Normal

Have you ever looked up the word "Normal" in the dictionary? There are a ridiculous number of definitions for a word I think gets misused way too often.

Personally, I think normal is all relative ... and yes, I said relative as in perspective not aunts uncles cousins etc - that's an entirely different story. ;-)

When we plan our lives, many think of marriage, a home, a career, children, etc.

I think everyone plans with the idea that things will all fall in line and happen according to plan.

We'll get married. We'll have our 4,5,6 kids. :-) They'll be bright and courteous. They'll grow up doing all of the things we did as kids and then they'll get scholarships to nice colleges and build lives and families of their own.
(Okay, so some of that is wishful thinking, but hey, dream big :-))

We'll have a nice normal family.

Then

Your two year old is diagnosed with a heart condition that limits his activities and puts him in and out of the hospital.
Your second child is born special needs and spends the first two years of his life almost completely deaf and on oxygen and monitors. He doesn't sit up or crawl or any of the "normal" things babies do for a very long time, he can only drink a special hypoallergenic formula from a bottle, and you are told that he is low functioning and you may not be able to expect much from him.
You find out that your life is no longer you own and you have inherited an entire battery of doctors, therapists, advisers, etc that for some reason now have the right to tell you how to take care of your children and monitor their progress.

So, what do you do?

You press on.
You become your children's voice when they don't have one.
You argue with anesthesiologists to make sure that the correct precautions are taken through each surgery.
You say "fine ... my son can't hear, but he can learn sign"
You give a zillion medicines at all times of the day.
You monitor their foods carefully.
You monitor their activity levels carefully.
You monitor everything carefully.
You get on a first name basis with all of the doctors & nurses you now regularly see.
You put up with all of the people who love to give advice and point out all of the things your child isn't doing or isn't allowed to do because they don't understand how all encompassing "medically fragile" is when it is a part of your daily life.
You take one step forward and two steps back.
You pray a lot.
You cry some.

Then you just love.

And slowly, you realize you are making progress.

Slowly meds start to regulate.
Levels stabilize.
Surgeries are successful.
Monitors and oxygen tanks get sent back.
Echo cardiograms come back with less activity.
Amazingly, ears open up and your child responds to sound.
One kids starts to run around and play with less risks while the other actually crawls.

It's a long road.
It is very rarely an easy road.
It is a road we will most likely always be on.

So why would I do it again?

For days like this:

Days where I see my eldest son climb a tree with his uncle.
Days where he rides down the road with friends on their scooters.
Days where he plays soccer in the back yard or jumps on the trampoline.
Days where I get to see my little boy be a little boy.
Days when I get to teach him how to shoot a bow & arrow just like my Papa taught me.
Days when he comes and asks to get in the bed with me for a few minutes - not because he is scared or anything is wrong - but just because he wanted to snuggle.

For days when:

I walk into my middle sons room and see a grin split his entire face as he greets me that morning.
I watch him sign an entire Signing Time DVD and hum along with the songs.
My son doesn't just spin toys on the sit & spin but figures out how to spin himself.
I am riding down the road and I can reach back and hand a french fry to my little boy and have him safely feed it to himself.
I hear my sweet little boy mimicking every sound his big brother makes in the bath as they sit in there together without my help, playing.
Making up new verses to "The Wheels on the Bus" inspires an entire hour of fun between brothers.
For days when I hear my sunshine sign and say "mommy" knowing it means me.




This is why I am a mom.

This is why this is all I have ever wanted.

This is why I continue.


I love you my precious boys.
Thank you for not being "normal."
Thank you for being so much more.

Finally!

Yea! CJ & Coeby's room is finally functional! :-)

This was really the last room to be attacked in our recent move because it didn't have to be done as soon as the others in order to be lived in. So, for the last couple months it has been just a place for CJ to sleep ...
Now, little brother has moved into his crib (Yea!) and the room has been cleared out and arranged as a safe area for the two little ones to play. :-) Yippee :-)


(I will be adding some things to the walls later, but for now this is a big improvement.)

Just in case you're wondering ... CJ's crib has something on it called a crib tent. This is to keep CJ from climbing out of the crib and getting into mischief during the night. He likes to stand in his crib and make faces against the mesh - much like a child pressing his face against a glass door or window. Silly boy :-)



Last but not least, I had to include a picture of Coeby in his big boy crib. No more bassinet in Mommy and Daddy's room. He has officially graduated to sharing a room with big brother CJ. :-) Yea, Brascoe!



(Now if we can just get him sleeping through the night, we will be all set.) :-)

He's a maniac maniac ...

CJ went officially nuts tonight. I decided to put him in the bath after Jason left to take T to VBS.

CJ loves the water, and so when I have the chance, I will put him in the tub with only an inch or two of water so he can play for a little while with less risk of going under water. I usually have to remind him not to splash out of the tub once or twice, but for the most part he is pretty good.
Tonight was a different story.
CJ went nuts! He was spinning in circles splashing with both hands and feet at the same time. He was going from one toy to the next and back again, trying to dump water over his head, standing on his head in the water (in the tripod position) and playing with his toys between his legs ... Oh, and did I mention he was also trying to blow bubbles in the water without getting his tongue wet. :-) LOL
CJ also decided to try to stand up on his own and transition from one side of the tub to the other while in the tub. We are trying to really encourage him to stand on his own without holding on to anything ... so of course, he does it in the only place I have to say "No, CJ!"

Meanwhile, I was sitting in the bathroom watching all of this with Coeby in my lap. He found his brother's antics highly amusing, and I think his laughter just egged CJ on. It was nonstop. I actually had to put a towel on the floor to catch any "waves" that came out of the tub. It really was hilarious.
Needless to say, once CJ got out of the tub, he had worn himself out and fell asleep in his little chair watching Wonderpets. :-)

back in the nest

T's home T's home T's home :-)

I'm gonna have to steal a snuggle with him tonight...

I am so glad he got to have adventures with the grands and his aunt & uncle, but I am also so glad to see him back home safe and sound.

All my chicks are back in the nest once more.
Yea!

God I love them!!! :-)

My Rubberband Boy

Well, a couple months ago we had CJ's fourth annual Geneticist appt. He did well and I believe they were pleased with his progress and our course of action regarding therapy etc.

During the appointment, I was holding CJ as usual and he had put his feet up by his face as he often does, so I was just holding him in that position ... when he decided to basically slip his upper body through his legs. CJ's geneticist ran to get her camera so she could take a pic of him to use with her students as she tries to explain how flexible some of these children are.



Since she was so impressed with that move we decided to put CJ on the floor and let him show her what we call his fussy position - i.e. the pretzel position he puts himself in when he is disgruntled and fussing.



He pulled it off "fussy" face and all. :-p
(He was tired, so fussy came naturally, but I think he was working towards his Emmy nomination too. All we have to do is mimic him whining and the lip comes out and he goes into pitiful mode right then and there. LOL ... and yes, Mom, I know he inherited the theatre gene honestly. :-p)

I had shared this story with a few, but asked the doctor to email me the pics she took so I could actually share them with you as well. The weirdest thing is this really doesn't hurt CJ - he can literally put his feet back there without using his arms ... and yes, it is as odd to watch as it sounds - especially when you glance back while driving and see your child riding in his carseat with his feet behind his head!

We have had him looked at twice by his orthopedist (x-rays and all) to make sure everything is where it should be, and he has passed everything. He just really is a "rubberband boy" as he has been nicknamed by his doctors...

Burgeoning Buddies

Well, T is coming home tomorrow and the house will be completely back to its usual chaotic state, but for now it is still just the two little ones.

Thomas and CJ really bonded during the time they were away at Maw & Da's while I was ill, and it hasn't always been easy for Brascoe to find his place in the mix - especially with me not being at 100% to ease them all into it - so, it has been kind of nice to have this time for CJ and Brascoe to get to know each other and figure out how to relate/play with each other.... At first CJ regarded Brascoe with simple disinterest, lately there have been signs of jealousy, but now we are really beginning to see the makings of two special buddies.

The only real bump in the road is - thanks to Uncle Trey, Goucho, and big brother - CJ still thinks floor play is all about wrestling, so we do have to watch out for him sitting on Coeby, but they are starting to get the hang of it ... even the sharing part :-)

Sometimes I don't even ask ...