Tuesday, March 31, 2009
Can you believe we're already in the fourth month of 2009??
Holy cow! I know we've spent the last month of it sick and out of school!! I am hoping April will go better for Daniel.
Here is an update since its been a little while since I've posted.
Chase Daniel is at home with his mommy and big brother Zachary (who just adores him)
Chase wasn't suppose to be here yet but that's OK...he just didn't want to share all the birthday's that come in April!! Below is the picture of Daniel when I am holding his baby nephew...he's not taking to Chase very well. Thank goodness Daniel is the youngest of my children...I think he'd have problems with a baby around. What do you think? This is the first stage of his boo-boo lip.
My sister Aimee (next one older than me) has moved to Texas. Boo hoo hoo. So if any of you are from Texas and you see the new girl who lives in Denton....that's my sister so be nice!!
Our caterpillars are now in their cocoons or whatever they are called. Can't contain my excitement!
Daniel rocked therapy today. We are getting him back into the groove of things very slowly. He has been so sick and his body stressed since January but especially this past month. With being so sick and missing school and therapy he has definitely lost some strength and endurance. But I am proud to say that he is consistently going potty on the potty!!!
Friday, March 27, 2009
And to my surprise she said yes, have at it.
So...today in class I received a lovely e-mail from my mother about the new issue that President Obama has dug himself into, the issue being his comment that he made on the Jay Leno show about the Special Olympics.
Obviously reading this online it lead me to a site www.r-word.org.
Spread the word to end the word…
At this site I was able to make a pledge and this is exactly what I did.
I Brittany Marie, pledge to not use the r-word and work on eliminating this rude and degrading word from everyone’s vocabulary. Because someone without a disability wouldn’t last a day in the shoes of someone with a disability.
I pledge because I am not weak, I am stronger than the person who has the small vocabulary and is ignorant, who can only think of the r-word to describe something else, I am smarter than that. I pledge because I see my brother and his struggles, I pledge for Daniel John-Maxwell because it is offensive to me.
I have corrected people when I hear them saying the r-word because I am not scared of what someone would say to me. Because I am not in the wrong, You my friend, are the wrong one for the use of the word. Do not use that word to describe something or call someone that name.
It is just as bad as other terms that people dare not to use (Yes, You all know what words I am talking about) so why is that word okay?
I have seen every step, stride, and struggle that my brother has made and it makes me sick to think that people could stereo-type him and every other child into such a derogatory category. As a college student I have heard this word used so frequently, it make me sick.
In fact, I think that every person that I know who uses the r-word would have given it up a long time ago, and would think twice if they had ever actually took the time to know someone with a disability, instead of just judging them instantly. With what my brother does on a daily basis, he by far outshines your "typical" person.
My dear brother Daniel has changed my life, cheesy, I know but it is the truth. My brother has made me a stronger person, he has made me realize that life isn’t so bad, he has made me appreciate everything and every ability that I have. I walk because I have the ability to, I talk and will be more than happy to talk for Daniel and say what I think to the people who stare. I would give everything I have, even my ability to talk for the rest of my life just to hear the words that Daniel would say.
I feel that no matter what I say I would never be able to actually get out how much he means to me, how much my family means and how I have seen him change my entire family.
I share his story with people because maybe, just maybe someone else’s life could be changed just like mine was three years ago.
I pledged for my brother because he is better that that, better and smarter than the people who can’t think of a different word that ACTUALLY makes sense to describe what they are saying…
Now let me ask you a question… Would you like someone to call you a derogatory name? Is it retarded or is it ridiculous??
To pledge click the link, its easy. Share the word to end the word. www.r-word.org
Thursday, March 26, 2009
Go change your clothes right now.
Go on .......
I'll wait ...........
Your at work?
Can't change your clothes?
See that purple highlighter/marker?
Grab it and draw a purple ribbon on your cheek......go on, no worries....
or go find a piece of purple paper and cut out a ribbon.
Thank You, you look much better in purple!!
Doesn't that feel better?
You look marvelous!!
Today you shall walk proudly my friend, wearing purple of some sort. Purple Day.....Epilepsy Awareness.....its a good thing
Job well Done!
Here is Brittany & Daniel. He's trying to smile, but still manages to sport his purple even laying in his bed sick!
And here is a text message/photo of his therapists today, wearing their purple shirts to support!! Ms. Linda & Ms. Carol
Here are some different families across the states that are sportin' the purple proudly!
These guys (from New York) can be seen over here too!!
And from Illinois---
Wednesday, March 25, 2009
Tuesday, March 24, 2009
Monday, March 23, 2009
This isn't an easy feat!!
I'll say if there is a hidden camera somewhere in my house or if someone were to walk by and see in the house, they would think I was nuts.
There is a bunch of singing and dancing (done by me)
flash cards, sorting, computer (Daniel's favorite things to do)
many trips to the potty (I figure we're home we might as well utilize the time with potty training)
Watching "Signing Time" videos (Daniel)
programming the Eco14 (more on this later!)
Oh yeah and for our science part of the curriculum, we have our caterpillars (2) that we are watching grow.
Hopefully to become butterflies. Daniel (& daddy) seemed to enjoy it last year, so we figured we'd try it again. Beaumont (therapy) has a butterfly house every year at the mall.
A few of the kids are invited the day before it actually opens and they get to adopt a butterfly kit. Along with that they get to release over 3000 butterflies into the house. Now while I think this is a really cool thing. I will NOT go into the butterfly house. Totally freaks me out.
Victoria, Melanie & Daniel
Victoria also refused to go in the butterfly house because the guy working said they would probably go and land on her head because of the blue hair!
I am proud to say that I think this year I will handle things a little bit better than last! I THINK!!
Sunday, March 22, 2009
Are you here because you thought you'd find something about college basketball?
Looking for updates for your brackets? Or did you come here because you heard me scream in frustration?
If you're here about basketball, I know nothing. (And Lonnie was so excited to see the title of this post...he is so disappointed right now!)
But, I am here to please. So, if your DID come here for basketball, Lonnie made the image above link to the NCAA bracket update page. Enjoy!
If you're here checking in to see how we're doing in the month of March? Well, I'll tell you its complete madness. Up until lately I would tell you that I followed these instruction to clearing out Daniel's nose. But right now.....I'm doing whatever works. Battery Operated Nasal Aspirator. Fingernail. Wadded up Tissues. Funnel. WHATEVER to help him breathe.
March 10-16 Daniel still out of school & return part time to therapies
March 17-19 Daniel back to school and therapy full time.
March 20-22 Daniel sicker than a dog yet again.
Its like I get him healthy, and then send him back to his normal schedule and within days we're sick again. I wonder if they sell giant plastic bubbles at Target??
Friday, March 20, 2009
Today is Cerebral Palsy Awareness Day!!
WEAR GREEN to show your support!
There is also a sweepstakes going on over at "Life of Logan"
Check it out, follow the rules and enter to win!!
Keri - Logan's mom is a super person and so full of love for her child,
help spread the world about cerebral palsy!
This is cute little Logan
- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.
- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?
Thursday, March 19, 2009
I am also looking for alternative ways to use the toys. It needs to be fun, educational and therapeutic all at once. This is not an easy job, actually it can be stressful. I refuse to be one of those moms that puts their child in front of the TV. Don't get me wrong, some TV is good. I just want him to be stimulated by more than "the one eyed baby-sitter". so I search for hours to find good toys. Imagine how excited when I was lead to this site called ebeanstalk. Well upon looking more at the site, I was very excited to see that they have specialist, experts and therapists that review each toy. These experts only pick the best toys for learning and development. Those are my kind of toys!! This little tid-bit I grabbed off their site: “Developmentally Delayed” is a broad term applied when specific milestones such as crawling, grasping, walking, speaking, etc., are not being achieved within a timely manner. This can occur for any number of reasons and can be as simple enough reason as low muscle tone, oral motor weakness or maybe just because a child is taking his own time. Our experts have selected baby toys and toddler toys in each age category, for each discipline, which they believe most effectively help children to meet these milestones. As with all of our toys, each one is shipped with an instruction card with suggestions on how to use play to build a strong foundation on which to grow."
I thought it especially cool that they have a section for development delays/special needs kids. Yes I saved that as a favorite link too!
Anyhow, I was excited to find some place that is reasonably prices (not hiked up prices because they are classified as "special needs toys") and a site that was user friendly. I don't know the last time I found a site that had this level of pre-screening of the toys prior to making them available to the general public.
When you check it out and you buy something, use this code when you check out.
The code is TGS345 to be entered at the shopping cart and you can save 15% off your order (if used before June 30,2009).
Now I just have to figure out how I'm going to explain the sudden increase of toys to my husband. I could always say that they just appeared on the doorstep. Do you think he'd believe me?? These will be the first to arrive :)
Little does he know, I still have a whole list of things I want to get!! The wish list for Daniel is one that I will have to take in steps (to avoid an argument), I have to sneak them in slowly!!
Thursday, March 12, 2009
So, please find it in yourself to check out these links.
- 32 high-efficiency washers and dryers stationed on the truck
- Can do 300 wash and dry cycles a day -equal to one year's worth of laundry for a single family
- Will wash about 9,000 loads of laundry over a four-week period
- Leveraged during massive disasters where electricity is unavailable in the region
- In partnership with a local laundromat, the Tide Loads of Hope vans provide free laundry service at the same load rate as the trucks
- Leveraged during disasters where neighboring communities still have a source of electricity
March of Dimes - March for Babies For those who have heard of March of Dimes, but never knew what it was about. Just visit the link and read below, and support. Laura's walk is April 26, and that is only 46 Days left!!
I've joined March for Babies because my sons were born at 25 weeks the impact doesn't just affect the babies it effects the whole family and the March of Dimes help the needs of moms and babies in our community and across the nation. The money we raise for March for Babies will help:- support all-important research offering preventions and solutions for babies born too soon or with birth defects
- educate women on things they can do to increase their chances of having a healthy baby
- provide comfort and information to families with a newborn in intensive care
- push for newborn screening and health insurance for all pregnant women and children
My son has epilepsy, and I will tell you it is very scary. Not something that many people are aware of, and that is why this little girl, and her goal, is so cool. Check out Cassidy Megan, the little girl who started Purple Day.
"Hi, my name is Cassidy Megan. I’m nine years old and I have epilepsy. I started Purple Day because I wanted to tell everyone about epilepsy, especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else. I also wanted kids with epilepsy to know that they are not alone."
Show your support, wear your support, wear purple. We have made up some t-shirts to show our support. Each of my daughters, along with Daniel and my daughters friends and co-workers will all be wearing our purple shirts on the 26th of March. If you're interested in purchasing a shirt, send me an email (firstname.lastname@example.org) and we'll get you hooked up!
Wednesday, March 11, 2009
Daniel no longer is shooting boogers across the room. We have no more watery, boogery eyeballs. We have a happy camper, who is ready to go back to school and hopefully stay healthy and not get re-infected with any germs!!Photos from:
Client Scholastic Press
Art Director Joan Michaels
Illustrator Bill Mayer
Illustration © bill Mayer 2007
Monday, March 9, 2009
I'm on my fifth child (some are even having their own!) and I've never heard of this contraption!
Jamie over at I Heart Milo, told me about it on my post about Snots, Boogers and Green Monsters. What the heck?? I am always in the baby section of the stores scoping things out and I've NEVER seen this.
This should automatically be given out when you're in the hospital with your baby!
For those of you young moms who are fighting with that bulb syringe ...THROW IT OUT! Stop getting frustrated by those big boogers that just won't come out. Or if you're one of the many moms who uses their fingernail (YES I HAVE TOO!), STOP. Or the moms that use a Q-Tip, or other instrument to grab hold of those slimey cling-ons...STOP
Get this! Do a couple squirts of saline solution and turn this on.
We picked one up for $20.00 at Walmart, they are also available at Toys R' Us and Target. You can order it online.
BUT, your child will breathe much, much better!! I can't imagine not having one of these ever again!! If I get invited to any baby showers, you better bet mom-to-be is getting this bad boy!!
And if you don't believe just me, ask Erin over at Smallest Smykay or check out her comment on the Boogers post!! She thinks it rocks too!
Sunday, March 8, 2009
"Muscle tissue gets stronger after being broken down.
I believe the same is true for our souls.
Feeling broken from a crisis opens our hearts
and help us appreciate things we previously took for granted."
- Niles Goldstein, Real Simple Magazine
He was saying that about a totally different topic than dealing with special needs, but no matter what the crisis is, it stands true. I do not take for granted the little things that we have. I appreciate every little bit of time I get with my children.
Saturday, March 7, 2009
Tell me, how to teach my child how to blow his nose?
He's little nose is so stuffed with boogers. I am constantly wiping his nose, spraying nasal solution up there to try to get the hard crusties out of there.
Its weird because we have a weird mix going on.
Sometimes they are rock hard boulders up there that require intervention and need to be extracted with a boogerectomy.
Sometimes they just run out like a faucet turned on full blast.
Sometimes they are those ones that you grab hold of and they are attached all the way down to his toes and the more you pull they keep coming, and you think you're actually hooked onto an organ of some sort. He generally giggles so it must tickle.
Those ones that are sticky, and you think you got it all off his face and an hour later you realize that it just slithered over and is now dried up in his hair.
It's always fun to be driving in the car and he sneezes. I turn my head for that quick glance and there is a booger all the way down to his chin. No Kleenex in the car.....uuum Victoria's work shirt will do!! shhhhh she'll never know.
OR better yet, I'm driving, he sneezes and I do the head turn to check and nope, there is no booger! Yeah. Couple miles later I stop at a light and turn to talk to Daniel. He's got his pointer finger smearing the booger I didn't see that he launched on his window. Nice artwork. I'll leave that for Daddy, he'll be so proud. I am so tired of him being sick this year.
I have used the ball thing to suck out the boogers, and most of the time we can't get it to do a good enough job. He still breathes like Dart Vader. I just want him to BLOW his nose.
I put the little Kleenex up to his nose and say "Come on Daniel, blow blow blow", and he just looks at me like I'm nuts. We've done demos to show him how to do it, and that just gets more giggles.
I am so sick of snot and I am snot kidding!
How did YOU teach your kid to blow his nose?
Life would be so much better for him if he'd just blow!
Thursday, March 5, 2009
Its been a busy week here. Poor little Daniel is a germ magnet and is catching everything possible. Not sure what it is, maybe we're making up for 2 1/2 years of never being sick! He has been sick more these past few months than I can remember any of my other kids being sick!
I can't remember when the last time was that we made it to school for a whole week, or all of his therapy sessions. I so badly want to get back on track again.
For some good news - Daniel got approval for his potty chair, so we should be getting that in a couple weeks.
We are still seizure free - I think. At least I'm not seeing anything.
We are still in the process of programming Daniel's Eco-14 to work the way we want for him and selecting a voice that will be for Daniel. I am very geeked to get it done so he can start using it daily. We practice on a few screens that we have set up and he thinks its a riot. He tells me to make his train go, to push it faster and then giggles. Then we start it all over again with him pushing the train button. I act all exasperated and say "OH MY the train AGAIN??" and he just giggles and giggles and scrunches up his little nose.
Now to address the post from the other day about "Guilt".
I don't want people to think I am embarrassed or ashamed of Daniel. That is the farthest from the truth. I could not be prouder of him. It does not bother me that I have a child that is different. DO NOT think for one minute I would give Daniel up or who he is, I just get sad because I hate to see my child struggle. I don't think he is suffering, he isn't in pain...but he does struggle, and he gets frustrated. I feel sorry because I see what a wonderful person is, and not because he is my son, but because I see past the disability. I see Daniel for Daniel. When I look at him I don't see the little boy with cerebral palsy, or epilepsy. I see a beautiful little boy full of life, just wanting to be happy.
Katy (Bird On the Street) says it in her post tonight;
"These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know."
Again, please don't take my posts wrong. The amount of love I feel for Daniel is awesome. When I get down its because I get sad/hurt because I can't help but think how unfair it is that he has to go through all of this. I hate that people won't see him for who he is, and they will judge him because he can't walk or speak. They are judging the book by the cover not the content, and that saddens me. They read a file and they come to an assumption of what he is, but they don't see WHO he is.
I just wish I could tell everyone that means Daniel and make them understand -
"You may not hear my words, but just look at my eyes and listen with your heart"
If you do one thing in your days to come, don't judge someone just because they are different - they didn't ask for it - inside, they are just like you and me - they just want to be accepted and heard.
Wednesday, March 4, 2009
On March 26th, people all around the world are encouraged to wear purple in support of Epilepsy Awareness Day. Get involved and show your support!!
Here are a few important facts about Epilepsy:
- Approximately one in ten people will experience at least one seizure during a lifetime. A single seizure, however, is not epilepsy. Epilepsy is a condition that is defined by multiple seizures.
- Seizures cause a change in function or behavior. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or a convulsion.
- An estimated 50 million people worldwide have epilepsy. That means approximately one percent of the general population has epilepsy.
First Aid for Seizures
Generalized Tonic Clonic Seizure
In convulsive (tonic-clonic or grand mal) seizures, the individual loses consciousness and falls. The body is initially rigid (tonic phase). In the clonic phase, the arms and legs jerk or twitch rhythmically. Consciousness is regained slowly.
- Stay calm.
- Time the seizure – Usually there is no need for a trip to the hospital, unless the seizure lasts longer than five minutes (not including the postictal phase), the person has more than one seizure in a row, or if a person is injured, pregnant, or has diabetes.
- Remove objects that may cause harm - clear the area of sharp or dangerous objects.
- Do not hold the person down or restrain their movement.
- Do not put anything in the person’s mouth: it is not possible for someone to swallow their tongue.
- Turn the person on his or her side as the seizure ends to allow saliva or other fluids to drain away and keep airway clear.
- Do not offer food or drink until the person is fully alert.
- Stay with the person until they are fully alert and thinking clearly. Reassure the person when consciousness returns.
Complex Partial Seizure
For someone with disturbance of consciousness and undirected behavior, such as mumbling or random movements including head turning or pulling at clothes:
- Speak calmly.
- Do not restrain, but gently guide the person away from danger.
- Stay with the person until he or she is fully alert.
Please note, the seizure and post seizure confusion may last as long as 20 minutes.
Absence Seizure (Petit Mal)
There are many types of seizures from the ones listed above to absent seizures, tiny twitches to infantile spasms (this is what Daniel suffers from currently). Regardless of the name of the seizure, they are all scary to see and even more so to experience.
To find out more about Purple Day and what it means, visit the site by clicking the link. Here is another cool kid, Cassidy Megan who is making a difference in this world.
Tuesday, March 3, 2009
When does the feeling of helplessness lessen?
When does the "what if's" go away?
When does the questioning yourself of "why this is happening to us? we're not bad people.."
Today I dropped Daniel off for school. In one part of my head I know he enjoys school, his teacher, and learning. He thrives on learning, show his a flashcard, ask him where colors are, spell something to him and he is hooked on you and does not want to stop.
In the other part of my head I wonder if he is thinking, "Why is she leaving me? Doesn't she want to be with me?". And I feel like I am abandoning him. I say bye bye to him and I'll see you in a while and he just looks at me with those big brown eyes. I am assuming he is ok with all of it.
But maybe he's not, he can't voice his opinion. Some people say if he wasn't happy he'd cry. Maybe he knows that his cries don't do any good and I won't understand him. Maybe he just sits in his wheelchair and thinks.."I can't say anything she doesn't understand that I don't want her to leave."
I don't know why today it hit me hard. Today was no different that any other day except that I cried all the way home. Just have this knot in my stomach, of this big ball of guilt. Guilt for not protecting him from all that is harmful, from not keeping the monsters away, for not keeping him healthy, for not doing everything humanly possible. Guilt for making him suffer with this brain malformation. Maybe if I had done something different when I was pregnant. Ate better, took better care of myself, if he felt loved enough, if I did something and this is suppose to be a punishment for me but God is making my child suffer instead. I know in my head that there was probably nothing I did wrong, that it was just a fluke. But there is always that little part of my brain that is so strong and it over rides all the other areas and says I am to blame. That I did something to hurt him, and now he must suffer his whole life.
There is the guilt that I don't do enough for him in the day. But I am torn between getting him all the therapies possible each day and just letting him be a little boy. If I let him be a little boy and watch tv or play with him, I feel like I am holding him back and if I put more hours of therapy in, maybe he would have been walking by now. Maybe he could talk more if I spent more time trying to get him to say words. But I don't want to constantly be asking him to repeat words because I don't want him to get frustrated when and if he is trying but it just doesn't come out. I don't want him to think I don't love him/like the way he is, because I do.
Maybe all these things I want for Daniel (walking, talking..) he doesn't want to do and when I push him during therapy, he is thinking I don't accept him? But if I don't push him, will he think I give up on him?
When does the guilt and the questioning of "why" and the "what if's" go away?
Sunday, March 1, 2009
A little bit about Andrea: She is one of the sweetest people we've met on our journey. She was so easy going, and pretty much let us do what we wanted, as many outfit changes as we needed. She'd let us take breaks if Daniel needed a rest. She acknowledged Daniel. That was an important part, walked right up to him, got to his level and talked to him. No uneasy feelings, no nervousness, and Daniel knew right away that she was "good people" and gave her his signature smile. Take a look at her blog and business web site. Her photos are awesome. She owns Mishka Photography, in Michigan and dedicates some of her time to the Littlest Heroes Project. I believe we were her first "Littlest Hero" client, and I will say..."She rocked!" She carted all of her gear and set up in our house. We didn't have to travel or do a thing!! How cool is that?!?! And she captured Daniel's personality with ease.
Littlest Heroes Project: This project is a non profit organization that started up last year by a high school student. Yep, a high school student...again, how cool is that? This project was created for children (1-21 yrs old) who suffer from serious illness or life altering disabilities. To see if your child qualifies or you know someone who does, check it out!
A few lines on the site says,
"This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses."
"We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about. But when everything is done, and either the child has reached the end of their battle, or has proven the odds against it many wish they had more time to stop, and capture the journey that they lived through for so long."
How true is that? Sometimes we just get so caught up in the day to day of having a special needs child, an ill child, fighting battles to get things for our children, stressing about being able to get back to that "normal" life you had before.
This experience with the Littlest Hero and Mishka Photography, let us stop for just a few hours. It let us relax, stop thinking about who we had to call to get something covered by insurance, about therapy, stressing on paying bills, and just let us enjoy each other and have fun while getting some pictures taken. The best thing ever...just being a family. Hopefully people see, we are just trying to be a normal family like they are.....we are a normal typical family, and sometimes its nice to just stop, enjoy each other and smile.