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.

Advertisements

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

2 Year Old Jude is Conquering RCDP & Inspiring Others Along the Way

Baby Jude with Mom Hannah
& Dad Sullivan (Sully)
Photo Credit: http://www.facebook.com/prayingforjudesullivanpeters

   So, tonight I’m going tell you about a family with a little boy very near to my heart. Mr. & Mrs. Peters were in their early 20’s when their son, Jude Sullivan Peters was welcomed into the world. But Jude’s family was given very grim odds at Jude surviving beyond his birth and then at living beyond the first two weeks of his life at all. .Jude was diagnosed as having Rhizomelic Chondrodysplasia Punctata, Type 1 (RCDP 1), at just 2 days old. RCDP is a very rare & lethal form of dwarfism, fewer than 60 kids worldwide live with RCDP. Jude’s family was told that the condition is characterized by short stature, contracted joints & muscles, and low plasmalogen levels in the body. And it was not likely that he’d survive beyond two weeks of life. Doctors then sent the family home with comfort care instructions & with Jude on hospice. That was 2 years ago! 🙂

Pictured here are 14 of the 53 kids
 living with RCDP worldwide.
To my knowledge 13 of them are still living.
Little Reece (in the red glasses & white jean shorts) recently passed away.
Photo Credit: http://www.facebook.com/prayingforjudesullivanpeters


     Today, Jude is as joyful as ever…despite the pain and struggle his condition brings, Jude is smiling through it all. Jude and his family and the others living with RCDP and the familes behind them are true examples of Nehemiah 8:10 NIV, in my opinion.
  This is the verse which says, Nehemiah said, “Go and enjoy choice food and sweet drinks, and send some to those who have nothing prepared. This day is holy to our Lord. Do not grieve, for the joy of the LORD is your strength.” I know without the shadow of a doubt that our Heavenly Father is Jude’s family’s strength because “tomorrow is not promised” is not just a simple saying in the family’s mind, it is reality. And still they lean hard on Christ. They are so very strong in their faith they inspire me so much.

      You may be wondering why Jude’s story has such an impact on me. Well, like many of you, I’d never heard of Jude’s condition before joining the family’s facebook prayer page in late 2014, (if I recall correctly). At which point Jude was about 8 months old. He had just gotten a back brace, leg braces, & arm splints. My heart is destroyed when I see pictures of him in these things or whenever I think that Jude must wear his braces everyday. And still he endures all of them with a smile that has yet to break or fade from sight. Jude’s joy brings the the sun from beneath the clouds for me when I’m having a “bad day” or a “hard day”. 

Even in all the painful bracing Jude is smiling.
Photo Credit: http://www.facebook.com/prayingforjudesullivanpeters


     In my life, Jude is an instrument God uses to show that, even amidst the pain in this life, there is lanterns shining in a light of joy as well. There are not enough “thank you” messages I could write The Peters’ Family for sharing Jude’s message of God’s Joy with the world. Through following Jude’s journey I have rediscovered that joy is in every situation, regardless of circumstances.

Crazy Busy, Exciting Fun Times

Hi Guys!
     So I’m back after taking time off the blog to enjoy some unclouded family time. Recently, Mom, Dad & I have taken more adventures. We took a trip to Bridgeport for Valentine’s Day. It was beautiful. My dad even figured out how to get me down to the beach area, where Mom & I collected a lot of rocks to be able to finish decorating my beach themed room. 🙂 ❤
     My Valentine’s Day gift from Mom & Dad was tickets to see TobyMac, Finding Favour, Britt Nicole, & Colton Dixon, on the “Hits Deep Tour”. The concert was awesome! 🙂 And even though the concert was out of handicapped seating, we were seated on the top level of the concert arena. Our spot fit my powerchair perfectly. And our view was great, although the pictures are blurry & they reflect how great our view was. So a friend who was there with some other friends of ours, shared with me the photos she got. Here are some tips I have if you’re disabled & you enjoy attending concerts.

  1. Ear plugs are a Must {for me} they prevent your ears from ringing afterwards)
  2. If you are light-sensitive bring sunglasses 
  3. If you are going to be in weather or have bad circulation be prepared. (we took a jacket, extra socks, pajamas & several blankets along for me.)
  4. If no handicapped seating is available, get the tickets for the top row. And sit in the seats just before the aisleway. 
  5. If it’s a wide aisleway, park your chair as outta the way as possible. 
  6.  If sitting the whole event in your chair, get as close as possible to your party’s seats. (leaving aisleways clear & open is essential always.)
  7. Most of all…Enjoy yourself! 

     Hmm…What else has been going on? I also started to groups at church not too long ago. One is a weekly college age ministry. While the other is a ministry for single people at the church. The funny thing is I am the youngest attendee in that group. Lol. Nevertheless, I love both groups & I am enjoying those ministry times.

     Valentine’s is also a even more blessed day in our lives. It is my gorgeous niece Ava’s birthday. 🙂 This year my little”Bear” turned 2! To see her so happy the day of her celebration, brought my heart such joy! I love her so much. I love spending time with my happy, sweet, loving, gentle little &  I get to call her my niece makes me praise God even more for the blessings He gives us in life. I am so certainly grateful, privileged, and blessed beyond measures that sweet Ava is my precious niece. Thank you Jesus for Ava. She is so smart, beautiful, loving, gentle sweet girl.<3 I love you Bear!! ❤
   

Additionally, March is CP Awareness Month! So how will you celebrate?

A short note of food for thought….

I hope everyone had blessed Thanksgiving & Christmas holidays. I know the family & I did.
     
  God just knew how to best bless our family in this the season of giving. And I have the greatest feeling that our blessings during during these holidays, that was only a snippet of the blessings yet to come, ones that He has perfectly prepared to bestow on us just in this time in His perfect way. What those are? I haven’t a clue. When will they take place? Only He knows.These blessings will only come to light, in 1 of 2 ways.
One, we see them happening, while just knowing He has had His hand in it the whole time. Or two, we realize a blessing in something having already taken place, but something later surfaces to make us recall what an amazing blessing had just hit. Never take your blessing for granted.
Food for thought…

Halloween Recap

Hey Y’all!
     I really hope everybody had a wonderful & safe Halloween. Well me & the family had a very busy, blessed, & fun Halloween. Yes I know, ‘blessed’ isn’t usually a word typically associated with Halloween. But, it’s a word I use, as I know God’s Favor was all over our Halloween this year. This year again my twin sister and her fiancé took me & my baby brother to our local pumpkin farm during Halloween Day. While there, my sister & her fiancé put me on the zip line they have there. 🙂 Yes people, I flew through a 300ft. long zip line, for  the first time EVER, on Halloween this year! It was one of the many highlights to the holiday this year. After we’d done all the fun stuff there, we ended this year’s trip with a hay-less hayride around the farm… 🙂 The reason the ride was hay-less is because the trailer had a ramp and 2 spaces for wheelchairs. We all had a blast!
     After the pumpkin farm, we drove to our church to get ready to assist with the downtown event, the church & my sister-in-law organized. My aunt & I ran “Trunk-or-Treat” out of two of the family cars along with several other volunteers who ran it out of their cars as well. We had “Trunk-or-Treat” running for at least 1 entire block of our downtown area. We met & fellowshipped with over 2,000 families.

Gianormous SUPRISE trip to See Zac Brown Band!

Hey Y’all

     Sorry it’s been awhile since my last update. You all have no idea just how nuts my world has been lately. For starters, my church music activity just ended, sort of. So my activity schedule has been a little hit-or-miss. Then my twin sister & her longtime boyfriend just got engaged. They set their date for a day coming up here soon. So wedding planning has been crazy, fast & furious. Lol. 🙂 My brothers are all doing great. Despite nearly all moving out, I am able to stay in contact with each of them pretty constantly. Which is great cause I miss them all like crazy! Then I’m trying to make plans for this summer’s activities already. I’m really hoping to take a trip to visit some friends during this summer break. But before then, we have to get through the holidays, which are bound to be busily crazy like always.
     Anywho, That’s all coming up very quickly. But this past weekend it was time to leave my busyness at home and spend a night as a normal care-free 20-something enjoying a night out. How did I unwind? With a surprise trip to a Zac Brown Band concert! My 3 sisters really wanted me to go with them. So they surprised me with a few tickets just before we were set to leave. And  let me tell you Zac Brown is amazing in concert! After the show, I went to get stuff signed and  met 3 of the band members! At that point I just about lost it. I couldn’t believe I was meeting 3 Zac Brown Band members. And then, to top it off, all 3 guys suggested I get a picture with them…That was the  “night made” moment. Happy belated birthday to me! It was an awesome gift and experience!!! 🙂


The whole band on stage



Zac
Ain’t he handsome?



Meeting 3 band membersxperiancxe
3 very nice dudes 🙂



Meeting the opening act
The Muddy Magnolias



More stage shots

A Sunday filled with fun!!! :)

Hey Y’all!
(Week of August 2, 2015)
     I hope everybody had a wonderful weekend. I know I did. Saturday was as normal, I went to church and sang with the worship team. Then, my mom & dad took me to the last day of our city’s fair/carnival. We had a blast! We saw lots of interesting shows, including a semi-local cover band performed. It was the Terry Sheets Band. I also played a round of my favorite carnival game, “Balloon Darts”. I kicked butt on that…as usual. And won a pink monkey, which I traded up for a big turtle with a pink shell. 🙂 At the end of the night, Mom, Dad & I rode all together on the ferris wheel. PS: Just say no to fair/carnival garlic fries…Yuck! This is how we celebrated mom’s birthday this year.
     Now, it’s back to business as usual. We all just relaxed at the house, once home from our fair venture. And celebrated how wonderful my mom is.  
     Jake called  to tell our mom happy birthday.
     In the coming weeks friends of our are getting married, we have a family member going away to school to follow their childhood dream of flying planes. Several more of us begin fall 2015 semester. My brothers won’t be home visiting all of us til about Christmas when we’re all on winter break.