Spring Break

We had spring break a few weeks ago. ( Ok almost a month ago!) Every time I sat down to write I would hate it, erase it and then go to bed. So now that MORE stuff has happened and I am behind here are some photos of our spring break.

Ty wanted to go down on his back but his legs were NOT having it. A few more scoots and he had it.

The play place was awesome. It was called playtopia. I was glad the boys had on matching shirts and were bright enough to see. It was hard to keep track of them.

Grayson is a bit... um daring. He will do anything that Ty does. He will also do anything he wants to do.

He is THE most determined kid I know. He tries SO hard. He is my hero!

And this kid, well he is a handful and we LOVE him. He is very independent, and very smart!

The love he has for anything that keeps him moving and life in general, makes me SO proud of him!

But this small bundle of energy is a crazy kid in disguise. The smile is deceiving.

Sweaty and hot, but happy and busy!

Before we made it to the park, we had a happy fun lunch with our dad at the Tempe Beach park. The boys fed the ducks instead of eating pizza. But Dallas and I enjoyed our delicious subways and sitting in the sun. Ty was determined that he was going to throw rocks but there wasn’t many. Next time we go, we will be bringing our own rocks.

Playtopia was a great place for us to go. I plan to take the boys back soon!

The Discovery Stage

The day of Ty's birthday I ran into a mom of a cute little guy that was in his class last year. C ( how we lovingly will refer to this cute boy!) has autism but is VERY functioning and VERY super friendly. Instead of transitional kindergarten he went to a charter school. I thought he was going to go to typical kindergarten. Anyway, I asked the mom how he was transitioning. Tears welled up in her eyes. She said he was struggling. That she was struggling. At that point I realized that we all need certain things.

The week of Tyler's birthday I always struggle. ALWAYS. While listening to a fire fighter from 9/11 he said " They say time heal all wounds. But it doesn't" and that is how I feel. While I didn't see the things they did, nor did I see the destruction that was seen, but I saw horrific things that don't go away when I close my eyes and that even 5 years later isn't healing. It is still raw. Only because the effects of what we saw and what came of the events are still coming up.

This week we had Ty's IEP and though his team is wonderful and really do have his best interest in mind, it stinks a big HUGE pile of manure. GINORMOUS pile of manure really. It is never a pleasant experience to see on paper where the world puts your kid. Generally, these manure meetings happen right around his birthday ( by law) and it really takes a toll on my spirit.

This year was his year to get his IQ and stuff put out there. THE WORST EXPERIENCE EVER. One paper says he sucks and then the testing for normal kindergarten stuff says he is average. While we rejoice on the average, the fact that he can't brush his teeth and has no self help skills makes him below average in the rest of the scoring.

The older he gets the more we find we will be doing for him for a lot longer than we had planned. The older he gets the further behind we seem in some area's. The older we get the more our life is different than the neighbors. The older he gets the more we realize he doesn't have friends like the others and we rely on family more than the average Joe.

But the older we get we realize he will never understand hate. He doesn't understand when people stiff him on his birthday. He doesn't understand when someone pushes him he is not suppose to be sorry. He doesn't understand when people stare at him that you are staring because he is "different."

He doesn't understand anything other than love.

Even when we listen to him being judged by "normal standards", we know deep down that he is smart, he is loved and he is and will always be innocent.

Dumbo's mom said " All of those people who scold you, what they'd give just for the right to hold you!" She was right..... she was VERY right.

Summer Days

Last night our toot face decided he didn't feel well. He had acted a little bit off for part of the day and it continued. About ten he started crying and Dallas and I brought him into our bed and Dallas took over the new twin bed. He gave T a blessing and Tyler was out before it was over. He slept soundly the rest of the night.

We decided to add Baclofen during the day as well as at night. So this morning I dosed it up, gave him some Motrin and waited. Of course in the mean time we cleaned, ( totally click... best new system. For the fly lady drop out!) showered and decided that we needed to go to the park and eat lunch.

We decided McDonald's would be the PERFECT place to get our "Pickik" ( yep you guess right... Ty said Picnic) and we headed to the park. There is a park in the middle of town that has lots of trees. It is also the place of said place of the Stitches incident. I was a little worried. But we got through it with VERY little.. actually NO tears ( if you don't include the ones where I would drag him into the bathroom so I could go... THANK YOU METFORMIN!)

So a visual of our day!

Lunch was "Craptastic" and Ty actually ate most of his. He also put a lot of fries in the dirt and I would cringe when he would lick it. The preemie mom NEVER forgets those germs!

Making him sit for five seconds at the beginning of getting to the park ensures that 3 bites of burger get in his mouth. He then took off with said burger to " play."

And he is OFF. He would walk a few steps then do this so he would be steady. He is having the HARDEST time staying on his 2 feet. ( for the CP moms... can you see how off he is. Those feet... YIKES!)

No worries though cause if we swing our body hard enough it goes wherever we want it to go!

And then that sweet boy comes back... just in time to get a cold drink because he is getting to hot. He would come back and say "two Hoot" and take a drink.

He is moving. Much more than we have anticipated it being.

And what better day in the park can be topped off with a trip to 2 crafts stores and .......

I
An shaved ice.......

I hate Cerebral Palsy

I have the MOST amazing child in the entire world. Everything about him is a miracle. He is fun, caring, loving, sweet, smart, adorably cute and a million other things.

I love that he LOVES Mickey Mouse.

I love that he has a favorite Blanket.

( This was NOT today... he NEVER naps unless he is sick.. he was sick a few weeks ago)

I love that he chews on the arms of Leo, Mickey and Barney.

I love that he says "I love you" in his own special way.

I love that he gives awesome kisses.

I love that he will only let me do certain things.

I love that he throws rocks any time he can.

I love that he LOVES his dad.

I love that he is learning to talk.

I love that he always wants to "help" do things that aren't "fun."

I love that he tries SO hard to do so many things.

I love that he gets up when he falls.

I love that he is strong.

I love that he has gone through SO much and yet he is still the sweetest thing in the entire

world.

But what I don't love.

I don't love Cerebral Palsy.

I hate that things are hard for him.

Days like today, when therapy is nothing but a scream fest and and that he tries to throw up to get out of doing what is hard.

I hate that they are hard.

Running, jumping and playing shouldn't ever be something a child can't do.

I hate that he can't ride a bike.

I hate that even Super man can't make an eye exam not be scary or sad or hard.

I hate that even some of his "family" won't take him and love him because he is "different."

I hate that there is something in his daily life that is effected by Cerebral Palsy.

I hate that as a mother I "MIGHT" be missing something that could "fix" something. Or try something. Or afford all the types of therapy that "could" help.

I hate that I still feel guilty about not being able to carry him to term.

I hate that he doesn't know what a bird looks like in his back yard because of his disability.

I hate that I have to sit by Day after day after day and see him have to get up time and time again because his cerebral palsy makes him fall.

I hate to sit by and watch that it is hard for him.

I hate Cerebral Palsy