Perspective

The fair started up tonight. Officially fall. For me, it is a little more than that. It is a mile marker. The first fair after Ivey was born I couldn't help but wonder how we would ever get her there-let alone, enjoy it. The second time around (last year) she was at the fair– loving it. Today as we drove home and passed the fairgrounds the conversation centered on 1) another year has passed 2) we can't wait to take the boys and Ivey. I guess it all comes down to perspective.

P.e.r.s.p.e.c.t.i.v.e.

Once upon a time there was life before Ivey. A different time, a different person. I admit – Ivey has changed me. She put my life into perspective - quickly. At times it is refreshing, other times it is harsh reality, but most of the time she pulls us back to what is really important in life.

Every year the first night of the fair holds the exhibitions of the local cheerleading squads. At one point, I was fortunate to be a coach of one of those squads. Lots of work. Hectic practices. I was always proud of my girls.

When Ivey was born there was a moment that all felt lost. I am ashamed to admit that I could not see past the end of my own nose. As much as I love sports, how would she ever ……..do those things? I was focused on her disabilities. Stupid Stupid Perspective.

This year our town's local cheerleading gym, HotShots, has a new cheerleading squad - The Shining Stars. This competition cheerleading squad is comprised of special girls who have parents and people in our community who asked the question….Why not? So they have worked hard, and did their first performance in the fair's exhibition cheerleading performance tonight.

Now that my mind is wrapped around Ivey and all of her Abilities, why shouldn't she be able to be one of those cheerleaders when she is old enough? ….she is definitely a shining star. The countdown is on until Ivey is up on that stage......cheering and dancing her heart out....that would be quite a milestone wouldn't it? My heart understands now that yes, Ivey can do anything our hearts desire. It will take creativity, patience, heart, elbow grease and a positive perspective. It is possible and this reminded why....

Tonight I got a text message from my friend, a cheerleading coach, Ivey's Godmother…..

It simply said…… "The Shining Stars just performed. It kind of puts it all into perspective."

I did not get to see their performance either, but I am left to imagine the impact of that performance on the members of our community who were watching them.

Congratulations Shining Stars!!!! And everyone who is supporting them along the way!!!!

A Real Bubble Bath

Drum roll please.

Can you tell what's going on?

Of course not. It just looks like a bubble bath, right?

Well maybe.

For Ivey this was her first bath EVER that water ran down her face…around her neck!

Sound like a small feat? Well maybe – for most.

Remember back once upon a time there was an ng-tube in her nose and tape all over her face….then there was a trach……now there has been an open hole in her neck (covered with gauze)….all of which means no water, just a sponge bath on her face and neck.

Well, I think the opening from her trach has closed!!!!!!!!!!!!!!!!!!!!!!!!!

Finally after two and a half years there are no coughs, sputters or gagging. Just one great BIG smile from water tickling her neck!!

For the first time…… a real bubble bath!!!!!

(It's hard to see, but there are bubbles everywhere!)

What a day

Early Morning



Midmorning

Asleep?

Noon ...... such a big day

We are definitely not the brady bunch

Nothing like a little Brady Bunch sing-a-long is there?

Don't you think Ivey is doing a great job at preschool? She really loves it. I think this will be one of the best experiences Ivey will ever have. Ever. She is painting, gluing and playing on the playground. It is so wonderful. The best part is the other kiddos. They love her. There is one little boy in particular who has really taken to Ivey. While we are there he tends to stick close by and bring her toys. He hardly left her side while on the playground, which is funny considering that 2 year olds don't normally play together, but around each other.

Ivey's first day on the playground I took her over to a little jiggle car and put her in (driver side). He climbed in (passenger side) and kept shaking his head at me and saying something in 2 year old lingo that completely went over my head. Finally I got it. That sweet pea just wanted to drive Ivey. So we switched seats. He made sure that Ivey was set and ready – hangin on' – before he drove away in the jiggle car.

So the other day I went into the school to pick Walker up and this little boy was sitting waiting to be picked up and he just kept staring at me with a very perplexed look. Finally he asked me, "Where baby?" If only he knew how happy he has made this momma, and I know his momma would be so pleased with him.

Unfortunately, last week Ivey didn't make it to preschool. Midweek she had a bought of seizures that finally landed us in the ER. I tell you my mind is about to explode from these things. They just crop up out of nowhere. Every time I think we have them under control-bam-here we go again. And there seems to be no rhyme or reason, no clear signal or sign.

Tuesday at 5:00 her seizures started. They only happen at the worst times of day. I mean seriously, if we are going to deal with these crazy things, why can't we have some say so in when they happen?

Anyway I am sitting in the floor amongst the Bermuda Triangle on Tuesday afternoon at 5:00 pm –Ivey is in front of me seizing. Knox is on my left doing homework (needing help). Walker is on my right trying to do some magnificent swan dive from the fireplace over the arm of a chair (which is against all rules, but works when mom is preoccupied) and wanting me to tell him how great his 'flip' is. Of course everyone is starving. Okay. No big deal.

Coincidentally, at 5:00pm Matt's office phones switch to voicemail. Hence, the only way to speak to Matt past 5:00 is to call the extension. He didn't answer his office phone or his cell phone. Figures. Oh well, this is a reminder for me to get the extension numbers of every one in Matt's office. Remember that.

So I am telling the boys to hang tight. It's been a good five minutes of seizing so I need to administer Ivey's Diastat (rectally no doubt), call doctors, try to find Matt, keep timing the seizures (Ivey's are so long-never less than 15/20 minutes on a good day), remain calm (questionable), help Knox, detain Walker and try to find backup to get here in the event I need to take Ivey to the ER (prepare for all possibilities). Whew.

By George, these seizures will not take us down. Just think we finished the homework, Ivey got her medication and Walker is ready for the next Olympics.

All funnies aside, the first seizure was controlled. All members of the Bermuda Triangle survived. But par to schedule, about three hours later the second round of seizures started. Luckily, Ivey's nurse came in at 8:00 pm that night. So we all monitored Ivey, called Miranda and Wesley, packed up and headed to the ER.

After an IV and right at an hour of almost solid seizing, Ivey settled down. You know the seizures are scary, but not the worst part of it. It's the needles. If you have seen Ivey this past week, you probably noticed that both of her arms and one leg have nasty bruises due to the search for a good vein to start the IV. I would have them stick me a hundred times over if I could.

And then there are the boys. If I can thank the good Lord for anything, it's that they are normally in bed when the long ones hit. (File that away, the bad ones are almost always at night.) The boys don't see us discussing what to do, calling for someone to sit with them, packing bags for a hospital, see their sister in distress or witness the urgency. They normally sleep through it all. Tuesday they never knew that Miranda was here, watching over them until we returned. All they know is that they were tucked in by mom, dad and sister and that is what they woke up to.

This week Ivey's back to herself. Right now she is playing with a pie tin making all kinds of noise and somehow, Walker is sleeping through it all.

the SUNSHINE

Playgroup

Preschool

pink glitter fish

painting sunshine

going for the taste test