Our Sweetest Michael

{Slow and Steady wins the Race...}

2012-03-12T13:35:00.008-07:00

You hear them all the time…. “One step at a time”, “slow and steady wins the race”, “take baby steps”……
It all starts with one movement, one thing to get the big ball rolling. {ONE BABY STEP}
One afternoon during Christmas break 2011 while at Jennifer’s house, I hear Jennifer say “Michael come see what’s on the counter, climb up here.”

I looked{admittedly not right away}, I see Michael get up on his knees, his arms stretched up and holding onto the edge of the counter. I’m holding my breath…. in my mind I’m saying “Ohh please, please, please, slow and steady."could this be The moment? The moment we have been waiting for? The moment when Michael realizes there is more to the world than what is on the floor? The moment his brain tells his legs what to do?

YES!

It is it is That moment the one that starts it all. We have Lift off! Arms pull up oh! There is one leg and two legs, we are standing! But wait it gets better!….Not just standing but Michael then starts to creep around the island……. And we’re off! I now start to breathe {as I wipe the tears away so I can see} not just your normal breath but the breath of relief and admittedly the breath of UMPH I TOLD YOU SO DR’s.
You see, it wasn’t all but 3 years ago Dr’s were telling us Michael would “probably” not walk. As a parent I could not believe this. I could not believe that my son who had NOTHING wrong with him muscularly or skeletally would not walk.

“He has a brain abnormality not a muscular, skeletal abnormality.” We would say.

I can’t tell you how many times we TOLD Dr’s that since it is a brain abnormality then we can retrain Michael’s brain to make the connections needed to walk. Much like a stroke victim would need to retrain their brain after a stroke, and time and time again we were told by Dr’s that because Michael was born with this abnormality that it could not be treated like a “brain injury”. “WHY?” If you can train a brain to do the things it needs to do after an injury like a stroke then why can’t you mold and form a “NEW” little brain to compensate for itself and function the way it is suppose to?

Well…YOU CAN! And Michael is proof!!!

So now in just this short time in just 2 months we have gone from creeping around counters to me saying “Wait for Mommy Michael!” as he takes off with his walker not giving any regard to my request what so ever.

I can’t tell you how much I love that I have to now chase after Michael…

Scooting is slowly becoming a thing of the past. Slowly but surely we are winning this race! Now the world is showing Michael all the things he has been missing while in his chair. Suddenly the shampoo and conditioner on the bottom shelf in the grocery store is interesting, suddenly we are now bombarded with a string of “what’s that’s” all over again.
His world is bigger, no more is he confined by the bounds of his wheel chair and where we choose to take him but, where he is going to take himself. A world where if Michael is tired he walks himself down the hall and climbs into bed on his own, a world where if he wants to go play he just goes. A world where I am told {as I get his chair out of the car}..

“NO! Mom, Mike walk”

Nothing makes me happier than to abide by what he is telling me in his most demanding little voice and let him walk. I will not deny him his request. I don’t care if it takes us an hour to go get milk at the store…{slow and steady wins the race}
Michael is winning this race, Michael will not be beat. I have learned one thing and that is enjoy each wobbly, unsure step this life has to offer AND don’t give up, NEVER give up. Take baby steps, Take one step at a time …Slow and steady wins the race.”I love you my Michael Allen, You continue to prove every medical professional wrong, and you are winning this race son. I will be waiting; arms wide open for you ALWAYS at the finish line.

{Give Thanks}

2011-11-23T10:51:00.000-08:00

It has been a LONG time since I have posted. I have let life get in the way. This year has been a huge year for us allot has changed. We have many things to be thankful for this year.

Mike turned 5!!.....
This time last year Mike was barley saying 5 words now we can't get him to stop talking, this is such a blessing. He has gone from a boy who is frustrated to a boy who can now tell us what is on his mind. This has helped reduce his frustration SO much. He is in his last year of preschool. I can't believe how time has flown by.

Maddy turned 15 {almost 16}.....
She is such a beautiful young woman now. I love our time together and they many talks that we are able to share. I am so thankful that we have such a close relationship that she can talk to me about everything. She is in her sophomore year and doing very well as always.

I lost my job.....
I know your saying to yourself, How can she be thankful? Well after 10 years my job was taking it's tole on my emotionally and so now I am able to focus on my family and now I am going to school. This has been a blessing beyond words.

Al is still plugging away.....
Oh what to say about my Al the love of my life my center. He works soo very hard to provide for his family. He is a true man. He doesn't stop working even when his work day is over, he comes home and focuses on our little family. We love him soo very much.

All in all ups and downs this has been an excellent year and we are sooo incredibly thankful for each other, our health, our family and friends.

Happy Thanksgiving everyone. I hope you can to find all the things in your lives to be thankful for.

{Good Days Ahead!!!}

2011-08-22T09:24:00.000-07:00

It has been too long since I last wrote about our journey.
Michael is not the same kid as he was when I last posted. He went from just saying some words to not being all that limited on what he can say {take that DR’s!!}. Our little boy has fewer behavior issues due to his increased communication, and an imagination beyond this realm.
{He is definitely catching up to his age in a lot of respects}

Recently I was let go from my job of 10 years with T-Mobile.
This was a good thing as the job was far too stressful for me to handle work and my life outside of work.
My new journey begins this fall!
I have spent a lot of time wondering why we were given a child with special needs other than the typical response of “God doesn’t give you more than you can handle”.
I feel very strong in knowing why now. We were given Michael so that we wouldn’t be so self centered. So that we could see the world for what it is {not always a good thing} and to help others.
I will be going to Western Oregon State University to get my teaching degree and get my masters in special education. I feel attached to these kids and want nothing in this life more than to be able to empower them to become strong, independent people.
My husband is so very supportive even though it will probably mean some pretty lean times he stands behind me 100%.
In addition to everything we are adding a new member of our household her name is Miki( pronounced Meekee) she is a beagle and we will be training her to be a therapy dog for Michael and of course she will be spoiled rotten and loved very much. I can’t wait to see the relationship Mike and Miki will have

I could not ask for more in this life. Life is good!!

{Rainbows…I saw the End!! For Real!!}

2011-02-22T10:05:00.000-08:00

The other day Michael and I were on our way to OHSU for a doctor appointment. It was overcast but breaks of sunshine were coming through. I experienced something for the first time in my life…

I was at the END of the rainbow……FOR REAL!!

I have to say, it was kind of an emotional experience for me. I was in awe as I could see where the rainbow met with the earth right in front of me. The sudden feeling of being thankful was almost too much to bear as I had to hold back my tears{so we didn’t get in an accident}.
It was like how people describe dying, all of your life flashes before your eyes and suddenly you are thinking about all the people in your life that are important to you. The people you love.

As a child I always wondered what is really at the end of the rainbow. I am proud to announce it is better than the anticipated pot of gold.

Before I had Michael if you asked me what would make me happy to find at the end of the rainbow I would have given you a list of materialistic items, money and all of it would be selfish.
Now I find myself content as I finally reached the end of the rainbow and I have more than I ever dreamed of having in this life. I have many people in my life that I love, cherish and am so thankful for.

My son, Michael is one of those people.

Michael my sweetest boy, you were worth the wait to see what was at the end of the rainbow. You have changed me forever, you have opened my eyes to what is truly important in this life and I am a better person because of you.

{Then there were TWO}

2011-02-18T09:50:00.001-08:00

In the beginning our journey as a family consisted of 3 people, Al, Maddy and me.
Maddy had the privilege of being “the only child” all attention on her.

Then came Michael, one winter day I was home taking care of Al as he had just had neck decompression surgery I went to the pharmacy to pick up his medications. While I was there it dawned on me that I had not had my cycle yet that month. This was nothing really unusual as I had not had a “normal” cycle since my gastric bypass surgery. I went to the isle and picked up a test. I of course picked up the least expensive as ALL the previous tests had come back negative. I was truly not anticipating anything different this time.

When I got home I gave Al his medications, went to the restroom and did the deed {I peed on the stick}. Setting it aside I got sidetracked taking care of Al and proceeded to start moving furniture from the basement to the upstairs. The day went on and it was time to help Al into the shower. It was at that moment I glanced over and found the test I had forgotten all about. “Oh My God!!!” I yelled out “It is Positive”. Needless to say I had to go to the drug store and buy 2 more tests to convince myself and Al that this was a reality.

Then there were two..

Maddy went from only child to “sister” with one pee. We were not expecting this to happen {into our 6th year of marriage} in fact we were already planning on what we were going to do after Maddy was done with high school, now we had to figure out how to tell our “only child” that she now had to share us. Not only that but the age gap, how do you raise 2 kids with 10 years between them to be close?

We started in the delivery room. Maddy got to see the show up front and center, and in the end she became “the big sister”.

Over the last 4 years Maddy has done well and I think that the age gap actually helped in the respect that we do not have the sibling rivalry although, now that Maddy is a teenager she does get quite annoyed at her 4 year old brother’s antics at times.

Their relationship is a work in progress. It is difficult for Maddy at times. Just like it is hard for us she has a hard time accepting and dealing with the behaviors Michael displays. He wants her constant attention and as a parent we want her to but the reality of it is that she is a teenager and Michael is 4.

We can not predict the future, we can not make them “friends” but we can be patient, sit back and watch their relationship grow into what ever it ends up being.

Regardless they are ours we love them both the same.

Do you have children with large gaps in age? How has it turned out for you? What do you do to keep them close?

{Little Adventures}

2011-02-16T11:19:00.000-08:00

Looking back 3 years ago, Michael was barley sitting up on his own he was still very wobbly, no sounds other than crying and no real acknowledgement to his surroundings.

Four words come to mind, Sadness, Fear, Resentment, and Anger.
That was a difficult time for us. We were so fearful and full of sadness that we did not know what was to become of our little boy. Will he ever be able to play, to pretend, or laugh?? The feelings anger and resentment because one of our family members had a baby not to long after Michael was born and he was enjoying all the things a 1 year old would normally enjoy.

All of that is now becoming a distant memory.
Fast forward to present time, Michael now age 4 and doing the things he should be doing. Who are we to say “He should be doing this” or “He should be doing that.” Michael is Michael. Michael is growing, learning, and playing in his own way {Michael’s way}

Oh how we love it!

Yesterday as I was picking up toys at the end of the night I realized just how lucky we are. All the time I hear other mom’s say “They grow up so fast” as I hear them say this I can think to myself how lucky we are that we get to have Michael as our little baby boy just a bit longer than the rest. We get to take our time and grow with him at his pace and enjoy every tiny detail.

In the last 6 months Michael has really started to do a lot of different things. He is talking so much more and starting to put words together to make two word statements. I love this! I love hearing my name “Momma”, I love that when I drop him off at school he doesn’t want me to leave calling out to me “Momma”. I love that at the end of the night he tells me “Momma Pillow” to indicate he wants me to lay down with him.
I love all of these things!

We are now taking trips, little adventures….

We have been able to see our little boy express his imagination. He goes around the house with his airplane saying “fly” he wants to go on a trip. He takes us along in his play. We get to be his co pilots and what an honor this is. We can pretend we are going into outer space, and if you ask him if he wants to be a space man he gets very excited and loudly says “YES” and that he needs a “mask”.

We also take trips in his tent. Never did I think 3 years ago that someday we would be crawling under the dining room table. The table with a blanket draped over it, a string of flip flop sandal novelty lights hung up underneath and pillows and blankets inside to create the perfect get away.
His tent, a place where he likes Mommy and Daddy to come and lay with him, a place where he can sit and look through his picture book pointing at objects and trying to say what they are {successfully a lot of the time}

We take trips to the park {the living room park} where Michael will lay out a placemat with his empty cup and plate, where he puts a pillow on the floor calling out “Momma pillow” for me to come sit on the pillow at his picnic. A place where the cup and plate are not really empty at all in our world as he lifts the cup to my mouth and says “mom juice” so I can have a drink, then the plate so I can pick up the invisible sandwich to eat it.

I love our new places, I love that we can go anywhere and we can go together now.
I look forward to many new adventures in far away lands.
Thank you for taking us on this journey with you Son.

{The most perfect day}

2011-02-10T13:09:00.000-08:00

I woke up at 5:30 am yesterday to a sweet and happy boy. This to me is my sweet spot. The place where my sweet, boy is not filled with frustration and anger.

After the week we had it is like being able to breathe again. {He is very cyclic}

Here’s what a perfect day for us would be, and was.

We ate some breakfast, watched a bit of T.V. Daddy came home from an early am job he had to do and played with Michael for a couple hours before he had to go back to work. Then the thing I look forward to....nap time. Oh no not just for Michael. No, this momma has stopped taking advantage of his nap time to do things and will usually lay down with him. Yesterday’s nap was a record 3 hours 8:30 to 11:30.

Daddy came home for lunch. Then off I went to take Michael to school. Yesterday when we got to school it was different. Normally when I take him as soon as he hits the floor he is saying “bye” to me and scooting off to play. Yesterday he got on the floor, started to do the whimper cry and say “Momma, Momma, and Momma”. I know sad right? Still it was a perfect thing to happen. He wasn't screaming and throwing a fit but rather, he was being quieter and using his words. {Our inside voice coupled with emotional expression. Progress!}

While Michael was in school I went to get some things done and when I returned to get him I was early {usually the case with me I have phobia about being late}.
I was very excitedly greeted by his teacher and physical therapist. Open arms and hugs as I was told Michael used his walker to walk in class.
Of course it was at that moment that it was everyone’s time to leave. Eileen prompted Michael to stand {verbally} he then turned around to stand in the walker and held on correctly. Michael started to walk! Eileen was walking behind him but not supporting him. He was doing it by himself. At one point a couple of his class mates started saying “Come on Michael you can do it!”During the huge event I was standing behind a door and peaking around the edge so I could see him but he could not see me. I was sobbing like a baby {quietly of course}. As soon as Michael saw me he was all done. He sat down in his chair and the many praises flooded from me to him.

Son we are so incredibly proud of you. You continue over time to beat the odds. You keep pushing on. We are so thankful you chose us to be your parents. We love you

{I am the Child}

2011-02-02T07:52:00.001-08:00

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

Author Unknown

{Time to LIVE ~ LIVE ~ LIVE!!!!}

2011-01-28T10:17:00.000-08:00

Over the last 4 years Al and I have worked opposite shifts to limit Michael’s need to be in someone else’s care. I have to say this has been really hard for all of us {Al working Mon-Fri, me working the weekends}.

It is TIME for a change, TIME for us to connect as a family. It is TIME for us to enjoy our family again.
I feel we have been doing a decent job at juggling family time and our need to work but it is taking its toll. We find ourselves feeling more like roommates and caregivers than husband and wife or Mommy and Daddy. We find ourselves feeling trapped.

Every 6 months I am faced with changing my schedule at work. This usually brings me a great deal of anxiety as I am not one for change. This shift in schedule also tends to take a toll on Michael as he also likes to have a routine.
This time it is different. This time I am looking forward to the change. I think for the first time in nearly 10 years of employment there.
With this change will come a bit of a financial decrease but the benefits far out way the lack in income.
Since Michael has been born we have only been on 1 family camping trip when he was less than a year old. We honestly have been fearful of taking him anywhere overnight as he hasn’t quite grasped the concept of an inside voice or how to behave himself in public {we are working on it believe me}.
We tend to do everything based on “is Michael going to have a melt down?” We assume he is going to have an issue because time and time again we face the evil stares from people when Michael displays his dissatisfaction in public places.

Michael has many autistic tendencies but the only way we are going to get him to learn to function in “the real world” is to go out there. Be apart of society and LIVE our lives.

No more will we live our lives for other people to make sure they are not “inconvenienced” by us. They can just deal with it. They can be as upset as they would like or give us the look of {can’t you control your child} all they want.
There are a lot of people, places and things we are missing out on.

It is our TIME to live life and set ourselves free of this prison we have created. This summer we are going to have A LOT of firsts. I can’t wait!!!!

{Can’t wait to see His Brain}

2011-01-27T11:01:00.001-08:00

Those of you who follow this blog may read and think man this chick is bi-polar! I am up then I am down. I think that’s life. {Isn’t it?}
I have to say that having Michael has been one of the biggest challenges and yet one of the most rewarding things I have ever done in my life. Never predictable, Never boring.

This week we went to Michael’s neurologist. He informed me that he does not need to see us any more unless Michael starts having seizures {Thank the good Lord we haven’t}.That there isn’t anything more he can do for Michael.

Hearing this from him brought me relief but it also brought a bit of sadness. My gut reaction was {woo hoo! And suddenly changed to But why?}

Relief because it is one less doctor bill for us, but, sadness because there is nothing he can do for our little Michael. Michael has what he has and there is no cure.
I have known this but I find myself sometimes holding onto the possibility of “a cure”. So when I hear things like this from his doctors I can’t help but mourn a little bit.

We can treat the symptoms of what is going on with Michael. Michael’s case is being sent over to Chris Walsh Labs at Harvard University where they study PVNH and other neurological migration defects to find out why they happen.
I can now hold onto the belief that one day they will know what causes this defect to happen and that somehow Michael was a piece of the puzzle in finding this out. {Who knows maybe one day we will read about Michael in some medical journal, maybe Michael when he grows up will be the one to figure out why this happens} You have no limits my baby boy.

So,that chapter is closed for now, a new one opens and along with it comes Michael’s MRI. I can not wait to get it so I can pop it in my PC and stare at his little brain in all its glory and wonder.
We look forward to these changes. We are embracing the moment. We are treating the symptoms and pushing forward to new things in science.

{Silent NO More!}

2011-01-13T10:32:00.000-08:00

Lately I have posted about a few difficult times we have been having. I write about them because it is REAL life. Life isn’t “happy” all the time, nor is it “sad” all the time.
I feel that in order to appreciate the good moments it is important to respect and acknowledge the difficult times as well.
A time for everything right?? I think Ecclesiastes 3:1-8 says it all. {Oh and the The Byrds did a great version in their song}

So with all that being said, here is a little insight on what has been going on with BOTH sides of the coin.
Michael is in a specialized pre-school class. In his class he receives physical therapy, occupational therapy, and speech therapy. We have a IFSP{Individualized Family Service Plan} in place it’s purpose is to evaluate the needs that Michael has and what needs to be done to help HIM grow to be the best he can be.
One therapy that has been a sore spot for us has been his speech therapy.
Many of you know already or may have picked up by reading previous posts that I do not tolerate much when it comes to those that are working with our son.
The IFSP is in place to not only set goal for Michael’s development but also to hold people accountable. {It is a legal and binding contract}
Last year I called a meeting with his team {those who have a plan in place please KNOW it is your RIGHT to call a meeting whenever you feel you need one!} and speech was lacking in that they were not sending me monthly updates as I had implemented in our plan. I also found out at that meeting that the referral to get Michael an Agg Comm devise was not put in as speech had been instructed to do. Needless to say while we were in the meeting it got signed and put in {this was last year}
Since then it has been one big bureaucratic mess.
Every week when I take Michael to school I am given one excuse or another as to why we are at a stand still.” We are trying to see what will work for Michael” “We are down a person” “we have are waiting on a new speech therapist” {we have had 3 people!} It has now been almost a year NEWS FLASH>> Michael understands picture recognition he isn’t lacking in the receptive side of his brain!

Finally this week I had Enough!! I send an email out to Michael’s entire team yesterday as well has the Coordinator for all of Willamette Valley ESD. Needless to say I received a call after hours last night from her as this is not the first time I have had to involve her to get a situation resolved. I will also be receiving a call from the Coordinator for speech for all of Willamette ESD.

While all of this was going on with Michael’s school, I was on the phone with someone else {they wish to remain anonymous} and they advised me that they would buy Michael an iPad that we can load the communication app onto so he can finally get assistance in verbalizing.

The purpose of the devise is not to rely on it 100% but research has shown that children with developmental disabilities such as autism, down syndrome, etc. actually start to talk more after starting to use the devise in addition to reducing the frustration while in the learning process.
I know I would be pretty upset if I could not express everything I had to say {wouldn’t you?}

So now son YOU will now have a way that you can tell us EVERYTHING that your little heart desires, ask your questions ALL of it!! This is all part of the plan for you son, the plan in developing your independence!

We had a TIME for sadness and frustration and now we get to have our TIME for joy and enlightenment!!!!

{Tick,Tock,Tick,Tock}

2011-01-12T09:38:00.000-08:00

Today is a new day. Last night while I was thinking about Michaels first three word sentence “Dad Hear Heart” {over and over again}, I could not help but to forget about ALL the other events in the day and focus on this BRAND NEW step for Michael and to look back at some other bright moments we have with him.
Michael is not you average kid. He would much rather watch the History Channel, Modern Marvels, How It’s Made, or Trauma Life in the ER than cartoons. Don’t get me wrong he does like his cartoons {what kid doesn’t} but, they do not hold his attention like these do. You can physically see the information being soaked up like a sponge. The look in his eyes screams Tick, Tock, Tick, Tock.

“Heart” was actually one of the first words he said aside from “NO” {his favorite}. While he watches the medical related shows on TV he sees the heart monitor spiking up and down, Michael points to it and says “HEART” {pointing to his chest}. He draws the up and down heart monitors lines on paper and announces “Heart”.
A child his age would typically relate heart to the shape of a heart not to a heart monitor.

We believe Michael is so intelligent and inventive but, his outward body won’t let it out. Everyday he shows us new things some times it’s creepy what he comes up with {not in a bad creepy way but in a, OMG! How, did you come up with or know that?!} Way.

Michael will sit and take apart EVERY toy to see how they work {none of his toys are in tacked or used the way they are intended}. He has done this since he was about 2 years old. He is always putting two toys together to make a NEW toy, or making them relate in some way. You can see in his little eyes his mind is going Tick, Tock, Tick, Tock.

Each day, each week he is always coming up with something new. His latest obsession is {Straws}.The other day I bought him a large bag of neon colored straws {it was that or not get out of the grocery store}. Honestly I was dreading this as all I could envision was me having to pick up all 50 at the end of the evening.
To my surprise when we got them home he spilled them out onto the floor {I had to take a deep breath} and he started putting them together into parallelograms {shapes}. Again, Tick, Tock, Tick, Tock.

Life with Michael does get overwhelming but, it is these moments of creativity, genius, what ever you want to call it that make us step back and realize that. There is a REASON why our little man defied the odds to come into this world {we were told he should not have made it due to the complications I had during the pregnancy}.

Son, you have a beautiful, creative, smart mind. I can’t wait for it all to be revealed!

Tick, Tock, Tick, Tock, Tick, Tock, Tick, Tock, Tick, Tock

{Dark Places}

2011-01-11T18:33:00.001-08:00

Today was a very difficult day for me. Michael is sick and when Michael is sick it is like Linda Blair moves in and takes over. The self inflicting injury, the constant screaming, throwing him self backwards. Really it is like it is not my little boy in these moments

About the first 3-4 hours things are manageable but long about the 4th hour. You can’t take it any more! You just want to scream {STOP!}.
Now the first hour starts at about 4:45 am so about 8:45 am I am trying to get him to settle down and take a nap. Not today. Today he wanted to do everything mentioned above and soo much more.

I finally got Michael to go to sleep at about 12:30pm. I fell asleep to.
Normally I will stay awake as it is my only time to have a conscious, quiet moment to myself {and I want to be awake to enjoy it and or to allow myself to process the overwhelming feelings}.
I woke up an hour and a half later to Michael screaming PANTS! I get up and the time it takes me to grab a diaper and wipes I must have heard him scream PANTS! 10 times. Believe me I have a sense of urgency when it comes to Michael but I could not seem to move fast enough.

It is these moments that I have to even quicker than I got the diaper, go outside because my mind starts to go to {dark places}. I start to cry and become so utterly down on myself for even thinking them.

I wish I could say that the afternoon improved after the nap but it just got increasingly worse. I am careful with my tone and my body language because Michael is smart he knows when mom is at her breaking point and even when I do watch those things he still knows.
I found myself scrolling through my phonebook on my phone wondering who I could call. Who would be willing to come {HELP} me? Instead I found myself in the fetal position on the couch balling like a baby.

Thankfully the good Lord above obviously saw my dilemma and Al came home at 5 rather than 6. Being the good husband that he is he didn’t waste time asking stupid questions. He just went into action.
We needed some things from the grocery store, so Al bundled Michael up and took him to go get the items so I could get into the bath{sorry folks at the grocery for my son hacking and coughing all over you, you should be sick in about 48-72 hours}

I without delay started up the bath and got in it while it was filling up..All of a sudden there was just as much water coming out of my eyes as there was in the tub. I am starting to go back to the dark places again. All the pressures of Michael and worries about work start to take over.
My mind starts to think, I could just lie down in here under the water, would it hurt? Would it be fast? I hate it when those thoughts come into my mind. I can tell you I would never act on them as I do value my life, my son, my husband, and my daughter. It just gets exhausting at times.
Suddenly and oddly enough just as the thoughts came in they go out and my mind is then filled with the song {I will survive} I know the content of the song does not apply but I can’t always control the things that come in and out of this crazy head of mine.

So now Here I sit, typing away letting it all out while Michael is being occupied by Daddy and dinner is in the oven. Soon, very soon in about an hour to be exact it will be bed time for Michael. It is our time to talk about the day and to finish crying it out.

Do you ever go to the dark places? What do you do when you are in them? Do you talk to people, cry, pray, take medication?
Don’t say you have never been there because I am going to step out and say I am pretty sure everyone has had a moment or two in their life.

{Boy in a Bubble}

2011-01-07T10:59:00.001-08:00

Recently I have had the need to change daycare providers for Michael. I can’t tell you how much anxiety this causes us ALL but especially me.
Being a mother to a child that can not yet fully express the things that happen through the day is very worrisome. We are forced into a position where we have to trust another person with our precious Michael. When in my mind I start to think {what if they poison his food, what if they take off with him to another state, what if, what if, what if}
We do all we can to make sure it is a safe, clean, structured environment. We run national background checks {have to make sure we cover it all}, and do everything aside from full on interrogation {with water boarding}.

When I am faced with situations like this it takes me back to the night we brought Michael home. Just 24 hours after giving birth to him, we came home and life was good, then all of a sudden while I was lying on our bed I started to cry like nothing before. Al came in, lay next to me, and asked why I was crying. All I could say is “I didn’t think I would be so sad with him on the outside. I want to keep him inside by belly forever so I can protect him.”
As time goes by I am able to see just how over-protective I am. Sometimes, to Michael’s disadvantage.
I puréed his food until he was a year and a half for fear he would choke. I would think {he has a tiny throat, the food is going to get stuck and then I have to do CPR!} To this day I have to sometimes get up from the table and go to another room because the fear is still there. Thank God Daddy is brave and can be my strength.

When we are in the store or in public places if I even remotely hear someone cough or sneeze we quickly redirect our path to avoid them. In my mind {they might have H1N1, The Bird Flue, or some other God forsaken air born disease}

Then there is the school bus, Oh the bus…What a huge thing that was. The very thought of my little 3 year old being lifted into a bus to go to school terrified me. Even though we knew it was important for his development I had a very hard time with it. Again my mind starts to run away with me {What if the driver is a child abuser? Then I would have to kill him, Michael would have to visit me in prison, I don’t look good in orange, What if they drop him off at the wrong place? What if they get in an accident? What if a train hits them on the tracks? }

The list is long, so long that this particular subject has the potential of becoming a very lengthy novel.

Over time I have learned to suppress these fears of mine but, every once in a while they rear their ugly little heads and I find myself laying on my bed again that night we brought Michael home, wishing he was still in my belly.
Having a child that has special needs, I have more of a responsibility to make sure I do not over-protect him. It is our job to make sure he can be independent and self sufficient. I have to put myself in uncomfortable situations to make sure he is able to experience life the way it is intended. So he can learn and grow.

So, today as I have to take it one day at a time, I will tell the over-protective mom to have a seat, as we have some living to do without her fearfully nagging in my ear.

{ I Love Pancakes! }

2011-01-05T07:47:00.000-08:00

Three years ago we started our journey to find out why our little Michael was not hitting his milestones. Why he was not even responding to sounds, giggling, or looking in our direction when his name was called {utter sadness}. During that time we were told by a pediatric developmental specialist {world renown} that Michael would most likely not ever speak.

Let’s fast forward to present day.
Lately I find myself in amazement over the efforts our little man puts forth in communicating. Behavior issues {atrocious} aside, he is now mimicking the sounds we make. I love that I can carry on a conversation with him. To hear him tell me that he wants to eat, or hear him sing his "ance,ance,ance”{dance} song while he starts dancing in his own little way makes my heart smile.

Not all the words are clear but the sounds are so incredibly close we still know what he is saying and THAT is a great accomplishment on HIS part.
Needless to say, I can now go back to the neurologist that told us to talk to Michael in BABY talk “so he would understand us” and tell him he was WRONG. No! I will not talk to our son like he is less than intelligent. I will talk to my son like I do anyone else in the world. As time goes by the sounds become more streamline and form the actual word.

In addition to words he is now starting to verbally express emotion. No, not just in the screaming when he is throwing a temper tantrum. But, actual feelings!
I made Michael some fruit laden pancakes the other day {fruit hidden of course} when, all of a sudden Mike said to me “Mom” to get my attention, then he pointed to and said “takes”{pancakes} then pointed to his chest and said “heart”{which is clearly heart}. I repeat words back to him when he says them. This time was different, this time he kept repeating “takes heart” he must have said it like 6 times. I stopped, looked at him and said “Why do you keep saying“takes heart?”
Thank God daddy was there because he had the utter epiphany. He said “Mike you LOVE PANCAKES?” Michael’s eyes lit up so bright {bigger than life}, he got a huge smile and said “yes”. He then stopped repeating the words because we got it! Michael let us know He loves the pancakes!! This was followed {of course} by a lot of praise, clapping and doing the silly dance to celebrate this new breakthrough.

These events make it all worth it for me. All the days I have felt like I have played one big game of charades, have spent the day telling him what things are a gazillion times when he asks “what’s that”. I am able to sit back and be so very proud of our little man for not giving up, and being so patient {mostly} with us while we teach him new words or try to figure out what he is telling us.

I will never tire of hearing your little voice our little Michael. It is music to my ears.

{Inside Me, Why I love}

2011-01-01T07:55:00.000-08:00

This is me wide open, it explains a lot about the person I am today. This is why I love the people in my life today more than words can describe. I value relationships {true relationships} as they are very precious gifts not to be taken for granted.

That being said….Let’s start from the beginning; my mother married a man when I was 10, when they married he looked me in the eyes and told me "I already raised 3 kids of my own I don't want to do it again".

I was 13 years old when my parents had heard of this "boarding school" for girls from some of their friends at church. At this point in my life I was mouthy and failing in school but I had not yet done drugs etc... The worst I had done at that time was to sneak out and toilet paper a friend's house. My mother's husband was very verbally abusive; she told me she was sending me there to save me from a horrible life with him. According to my mother divorce was not an option that she wanted to do again in her life. I went shopping with my mother for new clothes that would be suitable for the school as I was still under the impression that it was your typical boarding school that you would see in the movies.

When we pulled up the dirt road to the school I was ok until I saw what seemed to be a 50 foot tall chain-link fence with barbed wire on the top and a very large gate that automatically opened for us to drive through. We were met in the entry by the staff along with a couple of other girls. They allowed me to say my good byes to my mother, it was a very tearful one as up until I was 10 it was just me and my mother. She was my life.

They whisked me back to this institutional like bathroom filled with a horrible sterile smell, told me to get undressed, take a shower and wash with lice soap. I was a basket case. I had been on anti-depressants and I was told I would no longer need them so they just abruptly took me off my medication {I found out as an adult this could have caused adverse side effects}. I was put on buddy{the only person I was allowed to talk to, and had to walk behind at all times} and did not like the girl I was paired up with nor did I like anyone there as I was your typical teenager who did not like being told what to do. I also had a pretty severe issue with lying. It seemed I would lie before I could even think about the truth. These behaviors led to some horrible events in my life.

I was placed in the GR{get right room}.This room had plywood walls, industrial office carpet, 1 small light in the ceiling, and an industrial lock with a peep hole on the outside of the door. I was in there for several days on several occasions.

My food was brought to me, I had to listen to fear based Preaching tapes, and I was allowed only to leave the room to take a shower.

When I was not in GR, I was sitting in the corner writing sentences all day and was not allowed to go to school while in the corner. I wrote sentences in the corner, ate in the corner, and the only time I was allowed to come out was when it was time for chapel or bed.

At one point I was made to stand all day in the dinning hall with my nose to the pole while the entire school and staff went on with their day as usual.

We were made to write the book of James if someone said “oh my gosh”. We had huge dorm searches where girls under things would be put on display. If a torn fingernail was found on the floor they would round us all into the dorm until someone would confess and if they didn't we would all pay the consequence.

We had to endure an activity called sheep and goats. They would label each girl either a sheep or goat. Goats got nothing but to go back to the dorm and have quiet time while the sheep got to have a party.

I was called a “puke”, a “liar” and several other things I have managed to block from my memory.

I wrote letters to my mother that never made it to her as I was told I was trying to manipulate her. I finally got to see my mother after the first 30 days, all I could do was cry. I tried to tell her what was going on but she was being manipulated by the staff with their fake concern, fake smiles, and were so nice to me while she was there.

I finally got smart and "got saved" several times in fact, as that seemed to be the only way I could get a second chance around there.

Life in hell went on and it was pretty much one tumultuous event after another. In 1989 my time was over, my mother took me home and I was enrolled in a Private Christian high school. I was out for 7 months. I did start to behave worse than before and sneak out of the house more and more. Finally, my parents said “Let’s go visit Victory”. Me being so utterly stupid agreed, not that it would have mattered if I opposed.

We went on a Sunday, I sat through Church service with my parents and immediately after the service we were greeted by the staff at which point we were invited to stay for lunch. Needless to say once the girls left the chapel, the staff and my parents took me into a room and told me I was not leaving.

My heart sunk. I remember waking up the next morning, looking at the cinderblock walls painted blue, crying, thinking “Oh my God I am here again.”

This time I had learned how to play the game from my previous stay. So no GR or corners for me this time. However one early morning not to long after I had arrived maybe about 2 or 3 months, I was told to get my things together, get dressed, that my mother was on her way to go on a plane with me to Florida. I was actually excited as I hated the walls of the Ramona school. My mother and I flew to Florida . When we got to the airport in Florida and we were greeted by the staff. We were taken to the {Jay, Fl} school, it was this huge house almost mansion like. It was a totally different world as there were only 3 other girls there besides myself. We ate at a normal dinning table in the kitchen and got to have seconds. We went to this little church in town ran by Brother Jimmy who seemed to spit saliva every time he preached. They had a horrible choir; the song "Turn the radio on" still is remembered. We did our school work, worked out in the yard, took trips on the tractor, chased snakes around the property and chopped of their heads. Life was what seemed to be better there.

Still the indoctrination continued and we were still basically told that women were the lesser of the human species.

While there I received a phone call from my mother and she told me that her and my step-father were getting a divorce. “Right On!” I thought as I was under the impression that would mean I was coming home. Oh how life had another plan entirely for me.

My mother who was manipulated by the staff decided that it would be a good idea for her to work at the Ramona school so she packed up all her belongings and moved there. She made 300.00 a month to run the kitchen. The difference between my mother and most of the other staff is she genuinely loved the girls. She thought she was doing what God wanted her to do. Once my “time” was done in Florida I was put on a plane only to return to Ramona to live. Not as a girl in the school, but, a “staff kid”. This was different. I hung out with the owner’s daughter and her husband, was taught how to drive in the staff vehicles, and would sneak into the walk in refrigerator with my mom in the middle of the night to eat left over desert. After a few months the Ramona school was officially closed by the state of California. My mother and I stayed at the school until the last girl was either transferred to Florida or went home with their parents. Once closed it was desolate no one was there but my mother and myself. Oh how eerie the place was and so full of residual negative energy.

My mother and I packed up our van and drove cross country to the Florida school where she and I lived for the first few months in a 20' travel trailer. I would go to school but would hang out with the girls most of the time.

In 1991 my life took yet another unexpected turn. My mother told me one night that she had received a phone call from my step-father; he was going to be in Louisiana and wanted her to go there to meet him for the weekend. I begged my mother not to go as I knew how utterly manipulative he was, a real womanizer. I told her before she left that I knew if she went that she was going to get back together with him. She assured me this would not happen. So off she went, she came back and told me what I knew was going to happen all along. She was getting back together with him! I was upset as I never developed a good relationship with him. I never thought for a minute that I would be placed back in the school as a girl in the program. Unfortunately that is what happened.

My mother got married at the Florida school; I was then placed back in as a girl in the program while my mother and step-father left to go live their lives.

I was told I could leave when I finished high school. When I was placed back in the school I sometimes think that Mrs. P felt sorry for me because she would allow me to go on the weekly all day shopping trips. I was able to go spend the night at the staff's houses ,and use the phone when I wanted with in reason.

I finished my paces {school workbooks} early, a year earlier than I should have because I wanted to get out. All I wanted to do was to be with my mother.

My mother paid for and reserved my dorm room at Pensacola Christian College as that is where I was to go after high school however, I had different plans. My mother and step-father came for my graduation and they took me cross country to go to their new home in Oregon for the summer until school started. Once we got to the West Coast I told my mother I did not want to go back to Florida. I was finally 18 and they could no longer dictate to me where I was to be.

I enrolled in the local community college in Oregon but all of a sudden I discovered men, drugs and all the things that I had been previously accused of by the school but had not yet ever done.

My life has gone from being very hurtful and challenging to at the present time, very rewarding, meaningful, and love filled. I am going to be 37 years old. I am married {almost 11 years} to THE most understanding, loving, patient man. I have a beautiful 14 year old daughter , and a very challenging 4 year old little boy.

Do I say all of this to feel sorry for myself, NO, I say all this because..Had I not exsperienced this portion of my life I would not now KNOW what true love and trust is today.

For those of you in my life who I have ever told {I LOVE YOU} to..KNOW that I mean it.

{Precious Gifts, Our Year in Review}

2010-12-15T17:54:00.000-08:00

This year has been a year for the record books.
I will start with Al. My husband {my Rickey Ricardo} is the most amazing man on earth; he due to no fault of his own spent a year and a half looking for work all the while enjoying being a stay at home daddy after he lost his job of 8 years due to the economy. This year in May he found a job! Not just any job the lucky man found a job that he loves and they value his hard work, his opinion and his extreme work ethic.
{To my man, I love you, appreciate you, respect you, and am the luckiest woman in the world to have you as my life long partner. I love being your Lucy although; sometimes we are more like Gomez & Morticia from the Adams Family. You are my forever love.}

Our beautiful daughter Maddy chose to go to a different high school than all of her other friends because she felt it would benefit her future career and college education. This year she has grown up so much. She has maintained excellent grades in this her first year of {big kid} high school. She has maintained her extra curricular activities with her piano and voice lessons; as well she has taken on a new interest and is now on a swim team. She has developed such good communication skills, and we as a family unit have been blessed with the ability to talk about {ALL} subjects not matter how big or small, no matter how easy or difficult.
{ To Maddy, you are gifted through and through, your heart is beautiful and I love that you love yourself enough to do what is best for you. I also love that although you will be 15 soon, you trust your dad and I to talk about your life {the behind the scenes version} and the challenges that you face. You, our sweetness are the best daughter we could have ever hoped for.}

Our Michael Turned 4 this year. He started the year with only 1 word, “Owie”. Now he can say, Owie, No, Yes, Hair, Toe, Arm, MOM, DAD, Hand, Rope, Coke, Pop, Ice, Eyes, Nose, Wet, Light, Car, It Hurts.. I am sure I am missing a couple as it seems lately these days they just pop up out of no where. They are fighting to get out and they do{ like little word burps}. He is in his second year of preschool and he loves it {especially circle time they do yoga} He loves to come home and show us his new stretches. He has also become quite the performer, constantly going around the house singing songs {not all words known} and he usually ends each song with big, arms up in the air finish {like tahdah}.
He loves arts and crafts {and I love receiving them}.
{To Michael, you my son have achieved so much this year, I love that more and more we are gaining the ability to talk to you and have you talk back to us. Hearing you say Mom is the best gift you could have given me this year as I have waited 4 years to hear it. That my son is huge and something that the doctors said would probably not ever happen. You are going to grow a lot this year I know you are. I can’t wait to see where you will be this time next year}

We have also gained new family this year, Clifton, Carrie, Blaec, Baylee, Cj, Liam, and Reagan. We love them so much and the love they have for us and Michael is not a mystery. We have truly been blessed to have them in our lives.

{Farr's you were a gift to us when we needed you the most. We are thankful every day for you and your love that you give. We love the people you are and the people you are raising your kids to be. We look forward to many more years of memories with you}

{2010 has been a year for the record books, and much more is headed our way, I can’t wait to see what’s next}

{Shop if you Dare}

2010-12-10T13:40:00.000-08:00

I love this time of year and especially love my favorite sport {or at least I think it should be} shopping but since we have had Michael it is more like being in the Iron Man race{not my idea of fun}.

Yesterday Michael and I were home and all of a sudden he sees a commercial for the mall, he started frantically saying “DRIVE” and doing the sign for it. I asked him “you want to drive?” he said “yes” then points to the commercial. I say “you want to go shopping?” he said in a sweet soft voice “yes”. I knew at that point I was facing a huge decision.

Michael along with the other myriad of things going on has sensory issues. Imagine yourself standing in the middle of the freeway during rush hour. It would be scary and quite overwhelming.

Knowing this about him and the “consequences” it could bring I tried to divert him to another subject, I say “do you want to color?” Mike says “NO!” not just a little no but a big NO. It is at this point I would give in and go or face an afternoon of “drive, drive, drive, drive, drive.”

So the process starts…
I have mastered getting ready start to finish shower, makeup, hair, all of it in 30 minutes or less {another sport in my opinion}
All the while Michael is saying “drive” and with his new found use of putting two words together {PERFECT MOMENTS}, he was saying “mom drive”. This I did not mind as it is a new milestone for him to put words together.
I finally got done with the marathon of getting ready, got him dressed, in the car and thought I might be able to just get away with driving not actually going in anywhere.

{Someone had other plans}

Wouldn’t you know being the genius that I am rather than choosing one of the thousands of rural routs I could have pleasantly driven as we live in beautiful Oregon, I choose to drive downtown. {Uggggg}.
Needless to say Michael saw the mall and the parking garage {he has an extreme fascination for parking garages} and the sign for “want” started rapidly happening from the backseat along with “ahh,ahh,ahh”.

My heart sunk down into the pit of my stomach. I was scared really if you want total honesty. Usually when we go into large public places Michael becomes very excited, and screaming is not out of the ordinary. {Picture the movie Rainman when Raymond and Charlie are in the bathroom running the water and Raymond freaks out over the hot water and Charlie has to calm him down} Yep that’s me and Mike. Along with the many {if looks could kill} stares I get from other adults.
I suffer from anxiety so when this starts to happen not only is Michael standing in the middle of a freeway during rush hour but I myself feel like I have joined him there.

So all of these past experiences are going through my mind as I’m driving and listening to “ahh,ahh,ahh” {scream} ahh,ahh{Mike starts biting his hands}. I decide at that moment to just go, I have things to get so we will just go in.

I didn't know it but I was about to be very surprised, first it took us like 10 minutes to get parking {how on a weekday in the middle of the afternoon I do not know} he held it together the WHOLE time!, we parked, and then walked into the sky bridge, I give Michael some loose change out of my purse and he happily put it into the Salvation Army bucket, the bell ringer thanked Mike, he did the sign for "your welcome"and we headed in. {I’m telling myself deep breaths Sharlene}.

Michael sees the elevator, I hear him say, “up” so, we went down as we were already up. I actually got the things I needed in the first store. We managed to have only one outburst {along with an adult death look}and one hand bite. I ask Michael “do you want to drive?” thinking he has had his fill of shopping, he says “NO” I then say “OK do you want to shop more?” “Yes” he says. {OK Lord this ones on you now I am working on borrowed time here}. So we move onto the next place, we ended up going to TWO more places, I got sushi and I even got to stop by the jeweler and get my wedding ring cleaned. {Blessings from above a perfect moment}.

I was soo pleased with his behavior, he was a different kid.

I realized then that it isn’t always going to be like standing in the middle of the freeway during rush hour. Over time it is going to be more like standing on the freeway but with only a couple cars driving by.
He will learn to get out of the way of traffic and learn to start directing the traffic himself

{in his mind}

{PERFECT MOMENTS!!!}

2010-12-09T08:41:00.001-08:00

Today started off VERY early, earlier than usual… FIVE am!
Usually, this is the sign of a rough day ahead. But, something is different today.
Things are calm and sweet.
Should I consider this the “calm before the storm”?

Michael is cozy on his big, huge pillow with his blankie that grandma made him on the living room floor. Al is wrapped in a blanket on the couch, an old movie with a very young Mickey Rooney is on TCM, and coffee is being enjoyed.

I love that THIS morning, our son is being very sweet as he grabs me around my shoulders, pulls me close to him to give him kisses.
I love that his giggle is so loud when; instead of a kiss I pucker my lips together and blow making a duck like noise against his lips, he rolls back giggling saying “mouth” as he points to his mouth. Music to my ears.

I LOVE THESE MOMENTS!

Then it happens! Another wonderful moment…Michael says “mom” while doing the sign for mom, then follows with the word “light” pointing to his dark bedroom, I say to him “You want your light on?” he says, “Yes”. Having a short attention span as any 4 year old does he then says “ooon”{balloon} as he is holding his balloon left from his Birthday and then points and says “teee{tree}” pointing to the Christmas tree…I say to him,” you want the balloon on the tree?” He says, “Yes” {followed with a huge smile}.
I then realize he is starting to put his words TOGETHER!

Our little man is starting to make word connections, to use them in tiny sentences!!!

It is moments like these that some times I finally get it. I call them my “ah ha” moments {I know, original} but, mine all the same. The very moment I realize I spend so much time and energy wondering what or when things are going to go to hell, rather than thanking the good Lord above for THIS moment, THESE moments.

MOMENTS OF PERFECTION!!!

If you truly think about it our lives are full of these perfect moments. The moment you pull into the grocery store parking lot and pull right into a parking space in front. The moment you hit all green lights going from one end of town to the other. The moment you are headed to the check out and there is a lane wide open with no one in front of you. The moment you give birth. The moment you meet your mate. The moment you step on the scale and are happy with what you see..many many moments of perfection..no matter how big or small they should all be looked at the same…PERFECT MOMENTS.

Will I sit and worry that it is all going to go to hell in about an hour? NO! I am going to choose to embrace these moments.
A series of perfect moments in the early hours of this morning.

Not to be taken for granted or discredited with worry of “what’s next”, but rather accepted for what they are…………

{PERFECT MOMENTS RIGHT NOW}

{The Rollercoaster}

2010-12-02T10:00:00.001-08:00

We have all been there at one time or another, on a roller coaster as we are pulled up the chain driven track of the very first hill and over the intercom we hear.
“Ladies and Gentlemen please stay seated and keep all hands and arms inside the ride at all times until it comes to a complete stop.”

We reach the top and excitedly we put our hands up, take a deep breath and prepare for the exciting ride that lies ahead.
As a mother with a child who has many autistic behaviors life is like riding a rollercoaster. Exciting and scary all rolled into one.
The other night we ventured out to wish our extended family a safe journey as they were moving away, we didn’t even get into the door before Michael was clinging onto his daddy like we were going to box him up and send him on the moving truck with them.
Like a roller coaster that you have never been on before you never know which way it’s going to turn. One minute you are holding your hands up in the air smiling, screaming out of excitement, enjoying the ride, and the very next minute sometimes very next second you are hitting a sharp turn on the track you didn’t expect and scared beyond words.
We try to keep things predictable “the same” we have our daily routines.We hit the floor running when we hear “HELP! WET!” knowing that our precious has decided to wake up and has soaked through his jammies and bedding in the night, we have our medicine routine and let me tell you we hate that part it’s always a fight. Then we have play time that usually only lasts for about an hour before we start going into the first scary downhill drop on the roller coaster ride we call our day. After that we have to lay him down bottle in hand and put up a sign “ride closed for repair” as our morning nap is needed.

Running errands is NOT an option, not unless I want to be so emotionally exhausted by the end that I have nothing left to give. Christmas this year at Grandma’s is not going to happen as Michael is so terrified of the dog that he screams when he even sees the street she lives on.We want to be able to go Christmas shopping together but we can’t because it is all way to much for little Michael so I resort to online shopping otherwise the car de-rails and it takes days to repair the ride.
Needless to say just like a rollercoaster just as soon as you hit a hard left or right, you have a calm moment even still you are anticipating the next sudden drop or hard left.
Don’t get me wrong, the rollercoaster isn’t always a scary thing. It also can be so utterly exciting.
For example, when we are driving around at night during the holiday season and all of a sudden you hear from the back seat in the most excited tone ever imaginable, not to mention a word!, an actual word we never thought we would hear come out of Michael’s mouth, “LIGHT!!!!!” So loud and so full of excitement you jump. Or, a commercial comes on for a toy and you hear “WHAT’S THAT? WHAT’S THAT?” with his little hands rapidly doing the sign for “WANT” indicating that he wants the item for Christmas.

In those moments you can see and hear the excitement so much that it takes over and you yourself become just as excited about the light or the toy as he does. You become ONE with the ride.
Just like a rollercoaster there is no middle ground you’re either excited or scared to death.

We are learning each day to love this life of the rollercoaster.

{The Telephone Game}

2010-11-04T10:19:00.000-07:00

Growing up I remember playing the game of telephone as we all sat in a circle in school. The statement that started out as “Mrs. Teacher is wearing a blue dress” somehow along the lines ended up being “Mrs. Teacher has a blue dog and he ate her dress”.

Information gets twisted and turned along the way to the end person.
I see this time and time again in my life. “So and so did this” or “Did you hear such and such?”
How easily an opinion is formed when we take information and make assumptions of our own rather than asking the source themselves.
This is so incredibly hurtful at times and also can be so out of this world hilarious when the twisted details ultimately end up coming back to the original party.

It always does, inevitably, someone along the telephone line makes an operator assisted call to the source of it all to ask what the true story is.

Once the truth is revealed it can either reveal how hurtful others who did not take the time to ask can be, as they sit back and talk about the source amongst themselves rather than asking the operator to help them make the clarifying call, or, it can provide a good laugh.
Either way, life is already so incredibly complicated, don’t you think?

Why do we sit back and listen to such nonsense and partake in creating our own story rather than going to the source directly?
Why take so much time and energy out of our daily lives to talk about other people or twist statements and stories making them what we assume they are rather than cutting to the chase and getting the truth?
Is true life really that boring? Are we that interested in proving “how awful” someone is, rather than giving them the benefit of the doubt?
Do we really think that highly of ourselves that we feel it is our right to create our own version of someone else’s intentions or life happenings?

I can be guilty of this to when all of a sudden someone is not texting me back right away; a friend removes themselves from face book. Or, maybe suddenly I find myself being avoided, or at least I think I am but, unless I open my mouth to find out and actually ask I am,

GUILTY~ GUILTY~ GUILTY.

Guilty of assumptions, Guilty of making my own version of someone else’s story, a story that is not mine to tell, but theirs. I would prefer to just ask. What harm will it do? Yes, the truth can hurt at times. But, it can also be very clarifying and freeing.

I recently read a statement that I find to be so profoundly true, it said…….

“Before you speak, ask yourself: Is it kind, is it true, is it necessary, does it improve upon the silence?"

{Walk in their shoes…}

2010-11-03T13:12:00.001-07:00

Having our son Michael has taught me so many things I can’t count them all.
One of them is compassion for people with disabilities.
Before he came along I was very ignorant and plain old mean hearted when it came to people who have disabilities.
Laughing at the boy with Down Syndrome who loves his Mickey Mouse gloves and Merlyn hat so much he walks all over town with them on, laughing at the people who walk down the street talking to them selves, and criticizing people for being “slower” than I am.
Using words like retard and gimp {Yuck!}
Looking back at my own behavior is so disappointing. I look at our son and my heart breaks to think I was so cruel before.
Now, I find myself having to hold back my hurtful words when people stare at us when we are out and he is throwing a fit, when people stare at him when we are pushing him around in his chair, when people snicker as he is trying to talk and the words are understood by me but not to them, or when a little old lady says “he’s a little big to be pushed around shouldn’t he be walking?”
Rather than lashing out at those people because they are ignorant, I need to turn the compassion around that I have learned to have for those with disabilities and have the same compassion for those who are ignorant. I need to be an example, an ambassador, and a teacher to those who otherwise don’t know any better. Show them that we are not to be made fun of, or felt sorry for, but rather understood and perhaps a little envied.
See, our family is special, we have our own club. We get to have our own language. We get to experience life in a whole different light than everyone else. We get to realize how special our abilities are. We get to love and trust each other unlike anything else in this life. We get to see the value in EVERYTHING.
So, next time you see someone who has a disability try talking to them, be a friend to them, try understanding them, rather than staring, pointing at them or being impatient with them.
We are part of a special club, a club like no other, you will never have more, joy, laughter, and love, we would love to let you in.

{Letter to our Farr Family..We Love you}

2010-10-29T11:04:00.000-07:00

Clifton & Carrie,

So I am feeling sorry for myself and feeling sad that you are moving on. I find myself wishing that none of it ever happened that the job wasn’t applied for, that the house wasn’t found.
I find myself scared to have someone else watch Michael for us. What if they don’t fall in love with him like you did? Then I realize…….
I am being selfish, yes I am sad but I need to be happy for your new beginnings. I need to be happy for your new found success.
You guys are our family; you have openly accepted our son into your lives unconditionally and made him one of your own.
Your children love him and teach him new things and are so patient with him, and you all have learned to understand him even when he doesn’t have a word for it.
Carrie, I will miss the picture messages from you during the day, pictures from a proud Momma not just the sitter. I will miss sweet little Reagan who started out calling me “Michael’s mom” to now “Shar” and her sweet little hugs and kisses. I will miss coming through the door and seeing CJ and Liam coming up to Michael to bump their little fists and not getting mad when Michael turns off their games. I will miss Baylee talking about how she took Michael for walks and showed him off to the neighbors and defends him when others speak ignorantly of those with disabilities. I will miss the excitement in your voice Carrie as you tell me about something new Michael did. I will miss hearing about Cliff having crawling races with Michael, playing peek a boo. I will miss the example that Blaec is to all of our little ones.
Michael & I love and adore you all.
I am so thankful to have an extra Mom and Dad and a bunch of brothers and sisters in Michael’s life and a new brother and sister and nieces and nephews in mine.
I hope that you love your new world, to start new. How exciting is that! I look forward to our trips to see you.
I miss you already you haven’t entirely left yet.
You are truly an amazing family, one I am proud to have in our lives.

1 Corinthians 13:4-7
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, and always perseveres.

You guys are my heart, and I know Michael’s to….Big kisses and Hugs

Shar, Al & Michael

{Put on your Oxygen Mask!!}

2010-10-28T08:43:00.000-07:00

Let’s set the scene…
It’s a quarter to 4 in the afternoon and your day started at 5:30 am, you are exhausted. You have been dealing with a very cranky 3 year old with a cold. You have just ended a busy work week and it is finally your weekend. All you want to do is NOTHING. But, you don’t because you are the grown up, the mommy, the wife. The washer and dryer is running, dinner is on the stove, the dishes are being put away , your folding the laundry in the laundry basket, cartoons are on the T.V that you hope are going to keep your 3 year old occupied but, they aren’t because he wants to be in the middle of it all, hacking and coughing because he has a cold, freaking out when his nose runs to the point that he is screaming if you don’t immediately, I MEAN IMMEDIATELY have a tissue in hand to wipe. You can’t seem to move fast enough for it all.
All of a sudden, all the sounds seem to merge into one very loud sound all at once, you can hear it all getting louder and louder, machines running, pots of food are boiling, silverware is clinking, and your child is screaming. The room starts to spin…
STOP!!! THE CABIN IS LOOSING PRESSURE!
Put your oxygen mask on mom!!
“Should the cabin experience sudden pressure loss, stay calm and listen for instructions from the cabin crew. Oxygen masks will drop down from above your seat. Place the mask over your mouth and nose, like this. Pull the strap to tighten it. If you are traveling with children, make sure that your own mask is on first before helping your children.”
I never really understood the pre-flight directions from the airline attendant before having a child. I mean, wouldn’t you instinctively want to put it on your child first….Well that’s what you would want to do but, the fact of the matter is, if you are in that situation you may pass out before completing the task then,your both goners.

In my daily life I think of those instructions often. Taking care of the home, the kids, working, all becomes a little overwhelming, the cabin pressure drops and you find yourself in a cabin emergency. God then drops down the oxygen mask and tells you “Put your oxygen mask on mom and listen to me!!”
That’s when you step back and walk away from it all. Placing your child in a safe place,handing them a tissue, turning down the dinner on the stove so it doesn’t over boil, putting the towels in the laundry basket, and setting them aside for later, turning down the cartoons. Then retreating into your bedroom, bathroom, and garage, what ever place in your home you can escape to go breathe deeply the oxygen provided through your mask. You breathe in and out, in and out. Saying prayers and listening to instructions provided. You say “Oh God! Give me the strength to get through this cabin emergency"and he does.

You find yourself calm,collected, you can breathe, and you can then go back to your noisy {now it doesn’t seem so noisy}, busy activities of the afternoon. You get it all done without casualties.
When life gets noisy, busy, and overwhelming.

Step back and put on your oxygen mask.

{I’ll take the 70’s please…}

2010-10-20T09:59:00.000-07:00

If you walk into my home you will walk into a time warp. A sea of pea green, gold tones, burnt orange, glass table grapes, wooden fruit, swag lamps, and gaudy 1970’s oil paintings.
Oddly as it may sound I find peace and tranquility in it all. A sense of being home.
I can remember as a small child going to my Grandma Marlene’s house and seeing the gold veined mirror tiles on the wall.
It was home.
A place full of love, love, and more love. I remember playing hide and seek behind the vinyl tufted bar, and skinny dipping in the pool. I remember how she would always where the most uncomfortable pointy toe heals with short shorts, get her hair done once a week, and pick up after the dogs in her panty hose. She always had a variety of ice cream in the freezer for breakfast, lunch, and dinner.
This woman was beautiful; and unique in her own way. I love and miss her so very much. I never went without feeling a sense of belonging, and being so completely loved.
I was her little angel.
As I have become more aware lately. I find myself thinking about her and how my relationship with God is similar.
My relationship with him is unique, not the same as the person next to me. It’s personal. I can be myself, and be so completely loved, and reassured that I have a place in this world, he is my 1970’s.
I have a problem with main stream Christianity, cookie cutter, put on the Sunday best, a smile, and pray in a format as if reading from a script.
Just be yourself! Scars and all.
Do we talk to the people we love like “Oh dearest friend I come before you today .......” NO! We say, “Hey I have something to talk about.” Just be real. He already knows what’s on our mind before it comes out of our mouths.
So why be fake?
I am thankful for my relationship with him. I can go crying to him and say “Hey I had a bad day today I need to talk about it.” Or, “That was so cool that you did____.”
He knows our heart of hearts, He isn’t an idiot, and he doesn’t need us to pray in format.
He wants us to feel like we are home, to feel like we belong, he wants us to embrace life, where panty hose while doing yard work, eat ice cream for breakfast, and be unique.
BE REAL EMBRACE YOUR 1970’S