I am loving all the Halloween pictures of peoples kids (even the "big kids") all over Facebook today. Everyone is so cute and seeing a flood of smiling faces always makes for a great day!
Today, Jocelyn and I got dressed in all black and attempted to make our faces look like cats -- well, mama was a cat and Jocelyn was my kitty. :)
I was even able to use some creativity to ensure Jocie had cat ears. Since Jocelyn doesn't like things to be on her head, I took some construction paper this morning and cut some ears, left a little flap and then snapped them on with barrettes!! Genius right?!
We had things to do this morning but first, we stopped at daddy's work to give him some love, drop off some yummy Halloween goodies and snap a pic.
Today was a spooktacular trick-or-treating event with the TARC peeps!!
Jocie even got a picture with her TARC coach -- she's more like family now though.
{Sarah is the prettiest -- Inside & Out! Oh, and that awesome blinking pumpkin necklace that she has around her neck? It apparently was no match for little miss grabby-grabbington. She pulled one of the pumpkins right off!}
Going to TARC's Halloween bash was the bestfirst Halloween experience for Jocelyn that I could ever ask for. Several of the staff that were passing out candy had Big Mac Buttons which Jocelyn could push that would say "Trick-or-Treat" or "Thank You" which was wonderful since Jocelyn doesn't sign or verbally say these things. Its rewarding to have a "voice" and I thought the staff using these devices was extremely thoughtful of them.
Also, Jocelyn was allowed plenty of time to look, pick and grab whatever she wanted from each of the candy baskets. Its so nice when she's given the opportunity to do something by herself. Even though Jocelyn was a bit sleepy at first, towards the middle of our adventure, she was soaking up all the attention she was getting from everyone. People were raving about her cute costume, how "awesome" her wheelchair was (we used her "hi/low base" which made it easy to raise or lower her to whatever level the people were at today), and she was loving every minute of it. She thought the best staff costume was the lady wearing a huge Goofy hat and the lady with the big fluffy bunny ears. It was a good thing no one was behind us because that Goofy hat had us on lock down for a while! Jocelyn wanted to thoroughly explore Goofy's bright eyes, big black nose and the sweet lady behind the hat.
Half-way through our trick-or-treating we stopped at the TARC's playground and had ourselves a swinging break.
Today has been so much fun and I'm thankful that I'm able to experience everything with our sweet little girl. She is far sweeter than any candy could EVER be!!
We hope you all have a Bootastically fun-filled day with enough candy to rot your teeth!
Lately I have absolutely no idea where the days and weeks are disappearing too. One minute its Monday, the next its the weekend, and then we're already starting another week. Apparently between working really hard to establish a true preschool curriculum for Jocelyn, still getting in a fair amount of her therapy, going to & from appointments, cleaning house, working out, cooking and all the other million things a mama and wifey does --- I've lost total track of time!! I sure do enjoy the moments like this though...
Can you believe tomorrow is the last day of October? ANNNNND...
IT'S HALLOWEEN!!!
We are going to be participating in the TARC's Halloween program tomorrow and Jocie's going as a cat. I know, kind of lame and especially since I wanted her to go as a lamb since her all time favorite book...and I'm talking about F.A.V.O.R.I.T.E book...is called God's Little Lamb. Thank you Nicole Zadina for sending Jocie this book so long ago even if it makes me bonkers sometimes.
So a cat babe Jocelyn will be --- hey, I just said time got away from me and we actually already have everything to make her look sort of like a cat. Besides, every kid needs a ghetto-looking costume at some point in their lives, and now sounds like a good time for Jocelyn! Ha!
My favorite ghetto costume from back in the day was when all five of us kids went as California Raisin Men. Nothing like black tights, stuffed trash bags, white gloves and some "I Heard It Through the Grapevine" tunes!! Oh Marvin Gaye how I love you!
{Wish I had a real picture of us!}
For a quick flashback to the 1980's, and because you might want a quick giggle and grove out session...
Jocie going as a cat is simple and she still will be able to fit into her wheelchair if needed. We are going to do all black clothes, shoes and paint her face. I wanted to give her some kitty ears but the girl does not want anything on her head...ever! I must've scarred her for life back in the day when I put so many monstrous bows on her head. Well that, and the fact that she's had brain surgery three times --- that's enough for anyone to tell you to get the hell away from their head! :|
{Look at this chunky cutie!!! See, told ya I liked the big bows/flowers! ...just couldn't help myself!}
The last week or so we've done lots of Halloween type activities, some partly as preschool activities, that ranged from playing with pumpkin guts, to making sandpaper pumpkins, collage ghosts and glow ghosts, and different spider activities.
Below are a few pictures of our Halloween fun -- enjoy! :)
{Justin getting started -- I think LED lights inside the pumpkin works great!!}
{Poor girl, mama made her get E-Stim even while playing with pumpkin guts. She was soooo totally grossed out at first, but apparently warmed up to them.}
{Glow Ghosts: milk jugs, marker & LED light -- J had a blast with these last night -- lots of giggles for sure!} {Pacman Ghost: construction paper, cotton balls, streamers & foam for face -- She wasn't a fan of cotton} {Sandpaper Pumpkin: Fine & coarse paper, paint & glue -- She was TICKED OFF but still painted} (Spider Handprints: black paint & googly eyes -- this turned into a giggling splatter paint fight -- so fun!}
Fall/Halloween is such a fun time!!!
Already got some fun ideas for Jocelyn come winter and hopefully she will like at least a few of them! :P
My passion in life dramatically
shifted once we gave birth to our babygirl. Over the course of our daughter's 2
1/2 years, my passion has shifted yet again for fighting for the special needs
she has acquired, for her to be given the opportunity to succeed, for her not
to be viewed as a number or a diagnosis, for her to be seen and treated like
any other beautiful child, to ensure she receives the best medical care
possible, for her to attain the necessary therapies/equipment/devices to have a
great quality of life, for her to always have a voice even if she cannot use
her own, for her to learn what courage and perseverance is from her parents,
for her to always be seen as a bright, intelligent, worthy, capable little girl
and someday ... as a young woman.
There has been a lot of uproar over
a tweet by Ann Coulter regarding the last presidential debate. The statement
Ann Coulter made on October 22, 2012 was "I highly approve of Romney's
decision to be kind and gentle to the retard."
Wait -- did you catch that? She, as
a public figure (even if she wasn't one), regarded the president as a retard
and even worse, used that word like a "retarded" person is something
of shame or as a person that is beneath her!
No one should be shocked by this
woman's incessantly nasty comments. Back in the 2008 presidential campaign, she
directed derogatory remarks towards the presidential candidate John Edwards by
commenting "turns out that you have to go into rehab if you use the word
'faggot'!" Apparently it was felt that she was insinuating that Edwards
was a faggot which not only offend him but deeply insulted the Gay &
Lesbian groups. Coulter seems to take pleasure in targeting political groups,
specific religious affiliations such as the Jewish community, our military,
obviously has no regard to the special needs community (which is A LOT of
people by the way) and at times her targeting people seems to know no bounds.
Didn't I just write about bullying
-- she is definitely a bully amongst other things. The fact that she takes great
pleasure in her sharp tongue, is truly disgusting!
Simply reading about her past
history of asinine comments proves that she has attempted, and continues to
attempt, to attack every type of special interest group out there. I have to
say, her past speaks for itself and she's not making any attempts to grow and
develop as "Christian Woman" that she so proclaims. I hate it when
people so loosely throw around the comment about "being a Christian"
because trust me, her words and actions do not even remotely define a true
Christian.
There is a large number of people
who would be outraged by her statement on Monday and would want to see her
slaughtered (not literally of course, but in terms of publicly taking her out),
and then another group would argue, "She lives in America ... it’s called
Freedom of Speech!" Yes, both sides are correct in their view points ... I
suppose.
I of course feel like people who try to defend their idiotic,
heartless comments by quoting "its freedom of speech" are cowards and
like that somehow gives them authority to attack or hurt whomever. I'm more likely to view her as a shallow, vindictive woman merely seeking
for attention to achieve fame. I suppose her approach is working because
everyone is talking about her and here I am writing about her.
Perhaps Coulter's statement strikes
a chord with me because fairly recently as I again was standing in a checkout
line with my cart and Jocie at my side in her wheelchair, I had a lady tell me
"I use to work with retarded kids like your daughter." For the sake
of getting all fired up and ruining several hours of my day, I will not go into
detail about how her careless assumption played out. What I will say is that
yes, Jocie is not mobile and therefore requires a wheelchair for locomotion at
this time; yes, she often doesn't make eye contact and looks up and around
leading you to believe she might not know or understand what is going on around
her; yes, she makes weird facial and body movements and sounds when she is
excited but what all these things DO NOT MEAN -- is that she is even
remotely retarded!! Anyone who would dare to think so is ignorant!!!
You see, this will be a great battle
for us as parents when Jocelyn approaches public school age. It will be a
challenge to test and prove cognitive skills to school officials who use
testing approaches that require vision, fine & gross motor skills and
verbal communication skills ... all of which Jocelyn has difficulty doing even
though her receptive comprehension is more than intact!
I have digressed slightly ---
Even though I have spent time on
discussing Coulter's disrespectful approach to the human race in general, I had
to talk about her in order to express my admiration for how John Stephens
responded to her remark.
Prior to this incident, I had no clue of this man named John
Stephens. Mr. Stephens is a man with so much intelligence, grace and class that
puts even the most disgusting woman to shame with his words of wisdom, truth
and beauty. Below you can read his response to Coulter's statement. I would be
so honor to call Mr. Stephens my friend and will try and learn from his humble
response.
Dear Ann Coulter,
Come on Ms. Coulter, you aren’t dumb
and you aren’t shallow. So why are you continually using a word like the R-word
as an insult?
I’m a 30 year old man with Down
syndrome who has struggled with the public’s perception that an intellectual
disability means that I am dumb and shallow. I am not either of those things,
but I do process information more slowly than the rest of you. In fact it has
taken me all day to figure out how to respond to your use of the R-word last
night.
I thought first of asking whether
you meant to describe the President as someone who was bullied as a child by
people like you, but rose above it to find a way to succeed in life as many of
my fellow Special Olympians have.
Then I wondered if you meant to
describe him as someone who has to struggle to be thoughtful about everything
he says, as everyone else races from one snarky sound bite to the next.
Finally, I wondered if you meant to
degrade him as someone who is likely to receive bad health care, live in low
grade housing with very little income and still manages to see life as a
wonderful gift.
Because, Ms. Coulter, that is who we
are – and much, much more.
After I saw your tweet, I realized
you just wanted to belittle the President by linking him to people like me. You
assumed that people would understand and accept that being linked to someone
like me is an insult and you assumed you could get away with it and still
appear on TV.
I have to wonder if you considered
other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and
society, need to learn that being compared to people like me should be
considered a badge of honor.
No one overcomes more than we do and
still loves life so much.
Come join us someday at Special
Olympics. See if you can walk away with your heart unchanged.
A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia
Let me just say before I even begin telling this story/experience, that I respect my elders and I feel they deserve that respect even if they are not always agreed with. However, no matter the age, gender, religion, education or success level ... I WILL NOT TOLERATE A BULLY!
On Monday, Jocelyn and I had to run over to Lawrence to do a number of errands, which included going to the library to get books for her preschool curriculum. Of course we had to hit the restroom first and then headed towards the children's section. As we were walking into the children's section, I see a young girl (maybe pre-teen) being led into the library by a young man (maybe early 20's), and they too were headed for the children's section. It was immediately apparent to me as they were walking, that the young girl most likely had something that resembled Autism, but of course I was just taking a guess from first impression. Either way, nothing that I saw bothered me in the slightest ... just made an observation.
Jocelyn and I sat next to the computers to look up some books, and the young man and girl sat close to us in the comfy couch section. As we were doing our thing, we suddenly heard this bewildering yelp from the young girl which was immediately followed by the young man saying "we are in the library and we don't do that in here." He didn't correct her in a mean fashion, just made that statement. Instantly the girl did it again even louder and the guy said "if you keep doing that then we are going to leave ... you need to come near me and play." Again, I didn't see anything wrong with how he talked to her, his tone, his manner of correction/guidance and really, she didn't bother us with her "noise." I mean seriously, we were in the children's section and so what, because she has some uncontrollable condition she can't be in there? She wasn't being that "disruptive" and the people present were far and few between.
So anyhow, after the second little outburst (I guess you could call it that), an elderly woman (I would guess at least 70's) came over to the young man and asked "Is that girl with you?" Of course he replied "Yes" and the woman proceeded to ask where her mother was and so forth. At first I thought maybe she didn't like seeing a younger girl with a young man ... that could be a reasonable objection perhaps? The young man explained that he was her caregiver, the mother was at work and all the while he seemed really distraught. The woman pressed on with more questions in an extremely disapproving voice and the young man explained to her that the young girl did in fact have Autism, that it had been a bad day and sorry for the outburst.
I kept thinking, "What are you apologizing for? She's not bothering anyone and it was a simple little yell that lasted maybe a millisecond! Why are you even answering this lady's questions and why does she care so damn much?"
So the elderly lady continued to pester the young man and ask for the mother's number so she could inform her of how this young man provided care, asked what his name, who he worked for and so on. The guy was actually going through this phone to get the numbers for the lady to write down!! What?! It was obvious that the young man was getting really upset (and not like angry, we are talking more emotionally upset as in tearful), and actually looked more desperate for help than anything. He asked the elderly woman what she was so upset about and she said, "I think you could be doing a much better job with her than you are, and someone should know about it."
At that time I got the young man's attention and said "Hey, listen to me, you are doing an excellent job ... don't let some stranger get you upset." In the very next breath I told him he doesn't need to explain anything to anyone and definitely not give out personal information like the girls condition, names, phone numbers, etc. The elderly woman looked at me with this glare, like I really cared, so I glared right back at her square in the eyes because I'll be damned if she was going to intimidate me. As she glared at me I told her "Ma'am, I don't think you perhaps understand the situation ... she isn't bothering anyone." She then condescendingly said, "Oh no little lady, I understand perfectly. I was an educator for many years. Oh I understand." Of course you can probably imagine my reaction because like I said, I don't care who you are or what you've done, it doesn't give you the right to belittle or be aggressive towards someone over nothing.
It was more than apparent that the guy was trying to care for this young girl. And again, I know that some caregivers aren't the best, I've seen it myself in the clinical setting and when I worked for the state, but from what you could gather at that moment, he DID care and was trying his best. It's not an easy job caring for a person that has behaviors, physical disabilities and the list goes on and on. Its more taxing (yet can be supremely rewarding) than anyone could possibility imagine unless you've experienced it first hand!
I suppose the lady thought her comment would shut me up, but that wasn't happening. Apparently she didn't know I wasn't your run-of-the-mill stranger that was going to idly standby and not intervene. I'm telling you, her behavior was absurd!!! As the elderly woman pressed for more answers and demanded the names and numbers of everyone, I eventually told the lady it was none of her business and she needed to leave the young man alone. She still wasn't getting the message, so I proceeded to tell her that she was the one with the problem, that even with her "education" that she apparently knew nothing of Autism and that SHE was the one being rude and disruptive.
It was either because of the growing audience or my tone, but the library staff in the children's room came over to us to intervene and made the lady leave.
Shortly after that unexpected episode, Jocelyn and I checked out our books and were on our way to finish the rest of our errands. To my surprise, as we walk about the door, the old lady was outside WAITING FOR ME!!! Are you kidding??!!! As soon as she saw us, she got up and started to walk towards us and I immediately put up my hand, looked at her and said in my most authoritative voice "Look lady, don't even waste your breath ... I have NOTHING to say to you!!"
After I got Jocie and I into the van I sat there thinking, "What the hell just happened? Where do these people come from?" Just as I was starting to feel guilty for being so ugly to the woman, I thought of my own brother and how badly he was bullied throughout most his life.
You see, my brother (all my brothers in fact ... I'm the baby) is older than me, and I always thought he could take care of himself. A lot of times I would think to myself "I'm a girl and younger ... how would I get people to stop bullying him? Do I really want to get involved ... my life is hard enough!" But was it? Was it really in comparsion to his? Now, I don't think it was. When your in middle school and high school things seem tough for everyone. You are always criticized for what you do and don't do, or if you are "different," and sometimes you are just thankful to make it through another day. Often times I was viewed as the one with a "I don't give a damn attitude" and a lot of the time that was true, but not as often as people may have thought. Or people would say "you just do your own thing all the time" and again, that was often true. I had an out-of-town boyfriend, worked nearly full-time and basically wasn't all that involved in my class' high school drama. Later in life I had high school friends tell me they were "scared" of me and of course I had to laugh because I would think really?
When I think about my brother and everything he endured, my heart aches so badly. I would pass him in the hallways at school and I distinctively remember the look he would have in his eyes. That look like he wished someone would just reach out and give him a hi-five to let him know they liked him and that he existed. That look like hey, let me know that I matter ... that you're on "my side!" Shamely I would often ignore it. Who does that? Geez, now I'm going to make myself cry this morning! What you do and don't do can effect you for a lifetime!!!
I'm telling you here and now that I regret not being a stronger person then, and especially for someone that I love and care about. I'm sure I didn't stand up for him because I was a teenager myself and going through my own issues, but I know now that they weren't anything like what he experienced. He needed me, and others, and often times no one was there. Please know that then, even now when I get mad or frustrated at you, that I LOVE YOU brother ... very much! I'm sorry I wasn't there for you when you needed someone. You and Jocelyn have inspired me to stand up for people who can't. I will never allow someone to be bullied or hurt in my presence ... ever! I love you both!
Since Baldwin City is a little over 45 minutes, I knew ahead of time that Jocelyn and I were going to have to be up and at it early so that we could eat breakfast and get there in time for registration.
Lucky for me (ONLY on occasions like this), Jocelyn was up and ready to go at 5:15am and I didn't have to feel bad about waking her early.
{She looks guilty early in the morning}
After getting Jocelyn fed and doubly clothed (it was chilly this morning people), we were out the door by 7:15am and ready to get to the Baldwin City Golf Course.
{This was Jocelyn 5 minutes into the car ride. Apparently she was giving me the message that I was on my own! I'm thinking the extra clothes and daddy's blanket made the magic comfy combo.}
Once we arrived to the golf course, we got registered, used the oh so glorious port-a-potties (they even had a handicapped one so I was able to bring the stroller in with me -- I'm sure Jocie was thrilled to get to participate in that one!) and then we played around until the race started.
{Whooo's Whooo's cute? Yep, Jocie}
So here we are, about to start the race and we are all directed onto the golf course. Then it hit me -- "we are running on THIS??!!!" I have been accustomed to seeing the nicely trimmed, EVEN and smooth golf course of the lake. Long gone were the memories of a rural golf course from my cross country days.
This course had massive divots, holes in fact, mounds of grass and crazy slippery, muddy hills. At first I thought, "maybe this won't be as bumpy as I'm thinking and who knows, it might be nice pushing a stroller in grass." Wrong -- wrong -- WRONG!!
We got about a quarter into our first mile and I had to stop! Jocelyn has pretty good head control now, but it's still not super awesome when in motion. She was being tossed all around inside that stroller even with being belted in and snugged down with a big blanket.
Initially I was kind of ticked off because I specifically asked the guy who was in charge of this race if a stroller would be appropriate for this course, and he was like, "Oh definitely!" Either he has no concept of pushing a jogging stroller while running, or he outright lied to gain another race entry.
So ultimately I "donated" my race fee to the Baldwin Wrestlers, but no matter, I chalked it up to lesson learned and we left the golf course and did our own 5K. :)
After we were finished with our own "race," we had some time to kill before riding the horses, so we chillaxed in the back of the van and watched Mickey Mouse Clubhouse while eating grapes!
{Mickey Mouse is one exciting little dude!}
{Here I was trying to get a "smiling" picture & Jocie was hammin' it up!!! Love it -- she's always showing me the way!}
Even though our 5k was a total bust, we made the best of the morning and had fun doing it!!
After nap time yesterday, Jocie and I were going to take off for a run in the jogging stroller (we have a race this Saturday at the Maple Leaf Festival bright and early), but uh, it was crazy cold out and the wind had a major bite! I'm hoping come Saturday, that if it's going to be cold, that maybe we can get lucky and there will be no wind.
So instead of a run, we had a Fall spice painting party!!
During nap time I decided to make some pumpkin pies. It smelled so deliciously yummy in the house, that I thought Jocie might want to do a smellrific activity herself! :)
{My 1st homemade pumpkin pies turned out good! :) I only have one glass pie pan though -- go figure. Oh well, I found a dish that was close to a pie dish and it worked great! I can't believe how good they tasted.}
Not every spice we played with was a "Fallish" type of spice, but some of the good ones were cinnamon, cloves, nutmeg, pumpkin, chili powder, chai tea and coffee. The other spices were fennel, turmeric, dill, mustard and cumin. Jocelyn wasn't a big fan of the coffee -- shocker, and the chili powder definitely made her sneeze and then she'd laugh. Too cute!
When we got started I couldn't decide how or what to use. I got out two different types of glue (even spray glue which wasn't the best idea), foam sponges, different spoon-type things for scooping, etc and none of that really worked well. Jocelyn kept reminding me that using our hands and getting messy is far better than anything else.
{After some encouraging, she participated and I think enjoyed all the different smells. It helps when you smell it first, make a big deal about it, be over-the-top goofy and then let her try. Encouragement helps us all doesn't it?}
This little craft was a bit messy but at least it was a good kind of aromatic fun. Justin came home shortly after we were finished and was like "It smells good in here ... kind of like pumpkin pie mixed with a lot of other stuff." Ding, ding, ding! We have a winner! haha At least he noticed! :)
In other news, Jocelyn will have one more week of preschool and then we will be removing her from a paid-based preschool and into a structured home-based preschool. I didn't want to wait the full month to withdrawal Jocelyn, but with Justin's influence and the fact that we've paid for a full month, I agreed to wait.
While watching Jocelyn at preschool yesterday, I was able to talk to my good friend Carrie (it has been FAR too long since we've chatted or seen each other), but she was so sweet to let me vent and discuss my desires, fears and ideas. After we were finished talking, I had never felt so determined, at peace and sure of my next step.
Seeing how Carrie has been successful at preschool with her oldest daughter, she directed me to www.abcjesuslovesme.com. Before I made those pumpkin pies during nap time, I poured myself into this website. Prior to putting Jocelyn into an outside preschool, I know that I did a lot for her (and I'm definitely sure of this now), but found myself needing some structured educational-type guidance or a curriculum of some sort.
As I dissected this website I became increasingly excited!!! This site is so simple to use, has everything laid out for you, explains and directs you in the curriculum step-by-step, its FREE, things can be easily adapted, gives you guidance yet flexibility and the best thing? Its Jesus based!!! When so much is laid before you, it's easy to forget that although its important to invest in Jocelyn's physical life, her spiritual life is what is of far greater importance. We will all lose our bodies one day, they will fail us, they will wither -- the only thing that can remain strong, and get stronger over time, is our spiritual life.
I finally realized yesterday what my struggle has been all along. It's difficult to try and teach a person when you are not getting feedback that they understand, comprehend and are able to demonstrate that they are truly "getting it." So here was the problem - we work with Jocelyn in regards to all things physical, visually try to help her and of course also provide educational elements.
When you are working on so many facets of a persons life, and not seeing much progress in those areas, its easy to become discouraged and wonder why your even trying. But here's the thing, Jocelyn will NEVER get the one-on-one that I can and will provide while simultaneously providing a wide range of repositioning/strengthening needs. At home we can go at any pace we desire, take a break whenever needed, there will be consistency, we can learn sitting in the wheelchair, in the stander, in the walker and so forth.
And the thing that was the most liberating for me?
All I can do, is try my very best!! Try my best to provide all the learning and socializing opportunities that I can, and be intentional with my actions every step of the way. It is not my job to MAKE Jocelyn learn -- NO BODY CAN DO THAT!
It is however my job to give Jocie the resources to learn, foster a learning atmosphere, adapt anything and everything so that she has the opportunity to learn in the best manner possible, to be positive and encouraging, to be flexible, constantly learn myself, adjust teaching techniques when necessary, and allow someone to guide and help me when needed.
Who knows what we will do in the future? We may try a different preschool later on or when Jocelyn is older, but for now, we have a clear game plan that I am VERY excited to start!!!
Yesterday we had an appointment with our Pediatric Ophthalmologist in Kansas
City. He is the doctor that did Jocelyn's strabismus
surgery in June 2011. Strabismus surgery is a procedure that basically severs
the extraocular muscles in an attempt to correct the misalignment of the eyes.
Jocelyn's eyes had the tendency to cross both independently and at other times
cross together. How can anyone ever see ANYTHING correctly if their eyes keep
crossing? So, we decided that even though she might have to have the procedure
again later in life (this would be because the brain keeps telling the eyes to
do things we don't want them to do), it was worth giving her the chance early, to see as much as she can
with the best picture quality as possible.
We haven’t seen our eye doctor in approximately 7 months, but before I tell
you about the appointment, for those of you that might not know, let me tell
you why Jocelyn needed strabismus surgery.
After Jocelyn was born at 28 weeks gestation, she sustained a Grade IV Intraventricular
Hemorrhage (also known as IVH) on both sides of her brain (this is the highest
grade of brain bleeds you can have). Bleeding in the brain can be common in
preemies related to underdeveloped cellular/brain structures and often the lack
of oxygen and blood flow to the brain. The lack of oxygen and blood flow causes
the blood vessels in the brain to rupture and therefore bleed.
When Jocelyn's brain began bleeding, she started having seizures which was
the first sign she had sustained brain trauma. We were hoping the results would
come back that she only had a Grade I or II, as these are the more common
grades of bleeds and rarely have additional complications; unfortunately, we
did not get so lucky.
Since Jocelyn sustained Grade IV bleeds, this meant that there was not only
bleeding inside the brain ventricles but also into the actual brain tissue
itself. This of course caused structural damage to the brain leaving pockets,
or holes, in the brain where there is no brain tissue which is known as
periventricular leukomalacia (PVL) (also
known as PVL). Additionally, because of the structural damage and blood clots,
Jocelyn’s brain lost its ability to circulate, and absorb, her cerebral spinal
fluid (CSF) as originally designed.
The blockage of her CSF only made things worse by causing post-hemorrhage
hydrocephalus. Post-hemorrhage hydrocephalus caused Jocelyn to require a whole
slew of ventricular taps to remove the excess fluid from her brain ventricles
to relieve the ever increasing intracranial pressure. A ventricular tap is when
the neurosurgeon inserts a needle (in her case it was a butterfly needle with a
60mL syringe attached) and then the surgeon withdrawals the excess CSF. Trust
me when I say, NO PARENT SHOULD EVER
HAVE TO EXPERIENCE THIS!
We didn’t have to be present for the ventricular taps, I’m sure the hospital
staff would have rather we not have been, but we were there for every single
one of them. The surgeon didn’t really like to be “watched” and would at times
try to get in & out before we could get there, but there were a few nurses
who were exceptional at contacting us the very second they caught word he was
coming. You want to see a mama hoof it? I could’ve won some Olympic medals at
times. To watch, to cringe, to feel completely helpless and forever have these
images embedded into our brains, was something we wish we would’ve never had to
experience. We would have never allowed Jocelyn to go through something like
this without us right there next to her every step of the way. Some might think
a baby might not know the difference but I don’t care, I don’t believe that. She
had no choice but to be courageous, and we as her parents, somehow suddenly had
to mustard up all the courage we could, and anxiously standby and watch. For me
personally, I’ve never known what total helplessness felt like … now I know and
wish I didn’t.
Once Jocelyn was of appropriate weight and physically stable, she received a
ventriculoperitoneal shunt (or known as VP shunt). As of now, we are on our 3rd
VP shunt and it’s been going strong since August 2010. That’s something worth
praising!!!
With having two VP shunts fail within two months, I find myself constantly
fearing that her current shunt has malfunctioned as well. Signs of shunt
malfunction are increased intracranial pressure which manifests as vomiting,
changes in eye function such as vision quality &/or eyes turning downward,
sleepiness, irritability, seizures and so forth. Some of these symptoms typical
kids experience and it’s pretty torturous when every time your child has a
vomiting spell, is irritable or lethargic that you fear for their life.
{Here is how the VP Shunt is inserted
and relatively what it looks like}
{Jocelyn's current shunt is in her
right frontal lobe, wraps around her ear, down to her neck and into her abdomen.
She has approximately enough tubing coiled in her abdomen that she could grow
6ft tall.}
Here is a little clip to show you part of what this surgery entails. What you will see below is the insertion of the catheter through the brain tissue and into the brain ventricle. The clear fluid is the excess CSF. The catheter is capped/connected to the tubing so that the CSF will drain in the abdominal subcutaneous tissue.
{Here is a more in-depth depiction of a shunt surgery -- kind of graphic}
Jocelyn’s head trauma has caused a whole array of problems such as spastic quadriplegic
cerebral palsy, cerebral vision impairment, difficulty with speech and eating,
fine and gross motor delay and so forth.
So what does this mean in regards to Jocelyn’s vision and why we even see an
Ophthalmologist? The blood that spilled out of her brain ventricles and into
her brain tissue damaged the sensitive vision receptors which lie just along the
outside of the brain ventricles. So this means, even though Jocelyn’s eye
structures where intact (ie blood vessels, retina, etc) she still couldn’t SEE!
We were not at all prepared for this because the eye doctors that saw Jocelyn
in the NICU continually told us “her eyes are great … she’s going to see just
fine” and this was, and continues to be, not the case. In case you didn’t know,
our eyes take a picture and we SEE with our brains. Since Jocelyn’s brain had
been damaged, she couldn’t process the picture she was taking.
For the greater part of Jocelyn's first year of life she couldn't see much
of anything, but through the guidance of organizations like Infant Child
Development and the Children's Center for the Visually Impaired, with the
assistance of physicians such as Dr. Lawrence and Dr. Olitsky, and some REALLY
hard work, we have been able to tap into a great deal of Jocelyn’s secondary
vision pathways that are located throughout the brain. Jocelyn's vision is not
perfect and it never will be, however, when we she got strabismus surgery (many
physicians do not feel that in the case of brain damage, that this surgery is
helpful) her whole world changed.
{Here is an example of strabismus
surgery. Jocelyn only required her inner ocular muscles worked on just like in
the picture below. Afterwards her eyes were blood red and we were told it feels
like you had sandpaper is in the eyes. Pleasant huh? Poor babygirl --- as if
she hadn't already been through enough}
{What Jocelyn's eyes sometimes would do BEFORE surgery}
{Jocelyn's eyes AFTER surgery. They were much less red after a few days. That smile is always so heart-warming!}
So anyways, I'm getting WAY LONG WINDED!!!
The exciting thing was that the doctor was extremely pleased that her
eyes are continuing to not cross and look "dang near perfectly
straight!" I was so excited for good news that I said "heck yes
brother...let's celebrate!!!" Then proceeded to give him a high-five!
hahaha He smile and chuckled a bit and then entertained my need for a
celebratory high-five! Uhm, hello...we celebrate E.V.E.R.Y.T.H.I.N.G...as we
think everyone should!!!!
This visit they dilated her eyes and apparently Jocelyn didn’t like that
very much. Before our appointment she ate lunch while the eye drops were
working and by the middle of the exam she decided a vomiting session was in
order. I’ve gotten pretty good at reading her cues and in no time flat I had
her out of my lap and vomiting in the sink next to us. Dr. O says “whoa, you
are amazing! I’ve never seen anyone move so fast!” I had to laugh and thought
to myself “wish I didn’t have to be.” :s I was pleased that both Dr. O and I were
able to walk away clean, only a minor abrasion and insta-bruise to my thigh,
and the office carpet only received minimal damage. I could live with that!
Sometimes traveling to and from appointments gets extremely tedious, but now
that J's eyes and shunt are remaining stable, we don’t have to see him or the neurosurgeon for
another year. That is of course unless something changes, but we are not going
to entertain those types of thoughts … at least not for today!
This past weekend we had plans to go to a thing called "Smoke on the Water" out at Lake Shawnee with some friends (it was a BBQ competition with yummy food, live music & various vendors), and we were also going to visit a local pumpkin patch.
Neither outing happened!
Thanks to the ever so wonderful Kansas weather, it was not only freezing Saturday, but it poured buckets of rain on and off all day. Not sure if the BBQ competition continued throughout the day, but we didn't venture to find out!
Sunday was a pretty day out and we could've done something outdoorsy, but again, we didn't.
So what did we do? We spent a pretty wonderful weekend playing inside, sleeping, cuddling, watched some good shows & not so good ones, got to see Felix Baumgartner float 24 miles into space only to sky dive and break the sound barrier (amongst break other world records), and we did lots and lots of cooking and eating!!!
I don't know what the deal is lately, but I have been in the mood to cook and bake like there is no tomorrow. What is wrong with me? First of all, I don't bake ... I'm really just not that good at it for some reason. Cooking and baking are two totally different art forms, and I'm definitely not a baker.
EXCEPT -- I have been these last few days!! I've been rockin' all things sweet and savory!
I've been making cinnamon/peach muffins, apple crisps, fluffy buttery biscuits, chocolaty walnut brownie pie, zesty lasagna, apple pie, pigs in a blanket, vegetable beef soup (and so much more) -- and all from scratch!!!
Again, what is wrong with me?
It definitely feels like we've eaten our weight in food this weekend, and I for one, totally don't feel bad about it! hahaha
Justin even got a wild hair up his butt and decided to make some homemade applesauce yesterday! Since we still have so many apples left over from our 1/2 bushel, he got busy in the kitchen too.
{The mighty-fine Cook himself workin' hard at it!}
{The Cook deserved a kiss!}
{My sweetness!}
{From start to finish! Our Vitamix blender is so awesome! This seriously turned out to be THE BEST applesauce I've ever had! No sugar added ... nothing added ... and its delicious!}
Once in a while its nice to just have a weekend to do nothing ... nothing but be together that is!
Well, and maaaaaybe to spend the entire weekend wearing elastic-waisted pants? :)
While spending the last day of the week watching Jocelyn in preschool, I glanced down at my hands. Lately my hands have felt tight, worn and dry. When I got to looking at them I thought to myself "wow, my hands look gross and super old!!"
The skin on my hands look scaly, scarred, calloused, torn and rough, fingernails various lengths and chipped, cuticles extremely unkempt and a fair amount of wrinkles. Plesant huh?
Wrinkles on my hands? At only 30? What the heck!! Are liverspots around the corner too?
How did my hands become so ugly?
As soon as that thought entered my head, the remaining thoughts followed...
I'm thankful that I even have hands!
Without my hands, I wouldn't be able to blow kisses --
Without my hands, I wouldn't be able to feel the scaliness of a snake or the uniqueness of a Kolas fur --
Without my hands, I would never be able to steer a bike --
Without my hands, I wouldn't be able to interlace fingers with my husband, wrestle and cling to him --
Without my hands, I wouldn't have been able to grab and hold Jocelyn for the very first time --
Without my hands, I wouldn't have been able to touch her precious, teeny-tiny angelic feet --
I'm thankful that my hands...
...function normally -- I can grasp, pinch, release, swipe and wiggle
...that they work both consciously and unconsciously -- and work well they do
...that I can shake hands with someone
...that I can carry in groceries from the car
...that they can feel warmth and coolness
...that they can distinguish between our daughters silky curls and delicate skin
...that they allow me to be independent
...that they are unique and special -- no one has the same pair
...that I can cook for my family, clean house and create things
...that I can write and type which gives me freedom of expression
...that I'm able use and teach sign language
...that I'm able to nurture, touch and soothe
...that I can feed myself
...that I'm able to scratch something itchy (haha that just sounds funny but true!)
This got me to thinking though, here I am whining in my head about my dried out, not so elegant fingers and nails, when in reality, because I have hands (whether they are "pretty" or not) my life is easier ... better.
Sometimes changing a negative thought into a positive one, can change your whole outlook on things.
Who cares if my hands look "older" or more "worn" than I think they should. In reality, now that I think about it, I would love at the end of my life, that my hands would tell a story all their own. A story of a mother, wife and friend -- one who labored and loved, one who wasn't afraid to get down and dirty, who knew what hard work was, that had both a stern and gentle touch ... yea, that's what I would want!
Hands aren't intended to be flawless -- they are for doing and living -- so my final thought as I looked at my hands?
I KNOW I am loved, and I realized not everyone FEELS that even in a lifetime. I have been blessed with the most amazing people in my life -- both in family and friends! People do so much for us ... for me ... and I can only hope that I am giving back a sliver of what I am receiving. If it wasn't for the important people in my life...
..........which includes those near and far, those I physically see and those I don't, those I talk or text too, those I've only met through Internet connections, those that maybe we have gone years without talking yet are at the very core of my heart always..........
...then I absolutely would not know what to do in this life, and often times wonder if I'd be able "to make it" without you guys.
It has been a long day of traveling today -- lots and LOTS of car time -- as Jocelyn had appointments in Kansas City, then back to Tecumseh, then to Baldwin and we are just now getting back to Tecumseh here at 6:30pm.
Very tiring day all around for the both of us.
So, I get home and this beautiful white box is sitting on my porch. I open the box from the fabulous Mrs. "O" and its filled with marvelous handmade cocoas, Chai tea and my all time favorite sweet Chex mix that's loaded with my secret addiction of M&M's. As if that massive amount of deliciousness wasn't enough, I found a tiny brown box with a dainty yellow ribbon tied around it.
I go to open the box and tears instantly flood my eyes...
Look at this beautiful necklace!!
{What a powerful gift! I instantly fell in love with this necklace! To have my princess' name, her birthdate, a reminder to "be strong" when so often it seems impossible and a green charm as my favorite color and its even the Cerebral Palsy awareness color! }
{It's absolutely BEAUTIFUL -- I love it so much!!}
Mickayla my sweet darling -- You have both made me simultaneously smile bigger than any smile yet shed tears! How lucky I am to call you my friend ... my sister! Thank you for being in my life and loving me and my family SO MUCH!!! We are so honored to know you -- how lovely you are indeed!
Jocie's been doing lots of fun crafty things thanks to our Fall Bucket List and I just had to share!
Two of our more recent creative times included making a Finger Print Indian Corn Craft and apple stamping.
Here are some cute shots of her doing what she does best ... being super cute!
{Jocie waited so patiently while mama prepped her corn cob & husk}
{Doing her thing!}
{I love seeing all her little fingerprints :)}
Since yesterday was a holiday for daddy, we went and got ourselves a heaping 1/2 bushel of mixed apples to make some yummy homemade goodies: applesauce, apple butter, apple cider ... we already made a pie ... and of course we used some of the apples to make stamps to play with.
{We ended up with about 20lbs of apples. Jocie even tried a little bit of one!!!}
While Daddy and Jocelyn played, I took a few minutes to cut a few apples and carve the letters "I" and "U" into them, and even managed to make a decent heart shaped one. Once I got everything prepped and ready for Jocelyn, we were ready for a stamping party.
{Mama helped to paint them & Jocie was getting into pounding them on the paper}
{Her face would alternate between "hmmmm" and "whoa...how'd we do that?"}
{Her nearly finished product}
Sometimes our activities are a hit or miss kind of thing, but thankfully these two crafts turned out to be great learning experiences!
