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.

Sad to Surprised

Sometimes I have days (or for weeks it seems) where I'm in a funk. There are days where I just want things to change, progress ... be DIFFERENT ... so badly, that I can get discouraged at times. I know we all have those days, just in regards to different situations.

When you have the realization that you truly have a vast knowledge bank and are doing everything you possibly can in regards to therapy, teaching, offering opportunities, etc for your sweet kiddo and not really getting what you desire? Its disheartening. When you realize that you virtually have every gadget and resource for where you are at on your journey with your sweet special needs daughter and there is nothing more you can do but keep doing what you are doing? Its disheartening. 

No matter what you tell yourself, you still keep hoping and praying for that magical thing to come along to make things "click" or "come together" and it may or may not happen.

So even though Justin's birthday was yesterday and it was a time for fun and celebration, I found myself sad and having sort of a little pity-party. I have had many consecutive nights with interrupted sleep, and yesterday was a day full of crying, whining, vomit and poo that were seriously disgusting and makes you sometimes wonder if you will ever feel better about things. The reality is that just when I think we've got a grip on things, something happens, changes or new things come up and having that feeling of the "rug pulled out from under you" is not ever welcoming.

When I laid Jocelyn down for her nap yesterday, I had such a heavy heart. When she woke up, I placed her on the edge of her bed just to see if she could sit on the mattress which of course is a squishy, soft surface and much harder to sit on (or at least its hard for someone that has cerebral palsy and muscle weakness). To my surprise, Boogie sat on the edge of her bed for at least 15 minutes (but I'm sure it was much longer). This is what she looked like the entire time we sang songs and read a few books.

{Front View: Isn't she the CUTEST??!!! Look at that stinky little face! She looks pleased with herself and loving my singing apparently ... either that, or she's laughing in my face at my rockin' voice! Ha! She looks like she's actually standing I think.}

{Side View: Yep! Still as cute as can be but you can see her sitting better here! She's in a sleeper because we went swimming before lunch and with it being so cold yesterday, I kept her in it for naptime to warm up!}

Needless to say, seeing her this way turned my whole day around! What a gift!

Happy Birthday Hot Papa!!!

Today the Hubby's 32!!!

 

Happy Birthday Lover Boy!

 

I've always thought my fella had a mighty fine booty ... guess he's always had a cute butt!

{He is going to KILL ME for posting this!}

 

You were the cutest cowboy on the farm ...

 

An amazing fish-master ...

and a fierce wrestler!

 

But what I love most?
 

Is that I will get to celebrate many more of your birthdays to come!! Can you believe you've spent a 1/3 of your life with me already??? If you ask me, I'd say that makes you lucky ... oh wait, I'm the lucky one! ;)

Boogie and I took some pointers from a friends work and Pinterest to make a fun birthday candy poster for daddy today.

 

We have some friends that are going to help distract him this morning so it can be snuck into his office here in about an hour. I'm excited hahaha -- it doesn't take much for me to get giddity! :)

 

We even took a birthday morning picture -- it's pretty bad but oh well -- I share the good and the bad! Daddy actually already got a shower while Jocie and I still have crazy, curly bedhead hahaha!

{Boogie was NOT going to let me capture her 1st thing the morning! haha Oh well, maybe we'll snap a better one later today.}

We love you SO MUCH Justin -- Happy Birthday Honey!! I hope its half as spectacular as you are!!!

SPARKK

First ... what the heck does that stand for?

Special Parent & Respite Kare for Kids

 

SPARKK is a special program sponsored by the TARC Children's Services (ie the Infant Child Development) and the Shawnee County CDDO. This special program ... or actually its a respite care program to be exact ... functions because both TARC staff members and other volunteers, offer their time, talent and love to ensure a safe, fun place every other Friday night for children with disabilities or delays.

 

Those families that qualify (meaning the parents have a child with disabilities or delays) can utilize the SPARKK program once per month, from 5:30pm-9pm for only $5.00 per child. The icing on the cake for some families is that SPARKK also welcomes siblings which means the parents truly get a BREAK!

 

Of course prior to getting to use this program there is an application/enrollment process with lots of additional information provided so whoever cares for your child, knows them as well as they can prior having them under their watch.

 

During a kiddos stay, the staff offers fun activities, supper, access to an enclosed playground for kids of all abilities, lots of toys and many other types of support.

 

Why do I sound like I'm making a PSA? Its because for the very first time, this mama-bear utilized this program tonight!!!!!

 

Can we say -- way to take a huuuuuge step mama?!?!

 

Even though Justin and I could have actually went out to dinner BY OURSELVES for once, we didn't. Justin had to fly tonight so that was definitely not happening, and since he was not going to be around I originally had thought, "why bother taking her when its just gonna be me," and then immediately thought "well, why not?"

 

So tonight was our big night of separation! When I say first night of separation, I'm talking about this is the very first time that all three of us have been apart from each other!!! There have been maybe three occasions where the grandparents have watched Jocelyn for a few hours and we have went to a movie, but that's it. When Jocelyn went to preschool I didn't even leave, and here I was planning on dropping her off, providing some last minute directions, giving her some mama kisses and then walking.out.the.door!!!

 

I am proud to announce that I did just that --
I LEFT!!!

 

I have to say though, the staff made me feel so at ease with their knowledge, enthusiasm, energy and confidence that I felt GOOD about leaving her there -- you just can't buy that folks!

 

The plan was just to leave Jocelyn for 1-1.5 hours since it was her first time, and because I would need to feed her supper (with it being her first time, I didn't want the staff to feed her via g-tube right away).

 

So what did I do for my 1.5 hours of freedom?

 

I went to Barnes & Nobles for Starbucks and some book shopping -- ALONE!!!

{Yes, I really was this excited hahaha - My skinny peppermint mocha tasted amazing and I was happy to find Jocie a book I've been wanting for her! You would've thought I won the lottery by the looks of this face! :D}

When I got back to pick up Jocelyn, everyone was gushing over all the stuff they did, how Jocelyn loved the swings and toys on the playground, being read too, how much fun she had -- which was very obvious!

{She was sooooo wound up! Made it smile!}

I would be lair if I said I didn't have moments of brief panic or worry during the time Jocelyn was at SPARKK, and especially when I realized that I didn't put their phone number in my address book. When I was browsing the books it dawned on me that I didn't have their number and I thought "Oh my gosh, what if I need to tell them something?" But seriously, what would I honestly need to call them about in that short period of time? That's right -- NOTHING! Just being an anxious, protective mama, but who can blame me.

 

This is a program we will definitely be using again and maybe we will shoot for a full 2 hours next time? Who knows, daddy might even be able to enjoy time with me as well? I'm excited just thinking about it and thats a great feeling!! :)

 

I'm beyong grateful for the SPARKK program - such a blessing!!!