With a little help from the system? Not so much.........

Once you have announced your engagement to the world, the next question you hear is.... When is the big day????  Outwardly, my response is to smile and say we are looking at 2014 and honestly that is truly our goal.  However, the time line is something that is not completely up to us. At every turn we are hit with the realization that there will always be pieces of our lives where we will not have total control. Whether we are depending on someone to assist us with personal care, or transportation, or whether we are depending on equipment to function properly, we are often times at the mercy of someone or something else.

When it comes to day to day life, Kevin and I will always need some assistance from others for our personal care needs.  Even though we make an awesome team and we have figured out how to help each other with activities such as dressing, transferring and toileting, this requires a tremendous amount of time and energy and we both desire to have quality of life that includes much more then meeting our basic needs.  It is for this reason we are dependent on others and more importantly at the mercy of "the system"!

For those of you who may not be aware, getting personal care assistance are not free, nor is it cheap. It is for this reason; we will be relying on funding from State and Federal programs. The Developmental Disabilities Administration (DDA) which is funded by the state of Maryland is supposed to provide services to assist adults who are disabled before the age of 22 live as independent as possible in their community.  However, it is not an easy system to navigate and you have to be ready to go to battle with the "powers that be" to get what you need.

Currently, I receive 15 hours of support services a week from DDA and 14 hours of personal care assistance from a program which is funded by Maryland Medicaid.  The hours that are funded by Medicaid provide me 2 hours of assistance a day which allows me to get up, showered and dressed and ready for work. The other hours give me a chance to do things in the community that I need assistance with, such as go grocery shopping, get a haircut etc... It took me about 10 years to get these services, and it was only because of my mom having medical issues which prevent her from being able to help me that I got services when I did.   It took repeated phone calls, applications, site visits and medical documentation to get the services I have today.

We are currently in the middle of the battle with Prince George's County so that Kevin can get the supports he needs in order to be independent.  He currently does not receive any type of support services where he lives, which we have been told that he needs to have in place prior to moving to Baltimore County which is where we plan to live once we are married. Unfortunately the system is reactive and not proactive.  While getting married is a major life event, it is not considered a major life crisis in the eyes of "the system" and they don't see that as a need for funding services. This is one of the major reasons why we are not in total control of our lives.

 My question for the "powers that be" is if you want individuals with disabilities to have the same opportunities as those without disabilities,why is it that we have to fight with the system to be able to do something many others take for granted? Getting married to the person you love is not supposed to be a battle!

Each turn in our lives brings yet a new obstacle and a new battle, yet we remain determined to figure it out "one way or another!"

How we got where we are today......

After posting my first blog entry, I began to realize that anyone reading my blog may be interested in hearing about how Kevin and I got to where we are today.  So here goes.......

A little background on me.....

I went with the Bennett Blazers to watch the 1996 Paralympics

I was born with Cerebral Palsy and I grew up in the years before Americans with Disabilities Act. Back then public buildings were not required to be accessible and public school principals had the option to not accept children with disabilities into their schools.  As a result I was bounced around quite a bit during my elementary school years, and was not able to attend school in my own neighborhood. This experience taught me early on that achieving what I wanted in life was going to be anything but easy.  However, that thought did very little to slow me down.  Thanks to my parents who  battled the school system I was able to successfully attend regular public schools and graduate with the long awaited high school diploma. I performed in choir, was very active in my girl scout troop, and played a wide variety of wheelchair sports as a part of Baltimore's Bennett Blazers.

1989 Father Daughter camping trip with the Girl Scouts

Although I was able to do anything others girls my age did, dating for me was always a challenge. Did not really date much in high school.  I did have a steady boyfriend for about a year while in college.....Spent a lot of time and money on e-harmony, but never got to date any one I met on there.Went on a date with one guy I met on match.com... After that experience I had pretty much decided online dating was not for me and I  decided that I was done spending money to try and find my "Mister Right".

A little background on us.......

This is a picture from out first travel trip

I met Kevin in 2006, we had both signed up to travel to Nashville Tennessee with The League for People with Disabilities.  They offer travel opportunities for adults with disabilities, they make all the arrangements and  provide staff to accompany us on the trip and assist us as needed.

After the trip to Tennessee Kevin and I became friends and continued to stay in touch and went on a few more vacations together, through The League program.  Over time we began to talk more and do things together. Eventually I realized that I was attracted to Kevin and I was interested in getting to know him better. However, in the beginning I resisted the idea since we live 45 minutes a part and neither of us drive. I soon found out that Kevin felt the same way about me, except unlike me he was not afraid of the physical distance between us.  He was convinced we could make it work, "one way or another."

One Way Or Another

Growing up all little girls play make believe. First they are bride in a pretty white dress that gets to carry pretty flowers and marry a man of their dreams..... As girls grow older the young stars pictured in the teen magazines start to enter their dream... if only I could marry him........Then comes high school the dream of having someone to love becomes more real, it is no longer make believe or  a dream it now becomes a mission.  There are many school dances, parties hanging out with friends this is the time girls learn it is not always easy to find some one worthy of their love..... As years go on the roller coaster ride continues to become more turbulent the ups the downs the twists the turns, finding some one worthy of your love is anything but easy.  However, riding this roller coaster is necessary in order to ensure you find the person that is right for you. Some are fortunate and meet the right person early in life, others have to endure the ride over and over before the reach the ending they are seeking. I was one of those girls who rode the ride more than once, luckily my time on the coaster is coming to an end, as I begin planning the rest of my adult life with a man that I love very much.

My name is Thea, I am 35 years old and I have Cerebral Palsy. I use a wheelchair to get around most of the time, although thanks to the help or some amazing physical therapists I am making huge strides and can now walk further and faster then I ever have before.  My fiance is Kevin, he is 30 years old and also has Cerebral Palsy.  Kevin uses a power chair and has limited use of his arms and hands.  We have been friends since October 2006, began dating in June 2010, and became in engaged on April 14, 2012.  Our roller coaster ride has been far from easy.  We have overcome many obstacles to get where we are today, and we will have many more to overcome to get to our ultimate destination, the alter.

I have decided to start a blog to share our journey with others.  I believe that God is ever present in our lives, He has a plan for me and though I don't always understand the plan if I follow Him I will achieve what I am looking for.  Kevin and I like to say that we definitely don't do things the same way others may, but we always figure things out "one way or another"