Hidden Pain and True Intentions

I began this blog many years ago. In fact, almost 13 years ago this week. A lot has changed since this blog began. I thought I would do something in this world to do good for others, despite the challenges I faced all my life growing up. I have, and I did. It wasn't without the help from those along the way and those who have stuck by me the entire time.

Many of you know the life of abuse, trying to meet the standards of what others think you should be. The ironic part is to understand that the people who say they love you and the ones who are to care for your cause the most are the ones that hurt you the worst. I am not sure what I am supposed to be learning, even at the age of 51 going on 52.

I have experienced the unbelievable in my life. From greed, envy, lies, deception, being used and disposed of like you are a wrapper that holds a piece of candy and a hamburger you would eat. Discarding people based on the pure bases of money and greed alone. It's not truly about helping people; it's about benefiting one's self. Those people will burn in an eternal fire they have yet to face. Deceiving others who are so desperate to make their own happiness. Trusting those who have lots of money and no strategy preying off them just to make a buck.

I have learned today what real evil in the face of good does. I have learned how people could crucify a man that had no blame only because He wanted to change the world and give them a life worth living. I indeed saw BLACK, GREED, SELF-SERVING BEHAVIOR today in its utmost RAW FORM.

It is an attack by the darkness of this world allowed by those who don't know the true God in this world and do not know His power, and they can't comprehend it. It's a BLACK that ruins relationships, marriages, careers, livelihoods. It's a blackness I saw hover over me at the age of 13 in my bed, paralyzed huddled undercover, watching as a black, evil red-eyed demon came over me, blinding me, terrorize me from the inside out. I had just made a profession of faith in Jesus that year and was battling being molested by a faceless beast I still can't remember. Maybe that was what I saw in my room that night? Life's reality was distorted, and I was sheltered, yet was living a life of hidden hell I was never to speak of. Over time I began to express my pain and anger after I was out on my own. Counseling taught me what normal should be, yet I gravitated to" my normal" dysfunctional relationships, never saying anything to anyone because of shame and failure I would be so "stupid". I was too beautiful and smart to go through such things. My experiences led me to be the fighter I am today. I no longer take flight and run; I stay and fight because I will no longer be abused or taken advantage of. However, I still wear my heart on my sleeve, making myself vulnerable to those who may or may not be who they say they are. I don't judge unless you give me a reason to believe. But when you are found guilty in my eyes, you will rue the day you ever crossed me.

Today, I saw and felt the betrayal of those who I have helped throughout their time with me turn on me, AGAIN, and disregarded the sacrifice I made to help them be successful. Would those who have discarded us benefiting and excluding at the celebration and glory of achievements, where would they be without the people who helped create their path to success?

I might not be everyone's cup a tea. BUT BOY...sometimes you just don't know when ya gotta good thing. I believe that bad things happen to good people sometimes because they are doing something right. The hardest thing is loving them anyway and showing people that sometimes you are much more than you than others are willing to recognize.

Job lost everything, but he stayed faithful, and God blessed him with much. Kind David sinned and lost his child, suffered the consequences of his actions, but God still used him to do great things. Solomon fell for a woman and told his secret, suffered consequences, yet left a great legacy. Jacob did EVERYTHING right, yet he was sold by the people who said they loved him the most and God blessed him. Abraham was told to sacrifice his own son, and because his heart was right, God spared his son and blessed him with great things. Paul was named Saul, an evil tax collector who followed Christ and stood for what was right and was sacrificed upside down after being thrown in prison for NOTHING he did wrong, only for believing in what was RIGHT and Godly.

All these people mentioned in the most historical book on the planet, the Bible left a legacy that people over 2000 years later remember and live by. Believe or don't believe. I choose to believe because I honestly really have NOTHING to lose. I am NOT A SAINT, I AM NOT PERFECT, I GET MAD, I DRINK, I CUSS, and one thing I do know... IS I AM FORGIVEN AND SAVED BY GRACE! People in this world are NOT MY JUDGE! GOD is MY JUDGE! He will judge my Heart; HE CARES NOTHING about politics, other people's expectations of you, how much money you have, or the GOOD DEADS you DO. He cares about YOUR HEART! IF I DIE TODAY, I WANT PEOPLE TO KNOW MY HEART, NOT HOW MUCH MONEY I HAVE, CARS I DRIVE, CLOTHES I WEAR! BUT IT IS WHAT I DID FOR PEOPLE! You judge me all you want... It doesn't MATTER WHAT YOU THINK! I ONLY CARE ABOUT ONE THING. What I did in this life to show that GOD truly works through people that are NOT PERFECT! REMEMBER THAT! NO ONE IS PERFECT!

Announcing!!! Bridge the Gap - SYNGAP Education and Research Foundation

I am excited to announce our new organization called Bridge the Gap - SYNGAP Education and Research Foundation.  Our mission is to serve, educate and fund research for families coping with the effects of SYNGAP mutations.  We are the first foundation to specifically raise funds for research and awareness for SYNGAP.  In the coming months we will be focusing on development and fundraising.  Co-founder Olga Bothe and myself will soon announce our Board Members and our Medical Advisory Board and the launching of our new logo and website.  It will be full of information, patient stories  and current goals of the foundation along with valuable resources for families.  Please check out our Facebook page and Twitter Pages for current information.

Facebook Information Page:  https://www.facebook.com/Syngap1?ref=hl

Facebook Page: https://www.facebook.com/bridgesyngap?ref=aymt_homepage_panel

Twitter Page: https://twitter.com/bsyngap

 

We have launched our first fundraiser for the Bridge the Gap and would love to see your pictures on our new donor wall we are building. 

 

Check out our wall!http://www.memsaic.com/v2/01D4C9B2A6E3D3/wall

We also just joined #giveRARE to raise money for my #raredisease. You can sign-up your nonprofit at www.giverare.org. Let's do this!

 

After Beckett's Functional MRI - Texas Children's Hospital

This is all for this little boy and his friends with SYNGAP.  These precious people can suffer from many types of seizures, intellectual disability, the ability to speak, sensory disorders and many more symptoms this rare neurological disorder.  We want to help theses individuals live better lives and with your help they can.  Research is going on now to find better therapies, but funding is hard to find.  Please help us help them. 

 

Our goal one day is to be able to help families off set the cost of the continuous burden of medical expenses and provide resources to relieve the stress of raising a child or being a caregiver of a specials needs individual with SYNGAP.

 

Please Share and Tell people you know about us.  There are more individuals out there yet to be identified.  We appreciate any support you can give us. 

 

_______________________________________________________________

 

Update on Mr. Bean: 

 

In the hustle and bustle of things we have been keeping up with our little Bean.  He is doing quit well on his new medicine and his meltdowns have seemed to subside some.  His language is still developing and is trying to say more words.  We received part of his MRI update before the Christmas Break.  He has had only a very small measureable amount of change in the myelin increase in his brain.  There are still spots of undeveloped myelin in his brain, which is expected usually in children with intellectual disability. We are still waiting on the functional MRI results to tell us exactly what parts of the brain are developing normally or abnormally.  We are also participating in a research project through VIP connect.  They are studying several gene mutations linked to both developmental delay and autism.  All four of had our blood drawn and they will bank the blood and as science catches up they will test it for any identifiable markers.  His sister wasn't to thrilled with the needle stick, but she took it like a trooper.  Beckett seems to be a pro now and was ready and rearing to go. 

Beckett is a pro

 https://www.simonsvipconnect.org/

Pyper's dad is a goofball...she's a trooper

 

 

 

 

 

 

 

 

 

HEAR MY CRY!!!

Over the last few months I have been trying to find my place.  Asking myself questions of ,"Where do I start?  Who will listen?  Who really cares?"  I am learning that more people do care, but there is so much going on who has time to do much about another person's problems.  My steps have been small, but as I look back on two years of shouting to the sky, I feel like I have been heard.  I am so excited to announce that the group www.GlobalGenes.org has published my son's story.  I have been a volunteer advocate leader for them and trying to help raise awareness of rare diseases and rare genetic conditions. This to help inform the public to to pass legislation that will benefit the Rare Disease community and encourage them to contact our United States Congress.  If you would like to read the published story about my son, please follow the link.
http://globalgenes.org/mom-spreads-awareness-about-rare-syngap-1-gene-disorder-after-sons-diagnosis/

Please contact your US Representatives and ask that the pass the following legislation.

If you would like more information on the pieces of legislation being discussed please follow the links below:

House Bill 460:   http://beta.congress.gov/bill/113th-congress/house-bill/460/

House Bill 1591:  http://www.facebook.com/l.php?u=http%3A%2F%2Fbeta.congress.gov%2Fbill%2F113th-congress%2Fhouse-bill%2F1591%3Fq%3D%257B%2522search%2522%253A%255B%2522H.R.%2B1591%2B%2522%255D%257D&h=dAQEaOjeQ

In the meantime, Beckett has finished his Kindergarten year and is looking forward to a relaxing summer.  We are hoping that he begins his ABA school in July and looking forward to seeing his progress.  Since last summer we have seen vast improvements in his verbal communication and his cognitive level has improved. He is saying his siblings names so that you can understand them and is having a better time expressing his needs verbally.  He can following two word commands and understanding directions more so than he ever has.  We believe that since Beckett's seizures have been controlled his learning has increased at a more rapid rate.  I am super excited to see him grow and develop when he begins Spectrum of Hope. 

https://www.facebook.com/photo.php?v=10202000707371403&l=1997653894636273445

 

NEW FACEBOOK PAGE: Parents and Families of People with SYNGAP1

I have created a new Facebook Page to connect and educate families around the world with SYNGAP1.

This disorder is also known as MRD5, RASA1, RASA5, SYNGAP.

https://www.facebook.com/Syngap1?ref=hl

You are not alone!!!

 

Threshold Home Collection Exclusively at Target + Spend $50, Get Free Shipping on Select