Thursday, May 31, 2012

Autism and the Sun

Many years ago autism was my sun. My entire world revolved around it. I ate slept and breathed it. Autism  ate me from the inside. It was like my own personal zombiepocolypse! I couldn't go a moment without it intruding onto my thoughts, my heart and even my dreams. It was the center of my universe.

That was a lifetime ago. It isn't that way anymore. It is now just a moon trailing around my lazy little planet full of chaos. It's there, but it only comes out when it is dark. it hides when I am not looking at it. Sometimes i forget it's there. Until it gets dark and then all bets are off.

I look forward to the day when it's just a distant twinkling in the sky of some far off star. When the moons around my little planet are just my babies.

Someday...


But until then I watch the moon each night as it waxes and wanes. I sit in silent awe of the beauty and stillness that can surround it. I listen and I feel and I hope and I dream. I know that even if it is always so close I can taste it, that it will all be more than ok. Because this... this is my life, my world and I say so.

I can't help but smile at my boy when he gives me his goofy grin, just like the man on the moon. He's there even if you cant always see him

Saturday, May 26, 2012

I am not a Martyr

When I talk to people out in the community about Sam I always get the same look.  Other special needs parents know the look I am talking about. The look that says "OHYOUPOORTHINGIHAVENOIDEAWHATTOSAYNOW" and is almost always followed by "everything happens for a reason"  or "God doesn't give you more than you can handle"
I know people just want to be nice or say something clever and sweet, but we have all heard it.  I think , personally, the tone used upsets me more than anything really.


I don't want to be your martyr, I don't want to be your poor thing. I want you to understand that this is not a death sentence, it's autism. We live with it every day. It sucks and it's hard but that is ok.


Friday, May 25, 2012

For Granted

When you have special needs children , you don't take things for granted the same way other people might. I don't assume my kids will walk and talk on time. It's always a huge relief when they do. I watch all the kids move through their developmental milestones and I check them off my list. Like a constant imaginary check list only I can see.
eye contact ...ehhh check
play skills .. yup check
responds to name... check
points... CHECK!
I still watch with an over critical eye. Nate has some weird things he likes to do. I worry I am missing something. he will screech for no reason and then go back to playing. He will verbally stim on silly words and get stuck on other words or sounds and just repeat them. I find him lining up stuff and he can be so very rigid in his thinking. He has sensory issues and hates socks just like Sammy too.

It could be personality. He is a headstrong little guy. He is too social for me to really worry. He warms up slowly but once he is comfortable - watch out! I am so scared I am going to miss something. How much is just what he has learned from Sammy? How much is just adaptive behavior to deal with the chaos that Sammy brings to our house? How much is an issue?

What if I miss it again?

I watch Grace and I go through the same list. What if I am wrong? Again.

The upswing to this is that every single milestone seems so huge. I am aware and focused on them. I enjoy watching the children work to acquire the new skills. It's like every day is Christmas here. I don't know if I would ever have thought this way without Sammy and his issues. How can someone feel so happy and so sad at the same time? Nothing in life is ever just sweet anymore though. There is always a bitter edge to any accomplishment.

I have been watching Nate slowly pass Sammy and that is getting difficult. Sammy can see some of it and he is frustrated too. Sam works so hard, it's just easier for Nate. What is going to happen when Grace passes Sammy too?

Until we get there I won't worry too much. I will just try to relax and enjoy where we are. I don't assume tomorrow brings anything, but I am always hopeful.

Thursday, May 24, 2012

The Mystery of the Disappearing Pants

Sammy has some sensory issues, well a lot of sensory issues actually. He has a lot of rules for clothing, especially pants. His pants have to have a drawstring, be soft, no buttons (not even fake ones), elastic waist, he prefers them to be blue and they cannot make any noise. I bought 5 of the same pants to add to his other 3 pairs he would agree to wear.


 I am down to 2 pairs. I don't know where they are going but they aren't in the laundry, or in the bathroom, or in his room... or anywhere I can think of. God i hope he isn't throwing them away!
We had a similar issue with his socks. he would go to school with them and then come home without. It took forever and some stealth work but we figured out he took them off at lunch and threw them away. He obviously cannot do that with his pants.
So where are they going?

The Bunny Baby

Our neighbor's have a cat named Rylie. He is a great hunter. He leaves us mice and bird halves all the time. This is the cat that would scare Chance just by looking at him. Chance doesn't seem too spooked by him these days thankfully! Well tonight I heard my  neighbor yelling for my older kids. I assumed Sammy had gotten out and was having an issue. I knew it was quiet possible that Sammy was just outside ...naked

Turns out the cat caught a bunny. Itty bitty baby bunny. Poor thing is hurt and has some superficial  wounds along its body and its head. It's  the sweetest thing I have ever seen. I didn't know what to do. Then I thought Cat the Dog Officer she will no doubt know what to do. She is awesome! We called the animal control officer but her office was closed. Then the vet down the street that wouldn't touch it because it's wildlife. then MSPCA and then a wildlife rescue. lots of messages and such.

Sammy has fallen in love with the bunny. He was holding it and talking to it. He can be such a ray of total sunshine here. I just hope baby bunny makes it through the night since it will be the first thing Sam looks for in the morning.


Tuesday, May 22, 2012

Sunshine

Sometimes I get rainbows with Sammy. It's as if the windows fly open on a warm summer morning by the ocean. The breeze comes in and calms my soul, quiets my mind and helps me to see the flowers that bloom in my life. Flowers like my precious boy, so proud of himself.  He cut his hair, all by himself.

I was so frustrated at first, and also pretty angry! He was a little sad he cut his superman curl (the curl under his bangs and the only curl on his entire head) He showed everyone how he cut his hair all by himself! I have never seen that boy so proud of himself. He went to school with it as is since he wont let me fix it. I really hope the kids don't tease him.

He was giving out shopping carts at Market Basket yesterday as well, just so he could let people know that he cut his own hair.

fluffy head before
after ~ with daddy's glasses too!
I am blessed with a boy who has sunshine moments inside of some rather dark days. I am blessed with a breeze today.

Saturday, May 19, 2012

Level of frustration

I am back at work this week for the first time in months. I have the most amazing sweet family that I am working with and the most beautiful little itty bitty babies. For those of you new here I work overnights for So Many Babies. We work with twins and triplets overnight and help moms and dads manage their nights with multiple babies. I like what I do. I just dont like being tired all the time. Being the first week back it's been hard here.
my level of frustration is rising and I can't get ahead of it. Yesterday as I napped, Hubby had the kids totally under control. Or so I thought. Sammy came up just a bit after I fell asleep with his hair clumpy cut short. I cant win I guess.


Wednesday, May 16, 2012

The Car in Front had My Heart

One of our cars (The Mazda) died on my way to work last night. In fact I was 1.7 miles away from my destination. The car didn't care it just revved loudly but would not budge.  I left it in the gas station parking lot that it was so gracious to drift into. I walked the rest of the way to work since it would take longer for my husband to get me than it would to just go to work since I live well over an hour from the family I am helping right now

begin comedy of errors...

My boss was going to pick me up in the morning so at least I could get home. She was also going to drive me tonight since she was going the same direction. My husband called and reinstated our AAA that we had cancelled a few months ago. He would pick me up from the park and ride and bring me home , go to work late, and then go meet AAA after work.

My mom had the kids. Dan forgot to pack Sam's lunch. I had no car. My mom saved the day and brought him a lunch. I was so tired from working overnight that I was cranky with Nate. I may or may not have lost my temper when he woke her 35 minutes into her nap. I had to deal with some other work drama and figure out how to get home the next morning without making hubby late.

He called me on his way up to the car and asked where the keys were. I swore and cussed and cried, convinced I had them (turns out I left them in the ignition). I was a mess and just couldn't stop the panic. He came home. He rented me a car. he saved my ass, as usual. Thank GOD FOR MY LEVEL HEADED HUSBAND!

He got the children in the van (well Sammy and Grace anyway. Nate fell asleep beside me while I napped before work) We all drove towards my work. It was raining so hard and I was a nervous wreck. Weather of any kind makes me on edge. I suddenly pictured an accident and Sammy not being buckled. My heart raced and I got very nervous. All I could think was part of my heart is in that van. Sammy, Grace, and Daniel. The entire way up I just kept thinking how odd it seemed to watch my heart outside my body traveling away in the van.






Sunday, May 13, 2012

Our hike to Aggie

We ventured out this weekend with the Dog and the children. Tyler had a wrestling clinic Saturday so we all went to bring him up to Bristol Aggie in Dighton. We walked everywhere and checked out all the animals. chance met cows, horses, and piglets. He did wonderfully. Sammy ran and ran and ran. He rolled down the hill by the baseball field. Sam, Nate, and AJ rolled and rolled. AJ may or may not have actually gotten dizzy this time.
video

We met a beautiful horse that was huge and very calm. He stood there and let Chance come to him and say hello. He bent over and nuzzled Sammy. We really enjoyed the walk. The boys fed the cows and the horse grass. They ran all over the place and picked buttercups.

The wrestling program had free watermelon and so the boys (and girl) enjoyed some. Even Chance had some watermelon.  We got in the van and headed home to prepare for AJ's party that night. It really was a wonderful afternoon!

Mother's Day

I am in my room, resting and having some quiet time. I cuddled with Nate and Grace this morning and then dan went downstairs to take care of the kitchen (AJ's party was last night so the kitchen isn't as clean as I would like). He is making coffee.
30 seconds into my mother's day back rub and Nate starts screeching and crying. that was 9 minutes ago. So far now Sammy is melting down, Grace is screaming, and all hell is breaking loose downstairs. Yes, this is my mother's day.

Daniel just brought me up a cup of coffee and when I asked what was going on he said "nothing everything is fine" and ran out of the room. I assume if there was blood or disembowelment I would know. RIGHT ?
So I am trying to be good and stay here like a good girl. I don't want to ruin their mother's day for me. God help me we have a christening and a first communion today, AJ's birthday, and Emily's (Tyler's girlfriend) confirmation.
Sammy is now screaming as though he has been possessed in the next room. Grace is screaming because Sam is.
turns out Sammy lost the card he made me and is freaking out.
THIS is my mother's day what is your like today?

Saturday, May 12, 2012

Point of View

I'm trying to write this down this morning before I forget what was said. Sadly I have already kind of forgotten. It was amazing and made me smile. Sammy woke up and gave us a rare show of sunshine. He is currently down stairs screaming that he isn't going today with the rest of us for the hike we planned. He is refusing again and non-compliant. I think the function of his behaviors lately are control. He cannot control the fact that his school is changing, his teachers will change, and his aid may even change, so he tries to control other things.

He was in our bed this morning. Nate was in our bed this morning. Grace was in our bed this morning. Chance was in our bed this morning. WE HAVE A QUEEN SIZE BED. I was complaining to Dan about how I had no room most of the night since Nate was on one side, Sammy was on the other  and Grace was on top. Chance woke me up getting in after Tyler let him out from his kennel. Sammy looked at me and said

"Wow your a lucky Mommy, you get to cuddle all of us!"



I agreed.

Thank you Lord for the small rays of sunshine


Friday, May 11, 2012

Where it Began

It's been a crazy week here. Tantrums, refusals, non compliance and angry outbursts. I'm writing to forget about what this week is like. I need to get out of my own way.I don't know where this post is going. I don't know what to write. I just know I need to write.

Where did this began? How did I get here?

I can sugar coat the world I was in or I can be real. This life here, as difficult as it is now, is still easier than my life before. It's still brighter and less emotionally taxing then the way things felt before Sammy, before Autism.

Yet the life I was living so many years ago before  was filled with shadow and pain. I was broken inside. My life before Dan, Sam, Nate and Grace was a blue vase. I can't say I loved it. I didn't. I wanted to run from it every day. I hated the life I was living and some nights I went to bed praying that God would take me in my sleep so I wouldn't have to face another day. I was desperate, I was broken, and I wanted out. 

Things fell apart and I fell deeper. I felt like I was underground walking through mud. I felt scared and lonely all the time. I had no direction. I couldn't breath. I made a lot of mistakes, I hurt people. I hurt myself. I allowed too much and never put my foot down. I was scared all the time.  My blue vase was shattered into a thousand nasty little sharp pieces.  I was angry at everyone. I was angry at God. I was , most of all, angry at me.I lived it , but I didn't "get it" I had an older son with Aspergers but the effect of it was minimal. It wasn't real because it didn't really change anything. He was in 3rd grade by the time we knew anything was really up. It didn't hit me like the freight train Sammy's diagnosis did. 

I found direction a few years later. I found my strength and started moving towards the life I have now. I discovered in the space between that I am far stronger than I even give myself credit for. I found my faith and made peace with God. I took some extra deep breaths. God fixed my vase, and made a beautiful blue serving platter. Now it doesn't  just hold the things I like, it serves everyone around me.
 then Sam was diagnosed. It shattered me, or so I thought. I thought my beautiful blue serving tray had been broken, it wasn't. Everything is just the way it should be here. Sammy is wonderfully made and who he is. It is Sammy (and this blog) that brought people to me.  i wish Sammy didn't have to hurt and struggle. I wish it was easier for him. I wish I was a better mom for him some days.


I am working through where I was so I can get to where I need to be. I have found, on this journey that It isn't always the strength that matters. Sometimes, we have to be soft and malleable so that we can accept, adapt, and move on.

I have love now. I have safety.I spent a long time being super strong and guarding my emotions. I didn't cry, I didn't feel, and sometimes I didn't sleep. Since having Grace, I have found a softer side that I wasn't sure I had, there may even be a few bunnies having tea around here.

So even though my week has been hellish and I want to pull my hair out, I have also been very blessed and loved this week.  No matter how bad it gets here, even at it's darkest hour, it is still far better now than it ever was then. 




Thursday, May 10, 2012

Midnight in the Garden

Wasn't I just writing yesterday about feeling like Sammy isn't autistic?  Sometimes I feel like I don't fit into the whole autism community because Sam "seems so normal" Then we have moments like last night.
He couldn't sleep it was well past midnight and here he was flapping away and making noises. I haven't seen him do that in weeks maybe even a month, so it was weird to see him doing it. In fact I couldn't figure out what was shaking the bed until I looked over and saw him.

We got Chance to lay with him. just calling Chance over and having him follow Sammy to bed, he was thrilled. He pranced over and laid down beside Sammy, snuggled up, and helped him settle. Dan covered them both with the blanket and they laid down quietly. A few minutes later and Sammy was asleep.Chance then went to his kennel for the night without an issue.
Chance  hanging out in his kennel 

 He helped us wake him again today and Sammy got dressed and ready in just a few minutes without a huge fight. We were late waking up since my wonderful Tyler took my phone downstairs and so I had no alarm. I woke up to AJ leaving the house and slamming the door at 7:35! Sammy has to be at Ms. L's for 7:55 to go with them to the stop. 20 minutes to get Sammy up,dressed,fed,packed and out the door. I couldn't find his homework since it wasn't put back in the folder and that took a bit of time. He did it Chance followed him around the upstairs the entire time he was getting ready.

Here is to hoping tonight he goes to bed a little easier.

Wednesday, May 9, 2012

Fraud

Sometimes I feel like a fraud. Somewhere in my head I still feel like Sammy isn't autistic they must have been wrong. How the hell am I still in denial; all these years later? Seriously, it does't make sense.
He gets so much help at school, he cannot regulate himself, he scripts, he stims, he has PICA, he spoke almost entirely in movie quotes until he was well over 4, he makes fleeting eye contact, his social pragmatics are so poor he couldn't even get a a score and yet I wonder. Yet somewhere inside I wonder if it's in my head, if he really is fine and it's me who is the mess.

Then we have nights like tonight, along with days like today, and weeks like this week that remind me like ice water in my face that, yes, he is autistic. I don't want to negate his struggles by saying "well he is high functioning" because every time people hear that they think "it isn't too bad then"
But days like today SUCK.
Weeks like this SUCK
and I don't know what to do. I can't be a super hero.


I don't want people to think I am always negative, or always sad, or hopeless. I know tomorrow could be better, but I don't want to get my hopes up.
All I can say for this evening is Thank God for Chance
Sammy fell asleep and woke up nasty. Screaming and crying, curled in a ball and rocking. He couldn't stop. We tried a snack, we tried some sweets...nothing.
Then Chance came in the room rested his head against Sammy and instantly Sammy stopped , snuggled in the Chance and was giggling at the "pee fountain" he made a few seconds later (in the bathroom). He flipped out over his homework and again Chance sat beside him. He was calm, he got it done.

It isn't times like this that I doubt his autism, it's the good times. When he tells me a story that makes sense, or when he really connects. Those moments are a gift and instead I allow my emotional baggage to come in take over and create doubt. People that know him don't doubt his autism... but all these years later I still do.


Tuesday, May 8, 2012

Angel in our Corner My Ponytail

Ok so maybe her name isn't really my ponytail but that is what Sammy called her after the first time he met her. This woman is so awesome and I can't even tell you how much we love her. She came for dinner and had the chance to see Sammy just being the whirling dervish that he is. She didn't bat an eye, in fact she pointed out all the amazing things Sammy was doing. She has helped us come up with behavior protocols and changes for him. Without her we would probably still be crying in our soup trying to figure out how to work with Sammy at home and this year when things got ugly, she was there to help and support me.
Every once in a while you meet someone that you know loves you and will be there for you no matter what. Well now, not only is she that person for me but also my boy. I can't begin to explain how loved I feel just knowing she is an Angel in our corner.


She wrote this for us...


On Saturday April 28th, my friends and I ran (read: walked :) )  in the 3rd annual Las Vegas Race for Hope; a 5K race that benefits families with Autism and raises awareness and education. This race is sponsored every year by the Grant A Gift Autism foundation and has grown in numbers each year. This was my first year participating in the event and I even made my own team! (this sounds easy, but let me tell you, managing adults is much harder than managing kids!) We walked in honor of Sam. Beautiful, wonderful, amazing Sammy who has changed my life in so many ways. 


The money from this event goes to benefit families in Nevada  so it may seem odd that our team was named "For Sammy" who lives in Massachusetts. For me, it didn't matter that the money raised at this event wouldn't make it to Sammy. For me it wasn't really about the money (although it's a really great thing for families who need help). For me it was about spreading awareness and education. For me it was about making people understand. For me it was about putting a face to that 1 in 88. 




You see, Sammy was the first person I ever knew who had autism that wasn't a student or client. Sammy was the first person I loved who had autism. Sammy was the first person who made me see it all differently. Anne and I have known each other for many years and we have always been close. So when I found out about Sam's autism, I made it a point to do everything I could to help, everything I could to make this journey a little easier for Anne and her family. 


Sam is the face I see when people say "1 in 88". This family is the family I think about when I walk, run or volunteer at events...regardless of where they are. Sam is the voice I hear saying "my love you my ponytail" (his affectionate nickname for me) when people say "I can't imagine living with this every day". 

So, even though I work with kids every day who are affected by autism, Sammy is my 1 in 88. And I wanted people to know him. 

So on that Saturday we walked. Me, my husband and my friends who had never met Sammy. They all sacrificed their time. They all walked, ran and jogged. 

It was hot. 
People had allergies. 
People had bad knees. 
People had little ones and no baby sitters. 
People were tired (ok ok, its Vegas, they were hung over). 







But they all walked. Not one of them took a short cut. Not one of them decided to do the "fun mile" instead of the 5k. 
Not one of them complained. They all finished. With a smile. 

One of my friends said to someone who tried to convince her to take a shortcut "this kid we're walking for can't quit his autism so why should I quit this race because my knee hurts?" 

I cried. 

I cried because she doesn't know Sam or his struggles or what he goes through every day just to get dressed. 

I cried because even though Sam wasn't there to see it, he had a group of amazing people walking to support him, running to educate people, limping to let them know that he has a team behind him every day! Even though he can't see them...they are there. And now they have a 1 in 88 too. 

I'd walk a thousand miles for Sammy. I love him. He's my 1 in a million :) 





He's my 1 in 88. 

Who's yours? 



linking up with Just Write over at The Extraordinary Ordinary

Monday, May 7, 2012

Eureka!

So we tried to change the tune here a little. It was either that or I was going out to buy an e-collar for Sammy ( I am KIDDING)
We went to buy plants for the garden since some of seedlings didn't survive or thrive. (note to self don't buy crappy cheep potting mix again) While we were there we saw Mrs. G. who is one of Sammy's angels at school. We talked a little and Sammy was so happy to see her.
On the way home Sammy informed me he was glad he saw Mrs. G since he wasn't going to school tomorrow.
I asked him why and this is what I got
"they are taking everything off the walls and taking down the work.it looks so weird I might faint you know. They are taking down everything and it looks like a black hole and I don't like it. I am never going to school again!"

Sammy is going to a different school next year. In fact his ENTIRE school is going to a new school while they build the brand new one. The change is obviously really upsetting Sammy. It makes me sad. I will be on the phone with the school tomorrow to fix this as best I can. Why cab't things just be easy for him?

Also look forward to an awesome guest blogger post from my dear friend Shannon (or as Sammy always called her "my ponytail") She walked for autism and she has something to say.

The Angry Elf ~ My Heart Monday

Sammy's behavior plan tanked today. he earned exactly 0 yes ZERO minutes today. He has had one behavior after another since he got home. He refused to work at school unless he was in the principles office. He came home with 6 papers that he didn't finish at school. Even chance won't go near him he is so out of control. He is currently trying to break my door down with his own body.



I hate this.

I hate how he feels and there is nothing I can do.

I am tired.

Apparently, so is he.

the work he needs to do is in pieces on the floor crumbled up. I am  officially at a loss. I feel like were on an airplane and the cabin pressure changed. I miss when things were simple and I could just be mommy and a cuddle worked. I tried hugging him and that didn't go so well either.

I need a vacation from Sammy.

I don't know what the issue is this year. I have never seen him be this defiant to anyone in the world but me.
There is one side of me that feel validated, as though I have finally made my point. It isn't just me. Sammy really is autistic. I didn't make it up and it isn't my fault.
The other side of me says it must be the teacher's fault. the other part of me feels sad were dealing with this .I fell lost and frustrated because I don't know what to do.

It isn't fair I want to blame his teacher. I don't want people blaming me, so why am I blaming her. I am ashamed at my response.

So I'm going to go run and get it out. I will take a deep breath.
I need to find an out of the box way to deal with this. if you have suggestions I would love to hear it.

Sunday, May 6, 2012

Sundays ~ I need help

For some reason Sammy comes unglued each and every Sunday. The second he figures out it is Sunday the screams and hollering begin. We have tried telling him it's Sunday the night before, the morning of, not telling him at all, telling him after he gets dressed, making it sound fun, rewards, punishments, social stories, pec boards, being matter of fact...we have tried everything!




No matter what by the time we get there someone is either crying or bleeding. Once he gets there he is usually fine and there isn't an issue. It's getting there that is the problem.
I am at a loss as to what to do. I need suggestions. I am pretty much begging for help right now.
Not going to church is not an option. What can I do to make this easier for everyone?

Saturday, May 5, 2012

Success

Today we took Chance to buttonwood park for his test with Rick from South Coast Canines to test out of Level One. We took him over a play structure, we walked around and we played. He did fantastic. We worked on sit (which lately Chance sometimes doesn't feel like doing) and the long stay. At one point Daniel dropped the leash and called Chance (which we do at home all the time) and he ran to Dan...and kept running. OOOPS!

last week working on the long stay

I of course became anxious almost right away. Thank Goodness Rick and Daniel are so level headed. The got him back and nothing bad happened. It took me forever to settle down. The rest of the lesson was great. It's funny I have no issues putting my foot down with the kids. If I say it I expect to be listened to. I have a hard time being that way with a dog.

CHANCE GRADUATES LEVEL ONE
When Rick has him on the leash Chance listened first try almost every time. I think Rick may be a true Alpha! I am working on being assertive and in charge.Training is just as much training me as it is training the dog.
It really is so much more fun when your doing is being good. A well behaved dog is so much more fun to be around.
This week we need to work on bringing the dog out to different places. We meet with Rick again in 2 weeks.

Friday, May 4, 2012

Stolen Moments

There have been many goings-on around here lately. I kind of feel as though the BIG GUY upstairs has been trying to get my attention. Some of the ways are subtle,others aren't. I am not sure what he is getting at but I can feel my heart changing drastically from who I use to be. It seems every few years God sends me off in another direction that makes no sense to me at first. Sometimes I get mad and flip out. I hope there aren't video playbacks in heaven. I can see me now screaming at the top of my lungs at God while driving 80 down the highway. Not my finest moment, but it's who I am.

I am getting to a point in my life where I am done apologizing for who I am. If it doesn't work then I move on. Sometimes though, it takes a lot for me to figure out that it isn't working.

Sunday at Mass Monseigneur said something that made me choke up right there in church. He was talking about  sin and how we can convince ourselves that it's ok, we just have to do a few things after to make it right (confession, penance..ect) but thats when the real evil takes hold. We hear that voice in our heads "You worthless nothing, haven't you already used up all of Gods graces by now?" Just typing the words right now made my eyes sting and my throat catch.

I wish I had a penny for every time I have heard that. It comes up almost daily, even when I haven't done something wrong. I hear it over and over. It never fails that evil just knows where the soft spots are. It comes after you in much the same way Voldermort went after Harry.

The message I hear every day is that I am not enough. I am weak. I can't make it work. I am a failure.
I am not strong enough.
not alone anyway

That's where my faith has to come in. Without it I would never get out of bed.



Matthew West - Strong Enough (Official Music Video) from matthew-west on GodTube.

Thursday, May 3, 2012

Long Way Home



The past few weeks I have become particularly sensitive to losses. There was an anniversary and a birthday of a wonderful man who was killed 4 years ago. I was blessed with the opportunity to read about a deeply personal moment frozen in time for a dear friend. I listened to an interview with Steven Curtis Chapman talking about the loss of his daughter. Little Avery passed away and it has all had a profound effect on me.

There is nothing you can say in those moments. There is no real tangible comfort is there? I lost my Emma when I was only 14.5 weeks pregnant and sometimes I feel alone. I feel like I can't relate to people who have had real tragedies. My Emma is real only to me, because she never took a breath, because I never held her. Sometimes it feels like she was never really here. People have said horrid things because to them miscarriage isn't a real loss. Whatever the reason I feel that way doesn't matter. It's how I feel. Some people meaning well say "everything happens for a reason" and "god doesn't give you more than you can handle" I always feel angry when I hear that. I don't think everything happens for a reason BUT I do think that God can use ANYTHING for his glory.

Hearing about those other losses always brings me to a thoughtful place. A few years ago that place was very dark and scary, but not too long ago I had a dream I was sitting beside Emma and holding her hand. It was peaceful and somehow I was able to hold onto those feelings of peace when I think of her. But losses such as the ones I have seen lately bring me to another place.

I talk all the time about the deep sense of loss I felt when Sammy was diagnosed. I have even spoken of the sense of loss I felt over Grace's injury. But Avery really got me thinking.
Even when we KNOW our time is limited (as all of our moments are) we still assume there will be more. You are never ready to let go of a loved one. How unfair it all seems sometimes doesn't it?

Avery's mom and dad thought they had more time. So did I. So did my friends. I am sure so many of you did as well.

We never know when our time is up. I look at Sammy and I think about all the time I have spent forgetting to just live.  I worry all the time. The shock of little Avery passing so soon has me really prayerfully thinking about death and dying, love and loss, and faith. Boundless faith, because for me, it's the only way I got through Loosing Emma, Divorce, Sammy being diagnosed, fear, anger,depression, Grace being hurt, and every other step I have taken.

I know one day we will be with our loved ones. I know one day everything will make sense and I will see the true beauty in all of God's plan for me, for Sammy, for Grace. I hope Emma knows me in heaven. I wish I could hold her just once in my arms. Someday we will all be home in heaven, but for some of us the road is just a bit longer.

No one should ever loose a child. It doesn't seem fair. If you have a moment and you are the praying type please say a prayer for Avery's parents and family. I am quite certain they need them.


And as Always joining up with the beautiful amazing Shell over at


Wednesday, May 2, 2012

IEP take 2

It's hard here right now. It's closing in on the end of the year and summer is quickly approaching.  The weather doesn't even yet feel like spring and I am already looking forward to the end of the school year.

We had Tyler's IEP meeting this last week and it went well. I love the new Special Education Director. She is really on the ball and totally understanding. She helped us come up with great ideas for Tyler to help his senior year be the best it can..

Tyler will be using a computer at school and will begin emailing his homework assignments to himself and to the teacher's when completed. The computer can come home with him. Tyler's biggest struggles right now are in the realm of executive functioning. He can't seem to organised the steps in his head to start and finish much of anything. Even with the things he loves like wrestling he will often forget his shoes or singlet. It only gets worse if he dislikes the teacher or the subject.

video
He has some major goals in mind this year. he wants to be captain of the wrestling team. In order to do that he has to be on the honor roll.  Big changes are coming now it seems. He is back on the mat after a devastating injury ended his season last year.