Friday, June 28, 2013

4 months!

it's been four months since Miss Evangeline joined us earthside and it's hard to believe it's gone by so fast.

baby #6 =26ish weeks

baby#6 - 32ish weeks
last picture of me pregnant with baby number 6. In labor and about 30 minutes before she joined us Earthside. I wish I was one of those people that loved being pregnant, but I just don't.

I feel like a stuffed sausage with teeth when I'm pregnant. But I love babies. I really really LOVE babies.
so it's worth it.

Hopefully it's a few more years before baby #7... if there is a baby number 7 

number one was Grace, number two was Nathaniel, and number three was Evie!

Linking up tonight with Shell over at PYHO and Rocking the Bump

Wednesday, June 26, 2013

Poor Sammy

Sammy has poison ivy. He found a cool looking vine, ripped it off the wall, and wrapped himself in it. He looked like something from Lord of the Flies. My darling husband noticed it first and was very shocked. You see we were at the farmer's market across from our house and Sam was "playing" with the neighborhood girls. They keep a close eye on him and they are always sure to let me know when he gets out of line. I want his childhood to be as normal as I can make it. I don't ever want autism to be an excuse for him to not do something he is capable of. Because, he is so capable.

So we washed Sammy down hoping that he would not be sensitive to poison ivy. My oldest son can play with it and never get a bubble.

Sam was not so lucky. It is everywhere.He is very uncomfortable and there isn't much we can do. We gave him steroids a few years back for croup and he was almost hospitalized for a severe reaction. We can't give him Benadryl because he has a paradoxyl reaction and becomes jittery and hyper. We settled on a liquid Claritin and it seems to be helping, just not enough. he has woken every night this week in tears because he is so uncomfortable.
It is everywhere and his body is reacting to it and causing hives on top of it.

But, he has learned never to touch poison ivy again. He can now identify it and he is aware of it.

Sometimes lessons can be painful and hard to overcome.

It had me comparing this to a lot of different things in my life. Change is hard and sometimes the result can be brutal. We learn one way or another and it isn't always the easy way.
I am grateful to have my faith to turn to when things don't make sense. It's the "liquid Claritin" my body needs and while it may not always take away the entire sting of the heartbreak (because I am still human after all) it helps to give me rest.

So while there are a few things weighing on me right now I know that this too shall pass. Until then I'll take my medicine and stay close to my Faith.

Tuesday, June 18, 2013

Field Day 2013

Today Sammy had field day. His temporary school location is beside a giant park. I love the location with the exception of the nightmare that is parking for events.

Today was field day and I took Nate, Grace, and Evie with some help from Tyler to cheer on Sammy and have lunch with him. His friends all sat with us for lunch and I really enjoyed their company. We all played Simon Says and talked about the weaknesses of different Super Heroes.

It was really beautiful ( by my standards) and I enjoyed the warm. I wore Evie and brought our umbrella stroller for Grace. Nate was super well behaved and so was Grace. They played on the playground with Tyler while I hung out with Sam and his friends for a bit. They came and watched some of the games and it was just a great time.

The para that worked with Sammy on the MCAS this year came over to make sure I knew how proud of him she was. She told me that he dd a great job and really worked to the best of his ability and then some. It's nice to hear good news sometimes.

Team sports are hard for Sammy. I can still see how difficult it is when I look at some of the photos. you know the ones where he is facing the opposite direction everyone else is, or when he just looks confused. Then Something awesome happened while he played hockey. He got into the thick fof things and shot the puck 3 or four times. It was so cool. in fact I was so excited I forgot to take a picture. he also shot 2 baskets!

So much has changed in the last few years. This is Sam and the little neighbor girl a few years back

and this is them now.

Time flies doesn't it

Monday, June 17, 2013

This is Hard

This is hard. Parenting a child with a disability is hard. there is no real way around that. It's hard, and sometimes, it sucks. No sugar coating it.

Like when you are at church with your 8 year old in the crying room because he just can't contain himself.
When that same 8 year old tells you he hates you and says mean things because he is just a mess over not finding his favorite shoes that morning. When the entire day is a  never ending series of blow ups, explosions, walking on eggshells, and teetering on the edge because of those damn shoes. When you begin to feel like maybe, just maybe, God made a mistake giving this child to you because , seriously, You are not equipped         in any way for this. When you find the shoe in the most ridiculous place and for a second fantasize about beating the teen that put it there, with the shoe. When you loose your cool, and scream and cry as though you have truly lost your mind... Those days suck. Those days are hard.There is so much else going on and so many other kids that need your attention too.When you haven't taken a family vacation in years because money is so tight.  The stress of taking your son somewhere unfamiliar is just too much. Because , after all this time you STILL worry what people think.

It's hard. No doubt about it.

but THIS ( possible trigger warning) and THIS (possible trigger warning)
makes my heart hurt in ways I can't possibly explain.

Because as much as it sucks he s still my boy. I still love him with an incredible fierceness. Despite the days I just don't wanna... I do
Because tomorrow the sun comes up. It isn't the end of the world
No matter how bad it seems

Because, once, at 14 I really thought there was no way out but a bunch of pills. Because clinical depression CAN happen and does happen even at 14. Even when people around you don't get it and think you should be happy. Maybe someday I will tell that story.

Even if it feels like no one cares... someone, somewhere does.
Even if you think it is bigger than you... it isn't bigger than two
My faith get me through those days now. By the Grace of God I make it through those days into tomorrow

Tuesday, June 11, 2013

I Love You

Sam has a new stim.
I see him doing it almost all the time. In places that we are quiet (church, stores, and school) he makes it a soft breathy sound. When he is alone or outside he does it and he is loud. It's constant. When he is watching TV or playing video games. he's very good at being discreet around his friends. I worry about what that kind of control might cost him. I worry that he is afraid to be himself and be OK.

I wish my boy had a world that understood him. Where people didn't say things like "see He showed empathy , he can't be autistic" or " he seems fine to me"
I want him to be in a place that people defend him and love him. I am grateful because our team does that for him. The kids in his class don't understand. They tease him for his weird behaviors, foods, and clothes choices. They tease him at lunch for his allergies and get mad that they cannot bring the snacks they want to.
But, Our TEAM stands up for him. The school Nurse goes in and talks to the kids about how serious allergies are to protect Sam and kids like him. His principle cheers him on when he makes the right choice. She returns my calls every time.

it's because of these people  working with Sam every day that I think we hit this next milestone ....

Those of you that read know how hard it is for Sam to say he loves me will understand how awesome this new development is.

He keeps repeating it to me,over and over again.
He sounds like he means it.
He hugs me every time he says it

In light of the chaos here I am amazed. It almost makes up for his new stim of sudden yelling in short bursts...

Friday, June 7, 2013

Grandparent Salute

Grandpa Gary
Every time Tyler had a fundraiser, needed help, wanted to talk, or had questions Grandpa has been there. 
This is my mom. My dad was working and couldn't make it. Nanni is always there when Tyler needs her. Whether it's for a ride, a phone, fundraisers, or just support , she has been there for him. Even rushing to our house to take care of the other littles when Tyler got hurt .

The best grandparents  that didn't need to be. They didn't need to love Tyler. They didn't NEED to treat him the same. They did it anyway. Never once has Tyler felt slighted by Memere and Pepere. They have been there for Tyler all the way from Florida! Birthday cards, get well cards, love, support and understanding. No wonder their son is so great!

Gran Gran has made such an effort lately and we are blessed by it. The support he offered Tyler when he went for surgery was a welcome comfort. 

To all of Tyler's grandparents. You are loved by Tyler. Thank you for your unconditional, unwavering love of  this amazing young man. He wouldn't be the well adjusted , well rounded young man without everything you have done to show him your unconditional, unwavering, no strings attached Love. So thank you for all you do.


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"

Thursday, June 6, 2013

How can it be THURSDAY already

How can it already be Thursday. How did my week fly by this way? Tonight is Tyler's graduation and this week has gone by much like the past 18 years. I can't believe its here. Every time I think about it I get a little more choked up. They aren't sad tears really. They are super happy tears.

I feel so blessed to have had the last 18 years with my boy. Our relationship is changing and I kind of like it. I am enjoying him more. The pressure is gone. I still take time to impart my "wisdom" on him but it just feels different.

I am enjoying this time right now. Every minute really. I will take what I can get, before you know it he will be in another state. I love him so much! I am so proud of him. He told me all about his goals and dreams for the future.  I have to say MY KID ROCKS!

I have the feeling of fleeting moments flying by, of knowing time is short, and of cherishing the moments we do have. I will take whatever I can get and make it worth it. Because, let's be honest, there never is really enough time.

His party is on Sunday at 1pm. My house. If you know where that is you're welcome to come by. We are planning a cookout and then a fire and manhunt after.

The young lady I use to watch is also graduating this weekend. I can't stand it! She has grown into the kind of young woman I want my girls to be. The right amount of sass and soft, intelligence and silliness, poise and whatever the opposite of that is!

So to all the graduates this weekend
Enjoy it. You only get to graduate high school and be 18 once. Live it up and be safe. Chase your dreams! And on your road of life remember those who have been there for you, those that love you, and those that taught you. Everyone else , shake from your shoes and move on

Monday, June 3, 2013

Hello Monday

Trying something new for a change and going to link up with Lisa Leonard for a Hello Monday

HELLO - to a prom that went off without a hitch and a young man that proves time and time again that he has outstanding character.

HELLO - To a graduation and a party for my handsome amazing son Tyler. to phone calls from his future boss. to teaching him how to budget, grocery shop, and cook all in a few weeks.

HELLO - To rain this morning that will help me get the laundry done (otherwise I might just play hooky) and it also means i don't have to water my garden today either!

HELLO - to nap time. both girls are down at the same time and I am beyond thrilled

HELLO - baby squeals. Evie has started to chatter and make all sorts of delicious noises.

HELLO - to homeschool that works at the right pace for my very distractable young boy.

HELLO - to beach tomorrow with people that think like we do.

HELLO - to hot coffee now that I have a keurig (thanks again TracyB) no more barely hot coffe that has been sitting in the pot forever.

its a week of firsts and lasts and so many in betweens. I find myself emotional in so many different ways. I feel so blessed to have such a wonderful family. My kids are all so great.