Kisses for Chris

Effervescence

Key words here:

Kitchen counter

Ivey

Trash Can

Garbage

Matt

Rubber Gloves

Oh yeah,

Two Green Eyes

Yep, haven't actually worn her eyes in months. But last night we put them in because the lashes of one eye are turning under. Imagine that we took them out, set them on the counter wrapped in a paper towel and they were thrown away. So Matt got to work with rubber gloves and found them in the trash ----Now they are getting a good wash.

That's right, we clean them in denture cleaner!!!! Effervescece does the trick!! Bet you didn't know that!

Just Before the Pose

Randomness of the past few weeks

Tea Party at the church preschool -
For clarification, Ivey will go to the church preschool and to big school during the week. It will only be for a few hours at both places, but she is ready for something bigger than me and home.

The beach with daddy - after pneumonia had passed. I loved the ocean!
First day of school at 'big' school with my teachers

About to start my first day of 'big' school. Making sure my hair looks pretty and all my curls are in place.

The ride to 'big' school. Not a care in the world. Can you see my cute new shorts?

Walker flying his kite at the beach.

Brooke -

My new God sister -

The only one missing here is Walker. He actually wanted to go to bed -exhausted. This many kiddos is the result of only four families. Can you say exponential growth?

Knox at the beach. No idea what he is doing.

Jumbled randomness of the last few week. Enjoy your last few days of summer - we plan to.

Carpenters

On the next to the last day at the beach, Ivey finally made it down to the ocean. She loved it and I have some great pictures to post if I can ever get my laptop working. But that isn't what this post is about, not this time. Of course it centers around Ivey, but this is more about the bridges that we build to secure people in Ivey's life.

While I was pushing Ivey in her stroller from the beach to the pool, another family followed behind us. The little girl with the family, who looked to be around three, walked beside Ivey while her mom was behind me. Since Ivey had been sick and not at the pool all week, the family had not met Ivey; they had met both of the boys. The little girl never looked up to see where she was going. She stared intently into the stroller at Ivey.

It is a stare that Ivey gets almost everyday of her life from toddlers. It is not a rude stare, more a curious stare. A stare that really says, "I know she is like me, but something is different that I don't understand." And being that this look only comes from toddlers, they mean no harm, but do not have the vocabulary to ask - anything.

I am completely okay with that look. The sting of the look never goes away. Not because of my own selfishness, but because there is literally an unspoken barrier that limits other kids from approaching Ivey like they would anyone else. It stings because her life experiences have that extra step that must be overcome for her to make friends.

And so that day I thought about my skills as a bridge builder. Like many parents, 99% of most days I openly give information, or at least try to, not her whole story, just enough to form a stable bridge to Ivey.

That particular day, the mom had yet to 'see' Ivey from the front, remember she was walking behind me. All she could see was Ivey's legs kicking in the stroller. She could hear Ivey babbling away. She could see her little girl staring complexly into the stroller. So she said to her daughter, "She is looking at you, Reagan. Tell her hello. She is talking to you."

And that left me to do what I know is best for Ivey in those situations, not what is 'comfortable' to any one else - not even me. This is just one of the many areas that Ivey pushes all of us beyond our comfort zone. It is what is BEST for her.

I turned over my shoulder and said to the other mom, "Ivey is blind, she does not know Reagan is there. And, with the wind blowing like it is, she can not hear her either. Reagan can see something is different about Ivey and she is trying to figure that out." That was information enough for the mom to look perplexed and embarrassed. So I did what I most often do. Stopped dead in our tracks, bent down on Reagan's level - Ivey's level - and took Reagan's hand and said, "Reagan, this is Ivey. Ivey, this is Reagan." Then I placed Reagan's hand on Ivey's shoulder. We waited there for a moment.

Then we moved on to the pool. As uncomfortable as it sometimes is, properly introducing Ivey is my role in Ivey's life. As we walked on the mom told me Ivey is beautiful. And she is.

Yesterday the boys, Ivey and I went to the Gap to pick out a new outfit for Ivey's first day of school next week. And as always, my boys made me glow with pride. There in the middle of the girl's section a little girl walked over to Ivey's stroller and stared that same stare with curiosity. This time I had had my back to them. It was Knox's voice that I heard first. He asked the little girl how old she was. "Three." Then he introduced himself and his brother filled in with age brackets. Finally he said, "This is my little sister Ivey. She is three too." By that time I had turned around to listen and watch. I looked at the other mom, who looked down at Ivey, who then had the look of 'what should I do'. Her little girl was only inches from Ivey's face staring.

The mom told her daughter to move away. Not being rude, but most of the time parents just don't know what is the right thing to do - how I, the other parent, will respond. She is a mom too, she would not want someone staring at her daughter that way. But, it is okay...
(We, parent's with kids with special needs, especially with facial deformities have pretty thick skin most of the time. You, as our friends should grow that thick skin too.)

I whispered, "It is okay." and waved my hand to back her away from the kids. By then Knox was in mid-sentence. "My sister is blind. She can't see you, but you can talk to her." The mom hesitantly smiled, literally sighed and relaxed her shoulder and said "Tell Ivey your name." Bridge was built. Ivey met a new person and her family. My sons are excellent carpenters. What great responsibility for such little people, but they love their sister.

My point. The standard personal space that we all desire does not exist with Ivey. She needs to know who you are. Touch her on the back of her shoulder and introduce yourself to her....every single time you are with her. Just like you do not mind being patted on the shoulder, neither does Ivey. Always say your name. And if you are with Ivey go ahead and take the reigns and introduce Ivey to the people around her. It might make you fill uncomfortable in the beginning, but it is only us feeling subconscious about ourselves, we are being driven to do something that the rest of the world normally does in a different way... But that is absolutely no reason not to do this. If we do not take these simple steps, Ivey will live alone in her world. It is our responsibility to her. She needs us to do this with her. -- Not for her, but with her, because she IS an active participant in the conversation. -- Depending on the person and the situation, some may want you to teach them a sign or ask more questions. You all love Ivey so do not hesitate, say what you do know. It will only allow that bridge to form to let others into her life - to help her make friends.

Be a carpenter.

Ivey is three with no sign of liking shoes. She doesn't normally protest while they are on, but she manages to maneuver out of them pretty quickly. Maybe we are on to something here. Gwen

No shoes, no shirt, no service

In the news a Burger King in Missouri asked a mom to leave the restaurant because her 6 month old daughter was not wearing shoes, which happens to be a health code violation. Okay - even for a non-walking 6 month old? Her feet were probably cleaner than her hands - or the employees hands for that matter. Apparently, Burger King assessed the situation and said that maybe the worker at the store took the 'no shoes' policy too far. The family was invited back for the royal treatment. Okay-

Around here Ivey hardly ever wears shoes. She hates them, even in the dead of winter. She is a little maverick who can escape any pair of shoes, no matter how tight they are fastened or double knotted they are. Ivey does wear AFO's but our time in them is not what our PT would ask for. For Ivey her feet are like her hands which act as her eyes. They let her 'see' her surrounding environment. I have never really had a problem with Ivey's 'no shoes' policy, except for the fact that I am missing the shoe frenzy that most moms get from buying shoes for their little girls. Oh well- let's just hope that no one starts applying the 'no shoes, no service' to Ivey any time soon.

Sacred Heart - straight from the soaps

A couple of years ago, while Ivey was only a few months old, we decided to still take our summer vacation. Live life anyways no matter what the docs suggested we do - which was to not leave the state - especially the northwest part of the state since it was closest to the hospital. Instead we decided to try to voyage to St. George's Island. We made arrangements, put deposits down, yada, yada, yada. However, by sheer happenstance we also had to visit the neurologist the week before departure only to have him lower the hammer on us. Simply stated, he said "NO - you can not go there". If we were leaving the state we had to at least humor him and stay within a hub with a particular hospital within drive time. So, the brakes were slammed on, reservations canceled and we made impromptu plans for the area around Destin, Fla. - specifically Santa Rosa. Nice , Quiet , and required hospital.

For two years we traveled to the same place - never needed that hospital.

Go figure - this year - found out just how fast my silver bullet minivan can truck it down the highway.

Yes, Ivey had one heck of a seizure, not her worst, but her worst in several months. And in the aftermath of the ER trip we left with a case of pneumonia, which she has never had, and a couple of humorous stories in lieu of our new found friends in the ER. Humorous to us, probably not to the rest of the world.

But yesterday after talking to a friend I got a good laugh because one of the ER docs was just too GQ to be in the ER. Nice tan, gel in the hair (not one out of place), whitened smile - and while we were there I kept thinking he must have stepped out of some Soap. Anyway, I didn't know this but Sacred Heart is the name of the hospital on Scrubs -- Seriously, our life is now literally a soap opera!!!--

Can you imagine that it is also the name of the hospital where just the night before as we were driving to Publix, I made the comment that it was a pretty hospital - as I retold that to one of the ER nurses she said that if I were noticing the 'look' of the hospitals while on vacation I had obviously spent way too much time in them.

Thanks to the staff at Sacred Heart!!