Monday, July 28, 2014

This is the day the Lord has made!

Psalm 118:24 This is the day the LORD has made; let us rejoice and be glad in it.

I have waited 29 years for this day to come. 

Saturday, June 28th from 11-1, The Shoppes on Main hosted a benefit for Arthrogryposis Multiplex Congenita.

The amount of work that went in to the 2 hour event was incredible but so worth it. 

The community came together in big ways. The donations were generous. For a disorder that is so rare that your regular every day Joe never heard of it, the amount of support and care was inspiring!!

The Mayor of Mount Joy took the time to not only be proactive about raising awareness in our community but he also took the time out to really care... and to help our (those affected with and by Arthrogryposis Multiplex Congenita) voice be heard. 

Mayor Tim Bradley proclaiming June 30th Arthrogryposis Awareness Day in Mount Joy, Pa
For me, June 28th was more than raising money. It was finally being heard. I felt as if I've been screaming at the top of my lungs for 29 years and finally was heard. 

I've always been stuck in in the middle of being either too disabled for somethings and not disabled enough for others. That seemed like it changed that day. 

Now... I can't take all the credit. 

This lady...

My mother got the ball rolling years ago. The things she had to fight for for me is admirable. 

Share and be aware: A letter from my mother. 
"I’ve donated money for many great causes. I’ve worn colors to raise awareness for heart disease, kidney disease, cancer, and LGBT rights, which affect many of my friends and family. I’ve worn colorful bracelets for causes too varied to mention. Now I ask you, my friends and colleagues, not for your money, but for your mindshare. It’s rare I share my personal story, but in preparation for June 30, National Arthrogryposis Awareness Day, here goes.
I won’t speak for every woman who gives birth, but many take conception and child birth for granted. We decide we want to have a baby, we get pregnant, and we expect that nine months later we’ll deliver a perfectly healthy baby. I was no different. I had it all planned. Because I experienced challenges with my reproductive system from an early age, I was on a tight schedule. I thought if I got pregnant the summer before my Junior year in college, I would deliver after Junior finals and would be able to juggle a baby and my final year of college with planning and finesse. It never occurred to me that after what seemed like a perfectly healthy and textbook pregnancy I would go into full labor six weeks prematurely and give birth to a daughter with multiple health challenges, the primary being a rare condition called Arthrogryposis Multiplex Congenita.

For those of you who know me, I do love a long story, but I like to write in bullets. Here’s how the first five years of my daughter’s life went, not excluding six major surgeries.

1st opinion: Your daughter is not going to survive.

2nd opinion: Your daughter is going to survive, but she is going to be severely mentally disabled. (Children’s Hospital at University of Tennessee, Knoxville)

3rd opinion: Your daughter is going to have normal cognitive skills, but she will never be able to walk or care for herself. (Orthopedic Specialist Group, Orlando, FL)

4th opinion: Your daughter will be able to walk, but only with aids such as braces and crutches. (Shiners’ Hospital, Philadelphia)

5th opinion: Your daughter will be able to walk with no aids with a regular physical therapy regime. (Children’s Hospital of University of Pennsylvania)

6th opinion: Surgery will allow us to release her elbows to allow for limited range of motion and development of daily living skills. (Thank you, Dr. Gerr and A.I.duPont Children’s Hospital!)

Early Childhood Psychologist: Your daughter has above average IQ and needs to be challenged with early entry to Kindergarten

School district: We are not equipped for special needs child. Your daughter will not be able to attend early entry Kindergarten.

School Board: Your daughter can be enrolled in early entry Kindergarten; however, we are not equipped for special needs child. Your daughter will need to attend class for developmentally delayed children at separate campus.

PA State Congressman: Your daughter WILL be mainstreamed and enrolled in early entry Kindergarten. There will be an aide to ensure she has the support she needs to fully participate in the Kindergarten program. (It’s amazing what a little influence from the ACLU will do.)

It was a roller coaster ride of emotions, scares, surgeries, and battles with “the system”. Most doctor appointments began with me spelling Arthrogryposis. The most respect I ever had for a doctor was when he actually took his medical encyclopedia and looked it up. Imagine going to a physician for help and he has never even heard of the condition, much less knows how to help address it.

Arthrogryposis, or arthrogryposis multiplex congenita (AMC), is a generic term used to describe the presence of multiple congenital contractures. The word arthrogryposis, arthro, joint, gryp, curved, literally means curved joint (implying that it is fixed or stuck in the curved position). Thus, arthrogryposis multiplex congenita means curved (fixed) joints in many (multiple) areas of the body, which are present at birth (congenita). A contracture is the limitation of movement of a specific joint, in other words, a joint that does not have a full range of movement. The contractures in most forms of arthrogryposis are usually non-progressive and involve more than one body area. The word congenital simply means that the contractures are present at birth; that is, they have occurred or been produced before birth.

The good news for me was that the worst it would ever be was at birth. The bad news was that it was a rare condition, not genetic, and plans of treatment were not standard. I had to search for answers and for doctors who could provide my daughter with as normal a future as possible.

I’m happy to say that [29] years later, my daughter, Ashley, does live independently and is mother to my beautiful and perfectly healthy granddaughter, Aria. Her limited range of motion in her arms prevents her from scratching her head, reaching into top shelves, raising her hand in praise – but years of not taking “no” for an answer mean a life of independence for her.

[Twenty-nine] years ago I did not have access to a computer, or the internet. I had to go to the library and I lived on the phone tracking down resources and possibilities. Today, I’m happy to say there is an organization dedicated to raising awareness of this disability and providing avenues of support for the families of children born with AMC,

Saturday, June 30, is AMC Awareness Day. Ashley and I ask each of you to participate, wear blue, and help raise awareness of this physical challenge. Find out if there are children who are in your community who are challenged with this condition. Their resources are not abundant; they travel far for assistance. Do this not only for those who are affected by it directly, the children and the medical community who support them, but for the community at large so we can be more fully educated and increase our sensitivity to diversity.

'AMC is not a roadblock, it is simply a different path.' - Kaman"

Her courage, fight, love and determination combined with God's awesome grace is what made me the woman I am today... and I will forever be grateful.

It took me a long time to see my disability as a blessing. I still struggle to see it at certain moments on a daily basis but I do know it's been a gift to many and I've been blessed from it as well.

I am so thankful to my support group. My list is too long to mention them all (which p.s. I awesome. God has blessed me with a huge list of family and friends who have supported me. Not everyone has that. I DO NOT take it for granted) but I do want to take a minute to focus on a few who made this particular day a success. 

Jackie Werts. This woman has been a huge blessing this year to me and Aria. She's given me a job where I can still focus on Aria and all her needs. She's given me a friendship that has been filled with nothing but support, loyalty, and love. She's a boss who cares about her coworkers and she's a friend who'd give the shirt off her back if she saw you needed one. I have nothing but respect for this woman (and her kids are too stinkin' cute). I am so grateful she let me do this benefit at The Shoppes on Main and was so supportive of it all. 

The vendors in The Shoppes on Main were awesome. Some worked tirelessly the night before helping me set up for the event. Some worked tirelessly during and after the event. Many generously donated products.. products that they worked hard on. I couldn't ask for a better group of strong and supportive women to be my coworkers. 

This family. I met Sarah when I was pregnant with Aria and went to OT and PT to prepare myself for Aria's arrival. From day 1, Sarah was my own personal cheerleader. The support from this family has been astounding, I don't even know how to put it in words. Sarah baked the most delicious cupcakes for the event and even accidentally dyed herself blue doing it! 

My AMC family. I have never officially met anyone else with Arthrogryposis. My heart was so full meeting with these kids and their families. I am so grateful they came out and were able to enjoy the event honoring something that has affected their lives. 

Last, but not at all the least, my family. They tell me what I need to hear, not what I want to hear. The love of a family is one of God's greatest blessings and let me tell you, God blessed me big time.

June 28th, 2014 was a long time in the making and I saw God's hand in it all. This is just the beginning. I got the community of Mount Joy's attention and the Governor of Pennsylvania, Tom Corbett's attention....

This was the day the Lord had made and I rejoiced and was glad in it!

Thank you to all those who supported the event!!!!!!!!!!!!!!!!!!!!!!!!!!!

Monday, February 10, 2014

The proof is in the pudding

Social Security wants me to prove I am still disabled.

...I know.

Bear with me.

One of the many ways they do so is to send a mound of paperwork for you to fill out. The paperwork consists of questions that not only REMIND you that you are disabled (juuuust in case you forget) but get too personal and leaves you with no shred of privacy.


I am an ass.

Here is my response to the one question about my daily activities ("Please list in great detail what you do in a typical day, for example: I get up around 7a.m, take a shower, get dressed, make breakfast, etc" )

"I wake up around 7:30, try to pull down my pants with my dressing stick just in time not to pee myself. I then make breakfast for both me and my daughter and just about every time I either spill something or burn myself. I then shower the both of us and get dressed where I usually end up just about strangling myself with my bra because of the way I need to put it on via my dressing stick. I get my daughter ready and thank God that she's able to do most of it by herself now. I then go to work where I struggle with almost every task I am given. I hope to God my whole shift I don't have to use the bathroom because I sometimes get stuck for a long time fighting my pants. I then go home, make dinner where I, again, either spill something or burn myself... and then prepare myself for bed. "

Then they ask, "What are your hobbies and interests?"


I had to refrain from a few more smart ass remarks. One was enough.

I am tired of having to prove myself all the time. I have to prove that I am a functional disabled human being every.. single.. day. I then have to prove that I am fully capable to take care of Aria and myself. Then as soon as I prove myself it's time to prove that I am actually disabled. Where is the balance? Why can't society see who I am really? An independent disabled woman who struggles; a functional handicapped person. In my experience, you either get labeled fully capable or fully incapable. I either have to prove I am capable or not... and when one is proven the other isn't accepted.

I am both.

I am capable... and I am incapable.

If disability sees that I am not drooling and bedridden, they may take what I have already earned from working and have paid into SS. If they see me as "drooling and bedridden", they may deem me as unfit to parent. In the State of Pa, there are no laws protecting me as a parent. I am constantly having to prove myself worthy of many titles.. Mother, worker, handicapped....etc.

The only label I don't have to fight for is "daughter of the King". No matter what, I will always be His... and that sure makes the rest of my burdens a lot easier to deal with. I struggle sometimes. I fall often. He is ALWAYS with me and I ALWAYS feel His love... even when I may not feel it from the rest of the world.

Wednesday, February 6, 2013

Frozen Yogurt Mini Cones

Lately I have been asking Aria what she wants to eat, instead of just making something and shoving it in her face. MOST of the time she chooses pretty healthy... though sometimes she asks for things at odd times (e.g. chicken and french fries for breakfast). 

This morning wasn't any different. 

"Aria, what do you want for breakfast???"

"Um... uh.... ICE CREAM!" 

"How about some eggs?"

"No no, Momma... Ice cream, PLEEEEEEEEEEEEEEASE!"

Meanwhile, she's got her head in the cupboard looking at the mini ice cream cones I had bought. 

How can you say, "No." to this face!!???

So, I decided to get creative and the end result was not only ridiculously easy but delicious and healthy!!!!

Frozen Yogurt Mini Cones

Yogurt of choice (I used strawberry... I think next time I will try greek yogurt) 
Joy mini cup cones (as many as you'd like)
Sprinkles (optional)

Fill cones with yogurt.

Places cones on a plate or baking sheet.

Place plate or baking sheet in freezer. Let it sit for 1 hr.

See??!!! Easy!!!

I didn't add sprinkles this morning because it's breakfast but I don't see why you couldn't add them to an afternoon snack!

I think it's safe to say we have a very pleased costumer. I'll be doing this again!

Thursday, October 4, 2012

In honor of National Domestic Violence Awareness Month

There’s something I wanted to tell you but don’t know where to start
I wish my words could save you from deceptions of the heart
I guess the first thing I would say is, always recognize your worth
If I’ve never said before, you’re too precious to accept any hurt
Make no mistake, your heart will break, sometimes he’ll let you down
But make sure his desire is to ease your pain when he causes you to frown
And if he ever hits you, I mean the very first time he lifts his hand
You turn around and leave right then, because he is not a man
I’m so sorry I never showed you, by the way I lived my life,
what it truly means to be a valued, loved and cared for wife
You never should have witnessed the beatings I would take
If I could do it over, oh the many changes I would make!
Trust me, never, ever feel that you must stay there for the kids
just think of how terrible it was for us every time I did
Think of how you wished that we had struggled all alone
Than to live in fear, no sum was worth the terror inside our home
Baby girl, please know that I loved you more than I can ever say
And I would do anything to have never failed you in this way
HE had the problem I realize now and I need for you to know
You played no part in my bad choice, be at peace, move on and grow
I pray you never fall victim to fear, my dearest
keep your head up and be brave
My last prayer is that you’ve heard my words
an echo from the grave….
By Danee Riggs

October is National Domestic Violence Awareness Month. I don't need a month to be aware of it. I am reminded every day that I am a survivor and when I look at my beautiful little girl I am reminded that I must do everything in my power to make her aware. I hope to raise her with awareness of the warning signs, raise her to love herself and her Heavenly Father, and most importantly that she can always come to me no matter how bad the situation. I hope I can instill in her an unbreakable confidence in her self worth.  I don't have all the answers on how I'm going to implement my plan to raise a confident and yet grounded girl but I will try my best.  
I've seen the commercials for a few years on Dove's movement for self-esteem. I've admired their efforts since day one of the campaign but now having a little girl... I'm even a bigger fan. They have the right concept. There is a universal increase in beauty pressure and a decrease in girls' confidence as they grow older. It's a shame because we are all created in His image and He is beauty; He is amazing. Every girl, every woman, is beautiful. 

1. having beauty;  having qualities that give great pleasure or satisfaction to see, hear, think about, etc.; delighting the senses or mind: a beautiful dress; a beautiful speech.
2. excellent of its kind: a beautiful putt on the seventh hole; The chef served us a beautiful roast of beef.
3. wonderful; very pleasing or satisfying.

I tell Aria every night as I put her in her bed that she is beautiful, she's smart, and that I love her.  She is beautiful and will always be beautiful.  God never uses one’s outward physical appearance to determine beauty. When the prophet Samuel examined Jesse’s sons in search of the next king of Israel, he was impressed with Eliab’s appearance. God told Samuel: “Do not consider his appearance or his height, for I have rejected him. The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart”. Nothing in a person’s outward appearance impresses God. God looks upon the inner beauty, the beauty of one’s heart. 

 This is what true beauty looks like..

A look from your child that says you are their everything.
Being silly!
Heart of a Grandparent.
Showing your disability who's boss.

Friendship based on unconditional love and support.

A Mother's fight for equality for her little girl.
The laughter of a child.

Our society has a very distorted and  shallow idea of beauty. And if you don't see it as being a "big" problem, tell that to the teen girl who got plastic surgery to fix her ears, nose and chin. She was teased about her physical appearance since she was 7. 7!!! Kids shouldn't be concerning themselves with such petty things.... and where do you think these kids learn their behavior from? Parents. Every time you giggle about someone's "big belly" at the local Wal-Mart, you are setting an example for how your children are to behave. Or if you yourself are the bully and pick on your kids outward appearance or odd behavior... they see that and absorb it in to use at a later time. 

And those bullies? Most turn into abusers...

54% of students said witnessing physical abuse at home can lead to violence in school. It's a viscous cycle. Domestic violence in the home can create bullies in the school that then can create more domestic violence in the home later on in life. 

We need to raise awareness. We need to prepare our children for not only their personal future but society's future. 

Tuesday, September 4, 2012

But as for me and my house, we will serve the LORD!

Joshua 24:15 "But if serving the LORD seems undesirable to you, then choose for yourselves this day whom you will serve, whether the gods your forefathers served beyond the River, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the LORD."

As Aria gets older and uses her words more effectively, I realize just how important Joshua 24:15 is. I WILL serve the Lord. I WILL do my best to raise Aria to serve the Lord. 

Lately, I've been in search of employment in order to find a decent home for Aria and I... a home that Aria deserves... a home where we'll be safe and comfortable so we CAN serve the Lord. 

I'll be honest, it's been exhausting. I feel there is an angry clock running behind us. We have only until Nov to figure something out. To date, I have 17 job applications out there and have contacted triple that amount of apartments. Most apartments want your yearly income to be $17,000... I'm at half. I’ve applied to a local affordable housing complex and they turned us down because we didn’t make enough. They told us if we were able to have someone say they pay us (but not really) a certain amount of money a month then we could meet the income requirements. It felt a bit dishonest. Why is it that I wasn't surprised??? There are too many people that are taking advantage of the "system" and it makes it hard for those who legit need a boost. 

Listen... I am NOT looking to be spoon fed. I just need a boost. I am willing to work. However, if SSDI deems me disabled and unable to work, why do I have to work to stay afloat? Now.. please don't hear me wrong. I love to work. I especially love it when I get to work with people. I'd much rather work to earn my living. Society makes it difficult for me to work. I can be slow sometimes... I once was fired from a job because I couldn't "push three wheelchairs at a time to make the transferring process faster". So, if SSDI deems me "unable to work","affordable" housing should actually be affordable and accept me...?? One would think.

I know of someone who has lived in affordable housing with an under the table job and a boyfriend who makes $20 an hour but because she claims she's single and hides his boots when there are house checks, she gets to take vacations to Disney every year and buy her kids Ipads. And when I see things like this, it really makes it hard for me to serve the Lord. My anger and frustration gets in the way of serving the Lord. My raw emotions get in the way of serving the Lord... and it's not fair. It's not fair to the Lord who gave/gives us so much. 

So, I need to step back... take a deep breath... and be thankful... be genuinely grateful for the blessings He has given me and I honestly can say I am. I've made quite a few ugly mistakes in my life. I've sinned something serious in my early 20's. I've been forgiven and He has always been with me even when I wasn't. He loves me and Aria and wants the best for us both. 

What does this all mean???!! 

I plan on working harder to serve the Lord even when life seems to get in the way. Every moment is a great moment to serve Him and I hope that you too will work with me in serving Him and not letting life get in the way.

On a lighter note: This is by far my favorite moment in life... 

Wednesday, March 14, 2012

Mmm mmm s'more!

I stumbled across an amazing looking pie the other day on Pinterest. Seeing as how I am watching what I eat (most of the time), I decided to come up with my own version.

A 135 calorie a slice version (depending of course on how big your slice is) of a S'mores Pie.

How could it not taste like  cardboard, you ask?


Ashley's S'more Pie

Low fat Graham crackers(as much to layer the bottom of your crust)
1 Reduced fat Pillsbury pie crust
1 jar of Fluff
3 tbsp Hershey's Dark cocoa powder
1 bag of dark chocolate chips
1/2 cup Skim milk

Cover the bottom of the pie crust with graham crackers. Bake pie as directed on the package. While it's baking, heat your skim milk in a pot and bring to a boil. Add the cocoa powder and whisk until dissolved. Drop the heat down to low and melt 3/4 the bag of chips.

Take pie out of oven and set oven on broil. Poor the melted chocolate into the pie crust. Cover the top with fluff and stick it back into the oven. 5-7 minutes depending on how dark you like your marshmallow.

Need I say s'more?


Thursday, March 1, 2012

Well, this seems like a nice place to hang out for a while...

WARNING: This may or may not be TMI for some.

Oh, well!

Nothing like spending an hour plus stuck in Kmart's bathroom to really lift your spirits. Occasionally, my clothes and I aren't on good terms. Some days we struggle. This past Tuesday was one of them. Like a dummy, I drank a TON of water before I left to go study and pick up a few things from the store. Once I got to Kmart, my bladder was screaming obscenities and I heeded it's demand.

Before I continue, let me give you an idea of what I'm working with...

A- The bathroom stall was small. I've seen better accommodations in prison. (This was the "handicap" stall)
B- The temp in there felt like the heat was blasting at 90 degrees.
C- It smelled like death.

Now, these 3 environmental factors aren't conducive for me pulling my britches up. 5 minutes go by and the heat alone is making me sweat. 20 minutes go by and I'm halfway there but the struggle has drenched me in sweat making it more difficult to slide my pants up.. as time goes on it gets harder and harder for me to have any Christian thoughts. I start getting mad and thinking about how long I'd do in jail if I just walked to my car with my butt hanging out. Ok, so probably not a good idea... Then I think, well if someone comes in, I'll just ask for help. (This hasn't been the first time I got stuck in a bathroom. Last time my date left thinking I sneaked out. Fun times..)

20 more minutes go by and nobody. 

Now, my choice is to cry... so I cry... and cry... and while I cry, I pray.

Dear God,
Please, please... help me. 

As I'm crying my body starts to cool down, making me less sticky, and after another 10 minutes I try again.


God listens to us... He loves us... The power of prayer is so great and this is my testimony of it.