Homecoming Day - Part 2

Today is Ja.son's Homecoming Day! On this day 8 years ago, after 100!!! long days in the NICU, we finally got to bring Ja.son home!



Ja.son was actually the one who was going to come home first. On the day of his would-be discharge, he spiked a fever, had a grand mal seizure, and was bagged for 20 minutes while they tried to figure out what was going on in his little body. We had received that call, the one that NICU parents dread, only twenty minutes before, and I remember staring at my boy with a terror and hopelessness I hope to never feel again. He was a very sick little boy, and we were again scared that we might lose him. We definitely could have.

Those moments made this day eight years ago, when we were finally free of the NICU forever, even sweeter. Our family was together in our own home. It was another glorious day!

This day is another special occasion in this house, and like Sh.awn's, I hope it is something we can continue to celebrate forever. :)

#Microblog Monday

"Mom, why are my legs on backwards?" he asked just after dinner.

I stopped what I was doing and looked at him. "What do you mean your legs are backwards?"

"That's what Daniel asked me. He wanted to know why my legs were backwards." He looked down. "It sort of looks like they are. See?"

"Babe, your legs are not backwards. Your legs are just the way they are supposed to be... What did you say to Daniel after he asked you that?"

"I told him I was born very early and my brain got hurt and that now it takes a little more concentration to get my legs to do what I want them to do."

"That's a really good answer, Jay. What did he say when you told him that?"

"He didn't say anything. It was time for recess anyway. We went to go play basketball." He turned away then, picking up his police car as he started making siren sounds. It was clear our conversation was done.

He didn't say anything more about it the rest of the evening, yet I can't get the moment out of my head...

Sigh.

~~~

Stop by Mel's for more #Microblog Monday posts.

Ja.son's Day!

7 years ago on Thursday, after 100 days in the NICU, we got to bring our Ja.son home. I gave him the choice of celebrating his day on the 4th, his actual Homecoming Day, or today. He chose today so he would get the full benefit of his day. I'm fairly certain he got his money's worth by waiting. :)

 

 

Ja.son took full advantage of his day. He chose a breakfast of pancakes with whipped crème and chocolate chips.

It was raining out today, so like his brother, Ja.son chose to hang out around the house.

 

He picked his favorite movie, the Lego Movie, to watch and controlled the television all day long.

 

 

We played a LOT of Draw Something (and the iPad) today, too.

It was no surprise when he wanted to have pizza for dinner. Our boy is a huge fan of pizza!

 

Then after he blew out his candles and ate his cake, he played cars with his daddy.

 Happy Homecoming Day, Ja.son! Hope you had a great day!

#Microblog Monday

Today the big boys go back to school after a three week vacation. It's been a nice break, but unfortunately, it's been long enough for us to get out of our routine. Yesterday at lunch we talked about finally getting the chance to go back.

J is nervous; his stomach hurt last night, a symptom of his worries. He was almost as nervous as he was before the start of school. Thankfully, he seems a little better this morning. Excitement has mixed with the nerves now.

~~~

Sh.awn was visibly upset yesterday while we talked about returning to school. He knows he'll be working with his new aide, and he struggled with the emotions of the new situation. For the first time, S's old aide, whom he LOVED, will not be there today.

"But why does she not want to be with me any more?" he asked. "Is it because I wasn't good?"

Oh man. Talk about ripping my heart in two.

Of course I explained again that this change had nothing to do with him. I even reminded him of his new aide and talked about how nice she is. He said he understood, but still.

My heart aches. My poor boy.

For him, this change is nothing less than a break-up, one in which he had no idea was coming until it happened. I'm sure it's hard for him to take it any other way than it was something he did when things like 'higher pay' means absolutely nothing to him.

All he cares about is that a person he loved left him.

He didn't say much about it when he woke up today. I didn't bring it up with him either. I know he knows, and I don't want to set the course of his day negatively because I upset him before it started. I simply kissed him on his cheek and wished him a good day like I usually do before I head out to work.

I hope that his day goes well. I hope that he is reminded how kind this new aide is. I hope he quickly learns to love this aide. It won't replace the loss he feels about his old aide leaving, but maybe it will help ease the sting.

Stop by Mel's for more #Microblog Monday posts.

The Boys Are 7!

The big boys turned 7 on Monday. It truly blows my mind. 

Ja.son

Sh.awn

They are so big and smart and funny and amazing--everything I was afraid to wish they'd be when they were tiny premature newborns. I am beyond proud of how far they've come. I know they'll accomplish great things in their future, too!

I am always taken aback by how much the drama behind their birth still affects me. The stab of emotion isn't as strong as it used to be, nor does it last long, but I'd be lying to say that it isn't still there. Even with all of the good that we have in our lives, there is still that small twinge of sadness about what might have been.

Bittersweet

Ja.son has slowly adjusted to life without his glasses. He struggled the first day. He asked for them once the second day. Today, he didn't ask for them at all.

Sh.awn, however, is still struggling with the change. He frequently reminds Ja.son to go get his glasses. He argues with Jay when Ja.son says he doesn't wear them anymore. I guess it makes sense; Sh.awn is the one who saw the glasses all the time. It must be so strange to see such a huge change in the familiar face.

As much as I hate those glasses, I must admit that this new milestone is a little bittersweet for me. The glasses were a visual link between the boys, a small sign that yes, they are more than brothers when there is so little else that implies they are twins.

Sure, they still have a few parallels to their lives. The CP is one. When they are both in their walkers, it's obvious the two of them are connected in some way. But really, that's the end of their similarities.

The boys have always been very different. Aside from the brief time during their very early days, they look different. One is tall and lean with a mass of coarse, thick hair. The other is more average in size with fine, straight hair. They have always been different in their strengths and interests. One likes numbers and math. One likes to read. Their differences go on and on, and for the most part we celebrate them as individuals.

The differences ended when you looked at their faces; the glasses and even their scripts were the same. They both had them, one of the few remaining things they still shared. To some extent, the glasses became a symbol of their twinness.

Each is his own person, yes, but they will always be twins.

I've always thought that being a twin is something interesting and unique. I hate that this feels like yet another way they've been cheated from the specialness of their birth.

I don't know. Maybe they could care less.

Maybe this is something that bothers me a whole hell of a lot more than it will ever bother them.

As much as I am happy that his eyes have done just what we wanted them to do when he first got his glasses on his first birthday, and even thought it may be silly, there is that part of me that is feeling melancholy nonetheless.

Mostly Wordless Wednesday

Notice anything on that beautiful face?

Come on. Look again.

That's right, you don't! Ja.son isn't wearing his glasses!!

After 5 and a half years, Ja.son's vision is now within normal limits. For now, he no longer needs to wear his glasses!!!

We have a recheck in six months to see how things stand with his vision. Until then, we were told that he gets to be glasses free* unless we noticed his eyes turning. Woo to the double whooo!

Sh.awn's vision has also dramatically improved. Technically his vision is fairly close to normal as well, but his right eye did turn in (then quickly self corrected) when his glasses were off. He's going to keep his glasses for the time being to hopefully allow his eyes to continue to strengthen.

So take that prematurity. We hereby declare vision victory over your miserable behind!

*Poor Ja.son has worn his glasses since his first birthday. He knows nothing else. It has been an interesting day for him to say the least. It took him several hours before he was ready to give me his glasses. It's hard to just drop something that has been such a part of your life for so long. Then, once they were off, he cried a bit as he worried that everyone would laugh at him without his glasses. (How's that for a twist to the usual story?) This being glasses-less thing is going to take some getting used to for all of us, most especially him.

It's odd that this one little change can make him seem so different to me.

Kindergarten Drama

For once, it's the innocent kind.

At drop off today, the boys' teacher told Is.aac she had to have a talk with the class about not kissing at school. The new directive is that "we only kiss our family." 

Why you ask?

Because Layla, a little girl who seems to be Ja.son's biggest fan (his words, not mine), was kissing on my boy at recess, of course.

I'm dying here! Lol!

Apparently it was all very innocent, and Layla was heartbroken that she had "broken" a school rule.

Ja.son, on the other hand, had no idea why the teacher talked to them at all. I asked him if anyone was kissing at school. "Mom, that's silly." was his reply. He's such a clueless boy!

"Do we kiss anyone at school, Jay?"

"We only kiss family."

Lol. I suppose it will be interesting when my boys start kissing each other. Hey, they're family, so it's allowed! I bet the teacher hadn't considered that one.

~~~

I had to laugh when Is.aac sent me a text later in the day bemoaning the fact that he had passed on his school boy curse to his children. He had a rough time in elementary school himself because all the little girls would stake their claim and harass him. "You know, Stac, those little girls can't resist the (our last name) looks and charm." LOL.
 

When We Do Things, We Go All Out

So how many people do you need at a kindergarten IEP meeting times two? Let's see...

1) Kinder teacher (for S and J)
2) principal (for S)
3) vice principal (for S and J)
4) psych (for S and J)
5) OT (for S and J)
6) PT (I have dubbed her Bitch 2. Ahem. for S and J)
7) Speech (for S)
8) Vision specialist (ended up being worthless - for S)
9) Resource Teacher (who will take over as case manager - for S and J)
10) Behavior Specialist (for S)
11) Behavior specialist's administrator (to write the behavior goal - which he's already met, but we're leaving for the year just in case - for S)
12) nurse (Behold Bitch 1. Double Ahem - for S and J)
13) district special ed coordinator (for S and J)
14) OI specialist (from district level - for S and J)
15) some other lady who I can't even remember and I'm too tired to go look - she was district level, though. Not sure how. The district was totally out of compliance in a big way, so she was making sure they stayed in compliance now. (for S and J)
16) my husband
17) me

It was INSANE.

INSANE.

Total meeting time for both was 3.5 hours. Sh.awn's was at least 2.5 hours. Maybe more. Ja.son's was under an hour, I know for sure.

I tell you, when we do things, we go all out. There's no half-assing it around these parts, no sir.

Sigh.

There was so much info, and while I'd say overall it was okay I guess, there were some things that are bugging me and I'll need to address. Some of the assessments were done when Sh.awn was struggling so much and are basically invalid (and wrong in some cases) in my opinion. I still have to figure out how I want to handle that.

 

I think they are well intentioned for the most part. The principal redeemed herself somewhat. They are going to make actual modifications to the kinder room (new faucet and adaptor for the toilet) to allow Ja.son to be completely independent. Two, the nurse and PT, did piss me off, however, so they are in my watch list. I asked Is.aac if he got the same vibe from them, and he agreed that they were just plain bitchy. I may have got a bit sarcastic and said that perhaps his father and I have a better understanding of our own child than they did and to back the fuck off. You know, minus the fuck part because I know how to be civil.

 

The thing that upsets me most is that he was assessed at the start of the school year when he was having all kinds of behavior issues. That reflected in him not cooperating in some of the big testing (IQ for one). Sigh. He is a different kid in school now, so they'd get a totally different picture of what he is capable of doing if they did the testing now. In fact, they had to rewrite just about every goal they came prepared to offer because he'd already reached them or was just about to all on his own just since school started. (which...um, underestimate my boy much?)
 

We didn't sign anything yet. (They practically crapped their pants when I told them we'd not sign and were taking it home to discuss in private. lol) We'll get our copies tomorrow (they had computer issues and the program kept freezing). Is.aac and I will take the weekend to talk it out with each other and see if there is anything we'd like to tweak.

Sigh.

I'm exhausted. My brain has been fried.

 

Oh, I am not proofing this, so forgive whatever errors you see.

IEP Tomorrow

Our IEP meeting is tomorrow.

I'm overthinking it, I know, but duuuuudddeee. No one wants to go into a meeting to hear about her children's shortcomings. It just plain sucks.

I want to go in there and be pleasantly surprised about how supportive everyone is. I want to hear how they think my kids are awesome and how they can't wait to get started helping them achieve and thrive at school.

I suspect that it won't go that way. I'm 85% certain that I'll have to fight. I'm not feeling like I am at the top of my game so having a fight ahead of me is just overwhelming.

I'll just have to see how it all plays out.

I hate not knowing. Sigh.

Is.aac and I have talked; the plan is set. We'll go in with me being bad cop, and him as good cop. (He's the one who will have more contact with them with drop off, etc.) We have a signal to let the other know our thoughts without saying.

Sometimes I wish I drank alcohol. This would be one of those times when I could use it.

They're SIX!

Today my boys turn six years old. It's unbelievable, really. It seems like just yesterday they were born.

~~~

Goodbye to FIVE, the year of:

• Starting school
• the never ending Sick
• 5 lost teeth and visits from the Tooth Fairy
• playing in the mud, dirt, and sand
• swimming therapy
• learning to read and write
• crafts
• trips to Disney, Sea World, hotels, and the zoo
• big boy beds
• finally putting those pull-ups behind us
• disabled parking placards
• hugs and kisses,
• and so much more!

Five, oh five...this has been a magical year.

 

 

Happy Birthday, Shawn and Jason!

I can't wait to see what year six has in store for you ... and us!

Mostly Wordless Wednesday - Makes My Heart Sing

He's been practicing, which is definitely not something he wanted to do before now.

He was always so afraid.

Lately, though, he's changed. He wants to practice.

And when he does, it makes my heart almost explode from my chest in happiness.

My eyes instantly flood with tears.

I bet you can totally understand why when you see for yourself. :)



It makes my heart sing! I'm am so proud of him!!!

More

It started off innocently enough. We had just started out on a thirty minute drive on our way to the boys' swimming therapy.

"Mommy, look! That man has canes!"

Sure enough, he did. He's a neighbor, who lives a few streets over from us. We've passed him many times before, but today it finally clicked in his head.

"Why does he have canes?"

I thought about it for a few seconds before I answered simply that it was because he used them to walk.

"Why?"

"I'm not sure why he needs the canes to help him walk, kiddo. I think it's pretty cool that he is walking with them, though. Don't you think?"

"Uh, yeah..." he said. Then he added, "Why do I need a walker to walk?"

There it was.* I don't know why I am always so unprepared for this type of question. It isn't like I shouldn't know they are coming my way. But to be honest, he has never really asked me why he doesn't walk. He doesn't see anything wrong with not walking without his walker, I do know that. For him this is normal even though he knows other kids do walk without walkers. (Hello, he has the constant reminder of Jack to help with that.)

Both boys know they have CP and have a vague sense of what that means. I've told them about being born premature (although Ja.son does NOT like talking about how he was sick and in the hospital for a long time. He wants to talk about his life once he was home) and their rough beginning.

Still neither has ever asked for more about the differences, namely their lack of walking.

The plan has always been to follow their lead on things. We'd wait to really talk about CP and its implications for their lives when they wanted more.

Today was a day for wanting more.

More they got.

I hope I did it justice.

~~~

*Why don't they ask these questions of their father?!

I Have a Lot to Learn

Every week at therapy, we park in the exact same spot, right next to a disabled parking space. Ja.son, who is a sign reading maniac, tells me what on that sign once we park and again as we leave every single time we're there.

"Handicap parking, mom. We need to save that space for someone in a wheelchair," he said for what seemed like the millionth time.

To say he may be obsessed with these signs is an understatement. He looks for other handicap parking signs while we are out around town, never failing to point at least one out in every parking lot we enter. He's even started incorporating these parking spaces into his endless hours of Hot Wheels play.

"Yes, we do, Jay." I told him like I always did as I pulled into our regular spot.

Usually, that is where the conversation would end. This afternoon, though, our talk took a slightly different turn.

"Mom, when I get home I'm putting my handicap parking spaces at the end of the parking lot so my Honda Pilot can park right up front."

"Well, Jay, disabled parking spaces are usually the spots closest to the doors of the building."

"Why?"

"If someone has a hard time walking, the spaces let the person park closer to the door of the building. That way, the person doesn't have to walk as far to go inside the business."

"Well, why don't we park there then? I can't walk."

Oh. My. God. My heart dropped and shattered at my feet. The water bottle that was headed toward my mouth at that moment literally stopped midair, my mouth agape. My head began to pound as I struggled for something to say.

My first instinct was to change the subject--I so did not want to have that conversation yet. He remembers everything I've ever said...if I misstepped, how would I ever be able to make my words right? I knew that what I said in that very critical moment would become part of the foundation for how he feels about his own abilities, and the weight of that responsibility was heavy on my heart.

How could I let him know it was alright for him to need a disabled parking space when I was still not sure I was alright with the idea of him (both of them) needing it?

The seconds ticked. After what seemed like ages, he said, "Is it because I can walk with my walker?"

"Babe, mommy and daddy carry you if you or Sh.awn get tired. Plus, you two are getting stronger every day and are getting so good at using your walkers. To be honest, I didn't think we needed to park in a disabled parking space. What do you think about it?"

He thought for a bit and mulled it all over. "I don't think we need to park in one right now, but it would be neat to be able to park close to Disneyland." With that, he was done talking and ready to go in to therapy.

~~~

For him it was over, but I can't get what he said out of my head. I've replayed it over and over again trying to decide what I could have/should have done differently. I keep coming back to the same idea: I don't know whether what I said was the "right" thing or not, but I do know I am so proud of my boy. To him, things just are what they are. So he needs a walker. Who cares? So what if he needs to use a disabled parking space? It's no big deal to him. 

Why do I let it be?

If he can be comfortable with his body and his walker and using disabled parking, why do I find myself still struggling?

I have a lot to learn.
 

But if I think about it, when it comes to this amazingly insightful boy I have, I must be doing something right.

Morning Conversations

I'm sharing this on the boys' blog later today, but it was too cute not to share here, too. :-)

~~~

Overheard in our bedroom at the crack of dawn this morning...

J: (whispering) Shawn, come here.

S: (whispering) Are mommy and daddy awake yet?

J: No. You go to the left and wake up daddy, and I'll go to the right and wake up mommy.

S: But I want to wake up mommy.

J: No, I do.

Daddy: Shhhh...

J: (whispering again) You're supposed to go wake up daddy.

S: Awww...I'm so justappointed. (my guess is this meant he was "just disappointed")

J: Ok. You go wake up mommy.

~~~

And so the conspiracy begins...

Wait. Who am I trying to kid?

The conspiracy continues!

Our Wish

Our wish for Shawn and Jason...



Such a fun year. Can't wait to see what year 6 brings us!

Happy Birthday, Sh.awn and Ja.son!

Today the dynamic duo turned 5.

FIVE!

This morning they both got into bed with us for a little snuggle time. I asked them if they felt any different today, now that they are FIVE. Sh.awn gave me a dismissive "uh huh," but Ja.son thought about it for a minute before he answered.

"I feel bigger," he said.

Oh, how right he was.

I'm not sure how it happened, but my little preemies are bigger now.

They are more of everything now.

These two pound miracles are stronger, more determined, smarter, funnier, sweeter...

more amazing than I could have ever dreamed possible.

They've brought so much light into our lives, changed us in so many wonderful ways. We are incredibly lucky to be their parents.

I can't wait to see what our future holds with these boys and their brother in it!

 

Sh.awn - 5 years old!

Ja.son - 5 years old!

Sh.awn's giving us the high 5!

It's a 5 for Jay, too!

Happy 5th Birthday, Sh.awn and Ja.son!

Mostly Wordless Wednesday - Parenting Fail

I generally consider myself to be pretty on top of things having to do with the boys. Imagine my surprise, after looking in his mouth twice a day, every day, Is.aac called me over this evening to look in Ja.son's mouth. I saw this:

I swear I just about fell over.

(Then I might have had an internal freak out over what those big teeth behind those baby teeth will likely mean. After which I may have just about snapped his head off while I desperately tried to see if there is anything I missed on the top. Thankfully, there isn't. Sigh. I was somewhat relieved to find that one of the teeth is slightly loose until I realized that the other isn't budging at all. Damn.)

How the hell do two teeth grow in that much before I even know it...when I look in his mouth two f-ing times a day?!!?

I don't know.

I guess I get to call a dentist tomorrow. Whee!

Parenting fail right there. Lol.


In my defense, the boy won't even be 5 for three plus more months, so I wasn't even considering there would be teeth issues at this point. That's something, right?

So Proud!

Ja.son finally got the chance to take out the new wheels for a spin. He made it about a quarter of the way around our block before needing a break. (It took Is.aac and I just under 10 minutes at a decent pace to walk 1/2 around it while pushing the stroller/carrying Ja.son.) After he rested some, he managed the last 1/4 of the block, too.
So proud!



Yeah, I'm cool with my new wheels!

Walking around the 'hood gets a thumbs up!

Taking a break to smell the roses. :-)

~~~

AND Jack added two spoken words to his vocabulary today ("yay" and "all done"). Does it count as two words when he signs and says the same word? (He doesn't say the word when he signs it, it's either one or the other.)

The Weekend & Some Other Odds & Ends

• The party was a success. We had over 30 people here. The boys were rock stars. Food was great. Cupcakes were awesome. Yea!

He liked it!

• Poor Jack was a trooper. He came to me on Friday, spit blood at my feet, and proceeded to the carpet to lay down. All I could find is a molar had finally poked through the gums.
• On Saturday, a canine tooth on the opposite side was just about to break through the gum. The molar on that side was also swollen and red. (The canine broke through the gum today.)
• He was miserable with out his feel good juice. Thank goodness for our Tylenol equivalent!
• MIL, a not quite yet Jehovah's Witness, annoyed me by not bothering to even show on Saturday. She has managed to attend other birthday parties. Ugh. I am sort of over JW thing.
• Thank goodness I had this last week off to get things done. I would never have made it without having that week. Dude. I now remember why we don't throw more parties!
• I am still exhausted. And my hips hurt. Had to take a pain pill yesterday to help dull the pain enough for me to sleep. Will probably take another one tonight. Boo. I guess it is time to see a chiropractor soon.
• I have decided we need to get ourselves a maid to keep up with the regular cleaning. I just can't keep up with everything with work and the boys and everything. I have to tell you when given the choice to do something for the boys, or on the rare occasion do NOTHING, or clean the house, cleaning the house will always lose. I can't even tell you the last time I thoroughly cleaned the house. Maybe before Jack was born?
• Yes. Apparently, we are filthy pigs.
• No, we probably won't get a maid. A girl can dream, right?
• Jack had his one year appointment last week. 32.5" long. 23.14 pounds. The boy is big.
• He got three shots. He also peed on the nurse and doctor a total of three times. I think that was a fair trade, don't you? (It cracks me up that he got them three times when I haven't been peed on since he was less than a week old, and even then it was only one time!)

• We had a lovely Easter. The boys are at such a fun age. I'm loving this parenting thing. (I'd love it more if I could get Sh.awn to stop screaming, though. Jeez.)

• One more week of spring break. I think I am going to soak up as much relaxation as I can during this precious week!
• My Blogoversary is on the 15th. 5 years! Whoa.
• My birthday is on the 18th. 40 years! Double whoa.
• I'm freaking out about turning 40. Like a lot. Ugh.
• Not freaking out so much about the Blogoversary though. Go figure. :-)