As Life Changes

Many things in my life have changed since quitting my job teaching of 23 years.  I really don't know how to explain what I am going through.  Anxiety, Direction, Searching, Security....  You want to scream to the world what is going on inside you, but you just can't get it out.  Only some of the closest few to you know the "inside" scoop of what you really are dealing with.  I laugh when I hear people say "The struggle is real!" because in your heart of hearts, you know it really is.  There are so many dynamics taking place around us and to use words to describe them is well....impossible.  You can't really explain your place to someone because they aren't there, they can only imagine. A state that is giving a sense of loneliness to the whole world you live in.  Even when you have thousands of people around you that are reaching out everyday.

I am pretty sure if someone were to film a documentary on my life.. it definitely wouldn't be a movie.. more like a series.  What many don't know is I have come along way in this life. Unfortunately, I still make mistakes and I do learn from them..hopefully faster now than before.

Going through my childhood, youth, young adulthood and now middle age I have been through some shit. Most likely everyone would be very surprised for those who really don't  know me.  I keep a pretty BIG smile on my face at times to cover up some of the true feelings I have.  I usually don't take much off people now, but somehow I still give my heart to people and things without even blinking an eye.  I guess that's me though. I have also taught my children the same thing, give your all until someone tries to steal it from you. Then protect it with all your might.  I am sad when people can't see your true worth and value in what you have to offer.  But I honestly have to say, that will never stop me from the goals or ambition I have to really change the world.

It's funny how life shapes you to be the person that you are.  I guess the process will continue throughout life until we take our last breath.  One thing I do want people to know, is that I never did the things I do for myself.  I really always have had others in mind and how I can help them.  I never was selfish in my actions. I don't care about money, fame, the cars people drive, the designer clothes people wear, the houses people live in or friends they have.  I want people to know it was how I helped those less fortunate and gave every last bit of energy to fight for those who couldn't themselves. That's what I hope people remember.

I had a little bit of an epiphone today and realized again for myself.. "no one can love you more than you loving yourself and one can not give love if there is no love of self. "  So.. Love yourself! Then everything else falls into place where it should.

Flashback Beckett's Story

I know many special needs parents and caregivers can relate to this story.  It's been 4 years since I really sat down and thought about our journey; where we were and where we are now.  I just want to recap the beginning again for those who came in after the movie started ;)

Beckett's Story:

In November of 2012 we found out that my son Beckett has been diagnosed with a very rare autosomal dominant disorder called SYNGAP-1 gene (6p21.3). I didn’t know whether to cry or breathe a sigh of relief. He was the first to be diagnosed at Texas Children’s Hospital Genetics Clinic. Symptoms of this disorder vary in severity and include mild to severe intellectual disability, speech delay, a spectrum of epilepsies and has been linked to autism. Our son Beckett has been in multiple therapies that include OT, PT, speech therapy, play therapy and music therapy.

I knew that something was not right when Beckett was 4 months old. He was not sitting up or meeting the same milestones as his twin sister. I began my search for an answer beginning with my general practitioner, then adding 19 more specialists to the list since his birth. After many tests such as an MRI, EEG, Cat-scan, Microarray and metabolic tests at 2 years old we found out everything was “normal.” But we knew that it was everything but “normal.”

He was unable to walk, feed himself, babble or talk. We waited 14 months to get an appointment to have an evaluation at Texas Children’s Meyer Center for Autism. They concluded that our son was going to have intellectual disability and a severe speech delay, but still no real answers. The Meyer Center then referred us to Texas Children’s Genetics Clinic for Whole Exome DNA testing.  After a grueling thirteen week wait for the results, we finally got the answer to his problems. It took almost 4 years to get a diagnosis for our son.

I was in shock and knew that it would be an uphill battle.  Our genetics doctor only found one published paper on SYNGAP1.  I knew that there had to be more, but sadly there wasn't.  On the drive home from the clinic I cried and prayed for answers to why.  Thoughts of despair and helplessness overcame me.  It took me about 2 days to process the news, but I was determined this was not going to break me. I had no idea the challenges I would be facing taking care of a special needs child while raising four other typical children who needed my attention and a marriage that I was unsure would survive and that is an ongoing struggle to keep a balance.

After a past of abuse in my own personal life before I was married the second time, I was not going to allow myself to be a victim any longer to anything.  I gathered my thoughts and decided then that I would do everything in my power to help him. Finding answers for him and others was my purpose. I began to blog about his progress and wanted to try and raise awareness of SYNGAP1 and find others like him. 
When I posted our diagnosis on my son’s blog I began to reach people from all over the world who were like me.  I created an information page through Facebook that is strictly for research on SYNGAP1 and brain based research that is related to SYNGAP1. The first parent who found me helped me set up a closed Facebook group for parents looking for support and a place to talk about our children’s medical progress and challenges.

As the Whole Exome DNA test becomes more common we see our group growing worldwide. The network we have created in this group has brought several international doctors together to work on research to define our rare disease. We continue to drive research to help find a treatment that will help our children. We have since created a nonprofit for education and research for SYNGAP1. Our group has doubled in the last year.  We currently add newly identified patients worldwide on an average of one per week.  Though this journey over the last four years has been difficult, we have had triumphs and trials. I wouldn’t change for the world. I have learned more about myself and the love I have for people than I ever thought I would if I had not been placed in this situation. I am very grateful and appreciate life more than I ever have and am truely happy doing a job I love.  I will not stop, I will not give up.  #NEVERSTOPPING

My Special Boy: I Can Change The World!

My Special Boy: I Can Change The World!: It's been quite a while since I have posted an update on Beckett. Since the start of the new year we have been full speed ahead.  Becke...

I Can Change The World!

It's been quite a while since I have posted an update on Beckett. Since the start of the new year we have been full speed ahead.  Beckett has started a new medication which in addition to his Lamictal has helped him control his meltdowns and sensory overload.  He has been on Clonodine for the last 6 months.  It has been a life changer for us.  His meltdowns are minimal and his cognition has improved over time.  We still have the occasional tantrum, which is expected.  But this is nothing like from years before.  The hours of screaming are gone and it is much easier to redirect his behavior.  He is now at a daycare where the children and workers love on him.  I see him truly happy and there has not been an issue with him at his new after school care.  The foundation is taking off.  We are full speed ahead and are focusing on building our programs and planning a long lasting strategy that will sustain our mission.  My new motto has become #NEVERSTOPPING.. because until I am 6 feet under I am never stopping.  My hope grows stronger for these children every day.  The great scientists and clinicians who are walking by our side all the way are going to help us get there.  There is so much to say and do.. but to keep this short there is one picture that says a thousand words.  A picture that my Beckett brought home form school said it all.......

He has changed my world.......