Little Hands and Gentle Hearts

Those little hands are Annabelle's. She is 3 now. I am not entirely sure where time went or how she is now a preschooler rather than a toddler. She is loving and strong and vibrant. Everything she is meant to be. She is amazing.

But those hands, those hands remind me of the gentleness I need to put forward. The soft that makes me the woman God created me to be. I focus on helping my children to be who they are called, but I often forget who I am called to be.

Life is hard. Very hard. So many moving parts that create an insurmountable wall of fear and sadness. I often want to quit. I want to give up on everything and just fade into the darkness in my mind.
but I don't

and I won't

Because those little hands need my guidance still.

Some days I can hardly breath. I just don't have the energy. But I keep going, because this is part of what I am. Who I am. 

I am trying to learn from it rather than be destroyed by it.

Often, I am bitter and angry. I want to be spiteful and vengeful. I am after all human. But instead I silence myself and quiet my heart.

I just pray that this cloud goes away.

Pictures You Won't See

In my basement, on a ledge, is a stack of pictures set into frames I never hang. Pictures of the boys in matching yellow and blue sweaters. A picture of the three of us for the church directory. Pictures at Tyler's First Holy Communion. Pictures of the boys

Pictures of my boys and me in the years between. Between Daniel and Trevor, between broken and functional. Between here and there.

Those pictures are too painful to look at. Even 14 years later I still hold my breath when I see them. They bring me no joy. No comfort. My heart skips and I feel my stomach plummet when I see them.
It was by far the worst time in my life, the most painful. It was brutal. The visceral reaction to those photos is overwhelming and unpredictable. They bring me nothing but pain.

And yet I was refined by fire, even then.

I keep those pictures so that my boys will have them some day. I don't want them to not have that piece of their childhood simply because it was dark. It was dark for them too, but it was different in their eyes.

I am finding out how well I protected them during those years. Too well it would seem. There are so many things they don't know. So much I will most likely never tell them.

And yet I was refined by fire, even then.

Those trials as difficult as they were, shaped me into who I am. It created in me the destruction necessary to build an even greater masterpiece. One with faith as the glue.

I was a pretty blue vase.
The was shattered back then. The pieces were so small I couldn't fix it myself.
I had to give myself and all of my brokenness to God.
He created , in me, something amazing and even more precious.
He made me a beautiful serving platter, to serve my family around me.

Here I am , broken again.
The pieces no longer something I can work with.
I have no choice but to hand my brokenness to God and let him work with remains of that platter.
Because as beautiful as it was, it still isn't what I am meant to be.

I have no doubt that I will be remade many times within this parenthesis. Not every time will be this brutal.

But for now,

I am refined by fire.

Goodbye Too Soon.

A friend very dear to me has suffered a terrible loss. A life Gone too soon. I see people saying that they don't understand how things like this happen. How can one person feel so hopeless.

I understand too well exactly how someone gives up all hope.



22 years seems like long ago and far away.
I was 14.
I was lonely. I felt like I had no friends.
I was emotionally unstable.
I was self abusive
I was anxious all the time.
I was angry all the time.
I was sad all the time.
I would cry for no reason. Sobbing.
 A friend of mine took his life over a girl. I still remember my friend Kevin telling me in the band room. I was sitting on the left hand side of the stage. He was behind me when I asked him what was wrong. He told me.

I don't remember the rest of the day.
It was as though my brain shut off and I just couldn't function. That kind of emotional disconnect can be scary for a teenager. I didn't talk to anyone about it. I was isolated and scared and numb.

It started to make sense to me. I was drowning in a giant sea of despair.

Now I know those were all warning signs but back then I had no idea that I was in the process of a breakdown.
That weekend I took a bunch of pills.
I distinctly remember the clock in the car on the way to the hospital. 5:55pm.
I remember thinking make a wish.

"Dear God, please, please just let me die"

The next thing I remember was an incompassionate doctor shoving a tube down my throat to pump my stomach. I remember talking to the woman from the mental health ward as I threw up the charcoal they were pushing into my belly. I remember her asking me if I heard voices. I remember wanting to punch her.

22 years seems like a long time.

Years later. I drove my car into the water at Jone's Beach.
Again I had lost my focus. I was getting divorced. I was loosing everything. I had no job. I had no money. I had no pride. I had just lost Emma. I was broken. I was raw. I was tired of fighting th demons that chased me all hours of the day and night. I felt unlovable. I felt lost. I felt unworthy of the air around me. I was saved by an Angel.
I was 24. That was 12 years ago.

In those 22 years I have given life to 6 amazing children.
I have married the man of my dreams.
I don't know that those 22 years have had much more impact than that on anyone but me.
But, these days I know that nothing is so hopeless that it cannot be fixed. Nothing is forever. Nothing is lost forever. It may feel dark and cold where you are. It won't always be that way.
These days I have FAITH and TRUST in His Grace and His Glory.

I make this promise to those of you reading this. I am here. If you ever feel as though you don't matter. If you ever feel like there is no way out. I am here. Talk to me. I promise I will be there.
Because I do understand.
I have been there.

GRADUATION PICTURES

I promise at some point I will stop with all this. Soon. Just not yet.

And so it begins...

Tyler and Emily

Some of the family

How Grace passed the time

The principle , Mr. Dempsey

Ready to go

So happy the day is here. He seriously smiled almost the whole time

Listening closely to the names being called. We received a letter telling us there were no alterations allowed to the cap and gown allowed. Tyler braided his tassel to be different

My graduate after receiving his diploma

Two People that gave Tyler all of the professional building blocks he needed and tolerated him leaving his things behind almost every day

Three generations of Aggie.  

So very proud of my handsome boy

Yes, I am licking his cheek. He thinks it's funny to lick me when I'm not looking. This was my revenge.

His girlfriend, Emily, performing her "Vader move"

My Love

365days

I tend to forget all the wonderful positive things I have going on in my life. I really want to work at focusing on the wonderful amazing things that happen every day. My goal is to try to post at least once a day with something positive and happy in my life. It may not always be about Sammy. Feel free to join in if you like.

January 1, 2013

Sam was able to keep it together for the entire evening last night while we were at a friends house. 

It may not seem like a big deal to some but there were quite a few people and lots of unpredictable possibilities. He was awesome!

He held it together like a champ until the minute the car door closed, but when it mattered he was FANTASTIC. 

Circus

We were given free tickets to the circus and so we went. I kept my expectations as low as possible. I had my escape plan just in case. I figured it would end badly.

It didn't. It was really awesome actually. Sammy wasn't super thrilled but Nate and Grace LOVED it. Sammy did enjoy the foot juggling and has tried to imitate it a few times now. He wasn't really there with us, he was just kind of there. It's ok, any outing without a meltdown is a win in my book.

The kids had their first cotton candy. It was color free and flavor free. Just plain old spun sugar! SCORE!
Sammy enjoyed that. Nate did too of course. Grace did not love it. They rolled down the hill at intermission and played on the playground after.
We went home and all was well. Not a total win but it shows there is some hope yet.

Triggers, Tears, and Blessings

There are those moments in your head when everything swims around like stirred soup. Like soup it settles after a time. I am up late at work and spending time reading other blogs. It's like playing leap frog, from one blog that links another blog, then another. Some are great and so well written and still others I skip over quickly. I ended up on blogs tonight of families that lost babies.

I know better than to read these things. I KNOW BETTER... but I read on anyway. Somewhere inside I hope that somehow I can desensitize myself enough so that if it happens I won't break.  I always end up in tears begging God to not take my babies.I know, that should it happen, there is nothing anyone can do to make it not hurt.  I know better than to think of these things , especially when I am pregnant.

But it places things into perspective for me. It reminds me of how lucky I am to hold and touch and kiss my challenges.
It puts into perspective how blessed I am to be breaking up fights between Sammy and Nate. That when Nate has woken me up from my nap 134,543,345,345 times, that I am lucky that he wants just one more kiss from mamma. It takes the frustration I feel over curfew arguments and dating rules and reminds me I am blessed. My kids may forget to do their laundry and have messy rooms... but they are here. So for today the dishes can stay in the dishwasher and the laundry can wrinkle alone in the dryer. I am going to hug my kids and love them today. I am going to count my blessings and carry my crosses, because heaven knows...

I am blessed

Graduation

Grace with her favorite brother

My darling AJ graduated from middle school on Wednesday. I couldn't be any prouder of that boy than I am now. AJ gives me so much hope for the future. You see, when AJ was younger the doctors didn't think he would really be OK. He was very sick and frail and delayed in his development. He walked late, He talked late and he played late. He never gave up for one second though and was tough as nails from day one.

Band Director and AJ

He is that kid who hears a challenge in phrases like "That is impossible!" More often then not he proves everyone wrong, including me! He is charming, intelligent, thoughtful, and bright! Anyone who says teenagers are a drag have never met my boy. He. Is. Awesome.

Nani and Bapa with the graduate

He received his diploma, a certificate from band, and an award for keeping a 90 or better average through his time in Middle School. It hasn't been the best year for him with one of his teachers. AJ expects perfection from everyone, including himself, so when the teacher kept loosing assignments he got a little...angry. That is now behind us and we are looking forward to all honors and AP classes next year. Sports and Band are also on the top of the list, and secretly momma is hoping he tried out drama club too.

Proud parents and sister

He really is a star and I have to say, despite his issues he is TRULY one of the MOST amazing kids I have ever had the chance to know. I am so glad he is my boy!

love this boy

cool new link up

Concert

Wood School is being torn down. In just a few short days the old school will be a memory and the new school construction will begin. Sam is having a very difficult time with it. The staff  at the school have been so awesome with Sammy. I really feel blessed to have the school community that we do. It's been crappy here so Im going back to the good stuff.

They had their concert this week and it was awesome. Very emotionally charged because of it really being the last concert for Wood School. I watched Sam sing and realised how much fun he has performing. He likes to be on stage and singing or acting. A few years ago I would have said it wasn't possible, but it is now!

He was awesome Nate, Grace, and I watched the concert as they had their snack. Grace didn't finish hers so I left it on the bench. Grace got  fidgety. I brought her to the back of the room. We saw Sam in the hall after the concert while they waited to preform the finale. I got a great video of his teacher and him dancing,

When Sammy walked into the room for the finale he grabbed the rest of the bar I left and ate it. His poor teacher panicked. I felt so bad for her. I did make him apologize and he was super embarrassed. He just has absolutely no impulse control. To him he did't do anything wrong since HE knew it was safe. I bet his teacher is glad the year is almost over!

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.

Suit Yourself ~ My Heart Monday

Spiffy. Yes that is the word he used to describe the outfit I gave him for Easter Sunday.


I stood in the store in tears looking at that outfit for a few moments. Thinking only to myself how deperatly I wanted to dress him up for a holiday. How badly I wished my family could just once go out and be above the chaos. I wanted to be able to go to church without the fight and without pajamas. I didn't want to spend the money if he wouldn't wear it. I really didn't think he would.

Thank you Wonder Hubby. Thank you for stepping in and believing our boy could do it. To most parents it seems like a given, holiday = dress up. Not here, and I am sure not for most families like us. Sammy saw the outfit and put it on. I was being so careful not to get my hopes up. Even if he got it on doesn't mean it would stay on. In fact if one thing bugged him he wouldn't wear it at all.

We kept the tags on. Just in case.

He put it on with daddy's help. He even combed his hair. he came into the room for me to see and I was speechless. He posed for a picture. Wonder Hubby asked him

 "Sammy where did you learn to pose like that?"
Sammy's response ~"Napoleon Dynamite"

 The tears, the hope, the dream of just feeling like everyone else for just a little while was standing in front of me. I don't know why this was such a big deal to me. It shouldn't matter, but, it does. After all these years, it still matters. I held my breath on Sunday for the shoe to fall, for it to swing back and hit me in the face.
It was nothing Short of magical. Thank you Lord for the reprieve. It went by fast but it was a very good day yesterday.

This just reminds me that I can't assume. I can't get stuck on what Sammy doesnt do yet. I need to make sure I give him the same options the other kids get and stop jumping the gun. He may have autism, He may really struggle,but he is still an incredible 7 year old boy.

In This Moment

Today we went to do our taxes and brought Sammy, Nate and Grace with us. Tyler and AJ were at work. The boys did well and so I was really pleased. The news was good as far as the taxes went so we decided to go for a treat. I needed to go to the walkin because my hand is really hurting.  I have it in a brace right now and for the last 4 weeks I have been unable to move it off and on. I can barely hold my phone most days lately. Well, the walk in was closed. We had told the boys we would take them for lunch after the doctor visit, but now there was no doctor to visit. We went to the bookstore and each child chose a book. They played in the castle and they just really enjoyed it.

Sammy struggles to read and even though he can he hates to do it. I was hoping that by finding him a book he liked he would want to read. He chose one (the Avengers super hero series)and we were on our way. 

As Daniel paid for the books Sam wandered and picked up a book about guns. It was a very technical book with diagrams and notes. He was awestruck and sat looking at each label and piece of the guns written. It probably wasn't a good idea to sit and let him read it, given how angry he can be. For that moment, he was just Sammy, with an interest in something that he wanted to see. I didn't want to make him obsess over it (and he likely would have, if I hadn't let him look). If it were any of my other children I would have pulled it open, sat beside them and checked it out. In my head guns don't always equal violence.It doesn't always have to be a bad thing. I would never own one simply because with a child like Sammy I couldn't guarantee it was safe. So I pulled open, sat beside him, and we read about the different calibers,types,makes and materials of all the weapons. I was bored but Sammy enjoyed it.

We took them for lunch and Sammy was awesome. Nate was the cutest little thing, ever! and Grace, well she is just all kinds of awesome! 

It was time to pick up the big kids and so we went. Tyler got in the car and Sammy told him "We had so much fun, we went to the store,we got booooks,we played in a castle and we got treats.We went out for lunch!" He had fun and it was worth working hard to stay in the moment. Too often I get stuck in the moments of sad and gloom because of the changes in our world. I get sad because things are just so different sometimes. I look ahead  and around and I miss the stuff right now. I miss it too often because of the fear and anxiety of the world around me and how things might happen. Today, I lived in the moment, where the good stuff is. I didn't miss it and that makes me smile

Blessings

I don't often write on a weekend, there is often just too much to do around here. Sunday's are usually really hard for Sammy, but with the sunshine and  slightly warmer weather, everyone is outside right now. We missed mass this morning because the car was being fixed, so we will go tonight. By then Sammy will already be dressed so it shouldn't be the drama it usually is. I may actually get to enjoy it tonight!

I am not writing for any of those reasons, but because I wanted you all to know how very very blessed I feel! I never would have imagined 4 years ago that Sammy would be able to touch so many lives. I get letters here and there from people who have been touched by his story. I get emails from moms that no longer feel so alone. I get asked for advice. Sammy inspires people through this blog. over 200 people are now reading almost every day according to my stats. I don't feel prepared for any of it, but regardless it's there.

Shannon AKA "my ponytail"

I wanted you all to know about the Autism 5K that my friend is doing. The team name is "For Sammy" take a look at this! Now, when I saw this I burst into tears. Not misty eyes little tears , but catch in your throat kind of tears. The ones you can't stop, can't fight, and can't forget. Shannon has helped us with Sammy's behavior for just about forever.Sammy loves her and called her "My Ponytail" for a long time. She is one of my very closest friends and one of the few I consider part of my village. I am blessed beyond measure by her. I know that she is ALWAYS in my corner. I know she loves Sammy. So she names this group "For Sammy" and the proceeds are going to autism research.

I don't think I have ever felt so lucky,loved and grateful as I do right now. Thank you Shannon, from Sammy, our family, and every child this will help. It is such a BIG DEAL.

I am blessed to have you in my life.

There is no I in Team

There is no I in Team ~ unless you talk about the IEP team, then of course you do find an I, but it's not part of the word team, just part of the phrase.

I feel blessed. seriously amazingly blessed to have the team we do for Sammy.

Sammy has been struggling for a few weeks...months at school. It has gotten steadily worse to a point where he was refusing to do his school work, getting sent to see the principle, bringing home extra work he didn't finish and so forth. Nothing was working. Nothing we tried seemed to help. His principle even called during vacation week hoping we could figure something out before we went back this past Monday.

 We included a friend of mine that works with kids like Sammy , his teacher, the principle and myself on an email. We considered having him stay after school to finish, but given the fact that Sammy asks me every day to pick him up that probably wasn't a great idea.

Here is what we all came up with. If he completes his work during the afternoon he get's video game time at home. 30minutes right after school to play his beloved star wars lego game. If he does not complete his 3 things then he does not get his video game time right after school and looses his choice for the SWL(Star Wars Lego) game for his evening time . He can choose his other games for that time. His principle came up with an awesome visual for him and we are not 3 for 3.

I love our team. I really feel like I am heard. More importantly I feel like Sammy has a voice for what he needs. I really feel so blessed.

Lightening Speed

We woke up late today with just under 20 minutes to get ready for school. Normally this would result in total absolute chaos and the wailing and gnashing of teeth. It would end with me throwing Sammy over my shoulder and sitting him in his bus seat. It never ends well when we wake up late. The pressure of moving and get it done fast is usually too much for Sammy even on a good day. We have never ever had a good morning when being woken up late. Chance once again saved the day. jumping up as usual onto Sammy's bed licking him and pulling off the covers. I told Sammy we had to move quick. He looked at me and said "is it late" when I responded yes I expected him to start flapping and squeaking. I noticed my hands had already formed fists at my side ,clenched and stressed for what was to come. Nope ...Nothing "ok, can I wear this, will kids laugh at me?" I told him his shirt was great and he got up changed his pants,put on his socks and boots and ate his breakfast. Chance did not leave his side the entire time. Sammy at his oatmeal, made a choice for his lunch bag and got his coat on to go. No issue...no argument...nothing! Chance followed him to the fence(he hops the back fence to go to the bus with our neighbor). Chance watched him jump the fence, and waited until Sammy was in the neighbors house. He came back in and went for a nap. Mornings like this I forget. Mornings like this make me smile, make me trust,make me believe that it all can be ok. There may be no magic bullet,

there may be no answers, but for today, I got more than I ever thought I would have.

Cuddle Bug

I have been crabbing lately about Sammy and his disconnecting from us. Last night I decided to push the issue a bit. If he doesn't want to be part of my world I will put myself in his.

Last night Daniel and I had to run to the store. We needed milk and yogurt and cheese. We planned on leaving the older kids in charge of Sammy and taking Grace with us. Nate was fast asleep.  Sammy popped up off the couch and told us "I am coming too" and quickly got dressed. OK! how could I say no. He came to the store, he pushed the cart  and helped me put things in. I tried to engage him with each thing. I prompted him to smell fruit, we weighed broccoli, we picked out GF waffles. He only wandered a little a few times and I was able to redirect him back over to us. I had fun with him. Daniel even taught him about scratch tickets in the vending machine (ohh the things men teach their children).

He was awake and in my bed when I got upstairs playing on Daniel's phone. I put the phone away and asked him to cuddle. He was ok with it but said he was not going to sleep. What happened next was nothing short of magically and exactly what we BOTH needed!

He wrapped his arms around my head and played with my hair. He snuggled in close and told me he loved me... like a banana! he kissed my eyebrows and fell asleep cuddled up with me.

Thank you Lord I needed this so much.


This morning however right back to where we were. I will take those moments and hold on to them. It's the only thing getting me through today.

Puppy Love

It hasn't even been a week yet but Sammy is in love. This is Chance. He was surrendered by my brothers friend. He is housebroken and behaves pretty well. He is a BIG dog. He looks my four year old in the eye. He thinks my bed is his too and follows Sammy like..well a puppy. We don't think he is more than 2 years old.

He started out with such a sad life. He was kept in a crate for a long time and was an absolute mess. He was over 6 months old when he learned to walk. He was neglected and who knows what else. He was then adopted by my brother's friend. He took care of him well enough but just couldn't keep him or afford to feed him. So, Chance was brought to my mom's and then here. He is such a sweet dog. very love starved and in need of constant reassurance.

Every time Sam gets into trouble he takes the dog upstairs with him, so he doesn't even fight it anymore. Every day since Chance came into our lives he has gotten up and gotten dressed after being woken by the dog. I hope and pray this isn't like other things that quickly fade away. I hope having Chance continues to be as awesome as it has been this week!

Follow up for Amelia

Parents: Transplant for disabled girl now a possibility at CHOP | Philadelphia Inquirer | 01/31/2012:


'via Blog this'


Some of you may have read my post a while back about the little girl who was denied a transplant based on her  developmental disability. The doctor they met with felt that she should not have a transplant and therefor would not recommend the transplant to the board. 


What followed was an incredible outcry from the  special needs community. The hastag #TeamAmelia popped up and people began posting. Sunday Stilwell created a petition over at change.org and over 35,000 poeople have signed it.


The hospital has met with the parents and has agreed to look into it further. check out the article. It gives me hope for little Miss Amelia.

quiet

My mom took Sam and Nate last night. We had planned this for a week so that we could go up to the vocational tournaments this weekend. We obviously aren't going now that Tyler has been hurt and is out for the season. He is thankfully feeling a little better than he was on Wednesday when it happened. But it's just Grace, AJ and Tyler home with us right now and it is so quiet.

It's weird, I feel guilty enjoying the quiet. I have a long list of things I want to get done before they come home tonight. Laundry and vacuuming, reorganizing the playroom and the basement. So many things I want to do, but instead  I am drinking my coffee and writing. I am relaxing. It feels almost sinful to be chilling out when there is so much to do.

Today is my oxygen mask. Today it's about me. Today I get a break from the pull of what autism has done to this family. I don't have to worry about how I say things. Today I can breath. It's about damn time , don't you think?