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.

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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 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…

World cerebral palsy Day 2017 (10-6-17)

Hello again to all my readers & followers. For starters I wanna say, Happy World CP Day 2017! Officially it was celebrated yesterday. World CP day is celebrated in October, on the first week in October every year. While CP awareness month is celebrated in the month of March. Furthermore,National CP day, celebrated in the USA on March 25th of each year.

Now don’t misunderstand me, just because I use the word celebrated does not mean that cerebral palsy is easy to live with. This disorder is a very difficult on the person that has it & their families and friends. I’m just a person who most describe as having a bubbly positive personality. Most of my friends & all of my family would say so anyway. I like to think it’s true. Because when I was recently in the hospital over a month last year, my family would visit the hospital and ask me how I was doing I would always respond with something to the effect of, “not great.” I apparently never had an answer like “horrible.” Even when I was having terrible days in the critical ICU. I apparently always kept positive outlook. and apparently even though most of my days are crappy, I always have that sort of attitude toward my circumstances.

But, if I’m being honest with you all and myself, I have to say I truly believe that was and is the grace of God working in my daily life than and now. That’s why I’m able to approach my circumstances so positively. My point is, life with CP is not easy. But life is not always about circumstances, it’s about how you can deal with those circumstances. You can either choose to approach life and circumstances with negativity and depression or you can choose to approach it with happiness and hope.

Life Since Healing

Hey & welcome back readers & followers. For those who have ben reading and following since I began my Mitrofanoff Journey all the way back to January 2016… You know that that procedure unfortunately was unsuccessful. What’s more,it led to a host of complications that were nothing short of terrifying for both me and my entire family. The two most serious complications were c-diff that had engulfed my whole intestinal tract and sepsis that had reached my bloodstream. To read all about that and how I survived it by the grace of God, please read the Unplanned. Unexpected. Unforeseen. blog post. I have been as healthy as I can be since all of that nightmare ended. I’ve only had to have one procedure since all of that ended as well.

So, I know you are wondering so I’ve been since everything has finally healed up when life finally seem to iron out a bit. Well everything got a little smoother like I thought it would. But as soon as that storm blew over back to the same old craziness with a few added sprinkles of even more crazy. No I haven’t yet reached my goal of going back to school in order to get a degree in general education. However that is still my goal. My mom and dad and I have moved to a new house in a new town.

Now we have 2 new puppies. Lylah Rose, (Pronounced ‘Lie-luh’) is my Pithuahua (Pitbull Chihuahua) mix. She is my tiny little partner in crime. I take her everywhere I possibly can. We adopted her on Father’s Day weekend. And she’s been the light of my world ever since. 🙂 But then, I was blessed again… Dixie Callaway, named for Callaway, Georgia. She came into my life. She’s a gentle-hearted, sweetly clumsy, purebred boxer. She’s the family cuddlebug. We plan to service train Dixie to eventually be able to be a service dog for me, so I can become more independent. 🙂 My puppies were born 15 weeks apart so my mom calls them my Irish puppy twins. Lol. 🙂 They are my babies and my whole world.  My Lylah RoseMy Dixie Callaway

Both dogs are cute & very sweet and they sure do keep us on our toes. they are on the go and busy from sunup to sundown. But they also bring a family so much joy and even more love than we could have ever imagined possible.

As for me, a lot is changing, the whole family moved out of the house I grew up in. Now we live once again in separate homes. So I now live in my mom and dad’s new house, in a new town. My aunt and her family lives 45 minutes from my house in a different town. Savannah &her family the only ones who still live in the town we all grew up in. I won’t lie, adjusting to a whole new town & new house, hasn’t been easy.

But, with the move has come a lot of opportunities for possibly regaining my independence. For example, by Christmas I’ll be receiving a new power chair. And around the same time, I am having a Baclofen pump placed in my back. The purpose of which is to reduce full body spasms all over the body. my family and I I hope that this will reduce spasms and pain related to the spasms. The hope is that if the spasms and pain are reduced, I can once again start bear weight to possibly take a few steps to walk with the help and use of a gait trainer , our greatest hope however is that I will be walking short distances in a gait trainer or on a walker by the end of the year! 🙂

For these & many other things, there’s only one thing I ask, please continue to keep me in your prayers and positive thoughts ! I will update as often as I can. Which lately has not been very often and I apologize for that.

♥always, Sammantha

Unexpected. Unplanned. Unforeseen.

Hello to all of my followers!
All I can say is 2 (ish) months is way too long to not post! But I really honestly couldn’t, not with everything when it was happening. So let me start by backtracking all the way up to about 2 days before Halloween…
By this point we were given Halloween as my hospital admission day. Even though we’d started my bowel prep at home, the decision was made to admit me to the hospital ended up being 1 whole day early, because Dr. Kurzrock wanted my ins/outs monitored. The reason, as we would learn later, was that the goal was to induce diarrhea… Worst 24 hours of my life… or so I thought. Little did I know there was even more “worst day of my life” moments to come… And so just 12 hours before surgery I achieved my goal bowel prep torture ending. “Thank God!” I thought. I had achieved the goal with the doctor wanted given my history.
So I was happily sent to bed with complete and total renewed hope that my life would be better changed forever on at 10 o’clock a.m. November 2nd 2016. Because by this point I had no reason to believe that my outcome would be any different from my good friend who and had it done five years before me. Everybody lay down as happy as could be. Nobody got any sleep that night. Besides maybe my roommate.
Urgently at 4 am I called my sister Savannah (my twin). She an our auntie made provisions for the others and our baby brother and then began the journey to be with me that morning. They walked in just before the prep team came to get me and exactly 8:30 that morning. As I was being wheeled to surgical prep the entire floor of nurses had a grin a mile wide on their faces, because by now the rare surgery had become popular topic among the nurses on the floor….

Because normally a person my age does not know about nor goes in for this kind of surgery… And they turned the corner off the floor with me as I hear from about 10 mouths “Good luck!” Mid way to pre-op we catch up with Dr Kurzrock (aka “Red-headed Crazy Man”). His very words, “Hey sweetheart. “Are you ready?” Shaking my head, i said, “Yes. But last night was absolute torture I did not sleep.”
Finally we make it to the “Children’s Surgery” pre-op ward. And whereas the average person might think that my nerves were put at ease by the decorative walls…Wrong! All I could think was, “Game on!” And “Savannah & Auntie please don’t go Anywhere!” Even though I was transported in hospital bed that I’ve been in for at least 36 hours of this point I could not find a comfortable position to save my life. It wasn’t until my sister had asked a nurse if we could watch a DVD or play a board game or something that I was finally calming down… Because the movie Savannah picked was a child favorite to both of us. She picked “Remember the Titans”. But still my nerves were unsettled. The pre-op nurse said my surgery was to begin by 11 a.m. and that we would have to hang in there for about an hour in this little curtained off cubicle. Besides the movie that is what I remember of the entire hour we had to patiently wait for me to go back into surgery. The only other words I remember Dr. K saying before taking me back, was “If there’s a problem with her appendix I will just close her up.”
By this point my mom and dad were also by my side. The doctor said his piece, I signed papers, my mom, sister, auntie & dad prayed over me & for God to work through Dr. Kurzrock. And I was wheeled to the O.R. Finally, by the grace of God my nerves were put at ease. How I know this is true is, with my last surgery which was Orthopedic in nature, I could remember exactly how long it took me to be knocked out with the sleeping gas… but this time I have no memory of even that…
I knew I was in the more than capable hands of the best person in the state to do what I was asking him to do. But ultimately I knew that I was in the comforting Everlasting Arms of my Saviour and Father in Heaven Jesus Christ. And with that knowledge, I was much more than a little comforted laying to be operated on.
After several hours of surgery, I woke up to a team of several people transferring from the operating table back to a hospital gurney. All I remember from there is asking if my catheter had been placed and requesting to be in the immediate eyesight of my sister and my aunt. Reassured by the people transferring me that yes I had “a catheter” placed, we wheeled me from the O.R. to recovery. Unaware of what I was about here I was happy to hear that a catheter been placed. Once in recovery, my aunt and my sister were there both the smiles on their faces and on either side of the bed. I immediately saw a balloon that said “God is good all the time.” Confused by the happily relieved but concerned look on my sister’s face. I eagerly (but still groggy) I asked her,”Was surgery successful?” The million questions in my head came to a screeching halt, when she answered. “No. It didn’t work.” They tried everything but the procedure was unsuccessful. He even came out to us all surgery to get permission to try & use one of your fallopian tubes as the canal because your appendix was flipped on its head, losing blood flow and was dying.” …Not to mention he was concerned because my appendix was higher in my body then it was supposed to be. She continued, “we gave them permission to try and use your fallopian tube. He tried and tried to thread a catheter through it he even tried an infant or a preemie catheter, but it just would not go through no matter what he did. Your tube was beginning to close on one side. I’m sorry Sammers no matter what he tried… and he did try… the surgery failed. But the good news is he removed your failing appendix, and the closed ended fallopian tube.”
Hearing all this I couldn’t believe my ears. Something I had researched for over 10 years and done my research on doctors in state and out of state, all the countless amount of paperwork, and reading research I did went down the tubes. With what felt like one swift kick to the heart, my life changed, but not in the way I had hoped & dreamt it would. Beside the question of, “what do we do now?” my first, and most important question was, am I infertile?” Because as young lady in my early 20’s… the one thing I’ve always wanted besides my independence is to be a mom. For as long as I can remember, I wanted to be a mother. I was always the one playing with baby dolls & insistent on getting real baby clothes to fit 20+ inch baby dolls. I would get outfits in the real baby section at Walmart complete with little socks and hair bows that matched the outfits. I even took a doll everywhere with me from family get-togethers to the hospital for every stay I had. And the wardrobe had more baby doll clothes in it then I brought with me to wear in the hospital. Because I was obsessed with playing doll dress-up on my down time in the hospital as a kid…. so in that moment silently I was worried about my dreams of becoming a mother being squashed forever…until thankfully the words, “Oh yes honey, you will still be able to have children.” Auntie said immediately when I asked about my fertility. But still, in the next breath I was heartbroken. Because I was unsure where to go from here. I always thought, that this would be my only catheterization option. I never knew of this option I always thought that catheterization for me would be a hopeless dream of someday achieving complete and total Independence in the area of using the restroom. But when the option of mitrofanoff presented itself onto the table of options, quite honestly I think my whole family breathed a sigh of relief. Because just the option meant the door was open for a less confusing less frustrating process of learning to catheterize myself. But when the surgery failed, I know my whole family was disheartened. But staying ever positive & filled with optimism, Auntie said, “Baby this is not the end of the road. When you get better we’re going to continue this journey. ” “So we’re back to square one…” I said. “No, we just need to rethink this path & make a plan. We’re gonna start by looking to God for His guidance & we’re going to pray.”

So at around 5pm they took me back to my room in the surgical intensive care unit or ‘SICU’. Honestly, I don’t remember much more than that initial from surgery day. The next few days after my failed mitrofanoff procedure, they were filled with me trying to climb uphill from what became a very complex appendectomy. Internists and interns had gone from being very interested in my case because of its rarity, to falling away.

But slowly, I pulled myself together & about one week later on Thursday I had gotten well enough to be discharged from the hospital. And aside from being told I contracted C-DIFF a common hospital-borne virus, whose bacteria is normally occurring in in the intestine as it is, I was ecstatic to be released from the hospital. In fact we were told that I was a carrier for the virus but not to worry about it. But we would stay in the city another 2 days just to be on the safe side. Two days later and I would slowly come out of the hospital aches and pains. This meant we were finally able to make the journey home after nearly two weeks away from the family. I was only home one week until everything flipped on its head. As I sit here typing, I am really struck by the struggle it’s been to retell this part of this past leg of my journey. It was certainly far from easy. I never imagined I would go through something quite so dramatic. Something that would take me on a roller coaster ride. One that would time and time again make me wonder if I would lose my life.

Everything started to go downhill days before Thanksgiving. Two days before Thanksgiving, I began to complain frequently of pain near my incision site. We knew I’d still be quite sore from the surgery that had just been done. And so nobody was really alarmed by the ongoing complaint of pain. That was until very late Thanksgiving night.

This is where the story takes a very hard time for me. This is also where I realized very early on my story takes a turn it’s similar to a scene from the movie Miracles From Heaven. Late Thanksgiving night after being laid down for bed, my stomach pain increased and I could not get comfortable to save my life. I had a fever that begin to rise and break rise and break at will. When it would rise I would sweat until the fever would break and then i would shake. As the night went on, my skin got paler & more clammy. Around 3 a.m. my stomach pain got unbearably worse. I thought over and over I would have diarrhea but I couldn’t go. That was until about 3 hours later around 6 a.m. when I could not be removed from the toilet because I could not stop going. In the midst of this I was losing consciousness and muscle tone will still lose that I was not able to even hold my head up. By 10 a.m. things were taking an even deeper turn for the worst. 10 a.m. my mom tried once again to medicate me with normal everyday pain medication. Of which I immediately threw up all over my bed. But unlike the rest of the night prior, this throw up was dark mud black in color. By 11:30 a.m. my dad and I were well on our way to or local ER. I barely remember the trip to the ER. Because the whole ride there I was going in and out of consciousness. There are very few things I remember my initial day in the ER, but the things I do remember or very big and significant moments from that night. The first thing I remember is being so dehydrated they couldn’t find a vein to stick an IV. But that would remain true throughout both up my hospital stays from the last weeks of November through January 1st. No matter how hydrated I would become they would have difficulty finding of a no matter what. The next thing I remember from that initial ER trip, is all of my test coming back positive for a very active C-DIFF infection and a very significant sepsis infection. The C-DIFF had gotten so bad, it had engulfed my entire colon, to the point where the hospital staff wanted to immediately remove my colon. To that, we very quickly exclaimed that no one had permission to remove my colon. By this point, Savannah had made her way to the hospital to be by side & be a stronger advocate while I found myself in a place and bodly state where I couldn’t be an advocate for myself. This was another one of those places in life where I did not have to say a word and she was right there to realize how badly I needed her support. After hearing everything I had been diagnosed with since minute one of being in the emergency room, Savannah immediately called her husband Robert, my brother-in-law. Because I had been asking for him all afternoon he left from work immediately and made his way to us in the hospital. after being caught up to speed himself, Robert and Savannah both decided they would say it by my side no matter what because with every person that came to run a test or give an update my situation look even more precarious by the minute. I would throw up all over my sister one more time before the doctors and nurses who were swing by my little cubicle would tell her that I was profusely throwing up blood because of the sepsis infection. That would also explain the back to back and random over and over blood test results and multiple viles. They were consistently every hour checking my blood count results. Surprisingly, despite the sepsis infection, my blood counts were within normal limits. With our denial of the colon removal surgery, they began slamming my system right then and there in the ER with antibiotics and antifungals an antivirals. The reason for this was because the ER that night was very busy and it would take 12 hours to get a bed in the Intensive Care Unit. Just before my admittance to the Intensive Care Unit Savannah and Robert would make their journey home for the night. So it was once again just my dad and myself braving the hospital together. It would come to be known that I was one of the sickest patients on the unit that night and through the majority of my ICU stay. Not only would I be one of the sickest only unit almost the entire month of the stay, my case would become one of the most challenging and complex on the unit.. During that time my needs would run the gamut. From constant heart monitoring to nasal gastric tube feeding. I would also have to endure 7 more surgeries during my hospital ICU stay. This would bring my simple 5 surgeries total in life up to a whopping 12 surgeries total in my lifetime to date. From my day of admittance to the hospital to my day of discharge was wondering if short of a month. I would go to the hospital on November 25th 2016 and released on December 24th 2016. And then again from about December 27, 2016 through January 1st 2017…I had another hospital stay. But that one was for pain associated with surgeries that you just had. This time had nowhere near the complexity of the first or the second hospital stay.

It was definitely a wild ride. And I don’t know yet why God had me go through something so dramatic, or even why He chose this time in my life to give me such a trial of life at this age. I may never know. But I do know one thing, I will find the blessings brought on by this trial and true test of my will to live, one day in tenfold. For I know He did not set me on this journey or give me this particular life for no reason at all. I know I was given this life for a purpose. And my challenges have a purpose as well. Now I’m even stronger and my faith and trust in the Lord Jesus Christ to pull me through anything. Because I know, more than once I was questioning during that time in the ICU, whether I would live or die. Since then I wake up every morning with a smile upon my face and a grateful heart. Simply because I am grateful to be alive, doing well now, and healthy. I will never again take for granted the health that I do have, for everyday is not promised.