1.25.2009

MAPS Newsletter Article

Sometimes You Just Have To Laugh

To say the least the world of prosthetic eyes has invoked experiences that I never could have imagined, even in my wildest dreams. We, like the rest of you, have had to learn new terminology and learn how to raise a well-rounded blind child (and in our case, well-rounded siblings too). So I would say life is a smidge different than the original blue-print. Yes, different. And not so much because of the drama of explaining to people that Ivey does not actually have eyes, but more so learning to laugh, when we can, in the oddest situations that we tend to find ourselves because of her eyes, or lack thereof.

You all can remember that first visit to the ocularist. I do not know about your experience, but ours was a little rough around the edges. Ivey was only weeks old and there we found ourselves sitting in this office that we never knew existed waiting on this person to come out to meet us and give us a set of eyes. Emotional does not quite cover it.

The actual moment of meeting the ocularist was worse than anything I could possibly have imagined. Now do not laugh, but of course at the time, I was still trying to figure out just how someone came to actually want to make fake eyes for a living. Obviously, it was not an area I had ever put thought into.

Anyhow, a man welcomed us into this office and began talking, but all I heard was the sound of the teacher in the Peanuts talking. "Wankkkk. Wankkkk. Wankkkk….." I was traumatized. He was beaming at photos of people he had made eyes for; all the while I was petrified. He even pointed out a picture of a horse he had made an eye for. Image. Somewhere in the conversation he lifted his closed fist to me, I offered out my open hand, and then about five little eyes dropped into to my hand to only stare back at me. Needless to say the meeting was over for me. Yet we still went home with a set of conformers.

Looking back, I can only laugh at the irony of the situation. I should have gotten a since of humor sooner.

There are countless stories about Ivey's eyes that we joke about, and only in good humor, but none makes us more proud than recanting 'The Elevator Story'. To make a long story short, Ivey does not like to wear her eyes. Therefore, she literally plucks them out whenever possible. Being that you all 'get' where I am coming from, imagine an eye falling in between the floor and the elevator, which happens to be about an inch wide, if that, down the elevator shaft from the third floor. Sounds impossible, yet it is. When it happened we laughed, those who did not know us must have thought we were nuts. Imagine explaining to security that you need to go down to the basement to find an eye in the elevator shaft. Obviously, that takes some explaining on your part and an imagination on their part. Apparently, for those who do not have children with BA or MA, that particular situation is one deserving of sad tears. Needless to say, we laughed until we cried.

Ivey has not worn her eyes in over a month now. Like I said, she is plucking them out left and right, day and night. On top of that she is putting them in her mouth and chewing on them like bubble gum. So after a long battle, we put them in a drawer until a later time. Last night I opened the box they are kept in just to take a peek at her beautiful green eyes. I miss them sometimes. Imagine my surprise when there was only one. So now we are down to one eye, and so far no chance of finding the other. All of which has nothing to do with the current topic, except to think that somewhere in that there has to be a funny story just biding its time.

My point, sometimes you just have to laugh. We need not always take things so seriously. In between IEPS, therapies, specialist, etc, our children's lives revolve around serious people; it is our job as their parents to laugh, to teach them to laugh. Most importantly, sometimes we need to laugh.

1.22.2009

Filing this away

into my category of "So this is my new normal"'s.

For those involved, it probably did not really play out like this. However, in my desolate, panic stricken, maniac mama mind that has evolved in light of our daughter, to this file it goes.....

This morning I, along with three others, went to our 5:30 am, that's right - for all you lazy folks, that is AM, group training. Hence, we pounded the gym for 45 solid minutes that I am most certain my body will remind me of as I contemplate a maneuver to get out of the bed in the morning..trying to figure out exactly why I am sore in places that I didn't even know had muscles... That's okay come February 8th all will prove worth it (I will explain that later).

Anyhow, after running 15 minutes late, no less due to showering after a brutal workout, Ivey and I skipped off to an appointment with her GI doctor, which by the way, is on the third floor of the pediatric wing at Floyd. Remember third floor, that tidbit of information will play a vital role in just one moment.

Backing up for a moment, recall that when traveling with Ivey one very important bag - THE PINK BAG - always goes with us.... always.. Also important, it's always with us except when mama, hence me, has brain freeze and leaves it in the car in 26 degree weather.

Back to story, we get all the way up to the third floor after traipsing across the parking lot at Floyd, hence, no spots close to the door, and all of you know how far a walk that is from the back of the parking lot....in 26 degree weather....after a brutal workout....carrying a 20 pound child and pushing a stroller full of all of her 'stuff', except for the pink bag. It is back in the car in the back of the parking lot.

We get up to the third floor and you guessed it, she strikes out in a small seizure. I don't panic often, but needless to say, I freaked out a little bit. Luckily, we were standing in the peds hallway, hence I handed Ivey over to a sweet nurse and struck out in full sprint.

Now let's back track. That would be from the third floor, down to the lobby, out into 26 degrees weather, across one gigantic parking lot and did I mention it was after a brutal workout? Needless to say, fight or flight kicked in.....back across the parking lot....at this point I was conspiring the murder of my friend Martha- my legs went numb-.......back into the hospital.

At this point for some very not-so-smart reason, I actually jumped on the elevator. Really? Which went down to the first floor first, during which time I said some not-so-nice things. Reluctantly, I stayed on the elevator and made it back up to the third floor. Needless to say, barely breathing.

So here's to my new normal and running around like a chicken with my head cut off in public.

Ivey got her Diastat and was fine. For the second time EVER, her Diastat worked. As of right now she has been seizure free the rest of the day with no trip to the ER. Cross your fingers for tonight.

Oh, and once I got everything situated, I realized there was an extra Diastat in a bag already with us.. up on the third floor.

1.14.2009

As we try to teach our children all about life......

Our children teach us what life is all about.....
~Unknown~

That is a quote on a frame that surrounds a picture of my children. It triggers limitless thoughts. Memories. The future.

I glanced at that frame today while I was hastily pedaling away on the elliptical machine. Below me Knox watched cartoons, Walker played with a toy and Ivey wiggled away on her piano mat. Watching them made me smile. I can't wait to find out what new lessons lie in store for me.

1.08.2009

Reaching

As most of our family and friends are coming to learn, and especially Matt and I, Ivey does not do most things in a traditional manner. She is quirky. Her own little self. And, the things that we 'sighted' people tend to lean on and more so DEPEND on, just do not exist when we are with Ivey. It is natural for Matt and I now, and I most often forget that my interactions with Ivey are not 'typical' until I hold another baby or talk with another toddler. Primarily, they make eye contact and respond to facial expressions. Ivey does neither. What she does do is make you use other senses and qualities beyond 'sight'.

Point being, Ivey has never 'reached' out for me. I have never really ever given it much thought, except when I see other babies reach for their mommas. So we have worked on her signing. Every so often she will reach that sweet hand up to her mouth and sign 'momma'. And now she has developed the habit of reaching to find my hands and then sign 'momma'. She babbles 'mom-ma' all the time and it is distinct and very loud when she wants me specifically. Even Matt has conceded to that one. She has also learned how to reach 'up' when she wants to go up. So sometimes you may look down at her sitting in the floor with her arms raised up just patiently waiting for someone to notice, and grab her up. It is the sweetest gesture.

But even out of those three things, Ivey has never 'reached' out to me.

I do not talk about it much here. But my dad and Ivey have this bond. For any one who knows my dad, it is undoubtedly a very special bond. And my dad is a very private person, so I try to respect that and keep his relationship with Ivey, just that, their own special relationship just between them. But today I have to record one of the most special milestones that Ivey has reached to date.

My dad came by for a few minutes today - I was holding Ivey and carried her to the door way to see him. Normally, I tell Ivey who is here, who is coming, etc. But with my dad, to watch her smile he whispers in her ear is priceless. Ivey glows at the sound of his voice.

So I carried her over to him and he leaned over and whispered to her, and she smiled that big smile....and then for the first time ever she threw her arms up 'reaching for him'.

She has never signed 'up' at the sound of my voice to take her back, or Matt, when someone else was holding her.


Amazing.

That baby girl loves her Gran-Gran. And to witness how much he loves her is life altering.

1.06.2009

God Bless The American Housewife

Okay. I am mired down in 'stuff', just like the rest of the world. So, here's my question. How do you, other special needs families, get it all done? How do you get the house work caught up after the holidays, spend quality time with the ones who need it, practice signing, keep hearing aids in, keep the feeding pump on schedule, (thank the Lord the eyes are on hold), talk to family and friends (well, actually, right now, just return phone calls in adequate time), check emails, keep the follow up appointments, schedule the needed follow ups, keep the therapy schedule, and somehow maintain sanity?

Is there really such a thing as sanity?

Just curious.

I am questioning mine right now.

It's the first full week of January and I am already behind, umph. And to imagine, I actually have friends who think I am organized.

So seriously, will all of you out there (with shiny tieras and rubber gloves and don't forget the minivans) give me some hints as to how you get it done. With a smile on your face.

If I never post again....I probably suffocated in dust bunnies-

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