{Precious Gifts, Our Year in Review}

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}

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!!!}

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}

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}

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…}

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}

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!!}

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…}

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

{Find the humor...It won’t kill you}

This one is dedicated to all my friends in the SBH group.

Today I have been writing back and forth with other parents in an online group we belong to. We all share a common thread. Our children are all very special, they all have brain abnormalities.
One of the common things we all share with this abnormality is autistic behaviors. Over time I have mentioned the difficulty of the behaviors but, I have not mentioned the humor that can come along with it.
Ok, so I am sure you all have seen Rain man. I know those of you who are not in our position may think this a cruel analogy but it rings so true. In fact I love that movie and its very existence so much because it helps me step back and find the humor in it all.

Me “Michael do you want a sandwich?”
Mike “light”
Me “Michael do you need a diaper?”
Mike “light”

Me “Michael do you" …. Me interrupted..Mike “light”

Everything in Michael’s world revolves around a light right now.
When ever he hears an ambulance he yells “light” because they put a light on his finger to monitor his heart in the hospital. When we are watching Grey’s Anatomy everyone on the show needs a light.

Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light

Sometimes I find myself breaking out in song “There’s a light…over at the Frankenstein place” from the Rocky Horror Picture Show. Just because I have to interact with the word so it doesn’t drive me crazy.
I suppose I could sing “this little light of mine” but I find the other more amusing.
Moral of this is, embrace the difference, play with the words, and laugh at it, Its ok go ahead and laugh, it is funny at times and this life is far to short for us to get irritated by all the little tics that come along with our differences.

{Two ships “Hang on babe”}

Today I find myself sad. Not because there is anything major happening but because I find it so hard to go back to work.
Life before Michael was predictable. My husband and I had the ability to have our work schedules be the same so that we could have time together. Finding out that we were going to have a baby changed all that. Having a baby with special needs made it necessary to work opposite days to have Michael at home with one of us as much as we could.
Now my husband works during the week and I work the weekends. I dearly miss the time we used to have. We still do have family time in the evening and we make the most of it. By the time family time is over, dinner made, baths done, bed time battles one, toys picked up, we are so exhausted there is not much left to give each other.
We keep telling ourselves “just hang on babe when Michael starts going to school full time we can get back on track.” Have a “normal” life again.

I fear at times we will never have a “normal” life again.

I am so thankful that my husband and I had a good base prior to Michael coming along. Currently the divorce rate among couples who have children with special needs is in the 90th percentile. We did separate for a period of time but within a couple months realized we loved each other to much to let these challenges ruin a good thing.

Al, you are my husband, my safe place, my best friend, my love, and we together are great. We have over come many obstacles in this life and we are not done yet. Life with you has never been a boring journey. Our life has been full of hills and valleys. Right now we are in a valley but we will one day reach the top of the hill.

I love you my man, my husband, my best friend.

I will hang on

{Playing should be easy…}

I was playing Chef with Michael this morning taking turns back and forth, stirring a non existent substance in a bowl, and taking slurps off the wooden spoon saying “ummmm.” When, suddenly it dawned on me that I can play now.

My struggle to play started many years ago; I was married to my first husband Shawn who had twins a boy and a girl. We had recently been given custody of them and I suddenly went from being a grown up to having to interact and play.
I had such anxiety over playing. I found it uncomfortable to pretend, make funny voices, going vroom with the cars. Anything that involved play or pretending was beyond what I could handle. In fact, I actually sought out help from a child physiologist to express these anxious feelings.

Being an only child my life was surrounded with lots of love, I was very spoiled. But, no one played with me. I learned at a very young age how to show love, communicate, and become the world’s greatest shopper. Everywhere I turned I was with a bunch of adults. Yes, they loved me but they all had their own agendas and did not take the time to play. Play was usually by myself, in my own world.

After my first marriage ended I remarried and was blessed to have another child in my life. Who again liked to play, pretend, sing, act silly all the things a normal child would want to do. I just couldn’t do it. I just could not let my guard down, let loose, not worry about making a fool of myself and play. Al would let the kids get temper paints out, huge rolls of paper, spread them out onto the kitchen floor, strip down the kids and let them go at it. No hold bar!! Paint as far as the eye could see!! I would get so freaked out by it all, the mess!! I was also secretly jealous I wanted so deeply to be able to just play. I would alienate myself by not interacting.

I was good at loving, nurturing and guiding, but not encouraging play.

It wasn’t until I had Michael that I learned, and actually it was a process. When he was an infant I thought, “I have this mommy thing down.” “This is right up my alley.” But of course it was because all he needed was someone to care for him and love on him. Then he started to interact, for me this came much later due to Michael’s delays and I have to think that that was in God’s great plan of it all. He knew that the delay would allow me the time to slowly get used to the water.

When Michael started to interact first I would play just when it was me and him all alone. I was still not comfortable with making silly noises, signing ridiculous songs in front of my husband. As time went by I could play with my whole family. Now, I don’t care who is around. Half the time when we are out in public you will find me racing his wheel chair through the store yelling “you’re careening out of controooleeee!!!” as I drive him around recklessly, vroom, vroom, singing the songs of the day with him.

I am thankful for play. I am thankful that I now can enjoy it, embrace it, and not miss out on such a huge part of life.

ACT SILLY, DRESS UP, MAKE SILLY FACES, SING SILLY SONGS, LET THEM BE MESSY …………And PLAY PLAY PLAY!!!

{Who signed me up for this??}

So today has been a very thought filled day.

It started off very early 15 till 6 with Michael saying “help”, “help” because he wanted to get out of bed.
Up and away we go to start a new day, right? I suppose I should have maybe gotten back into bed and crawled out the other side. My attitude sucked, I was just plain mad that I was up. I was mad that I had to go attend to my child rather than doing what I wanted to do which was to go make coffee.

I find myself asking God “Why did you let this happen?” “Why did you let me have a child that isn’t “normal?” “Women do drugs and other bad things while pregnant and have “normal” babies, I didn’t even take Tylenol and you give me this?”

Each day I wake up have to check my calendar. What doctor do we have to see this week?
Could it be Michael’s physical therapist, occupational therapist, neurologist, gastro specialist, psycho therapist, behavior specialist, developmental specialist, and sleep clinician?….Ugg with the specialists.
I just want “normal”, I just want to wake up and have a boy who is happy to be awake. I just want a boy, who will talk so much that I can’t stand it any more, rather than the constant whining & screaming.
I just want a boy who is going to run away from me in the grocery store and I have to go chase him down.
Not a boy who I have to constantly play charades with to guess what he is trying to say, or have to lift all the time and put in a wheel chair because he doesn’t walk.
I want a boy that other mom’s will want to come and have play dates, not be afraid of who Michael is.

Before you all gasp and start writing hate mail to me…WAIT!

The brass tacks of it all are it is hard to raise a child who otherwise does not have a disability and it is ten times harder to raise one who does.
I am a real mom who gets tired and wants so desperately to sometimes be selfish. Do my own thing.

The answer to my own questions of “why me?” is.
Michael is a gift.
Michael fought tooth and nail to be here on this earth almost loosing him at 12 weeks, I laid my pregnant self down on the couch until he was 27weeks. Michael chose me to be his mother. God chose to let Michael have me as his mother for a reason. When I was on bed rest with him I cried out to God to please show me a promise, please reassure me that my baby{did not know if a boy or a girl yet} would be ok.
HE gave me this…no joke, it hit me upside the head and I love it when that happens. Luke 1:13, 14 But the angel said to him, “Do not be afraid, Zacharias, for your prayer is heard; and your wife Elizabeth will bear you a son, and you shall call his name John. And you will have joy and gladness, and many will rejoice at his birth.”
I sometimes feel sorry for myself when in reality I should be thanking the good Lord above that he has ALLOWED me to raise such a gift, as Michael is.
A child so special that raising him would open my eyes to the needs of others, not just myself. Open my eyes to people that were dealt life challenges that need patience, compassion and someone to see them as a person not someone who is “not normal.” Open my eyes to the corruption of this world and become a voice for all of them when they can’t speak on their own behalf.
I was given Michael so that I could not take even the tiniest things for granted, Waiving bye-bye, using signs to talk to me, sitting up on his own, holding his own bottle, scooting around the house on his little butt. Being so completely dependant on me to love him and him love me back. That is why I was given this little person.

Your right Michael and others like him are not “normal” they are AMAZING! They are far stronger than the average Joe. They should not be looked at like a burden or to be felt sorry for. They should be looked at and admired for their courage, strength and purity of heart.
So when I start to get mad, I need to put myself in check….Sharlene God truly thinks the world of you, he gave you this wonderful gift because you were the perfect person for the job.

Thank you God, for letting me make a big deal and celebrate the milestones that are achieved and not taken for granted.

Thank you God, for letting me love and be loved by so many new and wonderful people who deserve to not be dismissed.

Thank you God, for teaching me compassion for others.

Thank you God, for the beautiful boy you let me call my son.

I love you my son, my heart, forever my little boy.

{Control is killing me and I’m pretty sure my family to}

Some people would call me a good housekeeper, creative financier, good mother, wife. I suppose I am good at all those things but, the truth is I’m slowly killing myself.
I do between 3-5 loads of laundry every day, not because they are big loads and we are close to having nothing to wear, but because I can’t sit and know there is laundry to be done.
Every day I have to pick up after Michael SEVERAL times a day, why? Because, I can’t stand to see the toys all over the house.
Every day I have to go onto my online bank account, balance the checkbook, and then refer to our budget that I painstakingly have pre-planed out a year in advance.
Every Friday I have to figure out what I am going to wear for work, lay it out in order of the days they will be worn and according to what google says the weather will be Sat, Sun, Mon, and Tue.

I micro manage everything!!!!

“OOIEEE!, Moyra {one of many nick names, don’t ask}” Al says all the time, as I then rebuttal with “well, if you take something off put it in the laundry”, “if you use the bank card give me a receipt”, “why don’t you clean the sink out after you are done with it?”, before leaving the house “Al, to you have your wallet, glasses, keys, phone”. Oh and the phone “What’s the point in having a cell if you don’t answer it?” I say.
I also hear a lot, “just sit down Joan {Joan Crawford from Mommy Dearest, another nick name I have earned myself} you have been back and forth to the laundry room 10 times tonight”.
I sometimes tell myself that I am so controlling because I have no control over the situation with Michael’s disability. The truth is {wow this truth stuff is not fun}, I have always been like this.
Is it environmentally instilled in me? My mother is the same way, she will say she is not but I can remember when I was a teenager vacuuming and if she could not see the vacuum lines overlap I would have to do it again.

Or, am I just making excuses for being like this? I think it’s the later.
I am not spontaneous; I have to plan every detail. I don’t relinquish the household managerial duties because, “no one can do it like I can”
Some how, Al made it through his adult life before we got married without me.
I’m truly amazed that he does not go off the deep end and go postal on me. This man truly deserves an award for putting up with the most nagging in this life. I am pretty sure after a while I can only imagine I start sounding like the teacher from The Peanuts cartoon "wah wa wa wah wah."

This thing, this problem has been the root to destroying my relationship with the Lord.

“Let go and let God”, so cliche but so true.

“Why Sharlene don’t you trust me?” I can hear him say, and yes it nags at me ALL the time. How many times do I have to be disciplined by my Father above to finally realize that I am not in control? How many gifts does he have to hit me over the head with, so obvious they are from him to get me to see he wants to help and bless me?
Things happen that bring me to my knees in prayer, then life gets back on track, I take all the credit, and start to control it myself again. Over and over and over again this happens. It’s like telling Michael, “don’t bang your head on the wall it is going to hurt you” but he goes back and continuously does it.
How many times am I going to bang my head on the wall before I get the point? I am hurting myself and those around me.
Envy is a horrible thing, something we are taught not to do. But, I envy those who seem to be able to have faith, “let go and let God”.
I would’t have to be envious if I would just let go. Why can’t I? Why isn’t it just as simple as saying “I can’t do this Lord please HELP me, your will be done”. Some would say it IS that simple but it’s not for me. I just hope I can WAKE UP before it’s too late, I hope one day I can "let go and let God".

{Maddy.....beautiful through and through}

Sister…
I got off the phone with you this morning and I came to a realization. I don’t want you to grow up. I mean I do but I don’t.
Life with you for me started out when you were just 3 years old. When I was first introduced to you, you were in the tub and after I said hello to you your immediate response was “look what I can do” as you dived down under the water. You would go around dancing and singing, you were always smiling so oblivious to the stresses and the complexity of this world around.
You wanted to spend all your time with your family we were your world. Grandma, Grandpa, your mom, dad and myself we could put a bubble around you and only allow what we wanted into your world. Your opinion was our opinion; the things you liked were what we let into your little protected world. We could tell you anything and you did not ever question it.

You have accomplished many things in this life so far.You have mastered playing the piano, you have a beautiful voice in which I know you got from your mama Mindy, and you started your school career with great zeal looking forward every day for the next school day. You still exceed all our expectations in school; you have high standards for your work and strive to be the best. You are so self motivated.
When you were 4 you announced that you wanted to be a veterinarian. You have not lost focus; you now wish to be a doctor. You have not decided what kind of doctor yet, you have gone from pediatric oncology, plastic surgery, to your current choice OBGYN. Maddy you will make a wonderful doctor no matter what kind you choose to be.
You now have a social life; this is the hardest I think, speaking for myself. No more are we your entire world and it is hard for me to wrap my head around that. You now want to go to football games, dances, go to the mall with your friends. Our gut instinct is to fight it, to say No when you want to do things other than what we have planned in our minds for you. Just know Maddy that No doesn't always mean No, sometimes it means we are uncomfortable with you growing up, us trying to avoid the inevitable.
Usually after we have had time to think about things you are granted your wish, you are logical, you are responsible, you will sit down with us and weigh out all the options, we try to give you the space during our discussions to come up with your own answer. You acknowledge that sometimes you have to make hard decisions that you know are right but, not easy.

This year has been an adjustment to all of us, you included. You decided of your own free will to go to a different high school than the other kids you have gone to school with from the beginning, because it benefits your educational growth and life plan.
We are proud of the girl you are. We look forward to the woman you will become. We just have to step back, take a deep breath and know that deep down you are still the little girl who thinks we all are your world, but you have to step out and become a person of your own.
I know I have said a lot, to sum it all up; we love you, respect you, and understand you have to spread your wings. Although it may be uncomfortable for us, please be patient as we are doing the best we can to understand that we are not loosing our little girl we are gaining a beautiful young woman who in our hearts will ALWAYS be our little girl.
We love you and are so very proud of you.

{The big 4 is coming!}

Our Sweetest Michael,
Next month you will be 4 years old. I can’t believe how time has passed so quickly.
You are such a big boy. You are almost 4 feet tall already and 62 lbs, I’m convinced you are secretly planning on being a linebacker preferably with a helmet but with as much as you like to bang your head it may not be necessary.
This year I need to give you some credit son, I will say I get so wrapped up into what your not doing that I loose focus allot of the time on what you ARE doing. This year you have learned to sign mommy and daddy. With in the last 3 weeks you can say toe, nose, eyes, ear, up, starting to say sis, and MOM {my personal favorite}.
You are showing signs of being quite the artist, you love to color, and even though we have discovered that you are a “lefty” {big sigh} it’s all good. I love it that you bring home your great works of art from school that YOU did all by yourself. They are perfectly imperfect.
You have made a bunch of new friends who love you so very much. You are starting to show some interest in crawling rather than scooting.
Son, you are so amazing, you prove to us all each day that no one not even the doctors can predict how you’re going to progress. Your little brain is a mystery and you show us all the time that it is truly capable of compensating for the parts that didn’t develop.
This year you have had many challenges with being so angry, we have been working with the doctors to find the right medications to help ease your behaviors but not stop the progress being made. Mommy fights for you all the time. I will not stop pushing for what I know it right for you. Your doctors, therapists, and teachers met their match with me son.
I am thankful we have had another seizure free year! Each day that passes I am thankful that we have not had to endure that part of the disability you have been dealt.
You went with mommy to protest and stand up for your rights at the state capital in July and we had a small but significant victory. We will be out there again in February son, we will fight TOGETHER! You will grow up to voice your opinion; you will grow to know that you are valuable; you will grow to know YOU CAN DO ANYTHING YOU WANT TO DO. Just like mommy has to fight to not fall down and feel sorry for the situation we have been dealt and when I do succumb to it to get back up again. You will learn to do the same.
This world is not a kind place, and it is our job to make sure you are ready. I will always be there to love you, hug you, kiss you {even when you don’t want me to}; just as well I will always be there to push you.
I can’t wait to see what year 4-5 brings us. I have a sneaky suspicion it is going to be a big year for you.
We love you our little Michael and are so very proud of you.

{The Farr's Summer 2010}

Michael this summer you have made some new friends, Cj, Liam, Reagan, Baylee, Blaec, and the head of the brood their mom Carrie Farr.

You got to go to the zoo, play in the pool, Cj was patient and showed you how to play bingo. The girls treated you like their own little baby, the boys didn't get mad when you would turn off their video games, they would work with you on walking, counting, and played with you like any other kid would play. You have grown so attached to them. I can see the twinkle in your eye when you hear that you are going over there to play.

They have opened their home to you and treated you as one of their own. People like this are rare son. Blessings from above. Not everyone gets you or understands you. We do, They do.
Son you will come across many people in you life time and when you meet people like the Farr's you are blessed.
Son, you will someday soon have to meet new friends. You are lovable and a big personality. You will miss them as I will to. They are more than just friends in my book. They were sent to us when we needed them the most from God himself.
WE HAVE BEEN BLESSED TO HAVE SHARED IN A PART OF THEIR LIFE.
Farr family we love you!!!!

{Victory Achieved today!!!}

Some of the services that the Governor wanted to eliminate for children and adults with disabilities were restored today. The fight is not over but for now we have achieved a small victory.

Today Michael and I went to the E-Board meeting where the Senator's voted to keep several services for many people Michael included. It was nice to have them see Michael's little face as a representative of one of the children the cuts would affect. Michael got to meet Senator Jackie Winters who had allot to say about saving our services to the board.

Some of the services are back in place until March of 2011 and some until June 2011.

Guaranteed Michael and I will be out there in Feb doing another Rally as they will be in session during this time. We are not done fighting for our rights and the rights of so many other individuals who have disabilities.

Restorations specific to developmental disabilities include:
Medicaid Personal Care 20 through June 2011
In-Home Supports for Children / Long Term Care through June 2011
Case Management for Children through February 2011
Targeted Case Management in counties and brokerages through February 2011
DD Family Support Program through February 2011
Reductions that were not restored include:
Reduce county DD Program and brokerage administration by 10%
Eliminate county and brokerage quality assurance staff
Reduce comprehensive services rates by 6%
Reduce DD special projects and training
Reduce DD crisis diversion
Reduce county Regional Programs by 10%
Reduce housing extended maintenance

Article by Jeff Barnard with the Associated Press

http://www.canadianbusiness.com/markets/market_news/article.jsp?content=D9H3GIBO0&page=1

{Contact your Senator!!!}

My name is Michael Allen Curnow,
I am 3 years old almost 4. My parents Sharlene and Allen waited al long time for me to come. When I was born everything seemed normal. When I was 6 months old they realized I was not hitting all the milestones. Through much searching and testing I was diagnosed with Bilateral Periventricular Nodule Heterotopia.
This is a rare brain defect. I currently understand all the world around me but my body will not work with me. I can not speak or walk and I have a high level of behavior problems because I get so mad that I understand everything but I can not say what I want.
I am in ECSE services for my school where my teacher and therapists work with me to help me so I can learn like other kids. I need a lot of help to learn speech, sign language, daily activities like eating with a spoon, drinking from a cup. They also help me because my behavior and needs are a lot like another child with Autism I have to have learn how to transition and deal with stimulating tasks.
My mommy also relies heavily on our case worker through DD services. She has helps my mommy find resources they qualify for since we don’t qualify for Social Security or OHP for help. It is hard for my family because they do not make a lot of money but it takes a lot to raise me.
My mommy and daddy need to take breaks sometimes because I can get very mad and it is getting hard to move me around. Respite services can help my mommy and daddy take some time they need sometimes to do other things they need to be able to do to make sure we are all healthy.
I don’t know what my future is going to be like. I will hopefully be able to keep the help and teachers in my school so I get a chance at a good education just like the other kids that everyone calls “normal”.
I beg you to reconsider these horrible cuts to our services. Many of my mommies friends have other great kids like me and some of them including my mommy and daddy have sometimes been in a crisis when all they had was to turn to our DD worker to help us find someone to come to our house and help us deal with our frustrations and show me how to behave.
I am my normal, I am Michael Curnow, I am a person who did not choose to be born with this challenge, and I deserve to have the services I need to grow up to be as independent and educated as I can be. I am not to be thrown away or discarded, and my family deserves the support to help them understand me and be able to talk to me and me with them just like what you all call the “normal” kids.

Sincerely,
Michael Allen Curnow
Age 3 almost 4

{WE WILL FIGHT!!}

Sweetest son...Mommy is fighting for you. I don't understand this world we live in, so cruel sometimes that when things get though they immediately think to remove services from you and others who face a challenging life like you.
I am fighting to make sure you have all the same opportunities as the next person. You are special, bright, and deserve a fighting chance. This world is so money focused; we have found that only the super wealthy can get all the services medically they need ALL THE “LATEST” technology. Everything from therapy to special equipment can be a challenge to get for you as we make just over the limit to qualify for help. The cost of raising you has been more than we bargained for and believe me YOU ARE WORTH IT ALL!
In the 50's children like you were labeled Mongoloids and not allowed to attend public school, families were forced to either deal with the situation in the privacy of their own home or they would put their children in institutions they were horrible places medicating to suppress behaviors and not teaching children how to gain their own independence. Some people thought of them to be temporary solutions what the reality was, once checked in most did not get to leave.
My son you will NEVER receive less than our love and support to teach you how to be as independent as you can be. There are many people in this world who achieve much regardless of the disability they may have. You are strong, you are a fighter and so are we. We will not sit back and let life rail road you. You my sweat son will stand out in the crowd. YOU ARE WORTH FIGHTING FOR..WE LOVE YOU!!

{Write to your local Legislator}

Dearest Friends,
Currently there is a budget cut proposal that will affect the services our families and children receive.

In response to the budget shortfall, the Governor's Reduction Order has included the reduction or elimination of most services provided to children with developmental disabilities. The Order includes the elimination of all family support, elimination of Long term support for Children with Developmental Disabilities, elimination of PC20 Services, reduction in foster care, residential programs, proctor care, and raising case management ratios to 1 case manager to every 300 children.

The follow is a list of important contacts. I encourage you to send your stories to each of them so they can realize how utterly valuable these services are to each of us and the affects it will have if they are taken away or reduced.

Kathryn Weit
Kweit@ocdd.org or 540 24th Pl NE, Salem, 97301

To find Legislators in your area:
http://www.leg.state.or.us/findlegsltr/

Governor Kulongoski160 State Capitol900 Court StreetSalem, Oregon 97301-4047

Resource for you:
GEM Children’s Foundation
http://www.gemchildren.org/
Phone: (503) 409-9502

{Official protest notice against Budget cuts on Services to families with children who have disabilities}

ATTENTION EVERYONE!!! My name is Sharlene Curnow THIS IS VERY IMPORTANT TO ME AND I HOPE TO ALL OF YOU
I have just learned that legislators are going to be putting forward a proposal for budget cuts. This proposal, if accepted, will call for thereduction or elimination of most services provided to children with developmental disabilities.

Impact of Service Reductions on Families with Children experiencing Developmental DisabilitiesIn response to the budget shortfall, the Governor's Reduction Order has included the reduction or elimination of most services provided to children with developmental disabilities. The Order includes the elimination of all family support, elimination of Long term support for Children with Developmental Disabilities, elimination of PC20 Services, reduction in foster care, residential programs, proctor care, and raising case management ratios to 1 case manager to every 300 children.
The following link is the break down of the proposed cuts.

http://www.oregon.gov/DAS/BAM/Allot_Reduction_Pages/DHS_SeniorsPeopleWithDisabilities.pdf

This will be a peaceful civil protest, anything less would discredit us as a united front fighting for the rights of our children.

Location: Capital steps in front of the Capital building

Date: Wednesday, July 7, 2010

Time:9:00am to 11:00am

Be creative bring your own sign, a 3'x6' Banner will be displayed that says..OUR CHILDREN ARE NOT EXPENDABLE STOP SPECIAL SERVICES BUDGET CUTS.

Rules of conduct:
1. you can not prevent or block any person entering or leaving the capital building
2. you can not prevent traffic from moving
3. no littering
4. no loud devises that can be heard inside the building
5. no alcoholic beverages
6. no candles unless you have a drip catch around it
7. no physical contact with anyone

These are the most important of the rules that were provided to me today. It is important that we adhere to ALL of them as we want to make a statement that will stick in the minds of those who walk by.
IF ANYONE IS OUT OF BOUNDS AND GETS OUT OF CONTROL THEY WILL BE ASKED NICELY TO REMOVE THEMSELVES FROM THE EVENT.

I have contacted Channel 12,2 to see if they would be willing to do a story on us, as I feel we need to make this issue as public as possible. Other radio stations and news channels will be contacted prior to the event.
There will be flyers to pass out with information on various people to write as well to dispute these changes.

If you are the parent of a child with disabilities, or have a family member not just a child with disabilities please I encourage you to take a stand for their rights. Spread the word!!

I ask that if you are interested in attending you notify me no later than Friday July 1st, I have been asked by the capital to provide them an estimated head count.

My email address is: acurnow4@comcast.net

Thank you,
Sharlene M Curnow
Mother of Michael Curnow age 3 PVNH

{Love is..Chicken and an Onion}

Perhaps the best comic ever created in my opinion, Love is...., so simple these little tid bits in the Sunday paper provide us with cute little things to cut out and put on our refrigerators, mail to the ones we love, keep in a scrap book, or just read and throw away.

Love is... it truly is simple, people say it's complicated. How so? it is what it is, life is the complicated part not the love.

Al you have to be one of the most giving , loving men on the planet. So selfless always making sure your family has what they need before yourself.

Love is...

your odd sense of humor,smile from across the room,hand on my lower back in the grocery, your strong hugs,words telling me its going to be OK, knowing what I am going to say before I say it, spooning with me, calling me on your breaks, tolerating how bossy I am,crying with me,telling the truth even when it hurts,coffee and cigarettes in the morning,being my logic,hearing you sing in the kitchen while your doing dishes,bathing our son at night,changing my surgery dressings,getting security called on you for making sure I get the right care in the ER,camping out in the woods because we had no home,meeting in bed,sleeping on the beach,the lack of conditions you put on it,reading the Sunday paper together,sticking up for me even when I hurt you, your forgiveness, how much you love and miss your mom, not making fun of me when I pronounce a word like it looks, listening to me always, knowing the secrets no one else knows.....you my love are the reason why I am the person I am today.

Who knew that 17 years ago we would be close to celebrating our 10Th anniversary this year, who knew that we would make it through some of the most difficult things a person could go through, who knew you would still love me the way that you do...as you call it it is KISMET, FATE...meant to be not complicated, love in it's purest form. The ability to love a person so much without limits, restrictions, expectations...

You my love are a true man, a man with everything to offer, the whole package, the whole enchilada. You can do anything from be totally transparent to guarding your family with your life.

You are the reason why I am not worried if Maddy will find a good mate in life, you are why I am not worried if Michael will grow up to respect women. You are my soul mate, my forever love, my rock...I love you, words so simple, but with no real definition if its true.

Love is our favorite song...by Kacey Crowley..

We're Kind of Perfect..

Why don't you talk about it,I know there's something on your mind.Well you go on and get a cigarette,I'll be waiting outside.The last few years have been much harder,Than we ever thought they'd be.I know you hate it when I say I'm sorry,But I'm sorry. There was never a point in our love,That I didn't love you...Not a point in our love.I always did, I always will, I always do, love you still,I always would, how could I not?Just look at us baby,We're kind of perfect. Well sometimes I get all wrapped up,Cause I don't know who to be.But you know when to be my security blanket, and when to uncover me.So let's just sit out on the back porch,And unravel everything.Someday these will be our old days, let's make them worth remembering. There was never a point in our love,That I didn't love you...Not a point in our love.I always did, I always will, I always do, love you still,I always would, how could I not?Just look at us baby,We're kind of perfect. Never planned on loving somebody so much...But I've always had pretty good luck, baby. I always did, I always will, I always do, love you still,I always would, how could I not?Just look at us baby,We're kind of perfect.

{The Story of SHMILY}

S.H.M.I.L.Y ...See How Much I Love You!!

SHMILY{pronounced Shimlie} started his life in our family about 9 years ago. Al and I read an article in the news paper about a couple who had been married for like 40 years the husband and wife would go around the house and write notes simply saying SHMILY on them in odd places like in the middle of a toilet paper roll, in the flour canister, all sorts of places that when the other one would come across it they would be reminded how much the other one loved them. We loved the Idea so much that we decided to put a spin on it. Being the odd duck that my husband can be he wrote it on a small baby doll and we would start to place SHMILY in weird places so we could each find it and remember our deep love for one another. I would find him under the covers so when I went to go to bed I would find him, hanging from a doorway, sitting in my makeup drawer.

Years later this has become very important as our challenges with Michael are very overwhelming at times. I am writing this now because the last week has been extraordinarily difficult for us.

Michael..we love you son but you have been so exhausting lately, we are grateful for the Yeses and No's you can tell us but we wish you could tell us more as to why you are so angry these days. You have started to bite your arms and hands, hitting yourself, and banging your head randomly or when you don't get your way again and this is so utterly disturbing to us. We can see that you are not injuring yourself that it is superficial but it still makes it hard to watch. You are also starting to wake up angry in the night time again.

Son, we wish we could take it all away, what ever it is. It seems you go through this about every 6 weeks its very cyclic. We wish that life was easy for you because we hate seeing you so upset and we are tired from it. We hate that each day this last week all we can look forward to is for your bed time that we will finally get some time of silence as your fit throwing has been lasting all day unless you are napping, we get lucky and find a program on T.V. you like, or someone stops by to visit us and you put your best foot forward to show off. We get on the floor and play with you and you get mad and start throwing your toys across the room, We try to get close to you and love on you and you pull my hair and try to scratch my face. Son we love you more than words can say. We want more than anything for you to be happy. We know that your not going to be happy all the time, We know that you are still little and you will outgrow this stage at least We pray you will. We are hanging on as our love for you keeps us going. You don't see us when we meet in the kitchen and all we can do is hug each other as we both start to cry out of sadness,exhaustion and a feeling of hopelessness, you don't see how we have to take turns to be with you so that we can cope with this insane behavior, you don't see that we feel helpless when you attack me physically when you are in the heat of the moment, you don't see the utter sadness when we have to seek out professional help to find ways to protect ourselves and help you learn to self sooth and cope with your anger. You are so strong and you hurt me. We know you aren't a bad boy, we know that you are not psycho, we know you are very frustrated but it still hurts. Its still hard to understand sometimes, why you can be such an angel for everyone else yet you act out with us. It feels never ending, it feels like you hate us, it feels hopeless at times. I get scared to see daddy leave for work knowing that I am going to be left alone to make it through the day with your anger and frustration. We pray this cycle is almost over, we pray that its a short one so we can have the sweet boy back that we know you really are, we pray that these outbursts start to lessen as you get older and mature. We are thankful that this usually only lasts for a couple weeks then we have at least a good few weeks of our sweet boy. We love you son, we are hanging on, we hope that you can SHMILY.

{You are AMAZING!!}

You are so amazing our little Michael! Yesterday while we were celebrating Sister's Birthday, all by yourself you crawled and then you copied Grandpa and did it a second time. We are so over the moon excited for you to do this. I know this life so far has not been an easy one for you, we can see how you look at the other kids when we go to the park who are running around playing. Sometimes it seems like you don't want to do something until you know your going to do it right the first time. When you first started to get around the house you would scoot around head first on your back everywhere, then when that got to hard you sat up and scooted on your rear. Now my son I can see you struggle to get around on your rear so I know you are looking for the next way to get around. You are a thinker, a planner, and I know you want to succeed and you will in due time. You have gone against the odds from the time you were in my tummy and you will continue to prove to everyone that you can do it. We are so very proud of you and I look forward to the day when you will stand up on your feet and stretch out tall like the 3'6" boy that you are..oh and Mommy and Daddy's backs will sure love it to. We love you.

{Happy Birthday Sister!!!}

Maddy.. today your Momma Mindy gave birth to you and how lucky we all are. You are the smartest, most beautiful, level headed, self driven girl we have ever hoped to have as a daughter. We want you to know how much we love you, appreciate you, and value you. We know things have not been easy and sometimes we can only imagine you may feel like you take a back seat to Michael because of all the attention he requires, yet you seem to be so understanding of it all.


We are so proud of you and all the love you give us and your little brother. He loves and adores you to, he always gets so excited for you even though he doesn't always show it. We could not have asked for or prayed for more in a daughter. We LOVE you Madison Jade!

{This Year 2010}

This year my son you turned 3 years old! What a big boy you are. You have learned so many new things.

You learned how to sign for MORE,FOOD,MILK,WANT,THANK YOU, PLEASE,HELP,FLOWER,BIRD,FISH,CAR and MOMMY.

You have learned to take the pictures from your communication board when you have decided that you want one of the items and give it to us so that we know what you want.

You now can point to all your body parts when we ask you where they are. You can verbally say "yeah" along with nodding your head yes, say "no" {with in this last 2 weeks} and shake your head no.

You can call out and say Daaa when you want your Daddy. You now interact with your favorite Dora and Diego when they are on T.V. You amaze us our little miracle. You also now sleep through the night and that has made us very happy.

You are a big boy and go to Pre-School now on the bus like a big boy where you can play and learn new things. I love the art you bring home to me, I love that I know you did it...do you hear me son YOU DID IT!!

You are such a beautiful,smart, loving boy. We will get you through, we will always be here to

help you with life.

I know you don't always like wearing your leg braces and you hate that there is a walker in the house, that even though we don't push the walker on you, you know what it is for. I know you will come to terms with walking in your own time and it is our job to love you, be patient and support you through the process.

Each day is a new day and with it brings new little things that add up to a whole lot that you do.

We are not finished finding out ways to help you though, Daddy and I will never "be done" trying to find answers and solutions.

We found out from the doctor that the part of your brain that is defective does not explain why you are not walking and talking. So our quest has to continue. We will not rest until we have answered all of the questions. We found out what part of the brain effects speech and we found out that a lack in B1{thiamine} can cause all the delays that you have. We found out that if I was deficient in B1 when I was nursing you that I could have passed on this deficiency to you. I have found out that due to my gastric bypass surgery that I do not absorb B vitamins from food, so even though I took supplements it may not have been enough for both of us. I have set an appointment with the doctor to have your Thiamine levels checked out, I know how much you hate blood work and I am sorry but one day I hope you will understand.

We have discovered that if you are Thiamine deficient that once you start Thiamine treatments the effects can be totally reversible. We have to hope for the best, Hope is all we have to hang onto.

We love you so very much. We will see what the next step in your journey is next week.