Brother and Sister

Brother and Sister

Home sweet home

Made it home.

My goal is to advocate for those who are truly handicapped.  Ivey falls into the handicap slot under three seperate criteria.  She is physically handicapped, mentally handicapped and medically handicapped.  I don't know if there is some other criteria that I might be missing, but I think possessing one of those components or any combination of the three pretty much saves one of those parking spaces for a person - with no limitation to the mildness or severity of the 'handicap'.  I think seizures are one of those things that you might never know about - but I have made that dead sprint to grab the Diastat left in the car or to get her back to the car - and I promise if that were her only issue - let people glare, because the back of the parking lot is no place to be in those moments. 

And I have been the recipient of plenty of glares, and that's okay - from a distance Ivey is pretty deceiving.  She is still small, so some days when running into the grocery store I can carry her rather than lugging out the wheel chair, it looks like a mom carrying a baby.  In reality, the last time I had her in the grocery store she did have a seizure right there beside the hot dogs.  I was trying to hold her because I couldn't put her on the floor all the while trying to decide if I should bail on the groceries and bolt back to the car or pray that this was a short seizure and we could ride it out in the deli section...and trying to look somewhat discreet...and wanting to scream for our friend Dr. Peek that we passed as he was heading for the check out and wondering if he would hear us if he were still in the store.

I have no discretion to the severity of handicap classifications - my dicretion is only to those who try to abuse a system designed for people who need a larger space for a wheel chair or van, closer access to the building because they are blind and/or deaf and parking lots are hazardous, heart issues, canes, mental disabilities, etc. the list is extensive - because anyone who really needs that spot - would trade places with the person who feels they 'earned' that spot - at any given moment.  And I promise not one cell in Ivey's body earned her spot....but she wears her sign with pride....we all do...you do.

So no - I was never offended - just skeptical that I overstepped my boundaries or wasn't very clear.  My soapbox is for all those people who have absolutely no disability, but encroach on those who do.  For example did I ever tell you about our experiences at Emory where on three separate occasions I witnessed pharmaceutical reps with handicap parking stickers....and they were actually using them....at a Children's Hospital!  For some reason, that's about as low as you can go.  I even approached one of the reps one day and asked her about it.  Now this is a person with a good job which requires great people skills, the ability to lug some heavy bags around, and this particular person had on 2 inch heels. So I asked her what her disability was.....she quickly jumped on the elevator...leaving me to buckle Ivey into her wheelchair and fumbling with her feeding pump....

Here’s Your Sign

You know sometimes I somehow put myself in some pretty humiliating situations all boiled down to living life with and through Ivey, or at least this little part of my life. Fortunately for Ivey – and unfortunately for the rest of society – I get a tad bit involved and on a soapbox every so often. I've heard it called 'being passionate'.

 Our plans for going home have been altered a little today – and that leaves you at my mercy because it will take approximately two or so hours for Ivey's infusion to run – so let's just say I have some time on my hands….

 Most of my people know that I get a little 'passionate' about handicap parking spaces. It has become one of my things and if I were in contest running on a platform – we would be talk a lot about those little spaces and who needs them, who assumes they need them and those who are plain ole idiots.

 Let's just say hanging around this hospital tugs on me a little.

 Anyway, last week I took the boys and one of their friends, along with Ivey, to Chic- Fil- A after basketball camp and found myself in an awkward moment. One I could not ignore no matter how much I really wanted to.

 The parking lot was slammed because it was lunch time. I had circled the parking lot and was just turning into the parking spot – handicapped- since Ivey was with us – when another car pulled in front of me from the opposite direction pointing at the space trying to ease into the space we were already turning into. What?!

 So I 'signed' for her to 'stop' because that's where I was heading. Lucky for the driver there was one more handicapped spot left right next to us. As I was unloading the wheelchair and three little boys the car pulled next to us. Handicapped sign hanging from the mirror. 

 This left me and the kiddos and the lady driving the car to walk into Chic-Fil-A together. As we were walking she apologized for trying to turn in front of us. She went on to say that her mom, who was sitting in the car who was not coming into the restaurant had a handicapped tag and she wanted to make sure she got the space. The line for the drive though was too long so she was going to 'run' in and grab lunch for them.

 And there it began….when things like this happen I get so nervous – my hands shake – voice hitches up a notch – but I know this is my place – I am an advocate , not by choice, but by affliction– and if I'm not Ivey's spokes person / their spokesperson / others like Ivey – then who will be?

 So I stopped with three little boys in tow and Ivey in her wheelchair and asked the lady "Your mom isn't going to come in with you?"

 She said "No she is going to sit in the car while I run in. (Casually) Don't you just hate when all of the handicap spots are taken?"

 On the inside I was yelling 'really, are you kidding me?!'

 On the outside I was calmly saying "So she's not getting out with you?" ……. In my mind I thought, just move on, just walk, but my 'passion' got the best of me.

 As we walked we talked about Ivey's point of view….the point of view of a child who cannot walk, talk, see or hear well….and no it's not just children. It is all people.

These spots are intended to give access to a world that so many take for granted. What made matters even worse was that she parked in the spot marked 'van accessible' .  We love a family dearly who would have to turn away from a casual lunch because no other spot could accommodate their van or access out of the van. I talked about that too. She said well there was nowhere else to park…. she was so sweet and oblivious to how valuable these spots are. And she was so unaware that her mom sitting in the car, who was disabled and not getting out, did not give her a free pass to park there…. It never crossed her mind…

 I said I know, but you have the OPTION to walk across the parking lot – you have the choice to drive through the drive through, but didn't because of a long line – a valuable space became a matter of convenience.

 That sweet girl was humiliated and embarrassed, so was I, but the opportunity presented itself. Once we were inside she was left to stand beside us in the long lunch line…..and the pressure got to her. She actually jumped to a line as far away from us as possible breaking ahead of other customers in a rush to get out of the restaurant. The entire time I watched her. She barely looked up from her feet. You could tell she had never thought of it from Ivey's perspective.

 And I get it – most people are never faced with a truly disabled person who relies on those spots. They are never exposed to people like Ivey, so the dire need has never been experienced – and I also know that there are some disabilities not present on the outside. So I don't think the spots are only for the wheelchair bound, or the likes thereof. I even know that I probably look like the bad guy some days – especially from a distance. From afar, Ivey looks more like an infant and her wheelchair looks more like a fancy stroller. But that is not the case. She is four and should be walking – and on more than one occasion I have had to sprintto the car because of her seizures – and as time goes on, Ivey will need to walk ….


 And think about if from this perspective, we all wear a sign, some a little more prominent than others. Ivey's signs are pretty noticeable – come hang out in this hospital awhile with us and you would be astonished what some of these kids accomplish.  Asking for a convenient parking spot surely isn't asking too much.  Ivey kind of blends in around here. But out beyond these walls, she is quite unique. Her life, like so many others, is filled slap full of challenges, challenges that would leave most of us hiding under the covers to never leave our homes. But not Ivey, she is full of life, so why wouldn't we speak up for her and all people like her, educate those who don't quite get 'it' and fight for them against the ones who just don't care? It is so simple, so easy to do.

 Well, that's my soapbox for now – handicap parking….it's for the handicap. Find your passion if you can and if you can't, you can borrow some of mine – there's plenty to go around.

 All this talk about Chic-Fil-A reminds me of another great God moment that happened not too long ago, but that is another story…and a great one.

So this is my plea – and your opportunity to be an advocate without too much effort. Park further away when you can. Enjoy that you can walk, talk, see, and hear. And if the opportunity presents itself, speak up, because you can and because it is the right thing to do.

Was it a mirage?

Another night admitted

It was decided that Ivey would remain another night. She has been on and off. She has bounced between play and sleep all day. Her temp is down, no seizure activity today; still fighting an infection – tomorrow she will receive another infusion of an antibiotic and have blood work –

At this moment I am begging her to sleep – Yesterday's excitement has finally swept over me. She seems to have a different plan for the moment.

We'll see where we are tomorrow-

 

 

Hospital Little Rooms......

She had a great night - slept through (with the help of large doses of seizure meds).  So far today she has slept the majority of time.  During her up times she plays with her favs.   I have engineered her a makeshift little room out of her crib (just call me McGuyver). She is happy but tiring easily.

And for the record she is missing her Daddy and brothers.  She keeps asking (signing) for them..over and over..

Now waiting on the docs to see what happens today.

She's Back --

Look familiar? 

Today Ivey had a terrible seizure.  After approximately a hour and fifteen minutes of non-stop seizing -even after Diastat- the great team at Floyd finally got her under control.  They are a pretty amazing group of people. 

Now Ivey has been admitted over night into Scottish Rite to try and nail things down.  Just moved from the ER onto the floor. Feels like a second home.

Just when it feels like we have these crazy seizures tamed - wham - they rare up again in full force.  Despite that - Ivey has some amazing little angels in her life.....her brothers.  Today this one hit mid-afternoon.  Ivey's brothers are aged well beyond their years - almost too responsible, grabbing the Diastat, lugging the suction machine, helping pack up the car.  Not to mention Ivey's other angels that took the boys, rearranging plans, literally in a moments notice.  The one who sat with her in the ER.  And the angel that she asks for even when he's not there - her Daddy. 

We (Ivey and I) love you all very much and miss you.  Ivey is sleeping sound.  The nurses and respiratory therapist just wrapped up meds, so hopefully I am heading for a nap.  Looks like there  is an infection so they started an antibiotic via IV. Hopefully she will be home tomorrow.

In the meantime....

I really hope the Tooth Fairy doesn't forget to visit Knox tonight.....he pulled another tooth today.   

Sleeping Soundly -

Rifton Pacer......Goin' Goin' Gone...almost

 

Our Little Minnow

Ivey and Taylor July 2010

Laughter

I thought about 'what' can make her laugh, but maybe the real question is 'who' can make her laugh...

My girl is in a League of her own......

The Creepy Crawly

So I'll admit that I can sometimes get a little freaked out about Ivey, and it's not just her blindness – it's the combination of all of her 'stuff' that can limit her understanding of her environment.

I seriously doubt that you have thought about it from this angle, but sometimes it's the weird things that get me –

Like this morning. I got up to let Ivey's nurse go home - was in the middle of brushing my teeth – and BAM….. I felt that creepy crawling feeling on the back of my thigh like a bug was crawling up my leg.

Chills went down my spine and I commenced to jumping and swatting - desperately looking for a mammoth spider…. and nothing – just my shirt tickling my leg.

Now how do I explain that to Ivey?

Creepy Crawly Bug or Nothing ………

Better yet - What is a BUG?

This stuff is proving to be liquid gold – getting it in her seems to be the hard part

Wednesday Ivey had her IVIg infusion here at the house. This makes for the second infusion ran by an infusion nurse here. It was nice not driving to Emory or Scottish – almost. The nurses running the infusions are doing their best – but Ivey is a hard stick and it takes several tries, and we are in a predicament. Don't stick again – don't get infusion – feel crummy and plagued by sinus infections and seizures….or go for it again; or more than again if necessary – and Ivey feels better. So for the second infusion in a row it took the nurse, me and Taylor to hold Ivey down for her IV. This is definitely not something I can imagine doing every month. Which this leaves me to wonder, why didn't Ivey get my monster veins? Little tiny rollers is all she has, and one that gushes, but doesn't cooperate with the needle.
BUT… this time no bad side effects! We did a regime of medications before and after the infusion and I think it's the right combination. Woo hoo. And……48 hours later Ivey is on GO…
This stuff is liquid gold..!

Ivey and Ava -

Let's try this. Not so grainy?