This Momma's a Mess of Mixed Emotions PART TWO

(Please read previous post first, as this is actually a continuation of that)

So the new tic is called COPROLALIA...which is the involuntary swearing or uncontrollable utterance of obscene words or socially inappropriate and derogatory remarks.

I cannot even begin to put into words how devastating this is! 

WHY do these kids who already endure enough, and already get made fun of for their other tics whether it be blinking their eyes rapidly, or jumping, or screaming, or coughing, these kids who are already labelled DIFFERENT.. Why do they have to develop THIS tic???? 

 It got me thinking.. Wondering.. Why is this tic so devastating to me?? I mean we've experienced lots of tics over the years.. And Allyssa has some very difficult obsessive Intrusive thoughts she has to cope with, that are very unsettling to say the least.. But even with those, there wasn't this complete feeling of devastation that I'm feeling now!!!  And that's when it came to me.. No one can see or hear Allyssa's obsessive intrusive thoughts, and although it breaks my heart that she struggles with these negative, unwanted harmful thoughts, we deal with them together in private, no one watching, judging, making fun or yelling at her to Stop It!  (I will write more on intrusive thoughts in another post another day.. Because I feel it's important for people to know what goes on in the minds of these kids on a daily basis) 

So once again it's the ignorance of people about these conditions that makes it more devastating for those suffering than the tics themselves are!  People are going to judge my daughter when they hear her cussing, people are going to judge her Dad and I when they see us do nothing and completely ignore her cussing, people are going to judge my 3 yr old when she repeats what she has heard her sister tic, and again people are going to judge me and my husband as the parent's of that three year old !! How's Allyssa's friends parents going to feel about Allyssa playing or hanging out with their child now? She already has a limited number of "friends" anyway because of the belief that different isn't Cool!  How are we suppose to go to church and Allyssa to youth on Sunday and Wednesday nights?  My daughter shouldn't be punished for something she cannot help, and she should be able to continue worshipping Her Savior in fellowship with her Christian peers... But what will others think? What would I have thought if I hadn't lived the life I've lived and been blessed with Allyssa in my life? What's the right answer? 

Now I'm not saying that others are the only reason this particular tic is devastating.. Imagine how Allyssa would feel, standing in the house of The Lord, worshipping Him with all her heart and out of nowhere hollering out "fuck.. Son of a bitch!"   HEARTBREAKING!!!! That's all I can say! God Bless this beautiful child of yours.. Of Mine!!  We NEED your help, your guidance, your comfort God and we need others to be understanding and compassionate!!  

All words have left me.. My emotions have taken over.. So time to go for now.. God is in Control, His Plan is Perfect!! I Do Believe!!! Just help us through this God!!! Amen!

This Momma's a Mess of Mixed Emotions

Found this on Facebook:

WHENEVER YOU DO NOT UNDERSTAND WHAT'S HAPPENING IN YOUR LIFE, JUST CLOSE YOUR EYES, TAKE A DEEP BREATH AND SAY.... "GOD, I KNOW IT IS YOUR PLAN. JUST HELP ME THROUGH IT.........."

Well God, I just don't understand ...WHY.. ????? On so many things in my life right now!    I believe in YOU.. And know YOUR ways are so much better than my own.. But my heart is heavy, Lord... no really it is so much more than heavy..... It's breaking...Lord... I'm hurting and confused... I need Your help God, now more than ever, to guide me, to comfort Allyssa, my family, and me, To give understanding and compassion to those whose paths we cross, Lord ... to get us through!!! Amen!

Relying on God to see us through is nothing new for us... We've been on this unpredictable journey with Tourette's, OCD and Anxiety officially for 6 years but in reality it's been 10 years!!  Wow... All that Allyssa has accomplished through the years and the AMAZING young lady she is growing to be.. My heart swells and completely overflows with PRIDE and LOVE and JOY and ADMIRATION ... So how is it that at the same time my heart breaks with GUILT ( I'm her Momma, I should be able to fix this for her and take away her hurt, I shouldn't get so frustrated when I know she can't help being the way she is being or demanding so much of my time and energy) and HATE ( I know hate is a strong word but a lot of times I hate what these conditions do to my daughter, that she cannot help being "difficult" at times, that things that are considered fun to most are so extremely stressful to my daughter and not fun at all, hate that there are no answers here on this earth just do the best we can to get through our days, hate that people really are ignorant to what these conditions are and how they affect the individual that have them and their families).... and SADNESS 

And AVERSION ( plain wanting to avoid the whole entire T.S. OCD and ANXIETY)

These are just a few of the conflicting emotions I feel simultaneously throughout  each and every day.. And if I ,just as Allyssa's mother, am feeling like this... I cannot even begin to imagine what my daughter, Allyssa, feels day after day after day being the one actually "living" it!

And so begins the "why's" ...

Why does my daughter have to have these huge hurdles to overcome on a daily basis?

Why do I not have the answers and help that my daughter asks for?

Why are people so cruel?

Why won't God reveal His plan to us.. NOW???

Why can't ANYTHING be simple???

I used to ask Why Allyssa? Why did God pick my daughter..???  The answer is crystal clear to me... Because she can handle it .. Even more than just handle she overcomes it time and time again!

 He chose Allyssa because she is an amazing witness to others and directs them to "Our Savior, Jesus Christ!" She has witnessed to several people already in her young life!  From a very young age (2nd grade) reading a children's bible story book with a kid who didn't know Jesus was Alive and Real..to leading two girls in the prayer of accepting Christ as their Savior at Girl Scout camp while struggling with her own anxieties of being away from home for a week with girls she didn't know, to talking with a girl at school who has a lot of the same issues with OCD as Allyssa, but her family is not supportive, so Allyssa tried giving her suggestions on how to get her family to understand and told her even if they don't ever get it, JESUS is always there for her! To just this week being approached at school to do drugs and drink beer cause its the only thing to do to relieve stress.. Allyssa responds with asking this girl if she's ever tried talking with a psychiatrist and even when the girl responds with no I'm not a FREAK.. Allyssa continues on to ask if she believes in Jesus Christ! The girl says she used to go to church, but now she's too much of a sinner to go and the people there just judge her .. So Allyssa says that you are never too much of a sinner, and you can still have a personal relationship with Jesus and not go to church!!  So Yes.. I know why God chose Allyssa.. And I am so very Proud of my daughter, and thankful for her relationship with Jesus! I pray nightly that she stays close to The Lord and Always keeps her Faith! 

 But that is why this latest tic she has developed has knocked the wind out of me, knocked me right off my feet, broke my heart, shook my trust and faith, to be honest...and left me feeling so confused, angry, and helpless.....

(For fear that this post is getting too long and might not post correctly I am going to continue in a new post)

Please Lord.. Asking for a better day tomorrow!

Life is Amazing

I reclined back in the lawn chair today and watched to beautiful sky as I listened to the joyous sound of Adilynn playing!! Did my heart good.. Very relaxing..I took a picture to share with everyone (top pic) And then came across the saying and picture on Facebook after I came inside!! (Bottom pic) Love it!!!

Oh the Amount of Courage it must Take..

Today as Allyssa was walking towards me in the school hallway ( I was there signing her out early for dr appt. to determine if a medicine increase is in order) I could tell she was upset, face was set in that way I've come to know that she is going to lash out but at the same time her head was hung and shoulders slumped which I've come to know means someone's really hurt her feelings! As I continued watching her come towards me I was wondering what had happened this time and my heart was growing heavier with each of her steps closer dreading what was to come! But then I witnessed her raise her head and pull her shoulders back and stand tall and even smile as a teacher walked past her in the hallway! Never showing that she was discouraged or hurt or angry! Until the teacher had passed and then she faded again and by this time was standing in front of me... Her first words to me were "those kids are being such jerks!" You see there was a substitute teacher today and we all know that kids will be kids and get away with what they can.. And they did.. They got away with humiliating a young lady who has already forgiven them and will be kind to them tomorrow and will put that smile back on that lovely face of hers and appear confidant and unbothered! I am in awe of how she does this.. Day after day time after time.. What courage!! But Allyssa will tell me No mom, what choice do I have... This is how it's always been for me.. It's all I know!  Well she can think that way if she wants but I know Courage when I see it! And my daughter and many other kiddos have more courage in their young bodies than I can ever imagine having! God bless these kids!  

So what these kids did was make a lot of noises and when told to stop they would say I can't I have Tourette's .. And giggle.. And continue with the noises! They know Allyssa has Tourette's and they have heard her vocal tics.. But they still found this funny! I know kids can be cruel and I also know that Allyssa's not the only kid getting made fun of... What was 20 minutes of "fun" to those kids will take a lifetime for Allyssa to get over!  So please I'm asking teachers and other adults ...more than stopping the bullying ,please ...just because a child has a smile on their face for those few seconds you passed them.. Please look deeper and get to know these kids, there's a whole lot of hurt going on in there!

Don't get me wrong... Even though Allyssa was humiliated, hurt and discouraged ....she does overcome and she has an inner strength like no other.. But it takes a lot of effort on her part just making it through One day at a Time!

Others have it Far Worse.. But that doesn't ease MY heartache

Some may be reading this and thinking there are so many others dealing with far worse, and they would be correct.  My heart goes out to those that are dealing with the far worse in their lives. One thing that having a "unique" child has done for me is make me more compassionate about what others are going through! And I believe that Everyone has their own heartaches they deal with daily and you can not compare them... For when it is you watching your loved one suffer and hurt, no matter the degree, it hurts, it's difficult, it's stressful , and it is Real! 

So.. here is my story... My daughter was diagnosed at the young age of 6 with Tourette Syndrome and Obsessive Compulsive Disorder... I wasn't really devastated at that time I was more relieved to know why she was doing the things she was doing and why she acted out the ways she did! She had always been what I called a strong willed child, head strong, stubborn, knew what she wanted and how to get it, from early on like 1 year old!  Other than that she was a happy child, normal development, talked early and used complete sentences before she was 2 yrs old, had a vocabulary out of this world, extremely smart.. But oh the power struggles were exhausting!! Her pediatrician kept telling me she was just going through the "terrible twos" early! And I kept telling the pediatrician that I didn't know I needed a psychology degree to raise a 1 or 2 yr old!! I felt like My daughter was always 2 steps ahead of me and I ended up playing right into her plan.. Outsmarted time and time again!  With my daughter being my first I just thought maybe this is how difficult every child is and I just need to be a better mom, a smarter mom, and deal with it! She turned 3 and was still in the "terrible twos" and 4 still head strong and even more power struggles! My mother instinct kept telling me something wasn't right! It was as if my daughter would "purposely" push every button I had and I would give warnings that were ignored and then when I became upset my daughter was devastated!! Truly crushed that I had gotten on to her! Other things started happening that didn't make sense to me.. She would ask me if she could have some chocolate milk and I would say yes and start making it for her, but in the time it would take me to make it and she could see me in the process... She would ask me 100 times "so I can have choc milk" "so you will get me choc milk" "I can have choc milk" every time I would answer calmly "yes" and then finally frustrated I would say "yes!!! What don't you get, you can have choc milk, don't you see me making it?" And she would just drop her head and cry and tell me "sorry" over and over and say"please don't be mad at me"  A couple of years later after her diagnoses and lots of research I found out that these kiddos have to ask things over and over until the answer sounds right to them!  I felt terrible about all the times I had gotten frustrated at her for doing this! My daughter is 12 yrs old now and although that particular hearing things just right has gotten better it still happens and has happened many times over the years, I would like to be able to say that once I knew the reason why she did it I handled it much better and without frustration.. But that would be a lie!  It did help knowing why she was doing it, and I could be more understanding for longer, but eventually I would get tired and my patience wore thin and I would get frustrated and still do! I'm only human and it breaks my heart when I see the devastation on my daughters face over something she can't help doing!  

Other things that were happening that lead to her diagnosis was eye rolling, rapid eye blinking, sniffing constantly, clinching her fists and unclinching them over and over, cough/clearing throat over and over... Also lots of fears started presenting themselves, fear of the automatic flush toilets, scared of the wind, and just watching her and seeing how she always had to be by me while other kids were off playing.. She couldn't wait in a line she would really meltdown while other kids would just get antsy.. So I researched and had pretty much confirmed that my daughter had Tourette syndrome and with that usually comes many other conditions.. OCD , sensory issues, anxiety, ADHD... A trip to the neurologist and officially diagnosed 30 minutes later! 

One thought I had then and is still with me today is that if you look at my daughter she looks "normal" there 's no wheelchair to let you know she has a disability... There's no cast or braces to let you know something is "broken"... She has no outward deformities to let you know ... But if you actually watch my daughter you will see her doing things that are unusual or not "normal" these are called tics.. Involuntary movements or you might hear her vocal tic barking; coughing, throat clearing, screaming,  but even then you cannot see all that is going on inside my daughter that is overwhelming to deal with. All of the intrusive thoughts and fears.. But believe me you will see the results of all of that in her meltdowns, outbursts, awkward social skills, but you won't understand why she is "behaving" the way she is and unless you are non-judging and compassionate you will assume that she is a spoiled brat that needs her butt beat!!! Breaks my heart.. I've heard it, I've seen the judgmental stares and although I'm glad that my daughter "looks normal" I just want people to be as understanding of the unseen disabilities as the seen ones that have wheelchairs and braces to accommodate that person. My daughter doesn't need a wheelchair but she does NEED other accommodations just the same.. And many others need them too!  My mission here is to educate, get the word out, hopefully reach out to others going through difficult times and draw strength from each other and selfishly this is My therapy!!  

What was once just a saying.. Is now my Life

One Day At a Time... We've all heard it said but if you're like me it probably really wasn't given much thought until one day you found yourself living it!! And then maybe still not a whole lot of thought was put into it until you no longer lived one day at a time but literally hours or minutes or God help us even one second at a time! It's then that a whole lot of thought goes into those five small words.. Or At least that's how it happened for me! And once you have lived through those scary, discouraging, heart wrenching, hopeless, awful, one seconds at a time.. It is then that you realize that living one day at a time is a blessing, is not so bad, is doable!  

You see, my life is not what I had dreamed and wished and prayed that it would be. In some ways it is even more than I could of ever imagined being blessed with and in some ways it is more difficult, demanding, overwhelming than I ever knew possible! I grieve for things that aren't as I think they should be!   Just a few short weeks ago, I was living one second at a time, not knowing how I was going to find the energy or the will to put one foot in front of the other not to mention how on earth I was suppose to take care of my 3 year old daughter, or help my 12 year old daughter that deals every day with not only the everyday struggles of a preteen but also the many obstacles that having Tourette Syndrome and OCD and severe anxiety put in her path, or how I was going to be a loving wife to my husband...I was completely overwhelmed and exhausted.. It is then that I truly examined my life, my purpose, and those 5 small words.. One day at a Time!! And with lots of prayers and lots of support from friends and family.. I have once again survived living one second at a time and am content with one day at a time living! 

I'm excited to share my journey with you as I will take you back in time and then bring you up to the here and now and even on  into the future because although I'm content with one day at a time I know my Lord has plans for me and my loved ones and that gives me Hope for the future! God Bless!