gasp....
WTF did this chick just say??? I AM IN NO WAY SAYING ALS IS NOT A GREAT CAUSE TO DONATE TO OR SPREAD AWARENESS FOR.
BECAUSE IT IS.
ALS is a heart breaking awful disease that we need to find a cure for. That much is unquestionable. But I'm jealous. Let me try and explain myself. Im going to back up a bit here.
Do you know what an orphan disease is? Because I know I didn't.
Until my chid was diagnosed with one.
An orphan disease is a disease that the medical community as a whole has turned their backs on. Pontocerabellar hypoplasia and CASK gene mutation/deletion are so rare that really none is even trying to research them. Let alone find a cure.
I have really LOVED watching everyone come together to get some exposure and some money for an amazing cause. I wish with my entire being that I could start something similar to this for our children. But what would be the point? There is no place to donate to . There is nobody trying to figure this out. One mom started a dance challenge in honor of rett syndrome and the hope that our kids will someday dance. I have been tagged and will make a silly video with sophia soon. Because I'm all for spreading awareness of any kind. But I'm Sad i can't start a PCH challenge that will make an impact on the face of the disease.
Between those of us with children impacted with PCH and CASK we have managed to find a hand full of clinics and researchers who are making small moves on an individual basis. Trying to drum up some interest in the international medical community. But As a whole there is no "find a cure" movement for our children. and its heartbreaking.
Her nuro-genetics doctor told me on the day she was diagnosed that even SHE couldn't find anyone who was leading the reaserch . So i don't have any major revelations on this one folks. Im still working on finding the silver lining to this particular rain cloud in my conscience. But I just wanted to let you guys know.
So that is why I'm jealous of ALS and all the ice bucket victems around the country. Because if I could I would think up some equally cool challenge and start a viral sensation of my own.
Maybe I still will. Bur as usual i search for ways to make PCH and CASK relevant in the lives of the unaffected. That is my personal struggle.
I LOVED watching you guys all go crazy drowning yourselves with ice cold water. good times. but every smile I get from it also makes me a little sad.
I just wanted to share that I hope I can challenge you all someday.
Showing posts with label PCH. Show all posts
Showing posts with label PCH. Show all posts
Thursday, August 21, 2014
Friday, August 8, 2014
Shoes or No Shoes ? That is the question.
I wonder what it is about shoes that sophia hates so much....
Maybe its genetic (lol, I crack myself up) I also dislike shoes..
Yes I am a woman who doesn't give two __ about shoes..
We do exist.
Honestly, I much prefer to be barefoot.
I force her to wear shoes when she is doing her Physical Therapy exersizes or is in her adaptive equipment and at school. But other then that NEVER do I really put them on her.. Why bother?
Why spend extra money and effort on something I know for a fact she will just kick off or pull off? Then I have to chase it around ensuring it doesn't get lost? Bump that....
I used to care, but that was before she figured out how to get them off.
I've figured something out about the world as a result of her shoe-lessness.
People really, REALLY pay attention to a kids feet, it's kinda weird.
Over the past year or so I get asked at least a few times a week by well mannered clerks at checkouts and registers if she's lost them somewhere in the store. I know they are trying to be helpful so I always smile and say we left them in the car. I never really thought twice about it until I saw a young man in a wheelchair a short time ago, without shoes on, only socks.
(which by the way sophia wears everywhere because I do have some manners)
But none asked him why he wasn't wearing shoes or if he had lost them.. noone , but me i guess, seemed to even pay attention to it.
It got me to thinking, why does everyone care so much about HER feet then??
Why all the un-wanted attention about shoes?
Then it clicked. Im not going to lie it was a shameful revelation, mostly because it took another young person with an obvious disability for me to think about it.
She doesn't LOOK disabled . She has no wheelchair...yet...if ever.
THATS why all the stares and questions about where her shoes are. Everyone is amazed that I have a toddler who's not running amuck or totting behind me. They are probably wondering what I did to get her to sit in my arms peacefully all the way around Walmart or the grocery store without so much as one word.( little do they know its her SPD)
She's of size to be speaking and walking. Her physical characteristics are proportionate, she's tiny, but there are no obvious physical characteristics no limb abnormalities. To a passer by she probably looks like a typical small girl. without shoes. I guess people are just making a simple observation and I'm being sensitive. No surprise there.
At first I laughed in spite of myself, and moved on. Then my never ending though process uprooted an interesting observation.
Maybe I'm wrong. Maybe she is getting too big to be in public everyday without shoes. After all she's not a baby anymore. There will come a day when she will need to wear shoes. Just because she doesn't like them doesn't mean she doesn't have to do it. Its not about offending people, I assure you I don't care. Its just that she's growing up. its time. Every single person on earth does stuff everyday they don't like. I don't get to go barefoot to run errands ( nor would I, ....gross)
But it's a matter of principle. Its time that I start to open up her protective bubble. Its time that I start treating her like a three year old girl.
She is not my "baby" anymore. She's a preschooler.
Nobody really ever grows outside of the demand placed on them. Most demands are self imposed or imposed by society. But for sophia, her demands are imposed by me. I fully expect her to do some form of walking at some point in her life. For that she will need shoes. It will unquestionably become a dis-service that I protect her from all the little things she doesn't like. Its going to be a slow process for both of us. but its time we start.
Sophia Needs to wear shoes. Its time.
But first we need go shoe shopping.
Looks like she's not the only one doing stuff she'd rather not do.
At what age did you guys start to make your kids wear shoes everywhere? Was it because they were walking, or because you thought they should? Leave answers in the comment section below!!!
Look for our new website, debuting September 2014.!!!
ps. shoes is an odd word.
Maybe its genetic (lol, I crack myself up) I also dislike shoes..
Yes I am a woman who doesn't give two __ about shoes..
We do exist.
Honestly, I much prefer to be barefoot.
I force her to wear shoes when she is doing her Physical Therapy exersizes or is in her adaptive equipment and at school. But other then that NEVER do I really put them on her.. Why bother?
Why spend extra money and effort on something I know for a fact she will just kick off or pull off? Then I have to chase it around ensuring it doesn't get lost? Bump that....
I used to care, but that was before she figured out how to get them off.
I've figured something out about the world as a result of her shoe-lessness.
People really, REALLY pay attention to a kids feet, it's kinda weird.
Over the past year or so I get asked at least a few times a week by well mannered clerks at checkouts and registers if she's lost them somewhere in the store. I know they are trying to be helpful so I always smile and say we left them in the car. I never really thought twice about it until I saw a young man in a wheelchair a short time ago, without shoes on, only socks.
(which by the way sophia wears everywhere because I do have some manners)
But none asked him why he wasn't wearing shoes or if he had lost them.. noone , but me i guess, seemed to even pay attention to it.
It got me to thinking, why does everyone care so much about HER feet then??
Why all the un-wanted attention about shoes?
Then it clicked. Im not going to lie it was a shameful revelation, mostly because it took another young person with an obvious disability for me to think about it.
She doesn't LOOK disabled . She has no wheelchair...yet...if ever.
THATS why all the stares and questions about where her shoes are. Everyone is amazed that I have a toddler who's not running amuck or totting behind me. They are probably wondering what I did to get her to sit in my arms peacefully all the way around Walmart or the grocery store without so much as one word.( little do they know its her SPD)
She's of size to be speaking and walking. Her physical characteristics are proportionate, she's tiny, but there are no obvious physical characteristics no limb abnormalities. To a passer by she probably looks like a typical small girl. without shoes. I guess people are just making a simple observation and I'm being sensitive. No surprise there.
At first I laughed in spite of myself, and moved on. Then my never ending though process uprooted an interesting observation.
Maybe I'm wrong. Maybe she is getting too big to be in public everyday without shoes. After all she's not a baby anymore. There will come a day when she will need to wear shoes. Just because she doesn't like them doesn't mean she doesn't have to do it. Its not about offending people, I assure you I don't care. Its just that she's growing up. its time. Every single person on earth does stuff everyday they don't like. I don't get to go barefoot to run errands ( nor would I, ....gross)
But it's a matter of principle. Its time that I start to open up her protective bubble. Its time that I start treating her like a three year old girl.
She is not my "baby" anymore. She's a preschooler.
Nobody really ever grows outside of the demand placed on them. Most demands are self imposed or imposed by society. But for sophia, her demands are imposed by me. I fully expect her to do some form of walking at some point in her life. For that she will need shoes. It will unquestionably become a dis-service that I protect her from all the little things she doesn't like. Its going to be a slow process for both of us. but its time we start.
Sophia Needs to wear shoes. Its time.
But first we need go shoe shopping.
Looks like she's not the only one doing stuff she'd rather not do.
At what age did you guys start to make your kids wear shoes everywhere? Was it because they were walking, or because you thought they should? Leave answers in the comment section below!!!
Look for our new website, debuting September 2014.!!!
ps. shoes is an odd word.
Wednesday, August 6, 2014
13 inches to My Heart
Recently Sophia has learned to do something.
This is something I never ever imagined would happen. It was something that I secretly didn't like to watch other kids do, because it was a reminder of my own lacking.
I didn't tell anyone outside my immediate family about it , there was no excited Facebook post proclaiming her new ability. (even a broken clock is right twice a day. )
I was afraid it was just chance or luck the first time it happened. There are certain things i have just accepted as truth because well its just easier then holding out hope in some areas...
but much to my utter amazement it continues !
I bet your asking yourself what did she do.... ?!
the answer may seem rather simple to you...... She reached for me. thats it.
You know how at about 7-9 months maybe even before that , kids start to reach up for their moms?whenever mom approaches they look up , smile and reach out their arms?
Well its something sophia never did. It never emerged, much like all of her other milestones it was severely delayed.I'm still not sure if or what milestones she will hit or when.
So when anything new happens, its HUGE for us.
It shows that her brain is growing , she is making connections, she is learning. New skills are the only goalposts i have to gauge her on. Its like a ray of hope sent from above. Another dose of mommy motivation for me to keep at it. To continue working her body through the motions everyday. To keep putting her in her adaptive equipment. Not to give up or give in. Its black and white proof that what i am doing everyday matters.
Its my validation..
It literally melts me, breaks my heart in the best way.Fills me with pride . She makes me feel like the luckiest one on the planet. She does it for her father too (usually when she wants to be saved from me).
She has Sensory Processing Disorder, meaning that lights, sounds, noises, textures, and certain environments can be extremely overwhelming for sophia. So as a small baby she didn't reach out for anything.. AT ALL. not toys, not her bottle, not us.. nothing. it was heart breaking to watch and realize.. that your child is literally afraid of everything....and it pissed me off , like most other things about her condition.. I resented it so severely. To this day we still have mountains worth of work to do in the SPD department. BUT i will say she is interacting with her bottle a bit, Plays with a very specific set of stuffed toys and blankets and now i can proudly say SHE REACHES FOR US TOO !!!
She's doing it, She's winning this fight. I don't know how she is beating the odds, but my god she IS..
I just can't tell everyone how proud I am to be able to say this. Its so easy to sit in your my misery, to believe whole hardly that the sky is always on its way down.
But thank god for this little girl.
She is they only person in my life that can't speak with words, yet she always knows exactly how to get the right message to my soul. She always knows the exact moment i need some hope or a sign the most.
Never have I ever doubted that she was meant to be mine. Our connection is so strong that I swear I have loved her before, over the course of a thousand lifetimes. Like she has always been mine.
Some people can go their entire existence and not feel 1/10th of the love that sophia shows me. She gives me everything without even knowing she's doing it. I am so blessed to be allowd such pure love. When she looks up at me and in that split second realizes its me. She smiles a huge open mouth smile. kicks her legs wildly. and then it happens..
She extends her two small arms reaches about thirteen beautiful inches straight to my heart .
(a few weeks back at a GI Appt )
This is something I never ever imagined would happen. It was something that I secretly didn't like to watch other kids do, because it was a reminder of my own lacking.
I didn't tell anyone outside my immediate family about it , there was no excited Facebook post proclaiming her new ability. (even a broken clock is right twice a day. )
I was afraid it was just chance or luck the first time it happened. There are certain things i have just accepted as truth because well its just easier then holding out hope in some areas...
but much to my utter amazement it continues !
I bet your asking yourself what did she do.... ?!
the answer may seem rather simple to you...... She reached for me. thats it.
You know how at about 7-9 months maybe even before that , kids start to reach up for their moms?whenever mom approaches they look up , smile and reach out their arms?
Well its something sophia never did. It never emerged, much like all of her other milestones it was severely delayed.I'm still not sure if or what milestones she will hit or when.
So when anything new happens, its HUGE for us.
It shows that her brain is growing , she is making connections, she is learning. New skills are the only goalposts i have to gauge her on. Its like a ray of hope sent from above. Another dose of mommy motivation for me to keep at it. To continue working her body through the motions everyday. To keep putting her in her adaptive equipment. Not to give up or give in. Its black and white proof that what i am doing everyday matters.
Its my validation..
It literally melts me, breaks my heart in the best way.Fills me with pride . She makes me feel like the luckiest one on the planet. She does it for her father too (usually when she wants to be saved from me).
She has Sensory Processing Disorder, meaning that lights, sounds, noises, textures, and certain environments can be extremely overwhelming for sophia. So as a small baby she didn't reach out for anything.. AT ALL. not toys, not her bottle, not us.. nothing. it was heart breaking to watch and realize.. that your child is literally afraid of everything....and it pissed me off , like most other things about her condition.. I resented it so severely. To this day we still have mountains worth of work to do in the SPD department. BUT i will say she is interacting with her bottle a bit, Plays with a very specific set of stuffed toys and blankets and now i can proudly say SHE REACHES FOR US TOO !!!
She's doing it, She's winning this fight. I don't know how she is beating the odds, but my god she IS..
I just can't tell everyone how proud I am to be able to say this. Its so easy to sit in your my misery, to believe whole hardly that the sky is always on its way down.
But thank god for this little girl.
She is they only person in my life that can't speak with words, yet she always knows exactly how to get the right message to my soul. She always knows the exact moment i need some hope or a sign the most.
Never have I ever doubted that she was meant to be mine. Our connection is so strong that I swear I have loved her before, over the course of a thousand lifetimes. Like she has always been mine.
Some people can go their entire existence and not feel 1/10th of the love that sophia shows me. She gives me everything without even knowing she's doing it. I am so blessed to be allowd such pure love. When she looks up at me and in that split second realizes its me. She smiles a huge open mouth smile. kicks her legs wildly. and then it happens..
She extends her two small arms reaches about thirteen beautiful inches straight to my heart .
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