s a point in Every Day where Songs like these become more than just words on a page or lyrics to song or around the radio, or just something we repeat in church every week. At that time I reach every day, these words become more than just words. They become passages by which I live. And that’s one of the best ways you can get through the day is spending some time worshiping The Father, who, works ALL THINGS for our good.

NO MATTER HOW HOPELESS CIRCUMSTANCES MAY SEEM. And guess what y’all… IT’S OK TO SAY “Lord I don’t know what/how to pray for in this moment.” And then if your next move you find yourself in is start bawling In the Arms of Jesus… THAT IS ALSO ABSOLUTELY OK! HE is OURS. And WE are HIS CHILDREN.

As I sit here, an overwhelming compelling to share this tonight. Because I feel that there may be someone tonight who is coming down on themselves. Whatever/whoever’s in that situation, this post is for you.

For The Word says it best:

Psalm 126:5 & 6. Which says,

“Those who sow with tears
will reap with songs of joy.
Those who go out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with them.”

So friends, I really hope this post serves to hit some hearts tonight. And may you all have a blessed restful night tonight.

Good night friends!

❤God bless.

A once-in-a-lifetime day at Harley!

Hey Y’all!

First off, let me preface this by saying the access we were granted in order to test drive a Harley product does not happen the way it happen for me very often. In fact unless you have a set of guys like the ones my parents worked with it hardly ever happens this way. And… What a gift! Just to be able to test ride shotgun on a Harley product… Also, while Harley sales Vanderhall… It is not necessarily a Harley product. Stephen Hall did design a very fun and expensive, product! ( Hint: I could buy another Permobil m3 power chair at that price, just give you a price point.)

And so, by now you’re probably wondering, “how did you do score a ride and a 2017-18 Vanderhall at Harley?” A few words, dad’s idea, my story (briefly), & a team of guys that want an experience of a lifetime for me. Now for a little backstory.

So let me again say, all of this was dad’s idea. But one of my pastors is a Harley Rider and when he got wind of this he was all game and wanted it to happen for me so freaking bad. Gotta love when people around you want new experiences for you. So now on with the backstory. Anyone who knows me personally knows that I am a go-getter and a thrill seeker. Even though I am wheelchair-bound, I’m always my parents first child to want to go on every ‘flip you upside down’ roller coaster, every “Drop Zone” ride, I am definitely their thrill seeker child. And this goes for my godparents as well, Aunt Stormy & Uncle Charles. They all know new experiences or up my alley and I will try anything once. Dangerous? Yeah sure. But, what isn’t right?

So that alone is or would be a good enough reason to stick me in a vanderhall roadster right? You would think. But here’s the real reason. Beyond on the motorcycle was never something that entered my mind until around the age of 9 or 10. Around that time is when one of my other uncles bought himself a bike. And although for years he talked openly and excitedly about taking each of us one by one out on it, nobody really expected how risky and dangerous being on a standard motorcycle would be for me. Somebody who had at the time absolutely no trunk support in my abdominal muscles at all. But for the longest time he had hoped that it would just take a seatbelt and lateral supports, to sit me behind him upon his motorcycle. But it was never that simple. You see about eight months before the purchase of the bike came a devastating blow medically for me that devastated the whole family. 8 months before the purchase of the bike, my Mobility had started going downhill so like with anything we went to the clinic in Sacramento at Shriners. They’re at that appointment I would be diagnosed with something called Sheuerman’s kyphosis & scoliosis. And is severely dislocated left hip which left me without a ball-and-socket joint and my pelvis on the left side and no head on the femur for the left leg. There’s medical blow came with many uncertainties. Many lost dreams and hopes. But most of all a whole heck of a lot of physical pain. And these are two medical problems I still struggle with to this day. So Mom and dad knew getting on a Harley standard motorcycle was a very dangerous idea. But that did little to deter my father of course. After taking my mom to a medical appointment for herself nearby our home, my crazy father gets the idea to just stop in and see what it would take 2 get a ride on something similar to a motorcycle for me to experience it for the very first time. Something I thought I would never experience not in a million years.

So apparently he walked nonchalantly into this Harley shop near home. And what does he do? He begins to lay out all of the ins and outs of why this would be the ride of a lifetime but why also it would be dangerous on the standard bike. So you guys I don’t remember the other one’s name but one of them is named Steven. He and his buddy, they say well we have this vanderhall Roadster we could put it in. And they lay out everything it’s got seat belts and she basically be down in it. Upon seeing this beautiful boy toy of which cost about the same as a piece of medical equipment for me… My father comes back to the car and says to my mother “I’m putting our daughter into the freaking Vanderhall Roadster.” My mother of course was like this is “you’re nuts!”

So they get home. And totally play it up. I mean they played up to the point where I’m like, “okay you have an appointment tomorrow again…??? But okay sometimes it works out that way.”

Let me stop right here and say Steven and his guys are some of the most genuine guys. They are some of the kindest men. And all they wanted in that Friday was to see a smile on my face. They are really really good guys. Thanks for everything you did for me to the guys at Sierra Steel Harley! You guys gave me a blessing in a dream. Thank you again!

So anyway, we get to the nearest Harley which Sierra Steel Harley is the closest one to us. And still until we pulled up in their address I was clueless. When we pulled up I thought and kept saying out loud and to myself, “if my mom doesn’t know, my dad’s in big trouble.” The reason for the commentary was I have been told prior to this visit to Harley, the only reason we would go to a shop is with intent to buy a bike.

Never in my wildest dream did I the possibility of counting on a team of three guys and my dad pulling together to make a dream come true just for me. But they did and they were amazing about it. To be honest, getting out the car and if something was going to be different. Because, just like every time before, my dad pulls out his phone too take pictures or video he did that this time too. So that was a dead giveaway that we were there for some different reason. So with everything I was doing in that moment caught on video and me realizing something was up that he wasn’t expecting anything more than something I had never done, we proceeded inside the Harley garage. For the life of me I cannot remember the other name of the other guy who wanted to be in on this once in a lifetime moment in my life. But whoever you are you made this just as possible as Steven and thank you so much for your patience and amazing job. We walked to the next open Door in the garage which was they’re back and of the establishment. And my dad just stops when Steve walks up. Confused I start stupidly giggling. Steve bless his heart, was completely unfazed by the nervous giggling. Because you knew I had reason to be nervous. Still oblivious to why we were at the Harley garage, he asked, “do you know why you’re here?” With the giggling again I responded “no.” “Well before I tell you… he said stunned that nobody had told me yet, what would you guess the reason for you being here?” Reiterating once again that to buy a bike would be the only reason we would be in a Harley shop, “well that would be a good guess, but uhm, not necessarily.” “I have a roadster for you to ride.” Steven said. Shocked and surprised, I said, “ok.”

From there, like a whirlwind, the next thing I know I’m sitting in a Vanderhall roadster car about to experience something I hadn’t ever. The first 15 minute, around the block run, Steven took me. That was the coolest I thought I’d ever experience. But then Steven pulled up behind the garage and switched places with dad. And then, my dad & I took off in the roadster up the freeway! It doesn’t get much better than that people! Watch how it all unfolded.

WORLD CP DAY: SATURDAY, OCTOBER 6, 2018

So mine & my family’s day today was to say the very least, emotional because, just a week ago a friend of ours passed away suddenly after just one day before my parents saw him and his family at church a get-together.

Nevertheless, today marked the 2018 World Cerebal Palsy Day. As a way of celebrating this occasion, I wrote a passage off the top of my head this morning and posted it to my personal Facebook page. I wanted to post it here to share with all of you. That is, if there’s anyone out there still reading the posts I place upon here.

The passage is of my own writing from just this morning. It reads as follows:

Today marks 25 years for me of life with cerebral palsy. It’s a life that takes and an amazing amount of Courageous colossal effort to do absolutely everything.

It is a lifetime of more hard days then easy ones, for everyone involved. For the whole family life is difficult & very often cruelly unfair.

We work SO hard for every single movement in 100s of hours monthly in therapies just to accomplish simple tasks that so many individuals take for granted.

Hospital stays, for so many of us who live with this condition, those are never really far from the family’s radar. Because, for example, every “common cold” could go down to the lungs within a couple hours.

Pain for us, is a very real and very all-too-common thing. So many of us suffer from it. And suffer very unfairly from it. This requires us to take hundreds of thousands of nasty pain medication dosages per year. Time & time again, just to get what we need our caregivers stay on the phone for hours, sometimes crying to a pharmacist just to get their kid out of pain. It is a very real reality for our families.

Therapies are constant in this life & of all sorts are a weekly reality. And very often last hours per visit. And then the exercises whilst needed & necessary, they often leave us exhausted by the end of every visit.

So, the next time you’re told that someone has CP, DON’T FEEL BAD FOR THEM OR THEIR FAMILY, instead , I challenge you to talk with them and treat them as any other person in that space. Because we all need to consider just the amazing feet each family member must go through to live the lifestyle in which a family like mine lives. Cause let me tell you the inclusion means everything!

I hope the above passage of which I wrote myself, serves to empower so many families around this world, coping with this condition.

As so many that have followed this blog over the years know, from reading my posts, cerebral palsy IS NOT A DISEASE. Rather the condition is a neuro-muscular disorder acquired before, during, or after an infant’s birth. The condition is caused by a prolonged lack of oxygen to the brain of an infant. My family has long speculated that mine occurred due to traumatic happenings after my time of birth. But because I was a premature infant born at only 30 weeks gestation, and a twin… (As most of you know by now, Savannah is my twin and she is able-bodied. She has no lifelong negative effects of our prematurity at birth.) Many specialists have speculated in my case that my brain injury most likely happened due to prematurity, high risk pregnancy, or traumatic happenings due to loss of oxygen sometime in my NICU stay. But in my case, the different of cause of my cerebral palsy has never been determined.

To define cerebral palsy for you it is as follows. Cerebral palsy is brain damage caused by lack of oxygen at near or during the time of the birth of an infant. Now, while accurate, that is the definition put into my own words.

If you would like to read about my personal diagnosis day, please click My Story.

And to all of my readers and followers out there in this world, happy world CP Day, Saturday October 6th 2018!

God Bless!

Until Next Time,

💚 always, Sammantha

Another Year Begins + More.

Ok, finally back at it!

Hey Everybody!

So the last I updated it was a post on World CP Day ’17. And the one before that was an update I did on my since healing from the stent I spent in the hospital over the 2016 holiday season. To read about that please go to the “Life Since Healing” blog post.

As I lay here on Wednesday March 14th 2018 watching my babies, the puppies sleep, so many things come to mind. The first of which being that since moving things have settled quite a lot for me in a lot of ways the way it’s supposed to I feel like. We moved where we live now in July of ’17. So we are fast approaching on a year of being in this house. We moved in shortly after we were blessed with our oldest puppy Lylah Rose. Shortly after moving into our home we were blessed to find breeder in West Sacramento who we received our purebred boxer puppy Dixie Callaway (pronounced like Callaway a city in Georgia), from. Since being blessed with the puppies a lot of things have happened. My family is in the process of getting me scheduled for a baclofen pump insertion which will be done in Sacramento California at Mercy Hospital.

I’m still waiting on the bill of my new power chair from Numotion Medical Equipment supply in Roseville California. So because we’re waiting on a final fitting date, on which I can bring it home I haven’t received my new wheels yet. I have continued to support and be part of many different Outreach Ministries around our new town. And on a weekly basis I go to two different churches services. And I wouldn’t have it any other way. We were just seen by Regional Center representative physical therapist who is going to put through paperwork for different equipment that could help me live a more independent self-sufficient life in my home.

And for all of these things and so much more I’m so grateful to God. Recently I went to my sister’s home to visit with all my nieces and my nephews. That was fun and very eventful as I’m sure you can imagine reconnecting with my sister and all of my siblings who live just one town over from me now and their young children was a blast! Those visits are so far and few between now that when I go I cherish every moment spent with all my littles and other family members alike.

There are so many good things coming down the pike for me. And I can’t wait to share them all and more detailed posts about about all of them so stay tuned…