The Need for Endurance

It's been quite some time since I have written my thoughts down. I have so much to say and not quite sure where to even start. The last three years of my life have been filled with trauma, heartache, disappointment, yet it has been the most surreal life I ever thought I would experience.

Three years ago I had quit my job of 23 years.  A career in teaching science to students ranging from 11-66 years of age. I taught college for 2 years, then high school for 7 years and on to middle school for 14 years.  I'm an expert in all science subjects from physics, chemistry, biology to geology and everything in between. I never knew that my experience teaching would ever lead to founding a nonprofit. I knew that the skill set I had I could lead it to help patients with SYNGAP1 find treatments.  I personally gave up a lot, my family gave up a lot. Not that being a teacher I had much to give up material wise, but it was everything I had to try and move forward what I thought was the right way. It has been the right way, the only way to lead to treatments. It is working and the model blueprint is one that many are following and wanting to replicate in the space in which I work. 

Leading an organization in a direction takes strategy. We must make sure that we were doing everything we can do on a shoe-string budget. This was a calling, this IS my calling! Many do not know that I gave up my retirement, salary, benefits and life savings to put into the job I love now to make it work. I paid for all my own trips and most of the overhead for the first 3 years of the organization until I was hired for one thousand dollars a month. Thing is, not many cared that I did that. 

That sacrifice has cost me much along the way. This includes time with my family, a decent wage, my marriage and I could name a few other things but the list would just go on. Yes, I chose to do this, as I was reminded repeatedly by those who said they stood by me to help. Only to realize they were only drilling holes in the boat you were rowing to try and make something work. Those didn't stay. They didn't believe, nor did they have the endurance to see it through. It is better that way. People who do not share the same vision become stumbling blocks.

I work very hard, just like the majority of the people who support our efforts for our community. I have a really hard time when those that had been with me since the beginning and who KNOW me have anything different to say. It is disappointing that a few do. It is true, you can't please everyone all of the time. You can only please some of the people some of the time. Standing back is the hard thing watching all the way through as people try to undermine the hard work you are doing. This work will still benefit them in the long run. I will never understand it. I was taught a long time ago that there are wolves in sheep's clothing. I never realized they could be in your own pack. However, it was encouraging that one of my colleagues I work with sent me what I needed to hear when I was at my lowest point.  

She sent a message and said to me, "Endurance is Mandatory"!  Therefore don't throw your boldness, which has a great reward. For you need endurance so that, having done the will of God, you may receive the promise.  Hebrews 10:35-36  

She reminded me that if God called me to this job, then those that fight against me is not really me they are fighting against.  They are fighting against God.  I have poured so much energy into doing what is right, and God has given me the endurance to continue. There are days I have sat in a corner or lying in bed in tears sobbing, asking the question why? Dealing with the sleepless nights and worrying about what to do next. The depression I have been fighting and the choice I made.  Asking myself when will it pay off?  When will we get treatments? Will my son benefit? Will the community be disappointed if I can't deliver? What if I can't keep hope alive?  The questions I have and the weight of the world on my shoulders are killing me. I had to keep believing. I have to keep believing. 

Not many know my personal story. Eventually, my story will be a book. If I could tell anyone anything, it would be to never lose hope, continue to persevere and NEVER put limits on yourself. My parents were told by my 3rd-grade counselors and teachers I would never read above a 3rd-grade level. Fast forward to 10th grade, the counselors told my parents to not send me to college. They went on to tell them I would never succeed and were setting me up for failure. They also said I would be an incredible hairdresser! That same year they determined I was dyslexic and had several other learning disabilities. My parents never told me this until I walked across the stage to be given my Bachelors of Science in Biology. I finished it in 3 1/2 years. I never failed or dropped a class. My heaviest load was 18 hours in a semester. I went back to get my Education Certification to continue on later teaching 16 years in the same school district in which my parents were told I wouldn’t make it in an academic setting. THEY WERE WRONG! The rest of the story will be detailed in my book...never put boundaries on a person's abilities. 

I fight depression every single day. I want things to be different.  I realized that the only way to make things different is to keep going. Pay no mind to those who come against you. Stay focused. Rest if you need, but get right back up and fight the good fight.  Don't let others who don't understand your vision keep you from seeing what has been put in your heart. 

Coming Out of the Dark

Most of us in life have been hit pretty hard in the gut at times.  I am no different. Sometimes things happen to make our perspectives change about people, their intentions, and motives. Life is one experience after another.  The last two years have been the best and worst of my almost 50 years on this planet.  I have dealt with egocentric, arrogant and self-serving people who wear masks to get what they want.  I have worked with people that are so insecure about their own existence and let their envy and jealousy of others take space up in their brains, which eventually leads to them being unhappy and unproductive, then turning on you to be your worst enemy.  These combinations of people are what make life extremely difficult to navigate, especially if you are a people pleaser like me. I allowed these type of people all of my life prevent me from being who I was suppose to be. I can now say within the last few months of my life, I now understand that your calling is way more important than pleasing those who really don't give a shit or are the "right fighters" in this world.  They would rather be right than work towards a common goal.

This has all played out during a tough time in my own personal life.  There have been days I would go so deep into the darkness that the words of those who critique your life, personality and your drive seriously wanted me to slit my own wrists.  All my life I have been searching for affirmation, the acceptance that what I was doing was "good".  It is daunting.  My childhood was not a good one mentally or emotionally, yet I had almost every material thing I could ask for. It led to who I am today. I struggled to please the ones who were supposed to love me the most. I knew they loved me the best they could only because of how they were taught.  I never measured up to the expectations of what they thought I was supposed to be. However, it made me into the fighter I am today.  The downside, it allowed me to have high expectations of others, and they couldn't meet them either, causing me stress and frustration. To top it all off,  I struggled through school having to deal with multiple learning disabilities.  I was called dumb, lazy, stupid and for lack of words felt like I was the most unworthy person who walked the planet. I was mocked sitting in the "special classes". Funny, people laugh when I tell them I couldn't even get a date in high school. I was expected to sit pretty and keep my mouth shut. 

After the last few months, years I hit rock bottom.  The lowest and most devastated I could ever feel.  My rock bottom almost caused me to lose the one thing I love the most, my family and my children, my life.  The dark depression I was experiencing made me escape into fantasy land and working overtime to avoid the emptiness I felt.  It was incredibly lonely at times.  God was nowhere to be found, the one thing I had always depended on to get me through.  I lost faith. I lost myself.  The one thing that woke me up was the calling I had to continue what I had started.  It is a still small voice that whispered.  "I am here! Look up at me and know that I am here".  I glimmer of light.  To be honest, the thoughts of ending the life I knew was real.  I woke up. I had forgotten God had a plan for my life regardless of those who come against you. The depression had consumed me to believe that I was no longer needed here. Yet it allowed me to see what is essential and most importantly WHO is critical and that I am important.  The other no longer matters. This is God's plan, His work and no person can destroy what He has planned.  I am just coming out of the dark, trying not to allow those who are good at sucking you back in affect me.  Baby steps.  Every day I must choose to keep going and focus on loving myself, which does not come naturally to me. It is a commitment mentally, just as I had committed to work out four times a week for the last 5 years to keep my physical body in shape.  It is now time to keep the mental and emotional self in shape. I now need to grow a thick skin. Sometimes it takes a swift kick in the gut to get you to come out of the dark to find the light again.

     

The Lighter Side

Funny, as I have just gone through another nervous breakdown and took about 2 days to only gain partial sanity back.  I was reflecting today about the things I have learned throughout this journey. I will share with you the things both good, bad and royal pet peeves that I have experienced throughout this journey.  First, I want to start by saying; the worst phrase any other person that has not gone through this before is, "That God doesn't give you what you can't handle"!  I CALL BS ALL OVER THAT!  That is the most absurd and ridiculous statement anyone could say to a parent of a child with special needs.

I mean seriously, you think He gave us this life to make us "handle it?"  Dear God People! Get your head out of your ass!  Any person that goes through a hard time has to either cope & deal with it or just go off into the deep end.  Seriously!
I mean really?  What am I gonna do?  Just be "happy and strap my ass in for the ride?" Come on?  No, we live just like anyone else.  We may have more breakdowns than most, but that doesn't mean we are stronger than the next guy out there.  As you can see, that is my biggest pet peeve.

I have learned more about life and people in it and their real motives behind why they do what they do.  It's quite sad in fact that you have people who are aiming for the same goal, yet sabotage the efforts you put forth because of their own self-serving attitudes.   Yes, those people will be in my book. Don't worry. I keep all the written documentation to prove otherwise. It's quite surprising what people actually put in a written word that they think will never see the light of day.  To them, I say; thanks for the new material!

But on to the lighter side.  I have learned many things in these last 10 years that I never once anticipated.

#1 Nervous breakdowns are regular occurrences. No way of getting around that, they just happen. I seriously should buy stock in Kleenex and wine.

#2 A therapist is an absolute necessity, no way getting around it because they understand more than your friends and/or spouse, plus they are sworn to confidentiality and can't go talk shit behind your back like some of the other people you realized really weren't your friends, to begin with.  Ummm?  Maybe I should have everyone sign an NDA and sign a "real friend" contract before disclosing any useful information that they could take and write a book for themselves. However,  I do have a few close friends who I trust with my life, but then I got dirt on them too.  ;)

#3 Marriage entirely is non-existent, and sex. Yes, we live together, but the lack of time building a relationship is put on the back burner due to the fact you are either getting over the nervous breakdown or just dealing with all the other needs in the family. Most of the time we walk by each other and say "hey, you get the mail today?"

#4 I learned there are more Cabernet and Blended Wines in the world I have not yet tried. HEB here in Texas has a selection that I could honestly spend hours in.. So, is it wrong that the grocery store manager knows you by your first name in a city of 8 million people? Ok. I am jesting people..kinda.

#5 I never ever need to go to school again.  I know more about the human brain than most Ph.D.'s.  Ok, well maybe not that much, but enough to get people to question if I am.  I just expect an honorary doctorate from somewhere before I die.  It's a bucket list item.  I learned you don't need letters behind your name to prove your worth.

#6 I need to get paid much more than I do for the things I do.  Yes, I said it.  Being a teacher for 23 years, it made me realize that we are worth more than they give.  That this is true for those, who lead nonprofits as well.  The old adage, you get what you pay for.  If you have all the volunteers, then they won't do a job like its a "real job." Well, not me, but others.  This is my calling. I did for nothing for over 3 years. Thing is others expect to work when they want to or not at all. You pay people, you will have better quality work and program outcomes. Part of it is understanding and having the right people backing you to get the mission done. Funny thing about that too is people just can up and walk away from the mission and their commitment, that's ok.  But for me to walk away, absolutely no way!!  Surprisingly to think a couple wanted me gone through this whole process. Funny, neither of those people did shit to help the cause either. Those backstories will go in the book as well. Wonder who would have stepped up and taken on the projects and programs and done the exact job I am doing now? Then never measure up to their own responsibilities. I have NO respect for you! That's when I learned people can kiss my ass!  By the way, next time you see me come to say "Hi"! Some may even say it's unprofessional to bring up. I call it being transparent.

#7 Your future is dismal if you have no support.  In my case, the family has just gone on with their own lives rarely calling to check in or even to come by to say hi.  Very disappointing!  So I learned to stop expecting things out of people because you won't be disappointed when they don't do what you want.  Consider it a gift when they do come around.  I learned I need to depend on myself. I continue to chug through, and on bad days you see it through every minute hoping that the next day will be better.

#8 Social media is a farce! No matter what.  Anything you post is going to offend someone.  Me to You.. Get over it!  I usually tell them to suck my big toe.  I will not change who I am for you or anyone else.  It also has become a necessary evil.  Great free advertising and a tool to drive depression that shows everyone in the world your life is excellent.  PLEASE!  Your life sucks behind the scenes just like everybody else..LOL! No one walks around with no problems.  EVERYBODY HAS PROBLEMS, especially us families raising kids with special needs. Keep scrolling if you don't like what you see. If you judge me based on what I post, then you aren't my real friend, and we don't need to be connected.

#9 There is NEVER enough money.  No matter how hard you work, there is always something.  But, there is still enough left for wine!

#10 Who said leaders had to act differently than the average joe?  We are people, we shop, we raise families, we have marriage problems, get divorced, separated, have financial issues. You name it we experience it.  Leaders aren't perfect.  But I learned that the world expects you to be "different" when you are facing the public. My dilemma,  I don't really care what the public thinks of me.  As long as I am doing the job I was hired to do and am performing at a rate that is not backward, then people can't say much.  Pick me apart... I bet I could find many skeletons in closets of those who are so ready to judge that would make your hair curl and skin crawl.  Being a leader doesn't mean you never fall or fail, it means getting back up to complete the tasks at hand the very best way you know how.

In closing, things always come home to roost.  Never underestimate a person that has a calling and doing their damndest to help those in need.  When you can match up efforts with the person whos kicking ass, then and only then do you have the right to criticize anything. Its then on you to do your best to carry the same load.  These are the truths I live.  If people have an issue with me being real, then that's your problem to bear.  Not mine. 

The Hard Part

I keep saying I am going to write a tell all book one day... Well, it may come sooner than later.  In my almost 50 years of living these last 2 years have been the hardest to cope with.  The excitement of working to try and change the lives of others has been incredibly daunting.  I thought that doing something you love would bring great joy all of the time.  Which by no means doesn't mean I don't still love what I do, it just means I have had to deal with more people, more personalities, more points of view. Now it's coming down to the hard job of separating my personal life from work and dealing with problems circulating around business.

The line between being a parent and a leader of an organization has to be drawn.  The emotion and distinction between the two can't be mixed.  You are either a leader or a friend.  When it comes to business I must take the parent hat off and look at decisions made objectively. Removing ALL emotion to do what is best to focus on a mission I set out to accomplish.   That means sacrificing even more to get the job done the right way.  I didn't understand what it meant when said "It's lonely at the top".  It is lonely at the top.  I have realized so many things about human nature and how success changes the people around you.

I think sometimes people forget I am also dealing with the challenges of caring for a child with special needs. Grieving the loss of a son I will never have and accepting the fact I have to let go of the hope that what I am doing may never help him.

I am devastated by the fact that I have people thinking I am doing is all for selfish gain and to control. I am a person who has a calling to go out and try to do the very best I can. Paving a path for others that come behind me to make a better life for their loved ones. The most important part, to know they are not alone.  They may not like the way I have chosen to create this path or even the direction to keep it going, but it will not stop me from continuing. I will go with those who choose to help. I don't put on shows and I don't expect anything extra but respect.

My son and family live without me being there much of the time because I chose to help find treatments for others. My family has sacrificed relationships, money and mental health issues for this cause. Of course I chose this, my question is why wouldn't have anyone chosen to do this for my son? Why did no one else in the world step up?  Then I am questioned about my motive.  I have wanted to quit and leave it all, but who would do it?

I keep going because the few who don't understand or try too are not my concern.  My mission is to help ALL those that walk into my path.  I do what I do, because if I stop I would regret living knowing I missed reaching the goal for another to have a better life.  MY SON IS WORTH ME NOT STOPPING!  It's been an emotional last 2 years with the struggle of severe depression, thoughts of suicide of loved ones, therapy, antidepressants, a broken marriage trying to recover, financial burdens and then trying to find yourself and just love and acceptance.

The last few posts have been dark. This is real! This is life! This is me trying to cope.  As long as I am alive I will not stop and I will not give up the fight to find hope and happiness.  I will plow through the mud and dark hours and one day I will reach the light I am working so hard to find.

Broken

Have ever been broken? Almost like someone has taken you and ripped you into two, not even just two parts but into shreds? Your heart, mind, body and your spirit just cut into pieces all at once.  I am broken, tired, worn out and struggling to keep a smile on my face. Smiling through the tears. That's what it feels like to live and deal with a rare disease every.single.day!  How does one cope? Get up every day and face the same thing?  No treatment, no cure, and sometimes the feeling of hope dies, and that is a feeling of being broken into many tiny pieces.

Then the question comes, who will help you put it all back together? I find myself many days sitting alone wondering if anyone cares?  You hear silence, thinking in the back of your mind that maybe someone has to care as much as you. Waiting for a knight in shining armor to rescue you from the despair that overcomes you. Someone to help and maybe depend on them to carry your torch if you can't.

Funny thing about admitting these feelings is people judge you and question your ability to keep going on.  Hasn't everyone been there? The impression that no one cares as much as you.  I'm struggling to send the message about my cause getting others to see the bigger picture. Why can't they see? It is infuriating.  I ask myself why I keep on going doing what I do. I want to quit.  I want to stop and be free and let go. Would anyone care?

I can't do this life alone. I don't want to feel alone doing it. I find myself sometimes being trapped in a vortex of emptiness and loneliness because I can't get others to see what I see.  No, I can't control others perspectives or make them believe in my mission.  So what do I do?  I cry. I pray. I ask why and then keep going.  I have too.  I have no other choice but to keep going.

My son and the patients like him, their families are depending on me to keep going.  But then I think about mine.  I feel guilty when I leave, but then I love to travel.  I feel sad I quit a secure job with benefits, retirement, health insurance, but I risk it all because I knew in my heart what I was doing was the right thing to do.  I've heard that it was my choice to quit and I should expect to live a life of less because of the career choice I made.  People, even a couple of family have said that I am in this for fame and popularity.  I don't understand how this can make someone think this way.  I am not about that nor can believe why others would think that as I sacrifice my time, my own money, my family to find a treatment. For I know in the future will benefit millions.

Please mark my words.  The discoveries that will come to light will not only help our own but many others related to them.  One day people will see what I see.  One day people will be there to help. One day I will find the hope I have been searching for so hard and long for. One day we will have a treatment.

One day I will be free and no longer broken.

It's a Marathon, Pace Yourself

I am sitting here next to my little Bean thinking that this is a race that never will end. I realize that he has so much to offer and he has taught me so much about life.  But on the other hand, I feel so guilty that he has these problems. He never ask for them, let alone deserved any of it. I get frustrated having to deal with the changes that happen everyday. It is like living a continuous state of post traumatic distress.  He is so cute and adorable when he is just happy and having fun, but when you tell him "no" all hell breaks loose and he turns into a different child.  The art of distraction is the key to curbing these horrendous meltdowns. My problem is trying to find different things to take his mind off what he is upset about.  The emotional and physical toll is taxing on your body, mind and soul. I have to reach deep into myself and find the strength to deal with this life I have been given. The good Lord above is my only strength.  I don't know how anyone does life with out relying on faith. That is my only hope.  Some days are wonderful and some days are absolutely pure hell.  His behavior over the last couple of  months has been erratic and we have started a new seizure medicine called Lamotrigine. It is suppose to help control the seizures and help curb the behavior. We have to watch for a rash that can be lethal and it will take a couple months to get him titrated up on the higher dose to see a full result of its effectiveness.  I have been told by several people that when children like him are growing, their brains are changing and that is when the behaviors are much more prevalent. So living day to day is the key.  Honestly, the older I get, the more fear I have that I will not be strong enough or have the energy to deal with his behavior.  I am already so tired and have no idea what it will be like in 10 years.  I will be 55 then and can't even imagine those days.  I already have very little help from my family or my husbands family.  To be honest, I am wondering when my husband and I will ever be able to spend a night away from home just to be together for any type special occasion? We haven't been over night anywhere in 5 years.  I think the last time we went anywhere overnight alone was when the twins were about 10 months old.  Of course that was before we knew exactly what he had and was not to hard to cope with at the time.  What will probably end up happening is I will have to pay someone tons of money to do it and then worry the entire time that my Bean will not be cared for like he should.  So I just sit and imagine myself going to Hawaii sitting on a beach with my husband and hoping when I get to Heaven that it is much better than Hawaii could ever be.  I do have hope that things will get better as soon as we can figure out the proper medicine for him.  It just seems to take forever.  I haven't given up hope on miracles either. I believe in miracles.  I believe that there is a purpose of why all of this is happening.  I just need a break sometimes.

Beckett and his twin Pyper at the Houston Zoo Lights 2014

My husband told me something the other day that I have thought about ever since.  I was complaining to him my discontent and frustration about how everything just seems to get harder and never seems to end.  He told me "Monica, this is a marathon, pace yourself!"  I was kind of taken back, but I stopped and thought about it. He was right. I need to just keep on keeping on, but deal with things that come up and not worry about the things that are out of my control.  He reminded that worry is just borrowing trouble.  Things will be the way they are going to be.  I will keep running, pacing myself.  I am determined to finish this race.  I might not win any trophies, but I will know I never gave up and if I have to drag myself across the finish line, I will.

1 Corinthians 9:24 Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win.

Feeling Joy In Life Again!

It's been a while since I have posted an update.  I have done some soul searching that past few months and have realized that I had let my circumstance's in my life take control of my joy and happiness. I realize that through Christ, I really can't lose my joy, but I can be sad and unhappy when troubles  come up; which is ok. I just can't let it paralyze me.  I am going through the stages of grief learning to accept the life my child and family has been given.  I have come along way from the sadness in the last few months. God has shown me that He gave Chris and I this child because He trusts us to take care of him and raise him in the light of Christ and will use him for His glory. God has given me promises through the Bible that I stand on to keep me strong during the hard days.

Romans 8:27-29
²⁷ And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
²⁸ And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose. ²⁹ For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters.

Ephesians 1:11
In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will,

I have to remind myself everyday that God is in control and that no matter what happens there will always be a purpose that God has a plan for.  I have decided to get involved with a couple of organizations that I can give of my time and also encourage others with a message of hope.  This helps me to give of myself and help others in times of trouble.  You just never know when God will open a door that He will allow us to walk through.  It really does make you feel better to know you are helping others.  It helps too minimize the magnitude of your own problems. 

I have also learned that when you let negative consume you, the good sometimes is over looked.  Beckett  has been a huge blessing to our family. His smile and laugh are contagious and when he laughs, you laugh with him.  I often look at him and wonder what I would have done without him.  He is becoming more receptive everyday and learning to do simple tasks.  He is beginning to imitate behaviors I never thought he would.  He watches me do chores around the house and follows me to do the same.  He helps load the washer & dryer and even tries to help put dishes away.  He wants to help sweep, rake the yard, pull the weeds..(well, sometimes my flowers), help his daddy push the lawnmower, bag grass and even help sand his play house for it to be re-painted. 

His speech is getting better also.  On Easter Sunday a week ago, Beckett said his big brothers name for the very first time..."Taylor"...not so much with the "T" sound, but it was pretty darn close.  We were so excited!! He sings to the radio in the car, and just loves Bruno Mars! 

I know that there are going to be tough days ahead and that I still have to take it day by day.  But the only way I can make it is through the Grace of God!  Otherwise, I don't know how I would get through it.  I really don't consider myself a "preachy" type person, but I am being real about my thoughts and feelings.  I do also want to note that I am so far from perfect and am human like anyone else.  I just want to share with the world what God has done for me and my family. 

Easter Sunday 2013

Next Step...I Mean Jump!

It's been a busy last few weeks and looks like the next few will be even busier. It's Rodeo Season for my husband and I.  We volunteer at the Houston Livestock Show and Rodeo to give back to the community here in our city.  It is a lot of work, but it is an escape from our everyday routine. The kids also really enjoy the dressing up and seeing all of the farm animals and fun things they have for them.

The video is sides ways..opppsy!

 

Even in the midst of all the everyday life bustle, we are still chugging along.  We are excited to watch Beckett  making new strides.  We are learning to deal with his temper tantrums by both ignoring them and by placing him in our dimly lit room on the bed, while he cries out the fact he can't have what he wants.  We have been pretty consistent with it and it seems that they have gone from 2 -3 hours down to about 15 - 30 minutes.  His receptive communication seems to be getting better.  His new words are "hot" and "cooooollllddd"...He tends to drag out the vowel sounds in his words.  His vocabulary both verbal and signs have made huge gains since the beginning of school this last fall.  I am also noticing that he is beginning to play a bit more independent with toys, especially trucks. We have watched him looking at the wheels roll back and forth when he plays with his cars.  Since Christmas Beckett has loved his new trampoline.  He has actually learned how to jump really high.  It has really improved his coordination.  I do have to admit, it took him a while to actually climb into it.  We had to force him in and once he realized it was going to be ok, he loved it.  I have already thrown my back out twice jumping in it with him. He laughs so hard he sometimes can't stand in it. His laughs are contagious.  When I watch him I forget that he even has any problems and is just like any other

kid having fun. 

Rock Bottom & Climbing

As I look back during this last year from when I started this blog, I have to say that this last week has been the absolute worst in my life.  I have been fighting back emotions in several areas of my life over the past 6 months.  I will not lie about feeling so low that I really felt like not going on in this world.  As I said in early posts that I had an outside influence that was affecting our family. This unfortunately happens to be my ex husband.  He hates me, my husband and our success so much that he would do anything to hurt us. 

My youngest son I allowed to go live him because I decided to go to mediation instead of going through a arduous court battle, AGAIN! He has taken us to court before and lied about many things and caused us to waste close to $25,000 that was reserved for my older children's college education.  He has successfully turned my 15 year old son against us.  I believe my son being the youngest, has felt like I have forgotten about him while trying to raise my twins.  As most people realize, raising a special needs child does consume an enormous amount of time and money.  Therefore resulting in changes of the dynamic of how things are done within the family.
The frustration level that I feel is almost indescribable and unbearable.  I am very sad that my 15 year old and my 20 year old are having to deal with anger and bitterness that is directed at both myself and their father. My 18 year old keeps things to himself and doesn't like talking about his feelings.  Which also worries me.  I never wanted it to be that way and have no idea how to fix it.  I wish they would have had a happy childhood, but unfortunately they have had to pay the price for adults who can't act like adults.  I have to admit, that I haven't been the best parent, but I have tried my best. I feel I have failed as a parent and in those regards has been hard to accept. 
Trying to juggle not only my other children I have had to juggle my marriage.  You would think that we would get time together because we work together at the same job.  We don't have much alone time or time to focus on our relationship as a couple.  When you don't spend time together building you then tend to fall apart.  The stress of having a special needs child on a marriage was more than I expected.  I believed I was going to lose everything this week and didn't want to live to see what it would be like losing everything again.  I found myself laying face down on the floor crying in my room begging God to just take me away.  I even feel guilty saying it, let alone thinking it.  I heard a very small voice whisper in my ear, "I will carry you through".  I stopped crying and I prayed for the strength to carry on.  It gave me the peace that the future was going to be ok.  I think I had hit "rock bottom" this week and only the Lord above is able to carry me out of the rocks.  I still fight the sadness, but I try to remember the God is in control and He has a plan.  But I honestly have to say...I really don't know what that is.

Mystro Please!!

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Well, I know it has been a while since I have had a chance to update my blog.  A lot has been happening in my personal life that has interfered with our normal routine.  I am now in a custody dispute with my ex husband over my 2 teenage boys.  It has been a challenge to try and keep on track with Beckett and deal with unplanned events that are happening around us.  Never the less, I must press on and give God the fight over to Him.  I have learned through the last couple of months to truly know what it means to be thankful in my circumstances.  I am allowed to have justified anger, but to know that God will see me through this and that He has a plan, which I learned AGAIN, that it is not always my plans he has for me. ;)  Keeping a smile on my face has been hard, but for the most part I am at peace and I know the truth will be shown for those involved.

Over the past couple of months Beckett has started school again and is now adjusting to a new routine.  He doesn't get a nap this year in the afternoon.  We are feeling the effects of this every evening when we get him home.  He tends to scream and kick until I can get him fed dinner.  We have been giving him a bath right after he eats.  He has been going to bed around 7 every night and sleeps until 6 in the morning.  I am hoping that he adjusts to his new routine soon. 

Besides the new routine adjustment, we have just gotten his new device called the Dynovox Mystro.  This full operational computer is going to be his link to communicating with the world.  I was so happy when we found out that our insurance company paid the full $9,000 for it.  This was an answered prayer that God could only do!!  I am blown away by all the things that he can do with it.  Beckett is catching on slowly, but I am sure that over time he will be able to communicate is basic needs in a few months.  He carries it with him everywhere. It even has his favorite restaurants programed in it with his favorite foods.  His frustration level will be incredibly lowered using this to tell people his needs. 

Beckett telling me he has a "Book"

 

In the meantime, we are still waiting for the results of our 3rd round of genetic testing to return.  We also got an answered prayer that the insurance company paid in full for the $15,000 test.  YES! That is correct..$15,000!! We thought we would be responsible for at least part of it at some point and were amazed again how God works when we just don't think He is going to have it in His plan.  GOD IS SOOOOO GOOD!

Faith of a Mustard Seed

We have taken some time to be able to process some if the news about Beckett.  Our family has decided to go out on faith and trust God for the strength and funds to help take care of our little boy. I have been frustrated with the system put in place to help children and adults with special needs.  I am disappointed in the lack of funding that our nation has for these very needy individuals.  It is sad to see working people who want the best for their children struggle for every dime to get the needed care for their family members.  It seems that the richest nation on Earth can't find the necessary money to help people with minimal care. We are not talking the best of care, but the absolute bare minimum.
The decade of waiting is outrageous. The delay in critical developmental time is caustic for the brain to be able to make the best progress.  Without this time the chance for growth is slowed or lost. The burden is put on the public school system and it is already strained to its capacity. The average person who is working are punished for working. The ones who are well and able to work and don't, get the most from our financially stressed system.
My husband and I have gone out on a limb to try and get our son the care he needs.  Having to put our pride aside and ask people we know and even people we don't to help us get care for Beckett has been a humbling experience. We have set up a donation website to help raise funds to provide for his needed therapies, which include Occupational and Speech Therapy (recommended two times a week but he goes once) and the recommended Physical Therapy that we haven't started yet because we can't afford all the co-pays.  He also needs a special computer that will help him communicate and his SMO braces for his feet every 6 months.  We know that God will provide his needs and Beckett will be used for Gods Glory no matter the turn out.  I won't hide the fact that it is very hard for us to keep the faith, but we try to take it day by day.  We stand on the promise God made that He can move mountains with the faith of a mustard seed. (Matthew 17:20)  Some days I think that is all I have, but He still brings me through.

http://www.giveforward.com/beckettsstorymyswan

Our New Normal

Our New Normal

After a year of no "real" sleep and dealing with new situations that arise every day, life wasn't just day by day, it was minute by minute.  Often dealing with the frustration of a child who is unable to communicate is just pure hell.  The constant screaming shatters any semblance of calm.  Frequent breaks to step away for relief are necessary to maintain a sense of mental tranquility.

I kept asking why He allowed this to happen to my little boy.  I was angry at God.  It is a horrible cycle of frustration, anger, guilt, and depression.  Fortunately, I didn’t have the luxury of feeling bad for long because auto pilot would kick in and remind me that I had to determine to get through this and only God could help me do it.  I'm not just saying that because it sounds noble or because it is the "Christian" thing to say.  I truly believe it.  It's just the human side of me forgets sometimes…ok...maybe a lot of the time.  And then I come to my senses, and there He is just waiting for me to depend on His strength. 

I never knew how much patience is needed to raise a special needs child.  My mother used to say, "Don't pray for patience, pray for understanding."  So I did.  I was praying, asking God to help me understand what it was I needed to do to get through this.  Looking back on Beckett's first year was an eye opener…I had learned many small invaluable lessons of life.  The small things you do are really stepping stones to a livable and purposeful life.  To this day I struggle with my purpose.  I'm a proud mom of 5, a wife and a teacher, and still it seems that life throws things at you that you never expected.  In a flash, you can lose the focus of your responsibility to a child who utterly dependent on you.

My purpose changes daily.  To keep up with my child’s ever evolving needs, I am learning sign language, impersonating physical and occupational therapists, and as a result I am far more in tune with the everyday challenges of special needs people.  My compassion and empathy is foremost as I observe those who cannot do for themselves the most menial task.

I tend to come back to a statement that was told to me by a very wise seasoned educator I work for.  As I described some of my daily struggles, she said "Monica, God gives us a new normal on occasion, we must trust Him to get us through it and find ways to modify."  She was right, I keep changing and adjusting to my "New Normal."  Thinking like that helps me get through the hard times and knowing that it's only temporary helps because the next "New Normal" is just around the corner.  Beckett himself has a new normal every day.  Every milestone he makes is his new normal.  We are all on this road together but his path is bumpier than mine.

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small motor skills improvements. He began using a walker that helps lower body muscles develop. His therapist, an ex-marine, with a demeanor and motivation techniques that do wonders.  He is a stubborn, bull headed little boy and a bit spoiled.   Sometimes I thought she was too tough, but I understand that higher standards are necessary for him to aim towards.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand-over-hand demonstrate just what he can do on his own.   

With concerns about motor development came concerns about cognitive development.  He had an occupational therapist and a play therapist who worked with him weekly.  They taught him to hold a cup, turn pages of a book, and to use a crayon and other simple motor tasks. A normal toddler typically imitates behavior by watching someone with a toy.  Beckett was not interested in toys or even in watching cartoons on television.  Most of the time he wandered aimlessly around.  It seemed like he was in his own world, indifferent to the physical world he actually inhabited.   He was on a different level than typical children. At least that is what my "gut" was telling me. 

Before long we became concerned about his ability to learn.  Processing a simple task took him a long time.  Not just minutes, but sometimes days of repetition.  To serve as an echo chamber, I would repeat the same word a hundred times a day.  As a result, I think I dreamed about "more" and "juice" and "milk" for months after.  Frustrated and discouraged I often wanted to quit.  But God knew what He was doing because just when I wanted to give up, relief came when Beckett would make a sign or say a sound that was close to the word of the moment.  With effort, after his first two years Beckett had retained about 5 words he signed or sounded.

This required another avenue of cognitive investigation and so began online research and contact with cognitive specialists.  But no one had definite answers.   I struggled with the idea of him not ever being a productive independent person in society.  Who would take care of him if something should happen to my husband or me.  Would he be dependent on my older children?  Would my extended family be able to provide the time and therapy he needed?   I had to let go of those thoughts and believe that God had a plan to take care of him and that I would be included in that plan.  With worries like these, depression was a constant visitor.  But thankfully sadness was short-lived because my brilliant boy would do something unexpectedly encouraging, which would signal a return to hope and promise.  It was going to be ok.

Never will I forget an afternoon that gave much-needed hope and renewed faith that God listens to prayers.  One afternoon, off I went to pick up the twins from daycare, and there was Beckett sitting looking outside the glass door that led to the playground.  He turned and saw me walk in and smiled…a big smile.  He pulled up on the door handle and took a step.  First one step, then another and then another as he kept walking all the way across the room to me.  I dropped to my knees, crying.  I grabbed and hugged him so close.  To see my little boy walking was extraordinary.  His teacher, Ms. Claudia, also wept.  Her sainted efforts were also a part of the many people helping him.  The news and excitement spread throughout the building and all his former teachers came to see The Magnificent Walking Boy.  He was progressing!   After months of prayers God had heeded the call.  Beckett was walking at 22 months, exactly two months before his 2nd birthday.  It was a moment of pure joy that will forever live in my heart.   

These glorious moments – precious few and far between – keep me going when I feel the pull of despair.

The year Beckett turned two was the most stressful since we learned of his handicapped milestones. 

Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor expedited an appointment for us.  Instead of the six- to nine-month wait we were seen within three months.  In the meantime, we kept chugging along, going to therapy and working with him at home.  He was making very little progress and it seemed that new skills were coming at a snail’s pace.   At times I cried myself to sleep.  Some nights I would get barely 3 or 4 hours of sleep and then work the next day running on fumes. The emotional toll was also showing at home and at work.  I needed answers!  I was growing impatient with a simple answer to our question that never came.  When will a doctor tell us what to expect in Beckett’s future.   

At long last we got an appointment to see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling soon faded into worry and more anxiety.  I showed up with my husband, Beckett and Pyper, his twin in tow.  We waited in an exam room with two chairs, a patient table, and a computer.  You try keeping fussy 2-year-old twins occupied for 30 minutes in a sterile examination room…I dare you.  FINALLY a knock at the door and a woman peeks in and introduces herself as the Physician's Assistant. I was glad we were tended to, but disappointed it wasn't the Main Man neurologist.

I should be grateful but the frustration of unanswered questions had gotten to me.  After the introductions she was taking detailed notes and making close observations of Beckett while he was itching to get out of there.  The anxiety level rose as she recommended genetic testing and an MRI under sedation.  Several genetic tests, I knew, were for rare disorders that could cause a child to have fatal consequences or that would require round-the-clock care for the rest of a child’s life.  These tests were suggested merely to rule them out.  Because some of his symptoms were associated with these disorders the question of affliction lingered, and we needed to know one way or another.  The genetic test I feared most was Rhett’s test.  This is a fatal genetic disorder that, however mild, can reduce a victim’s life to 10 years.  The other tests scheduled were for Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  Aside from a dreaded positive result, my husband and I cringed at the thought of how much these tests were going to run and the very real prospect that the insurance company would deny claims. 

We waited almost 3 torturous months for the genetic results to come back.  During this time I spent untold hours researching genetic disorders.  I was looking for answers that never seemed to come.  I would cry at school and cry at home praying for the tests to be normal.  Meantime, we were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After 3 attempts to get him an appointment at Texas Children's for an MRI, we succeeded.  But I hated that day too.  He had to be put under anesthesia for a conclusive view of his brain.  I myself almost passed out when they gave him the drugs that put him under.  My husband was holding him while they administered the drugs.  He fell limp, which was painful to watch.  It was a successful scan and the results would be ready in 3 days.  Again, 3 very long days. 

That day finally came, the moment of truth!  We had the results of both the genetic testing and the MRI.  The PA called and said all the genetic tests were all NORMAL!  I felt my chest sigh in relief.   The neurologist looked over Beckett’s records and related some of the best news I’d had in a long time.  He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%.  A typical 24-month-old has approximately 90%.  Myelin is the plastic covering that insulates an electrical impulse wire. This disorder makes it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting.  Hope then returned when the doctor said that with extensive therapy and lots of patience, there is an 85% chance that Beckett would be fully functional by the age of 6 or 7.   This mother dreams of that hopeful prognosis every day.  This is a potential result I won’t forget and I pray that this time – this time – the doctor is right. 

We will see, because there are changes every day, good and bad, but for now we choose to hold the most positive light before us.

My Biggest Question....Why?

Dealing with the emotional shock of finding out that our beautiful blond haired, blued eyed, smiley faced little boy had so many problems facing him was devastating to us.  The questions of course began to race through my head of why this was happening to our family.  I would look back at the things I could have done for this to happen. I wondered what I had done wrong.  Did I not eat right, pray hard enough, read my Bible enough, not be the best person I could be? It was like a broken record playing in my head over and over.  The frustration of the unknown lingered and never seemed to subside.  I ask God many times "why" and the answer never came.  I had to teach myself everyday to let go and do the best with what I had to give my boy, while at the same time providing support and attention to my other 4 children.  It seemed like a whirlwind had taken over my life. I was out of control of my own life and I didn't know what to do.

Reprieve came when we received help from the ECI program for Beckett when he turned 8 months old. They provided physical therapy, occupational therapy, and play therapy for him two times a week at daycare. This helped us financially by qualifying us to be on their sliding scale to pay for his monthly therapy.  It also kept my husband and I from taking off work and bring him to another location for therapy.   Before Beckett began therapy we wasn't crawling, turning over well, he could not feed himself finger foods or hold a sippy cup.  He also did not babble like normal.  He did however have a scream that would set off our broken glass alarm.  My husband playfully said he was an "X-Man" and had "X-Man Powers".  That piercing scream would make the hair on the back of your neck stand up.  On the flip side to that he has a contagious laugh.  When he laughed, everyone laughed with him.

His therapy began to help is motor skills and coordination develop by the time he was 12 months he began to scoot on his rear end and was attempting to try and crawl.  We learned through the therapist that every motion he made had to be taught to him.  Hand over hand was key to his success in developing his motor skills & coordination.  On his one year well check we received a recommendation from his pediatrician to have Beckett be seen by an ENT for the continuous ear infections he had since he was 3 weeks old. He also had a concern about his hearing, since he was not talking yet.  He had a numerous hearing tests done, which thankfully were all normal. He and his twin sister both had ear tube surgery the same morning. This seemed to reduce the number of times he was sick. 

Beckett first pair of SFO's before be began walking

A few weeks after ear tubes were put in we found out from his physical therapist his feet are pronated and turn in. He has no arches, he has "flat feet".  This causes problem causes him to lack balance. She recommended him to get SFO's.  These types of braces came right below the knee and were custom fitted by casting.  Keeping a busy boy still for that was a three man job, one to hold his arms, one to hold his legs and the other to cast them. He wears these braces all day except when he his sleeping.  We also found that this was just the beginning of the many appliances and prosthetics he would have to wear. Another finanical hit to us.  These braces run about $2500/pair that must be replaced every 6-8 months, depending on how fast the feet grow.  Needless to say, my husband and I were saying...How much more can we take?...Looking back from now...so much more than we expected.