{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.