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!!!!!!!!!!!!!!!!!!!!!!!!!!!