To My Loves...

I want to:

- wake up and see your beautiful smile every morning,

- for you to always know you are why my heart beats,

- never stop cuddling,

- give you kisses whenever and wherever I want,

- hold your hand always,

- hear your laughter every.single.day,

- always enjoy the little things with you (because that is what truly matters),

- think about you all the time,

- tell you how much I love you and for you to both know & feel that love,

- never take you for granted,

- be your inspiration because you are mine,

- always uplift and applaud you,

- be a better wife & mother than I was yesterday,

- tell you that you're the best thing to ever happen to me,

- always miss you when we are not near,

- be the one you tell all your secrets too,

- always make you feel important, treasured and loved,

- always have fun and dance together every day,

- to tell and show you each day that it's YOU that makes me a better person.

And specifically to you sweet husband ...

I want to:

- always be your queen as you are my king,

- feel like the most beautiful woman in your eyes,

- know that I make you the happiest man ... husband ... in the world,

- feel like we can never get enough of one another,

- fall more deeply in love with each passing day,

- spend more time wrapped up in your arms,

- always be your silly, creative, loving wife for as long as we both live!

***Mostly, above all else, I simply want YOU! I'm thankful you are in my life and I love you more than I could ever begin to say! I don't always do a great job of showing you my love, but you truly are a spectacular man and deserve the best the world has to offer!

"Thoughts of a Mom"

This morning as I was scrolling through my Facebook feed, I came across this "letter" (or thoughts really) from a mother of a special needs child. As I read through this I said "my thoughts EXACTLY!" I didn't think this letter would make me cry, but inevitably, I started crying half way through.

It is true, we special needs mamas are a breed all of our own, but not by choice. We love our special angels and would never want to be without them, but we wish (at least I do anyways) that life was different, more typical, more "normal" ... easier.

Mothers of all walks of life, whether they have a special needs child or not, have their lives flipped upside the minute they find out their pregnant, give birth or adopt a baby. Everything changes for everyone! However, when you find out that you all of a sudden fall under the category of a "special needs parent" something happens ... it changes you and your life in a totally different way and its forever. There are a whole new set of challenges to face, new lingo to learn ... simply a different way of life all together.

Please do not understand -- we "special needs parents" are no better than parents to a typical developing child, we are simply unique in the things we face when it comes to our child (children), in how we provide care and simply ... how we live all together.

Below are the thoughts of Maureen Higgins who has written what many "special needs parents" think and feel.

Thoughts of a Mom
By Maureen K. Higgins

"Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."

Visit to the Brain Docs

The majority of the last few days have kind of blurred together.

This past Wednesday, we spent most of the day bouncing between two different Children's Mercy hospitals to see the neurosurgeon, neurologist and to obtain the necessary radiology images.

After seeing our neurosurgeon, we found out that basically they were taking their "best guess" as to whether Jocelyn's shunt had malfunction. Supposedly, the CT scan that we got on November 9th when Jocie had her seizures was virtually unchanged in comparison to the one she had two years ago. Not only that, but when they tapped Jocie's shunt and found it to be 18psi (15psi is normal), that it really wasn't "that bad."

We knew prior to surgery that the CT scan were virtually unchanged and that the pressure inside her skull was 18psi, but we also thought everyone was 100% sure she was having a shunt malfunction; hence, why we did the surgery.

Turns out, even if a CT looks unchanged or "good," and when a shunt is tapped and doesn't reveal much, you can still have a shunt failure and not really know it. They said since she had been vomiting and began having seizures, that they decided to "try changing the shunt and see if that helped." I don't know about anyone else, but for some reason, them telling us that they were basically guessing made me really uncomfortable. They might have really thought and done this, but don't tell me!!!

Don't get me wrong, apparently Jocelyn needed a new shunt and we are unimaginably grateful that this type of procedure exists and that we can get fabulous care from CMH. I simply would hope there would be more evidence these days to give a definite "yes, this is the problem" or "no." But who knows, maybe there isn't?

I'm telling you right now, I know for a fact that I would have totally flipped-out if it wasn't the shunt and we went through all that ... if Jocelyn went through all that ... for nothing!!

When we hopped over to a different CMH to see the neurologist, we found out the following:

1. Seizures are "no big deal."
2. When having a seizure, its not necessary to call 911, unless its a shunt malfunction.
3. We should've used our "rescue medication."
4. Seizures do not cause any permanent damage even if the oxygen level falls to 50%.
5. That sleeping issues are a MAJOR problem with people with brain injuries and especially when that injury is from hypoxia! It is suspected that Jocelyn's pineal gland has been damaged and therefore she's unable to regulate her sleep cycles.

I think somewhere along the line with having this conversation with our neurologist, my husband picked my jaw up off the ground. First, when its your child, a seizure is beyond a "big deal!!!" Secondly, I'm pretty sure I don't have a CT or MRI machine in my backyard to determine, PRIOR to calling 911, that Jocelyn's shunt has malfunction. Jocelyn hasn't ever had seizures {outside the NICU when there was still blood on her brain}, but my very first thought was "Oh no! Her shunt has probably malfunctioned!"

Well, that was after my first initial "Oh shit!" thought!

It was pretty obvious that the specialists didn't think Jocelyn truly had a 10 minute seizure followed by 2 five minute seizures. I know for a fact the first one was 10 minutes {I know the exact time of all three of them} because I looked at the time I called 911 and then again when the seizure stopped. I can tell time! But regardless, we were informed to make sure we use a watch {and "not guess"} so that we could truly time any future seizure activity as 1 minute can seem like an eternity. That was the first statement he said that I agreed with!

Also, both our neurosurgeon and neurologist kept saying "Did you give her the rescue medication?" Repeatedly we told them "No, we've never had to use the stuff and none was ever given to us in the first place." We again told them that once all the blood inside of Jocie's brain ventricles cleared, she didn't have seizures. She will always be more susceptible to have a seizure unlike a typically developing child, but it wasn't ever brought up to keep that stuff on hand and not to mention that it has been over 2 1/2 years since she's ever even had one.

Needless to say, we now have a medication called Diastat. This medication is given rectally if Jocie has a seizure that lasts for greater than 5 minutes. Trust me, if Boogie even remotely demonstrated seizure activity, it will be extremely hard for me to not give the Diastat immediately, but I will try my best!

We have been frustrated because we have seen a difference in Jocelyn since her having the seizures and the shunt replacement, and its annoying when people make you feel like you're crazy and especially since seizures "don't do any permanent damage!" Either way, we know our daughter and she's seems different. Jocie goes from bursting into tears to laughing at a drop of a hat {a lot of 2 year-old do, but not Jocelyn ... or at least not since before this}. She seems to have lost some of her ability to balance herself {which we constantly work hard ... extremely hard ... to make any type of gain}, she neglects her left side more and her personality all around seems different. However, now that we are more than 2 weeks out, some of these things have started to somewhat improve.

Both professionals suggested that some of these changes could be from the fact that they put in a larger VP Shunt ... so the catheter inside the brain is larger ... and that means that part of the brain tissue in the frontal lobe is gone and there "might be" some residual swelling of the brain around the catheter.

Awesome!

{My sarcasm is beyond thick as would be yours, but there's nothing that can be done about it}

I'm not trying to sound like a jerk or ungrateful, because I am grateful for their education, intelligence and skillful hands; however, I am also a mother who loves our daughter beyond measure and find all of this so challenging and aggravating!!

I literally thought I was going to explode after all our appointments were said and done.

 

It doesn't help when the nurses had trouble doing basic things {like subtraction to get Jocie's correct weight ... it took the lady nearly 5 minutes ... no joke ... to subtract 100kg from 14.2kg and then convert that into pounds}, or when we have to tell them how to position Jocie for a CT or shunt series x-ray ... it was just all piling up throughout the day!

 

We typically get awesome care at CMH and I would still choose them a 100 times over, but I was so frustrated on Wednesday!

 

Through it all we learned ...

 

... Sometimes surgery is necessary even when there is uncertainty.
... We now have a med on hand for any (potential) future seizures which provides (some) peace of mind.

... We now know what to expect if Jocelyn has any additional seizures or another shunt failure.

... That we are NOT imagining Jocelyn's sleeplessness, and have received validation that she truly has a problem. Solution? We are starting to give her 2.5mg of melatonin each night and prayerfully hoping this changes our lives.

 

On a side note, I plan to print and mail literature to our primary physician that blew us off when requesting help about Jocelyn's sleeping issues. I'm not doing it to be an ass, but who knows, someone else might be in the same situation and only have the primary doctor as a resource so he needs to know what to do! And besides, knowledge is power!

 

After our busy day, we spent the next 3 days seeing lots of family and gorging ourselves on some wonderful Thanksgiving food! We had lots of celebration to do because after all ... we have so much to be thankful for!!

Sleepless in Tecumseh

So maybe Jocelyn doesn't sleep because her bed is AWFUL!!! Oh my goodness gracious! I highly doubt this is the reason, but hot dang, my back and neck still hurt even this afternoon!

Justin crawled into bed with Boogie yesterday morning (and when I say "morning" I'm talking about her getting up at 3am is her typical time) so I could try and get an extra hour or two of sleep. Last night when she woke me up by hollering and pounding her feet on the floor at 4am, I figured it was my turned, and I crawled into bed with her so Justin could sleep a bit more.

Note: us crawling into her twin-sized bed is not ... I repeat NOT ... a normal thing for us, but at this point, we are getting desperate and will do anything for some sleep! :s

So from 4-5:30am Jocelyn whined and pushed against me because she wanted to roll around and off the bed onto the floor because "down there" she can be the loudest. I can not believe how hard she could push on me! Really kid? Trust me, I don't want to sleep next to you either! She finally got worn down and fell back asleep around 5:30-6am (which is when we should be getting up!).

Justin and I have tried nearly everything over the last two years to get Jocelyn to sleep through the night. We've went from changing the time we put her to bed, changing her beds, shorter naps, changing her meals times, warm baths, story time and cuddles prior to being put in bed, we use a noise maker, keep her room cool, keep stimulation before bed to a minimum and those are only the tip of the iceberg!

Oh, and don't think we cater to Jocelyn whenever she makes any type of ruckus because we don't. We've done the whole "let her cry it out ignoring her thing" and that hasn't worked for years now!

We will attempt a new tactic for a few weeks and when it doesn't work, we try something different. Up to this point I feel like we've been optimistic, but I am totally fed up with not having a decent nights sleep. All I'm asking for is about 5 hours of uninterrupted sleep ... that's it! I don't think that's being unreasonable?! I've definitely "put my time in" and now ready to have some normalcy (whatever that is??).

I have no problem getting up early. In fact, I love getting up at 5am to work out and get my day started bright and early, but not when I don't sleep but 3 hours or so at a time.

The time has now come when Justin and I are both so thoroughly exhausted that we are considering that maybe she might require a medication to help her stay asleep. For the most part she goes to sleep fairly well ... mostly ... but the sleeping past 4 hours virtually never happens.

So yesterday, I decided to call Jocelyn's primary physician and informed them that we have to do something. All three of us need sleep and if Jocelyn can't do anything most of the day because she's too tired, then how are we ever going to make gains in all the areas that she needs? I am starting to think its because of her brain injury?

Apparently my attempts were futile as the doctor's reply was "well it looks like she has you wrapped around her finger ... I have no recommendations but to keep trying."

WHAT?!?!

I don't think he is understanding the gravity of the situation here!

 

In the beginning I could do no sleep, and when you have a baby, you should expect that. But now that we are almost going on Jocelyn being 3 years-old, somethings gotta give!

 

Right now we still have connections with the special care unit at Children's Mercy and perhaps they will have some suggestions on what we can give Jocelyn in regards to medication. I know several people try melatonin with their kids but with all of Boogies health issues and so forth, I don't want to just take a stab in the dark and go off trying whatever. Normally I would, but if I made things worse or God forbid if something else happened in our already chaotic world, I would feel terrible.

So here the hubby and I remain ... sleepless in Tecumseh ... and growing more and more tired as the day/nights pass. I will keep hoping that we will find something, whether its a medication or some miraculous non-pharmacological approach that will help us all to get the much needed sleep we need.

Until then, we will continue to sneak-in naps whenever possible.

Perhaps this is just the passage of parenthood and everyone goes this long without sleep? If this is the case, then all you parents that have kids that are grown and gone ... God Bless You!!

For the rest of us that are in the midst of downing ungodly amounts of caffeine, covering our blackened raccoon eyes, have extra weight on our bones and constantly fighting our uncontrollable urge to take our irritability out on whoever is in our presence ... just know this mama is right there with you!!!  We all will survive ... right??!!??

Hair Party

Since I had already got my workout done early this morning and daddy was home during nap-time, I took advantage of having a little bit of "me" time to actually do my hair and makeup for once. Seems like I never "primp" anymore so it was nice.

I snapped a quick pic with my camera phone.

I can't believe how long my hair has gotten because it takes SO LONG for it grow!

Apparently Boogie was loving my straightened long hair, so tonight was a "let's play with mamas hair" night! Boogie hasn't ever played with my hair like she did tonight and she found it both funny, weird and maybe a little awkward. She would giggle, scrunch her face almost like she was disgusted and then all of sudden was intrigued when she reached the end and it fell from her hands.

I must've laid in-between her legs and let her comb her fingers through my hair for half an hour. I loved watching her facial expressions and getting to gaze into her beautiful brown eyes. Its moments like tonight that I wish I could freeze in time and store away somewhere deep in my brain so I'll never forget and a disease like Alzheimer's will never rob from me!!

I couldn't believe she was combing ... with her fingers ... through my hair!!!

COMBING PEOPLE! That takes dexterity! 

I didn't even know she could do that with her fingers because coordination is difficult for her and often times her fingers can be sort of stiff. What's even better? She was doing it with her left hand! Whoa-wowzers!!! :)

She's so cute!

I think she's really starting to look like a little girl.

*sniff* *sniff* -- She's definitely no longer a baby!

Daddy decided after mommy's hair was thoroughly tangled and Boogie's slobbery fingers and hands had been wiped all over my face a hundred times, that a family picture was a good idea.

Still turned out cute and something to treasure!

Christmas in November

For more mornings than I can count, Jocelyn seems to think that getting up at 3am is the most appropriate time for starting her day, and here is one of her favorite early morning activities...

{"Hmmm, I've got two somethings to brush my hair - that's important.
Can't forget the smell good spray for my curls and oh ...
DON'T FORGET THE LOTION MOM!" She's so funny!}

So even though I'm constantly in a zombie, sleep-deprived state ... I just can't seem to be too terribly upset at this face!

Why do I feel like it's Christmas in November? Because our insurance (with a little additional encouragement from our primary physician and yours truly) approved some much needed equipment to help Boogie gain strength, endurance and hopefully independence.

 

I mentioned earlier in one of my blogs that we got some awesome equipment this last Tuesday, but wanted to snap some quick shots of Jocie in it.

 

What we ended up getting was a KidWalker (this is a gait trainer) and a Bantam Sit-to-Stand which both are crazy amazing!! We had to wait 1 1/2 months to get our "presents," but in the world of special needs equipment? That's pretty dang good so no complaints here!

 

We have been trying out a bigger sized KidWalker which we will be returning of course, and its so nice to have one in Jocelyn's size with all the bells and whistles. She really needs that extra support at her chest, abdomen and pelvis.

 

Here she is in her new walker.

When looking at the KidWalker from the side, it looks much more complicated than a traditional gait trainer, but this thing is probably the easiest maneuverable gait trainer we've seen and tried out.

 

Here's what the gait trainer looks like from the side.

{I love that the little clear wheels in the back light-up with all different colors when rolling}

In order for Jocelyn to learn to tolerate bearing her own weight, and to strengthen her bones (because we all need to bear-weight for good bone density), we needed a stander. The one we had been using prior to our new one, was a wooden TherAdapter vertical stander. It was perfect when Boogie was small because its hard to find a stander that comes in itty-bitty size!

Now that Jocie is taller and heavier, this Bantam Sit-to-Stand is perfect!! It does exactly what the name says, you sit your child into the device, secure them and then use the lever to raise them into a standing, vertical position. When you are ready to get out, you pull back on the lever and the hydraulics slowly lower the child back into sitting! Pretty nifty huh?

I love this concept because it makes a person go through the entire motion of getting from a sitting to standing positioning which is needed for brain mapping/learning. We also opted to get the swing away tray and knee pads to make things easier with getting Jocelyn in and out of the stander.

Here's a side view of Boogie sitting and then partially raised.

And here she is raised all the way up without the tray.

One of the things I love most is that this stander is user friendly so anyone can use it. And as you can see, we had to build up the foot plates because she wasn't tall enough. No matter, she will have plenty of time to grow into it which means more usage time for us! :)

Today we painted, sang songs and read in our stander -- she seemed to enjoy it!! Woohoo!!

These two pieces equipment were extremely expensive and I don't take having insurance for granted. I hate that Justin works all the time, is gone a lot and often worry about him when he's flying; but, without his job, we wouldn't be able to achieve our goals and be granted such incredible "Christmas" gifts!

Friends Change Everything

Its been no surprised that I have been tired today ... no surprise at all.

What was a surprise today though, was a visit from some fabulous (and I mean FABULOUS) gals!

This afternoon Jocie and I went for a trike ride out at the lake because we were in serious need of some rejuvenating sun rays! Along the way I came inches from almost hitting a deer and it was only like 11am! I guess deer don't realize that 11am is totally not an appropriate time for launching themselves in front of me. Then again, there is never a "good" time to almost hit a deer! I totally had to choke my heart back down into my chest. I've fallen in love with our van and I now don't know what I would ever do without it! My friend Brian said according to the deer "a near car experience is nature's best laxative!" Ha! He's always making me laugh with his quick wit.

So anyways, once we got home, we started doing some of our preschool stuff which neither of us wanted to do. I'm ready for some energy to be zapped into our body's. About half-way through our stuff I hear a knock on the front door. I immediately thought "Oh no! My door is open and someones totally going to know I'm home ... I have to answer it now ... Gawd! No one comes to my house unexpectedly ... I live in the country ... this will be just grand!!"

Aren't I just the positive one today? Shame on me for being such a turd! I was letting my crankiness get the best of me and I don't like it when I get this way ... not one bit!!

To my lovely surprise, it was my girlfriend Sarah!! Seeing her smiling face standing there at my door with a warm Chai drink in one hand and a 6-pack of superbly decorated mini Billy Vanilly cupcakes in the other hand, was the most beautiful sight I've seen in days!!!

Even though she is one of the busiest women I know, she took time out today (probably missing her own lunch) to swing by and see us. I probably kept her entirely too long, but it was so nice getting to chat for a little bit face-to-face with a girlfriend. Visiting with her this afternoon made me realize a few things that I hadn't really took the time to think through yet. Funny how sometimes your brain, or heart, throws-up when you least expect. Needless to say, I think she was suppose to come over today and I'm so glad she did.

After a later lunch, I snuggled Jocelyn a bit to get her good and sleepy, then laid her down for a much needed nap. I also laid down but wasn't quite as successful. I did end up getting about 45 minutes of rest in, so that was something. Before I fell asleep I was praying to the "Gods of Crankiness" that we would both wake up in better moods!

And we did!

Not only did I feel a little better, but more of my girlfriends came by to bring us supper, dessert and even breakfast for tomorrow! I felt guilty because they had to drive like 20 minutes both ways just to bring it to us, but I know they love us.

The icing on the cake was getting to see our boys and mini princess -- I love their sweet kids. I know everyone has pretty awesome kids, but my girlfriends' kids always have so much love and giggles for us and they are such a treat to be around. They kept them in the car because they said they didn't want me to have to "entertain" them, so I just went outside and riled them up anyways! haha Chasing Ty around the yard was good fun for this lady.

I just recently found out that Grady's been praying for Jocelyn most nights and if that isn't heart-melting, then I don't know what is!! Ashley and Cherry, you girls are always so supportive and loving -- what did I ever do without you?? I love you both so dearly! Like I said a little bit ago, there is just something about great comfort in someone else's food ... I've always heard its because its made with love. You really made a difference in our night and seeing you two, and the kids, was uplifting in itself.

I've realized a few things today from my two visits:

1) I have AMAZING friends!

2) I'm truly fearful that we're going to loose Jocelyn ... I've felt this way for some time now ... and with the latest events, its all came to a head.

3) That a "cake intervention" really can cure a lot! :)

4) That sometimes I'm too hard on myself as a mother, and that I'm doing a pretty good job even on my worse day.

5) That simply seeing a bright beautiful smile on the face of a friend can make your whole day turn around.

6) That its okay to always want more for Jocelyn and for her to achieve as much as possible because that is what parents want. What I want most, is for Jocelyn to be HAPPY, and I think right now she truly is minus feeling a little achy and sick. I have never bothered to look up what a child with Jocelyn's diagnoses typically achieves (guess I've never wanted to know because I didn't want to plant the seed in my brain that "this is just the way things are" and give myself permission to not expect greatness), but I recently had a therapist inform me that the majority of people with Jocelyn's diagnoses rarely show any interest in anything, can't hold their head up, can't sit up on their own, manipulate anything, they do not roll and so forth. Hearing this from a trusted friend made me immeasurably grateful that Boogie can do those things, and yet, its still okay for me to want more for her.

7) And lastly, that a meal cooked for you oddly enough has healing magical powers!

I love you girls - so much! Thank you for making this Friday, much better than the last. You have the most giving hearts and I adore you all the more for that.

Just Like in the "Green Mile"

Do you remember that movie?

The Green Mile

... from 1999? (Yes, its been that long ago!)

The one with Tom Hanks and the late Michael Duncan? Who doesn't know that movie? On a side note, I'm still really sad that Michael Duncan passed away back in September of this year. I absolutely loved him in The Green Mile, Armageddon, The Whole Nine Yards and the infamous Talladega Nights!

When flipping through the channels just now, I came across The Green Mile on AMC, and the movie was just at the point where John Coffey went to visit Melinda Moores to heal her of the degenerating brain tumor that was soon to be the cause of her demise.

(I told you I loved his movies)

But as I was watching this scene, something totally unexpected came over me. I started to instantly cry as I thought of Jocelyn and all the brain damage she has sustained in her short few years. I actually was thinking "Why can't something like this be real ... be true ... and happen for us?" I might have simultaneously been having a nervous breakdown? (This is however also the most appropriate time of the month for me to be extremely hormonal :|)

I would do anything ... ANYTHING ... for my own "John Coffey" to come along and heal my precious babygirl. If there was such a person that could suck that permanent brain damage from her small, little body and then cough it out into the never ending abyss ... I would pay any price! My own life in fact!

If I had that kind of magical power I would've made sure it was done the second we knew about her brain bleeds.

Cerebral palsy is not a condition that can be "healed" ... only the after-effects can be treated. I use the word "treated" loosely at times because it often feels like your chasing your own tail or seeing how "good" you are at preventing or "catching things" before they get worse.

We all want our miracle don't we?

Tonight, more than anything I have ever desired with my whole being, I wish my sweet daughter could be "healed."

Covering Wounds with Blessings

Boogie was mostly wiped yesterday. She spent the majority of the day sleeping and being the sweetest cuddle-bug which daddy thoroughly enjoyed. Out of the two of us, he doesn't get enough cuddle-time.

We found ourselves enjoying every part of her -- right down to her kissable little lips and warm chubby fingers (she even has dimples on her knuckles).

Now that we've had a day or two to decompress, the blessings that have been placed in front of us are more than we ever saw coming!

Not only do we have our smiling, happy little girl back (she's slowly getting there, but this is a fantastic start!) ...

... but we have been flooded ... FLOODED ... with emails, texts, Facebook messages and phone calls from our family and friends that are filled with so much love, sincere prayers and words of encouragement and wisdom.

... its overwhelming!!!

I even had a friend (newly adopted "mom") that I met online through blogging, and she wrote so genuinely about Jocelyn and our family which can been seen HERE. Of course that made me cry as it was totally unexpected. You just don't realize how you can impact a total stranger (which she is no longer a stranger of course). But life is all about people and relationships ... that is what makes a person RICH ... and you guessed it, all of you have made me feel like we are the richest family in the world!

While we were still at Children's Mercy, I called Massage Envy and scheduled a massage for Monday for the hubby and I (separately of course so one of us would still be with Jocie). So yesterday we indulged in our much needed massages (we are actually sore today from them though), but they really did help relieve some of the stress and were worth the money (dang they are expensive :s)!

Also, our friends Brian and Dani came over last night bearing a yummy dinner, smiles, friendship, love and the most creative gift. My friend Dani has a gift for craftiness and she made me/us "The God Box." Hope they don't mind me sharing this, but I thought it was pretty thoughtful and it will be put to use effect immediately!! So what is this you ask? Well see below! :)

As if these things aren't enough, we traveled to Salina today to pick up what I thought was only going to be Jocelyn's new DAFO's (her last ones didn't work out too well so I've been anticipating the new ones). Once we arrived there, we found out that not only did her DAFO's arrive, but so did her KidWalk walker and her Bantam Sit-to-Stand!!! Can we say MERRY CHRISTMAS!!! I will have to take pictures of her in the new equipment and hopefully they will help make her stronger.

I so badly wanted to stop and see our friends Ashley, the girls at KDOA, our old neighbors and many others; but we sadly didn't have the time or energy. We ended up spending nearly four hours with our therapist fitting Boogies boots, putting together the equipment and adjusting it to fit her body. After all that, we were ready to come home!

Then, when Jocelyn and I pull up to the house, there was a Dillions delivery van sitting in our driveway. I pulled up, got out of our van and start talking to the delivery man. He was the nicest old man ... you know, that sweet-type of grandpa looking man? When I got out of the van I asked him, "Have you been waiting here long?" He replied, "Oh, for about 30 minutes or so, but I kept thinking somebody really needed these today." Talk about making you cry, and especially when you find out he had been sitting in the driveway for so long!!! He ended up delivering the most beautiful flowers and teddybear for Miss Jocelyn from our friends Dan and Kristi. It's no surprise that I cried, I'm such a ball-baby these days and especially lately, but I guess it just doesn't take much right now I suppose. Boogie immediately loved the teddybear and decided it needed a slobbery ear, and the flowers smell amazing! Lillies are even my (and by adoption Jocelyn's) favorite flower! :)

Why am I sharing all this goodness ... these blessings?

Not because I want to brag -- trust me -- I'm just not that kind of person. I figure there are far, far too many negative things in this world, and we seem to run into so many ugly-hearted people, that I wanted to take a minute to share how all of you have helped cover our most recent wounds with the best type of "band-aid" there is -- LOVE!

I can tell that we are already starting to heal, and amazingly fast I might add, but I think that is because all of you have swooped in like our knight-and-shining-armor to ward off the decent of depression, despair and fear. I know we still have fear and that not ever go away completely, and we will never be able to forget what we've experienced, but it will not define our family. We have God and you to thank for holding our hand along this journey!

Aren't Things Suppose to be BETTER?

I am having a really hard time being home right now!

Half way on the drive home yesterday from Children's Mercy (in the pouring-I-can't-see-a-thing-rain), it dawned on me that I was about to be right back in the place where Jocelyn had her first of the three seizures ... our living room floor ... were we spend the majority of our time.

As we passed two nasty wrecks along the way with Justin talking about I don't know what, because I couldn't seem to focus, and as Jocelyn was giggling on and off while watching Sesame Street in the back of the van ... I seemed kind of lost in my own thoughts. As I gazed out the window I could feel the anxiety creeping in and my heart progressively started to pound harder and harder. I told myself "It's not going to be a big deal ... don't worry about it" and then the thoughts of "Watch yourself just totally flip out when you get home!" came right afterwards. Sometimes your brain can make you feel like you might be going borderline crazy.

Maybe a little PTSD? Who knows ...

Last night was suppose to be an early night to bed and a morning of sleeping-in but neither happened. I had a hard time falling asleep and then staying asleep because I kept thinking about Jocelyn sleeping alone in her room and there being a chance she could have a seizure and I wouldn't know about it. When she had all three of her seizures, she didn't make not even one little noise, nothing, zilch ... silence! What if she was having one in the middle of night and stopped breathing again and it went on forever? I know it wouldn't go on "forever" but that is what your mind tells you.

As I would lay in bed, or the million times I went into her room last night, I would remind myself that she had the seizures because of the shunt failure. No one really knows that for sure though, and now that she's had them again, she will be even more susceptible. Maybe I'll have a little bit more piece of mind once we get an EEG?

Probably not.

Perhaps I'm having a harder time with this unexpected surprise of events because in the past I am the one that caught her shunt failures before they were "really bad" and even though the last two failures were a surprise, I wasn't totally caught off guard. Not to mention the last shunt failures happened more than two years ago so I'm sure I've started to let my guard down, but who can always live with such hypervigilance?

And not only that, but having your child be on their 4th VP shunt in only 2 1/2 years makes you wonder how many more times she, and we, can go through this? If we keep these types of statistics up, she'll have had 16 shunts by the time she's 10!!!

Maybe it's the fact that the other shunt failures, although terrible and stressful in their own right, weren't as traumatic for me as this one was. With the other failures, I didn't have to watch our daughter's tiny body convulse uncontrollably! I'm even finding myself feeling anxious everytime I feed her since it started during her feeding followed by vomiting.

I know I'm a strong person and "this too shall pass."

Have I ever told you how much I HATE CLICHE SAYINGS! Especially ones like "Everything happens for a reason" or "If God brought you to it, He will see you through it" or "What doesn't kill you makes you stronger." Spare me all those annoying cliches that people think will make you feel better but in fact only infuriate you. I know that sometimes people say things like this because it's hard to know what to say in situations like these ... just venting.

But I do know that all of this really will "pass," and that it is normal to feel "on edge" or scared that this nightmare will happen again. It may very well happen again ... these are the cards we've been dealt ... but in this moment, things don't feel any easier. I think that now that I've experienced this horrid world of seizures, I will be more prepared for when and if it happens again.

My heart is hurting which again is unexpected because I've got my smiling, happy girl right next to me. I guess fear is paralyzing me today with thoughts of "you could lose her at anytime" which is trying to rob me of my joy. The Devil can be stronger than we think, but I refuse to let him destroy me ... or us!

He.Will.Not.Win!

An Update

... from yours truly on 2 Henson! I'm getting to use their computer!! Woohoo!

Yesterday was a fairly good day for little Miss Princess, even though her first night after the surgery was tough with little to no sleep for all three of us. Jocelyn continues to heal and recover well it seems, and for that, I'm beyond grateful. We figure she's thrilled to no longer have a throbbing headache as I'm sure all that extra pressure would make someone feel like their head was going to explode. Poor sweet girl!

And guess what?

NO MORE SEIZURES!

Throughout the day yesterday we took naps, played with toys and on the iPad, read lots of books, went for walks on our floor (well, walks and dancing which is Boogies favorite and lets face it ... I'm going to give her what she wants no matter if I look like an idiot or not!).

As night approached, Jocelyn started to get sick and vomited twice which made me a little bit worried that something else might be wrong, but then again, sometimes she vomits for no reason and its really frustrating. We kind of thought that it might be from what she had for supper as she received refried beans and that might have been too filling for her right now, either that, or her ramming her fingers in her mouth and down her throat never helps! Either way, she vomited her supper and then her medicine later. After that fun excitement, she was fighting any type of sleep until almost 11pm. Once we got her down for the night, she slept all night long until we woke her at 8am (this is HUGE for us because that never happens!).

So far, this morning has been going fabulous and guess what else?

WE GET TO GO HOME TODAY!!!

 

We just finished giving Jocelyn her breakfast, waiting on some last minute paperwork and then we should be on our way home!!! Yippee!!!

 

We will be having more appointments in the future (as expected) to get her stitches removed and to start seeing her neurologist again for an EEG, etc. Hopefully they will say that the seizures were simply because of the increased intracrainal pressure from the shunt failing and that we will not have to be put on medication. Trust me when I say I would give her whatever meds I had to in order for her, and me, not to have to suffer through any more seizures, but I would prefer her to not need them at all.

 

One thing is for sure -- I am totally loving seeing our little girl smile and play -- its got to be the best sight in the world right now!!!

 

Here's to heading home and bing healthy!

Unexpected Turn of Events

After about only 2 hours of sleep tonight, I'm sitting here downing typical hospital coffee with a million different thoughts scrambling through my brain.

This has been a day I wish to never go through again!!!

I'm sure its by the grace of God that I got our computer to connect to the Internet right now (seeing how I am sleepless) and able to check my Facebook and blog. I plan to tell you what happened today if I can see through the tears, but first, how did I ever ... EVER ... get so lucky to have each and every one of you in my life. When I opened my Facebook ... ugh ... the hot, stinging tears are just rolling down my face ...

(Let me recollect myself)

When I opened up Facebook, the amount of genuine love, support, encouragement, prayers, sympathy and empathy for my family and I is overwhelming!!! I literally don't know if I have the words (or thoughts) to express to you the difference you have made in my heart tonight ... this morning ... whatever time it is! I sincerely think I felt every well wish, thought and prayer each of you uplifted for my family today. Make no doubt ... I am GRATEFUL for each of you!!!!

Here is what happened today.

Yesterday, Jocelyn of course did her normal thing of waking up around 2:30-3am and wanted to stay awake with the mission of waking the dead, until nearly 5-6am (which of course was when it was time for mommy to get up). The last several sleepless nights (weeks if I'm honest) finally caught up to me and I felt zapped. I sort of slept until 7am, then reluctantly dragged myself out of bed to see Justin off to work and get things started for the day.

I decided to let Jocelyn sleep until around 8:15am and then woke her up to get started for the day. After all, we had physical therapy in town at 10am so we had to get moving.

Jocelyn and I did our normal routine of giving her 8oz of water in the morning while I simultaneously made her blended meal for the day. Once I had her water infused, it was time for a bath, brushed her body (its a sensory awareness therapy thing), lathered her squishy chunky self in lotion, dressed her, played with her bouncy wet curls, brushed her teeth and then it was time to eat breakfast.

After only giving Jocelyn maybe 4oz of food, I could tell that she was getting ready to vomit. I don't get too worked up because sometimes we have quite a few vomiting spells, then it stops for awhile, and then out of nowhere, it rears its ugly head again. Just when I think I have it all figured out to why she vomits, I suddenly find myself at a lost for why.

Since I could see Jocelyn was about to get sick, I grabbed a towel that I always have nearby, and she of course began heaving. Quickly I started to noticed how violently she was vomiting and couldn't seem to clear the vomit from her throat as easily, which alarmed me right way, but her body finally rejected the meal it obviously did not want.

I've gotten pretty good at this so nothing got on her shirt or chair, and the only thing that was soiled, was the towel. I wiped away whatever else I could see on her mouth and chin, and then the unexpected happened.

The next thing I knew, I found myself saying "Jocelyn, whats wrong baby?" as she instantly had this icy, glazed looked to her eyes that were fixed as stone. I moved to get right in her face and again I said "Baby are you okay?" Right away I started to see a change in Jocelyn's body that I have been fortunate enough to have never seen until now. She lifted both arms out to her side, clinched her fists and then started to turn her hands down and inward. Her whole body tightened in a way that you would expect a bodybuilders to do if they were about to lift weights heavier than they should, and that was when her eyes fluttered up and to the side as her whole upper body started to tremor.

I have never seen anyone have a seizure and I could have went my whole life without seeing one, and especially seeing my babygirl have one. I found myself dumbfounded and wondering what was I truly seeing right in front of me, but the next thing I knew, I had Boogie out of her chair and on the floor with everything away from her.

Jocelyn continued to seize and became unresponsive as I called 911 (through my tears), gave the details and then called Justin at work to tell him to get home NOW!

The seizure lasted for 10 minutes.

This was the single worse, most helpless experience, I have ever EVER had. I'm crying now as my brain so clearly replays all the graphic details. If there was ever a feeling of wanting to die -- it was in that moment.

Right as Jocelyn's seizure was starting to end, the first responder ambulance arrived at our house. I found myself updating them on what had happened thus far and yet was in a complete daze. Jocelyn hasn't had seizures since she was in the NICU and the only reason she had those, was because she suffered massive brain hemorrhaging and the all that free blood inside the brain aggravated the tissues which caused seizures. Once the blood cleared, she no longer had seizures and has remained that way until now. When you are a baby (and in her case a micropreemie), seizures are not outwardly expressed like it was today which made me all the more unprepared.

As I watched the first responders, I found myself feeling like I was going to hyperventilate (again, a new experience) and yet at the same time slit their throats since it was obvious they were not prepared to help a 2 year-old. They didn't have any pediatric supplies (so they couldn't even check her oxygen level was which is often really low during or after a seizure in most people) and my mind screamed "What the hell are you here for then!!!!!"

Next thing I knew, a different ambulance arrived and thankfully was what we needed. After the second group performed a quick assessment, they loaded Jocelyn into the back of the ambulance, I jumped in behind them and then we hauled ourselves off to Stormont-Vail in Topeka. It was about 9:40am at this time.

While we were in the ambulance, Jocelyn had a second seizure that last 5 minutes and caused her oxygen levels to briefly dip into the 50's-60's. At this point she was given Versed through her nose (Jocelyn did not yet have an IV site). Once she had the second seizure they decided to high-tail it to the hospital which was absolutely okay with me. On a side note, "high-tailing it" while in the back of an ambulance made this already motion-sickness prone mama even more on edge!

At about 9:55am, we arrive to the ER and again provided the same report of our morning to the staff, and everyone started replacing monitoring probes, attaching wires, hooking up all the machines, drawl blood and fish several times for an IV (let me tell you how unglued I was about to come). At this point Jocelyn was in a deep trance-like state and pretty unresponsive. Then it happened again ...

She had a third seizure -- all in under an hour!

More versed, a bigger dose this time, was again given down the nose as we still didn't have an IV site.

FINALLY -- the seizures stopped!

 

For the next 6 hours the only thing accomplished during our stay was a fast 30 second CT scan and thoroughly pissing this mama off!! I won't go into everything that happened while we were there (I don't have THAT much energy), but let's just say if critical thinking ... any thinking ... was taking place, the care we received would've been more thorough, effective, safe and all around better. Justin said he was glad he ran home to gather supplies and missed my raging outburst. I don't like to be that way, but get it together or get the hell out of my way!

I maintain a medical care notebook with all Jocelyn's information which includes a million different CDs of her past CT's and MRI's, and so I was able to provide those for the hospital for review (that's a point scored for this organized mamabear!). However, even with having past CT's for comparison, it was difficult for the radiologist to tell whether or not Jocelyn had a shunt failure.

For those of you that don't know, Jocelyn has a right VP shunt and you can read about her shunt, or watch a quick video of a shunt procedure, by clicking HERE which will redirect you to a different blog entry of mine.

As the hours ticked away, so did my patience while we waited and waited and WAITED at the hospital in Topeka. They wanted to perform a nuclear shuntogram (this is where you inject radioactive dye into the shunt) and I told them no way in hell as we've been down this road before and we weren't doing that again. I told them we weren't doing anything remotely like this until they contacted Children's Mercy and talked to either our neurosurgeon or whatever pediatric neurosurgeon that was on-call. I instantly no longer had "friends" at Stormont.

I kept getting the run-around that they couldn't get a hold of anyone from CMH, or that they were waiting for a call back -- blah, blah, blah! I wanted some answers, a game-plan and I wanted it NOW!

I decided I would take it upon myself to get things rolling and I started called the neurosurgery department. I called every 5 minutes and left a message ... over and over and over again. In between those phone calls I started calling the Ophthalmology and Special Care departments in an attempt to have one of those nurses personally contact a nurse from neurosurgery, and then in return, the neurosurgery nurse would actually call me back. Come hell or high-water, someone was going to be calling and helping me.

End result?

I got the Stormont hospital the name and number of the on-call neurosurgeon, and as a "just in-case" kind of thing, I also had the neurosurgeon call Stormont himself.

It worked! When in doubt -- DO IT YOURSELF!!

It of course was decided to not do anything else to Jocelyn and instead, ship her directly to CMH for further evaluation and treatment. The waiting game commenced until we finally got an ambulance to ship Jocelyn out.

The trek from Topeka to CMH is quite a bit longer, so this time Justin rode the hour plus drive in the back of the ambulance, and I followed behind them in the van wishing the entire time that I was the one sitting next to Jocelyn.

Once we arrived to CMH everything instantly was different. They already had surgery prepped and ready if needed, and a whole team was waiting and ready to pounce into action. This is merely one difference between CMH and every other hospital we encounter.

Within 15 minutes of arriving to CMH, the staff had everything they needed accomplished (including the CT evaluated) and the neurosurgeon was already tapping Jocelyn's shunt to check it's pressure and for any possible infection. From the results Dr. Hornig didn't feel like there was a shunt failure or infection, but yet the shunt valve pressure didn't seem to be "strong enough" or functioning quite like it should.

The decision was to take Jocelyn into surgery with the anticipation that only a partial shunt revision would be needed (which meant replacing the shunt valve that is inside the brain), but with the possibility that once they got in there, she may require a full-blown VP shunt surgery (aka terrorize her with pain from the top of her head down to her abdomen).

After what seemed like eternity (although only really 2 hours), Dr. Hornig said he only had to replace the valve and not perform the entire surgery which was a relief after the day we have had. He told us the pressure in the brain was high but not terrible (it was at 18 psi and the pressure inside the body is normally at 15psi), but that we would have to wait and see if this was going to solve our seizure problem. He was also very sweet and apologized for her "bad haircut." I told him I didn't care as long as he made her better and he replied "Well, I hate to do that because she is so darn pretty." Very sweet of him to say and of course made this mama beam even in light of everything.

So here we are, spending the night at CMH ... again. Justin is asleep on the sofa bed and Jocelyn is in her bed/crib on her way to recovering I hope. She has been in quite a bit of pain tonight and she's letting everyone know about it. She is so funny because she's got the "if you touch me one more time I will sock you in your face" look down and isn't afraid to let you know it. She's being a turd because she keeps wanting to rub her head, then of course it hurts, she's ripping off her oxygen cannula, tearing her pulse oximeter off no matter where we put it, trying to pull her IV out and I'm like wait a minute here sister ... where did you come from?? All of these things are very good signs though that I welcome openly.

We will see what tomorrow brings and I pray its no more seizures. I'm sure we will have updates and maybe even some pictures of her gnarly warrior scar to add to the many others she already has.

With every ounce of sincerity that I have, I love you all of you immensely and thank you for supporting us along this ever winding journey that is filled with peaks and valleys!

YWCA

... or actually is now Berkshire's Great Life Golf & Fitness and they gained a few new members ... US!

Well, at least for a little while anyways! :)

This last Monday our infant child development (TARC) gave us a free, temporary membership to the YWCA (we will have to give back the card once Boogie graduates for the program at three). But uhm, HELLO!!

Does that not totally rock???

This means that I can take Jocelyn to get her cardio on during open swim more than once per week. Prior to receiving this membership, we have been using the free open swim time at the Easter Seals Capper Foundation which they so graciously provide every Wednesday from 4-6pm. I'm so excited to have the opportunity to take Jocelyn more often and not have to pay a big membership fee just so she can swim.

Normally Jocie loves the water and its a great way (actually pretty much the only way) she can get her heart rate up on her own (from something else other than crying). So on Monday we had our first swim/therapy session at the pool with our therapist/coach/friend :) and revamped a few of our exercises.

Today, we went again and Jocie was a serious cranky pants crying virtually the whole time. It echos really bad in an indoor pool so that only made my ears what to bleed, and apparently bothered some of the older woman that were finishing up their workout session. They got a workout in, can't we? There is a reason for "adult swim" vs "open swim" ... so that kids and whoever else can come to play and yes, that does mean there's going to be noise people.

So anyways, Jocie was mad about swimming in general and especially when I incorporated a few therapy exercises. This one lady goes out of her way to say "you know, a GOOD mother would see that their child is upset and doesn't want to exercise." Initially I kind of wanted to snatch her by her hair and pull her in and under the water, but instead, I told her "I would advise you to mind your own business" (of course my eyes squinted and then the raised eyebrows came out like "I wish you woooooould say something else"). As we stood there starring at one another (I'm not sure what she expected), I then told her "We're done ... move along" as I motioned her to get away from us with my hand. I wasn't trying to flip the "bitch switch" but geez, you obviously have no idea what you are talking about and definitely do not know our situation. So thanks, but no thanks ... keep whatever wee little motherly advice to yourself.  As my friend said today, there is just zero respect these days. I'm sure if you ask her though, I was the disrespectful one!

Yes, Jocelyn was a crabby-patty today, BUT -- I got her sitting on the pool stairs nearly chest deep, ON HER OWN, while simulating a mini tsunami. No joke, after I noticed how stable she was and how well she was accommodating to the little waves and not trying to inhale the water, I upped the ante and got after making her work really hard. You'd be surprised that she actually LIKED that portion of our pool trip. I think she just enjoys watching mama be silly!

Even with the crying, we had a relativity successful therapy/play session and that lady can kiss my butt! If I stopped everytime Jocie balked, then we would never do anything or make any progress. I'm sure Jocelyn was tired ... she's always tired ... for good reason. If you little Ms. Nosey-Pants-Lady had to work hard to see, communicate or move any part of your body -- you'd be exhausted all the time too and not want to do anything. Lucky for Jocelyn, I love her enough to push her to do what she doesn't want to, yet balance that with love and support. I'm not a hard ass all the time!

Towards the end of our swimming session, a big group of older special needs kids and adults joined in the pool. It was actually a nice surprise. I can see why the everyday person might be uncomfortable around people with disabilities. The group was a good mixture of various types of people - one had Down's and a missing leg, another appeared autistic and made a variety of loud, sharp, repetitive noises; another had what seemed like cerebral palsy perhaps and several other types of people. There was one teenager that was very intrigued by us and wanted to stand/swim really, really close to us. I was almost uncomfortable, but he wasn't doing anything wrong, he just kept saying "baby - theres baby" and in return Jocelyn would furrow her brows like "what the heck ... who are you buddy" which then led to laughter when he let out some kind of weird noise.

I'm pretty blessed and today, I'm thankful that my mind and heart have been opened over the last 2 1/2 years, and extremely grateful for generosities like being given a gym pass so little miss ball-of-tears can swim more often!

Election

I wish I was excited and bursting at the seams about the decision to make Obama our president for another four years, but I’m not, and there will be no changing of my mind. I haven’t been impressed with the last four years, and I have a hard time believing anything will “change” for the better in the preceding four years. The “change” that Obama was pushing in the last 2008 election has not been a change that I would have liked to have seen. I for one would have LOVED to have another “businessman” in office instead of someone who has went to law school -- just feel like that’d give America a better advantage to take steps to actually REDUCE instead of continually increasing our ridiculously embarrassing deficit, and maybe even start to make America a commodity once again! I for one want my American dollar to mean something now and in the future. Lawyers are savvy with their words and speeches though, so its easier to make people swoon over them … that’s what they are trained to do!

For those of you that voted for Obama, good for you --- I’m glad we are all allowed to vote for who we want --- that’s one of the good things about our country. However, I always feel like it’s a vote between who is the lesser of two evils ... or maybe I just think this way? Why does it always have to be about Democrat versus Republican? Why can’t it be about what is best for the people with disregard to a specific group? No matter who is in office, I feel like their group party eventually taints “what is best” or “what SHOULD be done” because their “supporters” are the ultimate deterrent.

Sometimes I wonder where these people even come from. Who picked the candidates? The “people” … what “people?” I can sometimes sort of see where they find certain people like Romney for example -- where his father was a businessman and governor, and his mother was a nominee for Senate back in the 70’s -- his family sort of paved the way for him (as with MANY presidential candidates). Yet when Obama came into the picture in 2008, I was like who is this guy and where did he come from? Although I know people found him exciting, refreshing and different -- those are the very things that make me leery of a person.

I don’t care about a persons race or what their religious affiliation is -- it doesn’t make them a good presidential candidate or more importantly, a person with true convictions for their fellow neighbor and with the nation’s best interest in mind. I hate that so many things come down to race and religion. I can’t even count how many times I’ve heard during this election season about “It’s a black thing” or “It’s a Christian vs Mormon thing” … are we really no further progressed as people and a nation. Get over it already!! Perhaps these are the very things you believe to be of importance and what completely defines a person, but I’m more of a “let's go off of what a person does or has done.”

 

Everyone has their own reasons for voting a certain way and it will always be that way. I cringe when I hear or read of people saying “I hope I haven’t lost any friends over this election” or “they just don’t want the black man in office” or the other million irritating things that come across the board. Really? If you loose a friend, or if you’re the person that is deciding to let go of a friendship over election issues, then it wasn’t a friendship to start with. I surely wouldn’t want or need a “friend” (or family-member) that would be that willing to let go of a relationship so easily. So if that is, or has happened to you, you are better off. And if you are the person that thinks it’s a black vs white (or insert whatever race), then you are the most shallow, pathetic person that I don’t really want or need in my life.

 

You hear so many people barking for tolerance, yet those are the very people that don’t possess an ounce of it! I have both tolerance and acceptance, but I don’t have those attributes for people who don’t want to help themselves, for those who WANT a government to do everything for them, to bail them out, to make it easy to not work, to take (almost virtually steal) from me, who makes its nearly impossible to be successful, who wants to control everything I do, who makes my life more difficult, puts my husband in danger because they think it’s a good idea to downsize the military and take away what keeps them safe yet still put them in the same dangerous situations …

 

I love and appreciate true democracy and want to KEEP IT, yet I feel like we are venturing more towards socialism and so many seem okay with that.

 

I find it a struggle trying to understand how a person decides to re-elect a president that so boldly lied about the attack and slaughtering of Americans at the U.S. Embassy in Libya, and so easily turns his back on the thousands of people who are suffering from hurricane Sandy. I would have gained a tremendous amount of respect for President Obama if he would have shown concern and took action towards these things rather than be so consumed about getting re-elected!

 

I’m sure there are lots of things each president has done during their term(s) in office that I wouldn’t ever want to know about as I'm sure it would be both disappointing and disgusting in my eyes. I’m sure if we knew all the dirty little details of things, we would all despise our presidents. For me, its just when you do hear of such things, and they are public especially during a time of election, it just makes me all the more sick to my stomach. I keep thinking “what if that was my husband that was in Libya protecting the embassy?” or “what if that was me and my family suffering from the effects of Sandy and freezing to death with no supplies?” and I'm just using these two examples since they are at the forefront.

 

Lord knows nothing will be accomplished if we spend time being angry and hateful about how elections have turned out (that’s unless you wanted Obama of course). Part of me doesn’t know if I really “wanted” Romney as much as I didn’t want Obama again. I’m not going to bash Obama and rage against him … I just don’t feel he is what America (or better yet, my family) needs in a president. Nevertheless, I will be respectful of him and remind myself that he is not the one that decides all things for America, and this is why we have a House of Representatives and a Senate to help “balance” things … if you want to call it that I guess? Hey, I’m trying to be positive.

 

Soon this whole election will blow over, people will begin to accept (but many will not approve) that we have the same president for another four years, and life will resume to people complaining about the same things we would no matter who was president:

Economy

Medical Care

National Defense

Natural Resources and Gas Prices

Unemployment

          … shall I continue?

 

Pro-Life vs Pro-Choice

 

Gay Marriage

 

Foreign Policies

 

          ... and so many more issues that will never be "resolved."

 

These issues and many more, will always be unresolved. We will just have to hope that we make positive strides in these areas, in our own lives and those we love.

 

Who knows, maybe this time around we can make some positive “change”…??? Here’s to hoping anyways.