Dear Lei,

To answer your question, no I am not immune to people and their behavior, and yes it hurts. I do not want to become immune. It is all part of life with Ivey. We take the good with the bad, and this part keeps us grounded.

If you are confused, let me explain. The other day my blogging friend, Lei, asked a couple of questions in reference to the post about 'our club'. She asked if we have become immune to people's behavior toward Ivey over time. (The negative behavior) She questioned if the behavior hurts. I have to say that just thinking about it cuts to the quick. However, it is a very hard question to answer because it makes me deal with something most people spend time desperately trying to avoid, especially when it comes to Ivey - reality. We take our spoon full of reality around here every day.

My instinct is to give Lei a round about answer that avoids the truth and makes her walk away feeling all warm and fuzzy on the inside. Something like, "Oh, it does not really bother me. I do not care what other people say or think. It's like water on a duck's back. I just turn the other cheek. " But the truth is I am human. It hurts. It hurts me and my husband. Eventually, Ivey will hear the pauses and understand the silence or she will feel the stares. What is worse, she will hear the words…the mumbling…maybe even laughter. I already loathe the day that Knox and Walker are taunted because of their sister's differences. Children can be cruel, but who do they learn it from? Just like the other day, the woman did not see my two sons watching her as she set an example. I just hope my example trumps hers over time.

Have you ever had to watch your child hurt and have no way of preventing the hurt? Can you imagine what it would be like to know every time you go somewhere new, someone will stare at you? What would you do if you knew your child would be called names or not want to be played with? Now multiply those emotions by infinity. She will always be the different one when it comes to normal children, or adults for that matter. That…. is reality.

I would like to say that I do not care how others respond, but it would be a lie. I do want my daughter to be loved and accepted for whom she is, but that is not the reality we are dealing with around here. We live in a very vain world based on appearance. What is it they say about first impressions or judging a book by its cover?

From the outside of these walls, I am certain that it is easy to just shrug shoulders and not worry. This particular area of Ivey's life has many gray areas that are not so simple. I have learned to keep a bow in Ivey's hair. Keep in mind that she only has fuzz, so I use a little trick the NICU nurses taught me. The bow serves as a focal point and it works. Now pauses are fewer. And since the weather has been cold she wears some really cute hats. I realize now that most people do not intend to be rude, they just do not know how to handle the situation. Sooo, they avoid it. It is a continual roller coaster ride of emotional highs and lows.

It is like Lauren said - the face of God comes in many forms….I get to look at him every single day.

A Night at The Fabulous Fox

Sunday, February 25th Matt and I celebrated Ivey turning 10 months old. We went to an event at the Fox Theatre in Atlanta. Our original intentions were to listen to a young man by the name of Patrick Henry Hughes play the piano. Oh, can he play!!

Patrick was also born with bilateral anophthalmia like Ivey. He plays in the marching band at the University of Louisville where he plays trumpet and is pushed around the field in his wheelchair by his incredible father. Patrick appeared recently on the Oprah Winfrey show and has had the opportunity to travel worldwide giving others the chance to hear his music.

We were also privileged to meet and hear Dick Hoyt. He and his son, Rick, form "Team Hoyt". Together they compete around the world in marathons and triathlons. Together they have competed in over 945 athletic events in the last 27 years. It was an amazing story to witness.

Matt and I had the opportunity to meet and speak with Patrick. What an amazing young man!

I encourage you all to be inspired by these two incredible families. Just click on their names to visit their websites.

Patrick Henry Hughes

Team Hoyt

Come Join Our Club

Good morning. It is 1:42 am. We have a new nurse tonight, the fourth new nurse this week. We switched nursing companies last Friday, so now we are on the quest for the right nurses for Ivey. Our nurse tonight got me out of bed just a little bit ago and now I can not sleep. My mind is racing back through the events of the day - and other days - while I listen to the nurse. She seems very sweet. And praise Jesus, she is not afraid to wake us up to ask a question when she is uncertain.

Due to a glitch last week, the new button that was only 2 weeks and 6 days old had to be replaced. They, the radiologist and GI doctor said originally to have it changed once a year. Ivey was at Scottish Rite at 8:00 am in the intermedial radiology for the exchange this morning - I guess that would be yesterday now. Ivey has gotten to know Amy, the radiologist, very well over the course of this G-J tube. To exchange the tube, Amy has to literally strap Ivey to a table. To say the least, no one was excited to exchange the button today.

Ivey's original appointment for today was to see her craniofacial surgeon to follow up with the palate surgery. We were at his office by 10:00 am. He said her palate looks wonderful. It is healing as it should. Ivey also has her first official tooth that has come in on top. It looks fine. This one is a keeper.

I also had the surgeon look at Ivey's right eye. If you have seen Ivey, you know that it tends to look at little 'more open' than her left eye. Ivey’s left eye has incredibly beautiful long eyelashes. Her right eye does also; however, they tend to curl under the socket of her eye along with the eye lid. He will do a little procedure on her sometime in the beginning of April to 'flip' (for lack of a better word at 2:01 am now) the lid back outward. I will know more tomorrow.

Today at Scottish Rite, like most days that Ivey is there, a since of belonging exists. When we are there, her issues seem small. Unfortunately, there is the feeling of 'it could always be worse'. Ivey can stroll through the halls and no one seems to notice her differences or if they do, they smile, ask questions, and then move along. Most people there have their own set of issues to worry about. Scottish Rite just has a lot of special needs children hanging around, special needs parents too. It is like our own little club.

I did not know what a craniofacial surgeon was until Ivey. Honestly, I had never heard of a craniofacial surgeon. Once Ivey was released from the NICU, I quickly found out. I'll share a short story with you. Matt and I celebrated our anniversary way back in June. He took us to Barnsley Gardens for a night. We were eating dinner - alone - for the first time - our first night away - we decided to try to talk about other things than just our children. Then from the table beside us we both hear the word craniofacial surgeon. We just looked at each other, both trying to hear what was being said. Who ever talks about craniofacial surgeons, especially when you are trying desperately not to? Three loud people sitting next to us, that is who. One was explaining her father was a craniofacial surgeon. The other two asked exactly what that means. The girls words exactly - I will never forget them, "He takes deformed kids and tries to make them look normal." Matt and I just smiled at each other and nodded.

Welcome to our club.

Today as I was sitting in Ivey's craniofacial surgeon's office waiting to get her procedure scheduled, I have sat in this office several times before and always do and think the same thing, and I looked around at the plaques on the walls. This time I noticed one I had not paid much attention to before. It had a picture of four severely deformed children. It thanked him for helping them. We thank him.

My friend S. was with us today. She is also a member of our club. So when she goes with us, she always sees our world. This is a story in itself.

We were waiting to check out of the office. A dad, mom, and little girl were ahead of us. The mom did something similar to what I do with Ivey at times. She noticed me and S. looking at her daughter and she kissed her daughter on the cheek and said, 'I love your cheeks.' Her daughter's cheeks were larger than normal, a deformity. She stated the obvious. Once the little girl noticed me and S., we spoke to her like you would any other 18 month old. Once the mom noticed Ivey in her stroller, she relaxed. We were in her club, not staring at her child.

Completely different scenario, Matt came home about 8:00 pm tonight. Knowing that he would be late, the boys were cranky, and Ivey's things were already packed, I took them to Harvest Moon. So there we were in all of our glory. The boys were being angels eating while I hooked up Ivey's feeding and meds. Then two women sat down behind us. One could look at our table directly. The other had to turn around in her seat. They were both saying sweet things about the 'tiny baby'. So I turned so they could see Ivey. One stopped talking and just stared. Normally I do not just offer up information, some people feel better not knowing. Ignorance is bliss. But since she stopped dead in her tracks, I had to say something. I just said - she is blind. The lady turned abruptly in her seat and would not even glance back. Nothing.

I would like to say this is not normal behavior, but it seems to be. In those moments of trying to stand tall for my daughter and my two onlooking sons, I feel so very proud of Ivey and my sons. There is not a word in the dictionary to describe the emotion that rises up in those moments. I feel sorry that they do not see the absolute beauty right in front of them. They are missing out on a true miracle and the chance to meet an Angel.

I will put a plug in for Harvest Moon here. Our waitress, a cute blonde, was phenomenal. She even took the boys to pick out a piece of cake.

One Fish Red Fish Blue Fish

The day I found out I remember thinking, "Is this physically possible? Are we crazy?" The day Matt found out went like this.....

Knox decided that he wanted a fish. That would be perfect.

We loaded into the then Expedition with our two boys. We drove to a local pet store.

As we were standing over the gerbil pin reminding Knox that we were there for fish, Matt asked, "So how many fish should we get?"

Perfect.

"Three. One for each."

Matt stared blankly at me for a split second. My normally discrete husband forgot that he was standing in the middle of a pet store. "What? You’re p.r.e.g.n.a.n.t? A.G.A.I.N?"

My thoughts "Yes honey, I did this all by myself." Seriously, can it be that big of a surprise? Men.

That's right folks - AGAIN. It was a record. There we were standing with a barely two and a half year old, a barely eleven month old and pregnant again. Three in three years. Insane, but precious.

We took three fish home that day.

Our Road Trip

Let’s pretend we are going on a road trip to DFW, Texas, maybe to see Sarah. Okay, here we go. We are driving down the road. Easy - we know how to navigate through our town and the general direction in which to go - west. At the city limit sign we must decide which town to travel to next so that we keep traveling west toward Texas - yes, Florida would be warmer right now, but let’s stay on course.

After rummaging through the glove compartment, we only find a map of Georgia. Oh, no. How will we ever get to Texas?

We keep pressing forward - west - toward Texas. Occasionally, we stop and ask a gas pump attendant for directions, only to be told, ‘Uh (scratching his head), I am not certain, and (looking perplexed) I think it’s that a way (pointing west and shrugging his shoulders).”

Now, we know we will need travel home once we get to DFW, Texas. So, we record where we are - where we have been - and we keep traveling west.

We do notice along the way that there is beautiful countryside between Georgia and Texas. There are mountains, valleys, curves, and long stretches of highway. However, when night begins to fall the beauty retreats and the route becomes somewhat scary and intimidating - the shadows become terrifying at times.

Occasionally, we make a wrong turn, read the road signs, and realize we are off course. We jot that down too.

Finally, there it is The Great State of Texas. Now we just need to get to DFW - We will stop and visit, enjoy ourselves for awhile. Then at some point, we must travel the long road home.
___________________________________________________________________

This is the best example I can think of to describe what life has been like this past 10 months. Only I am not so certain that I can pinpoint exactly where or what our destination may be. Nonetheless, here is what I have learned so far.

1. We are on a journey - to somewhere - with no directions.
2. No one is completely certain of the route either.
3. However, there seems to be more than one way to get there.
4. I am recording every step so that we can remember where we have been.
5. We will not go home the same way that we came.
6. Our daughter has been great joy in our life. Many of her issues have been our
greatest fears.
7. I have made mistakes along the way. In the battle to do what is right and good
for my children, I have hurt others who are vitally important to our family.
8. I do not think we are there yet; we are probably still somewhere in Alabama (if we are lucky), with a long journey before us, and a long journey home.
9. I am adding this - borrowing it from leslieann - Our tires are not spinning!! We are moving.
__________________________________________________________________

Writing the journey down has been vital for my own existence in the past 10 months. I want to savor every emotion, every high and every low. Unfortunately, I can only do this from my position in the car. The driver and the passengers all see different things from their prospective seats. Luckily, Matt and I switch from behind the wheel from time-to-time. Sometimes he drives other times I do. Sometimes we go the right way. Other times we make a wrong turn. We have hurt each other and others along the way. Maybe we just don’t call home often enough. Sometimes we just get tired of onlookers telling us the best way to go, the sights we should take in and how to make the trip easier. Yet, no one else can ride with us, there is not enough room in our car. They may meet us somewhere occasionally, but they never ride with us. Sometimes the boys are screaming so loudly in the back that we just forget that a world even exists outside of the car. Sometimes we just want to stop and stretch our legs, but the gas tank is empty and we must make it to the next gas station and hope that someone there can give us directions. Other times, we turn up the radio and sing as loudly as we can with it. Sometimes we play games to distract the children from the length of our journey. Sometimes we just stare out the windows at the beautiful land before us. Sometimes we just want to go home.

My Girls

I always wanted to teach my girls to set goals and then work - relentlessly - to achieve them. I have wondered over the years if that point was ever made from all of the opportunities I had to help shape their lives. Looking back, there are so many ways that I could have 'done it better'; but at the time, I was doing the best I could with the experience, or lack of experience that I possessed.

I was once told that my expectations were too high for girls their age (15 - 18). 'Really? The world is a lot tougher than I am.' The truth though, I was incredibly tough on them. Have you ever tried to keep 20 girls moving in the same direction? It ain't easy! They lived by guidelines - rules - consequences. I pushed them to their limits, or what they thought were their limits, and then nudged a little more. My girls were physically strong - in shape. Just ask any of my girls about boot camp, our bootcamp came about long before bootcamp was the thing to do. Oh, the stories they could tell.

I have often wondered if they got the point of their time with me. Did they get that the goal was never to win or loose, but how we played the game? Did they understand my expectations? I never expected them to be the best of the best, just to be their best, the best that they could be. Did they get that our objectives were never based on who was the best? Did they learn that they got more out of themselves when they worked toward the good of the team? As my coach used to say, 'There ain't no 'I' in 'Team'. I loved my cheerleaders and tennis players as if they were my own. I had to because some weeks they logged in more time with me than their own parents. Did they understand that I loved each one of them for who they were, not their talent?

My favorite coaching memory is about my tennis team. Going into the Region tournament, we knew the team that we were to play didn't always play by the rules. A lot of teams do this. They stack. Now if you don't play tennis, you have no idea what I am talking about. Stacking is basically taking the best players putting them on bottom of the roster to play the other team's weakest players. This is also known as cheating. It is dishonest. I never approve of this - EVER - even when adult league teams do this.

My girls wanted to counter-stack against this particular team. Their argument-they would be playing the girls they 'should' be playing. Nope. Not gonna do it. There were even a few parents not to happy about the decision. The girls couldn't understand why I would willingly put them in a position to loose. That's life, sometimes you are bound to loose. Long story short here. I sat my girls down and encouraged them. If they wanted the win they must overcome adversity. If they wanted the title, they must EARN it. Not everything in life is free or easy. We would play hard and we would play fair - and we would walk away having done the right thing - not the ease.

My girls were Region Champs that year.

What did I see that day? I saw my girls win Integrity that day - not a tennis match. They were proud of themselves. They were proud of each other. They learned to believe in themselves. They learned what it feels like to do the Right Thing.

I have always wondered what the other coach said to his girls that day. Sorry girls, we cheated and still didn't win, but we tried. I wonder what lesson they carry with them from that day.

She is our wonder +

Doctors have come from distance cities just to see me.
Stand over my bed disbelieving what they see here.
They say I must be
one of the wonders - God's own creation.
And as far as they see they can
offer no explanation.

I will be able...

I will be gifted...

with love, with patients and with faith.

I'll make my way

I do believe that fate smiled down and she is our destiny. Just listen.
Happy Valentine's Day.
This is what love is all about.
gwen+

Once Upon A Time....

Life with a daughter seemed almost surreal. We were planning for our third child, yet her conception caught us completely off guard. It seemed that she was to be a life of surprises right from the start.

I did not need a sonogram to tell me Knox was a boy. I think Matt actually wished Knox into being a boy. Walker is all boy; no guess work was ever required. With Ivey, Matt knew from the dawn that she would be a girl. This time he did not need a picture to tell him. The dream of our family was complete. There would be a mother and father, two sons, and one princess.

Plans for our future began to evolve. We are all guilty of it. We lay out our children’s futures before they have the opportunity to show us who they will become.

Matt and I made plans for Ivey- everyone did. She would have my blonde hair and my eyes. She would act more like Matt; she would forgo my lack of patients. I can remember someone saying, 'She'll be your very own cheerleader.' My thoughts to that, 'Ughhhh, the DRAMA.' Nonetheless, deep inside that is what I had wanted.

Nine months passed…..the night came; labor began. The dream was almost here.
Labor began at 2:00 am and was over by 5:30 am. She was in a hurry, no time to spare.

In an instant, one life began, one dream ended.

No? Will the world stop spinning for just one moment? What do you mean there is a problem? What cleft lip? What do you mean there is only residual tissue in place of her eyes? You think there are more issues? You are uncertain that she will live? But I thought I heard her crying? She must be okay? You must do testing? Can I just see my baby? Where is she now? When can I go to her? But.....?

What do I do with the dream?
A cloud settles in and you begin to move through the fog. Eventually the fog rises and all that is left are raw emotions. The dream does not vanish. It does not just go away. It is hopeless to pretend it never existed.

So, I mourned just as you would a death. In some fallible way, a death did occur out of the birth of life. I grieved for the daughter I had lost. I grieved for the daughter I had gained. I grieved for her uncertain future. I grieved for my own uncertain future. I grieved for her loss of friendships. I grieved for her loss experiences. I grieved for the loss of her future husband. I grieved for the loss of her future children. I grieved for the loss of my future grandchildren. I grieved for her. I grieved for the nine months of not knowing - of not having the mother’s intuition that there was a problem. I selfishly grieved for myself and the changes that were being instituted into my life, my husband's life, and my sons' lives.

Grieving is healthy. Normal. Necessary.

We will all grieve at some point in our lives. It is what we do with the grief - how we proceed through it that will define us. It will either make us stronger or it will weaken us. Some people encourage us during this time, some try to tell us how to grieve, others can try to make us feel guilty. I had to grieve 'my way' - there was no other way.

I can remember mom saying to me, 'You have to get over this; it's done.' My mom has been here every second I have needed her. It is hard to watch her sometimes. She is a very strong woman, but there are days she has to watch her daughter and her granddaughter hurt, and there is nothing she can do to help. She and I have a very strong relationship and can speak honestly to one another, even the unpleasant words. When she made that statement to me, she was trying to push me on through. I turned to her and said, 'You had two healthy daughters. You have no idea. As much as you love Ivey, you can not possibly understand what it is like to watch your own flesh and blood hurt, and at times be the one to hurt her, or be the one to make choices to hurt her. You go home and lay your head down on your own pillow in a quite house-a break from the pain.' My mom just looked at me and said, 'I can not imagine living one day in your shoes.'

The grief slowly subsided.

During those days I could literally feel God's presence at times. He was there. Still is. I think he smiles to see Ivey and our family now.

I still have a dream for Ivey. This dream is full of love and friendships. Many things that most little girls will do Ivey will never do. But do not think that she is loosing out in this life. Quite the opposite!! She has qualities that I deem as being superhuman. She makes us happy. She gives unconditional love. She sees you for what you really are on the inside. She opens hearts. She impacts lives. She is a vision of God. She can make people change to be better. She does all of these things and she can not even speak yet. The paths that she will take are enigmatic and I am so very blessed to be the one who will accompany her on her journey.

Ivey is a princess in a fairy tale. Just like Cinderella - it has taken some time to find the glass slipper - now the slipper is on and fits perfectly. The DREAM is just beginning.

Is that a light at the end of the tunnel?

Ivey's surgery punctuated the end of another sentence in our saga. Somewhere in the distance, a faint light is beginning to shimmer. The sun is beginning to peek from behind the clouds-and guess what? A silver lining does exist. We have been trudging forward afraid to glance too far to the left or right, not wanting to gaze too far into the future, yet reluctant to look back. While the entire time, waiting for more of the unknown to come crashing down around us. We have made it to the other side. Ivey's birthday is fast approaching and one year is quickly drawing to an end. For the first time since her birth there is a calendar sparse of doctors' appointments and surgeries, there is only the promising thought of Peace.

I sat down tonight to check my emails, and I took a quick peek at Ivey's blog. Here I am tapping away-the last thing I really need to be doing at this moment. However, I got the urge to type. In the past couple of weeks, I have been very reluctant to even post updates about Ivey. For a short while the wind was completely knocked out of me. I almost deleted the blog at one point, but Matt was adamant it remain. All I have wanted to do is turn the blog back over to Tasha and let her post. But here I am again.

I have never looked back over posts, so I did tonight. It is amazing to reread where we were compared to where we are today. We are still in a world of vast uncertainties; however, Ivey for the first time is truly content. She is unmistakably happy. This year has been seared with many exciting and wonderful moments, but few made it to Ivey's blog. This year has also been scorched with many heart wrenching moments. More of those moments seem to have made it here. Why? I really can not say. I do know that there have been many defining moments in the past nine months. Choices. Sink or swim, and somehow Matt and I have managed to merely tread water until we gathered enough energy to swim. Sinking has never been an option.

Right now it feels like we are swimming laps, but there have been many moments where the fear of drowning has swept through our bodies. In the beginning - Ivey's birth - I remember just wondering 'Why?' 'Why me?' I still wonder 'why' on occasion, but more often I wonder 'Why not?' I am qualified.

First off, Ivey is doing AWESOME! She is happy and playful. Having the new ‘button’ instead of the G-J tube hanging from her tummy at all times has given her some freedom that she has never had. She is adjusting to her new palate. It is fun to watch her check it out with her tongue. Unfortunately, she is wearing welcome sleeves for two weeks to prevent her from putting her fingers in her mouth. Welcome sleeves velcro around her arms to prevent her from bending her arms at her elbows. Ivey also has to rinse her mouth with Nystatin twice a day. This is a medication to prevent a fungal infection in her mouth. Tastes absolutely terrible-I tried it. Imagine not getting to eat and the few things that do go into your mouth tasting like some thing you apply to your feet. Ugh!!! She is a little trooper. Happy as a lark.

Super Bowl Sunday at Home? Really?

Ivey is going home tomorrow!

This surgery has definitely been better than the last. There have been no medical issues to deal with other than her pain. Her mouth is very very sore as well as her tummy. Pain medication is being administered every two hours to try and keep it as minimal as possible. Other than that, she is doing very well.