Game Day

Walker and Matt made it to the game with Uncle Ric, Zoe and Pete. Unfortunately, Knox woke up Saturday morning with a fever. He and I stayed home and watched the game via TV. Ivey spent the day with her Godmother--an Alabama fan--but we forgive her and love her anyway.

Ivey's outfit is from Christa. Adorable.

Then there are the cheerleading pictures of Tiffany. These are for Dee. Dee has been Ivey's nurse going on two years. Imagine the sheer joy in Matt's heart when Dee said her daughter attended UGA, let alone cheered there. Tiffany is one incredible girl with one incredible momma-just like family to us. And Dee loves Ivey just as much as she does her own daughters. Tiffany is the one in the middle with the awesome arms!

I Just Wish

I have to admit for the first two years of Ivey's life I was a closet "I Wisher". I would prance around in public screaming everything is fine, things are going great and then run home slam the door, bolt it and scream out all the things I wished were different. I especially 'wished' for those 'normal' things that happened to 'normal' children who lived in 'normal' families. So my poor husband and mom were the proud recipients of my well wishing-which is not a pretty sight. I am not sure if it was Ivey's trach coming out, her turning two or a culmination of the two, but some of the 'Wishes' that seemed so impossible were starting to seem reasonably possible around last April.

Some time around April I also remember being asked for the millionth time to recall Ivey's medical history and what doctors predict of her future to another new member at a clinic one day. I just couldn't do it again. So I just said, "We don't know her future. No one can tell us since they haven't dealt with this particular chromosomal abnormality; therefore, we are shooting for the stars and plan to land somewhere among them." Blanket answer for everything Ivey. Sounds pretty profound, huh? Well, I was just trying to get out of regurgitating information, but I think that might be the exact path we are on right now. It's kind of like wishing on a star, just not any particular one.

With all that said, it leads me to this. There are so many attributes to Ivey's life that very often are bittersweet. However, it is the bitter that makes our slice of the pie so sweet. When Ivey was born there was an instant 'knowing' that her life was about to be different that any thing Matt and I could wrap our minds around. Our family knew it. Our friends knew. It did not take long for the dark corners of our minds to contemplate just how different our daughter's life would be and that no matter how hard we try to provide her opportunity; it would be the recipients of our efforts that would make the impossible possible in her life.

Matt and I have struggled with how we will fulfill relationships in Ivey's life. I think I speak for any mom –with or without special need children - that we want our children to have friends, to be loved, to be liked and to be accepted. Sometimes the brutality of just how different Ivey's friendships might be is almost too much to bear. But that is where our friends and community step in and where Matt and I have proven to be very very blessed. As for the rest of this story, I truly believe that only other parents of special needs children can sincerely appreciate the blessings bestowed to our family and faithful people that happen to be part of our lives and especially Ivey's life.

This is the beginning of another amazing chapter in Ivey's life. The beginning of the rest of this story is below..............

My Wishes Gave Way to A Big Ole Slice Of Humble Pie

I am only one of many parents who have a child with special needs. I am sure I speak for all of us when I say I wish for my daughter to have friends. Even though she may learn differently, I wish for her to go to school. I wish for her to play. I wish that others will want to play with her. I wish to see her smile when her friend says her name. I wish that she would talk too much. I wish for her to make crafts. I wish for her to sing jingle- bells in the Christmas program. I wish for her to be part of a group. I wish for this to no longer be a wish, but a reality.

Going back to the beginning of the summer I began dreaming of a life that provided Ivey the opportunity to achieve all of the above. However, fear of denial and rejection loomed in the path. And of course, the brutal reality that Ivey's friendships with others will just be different. I found myself making prolonged excuses of why I should wait to set out on the road to Ivey's future.

Then this summer my path crossed with a very special person who saw the world vibrant and very much still spinning with Ivey and others like her as vital participants. She posed a very simple question, "Why not?" She also taught me to ask, "How can I make it happen?" Two very powerful questions in the dis-but very much- abled world. So after a little 'coaching' and feather fluffing, I was ready.

I introduce you to the beginning of a LOVE for humble pie.

My wish has been for Ivey to attend preschool just like her brothers. I have longed to see her shaking the daylights out of the jingle-bells while sitting on the stage during the Christmas program. I can literally hear the teachers saying good morning to her as she goes down the hallway to her classroom. So at the beginning of August I pulled together all the gumption I could muster, again asked myself the question "Why not?" and made the phone call. I scheduled to meet with the director of Knox and Walker's preschool.

Before I go on, I must explain why this was such a moving of mountains decision. The reality is this. Normally there can be hoops to jump through to accomplish such a task-school- Literally, heart ache. Quiet frankly, in most instances it is not the 'norm' for a child like Ivey to go to a 'normal' preschool. If you doubt that little fact, look around next time you sit in car line. There are horror stories about parents wanting the exact same things we want for Ivey. In a nutshell, gathering the courage to ask if my daughter can be a part of your group is the utmost humbling experience I can and will continue to endure.

Waiting to go into that office was unnerving. I really tried to go in with my game face on, to no avail, I still cried in the beginning. The proposal wasn't even the hardest part, it was the moment after asking…and this is where I must apologize….I regret ever allowing my mind to think that Ivey might never be privy to true childhood experiences like those of her brothers and that I apparently had such little faith in our village. We truly live among extra-ordinary individuals.

Thank you for the opportunity to give our little girl a true childhood experience. Thank you for being so caring at a momma's weakest moment. Thank you for taking such good care of all three of my children.

Last night as I was talking to a friend about Ivey's first day of preschool she just said 'well she's Ivey', like 'what other option was there?'. I could have squeezed her. If only my 'normal' friends with 'normal' children in 'normal' families could see, for just one day, the magnitude of their acceptance of Ivey in the eyes of other parents with special needs children. Our friends and community have conformed quite well to our 'new' normal. They made it their 'new' normal. They are all heroes.

Yesterday Ivey went to her first day of preschool. One of those "I Wishes" became reality. Another amazing milestone met. A little girl was granted opportunity. And it was the sweetest piece of humble pie ever.

The Sweetest Humble Pie Ever

Ivey fussing with Ms. Ashley

The fruits of humble pie

Refusing to have her picture made. Determined to get her hearing aid out. Two tasks accomplished. I forgot to rotate the picture. oops.

The R-Word

Retard is a HATE word.

It wasn't so funny after April 25th 2006.

Tropic Thunder. I don't know what you all have heard about this new movie, but what I have seen so far in the media makes my heart hurt. For all those who shrug their shoulders and don't think it is a big deal, take a moment and put the shoe on the other foot. We are here trying with all of our might to have Ivey included in this world with the least amount of stigmatism aside from the obvious that already exists....and then there are things like this.

Please take a moment to watch the video. I would really like to hear back from all of you. What do you think, all opinions?


Jill Egle
Co-Executive director of the Arc of Northern Virginia
Letter to Ben Stiller

Ivey, I am so blessed and happy to be 'stuck' with you. my angel.

Also, I have not seen the movie, so I will not jump out on a limb as of yet. I would have posted a video of someone speaking about those opposing the movie; however, all that I watched had explicit language. You can watch an opposing opinion to that of Jill's on youtube.

Battle won - War still Raging

That'll be Momma 1 : Ivey 0 (Just for today)

This little hat stayed on from 11:30 am until 8:00 pm. A record. Thus, hearing aids stayed on too. Oh how she tried at times to manuver out of it!

For sanity's sake, we have decided to tackle her hearing aids first. Then we will start over with her eyes. So for now, Ivey will not be wearing her eyes.

preschool

Two-fold objective for this post.

One, I sent out an email to several people today and if you happen to be one of them, this might give you a visual. See the sweet little bonnet that Ivey has on in the video below? That is the general idea that I am aiming for. It covers her ears and it ties snuggly under her chin. Note that we did go to the store today in her bright summer dress and sweet soft pink bonnet. Yet, the hearing aids stayed in the entire trip.

Right now the war of the wills is raging in our home. To date, Ivey is slightly ahead. Lucky for her, she did get my strong will-power. (Some might call it being down right stubborn or hard headed.) Right up until now her will-power has worked to her advantage. Not any more. She has met her match…..her momma. So, right now we are locked in the heat of battle. I want her hearing aids and eyes in. She does not. It is a vicious cycle right now. I keep jamming them back in –she in turn takes them right back out. To be honest, but don't tell Ivey, I am exhausted.

Second, I thought I would share on of our tricks of the trade. Velcro. It is a wonderful thing. The plastic container with her toys in it has Velcro on the bottom for me to attach it to her many trays. (There is a tray on her stander, corner chair, kid kart, etc.) I have also punched holes in the container and hooked climbing hooks to it so I could attach her toys and they will not fall completely from her tray. And, she can practice putting 'things' into a container.

Life with Ivey is all about thinking outside of the box.

Isn't she great at taking her chewy necklace on and off! Great job Ivey!

Velcro is our best friend

What's Important

What’s Really Important

Today was one of those really good days with no particular reason why. This post is just a small reminder to my self that it doesn't all have to be perfect or complete for it to be a good day.

I have been working on the schedule now that school will be back in session trying to work-in all of the requirements and those things expected. It is overwhelming already. This is to remind myself, when the schedule seems to take over, that this is what it's all about and there is no way to do it all – all of the time. We will get it all done at our own pace. Maybe not in some one else's time frame, but in our own, in the way that is best for everyone in our FAMILY. What is it they say…..slow and steady wins the race.

So if you look at the video you will see a multitude of things going on. It all depends on your perspective. Good things, okay things, some things that could be done better. Ivey's in her stander, playing with her mealtime utensils. Amazingly, her hearing aids are on her ears. Her eyes are not in; the trach stoma is not covered. Even though it is dinner time, I am not feeding her. It's only the feeding tube right now. But we are all content right now.

Tomorrow when the hustle and bustle starts up again I want to remind myself what's really important. She will be just fine even if we do not meet all the requirements of all the different agendas set for her. We will do the best we can and that will have to be enough. Take a deep breath and slow down…..slow and steady wins the race.

What's Important

Start Singing Again

With so many pictures and videos from the beach waiting for me to post and whales of stories to share, there is only one thing today.

For everyone who has loved her with us from the beginning and for all of you who have come to love her along the way, another magical day is amongst us-

We are so honored to have the ability to share our little ordinary miracle with you. So many of you include her in your prayers and there has not been a day that those prayers haven't been felt. Today some of those prayers have been answered and amplified. I only wish I could share with you the pure joy that today brought to my soul.

I thank God for the blessings he gives us, in His own time, not ours, so that we can truly be thankful. Amen.

IVEY NOW HAS HEARING AIDS!!!!!.

Now if only there were a way for her to hear all of you saying 'YEAH' as you read this….and as you can see and hear in the videos, we are working with sensory override most of the time around here.

Splash

Santa Rosa Beach