First post of 2020

 Welcome Back Everyone~

Wow, it’s hard to believe this is my first post of the year 2020; honestly, I had planned to post before this posting or YouTubing views of my apartment downstairs. Obviously, it’s not in the cards right now. Despite all this uncertainty, was determined to make this year of dreams; to further my cause, I have joined Bethany Hamilton’s Unstoppable Year online course. Each month of the year focuses on a different topic; -for example January focused on being present and not becoming bogged down with things on social media. She not only shares her opinion on each topic, but opens up the conversation to friends of hers that have experience of some kind with this..

I’ll be honest, I’m only on the third month because I t have been busy and distracted by other things (which I will go into later on.) Hopefully things will slow down and I will be able catch up... But this online course is pretty much self-paced and you can watch the videos at your own leisure (rewatch them even.) Depending on how you choose to pay, each course will be available in month after you pay the first month of $9.99- or 1-time payment of $99 for the whole year.

And as many of you know, I have been wanting to add a puppy to my family for a long time now. Well, it is finally happening. I know we had wanted her to come after the basement was built, but I just couldn't wait. I mean I've been waiting 20 years already. So I put a deposit down in faith for a litter in Virginia Beach. The litter didn't end up happening and I was offered a pick in the next group of puppies. After my mom opened up about her concern about puppy size, we did some more research and came upon Gorgeous Goldendoddles. Not only did the fact they had medium size puppies available do it for us , But they also shared their faith on the website.As a result, we proceeded with them and recently went down to see the puppies in person. They were all so cute; it was hard to make a decision. In the end, here were my top three picks

Aspen Holly and Noelle (from left to right)

I liked Aspen because of its unique white socks and Noelle because of her bright blonde color. In the end, Holly's name just stuck with me (I really don't know why) but she seemed the most calm of the bunch .Anyway, barring any complications at the vet today, she will be ours February 12.I still can't believe it; I guess I'm still in shock that it's actually happening . I know the puppy months will be tough but I will get a long-term friend this; we also hope to train her to do some assistance dog skills as well.

As if that's not enough, I have also been trying to finish my Christian section book and get it ready for a literary agent . Please pray that I remain focused amidst our new family member and remember I am representing

Philadelphia adventures; moving chaos

Dear Readers,

I can’t believe it’s been a month since I’ve written on this blog and more since I’ve updated my YouTube channel. Actually I can. But to me, time seems to be going extremely slowly. Let me explain. After I returned from the Christian Writers conference in Philadelphia, I was ecstatic and on fire to finish my book. I'd spend my days writing nonstop-rarely stopping to read or update my Facebook. Believe me, that’s quite a feat considering I have a tendency to write on it at leastI did once a day. It’s a wonder, my friends didn’t private message me about my whereabouts. But now you know. I’m trying to remember whether I updated you guys as to my project.

In short, they liked my idea of having a disabled character center stage and thought I could give it a unique voice, considering my situation. They just encouraged me to keep writing and think about getting an agent. They said my writing seemed strong enough. We even met one at the conference interested in reviewing my work.  But that was put on hold because of our upcoming move.

Before our adventures at the conference, we had been in the process of finding a home in which my parents could downsize and still keep my special needs in mind. After months of searching and putting our house on the market, we finally found one and are in the process of boxing our stuff to move. We have to be out of here soon and I feel bad I can’t help.

We're all stressed around here and it's showing itself in different ways. Dad's getting migraines (which he's never experienced), mom's back hurts her because of all the packing, me-, I can't write. Severe writers block.

The next few weeks are going to be complete chaos. Hotels, movers, etc.

Since my basement will not be done for at least a month, I will be living stairs. The change will be a bit to get used to. But at least I can be upstairs for Dinners for a while. Oh, I am not looking forward to having to rehire aides in that area. That's going to be fun. On the bright side, maybe some of them will be willing to take Medicaid so we don't have to pay cash. Although, this new timesheet system..

Anyway, I'm sorry my writing is not as eloquent as usual. You can tell I'm a little frustrated. Change is always difficult for anyone

Hopefully, I will be able to show you some pictures in my next post

Prayers would be appreciated

Debbie

Camp Echoing Hills

Welcome Back Readers ~

My dad always tells me how blessed I should be living in the technological age that I am, and having a disability. And I come to believe that more now than ever. You see, today I watched Thriving With Cerebral Palsy:The Cordell Brown Story. This documentary tells the story of Cordell Brown and the difficulties he had growing up with a disability. Despite having parents that instilled a "can-do" attitude within him, Cordell still struggled to accept his disability on a daily basis. That is until he found Jesus. With his newfound faith, he tried his best to integrate himself into "normal" society with little success- because of the stereotypes that people had of CP at the time. Until a friend named Bob allowed him to volunteer as a driver for his Bible camp; from there he worked his way up into higher level jobs in the camp. It was during his work at the camp that Bob mentioned the idea of starting a  camp for people with disabilities on his family land. As always, his parents were supportive. It was then that Camp Echoing Hills was born..

For more information on Cordell's story or Echoing Hills, please go to:

https://www.ehvi.org/

https://www.facebook.com/echoinghills/

https://www.coshoctontribune.com/story/news/local/2017/07/20/camp-echoing-hills-50-years-serving-developmentally-disabled-clients/468293001/

getting to know Debbie part 2

Welcome back Readers;



In my last blog, I opened myself up to questions from my readers; unfortunately, the response was underwhelming so I had to resort to questions I've been asked in the past regarding my disability. I apologize in advance for the lackluster of this video as I was feeling a little under the weather that day. That being said, I decided to share it again here. If anyone has any new questions for me, please feel free to email me at the new email I've added to this blog and I will be happy to respond to you.


I do have a new video that I plan on posting a bit closer to Valentine's Day about the true meaning of love. This is for all the single ladies out there struggling to find their purpose in life and waiting for "the one" to enter their life so they can finally celebrate the day. In this waiting period, so many single ladies are missing the moments in between where they have the freedom to touch other people's lives in ways they can't imagine. So many people need love in this world; so many people need companionship.

Too often we forget about them and focus on ourselves. We shouldn't

getting to know Debbie video

Dear readers,

If you've been with me long enough, you know that I recently started a YouTube channel. Now you are able to put a face to my writing. Anyway, in the spirit of getting to know my readers and audience more, I posted a video asking for questions- about me, my disability, etc. This goes for my blog audience as well. Please feel free to ask me anything. I'm pretty much an open book. Hopefully, I will see some of you on YouTube. Leave me a note saying you read my blog if you do. I'm not just writing this for myself, I'm hoping to pass on the knowledge I've learned having a disability to others.

God bless,
Debbie

Consumer Chaos: My Experience with Consumer- Directed Care So Far:

Dear Readers~

Happy New Year to my readers both new and old. As I'm writing this, I can hardly believe it's 2019. Where did the last year go? Although I have been really busy with my YouTube channel and getting consumer-directed care all squared away, my blog has kind of taken a backseat. In all honesty, I had no idea what I was getting into when I decided to embark on this new adventure of directing my own care.

True, I've had my share of ups and downs with agency-directed care- including those who could not understand English enough to take my direction and almost burnt the house down or those who just had their problems getting paid by the agency on a timely basis and therefore quit on me several times a month. You name it I've probably dealt with it. Still, agencies had their pick of personal assistance already vetted and could send them to me within a couple of weeks.

Now, I'm stuck doing the entire process on my own. Granted, I do have a consumer facilitator offering me suggestions on where to put my job openings out there, and he is great. One of the places to locate caregivers is mysupport.com. This site basically allows consumers to search for personal care assistants based on their needs and hours. But if I'm being honest it sometimes feels like I'm putting myself out there on a dating site; if it doesn't have enough bells and whistles on it, it doesn't get noticed. In the meantime, my dad and mom are the main caregivers and my dad has even gone so far as to be hired by me through a website so that I don't lose my hours through Medicaid. 

The problem is that the hiring process is so long and drawn out; it's difficult to have to mail papers back and forth to make sure my dad is vetted. I mean, he's my dad. I know him and trust him with my life!

I have even gone as far as putting my job openings on out-of-the-box websites such as care.com. The difficulty with these websites is that most people want more money for their time and it is not covered. I mean I don't blame them, taking care of a person with special needs is hard work and takes dedication. But paying out of pocket is difficult and not a good long-term solution.

Still, that's what I'm doing at the moment paying out-of-pocket for someone to come twice a week during the day. My parents need a break.

I pray as I continue along this journey that the right person comes along- someone who cares about people and who loves their job. I know God will put the right person in my life at the right time. In the meantime I remain patient, knowing that everyone who comes in contact with me does so for a reason- even if they don't know it.

I would appreciate all the prayers possible and positive vibes as I don't know what the new year will bring. But God does... And that's enough!

Debbie

PS. Feel free to share your personal care journey in the comments below. I would appreciate knowing I'm not alone in the process!

My Experiences Aboard the Ruby Princess and in Alaska!

Dear Readers,

First off, let me begin this post by saying how happy I am to be back on dry land. No matter how much fun I had with my extended family and parents celebrating their 50th anniversary nothing compares to the feeling of being back at home knowing that your wheelchair arrived in one piece. Those that have traveled on airplanes will no what I'm saying - especially once I show pictures of how my wheelchair arrived in Seattle. But let me start from the beginning.

After months of planning my mother had finally settled on taking the seven of us (brother and sister-in-law family included) to Alaska for their 50th anniversary. Congratulations again to mom and dad. I can only hope to have the kind of relationship you guys have - one of faith and commitment - that has lasted this long. In the beginning, we debated on taking my new wheelchair, concerned that it would get damaged in transport. You see I've traveled by plane several times before and have seen how they tried to carry my other wheelchair to the conveyor belt. Yes, they've actually done that. So you can imagine our concern about damaging the head control. But still, I was determined to be somewhat independent during this trip. So my dad took every precaution- learning how to dismantle the head control and joystick before handing it over to the airlines to board. He even attached a box with the parts on the wheelchair so they wouldn't get lost in transport on our way to Seattle. Despite our preparations, this is how the wheelchair arrived.

Don't get me wrong, everything turned out wonderful and we were able to fix it when we arrived in Seattle where we were to board the next day; I'm just letting giving people a realistic view of what can and often does happen to wheelchairs at the airport. The airline we used were very patient and apologetic as they stood watching my brother and dad put it back together again. It's just that people using wheelchairs should be ready for anything after traveling by airplane. Once we collected our luggage from baggage claim, we were about to head to the hotel for the night when we were met by a Princess representative. We explained we were supposed to get a transport from the airport to the dock to go aboard ship tomorrow; she took our information and made the transportation even easier for us arranging transportation from the airport to our hotel that day as well as arranging transport from the hotel to the dock the very next day- eliminating one less trip for our numerous bags.

Onboard, mom had reserved two suites for us - one accessible one for us and one regular for my brother and sister-in-law as well as my nieces. They both were pretty much identical except for the amount of closet space (I assume the lack of closet room in the other suite was used to accommodate and make extra room in our suite. Sorry guys!) and the accessible bathroom  Otherwise, we both had a balcony. I was surprised by this because I would've thought they would be afraid of possible accidents. But no, there was a little ramp inside the door that came out every time the balcony door was open. Granted I made sure that my parents watched me every time I went over it just in case  (see the pictures below)

Although the suites were accessible, I still had a lot of difficulties getting around the ship. This is for two major reasons.

1. The hallways
2. The elevators

In most cases, the hallways are narrow to the suites not leaving much space for a wheelchair let alone other people to walk by. In terms of the elevators, I have two complaints. First, it is difficult to get on one.  Now I realize that this is probably because Princess cruises are larger and have room for more passengers, but that still doesn't account for the quickly closing doors. After all, elevators are primarily for those who are unable to walk up and down stairs. Right? I was fortunate to have someone with me at all times to make sure my chair did not get caught in the doors. But there were some very close calls at times.

Despite the difficulties, I had a marvelous time going around the ship and out to the ports. The first evening everyone and I went to go see a musical production called "Magic To Do" in the Princess Theater. Exclusively for Princess cruises, this musical featured a compilation of songs from Stephen Schwartz. Some of these included Pippin, Godspell and many more. We also made quick friends with Ashley, Monica, George, and Joe. Their family and ours developed a deep connection when they realized I also had CP like their daughter, Ashley.  (If that weren't enough for coincidences, they too had purchased a wheelchair controlled by a head- array.) Since Ashley is only 15, they were happy to see the possibilities ahead for their daughter...

On our first day at sea, the family met for breakfast as my nieces geared up for their time in their age-appropriate activities. Since they weren't allowed around the ship on their own, Elizabeth and Rebecca and I ventured out to get ice cream on our own several times. This was really exciting for me since it allowed me to practice my driving and see how helpful my nieces might be in the future. Elizabeth and Rebekah are really growing up right before my eyes.

On our first port of call (Juneau, Alaska) we disembarked with hopes of taking the tramway overlooking the mountains. But that was not meant to be as passengers who booked the excursion were stuck on the mountain do to the tram not working and they were unable to find a way down until hours later.. Fortunately, Monica and Joe were able to enjoy the view before it broke down; unfortunately,, though, we had to stand in line and wait for a refund. Even so, we made the best out of a situation by meeting and talking to a real Alaskan born Indian from a tribe (I believe it was he was one of the only Alaskan Cliniko Indians in Alaska). I also got my very first Alaskan souvenir from the trip.

On Tuesday we arrived in Skagway Alaska (our second port of call), where we prepared to board the   White Pass and Yukon Railway. This is a four- hour train ride into the mountains via the White Pass. While Ashley and I enjoyed the view from the car, our parents were free to watch from the open platform between the two cars. Locally, I was able to raise myself up to look out through the windows and see more of the views. At the top of the mountains, we briefly passed through Canada (we didn't need our passports though) and later always down. See some of the pictures below.

Wednesday was relaxing day on board as we moved through Glacier Bay National Park. Park Rangers climbed aboard in the early morning hours to answer any questions the passengers may have had; I even got my picture taken with one of them. Below is a picture of my family and I took at the Margerie Glacier.

We embarked on our third port of call on Thursday in Ketchikan Alaska. While my nieces were interested in seeing if there were any seals in the river, I found myself occupied shopping. It was in Ketchikan where I found my final souvenir for Alaska a purple necklace which I paid for myself. When we boarded the Ruby Princess cruise ship once more, we found a surprise at our door- an exclusive invitation for all seven of us to dine at the Share restaurant- an exclusive restaurant of six-course creations by a famous cook.

Friday was my parents 50th anniversary as well as our final day at sea. We spent the morning drinking coffee on our balcony while trying to see if we could spot any whales at the same time. Our friend, Monica brought over some wine she brought from California to celebrate and we had a girls time. For once, I actually enjoyed the sweet wine (which I later found out was Stella Rose.).

 Since my brother and sister-in-law were out on excursions with Elizabeth and Rebekah, we celebrated my parent's anniversary just the three of us in our usual dining room. It was neat because the waiters actually sang happy anniversary (song sang to the tune of "Happy Birthday") and videotaped the whole thing. Later we disembarked with Ashley's family and explored Victoria, British Columbia, Canada together. All in all, it was an amazing cruise with wonderful weather and amazing memories--full of amazing memories and brand-new friendships. Someone told us that this was the best weather they've had out of the 21 cruises. Most of the passengers were unable to view the glaciers because of the fog or rainy weather, but we had a wonderful clear view. 

Encouragement:38 years in Bethesda

Thirty-Eight Years at Bethesda

Guest Thoughts by Debbie’s Dad

One of several interesting accounts about disabled people meeting Jesus occurs in John’s Gospel during Jesus’ second visit to Jerusalem. The account describes His encounter with a disabled man at the pool called Bethesda. It was common in those days to have pools for healing and purification. At this pool there was apparently a tradition that when the waters in the pool moved, there was a race to get in the pool – the first was healed. (This healing competition is certainly not consistent with a Hebrew or Christian view of compassion for the disabled - a race, a race of the disabled for healing? Pretty ironic, right? The ancient world had many deities and must have also had many such traditions!) Of course, the pool area was filled with “a great multitude of sick people, blind, lame, paralyzed” waiting for this event (John 5:3).  John describes the encounter like this:

⁵ Now a certain man was there who had an infirmity thirty-eight years. ⁶ When Jesus saw him lying there and knew that he already had been in that condition a long time, He said to him, "Do you want to be made well?" ⁷ The sick man answered Him, "Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me." (John 5: 5-7 NKJV)

As the father of a disabled daughter, this brief account raises several questions in my mind:

What kind of infirmity did he have?  John notes that at the Bethesda pools there were “a great multitude of sick people, blind, lame, paralyzed”.  The original words used to represent lame and paralyzed refer to those who are physically weakened, limping, and whose body is withered. The man that Jesus met is described by a different word that more generally refers to his weakness or infirmity that he had for 38 years – likely run the business and would like to talk his whole life.  Because of this, it is reasonable to think that this man might have had cerebral palsy and, like Debbie, suffered brain damage at birth that impaired his muscle tone and motor activity. And like Debbie, he may have been quadriplegic, because he was “lying there” and unable to get into the pool.  In any event, someone caring person brought him to the pool of Bethesda that day, where he was reclining. 

Who cared for him? At the time of Christ, it is believed that a normal lifespan was about half of today’s 80 years. If this is so, the man’s parents would have likely died over a decade or two before this point.  Relatives – siblings, nephews, cousins, or neighbors were probably caring for him and in those days this was not easy. We also know that Jesus encountered another man who was cared for by some men who lowered him through a roof to be able to meet Jesus. (Luke 5:17-20) In that case, Luke specifically used a word that is often translated as or “sick with palsy” a condition of weakness with inability to control aspects of your body; that man could also have his friend is a missing had cerebral palsy.  In that time, caregivers had a difficult time - and Jesus specifically commended those who cared for the weak (the same word used for the man at Bethesda) as if they care for Him! (Matt. 25:36)

Why Did Jesus ask him if he wanted to get well? Jesus “knew that he had been there a long time” and yet asked the man if he wanted to be whole. A good friend of Debbie’s once told me she asked Debbie the same question – and Debbie hesitated. She has been quadriplegic her whole life and this is how she perceives herself; she could not imagine being whole. I believe it was an act of kindness that Jesus asked what might seem like an obvious question. Did the man want this radical change after 38 years? I believe you know the rest of the account; Jesus instructed the man to get up, pick up his mat and walk. And he did, in an illustration of Jesus’ power over nature, clear evidence of his claim to be the anticipated king of the Jews, and an example of grace to a man who had given no indication of any faith in Jesus (See John 5:11-13).

Why 38 Years of waiting?  The man indicated that he never made it into the pool because he had no one to put him in the pool. He had effectively been waiting a long time to be made whole! It is a long time. I know. The reason this passage has particular meaning to me because this year is because Debbie has now been a quadriplegic for 38 years, too. And she is trusting in the very same Lord Jesus that met the man at Bethesda. Near the end of His ministry and prior to his crucifixion, Jesus simply said, "Let not your heart be troubled; you believe in God, believe also in Me …”(John 14:1)  I am proud of my daughter who heart is not troubled – because she believes in Him.

Debbie’s Take: First off, let me say I never really realized this miracle happened to someone my age or disability. In reading my dad’s description, I have gotten a new understanding of the miracle of the 38-year-old man. To be honest, I don’t remember when my good friend asked me if I ever wanted healing or what my first reaction was. I can only surmise that I was taking a back because I’ve never really thought of it. That isn’t to say that I don’t believe God can do it these days. I KNOW HE CAN. Miracles happen every day. We just need to be open enough to see them.

Growing up, strangers have tried their best to “heal” me of my CP. I don’t doubt their sincerity in trying to pray for me and help me. However, coming away from those experiences I couldn’t but be disappointed and upset. After all, some people tend to equate faith with one’s ability to be healed. Did I not measure up?? Was there something wrong with me??  Coming away from those experiences, I was often disappointed or upset. After 38 years, I have come to a different conclusion- that I'm disabled like this for a reason. I would like to believe dad’s reason for Jesus asking the man with the disability whether he’d like to be healed is correct. Jesus not only wants to make sure the man believes, but Jesus realizes he’s spent 38 years and has become comfortable with his situation.

As dad mentioned earlier, a friend told him I once hesitated on the topic of being healed. As I have explained above, this question has often brought feelings of doubt and not measuring up to the surface. But even more than that, I don’t know who I’d be if I weren’t in this wheelchair. One characteristic can change your whole perspective or outlook on life and I don’t really know myself any other way.

Michael Ketterer: Father Of 6 Scores Golden Buzzer From Simon Cowell - A...

Welcome Back Readers~

Every year America's Got Talent seems to have its share of inspirational stories; 2018 is no different. Last night AGT featured father of six Michael Ketterer. Ketterer works as a pediatric mental health nurse from Orange County California. Originally, he hadn't planned on having such a big family until fate stepped in. After a difficult first pregnancy,the couple gave birth to a beautiful baby girl named Sofia; the doctors warned that if they wanted to have more children they would most likely encounter the same experience. So Michael and Ivy decided it would be just the three of them.. That is until Sofia began having dreams which had three little boys and them; it was then that they looked into the idea of adoption. After three years of getting certified, they were called about three brothers from a difficult upbringing. That's how there family began growing. After a year and a half, the couple receives another call, another little boy was available. By this time, they thought they were done for sure. Wrong again. God had other plans.

Because of Michael's background as a pediatric nurse, the next call was a special one. This one involved a little boy with cerebral palsy. But Michael still wasn't sure about it. So he asked God to give him a sign. On his way home one night, Michael saw a literal featuring a father pushing his son with CP through a marathon.

And that was it. He knew.

For more information about this amazing contestant and his family, please go to:

https://www.knoxnews.com/story/entertainment/2018/06/05/americas-got-talent-knoxvilles-michael-ketterer-audition/670516002/
echo pause
https://www.facebook.com/WFLANewsChannel8/videos/10156005412924760/

My Very Own YouTube Channel

Dear Readers,

For a couple months now, I have toyed with the idea of creating a YouTube channel where audiences could actually put a name to my words as I write my blog. This would allow me not only to get to know my readers on a more intimate platform, but put something out more often. I'll admit it's not as easy for me to speak on recording as it is for me to write. But hopefully you will appreciate my effort and come to me with more questions or comments this way. I don't pretend to know it all when it comes to having a disability, but hope to be a help to those on their personal walk of self-discovery. Either way, I'm here if you want to talk. I have no specific plan for these videos except to say they will inspire and challenge you on your road - whether you have a disability or not.

I will be continuously updating this as people become more involved. I look forward to seeing what God does with this..

God bless,

Debbie (a.k.a. Rollin Debbie)

For more information on this channel, please go to:

https://www.youtube.com/channel/UCVS_NHAx_sZl5_DkAH9xVCA?view_as=public

CP Awareness Month;Zach Anner follow-up

Welcome Back Readers~

Because it is CP Awareness month, I thought I'd highlight one of the most popular comedians with CP on YouTube, Zach Anner. Some of you may remember me highlighting him from Oprah Winfrey's Create Your Own Show on OWN. He completed against other contestants in an effort to pitch his own traveling show. In the end, Oprah couldn't choose between the top two finalists-Zach and his traveling show as well as Kristina Kuzmic-Crocco's cooking show (if I remember correctly.) He recently added the title of author to his resume, penned his own memoir entitled If at Birth You Don't Succeed: My Adventures with Disaster and Destiny. Unlike the inspirational approach, Anner chooses to make light of his disability never letting it stop him.

Also, this month, the CPF is having a fundraiser in order to raise money for their organization. It starts on March 25 and involves downloading a app on your phone and exercising.



For more information  on raising awareness of CP, please go to:

https://www.facebook.com/cerebralpalsyfoundation/?hc_ref=PAGES_TIMELINE&fref=nf

For more  information  on Zach Anner or his book, please go to:



https://www.facebook.com/zachannerfanpage/

https://www.youtube.com/channel/UCPTVYxUoYWhNa8J7GzIGnyQ

http://www.lovethatmax.com/2016/03/a-book-from-zach-anner-guy-with-sexiest.html

Assistancee Dog Issue goes straight to Supreme Court

Welcome Back Readers~

I was watching the news last week and came across a interesting story; it involved a young girl with CP w(cerebral palsy) and her struggle to gain independence in school the help of her assistance dog Wonder. In 2009, Ehlena Fry and her goldendoodle Wonder were first paired together during training in Ohio; this opportunity made possible through a $13,000 fundraiser held by family and friends. The trouble began when they tried to transition Wonder to assist her during school hours .at first, the school agreed to a 30 day trial.This didn't work out as planned, however , and was marked with one obstacle after another. Eventually, the Fry family decided to change middle school.

Still, they believe the other school needs to be held accountable according to the Americans with Disabilities Act .

For more information on this story, please go to: 

Http://www.npr.org/2016/10/31/499876610/a-girl-and-her-service-dog-head-to-the-supreme-court

Looking Back at the Last Four Years of Independence...

Dear Readers,

 It is with mixed emotions that I finally come to terms with moving out of my apartment next week.. That's right folks! After about four years of living independently, I will be moving back in with my parents until they figure out where they plan on retiring. It is  not a  decision  I  (or should  I say we) came to easily, but the  financial  burden was  getting to  a bit  much. For  those living in Virginia, you  understand exactly where I am coming from.

Still, living  independently is something that I would encourage  everyone  with a disability to  embark upon.  Not only does it  teach people what they are  truly capable of, but give parents the benefit of knowing what it feels like to  let go  without the  fear of ultimate failure. In other words, they are still around to teach   them when necessary while  giving  their children the freedom to make mistakes...

Let's take a look back at my journey. When we first moved to Virginia in 2008, I found it difficult to make friends. My family and I spent several months settling in and trying to find a church we felt comfortable with. After looking at several prospects, we finally decided on a church whose main goal was teaching straight from the Bible, verse by verse. It was there that I met Sadie and we developed a friendship. Beginning December 4, 2011, we discussed our dreams of living independently and toyed with the idea of becoming roommates. Like myself, Sadie was determined to spread her wings and fly! Looking back, I  feel as if this was God's plan, giving us the opportunity to prove our capabilities to our parents. My parents weren't exactly comfortable with the idea of me living by myself, so this was a logical compromise. That  way, they knew someone would be there in in the evenings (as well as at night) in case of emergencies.

In January 2012, we finally signed a one-year lease for a two bedroom apartment;its location was close enough to my parents that they could come help when needed. Little by  little we begin to make that apartment our home, adding sparks of color (and accent walls!) Along the way I learned important lessons about cooperation and compromise.  At first, I spent a majority of my time working on this  blog; never giving up hope that I would find a job. Occasionally, we would have friends from church over for movie nights and to celebrate birthday parties. We both thrived until unforeseen difficulties caused my roommate to have to move out. This left me reeling, wondering how all of this fell into God's plan. But you know what they say- When God closes a door, he opens a window. It was  around that time (or earlier)  that I was hired to write blogs on website accessibility. My parents were still unsure about my ability to live on my own but figured since I was financially stable, I should at least finish the lease.

I continued to work for the remainder of the lease, but  felt the apartment  was a little too big for  one person. For a while, I  wasn't sure whether a one bedroom apartment would open up and I have to move back in one my parents; sometime during Christmas break I was notified that one had  became available- an early Christmas present. So on February 19, 2013, I began  transferring my  belongings from one apartment to the next with the help of some friends from church. Although I had lived independently before, it was an exhilarating feeling knowing I was completely on my own. I was responsible for paying the bills as well as making the place my very own. In other words, I was now a part of the typical workforce, getting up early in order to telework several  hours a day.. In the process, I dealt  with my share of personal assistant problems; this reiterated the value of advocacy on a daily basis and making sure my voice is heard.

All in all it has been amazing five years; during which I've gained the self-confidence of knowing what I am truly capable of. It's been a roller coaster of emotions but that's just a part of life;as my college pastor used to say, "Exp|ct the unexpected." While moving back sometimes feels like a step backwards for me, I have to believe God has something bigger in store for my future- and this was just a glimpse into what is humanly possible..I haven't given up  hope that I will settle down permanently- with a full-time job and a place of my own (maybe even  a boyfriend!) It just isn't my time yet..

Until then, I will have fond memories to look  back on and am forever  grateful for the experience. I just need to to where my primary focus should be- trusting God  to provide for the future like he always has. Maybe this time back home will rejuvenate my faith..

( This will be my last post from the apartment; all other posts will be from my parent's place! Internet will be disconnected sometime tomorrow.. Chuckle)

Reflections for the upcoming season; Debbie's update

Merry Christmas.

Even as I dictate this, I can't believe it's that time of year already. For those of you that have followed this blog over the year, you probably understand what I mean..  Since losing my job almost 2 years ago, posts on this blog have been pretty sparse. Partly because I've been spending my time mailing out resumes  to appropriate contacts as well as dealing with  Social Security in  the interim. That's a whole  other story within itself. But I digress

The fact is I haven't been quite myself since.  True, the job help me out financially but even more than that it gave me a reason every morning-  a new sense of purpose. You see, I've always felt a calling when it comes to advocating for the disabled; I just wasn't quite sure how that criteria will fit into the job description;  that is until I started writing blogs on web accessibility- things sort of fell into place after that. I loved my job, people  appreciated me. More than that, having  financial independence gave me a new sense of freedom; I was able to support myself and continue living the apartment.  In hindsight, this began a negative pattern of self-reliance. I almost  forgot who had provided the job in the first place and how to be grateful in the first place

Hence, I can't help feeling that's why I am where I am right now. Not as a punishment, mind you but allowing me the time to get my bearings and learn a deeper dependence on God then ever before. Still, that doesn't mean I am not disappointed that I have to move back in with my parents in February. I will certainly miss my place.

I've heard it said that Christmas comes when we need it the most. That's certainly true this  Christmas. I need  God to renew to me the joy of my salvation.

With that, I leave this  question to you my readers: What present would you give your heart this Christmas?

Mine would be a new sense of faith and hope for the future
(Yes I know the verse Jeremiah 29:11- that God already provided for that but it's another thing to fully leave on that promise day in and day out, I'm only human!)

Meet HK- How a Unlikely FriendshipTransformed 2 Lives

Welcome Back Readers,

While listening to  Delilah on IHeartRadio one evening, she introduced her book  of the month club selection. This month, she chose The  Awakening of  HK Derryberry: My Unlikely Friendship with the Boy Who  Remembers Everything. This book tells the inspiring true story of how one chance meeting transforms two lives for the better. You see, HK was born with cerebral palsy and  several  other disabilities;  in his young life, he had encountered numerous  difficulties from not knowing  how to interact in social situations to  dealing with  physical problems

HK  is now 26-year-old  and a wonderful young man. It has been eye-opening learning about his  transformation due to  Mr.  Bradford. On the flip side, I'm sure Mr. Bradford is more open to God's leading in his life.

For more information on this  book or their  amazing friendship, please  go to:http://www.hkderryberry.com/

Micah Fowler takes center stage in Speechless, giving Disabled Community a voice

Welcome Back Readers,

According to a new study, over 95% of disabled characters on TV shows are played by able-bodied actors. To be honest, I'm not surprised. There needs to be more diversity of disabilities shown on television. This would hopefully develop a new understanding for general audiences and begin a open dialogue of how to interact with the disabled community.

Apparently, I'm not the only one that feels this way. Scott Silveri said he based the comedy off his own experiences, having a disabled sibling with a disability. In attempt to be authentic, he felt it was important for a real disabled actor to play the part. That's where Micah comes into play;Like the character of JJ that he plays on the series, he also has cerebral palsy. The series will attempt to uncover the myth of what it means to have a disability; although it does that and so much more.

Speechless airs on Wednesdays at 8:30 PM





 For more information on the show, or Micah Fowler, please see the following links:

http://www.ew.com/article/2016/09/20/speechless-micah-fowler-breakout-star

http://variety.com/2016/tv/news/speechless-abc-premiere-creator-disabled-actor-micah-fowler-1201867014/

https://www.buzzfeed.com/arianelange/micah-fowler-speechless-abc?utm_term=.ygR1LEOxk#.hvZwnK81L

Encouragement: Real Sportsmanship

Dear Readers,
It's the beginning of another week and I thought I would start it with a little encouragement. 

When I say the word football, what comes to mind?

Football..

Touchdowns..

Tackles..

I bet good sportsmanship isn't at the top of the list.

But Max Akin tried to change all of this with with one simple act. He passed his homecoming crown to a friend, K.L. What's more? K.L has cerebral palsy


To find out more information on this story, you can go to:
http://www.wfaa.com/sports/high-school/homecoming-king-passes-crown-to-friend/318892002

High School Athlete of the Month: Hunter Gandee | Sports Illustrated

Welcome Back Readers,

Okay, so I missed writing on this blog last week but now I'm back. Some of you may recognize this brother duo of Hunter and Braden Gandee from a post I wrote last year. Braden has cerebral palsy; In an ongoing effort to raise awareness for the plight of those with disabilities, the two decided to take a 40 mile track from their home in Temperance, Michigan to Ann Arbor. How was this accomplished? Simple. His brother carried him piggyback the entire way.This year, the duo decided to take it one step further walking 57 miles; this time to raise money to get a more accessible playground. Hunter was named High School athlete of the month in Sports Illustrated

Similar news articles:
https://www.disabilityscoop.com/2015/12/15/high-schooler-athlete-cp-work/21684/

Encouragement: New Lease On Life

Hey Guys~

It's Friday with record high temperatures of 112 degrees here in Virginia and I'll be honest, I'm glad to be inside. Although after over a month of doctor appointments and hospital stays, I'm having my ups and downs with "cabin fever": you probably would to if you had daily infusions of antibiotics and you had to be home for weekly blood draws as well.

All in all, I'm happy to be alive. There's something to be said for hindsight because if you would have told me I would have a new lease on life after being in the hospital for a total of about three weeks (both of my hospital stays are included here), I would have said you were crazy. But it's so true. Life without the baclofen pump is so much happier. Doctors disagreed with me for years when I told them the baclofen flowing straight to my brain through my spinal fluid was causing my mood swings or feelings of depression saying there was no "conclusive" evidence linking the two. Maybe they're right, but I have never laughed more since having the pump out and taking oral baclofen. (For those of you who are new readers, the baclofen pump had to be taken out because of a severe infection in my back). Not only that, I feel like I can think clearer than I have been in years. Now, I feel like I am not only interacting with the world around me but enjoying my life.

Taking all of this into account, I came across this song "What Life Would Be Like" and it accurately describes the new lease on life that I feel I have. I am alive for a reason-to interact with the world and make it better by giving people hope in the midst of dark times. Just like God gave me hope

Please take the time to really listen to this song and examine your heart. You might be surprised at what you find...

http://www.youtube.com/watch?v=qdbPynNI9Xo&ob=av3e

The Dentist

Hey Guys~


As I will be (or have been already since I'm writing this post a little later) to the dentist, I thought my readers might appreciate this website link. This website clearly explains why children with CP have a hard time at the dentist since they have a tendency to move around in an effort to try and relax their muscles.

http://www.dentalville.com/?p=432