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 response...like sound sleep. More to come, exhausted tonight, need to veg and not think!

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!"

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?

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.

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.

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.
Petfinder.com 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.

Okay Mom, you can cry now

What a terrible, crappy day.
I am still super sick (and can't take a dang thing except Tylenol-um, not cutting it).
Took an hour to get to school this morning due to traffic.
Dropped kids off, picked Remi up, drove back home ate lunch, picked Bella up, then time for hospital visit.
3hrs later.
Stopped at McDonald's for dinner, stuck in traffic again, Bella is yelling in the backseat "I have to pee." "I have to pee really bad."
Pulled into driveway only to find Bella and car seat soaked from pee. FREAKING lovely.
My head is splitting open.
Bella is now crying that she misses her Daddy, while Remi is telling her that Daddy is never home. Which causes even more crying.

As I'm cleaning the car out, Remi asks what is the matter with me.
And I just ask him if I can cry yet?
He tells me not now, later.
Okay, I laugh.

Inside, I tell Bella no TV. We need to eat our now cold, super nutritious dinner. She screams and cries through the whole thing, snot flying everywhere. The dogs are barking at the cats out the door, Remi is now crying because he is so tired.
My head is beyond splitting open!

Then Remi looks over at me and says. "Okay Mom, you can cry now."

Which of course starts out as a laugh, cough, snot, then turns into a cry, but my head is killing me so bad, that even crying hurts.

Yelloooww Dog

Remington's on his yellow dog kick again. This first started around Christmas time with him begging for a new dog, a yellow dog. I would gently brush it off and he seemed to forget it pretty easily.
The last couple of days it's started again. Tonight after bath he is reading a book about dogs and there was a yellow lab pictured and he mentioned again how much he really wants a yellow dog.

Thinking that down the road a trip to the pound would work for all. I told him that yes he may have a yellow dog when our three dogs are gone.
He got so excited, jumping around and hollering at Sis that they were getting a yellow dog. I let this go on for a few minutes, then reminded him that I did say AFTER the other dogs were gone, so that meant "his dog, Diablo" wouldn't be around anymore.

Without skipping a beat, he said fine. When Missy and Minnie are gone, Diablo and I will go to the pound and look for our next yellow dog.

Diablo is ten and has been the worst, most beloved dog in the world. I was just teary eyed this morning thinking about what I'd ever do without my big D.
I forget how attached the whole family is to that dog, especially Remington.

I love that my Daughter can talk now

Two stories that I just have to share today

*Eating dinner tonight with the kids, I was asking them what they did at school today and they both were spouting off things and I was trying to keep the conversation going.
So, Bella tells me she played outside for one thing and I asked her if she got to swing.
She said. "Yes, with Lucy." Which is one of her sighted peer classmates.
I asked her if Lucy was her friend and she said.
"No Mom, Lucy is my BEST friend."

Awe, how sweet. I didn't even know she knew the word Best Friend or the meaning.


So after dinner we rush around because tonight is soccer night for Bella. She is participating in the Challenger program that the YMCA offers.

*Tonight was the kids' first game against a different group of Challengers, The Green Shirt's, as I called them.
Bella was actually pumped for the game and seemed to get the idea of it. The ball was passed or came into her hands (err,feet) several times over the course of the game and she would run it with the best of them. It was awesome, furthermore, she seemed to really enjoy herself. That is, until the Green Shirts would steal the ball back. Which they did often!

"Go away Green Shirts" or "Green Shirts are MEAN!" or "Stop Green Mean Shirts!" were three sayings that Bella would say over and over again.

I kept chuckling to myself and telling her that they weren't mean, just really good. At least, one little green shirt guy was really good and this evil Mommy about tripped him to see if we could bench him.
I know, terrible, but he was upsetting my baby. Would I win back any points if I told you he pushed her too. See, what a bully! Take him out. haha

Awesome Day Bells ~ Way to Go Babes

Catching on

The day was packed full and my body is telling me so now.
Dropped Bella off at school then Remi and I spent the morning smelling flowers then headed to the park.
We played for several hours, until suddenly, he informed me that he was ready to go.
It was past lunch hour at this point, and boy did he let me know. Remi requested McDonalds for chicken nuggets, fries and chocolate milk, then playing.
I'm down with it.

After lunch, he said. "Where do you wanna go Mom, anywhere but home?" I drove around with less than an hour before needing to pick up Bells and decided I hadn't been to K Mart forever.
We meandered through the entire store and managed not to buy anything!

Picked up Sis, dinner, playing, TV, skipped bath (let those park germs really soak in overnight), books, and still got the kids both to bed at 7:45pm Whoohoo Mom.

Except, Remi looked out his window and had this terrible face. When I asked him what was wrong, he said.
"It's not nighttime yet, it's not even dark yet."

Um, well this Mom says it is, so sleep tight little one.

Nothing much

This morning as I was hugging Bella goodbye for school, she tells me, "Have a fun day Mom." How cute is that??!!
We have been clicking lately and it's been so nice, almost easy. Now, to just help everything else in her world click more easily and we'll be doing super.

Remi is spending his third night in his new big boy bed. He is still a little frightened, but nothing like before. And when asked why he is scared, he tells me that he worries 'they will come back'. I of course, promise things I probably shouldn't promise. Like there is no such things as ghosts, but what am I to do?

My tank is on E

I am so exhausted this week with the four Doctor appointments for Bella and one for me, not to mention the ER visit last Saturday that got thrown in for fun. Oh and don't forget to put a nice big cold for me that was most likely caught from the ER on top and I'm dragging. Thankfully, the soccer was canceled Tuesday night. I know, second week and I'm already glad it's canceled.

Joe and I spent our kid free Wednesday morning at the Social Security office. We received great news that after review of our accounts, we now owe them $5K+ and Bella is no longer qualified for SSI. Really?!? One working spouse for a family of four with a disabled daughter who incurs endless amounts of bills and copays, but we make to much? Don't forget the house payment, car payment, insurance, school tuition, groceries, gas, etc. Give me a effing break people!!
Here's the deal, I applied for the second time June '09. We received our first check from them Nov.'09, but I guess, one month later we no longer qualified....They just decided after 15 months to notify us. So now, monthly payments have been set-up, nothing like owing the Gov't to make your day look sunny.

I am terribly bitchy lately and need a vacation. I'd even settle for a staycation, like say at my Mother's house...okay, maybe not there, but somewhere equally close and cheap...I really doubt this is going to happen anyway, so maybe I should dream bigger. Mexico, Bahama's, Spain?

Just a Sunday

This is the most glorious day weather wise!!! I halted my never ending cleaning projects and laundry piles in exchange for pushing a swing, dinosaur hunting and soaking up the sunshine.

Remi is currently playing right outside the door with his dinosaurs on the deck. He has the best commentary, very creative and exciting. I think I could listen to him playing for hours. The dinosaurs are playing hide and seek with each other. Remi counts to eleven (that's amazing in itself) before he pretends to find each one.

Bella is "reading" a book all by herself. It's a Backyardigan book that I have read a million times to them and she, sort of, remembers the words, at least several thrown in here and there. This only makes it even more fun to listen to her talk. Six months ago, nothing. Now we can't get her to be quiet.



Vitamin D is good for the soul~I feel so at peace (and a little sleepy)

Birthday Wish

Remington and I went to shop for Miss. Kitty's (Bella's teacher & our friend) birthday present today and along the way Remi was spouting out ideas of what she might like...or more like, what he might like...until he said,
"I think Kitty wants mice."
Why buddy?
"Because kitties like mice."
True, very true, but I doubt this Kitty would like mice very well.

Smarty pants~Gotta love 'em

The IncrediBella’s 2nd letter

When You Give Help You Give Hope.

April 17^th, 2011. Put that date in your calendar for that is the day of the annual Trolley Run, a four mile race that benefits The Children’s Center for the Visually Impaired. Last year, racers big, small, fast, and slow alike lined up to support CCVI and raised over half a million dollars. This is where I ask you, my friends and family to help me in reaching my goal this year.

My name is Isabella Riddell, and I am five years old. I have curly blond hair that bounces when I run and bright blue eyes that sparkle when I smile. Mommy says I could be a model because I am so beautiful. I go to CCVI four days a week and my classroom teacher, Ms Kitty and her assistants Ms Eliza and Ms Andrea help me do things that I was never sure I could do. You see, CCVI has provided support and assistance for children like me and their Mommy’s and Daddy’s for close to sixty years. I have a condition called Cortical Visual Impairment. My brain doesn’t let me see very well. I also have epilepsy, cerebral palsy, and afibrinog-something or another. At CCVI, I receive not only therapy for my vision, but physical therapy, orientation and mobility therapy, assistive technology, occupational therapy, and speech therapy. I even get to swim once a week in the pool for aqua-therapy. Mommy and Daddy tell me that I have continued to amaze them, my teachers, and my therapists by what I have been able to accomplish. Just this year alone my speech has increased literally tenfold.

The expert therapies and classroom education I receive are not cheap, as each child costs approximately $30,000 per year. This is funded primarily through generous private donation and charity fundraisers such as the Trolley Run. This is where I ask you, my friends, my family, my neighbors, and my community, to help and support a cause that is near and dear to my heart.

CCVI is an amazing organization and enough great things cannot be said about it. CCVI has been the greatest influence in my young life. I have been able to overcome adversity and conquer obstacles that most none of you could even dream of. I have been able to do this because of CCVI’s tireless dedication and efforts.

Any amount of monetary donation is greatly appreciated as CCVI will continue to play a role in my life for several years to come. You can mail your donation in check form, made payable to CCVI to:

Isabella Riddell

1702 NW 63^rd Terrace

Kansas City, MO 64118

You can also visit my web page and donate electronically at http://tinyurl.com/37pboyz

Our goal this year is to raise over $2000! Please help us meet our goal and I’ll buy you dinner, okay probably not but I will give you a hug and a sloppy kiss.

Love,

The IncrediBella, aka Isabella

& Family

The IncrediBella’s

2010


When you give help, you give hope!

Dear Family and Friends,

Many of you know our Daughter, Isabella’s, story or most parts of it and are usually astounded by the progress that she has made. Most the time I enjoy taking full credit for her gains, but this would have me leaving out a very important part of our story.
Isabella’s story began on December 4, 2005, when the cruel reality that everyone is not given a perfect bundle of joy, became our reality.
Isabella was born with so many complications that after eight weeks in the NICU, Joe and I were patted on our backs and sent home with well wishes from Nurses and Doctors alike. The Doctors never did quite have a handle on what exactly Isabella’s issues were, but they were certain that she would never crawl, talk, see, walk or most likely even live to her first birthday.
I spent the next couple of weeks in a quiet existence, just rocking my little girl, singing and promising things, that I myself did not know if I could even grant.
Then at 3 months of age, two beautiful women from the Children’s Center for the Visually Impaired (CCVI) campus came into our home to perform a visual evaluation on Isabella and our lives changed almost instantly. They assured me after the evaluation that Isabella, could in fact see and that she was not completely blind. They went on to explain that we would take the vision that she did have and would improve upon it. We were set up with therapists with visual impairment backgrounds, that would come into our home on a weekly basis, to not only work with Isabella but to teach and instill confidence into a very lost Mother.
At two years of age, Isabella started two mornings a week in CCVI’s preschool program and from there her truest potential was only highlighted.
Isabella continues receiving early education with CCVI in the preschool 4 class, four full days a week. In these four days of school Isabella receives occupational, physical, orientation and mobility, assistive technology, speech, vision and aqua therapies.
For 58 years CCVI has had the mission statement to prepare children with visual impairment, including those with multiple disabilities, to function at their highest potential in the sighted world.
That is why our family, along with 400 other families, trusts CCVI to play such a significant role in our Daughters life.
Each April, we are allowed the chance to give back just a small dose of our gratification to CCVI through the Trolley Run. With this fundraiser we have fun setting goals and creating family team names. Our goal this year for The IncrediBella’s is $2,000!!!
We ask you, our family and friends, to contribute to the 23rd annual Trolley Run on April 17, 2011, by participating in the 4 mile walk/run, sponsoring our family team, The IncrediBella’s, or both.
You can donate directly through our personal website, listed at the bottom of this letter, or make a check out to CCVI and mail it to our home address at 1702 NW 63rd Ter in Kansas City MO 64118. CCVI is a 501 (c)(3) so you can write off your donation.
Thank you in advance for your continued support.
Love,
Joe, Rachel, Isabella and Remington Riddell

Trolley Team 2009

Trolley Run Website ~ http://tinyurl.com/37pboyz

Had to share

I was driving around the city today, like always, we make it a practice for the kids to watch the lights and tell me their colors. I have two very good back seat drivers!

Remi tells me green is for GO ~ yes that's right
Then I ask what means STOP ~ they both yell red
Then I ask what the yellow means...silence...
Remi pops up and say's, "Orange means go faster!" ~ good I say, really it's called yellow, but looks a lot like orange and it's meaning is to USE CAUTION. Mom just likes to say it means go faster.

Remi once again, pipes up and says, "Careful Mom, don't get a ticket!"

Oh, you little turd :D

Just one of those days.

Remember that song by Monica titled Just One Of Those Days? (and I probably just dated myself)
This way my day from the get-go.
We had made a 9:30 appointment for Bella's five year/Trolley Run picture. Which means rush, rush, rush, wait, wait. Somehow being the second appointment, they were already running behind, not good when you are waiting with Bells.
Our turn pops up and disaster hits. Bella kicks, screams, hides in a corner, licks the backdrop,etc. You name it, she did it...that would be all but smiling...
Thirty minutes later and threats of no T.V. for the rest of the day, I threw in the towel.

The photographer was aghast and really I'm not sure if it was directed towards me or my five year old that was acting like a child who had severe autism (which she does not).
I would love to say that I frankly didn't care what the photographer thought, but I did. I wondered what she was whispering to her follow co-workers. I tried to think that she was commending me for not breaking down and keeping my cool while I calmly collected my heaping, mess of a screaming child off the floor and told her we were done for the day. When really she probably thought I was a push-over with a super spoiled child on my hands.
Or maybe that's what I wonder. How much of this episode was caused from her C.P., S.I.D, C.V.I., etc, etc. and how much of it is that she is an out of control, spoiled child?

I have tried very hard to never coddle Bella or make excuses for her, but I do feel that if Remington had pulled this stunt today, I might have acted differently.

I made Joe stop at Starbucks so I could douse my anger/disappointment into a cup of steaming mocha. Then I proceeded to run off to my happy place for an hour.
Otherwise, known as TARGET.

Do you know that Bella never asked for T.V. once today? That freaking blows me away. That also means she get's it and maybe it's time to take off the kiddie gloves.