Monday, August 20, 2012

I'mmm BaCk

The waves are crashing into my face, instead of the suffocating feeling of swimming with no air. So much anxiety swirling around mixed with uncertainty. Gonna try to type it out and see if that creates a nice therapeutic sound sleep. More to come, exhausted tonight, need to veg and not think!

Tuesday, October 4, 2011

I can see clearly now

Driving home from school today Bella notices a large American Flag flying from a car dealer ship and tells us with excitement "An American Flag, look an American Flag. I can see it. My eyes are working now!"
Remi says, "Your eyes are perfect now?"
Bella "Yes, my eyes are perfect now. Hooray!"

Wednesday, September 21, 2011

Who do you belong to?

I pick Remi up from Preschool today and we immediately go into the parent room to play trains.
Right away he starts picking his nose and I make my face to tell him to stop, but he informs me in his matter-of-fact way.

"Mom I couldn't pick them in school, but now I can and I have missed my boogers and they have missed me."

What?! How do you argue with that?

Tuesday, September 6, 2011

My Blue Butterfly

I know it's been awhile, but by the time I get the kids to bed, I am so exhausted I crash into my own bed. Not that I fall fast asleep, but at least I try...

I have been having the worst nightmares lately, mostly due to the wonderful pregnancy hormones and my overactive imagination, but the troubling part is about every other night I am having dreams about Bella dying in some weird and very possible way.
I usually wake up gasping, nauseous and unable to go back to sleep. So that is keeping Bella and her issues on my forefront (like they are ever anywhere else?!).

As her sixth birthday is rounding back around again, talk has been going to what she would like for presents, decorations and party guests. She changes her mind constantly between Wow, Wow, Wubbzy and Peppa Pig. Both are NickJr shows that she can't go a day without and both are difficult to find and expensive to purchase (that's my girl!).

Searching for Peppa Pig stuff the other night, suddenly got me so depressed and anxious that I had to stop my search. The things I found were too small in size,both for play (visual and fine motor) and for wear. Then I thought she might like a new backpack for school, but since everything was based around baby-like toys, I begin to wonder if she would only get made fun of by other kids if she had a backpack from a toddler show when she starts 1st grade next year in a public school.

And it's more than just a silly backpack that has me worried. Bella remains such a mystery with her social interactions and play skills. Will a new group of kids give her the chance she needs to adjust before writing her off as "too different" or will a new teacher understand how to overcome her obstacles with a classroom of other children demanding attention?

After school today was our bi-weekly appointment for her infusion at the Hospital. This is something we have been doing for five and a half years straight and I swear each time is continuing to get worse for fits and screaming. Today might've been the tops to any day.
We have the same set of nurses each time and Bella is spoiled beyond belief with snacks, movies, activities and freedom. Using their computers as her "office", having her own mini DVD player to watch Wonder Pets, chocolate milk, Teddy Grahams, chips, Popsicles, coloring, play rooms, etc.

Thank God for her speech, but today it was breaking my heart! When the time came to administer her medicine through her port she starts screaming and throwing her body around so that neither her Nurse or I could control her. Yelling at the top of her lungs, screaming for us to "go away", "stop hurting her", how terrible we were, "leave her alone". Covering her face with her hands, huge crocodile tears flowing down her checks, until her face was bright pink and stained.
Bella kept staring at the nurse with almost a fear in her eyes that we couldn't figure out, then the other nurse noticed that the nurse giving the medicine had on a mask over her face and she promptly removed it once noted, suddenly Bella calmed down to a point where we were able to control the situation a little better and ease her worry.
A mask? That's all it was. A mask sent her to a point that was concerning to all involved. And why wasn't she able to voice that?
This time was a mask. Last time was holding her down. The time before that was because she was tired. The list goes on, my point is that she acts in ways that are socially unacceptable to an almost six year old.

Where does this leave her in society? Each year that she grows and changes it continues to bring about great things and progress, but we also see gaps. Gaps that also seem to grow and cause alarm.

How as a Mother, the person closest to her and most responsible for her outcome, help her??? Will my dear, sweet,loving, social butterfly be stuck in her cocoon because she herself doesn't even understand how to help herself?

Yes, I worry. I worry constantly. At this point, I feel my worries are justified and hard to face.

Sunday, July 10, 2011

No suitcases being packed today...

Really missing the buoyancy of swimming, along with the amazing ability to make me feel skinny or at least not swollen...
This is day 8 that Bella is still angry at Grandma Dee. When we ask her if she'd like to go swimming, she quickly replies "no Dee is mean!"

My Mother is over the top with rude comments, snippy remarks and constant yelling at the kids. Joe and I figured they loved her enough to ignore most of these pesky traits, but I guess Bella has reached her max and Remi is even siding with her. Which is amazing considering she keeps my nephew most weekdays and Remi emulates him down to a scary T.

So, this leaves me wondering what I should do over the failed relationship. I wish it was easy enough to just talk it over with my Mother, but that is not the case with a giant exclamation mark.

Is it my job as a Mother to keep my daughters bond with her grandparents strong? Or, is it as simple as, she doesn't enjoy being around her, end of story?

Guess, I'll wait it out a while longer and in the meantime, I will be filling up our kiddie pool out back and awkwardly sitting my giant butt in it while the kids splash around me.

Friday, July 8, 2011

Still on the yellow kick

Two blogs - one day- how 'bout them apples...

I just had to share one more story,

As I've talked about before, Remi loves all things yellow, including yellow dogs. Yesterday as I was flipping over emails, Remi was peeking over my shoulder watching everything. So we watched a few videos.
One about an alligator and her babies, another about a 350 lb black bear in Virginia and a dancing hippo. Then Remi asked to see dogs. just happens to be saved in our bookmarks...Not yours?

Gladstone Animal Shelter is the first one to always pull for us, since we are so close and you would never believe me when I tell you this, but the first dog to show was a one yr old yellow lab, named Yellow. Unbelievable really. Remi was immediately in love! This was his picture

So, this morning after going to the park, we drove over to the animal shelter in hopes of 'only' meeting Yellow. Thankfully, the dog had been reunited with his family and was no longer available.

When I tucked the two kids in bed tonight and asked them what their favorite part of the day was, Remi said the animal shelter, looking at the dogs that wanted to come home and Bella said looking for Yellow.

Remi started to look really sad again over the mention of Yellow, until something sparked and he said,

"I'm going to ask Santa for a yellow puppy for Christmas. Not you Mom, cause Santa only answers kids and if you ask, he'll say no, but if I ask, he'll say yes."

Oh, my goodness!

Just like the Berenstain Bears

Remi and Bella have both decided they want bunk beds, just like the Berenstain Bears. Remi has even decided that Bella should have the top (we will just ignore the fact she has a bleeding disorder & CP) and he should have the bottom, the same as Brother and Sister bear. We read these books pretty often and the kids think of themselves as each bear. Many times while I'm reading, I'll even change their names to Remi and Bella's. After doing a quick search on prices, we were a little leery to jump out and buy some without a little further testing.
The kids are both such different sleepers. Bella wakes up early, Remi loves to sleep in. Bella never moves at night, Remi looks like a tornado visits him nightly.

So, to test the wishes of both kids we have moved Bella's twin bed into Remi's room and placed them side by side.

Last night was the first night of our experiment and it actually went fairly well. There was a lot of giggling and initial getting up, but eventually both went to sleep and slept all night.
It was endearing to see the two of them together, bonding over babies (stuffed animals), whispers of monsters and ghosts, and helping each other calm down to fall asleep.

Tonight, I wasn't sure what to expect since Dad was working and we had a huge day of activities.
I tucked them both into bed with promises not to get up, then closed the door, but right before the door closed, Remi asked if it was okay if they talked for a little while. I said yes, but only whispers and not for very long. They both said okay and so far, so good.

I haven't heard a peep from either one (finding wood to knock on).

Not only is this adorable that they want to sleep together, but it also answers our question of where we were going to put the new baby when she came.

With both kids, it was a pretty strict rule, that Mom & Dad's room, was just that. Only on rare occasions (like maybe 3 times) have one or the other slept with us and it's usually only when puking is involved.
So, needless to say, I have been stressed over how we were going to manage having a baby sleep in our room and for how long.
The other good news, is that this idea of the two kids sharing a room is completely their ideas and has happened with still a few good months to work out any kinks, so hopefully by this fall, it will be no biggie to move a baby bed into Bella's old room.