Just Another Ordinary Miracle

Time Divided...I need your thoughts

2012-02-14T21:51:00.001-05:00

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Dear Moms with Special Needs Children,
Do you feel like this is a/the reference to your life now? Do you have a great divide too? Will you please let me know how it has impacted you? (Spare no detail)

Dear Friends of Moms with Special Needs Children,
Do you feel like this is a/the reference to your friend's life? How has/did the moment of engaging in life with special needs effect you and your friend, together and individually?

Dear Friends of Moms with Special Needs Children,
Please give both positive and negative truths that you have observed or felt. (Spare no detail)

Dear Grandparents of Special Needs Children,
Do you feel there is a before and after too? How has it affected your family? How does it make you feel (about everything).

Dear Siblings of Special Needs Children,
Tell me everything.......you are the absolute most pivotal.

~Gwen

change me..

2012-02-14T21:36:00.004-05:00

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Surviving Has Side Effects

2012-01-27T14:45:00.003-05:00

That's the best I can think of .....surviving has side effects.

If we sat down and evaluated the days, nights, weeks, months and now years, we most definitely have survived. It makes me feel like running around like Gloria Gaynor singing "I Will Survive". (On occasion - I have.) And I surmise that looking in from the outside, we've done a fictitiously superb job ... of surviving.

But that's where things get a little gray and sketchy. We have survived, which dang sure impresses most people. If fact even I am impressed.  I look back on some days and wonder how in the world did we ever get through that.....yet here we are as proof.  We survived.

We, when in the company of our sweet girl, can appear somewhat intimidating. Seriously, how many moms do you know who can monitor a seizure, vent a g-tube, administer Diastat, manipulate a feeding pump, call a neurologists, orchestrate two elementary age boys and not let dinner burn all at the same time? Oh, and add in some instructive sign language on top of that. If I knew someone who could do the same things it would scare me to death.

Oh yeah... I actually DO know a couple of moms, awesome moms, that juggle similar things and more. They leave me in a trail of dust.

But, and this is a big .... BUT

Sit me down with two of my best friends.... in the whole entire world... at lunch on a Tuesday afternoon in Panera and you'll hear crickets chirping from around me. I got nothin'. Absolutely nothin'. I sit speechless, motionless and with no idea of what to say, how to act, or dare I say be "normal". Internally I feel like I just don't fit into normal life anymore. But hey, it's all part of surviving.  Merely a side effect. Right?

While we were building our fallout shelter in the past few years, so we could survive, we stock piled a lot of survival equipment. We schemed everything from the right medications, emergency plans, medical plans, school plans, therapeutic plans, intervention plans, play date plans, and organizing people to help us institute all of the above. We were seriously going to survive. We did our best to shelter family and friends in attempt to protect them from our secret compartment of pain and heartbreak; unfortunately, we collected a few human casualties in our attempts. But even those damaged while we were in survival mode have survived and we can never repent enough for the devastation that was inflicted. Thankfully they endured the side effects of us trying to survive. Nevertheless I am truly starting to question this surviving thing. Doesn't feel so rock starish any longer. Surviving is exhausting....mentally....physically.....and emotionally. Let's don't even talk about spiritually.

As for our children, well, the out come of their survival is still undetermined. They appear healthy and happy. Occasionally something will crop up that we suspect is a side effect of survival mode. But, I like to think that their fairytale still awaits and that our surviving has left them unharmed.

So when I tally everything up it seems that most everything and everyone has survived the side effects of us just trying to survive. The world still spins, which is always a plus. Woo hoo! We win a prize or something, don't we?

But not so fast, it seems that within all the attempts to survive - we left a couple of people out.

Two very important people.

Forgotten are the two people who made this all possible. The two people who fell in love, made a plan, and set out on a journey - together. I am sure it was never perfect, but what is? It felt perfect and they were happy. Even when the unexpected happened, they moved toward one another. Yet in the same instant, once they began surviving, they unknowingly began moving apart.

They had no other choice - at the time. Life required them to survive for the sake of themselves, their children, their family and their friends.

I'll be honest, very honest. Surviving is hard work. With a world turned upside down so quickly, it takes time to realize what direction you are facing. You may not even be facing the same direction. So you begin the excruciating task of turning the topsy turvy right side up. Within the confines of surviving, ultimately, we do what is natural for all humans to do. We let our natural instincts kick in and we either fight or we take flight, or we do a little of both. We do what ensures our own survival - we do this out of fear of failure.

And so the last two people on the list of survivors has tired of merely surviving.

One thing about these two survivors, they are just that.... They are warriors to the end. And so they have met the fork in the road of their journey. It is a place where decisions must be made and consequences must be faced... and these two survivors are tired of fighting alone. The spark that started this tale has been the one thing worthy of sacrife. No longer.

They have learned that surviving has side effects. Many side effects. They have learned that surviving asks a lot of a person and takes most of the person. Surviving is relentless. Sometimes it is more than what one person can do independently, so they are forced to compensate. Sheer determination grabs the reigns. Sometimes it is something that one person MUST do on their own, so they dig in. Other times it is just what God is asking of them at that particular moment in time, that's all. And in those times the side effects of surviving can be very positive. Other times, the side effects are down right miserable. Either way it is only temporary. Merely a season.

Surviving is not meant to be forever.

In the rubble those two survivors found each other. Tattered and bruised. A tad bit sleep deprived. But without a doubt, they will have many more days together.

And not just surviving.....thriving.....together.
That in itself is "a whole nother story". A great story. A new chapter.  Just Another Ordinary Miracle..........

Transparency

2012-01-20T20:10:00.000-05:00

2012-01-01T21:38:00.001-05:00

As he walked along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God's work might be revealed in him." john 9:1-3

And this is my resolution...to remember God graced my life with an Angel who was sent here to reveal his work and that the tribulation of this path is not only Her glory but His glory. And we (meaning ALL of us) were miraculously chosen to receive this grace-

-Gwen

2011-12-14T22:56:00.001-05:00

If you are looking for a cause to support this holiday season, a place to give, then please watch the Children's video. So much of this video is normal to us...not a new normal any longer, just normal, just ordinary. But without a doubt, this is also home to us, our family. So please support Children's this holiday season.Gwen/IveyWatch the video at this siteSHARE WITH CHILDREN'S

Bulldogs Black 2011

2011-11-25T17:14:00.001-05:00

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A Very Special Wedding

2011-11-17T12:02:00.005-05:00

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The seasons are winding down....

2011-11-17T11:56:00.001-05:00

R.A.C.E Rome Sprint Triathlon 2011 - Team Ivey

2011-10-10T01:25:00.001-04:00

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Pictures

2011-10-10T01:21:00.001-04:00

So many fun things have been going on in the past few weeks. So many memories made. So much to tell, but that'll have to wait. For now pictures will do. First, our Taylor got married. Apparently I have never sat down and written out this amazing miracle of Taylor in our live, although I've mentioned her a few times, but not often by name; nevertheless, she is back in Georgia (temporarily) and married. Second, Ivey completed her first sprint triathlon. Our friend Beth made that possible. That is also another amazing story, but for the moment, I can only post pictures. And they are all great pictures!

2011-10-02T07:09:00.001-04:00

I will strengthen you,
I will help you.
I will uphold you
With my victorious right hand.

Isaiah 41:10

-Gwen

Agape love

2011-09-15T05:57:00.001-04:00

The best of my Christian growth occurs in the mainstream of life, not in the quietness of my study.

-Gwen

Tad and Lily---- SOS

2011-09-12T17:49:00.002-04:00

Meet two of Ivey's most favorite toys on this Earth. The other is her music cube. Three toys of preference and the girl likes what she likes - that's it!!

However, we have had Tad and Lilyfor several years now and they are finally at their bittersweet end. She has killed them from playing them so much. I cannot find them ANYWHERE!!! So if you have these stashed in the attic somewhere - please send them our way!! Or if you magically run across them somewhere get them

and I will pay you back.

These are the small ones that can hang and you just push their little tummies to hear them.

It took a few years to teach Ivey how to find their tummies to play them all by herself. It took lots of work. Now I have tried every similar toy out there - she just ignores them or tosses them. So please help me find these sweet toys!!! They make her so happy.

Where is here exactly?

2011-09-09T21:09:00.001-04:00

It has all been so hard here lately, and on such a different level than the past. It's the parts of life that were neglected due to the demands of such a special needs child. What now? How do we bridge this? Marriage is so different. Somedays we dont even know how it should be. How after all this time have things gone so pear shaped? She's fine, but I feel so lost here lately. And, she falls on such a far sided spectrum of the special need scale. I find myself getting frustrated sometimes with parents with special needs children who can walk, talk -eat.. It's so lonely even amongst the special ones....

So my kindred spirit across the states has said what I've been searching for, in many ways. So if you are a special needs parent you might really want to read her post. I have several times. Little Wonders (just click)

What You're Willing To Give Up

2011-08-29T23:19:00.015-04:00

To be honest, things have been tough for the last few months. It's hard to explain just why even though I know exactly why. Life has come in the past five years and it's not through yet. And the roller coaster ride has ensued with tosses and turns- loops I never imagined. All angles of life are impacted. To be honest- it sucks.

But one thing I am slowly realizing- where I have been struggling to find my personal self in Ivey's world, beyond that of a primary caregiver to a very special needs child who consumes more time than most would be willing to sacrifice, amongst the life of my past I can't get back to, where I am constantly evaluating my position in comparison to someone else and their assumed successful life of assumed possibilities -that is merely available on appearances -for me a price has been paid in the earnings of giving up freedoms and personal time, hobbies and a career, sometimes there's not even enough air to breath. Most view that as a loss. Then they sit happily on the sidelines as the weights on a scale (salary, business, connections, invitations to social events, the number of phone calls received in a day) compounds. Looking out of the corner of their eyes to access if they are the one who has the most, who thinks they know the most, who has the most experience, the most expensive, and the friends that are the most impressive...making sure they are getting their backs patted and praised for all those things and looking down their noses if they don't think you have all those things - you are merely unsuccessful - not as successful as them.

Maybe the success in some one's life is NOT based on what we achieve- maybe, just maybe, life and it's successes is based on what we are willing to give up -

To promote another life - another life besides our own - at any and every hour of the day - knowing that the expense , the pay out, is loosing our own. Watching it happen in real time and letting it happen - willingly. And then actually loosing it - only to find talents beneath the subcutaneous layer that others can only dream about it a typical world. I've got that on my resume. But most never see that.

Maybe it's about working hard to merely let those prior plans and dreams - years of college, the beginnings of a "successful" career sink beneath the surface so that an other's time on this Earth is meaningful and FULL of absolute joy - that they are the benefactors, even though they will never know it. Despite the blood, sweat, absolute sleepless nights and tears that reign, I get up every morning to so that she is successful, others see her as success. I do it willingly, knowing the consequences. Maybe it's taking steps into an unknown and beating odds and statistics that were NEVER in your favor that makes life and real hard work meaningful- refusing to succumb to the the 'what should have beens'.

Maybe it is about sitting in the passenger seat and encouraging others with the credit for the successes, for a life that wasn't supposed to be. Again, willingly.

It's not success to meet personal promotion or personal gains and goals - no success, actually my friend, is having the courage to give all that up.

-Gwen

Special Olympics 2011

2011-08-15T14:01:00.001-04:00

Better late than never. Special Olympics was in the spring....

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Challenging the risks or is it risking the challenges?

2011-08-10T22:48:00.008-04:00

At the beginning of the summer I met someone who knew about Ivey but they had never met me. And like many others they have kept up with Ivey through this blog, even though they have never met Ivey in person either, she was someone who knew Ivey as a life force and a miracle in the present. Upon the meeting, this person quickly assessed me in the living flesh too. Where I am most noted as being "Ivey's" mother (in most introductions) there is apparently some expectation about who I am because she said,"You are nothing like I expected". As you can imagine, I am still trying to decipher that little comment. There are loose ends dangling everywhere off that one.

No matter the image hanging out there here's what I do know. I try to give her wings even when fear consumes me. My husband is exactly the same, which results in two boys having no fear when it comes to their sister. And I guess we do a pretty good job of pushing fear down in the right moments, all of which results in having friends who see no limits when they look at Ivey -

or then again maybe it has absolutely nothing to do with us at all- just a divine weaver weaving the right people into this child's life - inadvently and graciously into our life. Maybe it is really all of them teaching us to challenge the risks and risk her challenges, giving us the courage to give her wings.

She loves riding in boats, but this took her over the top. My girl loves things that go fast and toss her around like a ragdoll.

So here's to our friends - who challenge us to challenge the risks -

(I only wish you all could see the enormous smile on that child's beautiful face (and her daddy's)! P.S. the boys had a blast too! )

2011-08-08T22:51:00.001-04:00

Thursday, August 11th go to Dairy Queen for your favorite Blizzards to help support Children's Healthcare of Atlanta. Yummy!

-Gwen

To better explain our absence -

2011-06-22T16:24:00.000-04:00

things have picked up around, not that they were ever slow. I looked down and its practically the middle of summer, what happened to the time?

More to come soon I promise...as soon as I break these three up - she's getting the best of them!

Head on over to Dairy Queen...for Children's Health Care of Atlanta

2011-06-16T22:09:00.001-04:00

If you look closely you'll see their names, Knox, Walker and Ivey going down next to the black frame. You may not know it but we are there at least once every week. If we are not, then we make up the time within a few weeks and usually spend multiple days there. There being Scottish Rite, which is a part of Children's Health Care of Atlanta. It has somewhat eerily become a place of comfort for me. In those walls there is security unlike any other place. So stop counting the calories for a minute and go grab an ice cream and support this awesome cause!

Special Olympics

2011-05-17T21:46:00.003-04:00

Special Olympics
Computer's not cooperating...just click on the link to see our girl go!!

Thank you Smith Smarties, Deaton Darlings and Montgomery Magicians ... you all made this day EXTRA-SPECIAL!!

5 years in the make ..... so does that mean I have to do chores too?

2011-04-24T22:27:00.004-04:00

At 5:30 am on 4/25 our Ivey will be 5 years old.

A milestone.

So tonight I kissed her goodnight for the last time as a 4 year old. 5 seems so much older.

And it is.

And I am sure that tomorrow night there will be much to write about - we'll celebrate in true Ivey style. Tonight instead of rehashing the 4th year, I think I'll wait and enjoy the excitment of the promise of her 5th year.

In this moment I am in awe of my girl and all of her accomplishments. There are so many. Nevertheless, her birth day comes with many emotions. Many are our personal accomplishments and somehow surviving these 5 years with her and we know that we can face a challenge and keep on going. Sometimes we have felt broken, but we are always mended with something extra in the new weave. I don't think that will ever change. Her birth nitched a literal mark in our lives, a "before life" and a "life after". Now days it is almost impossible to remember life without her.

The boys have reached an age where toddler memories are fading and they too don't remember life before Ivey. They revel in the wake of Ivey's existance. They are made of something extra special. They exceed anything I could have ever dreamed for them. Not only does Ivey enrich their lives in ways still to be imagined - She complements their spirit. The boys are truely the center of her world. Personally I can't imagine what it must be like to know that another soul exists because me, but Ivey lives just for them. And now that they are a little older - 5 years into this life - well, they are understanding more. Just this week I got to witness firsthand the normalcy they crave amidst the deepest of love for their sister. Wise beyond their years. But, that is another story.

Despite their unbelievable moments ...

They are just brothers and a sister. The boys make sure that she is - well - just as typical as they are -- to them she is plain ole' Ivey.

So Friday it was made clear to me that it is unfair that the two boys of the house have to do chores and Ivey doesn't. This was explained to me in grave detail. Life just isn't fair...

(a plea for sibling equality)

So it was decided by the older brothers that it is high time Ivey start carrying her weight around here. And with no input on my part it was decided that Ivey should start hanging her shirts on hangers and hanging them in her closet and she should put her pants away in the drawer...and... she should also load the washer and dryer.

So......

Happy Birthday Baby Girl!!

Apparently your newness has worn off and you are one of the boys now -

Run Your Race

2011-04-07T19:24:00.006-04:00

Another birthday approaches. But it is not just a birthday, for our entire family it is an anniversary, the anniversary of new life. For the first time I have realized how coincidental it is that her birthday lands right in the middle of spring. It’s the perfect time for beginnings.

This past week we had her annual IEP for school. Without a doubt it is a miracle in itself that she is attending school. She made it there. But what strikes me hard is how perfectly things have worked out.

My girl maybe the luckiest girl in the state of Georgia.

Many would find that hard to imagine between the four injections of an antibiotic that stings like crazy in this past week, the IVig infusion today and the two CT scans planned for tomorrow, but really that is a sidebar for her. Still she has a lucky streak. The powers that be have decided that this girl of mine will be blessed. The people in place in her school are amazing. Our school experience, her school experience, is unlike most deafblind students in Georgia.

Blessed. Beyond. Imagination.

And this year as Ivey’s birthday fast approaches I can’t help but think of them. Over the past few years this race we have been running with Ivey has been hard. Now we have this team at school running this race with us. Teaching her.

Earlier this year I took the boys to watch the movie Secretariat. I cried pretty much the entire movie. Throughout the movie the words “Run you race” kept surfacing. I sat and would look at the boys and think "Just run boys, run". Stupid maybe. I like the philosophical stuff. But when I look at Ivey it seems so appropriate too.

Without knowing it, she is running her race.
Her race.
Not my race or your race, just her race.
Her pace.

Some of us get to sit in the stands and watch and cheer her on.

And then there are some of us who run with her -

She can’t hear the defining words of her appearance. She doesn’t notice the quizzical comments of strangers.

No.

She just runs.

It is her race.

She is running to win.

She started out of the gate late and slow.

But she is thundering ahead.

There is a finish line out there.

She sees it.

She feels it.

I’m running.

Matt is running.

Two brothers are side-by-side with her.

Ivey’s League is running.

And then there is this amazing group running with her, they love her, they want her to win….they want her to …. Run Her RACE….

This year for her fifth birthday all I can think is “Run your race baby girl, run your race”. You’ve been running it all along - with and without me. Just keep running.

We’ll be there cheering you on –
ALL of us.

Father Daughter Dance 2011 - delayed pictures...but she was the belle of the ball

2011-03-22T00:02:00.002-04:00

Turn up the radio....

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S is for seizure

2011-03-21T23:22:00.000-04:00

So....

the seizures are still with us. It is a month of them now - every single day. Not like Ivey. Uncontrolled intense seizures - yes, but not normally this frequent. Too frequent. Meds have been increased and antibiotics galore. Time to circle the wagons. This past weekend and our little "super moon" didn't help any.

Rethinking the "F" Word

2011-03-17T14:39:00.015-04:00

I am a little on the competitive side most of the time. Can't help it. It is just part of who I am. It can be a great asset or I can be my own worst enemy other times. Most often a good dose of competition pays off. When I look at Ivey - I see she might have gotten a little bit of that competitiveness - also when I look at her, especially on the hard days, I see she is a race to be won.

The downside to being competitive is failure. I hate to lose. Personally- there are alot of times when I look at Ivey and hear the defying words from Apollo 13 whispering in my ear, "Failure is not an option." I feel a battle raging.

Anyway - I read this article about a year ago and held onto it. I ran across it again the other day. Originally when I read the article, I didn't think about Ivey or her battles to be won and lost. Rather, I thought about our boys. They were playing sports - wanting to win. I thought alot about me sitting in the bleachers and how I should let up on my own competitiveness. Maybe a good dose of loosing might actually be the best thing over the long run-for them. Maybe not so much -Push, push, push...win, win, win. ...best, best, best...

This time after I read it I thought about life - obstacles- and how many times the boys will fail or fall short of what they want. How will they handle themselves, will they pick themselves up, dust off and go again with new knowledge, or will they see only barriers and stop? Knox's understanding, or not understanding, of his sister made all the difference this time. He is listening to those around him more and more, questioning everyone's views and opinions.

This is where Ivey comes in. I can't count the number of times in the last four years that we have been told the words "I am so sorry" - obviously - for having Ivey and her "issues". Some see her and they see failure. Particularly now, those who are unfamiliar with her, people in malls, the old woman in the grocery store, they see what was supposed to be a bundle of joy as a something that didn't quite end in the typical expected plans. Some might say Life failed us or see it as our failure, her failure - God's failure. She wasn't planned, not the course we thought we wanted or dreamed about - honestly we didn't know she was an option, and so for those who don't know her or us, she must be some symbol of failure.

Recently Knox asked me why someone apologized to me when they met Ivey.

That pretty much sums this up.

What do you say to him? People don't apologize when they meet him... How do I explain to him that he will have many obstacles placed in his life, some harder than others, some more permanent than others, and he will lose many times, he will fail. But in the end - he will be successful when he faces his challenges head-on with work and sweat - Or, how do you explain something so complex? How do I put into words that this life he is leading with his sister is a great success story and that our success may be seen by someone else as failure? But no matter what, we must stay our course despite how others view us and our life circumstances. This article resonated something familiar about our boys life - and how we will teach them to handle difficulty, dissappointment and failure. Most importantly - failure.

Hopefully we are on the right track and "rethinking the F word".

Rethinking the “F” Word

By Dane Peters

The other day, I selected a book from my bookshelf because I wanted to remind myself of the last time I read a selection from it to our elementary and middle school children. The book, The Grass Is Always Greener Over the Septic Tank (1976), is a collection of funny, yet meaningful stories about families, raising children, and life’s many challenges, written in a way only Erma Bombeck could write. The story I reread was “Ralph Corlis, The Coach Who Played to Lose.” It’s about a father who, after the death of his wife, moved to the suburbs to carve out a new life for his two sons and himself. The most meaningful part for me is when two Little League coaches confront Ralph demanding to know why he coaches his team to lose games. Ralph replies, “It’s hard to explain, but kids go all through their lives learning how to win, but no one ever teaches them how to lose. Just think about it. Most kids don’t know how to handle defeat. They fall apart. It’s important to know how to lose because you do a lot of it when you grow up. You have to have perspective – how to know what is important to lose and what isn’t important.”

My years of experience as a father, educator, and individual have taught me that, in fact, Ralph is right; failure motivates and forces us to get things right. And yet, we work so hard to protect our children from it. What originally drew my attention to the Bombeck story was my last letter to the parents at my school, which focused on the ‘f’ word. In it, I wrote, “One word that would most assuredly not appear on any list (that describes children) and is one of the most helpful character builders for children and adults is “failure”. Unfortunately, we shy away from using that word with children and each other, and yet, it is a word we have to live with our whole lives. For some, failure serves as a roadblock; for others, it is an obstacle to navigate around to a higher ground; and still for others, it provides inspiration to get it right.”

Imagine how life would be without trial-and-error. Sir Ken Robinson – an internationally recognized leader in the development of creativity, innovation, and human resources, and professor of education – expressed this concept and belief best during his lecture at the 2006 Technology, Entertainment, Design (TED) Conference when he said, “If you’re not prepared to be wrong, you’ll never come up with anything original.”

Robinson cites Dr. Maria Montessori in his lecture’s bibliography. Coincidentally, in Montessori Today , author Paula Polk Lillard states, it is psychological security, engendered in part by a properly structured environment, which gives children the impulse to try harder to face the unknown, including the unpleasant facts of life. The goal is to help children use their human energies to deal with the failures and disappointments of their lives and not be destroyed by them.”

Last fall, Howard Gardner spoke to the faculty and staff at my school about his theory of multiple intelligences. Rather than focusing on linguistic and quantitative reasoning – the two forms of intelligences most often valued in schools – Gardner posits that human intelligence also includes artistic, interpersonal, intrapersonal, and kinesthetic intelligences. By placing emphasis on this broad range of intelligences and abilities, he said, we can broaden the scope of how we assess ourselves and our children.

And, by opening up more avenues for approaching and solving problems, we can also help to diffuse our fear of failure. By trying and failing, or trying and succeeding, in the various forms of intelligence, we come to know our strengths and weaknesses and develp a strong, resilient sense of self. In his closing to those assembled, Gardner shared this quote from Ralph Waldo Emerson: “Character is more important than intellect.”

In the 2008 winter issue of this magazine, Carol Dweck’s article, “Brainology,” highlighted the value of trial –and-error in child development. Dweck researched the differences in children who have a fixed mindset about intelligence versus those who have a growth mindset. Children with a fixed mindset believe “that intelligence is fixed, that each person has a certain amount and that’s that” while children with a growth mindset “believe that intelligence is a potential that can be realized through learning. As a result, confronting challenges, profiting from mistakes, and persevering in the face of setbacks become ways of getting smarter.” Dweck cleverly tells us that even “Einstein wasn’t Einstein until he put in years of focused hard work.”

The ways in which our children approach challenges and overcome failure determine how successful they will become later on in life. It seems that Ralph Corlis had the right idea. We can’t really win in life if we don’t also learn to lose.

Knoxster

2011-03-10T06:29:00.007-05:00

Today is my oldest son’s birthday. Wow. Where does the time go? I think he is going to have an awesome day. I have to admit, another one of those things I would love to take credit for but have no bearings on, that he is one of the neatest people I know. Smart. Very first born. Very type A. Very rational. Very responsible. A compartmentalizer. Extremely focused. Unconditional loving heart - for everyone. Bound to accomplish what he sets his mind to. His daddy is a lot like that. But, he also has a level of compassion and realism that is sometimes perplexing to see in such a little body.

I have heard people say that having a sister like Ivey will make him more compassionate. That is possibly true I suppose. Just watching him with her would suggest that, but honestly I think he would treat her ‘special’ no matter – he just loves his ‘baby’ sister as he does his 'baby' brother. Compassionate, yes, but again, I don't think she gets the credit, that is just who he is.

A couple of weeks ago the boys went with me to take Ivey to ballet class. They were so excited. And as we sat in the waiting room I got to see, once again, a level of understanding from him that most adults struggle with. One mom there has four children with special needs, two of the girls were dancing, and two sons were waiting on their sisters too. One of the boys was in a wheelchair, a teenager, distorted speech, awkward body positioning – I spoke to the mom and introduced myself and the boys to her son. Knox never missed a beat – he didn’t appear hear or see the ‘differences’. My heart wanted to explode. Not for any other reason except he treated her son the way I want Ivey treated – I didn’t have to pull him to the side, explain, or persuade him – he is unique in that way. He sees people, not their problems.

Again, his life circumstances have warranted him an opportunity, but this is who he is, with or without Ivey. Life has only given him the opportunity to show the 'real' Knox more often than most.

Personally, I can’t wait to see what is in store for his life. Just as much as I believe Ivey was sent to this Earth to move mountains, so were her two brothers. This particular brother will move just as many, if not more.

At this moment if you were to ask him what he wants to be when he grows up he can already tell you, an engineer. But the kicker is to ask him why. And this he decided all on his own, again as parents we can take no credit, even Matt and I were both left speechless the first time he told us – seriously- this kid is amazing…..

Why? So he can make things that will help people like his sister.

"You're off to great places! Today is your day! Your mountain is waiting! So get on your way!" Dr. Seuss

The Un-teach-able

2011-03-08T21:32:00.003-05:00

There are alot of things that I would love to take credit for - alot. But when it comes down to it, I have absolutely no influence..... None. Notta.

Like this morning, Walker was up first (before Knox and Ivey) and came into Ivey's bedroom where Matt and I were (after changing of the guards with the nurse). Unfortunately it was time to get the day going. So Matt went one direction to get ready for work and I went the other to get uniforms out for school. In the meantime, Walker took Matt's place next to Ivey to keep her company while she slept and while I got the clothes.

This is what I came back to at 6:30 am this morning - Ivey still fast asleep with Walker sporadically reading what he could to her from the Lorax.
The photos I snuck before he realized it -

And this...Ivey's clothes out for the day - complements of Walker.

One black and white striped shirt.

One pair of polka-dotted pants.

One pair of socks.

Shoes.

Without fail- she wore this outfit to school.

She was sound asleep, but I hope his voice sent her sweet dreams. I hope she felt him near her and drifted into a deeper sleep full of security and comfort. I hope that these moments carry on throughout their lives together, always, that they forever remember these times. Both of them.

But without utter fail, these are qualities you just can't teach - I can't teach - these are qualities of the heart.

To tell you the truth - I don't know which one is having more fun, Lori or Ivey -

2011-03-06T20:11:00.003-05:00

When I look at pictures like this, I realize how little I talk about Ivey's League and exactly what and who they are. But part of me holds back from talking about them because their time with Ivey is just that, their time. For a brief moment when they are with her I am the outsider. Ivey is a very blessed little girl surrounded by a rainbow of people with a variety of personalities. She gets a real taste of life, real life from them. I sit as an outsider and see so many kids like Ivey secluded and even more often they may be involved but with limited access provided by parents alone. Not Ivey - she is surrounded.

The best way I have ever found to describe their role in her life is that - they give her something to live for. And on the flipside they are rewarded by unconditional love.

It is things like ballet that become possible for Ivey. And under normal circumstances it would be easy to say that something like ballet is an activity she "can't" do, but to the contrary they are proving that evidence wrong. Oh, it is challenging. Very challenging. They have to think outside of the box. They are learning the ways of this deafblind girl with extra challenges tacked onto her, but they see past those things. It is not easy. Honestly, nothing in Ivey's life is easy, but that is part of her beauty, she has a way of bringing out the best in us, by challenging us to BE OUR BEST. And best doesn't always mean the best, but really the best we can be in challenges and difficult situations, times we find ourselves uncomfortable or uncertain. She pulls the real 'us' out of ourselves. That is when she makes us shine. She is more often than not, intimidating - in a good way - she makes us question ourselves. And I am trying to do what is best by staying out of their way. They are brainstorming and thinking trying to figure out how exactly to include her. It is so hard sometimes. But that is the beauty. So many areas of Ivey's life need my utmost concentration and undivided attention. Not this one. They have her best interest at heart - and that is all that matters. They will figure it out.

In the end - the goal isn't for Ivey to do a dance, no, the GOAL is for Ivey to know she has someone to dance with - and that is ALL that will ever matter to me and Matt. That is our destination +

Day .... well I can't even keep up with it now.

2011-03-01T21:44:00.000-05:00

So the seizures are still with us. Just finished up the clean-up from her latest one - that was exactly 10 minutes ago. My mind is mush.

After a nice little seizure in carline yesterday morning, I was convinced that the two rounds of antibiotics just haven't done their job, and maybe the fact that two straight weeks of seizures is enough. Through wheel spinning between our pediatrician, neurologist and yours truly, we are taking this battle to the next level. For now she will be on a three day round of ativan to try and curtail the seizures. Tomorrow we will begin a month round of a stout antibiotic - and then we will re-evaluate, pending the seizures subside. If this doesn't work I am ready to admit her for IV antibiotics.

It is hard to imagine that something so simple as a sinus infection could inflict such havoc. But maybe this will give you a little insight as to why we avoid illness like it literally is the plague. Bigger things are extremely hard on her little body. But she is tough - not once does she even whine.

And due to all this 'stuff' and the fact that I have homework, yes homework - I have not gotten to the ballet pictures yet. Soon, very soon

Day 13

2011-02-27T22:25:00.000-05:00

Seizures are back....

Day 11

2011-02-26T08:41:00.002-05:00

Finally on Day 11 Ivey made it through an entire day without a seizure. Yippee!!

The past 11 days have been the extreme of extremes. We know she has sinusitus - agian. It is a monthly occurance and battle. Due to a debunk immune system and abnormal facial structure it is a 'normal' for her. These things send her spiraling -

I have to tell our medical staff how grateful we are for having them, and how thankful we are for trying to make the back and forth of communication simple and for trusting our judgement as much as we trust theirs. It has been over a week and a half of meds and sleepless nights and the eagle eye of monitoring for the slightest hiccup in her behavior to signal she just jumped to the next level- I think we can exhale today- she's back.

Despite a seizure marathon, Ivey has been at school each day, working hard - keeping us busy here at home trying to stand (see video below), making the most of ballet classes (pictures coming soon) and even sitting in the bleachers cheering on the girls Varsity basketball team(Go Tigers)! Extreme of the extreme. But I don't expect anything less from my girl with the mostest.

Determination

2011-02-24T22:51:00.001-05:00

Cognitively, Realistically, Joy-filled

2011-02-07T13:27:00.007-05:00

The past month or so has been a strange time. It seems that Ivey-lou-who bounced from the surgery last November straight into another chapter. I guess I would say that the ‘hallway’ wasn’t quite the hell that I was bracing for, not that I expected it to be too bad, just the unknown of what to expect. She has been happier somehow and with that she has found more confidence in her world. She has become a little more daring, trying her hand at a few new skills.

And here in momma-world the wave of ‘not doing enough for her’ is engulfing me. It’s completely like the ebb and flow of the tides. Sometimes feeling like we are just enough steps ahead, other times, feeling so behind. She surged in the past few months. She needs more. Medically she has leveled out it seems, for now, there are still a few loose ends, always will be, but medical is not its typical anymore and her cognitive skills are spiking. Cognitive. Wow. She needs more in-put, more signs, more hands-on time and more help to develop concepts.

Have we ever had this conversation before? Have we ever had a conversation about what’s inside that brain of hers – the stuff she can do and the potential waiting to burst out?

She is ready for the next step. Cognitively –

Two weekends ago I went to a workshop and got to sit and listen to a mom with two boys, both born deaf, talk about parents needing to submerge themselves into whatever it is that the ‘child’ needs. Her boys needed a family who could sign, communicate with them, and they went head first into the deaf world. She’s fluent now. I keep thinking back on her awesome presentation and wondering why I didn’t plunge into signing more – I sign ---limitedly, enough to get by with Ivey, but in the past month and a half, Ivey surged. Now I am holding her back. She has something to say, but not enough in her skill and concept bank to put it back out. I don’t want her world to be full of labeling and following commands. She is more than that. Don’t get me wrong, even if I did sign more – the process of teaching Ivey what the signs mean, tactically, is long and a somewhat hard path, she not only needs these random signs, she needs to develop the concepts behind them. But her ship is ready to leave the dock and momma better get on her boat – Ivey isn’t waiting.

Anyway, I did plunge into the deafblind world a couple of years ago and am pretty proficient, even if I say so myself. And deafblindness is not something that can be split into two categories, one being the blind side, the other being the deaf. No. It is SOOO much more than that – the word ‘deafblindness’ does not actually describe this tiny segment of the population proficiently. They have their own unique way of learning, much different than a blind person or a deaf person. So now it is time to plunge further into the ‘hard of hearing’ end of Ivey’s world and become a more aggressive signer, which means all of us residing under this roof will plunge in head-first. We sink and swim together. Still the guilt monster is gnawing away – but note to self, these past four years have been a rollercoaster of medical hell at times… especially on Ivey, she wasn’t ready –she is now. All in due time, right?

Like I said an interesting different kind of month or so have passed. The boys went with me and Ivey to the Ga PINES workshop. They got to go to their first Sibshop. To see their enthusiasm was amazing. They spent the entire day with kids just like them – somehow it empowered them. As much as I crave meeting and talking with other moms with children with special needs, the boys need that type of relationship too with other brothers and sisters. It’s funny how the bond is instantaneous, and very unique, very special.

And in the midst of all the good that is swirling around, there is always the reality of our world that keeps up anchored. Another means for guilt to creep in...things being too good....and it has been testing me as a mother, a mother who wants her daughter to have wings. I have been sitting watching another mom, dad, family, the siblings and two special little girls battle for life in this world. My heart hurts for them and selfishly my heart hurts for us, I know that at any moment we could slip right back into the sludge. It is a very weird emotion. I want to help, but don’t really know how. I feel I look at her with the same eyes that I have seen my own friends look at me - helpless. I know how bad the mom’s heart hurts and wish I could hurt for her for a few minutes just to give her heart a break. Thing is, I know her hurt, my hurt still sits down in the pit of my heart, and know I could take her hurt for a few moments, if it would give her a moment of peace, real peace, and a moment to not be rushed in the anxiety and be able to breathe or sleep for a second-the same things I have wished for so many times when uncertainty loomed. But I just listen to her words and have nothing that truly helps. And then this past week Ivey lost a classmate. Another blow of reality, way too close to home. Through this my first reactions were to not let Ivey out of sight, and try and harbor her. But that is selfish and unrealistic. Like I said, we are anchored by reality. We know where we are, where she is and still somehow she defies the odds. But all this makes me think about things that I have wished would go away, but know, are truths of this life. Time is precious, as is she. And who am I to keep her from the world, or the world from her. I want her to live life. It just all seems unfair sometimes.

And I hate that word, literally…"unfair". The boys say that sometimes, “It’s not fair.” I tell them nope, life’s not fair, get over it, move on.. but really when it comes to these little one who have to fight their whole lives just to have life, is that fair? When it is not a decision they get to make? As their parents, well, we’ll fight, we are pretty tough – we push through but why is their time on this earth so different? But I guess that is the difference, even though they are so little, their time is no more guaranteed than yours or mine. They just wear it out on their sleeves for everyone to see. They find more joy in their lives in a few short years than most adults who live out a full life. And even though physically their time is harder, spiritually they are full and from watching the world from Ivey’s point of view, she is surrounded only by people who love her, who cherish her, who do only good by her and she blesses everyone she meets because they know they just saw a miracle with their own two eyes. There are angels in every corner it seems. That- is a good life. And even though it is so hard sometimes on us, the bystanders, they bring untainted joy to our lives. Joy that we would have never known otherwise.
Okay enough of that...just please pray for peace for these families.

So that is the past month or so in a nutshell.

Realistically Joy-filled.

By the way – Ivey will begin her first ballet class this week…

2011-02-03T21:40:00.001-05:00

2010

2010-12-31T09:47:00.002-05:00

Create your own slideshow design

Merry Christmas

2010-12-26T08:41:00.000-05:00

Believe ~ in the spirit of Christmas.

sunlit

2010-12-13T19:54:00.001-05:00

Ava signing "Ivey"

2010-12-12T01:41:00.002-05:00

spinning

2010-12-12T01:40:00.001-05:00

The Aftermath -

2010-12-03T21:29:00.013-05:00

is never what we prepare for. This time she rebounded unlike any time in her past. All that's left are a couple of stitches that have yet to dissolve and what will be a scar that will forever remind us of things we are willing to sacrifice - things that are sacred.

Just this past week I ran into another mom in the bookstore, her son had 'The' scar. I'd never seen another person with 'The' scar before, or maybe I just never noticed until now. My oldest son saw him and was excited that this particular little champion had a trach. The amazing heart of my seven year old and the understanding that it encompasses always amazes and humbles me. I, on-the-otherhand, found myself doing the unimaginable -staring at her son - she noticed and tucked her little bird under her wing - literally out of harms way. How many times have I done the same thing? I should know better. That's when I shook myself back to reality and just said - 'We are going to have that scar'. And then I turned the stroller to face her.

Honestly - there we were, two moms with two - to be frank - physically deformed children, where just a few brief moments before another little girl in the book store - stopped - for several moments and quizzically stared at her son, and then shifted her gaze to my daughter. But together - standing there chatting - this mom and I were normal - if only to each other.

We stepped into a conversation that only two moms like us can have - both somewhat desperate - both relieved - feeling less self conscious - both clinging to the story that the other had to tell. A story that uses words like neurosurgeon and the medical jargon he enthralls, drain tubes, trachs, and seizures- IEP's, pulmonologists - cranial facial surgeons- without the recipient looking perplexed or sad. For us these are just ordinary terms for our ordinary lives.

And as for the other little boy - my son wasn't bothered by the raspy sound of his trach in need of suctioning or the deformities in his face- instead he talked to him like he was just any ordinary 5 year old, because to my son - her son was ordinary. He understands something that most adults can't imagine in their own lives. What I would give to truly know the outlook and understandings that he has of his sister's world..... a world that we call normal......

and only she knows.....as the perfect place...in the aftermath of life

McHenry handicap accessible playground - pictures

2010-11-20T07:48:00.004-05:00

November hasn't been completely surrounded by surgery. Not quite. Many of Ivey's supporters hopped online for a couple of weeks voting for her school to win a grant from Pepsi. And win they did, first out of hundreds. The playground was installed and due to Ivey's surgery being postponed for a week, she got to participate in the fantastic ribbon-cutting ceremony.

Our entire community came together for this project and then they went out and recruited from other states and countries. Mrs. Pryor was the engine behind the entire project and everyone owes her their thanks for seeing a need at the school and taking her own action on it.

Personnally we would like to thank Knox and Walker's school, the entire campus from seniors to pre-k, for getting behind the playground. I want to thank the Lower School for supporting Knox and Walker. Thank you to the Upper/Middle School for keeping information up on the school's webpage.

The school's mission statement says this: To empower students to learn with passion, act with integrity, and serve with respect. They have served McHenry and with respect. The students have experienced a world that they don't see everyday in their hallways. They embraced Ivey along with Knox and Walker as part of their school. She has a home at two schools.

You see under normal circumstances Ivey would not be at McHenry. She would be in the same carpool line sitting waiting on me to pick her up along side her brothers. God had other plans for Ivey, but magically their worlds are bridging together. Some of the students and families realized they were not just helping a nearby school, they were helping one of their own families; they were helping Ivey. It gave the drive for the playground even more meaning, it became personal.

Thank you to everyone who casted a vote and made this playground a possibility -

Knox, Ivey, Ms. Charlotte (Ivey's para) and Walker

Mrs. Pryor

Mrs. Cunningham (Our principal)

Ivey

Darlington Students

Our hero

swing for someone wheelchair bound

Looks like we have a little growing to do

Thank you everyone!

Scars

2010-11-14T22:53:00.006-05:00

It astonishes me what amazing things Ivey's little body endures on a daily basis, let alone what she triumphs over on a grander scheme. Sometimes sitting in the doctors' offices I have to look at her body to remember all of the procedures, medications and trauma that are filed away in each and every scar on her sweet little body. Locked away in those scars that she physically carries are memories that only her daddy and I can recount on a very sacred level. They hold treasures that are culminating two boys - her brothers. Not many people understand the true beauty of her scars. No matter, that's what they are ..... beautiful.

It takes a very strong person with a deep since of self to carry such scars. And she smiles as she tells her story about each and every one, without ever uttering a word.

True Beauty is this...

Monday night before the surgery we took a 'few' pictures of Ivey and the boys. Pre-surgery pictures ..

Walker 'signing' his name sign to Ivey.

Knox 'signing' his name sign to her.

Sunday's post-surgery pictures. Same beautiful smile.

A little game of 'Indian'.

And the forever game of peek-a-boo.

BEAUTIFUL

She is still swollen and bruised. Improving each day. The stitches will dissolve in a couple of weeks. The spot behind the stitches on her right side is where the drain tube was in place. Officially the neurosurgeon removed three pieces of skull bone. The cranial facial surgeon secured the skull with plastic plates. Once the swelling and bruising is completely subsided, Ivey's head circumference will literally be centimeters larger, plenty of room for more brain growth. She is doing great and re-cooping so well. And as always, she is beautiful - with one more beauty mark - to tell her tale about just another ordinary miracle.

Saturday - Game day battle....

2010-11-13T17:49:00.003-05:00

Ivey was discharged yesterday! She had a great night, Mrs. Stephanie was here --- so we all had sleep.

She looks much, much better today. The swelling has gone down a little and she is in a GREAT mood. Tylenol is holding her, which amazes me.

The boys came home this morning and seemed pretty non-phased by Ivey and her swollen and bruised appearance. A good thing, I think. Sometimes it takes them a little time. I did take them for some hot-chocolate and they voiced a few questions, mainly concerning the incision and stitches... and went on their way. And now they are getting down to business with the Georgia - Auburn game.

Settling down from an emotional roller coaster is always hard - but we do it- together .....we are truly blessed by wonderful family and friends. One of those friends gave the blood that went to Ivey during her transfusion during the surgery.....And now Ivey now has some Auburn blood flowing through her veins. Literally. So I wonder if that blood is urging her to let out a little 'war eagle'?

Of course NOT, what was I thinking..... blood is RED....

Go DAWGS!!

Thurday

2010-11-11T15:45:00.000-05:00

Still in the PICU today - but it sounds like we will be moving out onto the floor soon. Ivey had a really rough night. Her morphine was bumped to every hour and still she was hurting and restless. She would doze for fewer than ten minutes at a time. The swelling has increased immensely and the bandages have been removed. It is hard to imagine how she will look once the swelling subsides. They prepared us best they could for her appearance and honestly I thought I had this under control. After all, she was swollen after the trach once upon a time - and I honestly thought that had subsided the shock value of seeing her sweet face swollen. This is much different.

Nonetheless, she is doing well today. Pain has been better. And she made it through a surgery that as the neurosurgeon said 'will not be a cakewalk for Ivey'. She did it. And we can exhale - a little - for now.

Q-Tip Turban

2010-11-10T07:58:00.001-05:00

(We were told when she came out of recovery that she would look like she had a Q-Tip on her head...)

Ivey had a semi-restful night. We kept the pain medication pumping every two hours. Around 4 am the swelling started setting in - there will be alot of swelling for many days. We still have not seen her incision -

Last night she was a little upset and signed "Ivey" and I signed back "Momma's beautiful girl" and she settled. She settles to Matt's kisses. During the night she even instigated a game of 'patty-cake' and played with her music cube. Ivey's music cube is the equivalent to Walker's bear blankie - it's her snuggie.

She is resting now - I'll update everyone today as I find out more from the surgeons after their rounds.
The next several days are going to filled with pain and confusion for Ivey - so keep her in your prayers.

She is a trouper - we have seen that throughout her years; however, we have a new little tidbit of information about her ... the neurosurgeon said her skull was very thick, more like that of an adults. I've always thought she was hard headed - I guess now we know she really is -

Two hours in -

2010-11-09T10:50:00.000-05:00

Ivey has been back in the operating room for about an hour. The pacu nurse has called and said Ivey went under just fine and that the neurosurgeon has completed his portion of the surgery.

The nurse will call every hour and keep us updated.

That girl of ours is a trouper. More strength in her little finger than in Matt and I combined - guess somewhere in there she got the best of both of us. Plus the touch of angel's wings.

Well.....change that....Dr. Reisner just left the room. He has finished his portion of the surgery and cranial facial is working on her now. Things are going very well. She did get the blood transfusion at the beginning of the surgery. one down - one to go - i'll update you soon.
Gwen

rushed.

2010-11-08T09:53:00.000-05:00

Well we have made to today. And I hope before today is complete there will be some great pictures of McHenry's ribbon cutting for the handicap playground. But if time runs out - I'll get them up soon. Much to do today. But if I don't make it back here - remember tomorrow is surgery day for Ivey. A big day.

The broken curse

2010-11-01T22:40:00.005-04:00

The curse is broken.

Each October since 2006 the Sirmans' house has been under a fog of non-fun Halloween events resulting in Ivey at Scottish Rite or in full seizure --- But the house has finally slammed down on the wicked witch and severed her legs...and the curse is broken here on the other side of the rainbow.

Finally. Exhale.

It only took 4 ½ years……….

The first year she was many miles away in Atlanta with a new tube in her throat – boys here.

The second year she pulled out her mic-key button- again landing us many miles away in Atlanta-boys here.

The third year she was home with seizures – boys trick or treating with Ava.

The fourth year she was the cutest kitty cat in the neighborhood (along with Ava) with a guardian ninja and football player to protect her and a bunch of friends surrounding her – with a bag full of candy that won’t quite fit in that tube of hers…..lucky she has brothers….or is it the boys that are lucky? Either way we have a boat load of candy…that mommy has to taste first to make sure it’s not poisonous.

So tomorrow we begin the first leg of her next journey. We will venture to a pulmonology appointment for a clearance letter then jet on over to Pre-op. Gearing for next week officially begins. Next Tuesday Ivey will go in for a little cranial expansion. But thank your lucky stars, her brain has grown. A miracle.

there's something about Daddies with pumpkins with pink bows and fairy wands....

Now if I can find the courage to be that superhero of my own childhood, revel the same strength and conquer the world.

Goldilocks Goes Pixie -

2010-10-19T23:16:00.000-04:00

Then....

True Peace. Just throwing this adorable picture in because it is so sweet.

Now.....

Cute new pixie cut with great hair accessory.....

She was grinning from ear to ear in these pictures.

Hair pulling 101

2010-10-18T22:48:00.001-04:00

Last week Jennifer took Ivey on a stroll around the neighborhood, which she obviously enjoyed - If you notice, Ivey is wearing her cute Hannah Andersen cap. Originally we bought these to try to help keep Ivey's hearing aids in - they failed. However she is now wearing them again, or at least she was until 2:00 pm today.

We'll get to that in a minute.

Two weeks ago Miss Ivey decided that she enjoyed pulling her curly blond locks clear out of her head. And within minutes it seemed, the right side of Ivey's sweet head was missing quite a few curls. Literally - a moment without the hats, even in sleep, ended with a curl missing from her noggin and wrapped around her little finger. It's a sensory thing. We know it. Do our best to address her sensory integration issues, but really there aren't enough hours in the day or extra-hands available to do the sensory diet she probably needs. It would be unrealistic in this real world we live in -

And so Mrs. Mandy came to the rescue and this afternoon did the unimaginable and....with a snip here... and a snip there...Ivey's curly locks were gone. Gone....

She can no longer pull her hair and that is the goal.

Somehow I made it through her haircut without crying - It took alot of pep talks through out the day - reminding myself why it had to be done.

I think we will call her new style a pixie cut - one that will hold a bow.

Tomorrow I'll get you a picture of her new do. But maybe this will make things a little easier for the surgery too...who knows.

Touch the Top of the World

2010-10-15T10:53:00.006-04:00

Over the course of the past few years a special group who calls themselves the Blanket Ministry has made blankets, delivered them to me via one of Ivey’s fairy Godmothers to be passed on to special people who can give them to children, like Ivey, learning to make their way a dark world. The blankets provide security. They are very special blankets. Not only are they special to the children, they are special to everyone who touches them in the process of passing them on the children.

I was rummaging through the bag counting the blankets, while on the phone arranging the last leg of their journey, when at the bottom of the bag was a book that I had lent Ivey’s Godmother awhile back– and I couldn’t help but catch my breath at the memory of the book. It almost startled me. It reminded me of a time, like many other memories, when we shook our heads in acceptance that this path with Ivey was set even before she was conceived. We just didn’t know it. And even though it is just a book that I could easily go pick up at any bookstore, this particular one is special.

We surrendered talking about the details of the days Ivey and I were both in the hospital immediately following her birth. Sure every now and then Matt and I talk about them, but not really ever do we talk about them with other people. It was a very emotional time, hard on everyone, a lot I don’t remember, and it takes us back to a place we rather leave where it belongs – the past. She is not the same person she was then, and neither are we. But there are a few rare memories that I do have – two are of Knox’s Godfathers –those are Matt’s stories-but in the days following Ivey’s birth they played an important role.

And I realized after seeing that book again, which I thought was tucked away in a box with Ivey’s baby things, that I spend a lot of time talking about all the women in Ivey’s life, but rarely do I mention some of the men who are just as supportive – and who are very involved in our lives, her life, the boys lives and especially Matt’s life – that keep this ship of new normal’s afloat. Seeing the book reminded me of that.

A couple of years before Ivey was born, one of those Godfathers came over to our house one day to visit and brought a book that he had read, and he gave it to me. Once he mentioned that he still doesn’t know what made him or why he gave the book to me that day - not Matt, or anyone for that matter. It was out of character for him. Maybe it was one of the first steps toward preparing – mentally- for Ivey. I file it as one of our God Moments.

Also, for the past couple of weeks we have been in the process of gearing, somewhat bracing, for the surgery that is coming at the beginning of November. In doing so, Matt and I along with a handful of friends are giving blood to build a blood bank for Ivey. Just thinking that she might have blood from a friend, another one of those strong men in Ivey's life who is close to Matt, who loves Ivey dearly, who is full of Faith and strength, pumping through her veins gives us comfort. It is almost impossible to explain. I think that blood will be her blanket during surgery - when we can't physically be with her.

A New Post..

2010-09-27T22:53:00.001-04:00

So my laptop crashed -- along with the rest of my brain --

Have you ever noticed that right when you think you've got it figured out, BAM, reality hits you right in the gut knocking the wind out of you. So for the last couple of weeks that where I've been - breathing into a brown paper bag.

Here is where we are.

At the beginning of November Ivey will go in for surgery. If you have checked in over the past few months you will understand why - back in February Ivey spent a stint in the hospital. During that time she was referred to a neurosurgeon. And since then he has been monitoring the prematurely closed sutures of her skull. Two weeks ago he performed a lumbar puncture to monitor the amount of pressure possibly being applied to the brain due to the suture closure. He had expected a low opening pressure; however, it was very high. This high pressure signifies that Ivey's little brain has grown, which was unexpected, and is very good news. The bad news, Ivey will have to undergo major surgery to release the closed sutures.

The surgery will be performed by Ivey's neurosurgeon and her cranial facial surgeon. The neurosurgeon will remove 2 to 3 pieces of Ivey's skull and cranial facial will piece her skull back together. It will be a tough surgery for Ivey, but she is a fighter. If you have any questions just let me know and I will get back to you.

G.

Here- Rascal Flatts

2010-09-16T18:57:00.003-04:00

Maybe every song is not meant to be the proverbial love song - sometimes maybe they can be a little more - maybe it is about us, a boy and a girl, and maybe it's about them, our boys and girl --- or maybe it's about us and what the four of us would go through for our one little girl. It is amazing. And each and every smile and tear - we would do over and over again - and again. Never changing one thing...because that's what got our family, the five of us, Here.

Here not there.

2010-09-10T19:24:00.001-04:00

Have you ever wanted to be anywhere but here? Just be there? That place where things are easier – that place where decisions come fast – that place where answers aren't found at the end of riddles – that place where I have yet to be.

And honestly I am tired of the clichés' about things not always being easy and diamonds in the rough or not being given more than I can handle. Some days I am just not there. Instead I am here.

Here in a beautiful home with beautiful children and a beautiful husband. Yes I know all the great things I have been given.

I don't want to be there again next week. Another procedure. Another issue to 'deal' with. Another reason for her to hurt. Another reason to be a part-time mom to the boys. I want to be here instead.

I don't want to hear another person say 'I don't know how you do it." I don't want to hear another person say, "Well, I guess you are used to this by now." I don't want to hear another person say, "You should be happy of what you have been given, and move forward", as if I am not. I don't want to hear another person say, "I couldn't do what you do." I am tired of feeling like I need to appear to be afloat – not having the bad day – and when I do getting the reasons why I should be thankful. It's just too much contradiction too much judging on a lifestyle that only this selected handful gets to live. No. I don't want to be there anymore. I'll admit it – I'm weak.

I want to be here. I am tired of being There countless minutes out of each and every day scheduling, finding out, hearing more reasons to be there.

I want to be there – where God says you all are serving your purpose well – so I will give this one day to rest. Step away and just be.

I don't want to feel guilty for fearing or accepting her future anymore – just because others fear pain or death. Because others don't like to see a world without rose colored glasses. Or better yet – all is black or white. All that is there. Here, we live in the gray area where happiness coincides with sadness, joy meets pain, and smiles are always shared with tears.

This week I wanted to be there – where my little girl smiles when she sees me, can say 'I love you', can walk to me – Instead I am here. And I do like it here, but still miss there - even though I have never even been there, not one step. And I don't want to hear how I should learn to love other things – the joys of progress in her world. Because without a doubt I love every minute of it, but why is it so hard for everyone else to understand – that I can miss those things too. Some days are harder than others. The rest of the world complains when the kid next door made the A instead of their kid, or when their child wasn't invited to 'the' party, or when their child isn't the 'most' athletic or popular or picked by the teacher…all so petty, what's so wrong with me missing something so minimal as her saying my name – momma? What's wrong with wanting that?

I just want a moment with my girl that doesn't involve or revolve around anything medical – I want a moment with my boys to be their mom, just their mom – I want a moment with my husband to talk about our marriage, not medical issues – is that really too much to ask, to be there – not here?

RN-T.com - McHenry wins 25 000 grant for playground thanks to community support

2010-09-01T05:54:00.000-04:00

It truly does take a village to raise a child.

Congratulations to everyone at McHenry. And we all must thank Ms. Penny Pryor for recongnizing that all the children should play on the playground - so she set out to write the proposal to Pepsi to make a difference in some very special children's lives. Thank you to everyone in our community who voted and helped to spread the word and make this a possibility for McHenry....by taking it all the way to the top!

I can't wait to post pictures of Ivey playing on the new playground.
RN-T.com - McHenry wins 25 000 grant for playground thanks to community support

McHenry Primary Handicap Accessible Playground

2010-08-31T09:31:00.001-04:00

This is it! The last day to vote for Ivey's school, McHenry Primary, in its request to win a $25,000 grant from Pepsi for a handicapped accessible playground.

Click here to watch Ivey and a few of her classmates playing on the current non-accessible playground:

Currently McHenry is in the number one position for the grant. Thanks to all of you who have voted for McHenry. You are making a difference in the lives of many special needs children and for future children that will play on the new playground. Your vote really does make a difference!

www.refresheverything.com/mchenryprimary

Then text in your vote to Pepsi by entering in the numbers 73774 and then text 101235

RN-T.com - Darlington student McHenry playground can benefit everyone

2010-08-26T00:14:00.003-04:00

Click here to read: RN-T.com - Darlington student McHenry playground can benefit everyone

We truly live in an amazing community.

www.refresheverything.com/mchenryprimary

text '101235' to Pepsi at 73774

Everyday through August 31st.

Taylor

2010-08-18T10:48:00.023-04:00

This marks my fourth attempt at this post. For some reason I just can't culminate the words to precisely depict a brief moment in time and give you another glimpse at one small miracle in Ivey's life. Unfortunately- that's all you get – a flash. And here on the inside that is all it really feels like too – a flash – a brief moment of time that went by too fast.

Tomorrow marks a big day for someone who has become a very special part of our family. She'll take to the road and travel many miles for the next year to pursue her future.
It's funny how so many small moments, brief encounters; choices we make that end up as mile markers in our lives – they shape us – make us more than we were.

And without fail, most of those markers end in change.

Two years ago we were asked by our local parent-to-parent organization to volunteer, with other families, to join with a class of students at a local college and allow those students to go into our children's school and to come into our homes – to see what it is like beyond a textbook. So I filled out the necessary paperwork, sent in pictures, all of Ivey, for the students to look over and choose a child. And that was that – a simple task once again would change our lives – forever.

My hopes were to have a sweet person spend some time with Ivey both in school and our home…..and with any luck get someone good who might do a little babysitting on the side.

What we got wasn't even on our radar.

Needless to say her time spent with our family over the last two years left fingerprints all over our hearts.

It wasn't just her influence on Ivey – somewhere in there – Ivey influenced her. Made a mark on her heart too. Ivey set her on a course that will mold her entire future – a career choice. And at 10:30 one Saturday night, she sent us spinning. And tomorrow, no matter where she lands in her future, she will start the journey that we could only dream about.

Her life is about to change.

But I hope she will one day see how much she changed us. What she gave us.

Unexpectedly – I got another moment – just a tiny glimpse – of another life. What I will never have. A different me. I didn't even see it coming. And so I must first thank her mom for sharing her daughter with us. Her mom gave me the greatest gift; she shared her own daughter with me for a brief flash of time, just one summer. Her mom gave me the tiniest glimpse of normalcy that I will never have again. Normal Life with a daughter. The chance to worry if she was okay. Wonder what time or when she would be home. Meeting the boyfriend. Girl talk. And the hardest part, the heartbreak of watching her leave. All things that should naturally happen over time, played out in one summer and I will forever be grateful.

Down the road when my friends begin to worry about boyfriends and dates. Driving. Which college. Their daughters leaving home. So many things. I will have this one summer to keep me sane – to remember.

And if things were different and I had all those things to worry about – and had to try to raise my daughter to make the right choices, I could only pray that she would become just like Taylor.

You did a magnificent job.

Whatever it is you did, you did it right. She is an amazing person. Just like my daughter, she is special. I can only dream of the people she will touch in her lifetime. The difference she will make. Already Ivey has been blessed. And I can't imagine how your heart is breaking just thinking about tomorrow. But thank you for giving her this opportunity – for me – she will make all the difference in my daughter's life. She will teach others how to give her Life.

Just Another Ordinary Miracle – is in the making.

Thank you for sharing your miracle with my miracle +

Hmm. This is weird.

2010-08-09T22:34:00.006-04:00

This morning Ivey skipped (figuratively) off to her first day of school.

It was so exciting. We got up. Switched gears with the nurse. Gave meds. Packed her book bag. Packed feeding supplies. Got frilly in a new dress picked out by her brothers. Loaded up the car and off we went.

This is going to be a great year. Ivey has an awesome 'TEAM'.

Right as we were heading out the door Knox asked if I thought the teacher would let him read a book to the class. This was going to be interesting morning. So I said we'll ask - grab a book.

Hmm. I am positive his little mind envisioned his Pre-K classroom sitting in a circle eyes locked on him as he enthralled them with a story. He wanted to read from a chapter book. Deep breath. His world was about to widen - have more depth - define his character - develop understanding of another type of classroom.

And after a little discussion - He brought back the Ten Little Ladybugs ..... our brailled edition - and you can actually feel each individual ladybug.

He was so excited to meet Ivey's new friends. Thank you Beth. Watching him read was the best part of the morning.

But the other best part of the morning - watching Ivey grin (do you see that grin?!) as she heard Ms. Charlotte's voice.

And I think she was utterly exhausted and happy to be home with her brothers at the end of the day. Ms. Charlotte said she signed for them all day. Sweet brothers and sister. They are special. (The thumb did come out of her mouth during the day - just not the first thing this morning or once she was tired out, oh well.)

So next week all three birds will be back in school - Ivey is schedule to attend every day - very weird, very weird.

Don't forget to vote for McHenry's playground EVERYDAY for the remainder of August!!! See button in sidebar to vote. We need this playground.

Staring with Style

2010-08-04T15:05:00.008-04:00

For tips in Staring with Style scroll down to the italicized section (if you want to skip my ramblings)…. J

Stares come in several shades and on a typical day staring is just part of our normal. And I guess somewhere along the way I did learn to ignore it in most circumstances. Ivey is intriguing. However, the physical features of Ivey that I see as beautiful and subtle reminders of her strength – others see as oddities and markers of weakness. It didn't take long to recognize that Ivey draws attention to herself whenever we are in public. And 99.999% of the time I'm am okay with the stares. I'll admit it still stings a little. But the stinging is now a comfortably numb feeling. It is part of who I am – they stare because of who she is and she is half me.

I have thought about this for the past couple of days – and I have decided that there are just too many types of stares and not enough words to explain how they can make a parent feel on the inside, no matter how well intended the stare is. However I distinctly remember the day that Matt and I decided there had to be a plan – a configuration of words – to explain our daughter to the public. This was our day- the exact moment we knew we needed a plan: click here to read. Our attitude would mold everyone else. Our posture, how we hold our eyes, if we can smile. All of those things make us approachable – Ivey a person – not an object to stare at. Don't forget – we live in a society that bases everything on outward appearance – first impressions – I can only imagine what others conclude from Ivey's physical features.

So aside from the little glimpse of me being frustrated at a newspaper column – here in daily life – stares are handled much much differently. They are encouraged and accepted as long as they are in good faith. For the record, I LOVE it when someone does walk up to us to speak – ask questions, especially children, they are her peers.

It is easy to label stares into two columns – good stares and bad stares. I distinctly know the 'good' from the 'bad'. However, there is a third stare, but we'll talk about that later.

The good stares we encourage. It gives me a door to introduce Ivey to a new person. And I do that almost daily with every chance I get. I want people to know Ivey and how wonderful she is. I want to teach others to describe her scars and differences as unique attributes rather than deformities.

I want people to see her as the miracle – not a tragedy.

The bad stares I normally ignore. But I don't agree that it is okay that people are merely curious and that somehow condenses a discourteous behavior. What you might not consider because most people can't picture themselves doing this, is the facial expression that extends from the stare, and what it says; the look that says she is grotesque, ugly, weird –some days it becomes too much. The worst part though is how the person chooses to finally look away. Yes, this really does happen. And much to my humanness – some days enough is enough. I have learned the best medicine is simply to stare back.

Ivey never escapes this – ever, the good or the bad. And maybe the real issue doesn't involve Ivey directly at all, she is unaware (or so it seems). Maybe the real issue lies with those who surround her, who love her and all of us who endure these stares with her, knowingly – every day – day in – day out.

I did tell you there is a third stare.

It seems to be the exception to all rules – admittedly even I do this. It is a relief to meet this gaze on the hard days. The 'me too' stare. I have yet to meet a parent of a special needs child/even the parents whose children are now adults, that don't have this look. It's a look that comes only from experience. It is a look of Empathy. No remorse, pity, sorrow, sadness, confusion or curiosity extends from it. – Only admiration for the other child -

The article was something that got my goat following a couple of sleepless nights in a hospital, more talk with doctors about things awry with my girl, the confirmation of another surgery, things that never make print here on this blog. So I guess you got to see me take out some frustration on an unsuspecting article with an author who has no idea she became my punching bag. I guess I saw the mom reaching out for advice and – I saw myself in this mom – just wanting someone to take the reins for once and tell her what to do– to not have to think through a difficult moment anymore - there are so many other pressing issues that need attention.

Now I don't think I would personally ask Dear Abby, but maybe the mom had no one else. And the best DA could do was to tell her to ignore the insensitive (not the good) stares. She needed more. Obviously, Dear Abby hasn't hung out in a mall or on a playground with a child who looks 'different'. It will make the most confident people doubt themselves at times – you feel subconscious – you want to distract – deflect. And then you feel guilty and weak for being bothered at the way someone looks at you. Silly I suppose.

But for all those times, the good happens more often –

Last year I went to the boys' school to eat lunch with them only to notice a student staring intently at Ivey. I ignored it….and then watched in silent admiration as another student who knows Ivey, get up and walk over to the girl staring and start explaining that Ivey couldn't see her; she would have to speak to Ivey and touch her on the arm to let her know she was there. I never said a word, nor let on that I noticed – it wasn't my moment. But it was an extraordinary moment on so many levels. Ivey is loved by so many.
Those two girls went on to play with Ivey for the remainder of lunch....

(Of course I called the mom to let her know how courageous her daughter was in front of her peers in the school cafeteria.)

Well, that's only a glimmer into a small part of Ivey's life and how not all days are easy - no matter how much time passes - some things still are hard to ignore.

So here it is... a little do/don't do list if you were wondering what to do -

Staring with Style Don't's:

So yes, if you feel the overwhelming desire to stare, please stare with some style. A little splash of class would be nice too. Look in the mirror tonight and practice your 'I am going to look at special needs person' stare. Make sure not to pull your eyebrows too high, and don't squish them together too much either. Don't stand with your mouth open. Don't point. And for heaven's sake, don't have the "that's gross" look (our people tend to drool, make strange sounds, have tubes going all over the place, in Ivey's case you are apt to see her remove her prosthetic eyes and hearing aids, or lately she has learned to disconnect her feeding from the extension, etc). Once you look – never try to casually pretend our special people don't exist – they do.

Above all remember the Golden Rule – love thy neighbor as thy love thyself!!

And if that doesn't work remember what your momma said, "Treat others like you want to be treated"! J

Staring with Style Do's:

Speak to people with special needs just like you would anyone else. Find something around them or what they are wearing to comment on – give them a compliment. Smile!! Ivey hears your smile in your voice! Look them in the eye. God knew what he was doing when he blessed Ivey with a head full of curly blond hair. Tell her how pretty her hair is….and the best thing about those curls…. People are lured to touch those curls (Purell your hands) …go ahead fluff her curls. But if you really want to talk to Ivey ask her to play 'Peek-A-Boo' or 'Pat-A-Cake' (and be ready to play it several times)

If you want to know something – ask! No question is too hard.

And foremost – always speak to the siblings – they are the people who take the brunt of it all.

But please, whatever you do, don't just stand there and stare… J

Dear......Dear Abby,

2010-08-02T09:54:00.008-04:00

I am just curious and by all means am not in the position to make a real judgement call except for the fact that I do have a daughter who NEVER seems to be able to step outside the confines of her house on any given day, for any given reason, with any given person without being stared at - whether in good taste or bad - so I am overwhelmed by your keen since of reason and fundamental ability to handout such insightful and truly supportive advice to parents in the masses like myself. And Dear Abby I must thank you for shouting to the rest of your readers - 'Hey, go ahead and stare all you want. Forget the families for they should just 'turn the other cheek' and never feel the confusioning need to step up and harbor the CHILD that stares inadvertently demean and belittle.' Because my dear Dear Abby, there have been days I have literally looked to the skies and thanked God for taking her vision - yes, Ms. Abby pick your jaw up off the floor now and dust it off - because my daughter has dodged the bullet by not being prey to those stares. She doesn't see them. But often I wonder if she 'feels' those stares.

And don't you worry Dear Abby the next time my seven year old or five year old sons - HER brothers - ask me why 'that' person is staring at their sister, or why do people stare at her 'all' the time - I am now better prepared - I can just shrug it off - its no big deal - I will explain to them that they should be bigger people even though they still reside in bodies that should be innocent and unworldly. Who will, Dear Abby, endure torment on the school playground because their sister is 'different', no matter what effort we the parents make to have her accepted in society so that they (her brothers) will be accepted in their small niche of life. Yes Dear Abby they will be easy targets. Dear Abby when one of my sons comes home for the first time in tears or from a fight because they are either shattered or bruised from living a life in the shadow of those harmless stares - I'll reflect to them your words of wisdom.

DEAR ABBY: I am the parent of a child with special needs. To an outsider he

looks different; adults and children stare at him when we're out.

My son is not aware of their impolite behavior, but I am -- and it really irks

me. What should I say to these insensitive people? -- BOILING MAD IN NEW JERSEY

DEAR BOILING MAD: I don't think you should say anything. It is not unusual for

individuals of every age to do a double take when they see someone -- or

something -- that is "different." Of course staring is impolite, but unless

someone makes a remark or asks a question about your son, you should ignore the

person.

Brother and Sister

2010-07-31T06:22:00.000-04:00

Brother and Sister

2010-07-31T06:18:00.000-04:00

Home sweet home

2010-07-29T02:17:00.000-04:00

Made it home.

2010-07-28T22:15:00.003-04:00

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

2010-07-28T16:20:00.004-04:00

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?

2010-07-28T11:23:00.000-04:00

Another night admitted

2010-07-27T21:53:00.001-04:00

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......

2010-07-27T13:17:00.001-04:00

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 --

2010-07-27T01:24:00.000-04:00

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 -

2010-07-24T08:32:00.001-04:00

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

2010-07-24T08:28:00.004-04:00

Our Little Minnow

2010-07-20T11:33:00.002-04:00

Ivey and Taylor July 2010

2010-07-20T11:19:00.028-04:00

Laughter

2010-07-13T01:14:00.000-04:00

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

2010-07-11T08:30:00.007-04:00

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

2010-07-09T15:03:00.002-04:00

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 -

2010-07-07T23:13:00.001-04:00

Let's try this. Not so grainy?

Callings

2010-06-26T10:18:00.000-04:00

We'll catch up soon, but for now, summer is calling. Well not actually summer, more like two boys and a little girl who is turning into a fish right before our eyes.

2010-06-10T21:17:00.001-04:00

Fighting bordom at the doctor.............

2010-06-07T22:47:00.001-04:00

Three Billy Goats....

2010-06-07T22:43:00.001-04:00

2010-06-07T22:35:00.002-04:00

The fantastic journey

2010-06-03T14:29:00.005-04:00

Sometimes it really is better than you can imagine.

For anyone whom ever thought of Ivey's journey as tragic – it is anything but that.

All I can say right now is that this is going to be one fantastic journey. Life may not always be easy….…but it really is a beautiful ride.

Wherever this road leads - our family – all of us – have been touched by an Angel.

Not much longer -

2010-05-31T19:10:00.000-04:00

tasty toes

2010-05-30T12:10:00.002-04:00

S Smarties

2010-05-23T21:40:00.054-04:00

Once upon a time I wondered how in the world Ivey would ever merge herself into this world and how we would survive in the normal world. You know the normal conversation world. Now I realize that she is doing just fine, the boys are just fine, it's me who can't get a grip some days. Some days it is hard for me to converse in both worlds.

The end of this school year is wrapping up. Bittersweet. It ended too quick. The boys have only a few more days and it is exciting winding down. Pool parties, field days and plays. Ivey has had some of those same things, but it is different- yet no less exciting. It's just different. Always different, and never a clue as how to prepare for what might be different and how that might rattle me. I try to think up all the scenarios that might occur that will be different in Ivey's life, different from the boys, different from the things that I see my friends experience with their daughters - and I mentally gear myself to go to those places, have the conversations, see the distinct differences between Ivey and other typical four year olds. This past week it came to my attention that I had overlooked one step. So slam - right in to the brick wall. Needless to say, this is about how my heart glows and smiles and aches all at the same time - it is hard to imagine that even possible.

Thursday Ivey completed her last day at the church preschool. A very sweet moment in time. It has been a magical. The opportunity to co-exist in a real classroom with kids who know she is different yet treat her the same. Her moment of innocent equality. She was part of the normal world – the children only saw Ivey – just Ivey – she is their friend. No being friends of the 'special' child; she was just special like all people should be. Never in her life will she experience a time like that again. The innocence in their eyes - well – it is what makes the difference.

And the members of her Ivey's League – they are heroes. Always unsung heroes. The ones that don't make the six o'clock news. Yet in my world – I can't describe them in words. They were there each day, every week – being her eyes and ears – her legs. They created an invisible bridge – that was very much real-and presented her an opportunity that most children like Ivey never have. I love them more than they will ever know. Ivey loves them. And as for Mrs. M. - priceless. Mrs. Mary unbelievable. Ivey existed in a room with only love and the desire to be her friend. How I wish we could bottle 'it' up and take 'it' with us.

Today I was at a birthday party with one of my boys. Normal. And then the mama conversation momentarily turned to the next school year. Next year's pre-K class. How I wish those parents would realize that Ivey would be a member of that class under normal circumstances. Despite the differences. Despite the fact that she will be at a different school from her brothers. Under normal circumstances she would be at their school next year. - How will I ever get through this next year seeing those children at that school and Ivey not there?

speaking up - or not - who would you be?

2010-05-20T21:51:00.001-04:00

I love it when my California friend is on my wavelength. It is probably a good thing there are many miles in between Georgia and California.

But the grocery store has been a thing of interests around here lately.

And here is Heather's latest post on Miss Zoe's blog, which is awesome. Worth watching every single second! Seriously watch every second -

Gwen

priceless

2010-05-20T08:48:00.002-04:00

The Difference..

2010-05-15T07:09:00.005-04:00

is our children. We are only the bridge between them. Our children are her peers. Will be her friends. Will support her as an adult when we no longer are able. Will include her through out her life as one of them.

They will rise above fear. Above self consciousness. Above the equipment. Above the stares. They will be guides. Her light will be their light, and their light will be her light.

The key is how we teach them. What skills we give them. The compassion we instill in their little heads and hearts - will make the difference.

After the last post - so disheartening -

This is what is real in Ivey's world -
LOVE and compassion and respect and acceptance +

And this is a group...cheering on the athletes at Special Olympics. Thanks Beth. One is my son - knowing the compassion, yet not quite knowing the real reason he is cheering. Not yet. He just knows to cheer. Supporting the participants. One of those athletes will one day be his sister. And as for those cheering on either side of him now - they will cheer too.

I’m Mad.

2010-05-12T22:35:00.007-04:00

Anger. It comes in many forms. Each day is unique. One good like yesterday. One like today - a roller coaster.

Today – as I was transferring Ivey from the carseat to her wheel chair, I observed a car pulling into the handicap space across from us. Anger. Out bops the woman. She unloads her pharmaceutical rep baggage (lots of it) and sashays to the elevator, baggage and 2 inch heels.

It was only when I was in mid sentence did I realize that I was actually projecting my voice toward her (loudly) across the parking deck. Oh my, my thoughts escaped my mouth and I was actually questioning the validity of her 'handicap'. She stood stunned. As was I.

Considering our location – the parking deck below Children's at Emory – I was enraged. This makes the third drug rep to have a handicap tag – I'm mad.

And then there was yesterday. I have XM radio in my car. Occasionally I listen to one of the comedy stations. Laughter is the best medicine right?

Well, as Ivey and I headed to one of her appointments – this is what she was bombarded with – with no warning. This is our battle folks. I can handle the one idiot standing telling his horrendous joke; what I can't handle is the theatre of people, those who walk amongst us, validating his joke. Laughing.

What do you guys think about this?

Remember the 'Retard Speech'?
Imagine placing any other 'minority' name in this 'joke' and the backlash that would ensue.

Click here, watch, then come back.
Ralphie May - Retards

Gwen - Ivey's Advocate

The Coaxing Of the Curly Hair

2010-05-11T22:44:00.003-04:00

As we (Ivey and I) were waiting on the elevator to take us up to the fifth floor for her doctor's appointment yesterday there was a sweet man waiting. He looked at Ivey and grinned then proceeded to wave at her and make baby talk with her. Ivey never acknowledged him. I just smiled and looked down at her. I thought it best to not embarrass him in front of the gathering line for the elevator.

Doors opened and in we squeezed.

Considering that Ivey was in her chair there wasn't much standing room in the tiny little elevator. He was standing beside her. He looked at me and said, "Is she, uh, well, how is she, good, I mean, uh…" Tongue twisted for words.

"Oh, she is great. Doing great now. She is blind and she doesn't hear well that's why she didn't acknowledge you before."

He said, "Oh that is good news, and uh, well, I um…... I tell you, that is some curly hair she has!"

"Yes sir, it is. I don't know what to do with it most days."

We were at our floor – the doors opened – I told him thank you for asking about her and off we went. Chances are we will never cross his path again.

But he confirmed, again, what I know to undoubtedly be true.

Early on at a conference I attended, one of the instructors suggested parents place an item on the wheelchair, walker or on the child – to give people a focal point. Something that they like, something to give others as a topic for conversation. An inclusive talking point.

I stumbled over that for a while. No matter what I tried it went unnoticed. The focal point was always the tubes, eyes/lack of, hearing aids, pump …..

And then her hair started to finally grow. It took three years for that blonde hair of hers to spiral out of her head and now, a year after her hair finally sprouted, I have my list of confirmations. Her hair is really the first thing most notice about Ivey, give or take, especially from a distance. Her talking point.

Not only is it her focal point, people ask me all the time if they can touch it. Just feel those spirals.
It's amazing how things work out. Ivey needs touch more than anything in this world – and she sprouted hair that lures people to want to touch her.

I would have to say that didn't happen by chance – considering that her mom, dad and two brothers got notta in the curl department. Must've been another one of those ordinary miracles –

Thanks miracle man.

The Special Mother

2010-05-07T11:05:00.000-04:00

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Happy Mothers Day

2010-05-04T22:45:00.001-04:00

Some Mothers Get Babies With Something More

Lori Borgman
Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

R. E. S. P. E. C. T.

2010-05-03T06:32:00.004-04:00

Our hands under Ivey's hands also known as HAND-UNDER-HAND.

This is the correct technique for communicating with Ivey. Whether showing her something or signing with her, this is how we do it.

VERBALLY tell Ivey you want to 'show' her an object, read a braille book or 'talk' with her.
Then TOUCH Ivey on the arm at the bend of the elbow. This will let her know you are about to offer her your hands.
Next, SLIDE your hands under her forearms to her hands. Often Ivey will start LOOKING for your hands from the verbal Cue alone. Searching with her hands for your hands.
Let her hold your hands as you EXPLORE a new texture, object or surface - Let her hold your hands as you SIGN with her.
Finally, always tell Ivey when you are FINISHED, both verbally and with the sign 'finished'.

And the number one rule that we all follow......never ever ever GRAB her hands!! No forcing. Remember palms are sensitive - introduce new textures on her arms or legs working toward her hands.

R.e.s.p.e.c.t her hands - they are her eyes.

2010-04-28T21:06:00.004-04:00

This year I noticed something different in all of the pictures of Ivey's birthday. This was the first year that there were none, no not one, somber face caught in any of the 400+ pictures. This year we truly celebrated - Ivey's birthday's are always a sweet reminder of life, real life, and all that it takes to live it. She wraps it all up in a pretty package for all of us. That's her gift to us. But this year- all of us- have learned to find the sweetness in all of life's lessons.....This year I see only pure JOY in all the pictures - Godspeed baby girl...my 'beautiful girl'
YOU ARE SURROUNDED BY LOVE - LITERALLY

All in all we collected many many books for Georgia PINES to be brailled for all of Georgia's blind/visually impaired or deafblind children. What a great gift to pass on...literacy.

IVIg and Emory

2010-04-28T12:36:00.001-04:00

Well, we (Ivey and I) are sitting at Emory again today. It's kinda weird being on another hospital campus other than Scottish Rite. But this makes the fifth week in a row, or is it six, that we have made this trek, so it is starting to settle in as part of our normal.

For those who are part of daily lives they are aware that we have entered into a new medical phase with Ivey. And to be honest no one is really certain exactly what is going on - if you were to ask any of them – because well, we aren't exactly sure what's up these days.

Here's what we do know definitely. Back in February Ivey spent some time in the hospital due to her seizures. Those little monsters have never been controlled, but they hit an all time high which earned us a luxury stay at Scottish Rite. While there two separate video EEG's were performed. You see even before the admittance, a CT scan and MRI had been performed. Ivey's craniofacial surgeon had the CT ran. Her neurologist the MRI. Both physicians called me on the same day within hours of one another wanting to have her referred to a neurosurgeon. Let's just say that was a bad day. Anywho, one video was scheduled. Ivey just got herself admitted before the scheduled hospital stay and an extra video.

With me so far?

While admitted Ivey spiked a nasty little fever to which the neurologist called in an infectious disease doc. Blood work was drawn. Results were found. Ivey is producing very low levels of antibodies. (We'll get back to the neuro stuff in a minute.) Not surprising, so many parts of Ivey are compromised – we hope this is it for the immune system.

So for the past couple of months we (Ivey and I) have been burning up the roads between home and Atlanta. One day Scottish Rite – the next Emory –some days both- several times a week.

To treat her low antibodies Ivey started IVIg then switched to Sub Q. These are infusions with human antibodies. The antibodies are taken from the plasma donated from all of you. More reason to give blood – Ivey needs it. The difference between the two, IVIg is every few weeks and takes several hours to infuse intravenously. Sub Q is weekly and infused by a needle inserted into her inner thigh. Both have been horrible for her. Leave it to Ivey to have the side effects that are RARE among the RARE.

Luckily the new immunologist now added to our list of docs believed our horror story. So today we are switching back to IVIg and trying a few things up her sleeve to see if it works. If not, Ivey may not be a candidate. If this does work, this is something Ivey will receive for the rest of her life.

Now – this is where my background comes into play. I'm a science geek. In college I majored in Biology and minored in chemistry. So in all of this time with Ivey I can semi hang in conversations and follow where our docs are going- most of the time. Like when the doc started talking about antibodies and IGg and t-cells, etc I could at least understand where we were in the conversation. But it NEVER fails; they take some fork in the road and lose me. But poor Matt is a business person – he doesn't get out of the starting gate sometimes, not all of the time, just sometimes. I at least get to the first curve on the race track before I pitter out.

Anyway – I'll be quite frank with all of you. These infusions have been hell on Ivey. Literally. She has been in pain for a period of time after each infusion. Pain that I haven't seen since her trac. What she has been going through for the last month is not a quality of life that we can endure her to. So we are trying everything possible – and if it doesn't work – she may not be able to receive these treatments.

The time in between treatments she has been healthier than ever. She even gained those 4 pounds. Her seizures are still going, but they are shorter and her Diastat in working – no ER visits with them since the IVIg started. All a plus.

As for the neurosurgeon – he has seen her too. Confirmed what the craniofacial surgeon caught on the CT scan. All of the sutures of her skull, except for the two at the base of her skull, have begun to prematurely close. For now though he wants to monitor her for a while. See if her skull grows AND if her brain is growing with it. Then we will talk options – surgery being one of them. Ivey has microcephaly and this is a contributing factor.

But from the MRI standpoint, there are some quirky areas in her brain that we are concerned about. Everyone will watch that too.

She is a complicated piece of artwork.

I've got some time on my hands today – hours of it – so fire away questions, if you have any.

And now I'm going back to start posting birthday pictures for everyone to see!!!

Four years in the make

2010-04-27T22:31:00.000-04:00

time for a bath

Just Another Ordinary Miracle

Time Divided...I need your thoughts

change me..

Surviving Has Side Effects

Transparency

Share

Bulldogs Black 2011

A Very Special Wedding

The seasons are winding down....

R.A.C.E Rome Sprint Triathlon 2011 - Team Ivey

Pictures

Agape love

Tad and Lily---- SOS

Where is here exactly?

What You're Willing To Give Up

Special Olympics 2011

Challenging the risks or is it risking the challenges?

To better explain our absence -

Head on over to Dairy Queen...for Children's Health Care of Atlanta

Special Olympics

5 years in the make ..... so does that mean I have to do chores too?

Run Your Race

Father Daughter Dance 2011 - delayed pictures...but she was the belle of the ball

S is for seizure

Rethinking the "F" Word

Knoxster

The Un-teach-able

To tell you the truth - I don't know which one is having more fun, Lori or Ivey -

Day .... well I can't even keep up with it now.

Day 13

Day 11

Determination

Cognitively, Realistically, Joy-filled

2010

Merry Christmas

sunlit

Ava signing "Ivey"

spinning

The Aftermath -

McHenry handicap accessible playground - pictures

Scars

Saturday - Game day battle....

Thurday

Q-Tip Turban

Two hours in -

rushed.

The broken curse

Goldilocks Goes Pixie -

Hair pulling 101

Touch the Top of the World

A New Post..

Here- Rascal Flatts

Here not there.

RN-T.com - McHenry wins 25 000 grant for playground thanks to community support

McHenry Primary Handicap Accessible Playground

RN-T.com - Darlington student McHenry playground can benefit everyone

Taylor

Hmm. This is weird.

Staring with Style

Dear......Dear Abby,

Brother and Sister

Brother and Sister

Home sweet home

Here’s Your Sign

Was it a mirage?

Another night admitted

Hospital Little Rooms......

She's Back --

Sleeping Soundly -

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

Our Little Minnow

Ivey and Taylor July 2010

Laughter

The Creepy Crawly

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

Ivey and Ava -

Callings

Three Billy Goats....

The fantastic journey

Not much longer -