Saying Yes To A Dress

My last post caught you up on the adventures of looking for a venue to accommodate the unique needs of our wedding,  The next piece I need to fill you in on is shopping for a wedding dress.

This was the part of the process that I looked least forward too. I am not a fan of any type of clothes shopping let alone shopping for a gown. At the malls fitting rooms are not always wheelchair friendly.  If they happen to have a stall that is large enough for the wheelchair to get in it is usually by the store for extra storage space.... or as a dumping ground for the clothes people don't want, or the worst is when it is in use by someone that does not need it, even though their are 6 other available ones that I can not fit in.  Most times I just buy the clothes, bring them home, try them on and if they don't fit return them.  That approach was not going to work this time around.

I decided to make David's Bridal my first stop in my quest,  When I made the appointment I was upfront and told them I am a bride that uses a wheelchair, so this will  not be your typical appointment and i will probably need more time then most brides.  I was told on the phone oh that is not going to be a problem..... I thought yes ok, you say that now we will see if you really mean it. I was not holding my breath and honestly had no expectations about finding a dress after all, it was only the first stop.

My appointment was a Sunday in April which meant not only was it packed with other brides searching for their perfect dress, it was also packed with teenage girls looking for the perfect prom dress. (future brides keep that in mind when going to David's) When we checked in at the podium the person seemed kind of surprised I was the bride, go figure. But I was told someone would be right out to get me.

After waiting for about 20 minuets past my appointment time someone did come out to take me back to a room.  They said they had to for a room to open that I could fit in, because they did not know I was in a chair.  Yes I did tell them that when the appointment was made, I guess it did not make it to the scheduler... not surprised.

Once we got to to the fitting room which was just big enough my chair, 3 of my bridesmaids and close the door.  I was greeted my a very nice lady that said she was going to be helping me today. I asked her if she had ever  worked with a bride who used a wheelchair, she was like nope, this is new to me.  She then politely asked me how she could best help me when it came to getting the dresses off an on,  I said just let my friends help me and we will be fine.  She said ok an went to pull the dresses for me.  

After getting I first gown on, which was a bit of an acrobatic experience for my friends she told be to go to the room next door to look in the mirror.  This room was a double wide room (I think it is normally used for alterations) with 360 degree mirrors. Just what every woman wants to see.... Anyway, After looking at at that dress in the mirror and going back to the small room to put on dress number two and repeat the process my matron of honor was like this is stupid this room is so much bigger and they are not using it why don't we stay here.  The woman was like sure why not.  We continue the process of trying on dress for the next hour, Sara Colleen and Lauren got the system down to a science an the staff from David's even jumped in and was helping support me while we were zipping zippers etc.  She was very attentive and quickly learned the style of dress that worked best for me.  She even offered suggestions of her own.  All in all a very successful day and I indeed said YES to a dress.  See below:

Come on did you really think I would give that away!

Yer another example of how we get things done one way or another!

Every Bride and Groom is Special!

Ok so I realized this weekend I have not updated my blog in over a year!!!! So much has happened  I have a lot to catching up to  do! It may take more then one post to do so.

I believe in my last post I had just attended my first bridal show. At the time I was fairly sure the bridal world was not ready for a bride and groom who were both in wheelchairs.  Thankfully I was wrong!  We now have a venue, my dress, bridal party dresses, a photographer, and a DJ!

Searching for a venue was intere
sting to say the least. Finding place to accommodate a bride and groom who both use wheelchairs and a guest list of over 200 with about 12 of those guest also using a wheelchairs was the first mission to accomplish. Needless to say watching peoples faces when I questioned them about things such as do we have to use long tablecloths, (cause they will get caught in wheelchairs) what the bathrooms look like, can the door be closed with a wheelchair inside  and how can we accommodates males who will be coming with female care providers or aids were three question I am pretty sure they don't  hear very often. However these were very important questions for us to have answered.  I also never thought about not being able to use a bridal suite, the ones I saw were  not accessible for wheelchairs, even I took that one for granite.

Fortunately, after a bit of searching, we did find a venue that was able to accommodate our unique needs.  Michael's 8th Avenue was intimated, they treated us like every other bride a groom, they did not focus on the problems or the fact that "its so special and amazing" that we are in wheelchairs and we are getting married.  (I mean we are special an amazing! But wheelchairs are not the reason!)

They have given us the entire building for our special day! We have three of the four ballrooms and access to all four bathrooms, which means we can make a "family" restroom and not have to worry about the awkwardness of men in the women's room or vice versa... It may sound like a little thing but believe me to those who find themselves in that situation, it was less thing to worry about!

They are also creating a bridal suite for me! Since it is an older building there is not an elevator, however the only thing upstairs is the bridal suite, so they are going to make one in the small ballroom for me.  I get to get ready in a special room like every other bride.

That is the ultimate goal for Kevin and I we want our day to be special, not because we have disabilities. But because every bride and groom deserves a special day all of their own.  And one way or another it will be!

People with Disabilities DO Get Married

Today I went to my first  bridal show in Crofton MD.  It was a smaller show, but it was a good starting point for me. Of course as with every outing and adventure I embark there are always moments when I am reminded that even now in this day and age accessibility for people with wheelchairs is still not an automatic thought when it comes to planing and setting up a public event.

We pull into the parking lot of the country club, I am pleasantly surprised to  find plenty of accessible parking spots available.  However once we got out of the van we discovered that the organizers of the event had set up two tables at the main entrance, both of which blocked off access from the ramp to the door... (I guess some people still think people in wheelchairs don't get married) After I got the attention of the organizers and brought it to there attention they quickly moved one table and cleared the way! I recorded that as a teachable moment. Maybe next time it will be thought about before it is needed.

Once inside the show the show the first table we visit is the table of the country club.  When I asked the lady how is your accessibility? She gave the usual reply of course we are fully accessible.  However, I told her  that I needed a place that could hold 200 guests and  could accommodate  not just one wheelchair, but 11...... the look on her face told me she was not sure... but said oh sure we can do that.  After walking around the club it became clear that she does not realize how much space 11 people in wheelchairs require.  Although the staff and the room were incredibly nice, there was no way there would be enough space.... I want all of my guests to be able to be comfortable and be able to move around and not have to worry about running over someone's toes!!!! Since that was the only venue represented it was clear that the search will continue..........

In addition to the venue, my other concern is finding a photographer that will be able to be creative and think out of the box when it comes to photographing a wedding where the bride and groom are in chairs. Have you ever notice that all the examples  photographers bring you never see people in wheelchairs........ That had never occurred to even me prior to today......... so now when talking to photographers one of my questions will be tell me about your experience shooting weddings for people with disabilities. And much to my surprise one of the photographers I talked to actually had a good deal of experience so there are some people out there that realize people with disabilities DO get married!

As I said today was just a small sampling of the possibilities out there...... The hunt will continue ultimately the wedding will eventually be planned and Kevin and will achieve our dream "one way or another."

Facing the Hurdles Together

Ok so I know it has been a while since my last post....... Summer seems like it has flown by, it is hard to believe in just a few weeks kids will be returning to school, the weather will turn cooler (we hope) and the leaves will soon begin to change.  In the weeks since my last post Kevin and I did take the first step in planning our future together........

Usually the story goes boy meets girl, boy and girl fall in love, boy pops the question, boy and girl plan a wedding and get married, boy and girl move in together and live happily ever after. In my story however there is an added chapter, boy and girl sit around a conference table for 3 hours with 10 other people and find out where to start.........Since Kevin and I both require assistance with our activities of daily living just picking up and moving is not an option for either of us.  We will both rely on the support of others to achieve our happily ever after.

The first step in the process was to get everyone on the same page, doing this required getting all the  people that provide services to both of us in the same room at the same time.  That step was not a complicated as I thought it would be, fortunately we were able to get a date that worked for all the individuals that needed to be there.

During this meeting, we were able to clarify what services we currently receive, what service we are eligible to receive,  and what services we are not eligible to receive. That sounds simple enough right? I wish it were simple. The first hurdle we needed to over come in the meeting, was to make sure everyone present understood what our goal were and what we wanted.  In the meeting we were told that some people who have disabilities and need services choose to just live together rather than get legally married so that they do not have to combine their incomes for the system and jeopardize losing services they need.  Kevin and I had heard this advice before the meeting as well, but after discussing it together we decided this was not what we wanted to do. We want to live our lives as a married couple.

The second hurdle was for us all to understand what service we could and could not receive. We found out in the meeting that Kevin is not eligible to receive service from the Developmental Disabilities Administration (DDA) because he is not considered to be in a state of crisis. In there eyes, since he is not homeless, not in physical danger, and his heath is not at risk, the does not need services.  They do not take in to consideration that fact that wanting to be married, have a job and be a productive member of society is what Kevin wants and needs to be happy and feel good about himself.  As a result, Kevin has chosen to receive services through a program called The Living at Home Wavier. This program will provide him with personal care support but not vocational/job support. Al
though this only helps  to achieve some of the goals it is a start.

The third and final hurdle was to find out what kind of timeline we were looking at as far as when Kevin would be able to move to Baltimore County.  We were happy to hear that Kevin's services would hopefully begin by the end of August in PG county and would be able to be transferred to Baltimore with as little as 60 days notice.  This means we can choose our timeline and we will not be at the mercy of the system as far as that piece goes.

So where does that leave us........... we can now start to plan not only our wedding but also our lives together! A whole new set of hurdles awaits us......... But as always we do what it takes to get over them, we will reach the finish line, one way or another!

"Every person is a new door to a different world." (Part 1)

"
Every person is a new door to a different world." This is a quote is from the movie Six Degrees of Separation, but when I read it I couldn’t help but think about how true it is and how it can define many experiences from my life.
Throughout my life I have had the chance to get to know many people in a variety of settings. Whether it is in school, girl scouts, teammates, therapeutic rec groups, summer camps, work, chance meetings, my friends have done more than help me get by in my life they have enriched my life and provided many opportunities to be like everybody else.

As I said in an earlier post, I attended many different elementary schools in my 5 years.  Half way through my fourth grade year, I was fully mainstreamed into yet another school.  In January I left the Battle Monument School, which was a full special education school for kids with a variety of disabilities and sent too Fullerton Elementary School in Parkville. This school was not in the neighborhood I lived in I did not know any of the kids or teachers there......As you can imagine I was very nervous and intimidated at the idea of going from a class of 10 kids to a class of 25, and not only was I the only fourth grader in a wheelchair, I was the only kid in the school in a wheelchair... The two things I was most unsure of were two things kids love the most, gym class and recess.  There was no adapted playground equipment at this new school. I was not sure what I would be able to do, sit and watch was what I was expecting to do.  I quickly figured out I would get to do more... I made friends, and even at the age of 9 they were not afraid to help me figure things out. Once the weather came and outside recess began it didn't take long to find things to do on the playground. I was friends with a set of twins, Tracy and Adrienne Senft who quickly figured out a way for me to play hopscotch with them. I would toss the rock, and they would hold on to my chair as they pushed/hopped the pattern if they stepped on a line I was out.  I don't have many crystal clear memories of my elementary school years, however that is one that has always stuck in my mind and I think always will...

As life went on girl scouts provided many moments where new doors were opened by many friends. In seventh grade when I became a cadet I joined a new troop. It was run by a husband wife team Karen and Dave Modeski, who like my friends in elementary school were not afraid of the challenge of adapting activities so that could fit in and participate in activities like the rest of the girls.  I went on every camping trip and did the same chores that were expected of everyone, no excuses accepted.  This attitude quickly filtered down to my friends in the troop! I was treated the same and making things work "one way or another" was not the exception but the rule.   In fact on one of our camping trips, we wanted to hike to the water... We quickly figured out that the trail that went to the water was in no way wheelchair friendly. There was no way the scooter I used at the time could navigate the boulders and the logs that covered the trail.  In an effort to not have me miss the time with my friends, my mom with a little help from others walked me down the trail around the rocks and over the logs, until we got to the water.  After this trip one of my friends and fellow scouts Lori Williams (a ninth grader at the time), decided that for her silver award (the highest award you can get as a cadet) she was going to create a wheelchair accessible trail to the water. She coordinated all that needed to be done and as a troop side by side with our dads at a father daughter trip we cleared the trail so that all scouts with and with and without wheelchairs could hike together.

I hope these two stories illustrate of how when people are accepting of one another, disabilities do not present problems, just a reasons to find creative solutions!

As you can probably guess I have had many more examples that I can and will share..... Please stay tuned for part two.

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"