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 ...

Raleigh

Jason had a business trip that took him to Raleigh Monday-Thursday, and with Thomas in Atlanta, Maw and Granny decided they would be super sweet and keep CJ and Coeby so I could go to Raleigh with J and try to catch up on some much needed rest.
It was so nice.
I couldn't check in the hotel when we first got there (We got to Raleigh about 10:00am and I couldn't check in until 3:00pm), so I hung out at the Barnes and Noble a couple blocks from the hotel for a few hours. I think my dad felt bad I was 'stuck' there for so long. He asked me "What are you going to do at B&N for 5 hours?" and all I could think was: "me ... stuck in a store full of books... Heaven." :-)
I actually ended up taking all of Thomas's work for the year with me and averaging grades, etc, so I could send in my end of the year report. I was both pleased and a little surprised when T ended up with all A's and one B ... (I had been a little worried he would end up with a C in writing, but when I averaged all the numbers for the year, he squeaked by with a B-) Yea!
Jason had a meeting reschedule and got to come meet me for lunch and then take me to the hotel - which was nice because the only thing I wasn't looking forward to was hauling my huge bag of schoolwork up the hill to the hotel. The hotel room was a little small but it had AC and it was quiet which pretty much made it wonderful. :-)
Jason had meetings most of the week so I spent my days at the hotel. I slept in, I went swimming, I took naps, and then I went out with J and a group from his work in the evenings. It was very restful but also very weird. I can't remember the last time I went swimming without a kid attached to my hip, and here I was not only childless but completely alone in a swimming pool! After walking and swimming laps, I couldn't figure out what to do with myself. LOL :-)
Meeting Jason's colleagues was also interesting. There was one from Chicago, two from London, and his boss who lives in Belgium. The group had a lot of personality and shared a lot of humorous anecdotes from the different offices.
Jason's boss really likes sushi and had gotten Jason to try it when he was in Raleigh a few months ago. Well, Jason loved it too, and now the group goes every time they are in Raleigh. So ... I ended up at a Sushi place Wed. night, and yes I tried sushi. Sorry, guys, but yuckyuckyuckyuck. I'll stick to my cucumber salad next time. :-) I am just thankful I didn't gag in front of J's co-workers. Oh well, at least I can say I have tried it.
Thursday I got to hang out at B&N again for a few hours while Jason was in meetings before we headed home. (I had to checkout of the hotel by 12:00pm.)
We got in late last night and I got CJ and Coeby back this morning.
So, things are pretty much back to the norm around here - well except for T being gone until Monday - but I really did appreciate the rest and the time with J.

Thanks Maw & Granny!

a colorful first impression

So, Leah and I took CJ and Coeby swimming with Jenny's group on Friday. It was a lot of fun, but Cj managed to get a nip in before I could catch him. He is really biting these days. It is hard trying to teach him not to though because I really don;t think he is doing it intentionally. It is more like a venus flytrap - if something brushes his mouth in any sort of sensory stimulation - it snaps shut. Anyway, I was juggling the wiggle worm in the water and one of the many times I tried to keep him from diving in head first, I got my mouth too close to his mouth.
It really wasn't that bad. It didn't break the skin and really was like a puppy nip, but thanks to my blood disorder and all of the meds I am on right now, I now have a huge bruise on my arm that is turning all sorts of fun colors.
Normally I wouldn't think twice about it, but I am supposed to be going to Raleigh with Jason on a business trip tomorrow, and I will meet his boss and some of his co-workers while there. All I can think of is - I hope we meet in places with low lighting because it is just too hot to wear long sleeves. At least I wear long skirts all of the time, because if they could see my legs too, they would really think I was the battered wife. I bump into anything these days and next thing I know I'm turning colors - it really is weird compared to what I was used to before my illness.
Oh well, maybe I'll get lucky and they just won't notice ....

Geography Needed

When you have a child that really does know a lot and often talks older than his years, it is sometimes surprising when his true age shows through.

Thomas soaks up information like a sponge and remembers even more, so I sometimes forget there are some simple things he hasn't yet learned in depth or at least hasn't fully retained.

Thomas is camping in NC with Maw, Da, and Granny this week. This morning they decided to ride up to Dollywood in Tennessee for the day. Thomas's response was evidently: "Tennessee? Do they speak English there?"

Yikes! Looks like I better add Geography to the list of subjects for next year... :-p

Oh, What a Big Boy Am I :-)

Sweet Memories

I think it was in middle school the first time I really remember realizing that I had certain sounds and types of lighting that reminded me of my grandparents homes.

I remember occasionally waking up at home in my bed early on a Saturday morning, and the way the light was just beginning to filter in through the blinds would make me think for a minute I was in Orangeburg at my Gram and Granddaddy's, waking up in the blue room.

Mama and Papa's house had a heater you could hear kick on and window air units that always created that constant background of white noise. I had forgotten about this until this weekend when some sweet friends let us use a window unit of theirs to put in our MBR while we are without AC. Jason hooked it up Sunday night, and as I woke up Monday morning - in those moments of half consiousness - I was lulled into that peaceful joy of waking up at Mama's and Papa's once more. It is hard to explain how much feeling that again meant to me.

I have gone to bed every night since thinking of them and all the nights I spent at their house ... and looking forward to waking up each morning to the wonderful memories a simple window air unit has brought back.

My Sunshine

You are my sunshine, my special sunshine.

You make me happy when skies are gray.

You'll never know, dear, how much I love you.

God, watch over my sunshine today.

One of the guys

One of Jason's favorite forms of stress relief is video gaming, and Thomas has really enjoyed learning to play some of the games with his daddy as he has gotten older.

They don't necessarily get to play very often, but T definitely looks forward to the time they get.

I couldn't resist taking these pics when I saw them playing the other night. I had to run to the bathroom, and when I came back, Coeby had become "one of the guys." :-) I think he was even giving playing tips in the last pic. LOL

Dreamnight at Riverbanks Zoo

Dreamnight at Riverbanks Zoo is an annual evening of fun for disabled and chronically ill children and their families. The theme was an undersea theme and the enitire zoo was decorated for the occasion - even inside the animal exhibits! They had activities, a free dinner, and even some animals walking around with their trainers. I'm talking owls & hawks, people - not tigers :-p. CJ's favorite were the silver "jellyfish" walking around the zoo. :-)

I was a litte apprehensive going into it - especially since we had all just started feeling better, but it turned out to be a really nice night, and we got to catch up with friends in the DS community we don't get to see very often. :-)

"The Screams"

Well, we have definitely been under the weather as of late, but thankfully we all woke up feeling better on Friday and have been doing okay since.

Maw and Granny - being sweet grandparents - asked Thomas how everyone was doing at the end of the week.

He replied: "Well, I'm better and CJ is feeling better, but Brascoe still has the screams." LOL

So, now you know how he sees his very vocal baby brother. :-)

Cooling off

So, what do you do when it's as hot outside as it has been and your airconditioning doesn't work?

Answer: You get creative.

We were all hot, and the boys were restless, so I decided the next best thing to taking them to the pool - which wasn't an option then - was to run some cool water in my garden tub and let them play in there for a while.

As you can see, it worked for them. :-)

Wiped out ...

Virus ... round two?

Well, I was thinking that we were all better this weekend. Everyone actually felt pretty good on Saturday and it seemed we were over the hump until ...

Brascoe missed a dose or two of his reflux medicine over the course of being sick and has been spitting up his bottles for the past day or so. (It takes about 4 days to get him back on track after just one missed dose.) This combined with his low appetite means he is taking only about a third of what he usually does per feeding, so I am really having to watch him to make sure he doesn't get dehydrated. As of this morning Brascoe started with loose diapers too so there is one more concern. Hopefully this will pass quickly and be the last phase.

CJ had a couple of good days but started acting like his mouth was hurting again Sunday afternoon and would not eat. Motrin is not helping very much, and I would say the only thing I have gotten in him (other than milk or juice) in the past 24 hrs has been some yogurt and some vanilla icecream. CJ also started with the bad diapers this afternoon. He gets dehydrated very easily so I am back to holding and bottle feeding him to make sure he stays hydrated. Say a prayer for that as he is pretty pale this afternoon.

T seems completely back to normal. :-)

The Silver Lining

As much as I hate the boys being sick, there was something nice that came out of last week's illness. Our week suddenly had a lot of freedom to it. T had finished school, CJ couldn't have therapy, and we had no appoinments ... so I actually had a week where we could do whatever we wanted to whenever we wanted to. We could sleep in if the boys needed it. They could all take naps without me having to wake them up. We even took a couple days just to grab some milkshakes and movies and go to Aunt Jenny's and hang out since her kids were all sick with the same thing - granted this was more of a laying around low tone day instead of a play day - but it was still something we don't get to do much in our typical week.

I realized the other day as we finished up T's school year and counted down to summer that I was thinking of summer like it would be this huge wonderful break ... and then I thought again ... yes, T would be out of school which is nice, but CJ will still have 4 therapy/EI sessions a week plus any of the kids' doctor's appts. Not that I don't love CJ's therapists and not that I don't think CJ gets a lot out of these sessions, I guess I was just lamenting the fact that the only time we get "normal" weeks is if we are out of town or sick.

Sometimes I just wish we had a little more freedom to plan our days and the kids had more days to just be normal brothers without being reminded of their differences.

Okay ... enough lamenting.

Back to the regular schedule

Well, I think the boys are finally over their nasty virus. Once all three had it we figured out that is was a virus that mimicked strep - so we had fevers, low appetites, sore throats, headaches, and a lot of tears. All of the boys were feeling better as of Saturday and the doctor said they should no longer be contagious. Yea!

CJ does have me a little concerned though as all of a sudden he did not want to eat anything again yesterday (including bananas), and he cried an awful lot. I can tell something in his mouth hurts him but can't get a close enough look to see what is going on. I guess we will see how today goes and go from there.