Showing posts with label GAD. Show all posts
Showing posts with label GAD. Show all posts

Tuesday, January 24, 2017

Dear Teacher....

I came across this email from almost 3 years ago, June of 2014. It was the letter I wrote to the teachers, staff & administrators at the therapeutic day school Maggie attended. It was sent to them after her last day of school there. She transitioned back into district in time for junior high. I was sobbing as I read it. I thought I should share it as a thank you to all educators, administrators and support staff because even if no one tells you, YOU make a difference! NEVER forget it! 💜 Thank you for all you do!


June, 2014
Dear S.E.A.L. Administrators, Teachers and Staff,

There is nothing we could build, write, buy or make for you that would ever show our appreciation for the impact you have made in the life of our Maggie!  This chapter may be coming to a close, but there are so many more chapters to come.  No matter how many adjectives we think of, there are not enough to describe or express the range of emotion and gratitude we are feeling. We can call every single one of you magnificent, fantastic, spectacular, grand, marvelous, outstanding, sensational, etc. and it does no justice for your abilities and dedication. A million “Thank You’s” would never cover it! Everyone in your school community had a part in Maggie’s triumph’s!

This was not a road we ever wanted to travel.  It was never a place we even considered we would be. What made this journey the hardest was the people that gave up on Maggie that brought us to you.  We had serious doubts about S.E.A.L.  No one really had anything positive or negative to say about what we were embarking on.  We came in very scared on this journey. What started as a bitter trip has brought us to a sweet, yet sad, curve on this journey.

Maggie came to you out of sync, scared, angry and ready for a fight.  This has been a 3½-year crusade that I can honestly, without a doubt say you won, she won and we won!  Do you realize you won?  Do you look at it that way?  You did!!  On so many levels!  You won her trust, you won her respect, you won her appreciation, and you won her love!  This VICTORY is yours and I felt you needed to know it!  You NEEDED to hear it!

We hope that you never doubt what you do!  We hope you realize what an impact you make in the lives of special needs children.  We hope you see the success that you are!  What you did for Maggie is nothing short of amazing; you helped her find confidence, compassion, patience and understanding.  You helped her find comfort in her ability to control herself and recognize her emotions and to express them. You taught her both academically and emotionally.  You taught her to communicate, to ignore and to tolerate. You taught her as a whole person, not her disability!  You taught us, also!  You gave her more than we ever expected.  You gave her a community to be a part of.  You gave her strength and hope!  You never doubted her ability!  YOU molded her success!!

As we continue to blaze this trail with Maggie, we hope you keep her in your thoughts. We have a long way to go, with twists and turns and ups and downs, but I pray that everything you have taught and given her will keep her moving forward. I’m so VERY scared for her and sometimes doubt my decision to move her, but I know you are all there to fall back on if we need you! For that security, I am so thankful!  

We know she/we will NEVER forget you.  You are all a part of her life story! How awesome is that?  Magnificent Maggie Takes on Junior High….  (to be continued)! 

Gratefully,
The Becker Family



Copyright January, 2017
Sandra Murdoch-Becker
mycommonsensicallife.blogspot.com






Thursday, September 3, 2015

Summer's Gone

Summer vacation here & gone
   not enough time...
      for layin' in the sun,
         watching clouds breeze by,
             or chasin' fire flies.
Another school year crept up too fast.
My kids,
growing and moving at the speed of light.
My eyes & brain unable to fathom
their yearly transformations.
They're excited, nervous, anxious
moving up a grade, new school, college bound.
Yet, if they only knew
that I feel the same...
for them, not me, as they face the new year.


Tears well up in my eyes as they start this yearly journey
   new friends, old friends, maybe an enemy
      teachers and classes, some they love, some not so much.
Homework, quizzes & tests, papers & projects.
Hopeful they'll cope, scared they'll choke.
Pacing and waiting for their day to end...
"How did it go?"
"Did you ace your test?"
My worry usually proven unnecessary
    but occasionally perfectly warranted.
I will stress away the year,
     things will end exactly as they should.
Everyone will have grown,
       I will have aged, too much.
Next thing you know another summer break,
    around the corner.
The process inevitable!

Thursday, September 4, 2014

My shoes...




My shoes are dirty
Though spirited and strong
So far from home
not yet defeated.

They continue the path
and eventually wander off
looking for something anew
amongst the tree's or even the roadside.
Something magical 
to bring back home.
Yet, there is an endless expanse awaiting.

My shoes, no one knows
a place for only me
you can try them
but you won't feel or see as me.

They take me through my life
my journey through time
looking for adventure
sometimes, rough terrain.
Meeting new people
or recconnecting with old friends
they never tire of smiling faces.

 My shoes are worn
They're tired and torn
So far from home
and nowhere near done.

They have seen some miles...
on paths of the countryside
on sidewalks of the cities
in puddles on rainy days
in the mud of flower gardens
in newly fallen snow
in piles of crunchy fall leaves
They still have great lengths to go.

My shoes won't stop
a new path they'll find
until my limbs won't go
and my heart says, enough.

They will blaze trails
into rising & setting suns
to greater lengths
than my mind thought possible
until they land back home
when my journey is done.



Thursday, April 10, 2014

From My Heart

I originally posted this on Facebook in 2011......

From My Heart

October 6, 2011 at 1:27pm


I have given you my all
     and every day I find more
     that I never knew was there.
I have taken you as far
     as our money will take you
     in the medical world.
I have tried to get you beyond the scope
     but "experimental" is out of reach,
     they don't see the NEED!
I have promised you, FOREVER, I will
    help you cope...
    and I will NEVER stop fighting!

You have come so far, my sweet child,
     Oh, if you could only see what I see.
You have succeeded beyond the experts expectations
      but you only feel failure within.
You have cried and begged for another brain,
      but you are so highly intelligent
      you don't realize where you can go!

I have watched countless tears
     I couldn't wipe away
     because you couldn't let me near.
I have missed an abundance of hugs
     because you couldn't be touched.
I have missed thousands of smiles
     because you didn't want to be looked at.
I have seen countless physically, scary meltdowns
      that have left me helpless and broken,
      scared for your life!

Then magically I see these days,
      the light emitting, total radiance,
      it's in your eyes, your smile, your laugh....You are home!

I know now, I can't fix you....
      there's no fixing to be done.
God dealt us this hand
      and he will provide.
We just have to follow the path
      that will take us there.
We will show the world, as God intended,
      that you are not broken.
First, I have to show you,
      Your worth,
        Your beauty,
          Your being,
            Your love,
             Your heart....
That SCREAMS....."I am here!"

Copyright © 2011
Sandra Becker


Thursday, February 20, 2014

11 Years

        Eleven Years ago, daughter number three was born.  She wasn't an easy pregnancy by any means and she has proven to be quite the adventurous, stubborn, non-stop one through these eleven years.  She has had to endure much, as have we and her siblings.  Actually, everyone that has encountered her has had to endure her quirks, more difficult ones through a large part of her time here, than easy.

       As the past four months has flown bringing us to her Birthday, she has blossomed. (I actually hate that word, "blossomed".)  It seems to be that girly word that everyone uses. She has grown, progressed, matured, flourished, evolved, blossomed.... however you want to put it, she's getting it!!

      Things have calmed at home, school has become fantastic for her social/emotional well being, she started playing the harp, and she has quit refusing to do her homework and schoolwork. Being the pessimist that I am, I'm waiting for the bomb to go off.

      She no longer seems to hate her little brother (although she does still become agitated by his existence).  She doesn't stomp around slamming doors. She hasn't destroyed a room in at least a year.  She isn't fighting with us every minute of her awake time at home.  She feels accomplished and proud!  FINALLY!  She hasn't asked for a new brain in a quite some time or wished herself dead.  She is simply, HAPPY!  The only thing we ever hoped for, for her, is happiness!

      No more meds, psychologists, psychiatrists, neurologists or behavior therapists.  It was like a switch was flipped.  Don't get me wrong, we don't have perfection. There will never be perfection. Perfection is highly overrated! Her long list of diagnosis' haven't gone away, but she has learned to cope and overcome.  She is conquering her demons and finding strength in her abilities.  She has found positivity in adversity.  She discovered self confidence!

       I couldn't be prouder of the young girl that our Maggie has become.  I can't wait to see what she will continue to accomplish and throw in our path's!  Through every mountain we've had to climb and hole we've had to dig out of there has always been hope and love!  Yes, a lot of tears and why's and wanting to give up.  Yet, we never stopped hoping, we never stopped loving. 

      Magnificent Maggie will be blazing a new trail in the next 6 months when she enters Junior High.  Back to district, new friends, new adventures and new goals to achieve!  I can't wait to see where this journey will lead.......






     

Thursday, February 7, 2013

You Don't Know...

                 





                         I am the Mom next to, behind or in front of you in the church pew.  I can hear the aggravation in your breathing.  I can feel your stares.  I can see your side way glances and your eye rolls. I have listened to your whispers about my child not participating properly in the mass.  I can see the look of horror in your eyes when my child does not receive communion or dances/runs/skips back to the pew on the rare occasion that my child can tolerate communion.  Then I see the gasps when my child returns chomping and/or gagging because it wasn't exactly what my child could tolerate that day.  Believe me, I know that my child's books/crayons/movements/talking are not appropriate for church (especially for her age)!  I am trying to teach my child to be a part of this giving and loving community.  Yes, my child leaves to go to the bathroom and 10 minutes later to get a drink of water.  Why does this bother you? No, my child can't sit still.  Yes, my child talks.  Yes, my child is disruptive.  Yes, my child crawls under the pews.  Yes, my child bounces her legs, shaking the whole pew.  Yes, my child chomps on gum.  I go through mass witnessing your actions on top of my child's actions and I get irritated, frustrated, emotional. I reprimand the best I can without making a bigger scene and I get more looks and frustrated whispers.  I suck back tears through most of the mass.  I leave in a much worse place than I was when I walked into this Church of God. The one place where we should be accepted! You are suppose to be my Christian Brothers & Sisters.  My child does not do these things to disrespect you or God.  My child does these things because, well, because it CANNOT be controlled.  My child is special needs.  My child has more than one diagnosis: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) an autism diagnosis, GAD (General Anxiety Disorder), ADHD (Attention Deficit Hyperactivity Disorder), SPD (Sensory Processing Disorder), and Impulse Control Disorder.  There are more, but we quit searching for another diagnosis to focus more on helping our child! My child looks "normal".   To most, my child appears spoiled, disrespectful and in need of discipline.
                                                                                                                                                              The reality is.... 
          •  my child's maturity is lacking by at least 2 years, which makes socialization difficult and usually not appropriate. 
          • my child's sensory system is so unregulated that sitting still is impossible, chewing on gum a must, climbing around needed, leaving for the bathroom a much needed "break".
          • my child doesn't understand that what she does effects everyone else.
          • my child has oral sensory sensitivities which make receiving Communion a huge challenge, not to mention many foods!
          • my child is in a constant "fight" with the body and the brain!
          • my child NEEDS your patience and understanding!
                Please, I beg of you, the next time you see a child "acting out" keep in mind what could possibly be going on.  Keep your whispers and eye rolls to yourself.  Dig deep and find some understanding. Don't judge the child or the parent.  Offer help if you can. Most importantly say a prayer for that child, the siblings, and the parents, every day is a struggle! 

Wednesday, May 23, 2012

Another Milestone....



            Tomorrow will mark the end of Lilly's fifth year at Eisenhower Academy.  They have a ceremony called Fifth Grade Farewell before they move on to Junior High.  Eisenhower has been an incredible experience for Lilly and has really helped her grow academically and as a person.  Lilly completed first through fifth grade on high honors, every quarter, all five years.  I am, we are, so incredibly proud of her!  As we celebrate this amazing milestone though, I am also completely broken!  Crying for Maggie!  That she will NEVER have this opportunity!  That I was not able to heal her to a point that she could accomplish this or that she could have the chance to even try!  So often, I feel like such a complete failure in everything I have tried for her!  I had to accept a long time ago, that even though her IQ is through the roof, that she probably was not going to be given the opportunities that Annabelle & Lilly have had.  It doesn't mean I don't fight every day to get her there!  It most definitely does not mean that it doesn't break my heart! Over and over, again!  As her Mother, it devastates me!  I watch those days of complete and total "normalcy" between Maggie, Lilly and Annabelle, where they are equal!  Where Maggie's brilliance shines through with her sisters!  I ask, why not every day?  What are we missing?  It is painstaking!  She has missed out on the academic cultivation that Eisenhower could have given her, going to the same school as her sisters, the incredible music program Dist 86 offers and the friendship of kids in the same area!  I feel there is so much more for her, like she is being held back when she should be excelling!  It exhausts me! As we search for a preschool that is a right fit for Murdoch, the same feelings hit.  I am so thankful that our other children don't have the same struggles that Maggie has, but I know I will feel the same as Murdoch begins hitting his milestones!  It will be a continuous vicious cycle.  As I sit in Eisenhower's Gym tomorrow, I will beam with pride and excitement for Lilly!  I will keep it about her, but I guarantee there will be tears of both joy, for Lilly, and sadness, for Maggie!


 

Thursday, April 5, 2012

A Day In The Life of...

...PDD-NOS, Sensory Processing Disorder, General Anxiety Disorder, ADHD & Impulse Control Disorder!


It isn't right!
The craziness,
The chaos!

Jumping...screaming
Crying...laughing
Bumping...rolling
Pounding...hitting
IT'S ALL WRONG!

Too tired....can't sleep,
Too loud...too quiet
Turn it up...turn it down
SHUT UP!  Please?

Too soft...too crunchy
It smells...it doesn't
Icky...yummy
I DON'T LIKE THAT!

It hurts...it tickles
Hug me....squeeze me
Carry me...put me down
LEAVE ME ALONE!

Too hot...too cold
Too itchy...too soft
Too short...too long
Too loose...to tight
IT DOESN'T FIT RIGHT!

SCHOOL'S STUPID!

I CAN'T DO IT!

IT'S DISGUSTING!

YOU'RE HURTING ME!

MY BRAIN HATES ME!

MAKE IT GO AWAY!

ARGH!

MOMMY?

I LOVE YOU!

In the midst of the chaos, there is greatness! It is just my wish that the greatness would rescind the chaos! ~ Sandra Becker

* Almost four years since I originally posted this and I can tell you there is hope and the greatness does eventually rescind the chaos...and it's BEAUTIFUL!!

 

 

Monday, February 20, 2012

Another Birthday



Maggie turned 9 today.  Yesterday we celebrated with her siblings and one of her Uncles, an Aunt and two of her cousins.  It was a good day for her.  She received a new bike from us and a doll from her cousins that she had been wanting.  However, for the past 2 months have been spent telling her she cannot have a slumber birthday party.  She has one friend she could invite and her cousin who is 4 yrs the younger.  When she was in first grade we were able to have a swimming party at the park districts indoor pool for her with all the girls from her class.  This was the year she spent in an inclusion classroom and had really grown as far as attending school went.  She had a very disciplined teacher and a special education teacher that had gone to a seminar to understand her primary diagnosis, Sensory Processing Disorder.  She was doing INCREDIBLE in this classroom. She had an absolutely wonderful time.  She was, well, a normal kid on this day.  She was a normal 7 year old.  The stimulation didn't bother her, her auditory was on track, her maturity and social skills were both completely age appropriate.  This day was nothing short of MIRACULOUS.  By the time she entered 2nd grade a lot had changed at her school and change is not a good thing for Maggie!  After a rough start, classroom changes and med changes we eventually had to remove her from her school to an out of district school.  She spends her days in a classroom with other children that have diagnosed behavior, emotional, neurological and mental impairments and disabilities.  These children are all there from various school districts surrounding the school, and they are ALL boys.  You can't exactly have a princess party with a group of boys or a slumber party for that matter.  It has proven heartbreaking for me to continually tell her no.  To try and reason with her.  To try and reassure her.  I honestly thought that having the day off of school for her birthday would be considered awesome to her.  Not so much!  It isn't that she wants to be at school, but it has been nothing but an emotional roller coaster ride today.  She was sure that she was having a party even though we had not invited anyone over and there were no invitations.  She was sure that even though I had said no several dozen times over the past 2 months that there was in fact going to be a slumber party.  She is in fact devastated by it all!  Another birthday of feeling like a complete failure as a parent!  Another day of not having a clue how to make it all better.  Just another birthday!

















Friday, February 10, 2012

Nightmare Weekly Appointment

We made our weekly outing to Planet Chiropractic last night.  It is the same routine every week.  We go in, do our exercises, get adjusted, spend 5 minutes with head weights, maybe pick up supplements or pay and go home.  I remind Maggie to not touch things that she isn't suppose to and don't go in rooms, specifically the x-ray room, that she is not allowed in.  This week I forgot the reminders, but you would think that after 14 months of going weekly that it would be a habit.  Not so much!  Here is yet another example of Impulse Control Disorder!  I hate this disorder!  Not that I like any of her disorders, but I really hate this one! 

Another difference with this visit was that we were having our re-exams.  A simple and quick scan of our spine.  Maggie, Lilly and I went in first while Annabelle sat with Murdoch.  Maggie finished and I sent her out to get adjusted and then told her to go sit in the play area, then Lilly and I sent her out to get Annabelle and have her adjustment.  I had my scan and Annabelle came in the room.  They gave Annabelle her scan, Dr. Wolf left the room so we could get dressed and CRASH!  "I hope that wasn't Maggie!"  I said to Annabelle.  (Insert scary Annabelle face.) I leave the room and Dr. Majors says "She broke a picture in the x-ray room."  UGH!  Once again I feel defeated, lost, angry, stressed and ultimately embarrassed!  I want to cry, bury my head and crawl away never to be seen again.  Maggie is with Dr. Jenna and I ask her what happened.  She doesn't really have an answer.  Excuses basically.  I can't even manage an "I'm sorry!" to Dr. Majors or I will break down.  I send her back to the front, I do my head weights for 5 minutes, which involved Lilly coming in three times to tell me how much Maggie is annoying her and won't leave her alone.  I send her out three times.  I walk out to the front to find them in the chairs pushing and shoving as Annabelle is oblivious listening to her music and Murdoch is running around like a banshee! I sit down to talk to Maggie and Lilly and next thing you know Murdoch is crying!  Really?  I look at Annabelle and she said he hit his head on the ground.  So I am trying to quiet him down and Maggie is up and in everyone's way.  I feel like I have the world watching me, judging me, convicting me of motherly stupidity and negligence!  I just need to get them out!  Get myself OUT!   NOW!






Finally out the door and into the van, I am buckling Murdoch and I say, "Why can't we just be NORMAL for 30 minutes!"  I knew as I was saying it that I shouldn't be saying it.  I couldn't believe I said it, but it was out there! 
Annabelle, without missing a beat, "We aren't NORMAL MOM!  We will NEVER be a NORMAL family!" 
I whisper, "Yes I know!  What I meant, Annabelle, is normal, in the sense of behavior!" 
Annabelle whispers, "Oh, sorry!"

Again, UGH!  Finally home, I ask Maggie again about the picture.  I ask her what was on it and she tells me words.  I asked what the words said and she said she doesn't know.  I ask how do you not know what it said?  If you were close enough to knock it down, you should know what it said.  Her response, "My brain told me I needed to touch it!"  I wanted to fall to the floor and cry.  We haven't heard the words "My brain...." in eight months.  She hasn't described anything using those words for so long and I was so happy to have them gone!  I know that when she uses those words that her body is in chaos and it breaks me!  All I could do was hug her and remind her about not touching, not being in the room, etc. 

At 8 years old Maggie is so immature, yet she is so smart and aware of what her brain and body are doing.  Hatefully aware!  I will do everything I can to keep the cycle from repeating, but this is where the anxiety and anger increase, and any self-esteem she has disappears!  Meltdowns become dominant and self hatred presides!   Her impulses are stronger, her sensory system unregulated, and her mind on overdrive.  We will conquer, I will cry, a lot, and things will get ridiculously frenzied.  Everyone will feel jilted, but we will come out much stronger than before!  During these chaotic times I have to remember that we are still better off than most and look to the positive of everything my kids are!

Tuesday, February 7, 2012

Anybody There?

This, by the way, is not meant in any way to make any of our friends feel bad.  It is merely meant for others to know they are not alone!  It may even bring some awareness to others.

I often times ponder what happened to all those awesome friendships we had before kids.  Well, really there was never a "before we had kids"!  Cam Jr. was there from day 1, he was 2 when Camron and I started dating.  Now, granted, he wasn't a 24/7 child for us, but he was just easy!  We could take him anywhere with us and he was happy.  Hanging out at the park, playing pool, going to friends, camping, fishing, canoeing, cooking out, it didn't matter.  He was a constant to our weekends.  We could take him to the car shows and boat shows, things like that.  Eventually though our friends just started to dropped off, some because their lives got busy with their own families.  Some because the older the kids got, the harder it was to go elsewhere and actually count on having a good time. It was actually pretty simple to take Annabelle & Lilly out of the house.  With a four year difference between them, Annabelle was self sufficient and pretty mature for the little 4 year old that she was.  There is a 9 year difference between Cam Jr. and Annabelle, so when he was with us, he actually was very helpful.  It wasn't until Lilly turned 1 and I found out I was pregnant that it became difficult.  Of course!  I was constantly fatigued, and maybe it just became habit, but I didn't want to go anywhere!  Maggie came along when Lilly was just 20 months old.  We really didn't have many difficulties with her early on, but it was just simply hard to get out of the house in an organized, non chaotic manner that didn't stress me out.  Most of our friends already had kids, most of them older than ours, and they had their routines.  It seemed we were always headed to someones, for something.  Eventually it got to the point that I was just declining the invites because it was difficult to get out.  We were NEVER on time, EVER!  The older Maggie got, the harder the hits.  People just didn't get that it would be so much easier for them to come to us.  We didn't know what was going on with her.  We just knew it was hard.  A kind of hard that made it grueling and exhausting just to think about it.  No one really understood!  I always felt I was under judgement.  I was actually told once that I made everything more difficult than I needed to.  Murdoch came along when Maggie was 5,  just 9 months into our discoveries of her alphabet soup of diagnosis'.  We tried to put the invites out for our friends to come here and it was always "But we have more room.  Come over here!"  The difficulties, especially with Maggie, grew more and more frustrating.  I can't tell you how many times I had to go off on my own to release the tears, recompose myself, and come back with a smile.  I cry now at the very thought of those days.  You couldn't take your eyes off of her.  There were times that I thought things were going well while we were out and I would relax a bit, but someone would always come back with "Maggie is...."  or we simply wouldn't be able to find her.  We didn't enjoy being out and the other kids had to suffer because of it.  I would be naive to say it didn't affect them.  I know that it still does.  It's not like I can just pack them up and run out with them on my own.  They feed off each other way too much, then everyone is frustrated, angry or crying.  You can't take them into a store or to the mall.  It is either take one of them or leave them all.  The only places we go together now is to gatherings at relatives and to church.  Thank God church is only an hour long, because it is arduous!  Holidays have become much easier with Maggie, but her maturity is still lacking.  She does things socially that you would expect out of a 6 or 7 year old and she is almost 9.  Things that people often times question and children don't understand.  Did you know that there is actually a diagnosis of Impulse Control Disorder?  Maggie is the epitome of Impulse Control Disorder.  She seriously cannot help herself.  Of course, I have been told that I make excuses for her also.  So, who really knows!  I always thought that I would spend my weekends with my friends and their families hanging out.  Kids playing together, some great adult conversation (that I so desperately need), and some compassion and understanding to boot!  That hasn't worked out so great for us!  Friends are few and far between these days.  Even though Belle is old enough to babysit,  we really can't expect her to be able to handle the chaos that the younger ones dish out, just so we can go hang out with friends.  I know, deep down, that the most important thing is, that we have gained so much more through our children, but I miss our friends!


Wednesday, January 18, 2012

Puzzled by the Puzzle


Originally posted to my Facebook Notes: Tuesday, November 2, 2010 at 10:02pm

I have a puzzle
That is quite difficult
None of the pieces seem to fit!

I've tried this way and that
Upside down, to the left, to the right
None of the pieces are tight!

It's quite a struggle
My mind is numb
My heart exhausted, It's all wrong! 

I have stretched my patience
Kept my composure
Yet silently cry into the night

I'll never give up
This puzzle is far to beautiful
Given to me whole and seemingly perfect!

Yet day by day this puzzle was changing
Things went wrong and pieces would move
My puzzle weeps from it's depths!

It knows more than you think
Aware of the confusion and chaos
That makes it's existence hell in our world!

My puzzle, can't you see, is my beautiful girl
Day by day we piece her together
Hoping today, if just for today, the pieces fit!

The Imperfect Puzzle:  Magnificent Maggie




Sandie Becker
Copyright August, 2009

Tuesday, January 17, 2012

From My Heart

Previously posted in my Facebook Notes


I have given you my all
     and every day I find more
     that I never knew was there.
I have taken you as far
     as our money will take you
     in the medical world.
I have tried to get you beyond the scope
     but "experimental" is out of reach,
     they don't see the NEED!
I have promised you, FOREVER, I will
    help you cope...
    and I will NEVER stop fighting!

You have come so far, my sweet child,
     Oh, if you could only see what I see.
You have succeeded beyond the experts expectations
      but you only feel failure within.
You have cried and begged for another brain,
      but you are so highly intelligent
      you don't realize where you can go!

I have watched countless tears
     I couldn't wipe away
     because you couldn't let me near.
I have missed an abundance of hugs
     because you couldn't be touched.
I have missed thousands of smiles
     because you didn't want to be looked at.
I have seen countless physically, scary meltdowns
      that have left me helpless and broken,
      scared for your life!

Then magically I see these days,
      the light emitting, total radiance,
      it's in your eyes, your smile, your laugh....You are home!

I know now, I can't fix you....
      there's no fixing to be done.
God dealt us this hand
      and he will provide.
We just have to follow the path
      that will take us there.
We will show the world, as God intended,
      that you are not broken.
First, I have to show you,
      Your worth,
        Your beauty,
          Your being,
            Your love,
             Your heart....
That SCREAMS....."I am here!"


Copyright © 2011

Monday, January 16, 2012

Patience Please

Here is a past post I wrote that was only published on Facebook.  It gives you a little background and the reasons for a lot of my craziness. 
                 
                      There came a time when Annabelle was 4 and Lilly was newborn and I was begging God on a daily basis for patience.  Where is it?  I can't do this!  Hello?  Are you listening God?  Nothing.  I battled and battled daily not to explode and couldn't understand why God wasn't helping me.  I spent the first year of Annabelle's life home with her and thoroughly enjoyed it, and was now again three years later doing it again with Lilly.  Only this time was much different.  I had a very active 4 year old to deal with as well as Lilly as a baby.  I was sleep deprived and overwhelmed in every aspect of my life.  Don't get me wrong, I didn't want to work, but WOW was this hard!!  I was still praying 15 times a day for patience and still didn't feel like I was getting anywhere.   A year later I found out I was pregnant again.  I was very excited for another chance to have a boy!  In Camron's mind we were done having kids so it was a bit of a shock to him!  Of course things got harder. I had literally just finished nursing Lilly, Annabelle was turning 5 and starting Kindergarten in a couple months, I was exhausted.  God, where is that patience I keep asking for?  Again, nothing!  Daily tribulations continued.  I fought myself to stay in control and continued on with life!  Maggie came along 4 months before Lilly's 2nd birthday.  Seemingly perfect!  Perfect APGAR, perfect face, 10 fingers, 10 toes!  She nursed, she slept....Life was good, except for that patience thing!  As time went on and the girls got older, I really was in need of patience.  Begging God, PLEASE SEND ME SOME PATIENCE!  NOTHING!  As Maggie got older we noticed little things didn't seem right, she wouldn't respond when talked to, but her hearing tested fine, her vocabulary was slim at best, but improved quickly after mention to the pediatrician, eye contact was little, she would NEVER EVER wear clothes, pulled her diapers off constantly, would rip pony tails out of her hair, and was impossible to potty train, constantly fighting with her sisters.  I needed that patience more than ever now!  Maggie started preschool in September after her 4th Birthday on February 20.  We didn't get very far into it when the teacher was complaining daily, Maggie won't listen, Maggie won't share, Maggie is screaming at us, Maggie is hitting staff.  I took her to the Pediatrician and he immediately said Sensory Processing Disorder.  I said "What?"  We went and had her evaluated with an Occupational Therapist, Physical Therapist and Speech Therapist.  They felt she only needed OT.  It was an hourly struggle with Maggie.  Her brain couldn't process her senses properly basically causing a traffic jam of signals to the brain.  The poor girl was in total chaos all the time.  I read books, researched on the web, changed her diet, but it did very little for her.  PATIENCE WHERE ARE YOU?  What?  I'm pregnant again?  Um, God, I asked for patience not another baby!  Thank God it was a boy!  Murdoch was born June, 2008.  Psst God, where is that patience?  We have struggled as a family through the past 4 years and added ADHD, General Anxiety Disorder, Impulse Control Disorder and even have an Autism Spectrum Disorder diagnosis.  We have tried so many things and so many things are out there that could help, but insurance won't cover them because they are experimental and we would have been out on the street long ago had we tried to pay out of pocket.  In the mean time I learned you had to take things minute by minute with Maggie because her senses could change in a nanosecond.    I would hear from friends & family what a great Mom I was and how incredibly PATIENT I was.  I would say "Are you crazy?"!  I still felt on the edge, I was losing my mind.  My whole sense of self was out the window a long time ago.  God help me, I thought!  Then it hit me the other night as I was standing outside in the frigid winter cold watching it snow (yes I was hiding from the kids), He answered me the day Maggie was born!  God gave me Maggie and every bit of her quirks to show me that I had it all along.  He was saying "Hey Sandie, you already have the patience, you just have to dig down inside and find it!"  I didn't have a choice with Maggie.  Maggie couldn't stand for impatience, it would just set her off and make things worse.  It took me a while to figure this out, and I still lose it once in awhile, but I am a better and more patient mom because of Maggie! Annabelle & Lilly both also deal with some of the same sensory issues that Maggie does, just not to the same extreme & they both have ADHD. Patience is not an easy thing with 3 girls, especially 3 who all have disorders!  I guess some of those people are right, I am patient.  So I no longer ask God "Why would you trust me with a child with so many difficulties?"  I know why, I asked God for patience!