Wednesday, March 10, 2010

Rolling with the punches

If you're wondering where I've been lately...well, where should I start???

My last post was about Aiden turning two. Since then I've:

- celebrated Ethan turning 3
- had a joint birthday party at the "kingdom of chaos and germs" better known as Chuck E. Cheese's
- welcomed our friends April and Tate to our house for their visit from Dallas, TX
- ran my first 5k
- barhopped and rode "the bull" for the first time since college
- spent 2 nights at the hospital with Aiden for pneumonia
- filled 3 prescriptions
- got home with Aiden and 45 minutes later found myself at the doctor with Ethan after he covered the kitchen floor with vomit (ear infection and strep throat)
- filled another 2 prescriptions
- oh yeah, and made a huge life-changing decision that I am not yet at liberty to discuss...

Hmmm...both kids sick within 4 days of our visit to Chuck E. Cheese...coincidence much?

Anyway - I will post more about each of these fantabulous events once I dig out from the mounds of post-hospital-visit laundry.

In the meantime, please know how much everyone's thoughts and prayers during the past few days have meant. Both kids are back to "normal" - if they were ever normal in the first place is up for debate ;) But for them that means stealing toys from one another, dumping out the contents of my purse when left within reach, whining and crying every 30 seconds for no apparent reason and smearing play-doh in the ridges of a door jamb.

Jealous much? :)

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Sunday, February 21, 2010

HAPPY BIRTHDAY AIDEN!

My baby boy is now TWO. It has certainly been the most challenging two years of my entire life - and yet, surprisingly, also the most rewarding.

Two years ago, when Aiden made his grand debut that shook my family to its core, I had absolutely no idea how much I was capable of. I had dreams and ideas about the kind of mother I wanted to be - would be - but no concrete evidence that I would ever live up to my expectations.

Oh - but look at me now!

I've experienced the deepest pain my heart has ever endured, felt it crumble into a million pieces right inside my chest, then glued it back together piece by piece - slowly, steadily, and with the support of many.

I've been challenged and tested - as a mother, a friend, a daughter, a wife - and feel on top of the world with how things have turned out. My emotional wreckage has found calmer seas and bright blue sunny horizons.

I've learned things I never would have seeked out on my own - medical terms, surgical jargon, therapy suggestions - once exhausted by all of this information, I am now finding ways to empower myself and make a difference with my newfound knowledge. (More on that to come in the very near future...)

Whereas I once questioned what I was going to do with my life, I now have a deep and clear understanding of where I am going.

Most of all, I have SURVIVED!

And I owe it all to my boys.

And to this smile.

I am so abundantly blessed to be Aiden's mommy and so hopeful for his future. Every day that goes by I am reminded of all that he has helped me overcome - and become.

You know when people say their children are their inspiration? Yeah, I get it.

Happy birthday Aiden - my little fire :)

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Wednesday, February 17, 2010

Why I haven't posted in a few days...

Trust me, I have a few good posts in me about Aiden turning two. I've really really wanted to get them down into writing and share the pictures with everyone from his birthday (which was just a small celebration at home...his "party" will be in a few weeks at Chuck E Cheese - a joint endeavor for both Aiden and Ethan's big days).

However every time I sit down to write, it seems my boys sense the lack of attention being paid to them and start doing...

...THIS...


...AND THIS...


...AND THEN THIS


So...if I want to keep Ethan from "love strangling" his brother, to preserve my neutral walls from little pink hands (he said he was doing it to look like Minnie...), and to start piecing their war-zone of a toy room back together, I must close my laptop for a bit and rather than write about parenting, actually do it. :)

Until they nap. [Please God let them nap today]...

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Tuesday, February 9, 2010

In 2 days...

...I will have TWO 2 year olds!!!! Not many people who don't have twins can say that.

Aiden will turn two on Thursday and I can hardly believe it. At just 11 months apart, Ethan will hang on to 2 until March and I will try to hang on to my sanity.

I'm sure there will be a long post reflecting about the past two years on Thursday. But honestly, tonight I'm too tired to start thinking about it. :)

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Wednesday, February 3, 2010

If you can handle the cuteness...

I admit - I've been totally slacking on updating and posting new pictures. I finally hunkered down and got caught up. So...if you can handle the cuteness...click the links below!

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Monday, February 1, 2010

Something More

I borrowed this from a friend's blog. Carly and Jay have beautiful twin girls. One of them was born with a rare condition known as Holoprosencephaly (HPE). She pulled this from one of the support pages on Facebook for families with that particular condition: Families For HoPE.

Having a support network has been such a blessing for me and my family. I, along with Carly, often look for encouragement and motivation from others who are able to put into words what we sometimes cannot. It may seem small, but when someone is able to capture a feeling to which I can relate, or an idea that I support, or even a message that I wish I could get through to others, it actually has a very significant impact on my life. Pieces like the below provide honest perspective. Thanks for sharing this with me Carly!

SOME MOTHERS GET BABIES WITH SOMETHING MORE… 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. 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 yammering in your ear. I wonder how you endure the praise 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.

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Thursday, January 28, 2010

Meeting Mr. Dungy

Talk about ending vacation on a high note...

Most of you know about the plans underway for the 1st annual Little Fire Big Heart event benfitting Children's Craniofacial Association. I have a great group of friends helping me pull this thing together including reaching out to various businesses for corporate sponsorships. A few weeks ago, Ricky decided to contact a foundation that Tony Dungy, the Indianapolis Colts former head coach, is a part of called "All Pro Dad". He simply looked up the website, found an email address under Contact Us and sent a little bit about Aiden and the event.

Just a day or so later, someone from Family First, the parent company of All Pro Dad, had responded asking him to send the information to a different email address. When he did, he received an out of office message that provided yet another contact person's info, including a phone number. So he called. And he got in touch with Tony Dungy's executive assistant. For a few weeks, they emailed back and forth - Ricky provided additional details about Aiden's journey, as well as answered questions about Little Fire Big Heart. Although we knew it was a long shot, Ricky's request was to see if there would be any way to have Mr. Dungy attend the event as a keynote speaker.

You might be wondering what a former NFL coach has to do with our personal story. Why, you might ask, would his presence be relevant?

Shortly after Aiden was born, one of Ricky's co-workers let him borrow Tony Dungy's book "Quiet Strength". I remember thinking it was a nice gesture, but I had visions of it collecting dust on our bookshelf until I reminded him many months later to give it back to the person that lent it to him. My husband does many things - quote lines from movies and tv shows, make a mean batch of dumplings, throw the kids into the air until they scream with delight - but one thing he does not do is read.

However, to my surprise, less than a week later Ricky was raving about the book. It left a huge impression on him. I have not read it myself, but he said that the story was very inspiring. I think Ricky found that he could relate to some of the challenges and adversity that Mr. Dungy has faced throughout his life. What really resonated with him was reading how someone like Tony Dungy learned to rely on his faith to overcome some of the challenges that were presented to him. A few years ago, Mr. Dungy's teenage son committed suicide. He also has an adopted child with a rare medical condition. He, like all of us, has dealt with his fair share of pain and sorrow. Yet his ability to carry on with strength of character and a positive take on life is truly admirable. Something that Ricky was able to pull some strength from at a very difficult time for us as a family. Thus, his desire to connect with Mr. Dungy developed. We hoped to be able to have him speak to our event audience about making the best of things. About the importance of faith and family. About overcoming obstacles and helping our children do the same.

During Ricky's coorespondence with the Family First contact, we were told that of 22 requests submitted last month, 5 were sent on to Mr. Dungy's desk for review. Ours was one of them. Wow!

Although he is not available to speak at Little Fire Big Heart, we found out that he wants to donate to our cause! We wanted to provide the packet of information we put together for sponsors/donors and noticed that ironically, Family First has an office in Tampa - where we were going to be the following week for vacation. Ricky spoke to his contact person who arranged for us to drop off the event packet on our final day in Florida on the way to the Tampa airport to fly home.

We brought the boys into the office with us even though we were expecting it to be just a quick stop inside. Unfortunately, the person we were supposed to leave the info with was out sick, but another woman knew we were coming and greeted us at the door. Just as we were about to head out, another woman said that the original contact person (who was not in the Tampa office) was on the phone and wanted to speak with her while we were there. She led us to her office and took the call. With a slight look of surprise, she hung up the phone and asked us to wait just a moment.

Before we knew it, the Family First president, Mark Merrill, and Tony Dungy himself walked into the office and shook our hands! The look on Ricky's face was priceless. He was meeting one of his idols. This was a good day. We told Ethan that this was the Colt's old head coach, to which Ethan replied "Go Colts!" (Ricky has taught him well...) He met Aiden and we talked a little bit about his journey. He had information about our event in his hands - and not the paperwork we had just brought with us that day - emails. He really had reviewed our request personally. He said that he normally is not in the Family First office on Wednesday's but that it must have been God's plan to have us meet that day. He told us he knows the road of dealing with medical challenges with his own son quite well and he hopes the best for Aiden. He said he would love to partner with us in some way and make a donation to our cause. Then, to top it all, we were ushered into the media room for a quick picture with Mr. Dungy.

We couldn't have ended our vacation any better! I am so proud of Ricky for following through with his idea to contact Mr. Dungy. He was persistant and it definitely paid off in the end. Hopefully we will be able to bring more awareness to craniofacial conditions with the help of Mr. Dungy's kind heart.

A HUGE thank you goes out to Tony Dungy and the staff at Family First/All Pro Dad!

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Ahoy Matey!

Another fun family outing while in Florida was setting sail on Captain Memo's Pirate Ship. Aiden stayed back at the condo with Nana to nurse his bronchitis, ear infections, and general case of the miseries while Ricky and I took Ethan to hang out with the pirates.

It's hard to believe that this 2 hour cruise for the three of us cost more than our entire day at Disney (our admission to Disney was free because we completed a volunteer project a few weeks ago as part of the Give A Day, Get A Day program). But I will say that it was worth the price. Ethan had an absolute ball hanging with the pirates and playing with the other kids aboard the ship. They did a great job catering to families - games, water gun fights, treasure hunts for the kids...free beer and wine for the adults!

It was our last full day of vacation and the perfect finish!

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Some REAL Florida Gators!

We were so very lucky to be able to do some pretty cool things on our vacation. My uncle Kenny has a place in Tampa and met up with us at one of the beautiful Florida State Parks to take us on a canoe trip down a little river running out of the Bay. We were on the lookout for alligators - and since Kenny had frequented this park, he knew where most of their resting spots were along the bank. I have to admit I was a little nervous about this excursion, but I put on my brave face and went along for the ride. I had only one request - to paddle with Kenny (not my husband or my dad)...not that I didn't trust them, but well, okay I didn't trust them. :) I wanted to be with the most experienced of the bunch. We even brought Ethan along too! He thought it was pretty cool  although it took him a little while to find and focus on the gators that blended so well with the grass, mud and water.

I think we saw about 7 or 8 gators with the biggest one being about 5ft long, several turtles of various sizes, birds of all kinds, beautiful cyprus trees, palm trees and Spanish Moss (which, I learned, is neither from Spain nor is it moss)!

The river was very smooth and flat which made for a relaxing trip. Besides getting about 10 ft. from alligators, the most nerve-racking part would have to be when Ethan announced he had to go potty. We were about half way through the 2 hour trip which meant we had to improvise and figure out a way for him to relieve himself. Let me tell you, I was one nervous momma holding my 2 year old over the edge of the canoe while keeping the boat balanced so we didn't tip. Not to mention that we had to dig the nose of the canoe into the bank to keep it in one spot. THE SAME BANK WHERE WE'D BEEN SEEING ALLIGATORS! To make it more interesting, he had to do it twice along the way, with the 2nd time being - ehem - #2. Luckily Kenny had a backpack with some supplies including Purell wipes...

Most importantly, we all made it back safe and sound and we had a great time! Thanks Uncle Kenny!

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The Happiest Place on Earth

We recently returned home from our wonderful (and much needed) family vacation to Florida where we stayed with my parents in their beachfront condo in Clearwater. They are renting for 2 months and invited all of their kids and grandkids down to visit. Because it is only 2 bedrooms, my sister and I decided to overlap our stays, allowing us the chance to go to Disney World together but not having to deal with cramped quarters for an entire week.


We flew in last Wednesday and planned our trip to Disney for Thursday. What an AMAZING day it was! The weather was perfect - not too hot, not too cold. The kids were (surprisingly) ALL very well behaved the entire day. And everyone had a blast. Some of the highlights included:


~ the PhilHarMagic 3D show ~


~ meeting The Kolis family and their adorable little guy Isaiah, who, like Aiden, has Apert Syndrome ~


~ going through Mickey Mouse's house and meeting Mickey and Minnie in person (although, as you can see, not a highlight of Aiden's day...) ~


~ watching the lights and fireworks show in front of the castle after dark ~

But the best moment by far was Ethan visiting the Princesses.

My nieces were so excited to meet them, and we thought it would be fun for Ethan too (although Ricky was a little preturbed by Ethan's level of excitement...)

After waiting in line, we were shuffled as a group into a private room with Sleeping Beauty, Cinderella and Belle from Beauty and the Beast.

Ethan blushed a little as he approached Sleeping Beauty. We thought he was going to be very shy with her, but instead, he talked to her in a little whisper with a cute grin on his face. When his turn was almost over, he gave her a hug and then...planted one right on her lips much to her own surprise! Sleeping Beauty was blushing now!


We ushered him along to wait for his photo with Cinderella. As he stood patiently waiting his turn, he looked up and announced "After I'm done kissing all the princesses, I want to go ride the pirate ship!" HA! Of course, Ricky was like "That's my boy!" and we all had a laugh. The princesses just ate him up, calling him Prince Ethan and leaving their spots to come and steal more pictures with Ethan (and probably hoping for another kiss). It couldn't have been any cuter!

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The Very Same Waves

Two years ago, my parents decided to splurge and rent a condo on Clearwater Beach in Florida for the month of February. My sister and I were both pregnant - she was due in January and I was due in March. Avery came when expected - January 11. Aiden, on the other hand, came a bit early and with his surprise diagnosis of Apert Syndrome, caused quite a stir in our family. Especially since my mom and dad wanted desperately to be there for me to comfort us during this difficult time. They thought their February trip was well-planned around our due dates. Unfortunately, mother nature had a different plan and unfortunately they were not able to be there to hold my hand and cry with me. Instead, they heard the news with a phone call on February 11, with waves crashing in the background. They raced to book a flight to Louisville to be with us.

Last year, my parents didn't make the trip to Florida. They didn't want to miss Avery and Aiden's 1st birthdays. But this year - with no pregnancies and no ultra-important dates to keep them from going - they decided to rent again, this time for 2 months. They invited us to come down with our family. Of course, we jumped at the chance.

They rented the exact same unit in the exact same building where they stayed 2 years ago. As we touched down in Tampa and drove to the condo, I couldn't help but begin thinking about the night we called to let them know of Aiden's arrival. After we threw open the door, after we were greeted by my parents, my sister and brother-in-law, and their two girls, and after we ran down to the beach to feel the sand in our toes - after all of those moments settled, I looked around the beautiful condo and felt a wave of emotion.

I wanted to know where my parents were standing when they got the news. I had to picture it. Live it. Again. I wanted to know what room they went to to cry. Out on the balcony to let the waves drown out their thoughts and fears? In the salmon colored bedroom swallowed up in the down comforter? It was strange being there. They said they felt the same resurgence of emotion as they walked in the first day. But then, we caught a glimpse of Aiden, almost 2, tearing through the place like any 2 year old would. Touching the wooden fish decorations under the glass top coffee table. Running from end to end of the balcony.

And we realized...The same waves from the same ocean rolled in just as they did 2 years ago - yet, this time, the fears that crashed into the shore that night with every wave have now subsided. Instead we were able to relish the moment in amazement and wonder at how well Aiden is doing today.

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Monday, January 18, 2010

Raising Different

When I was in elementary school I caught the bus at the corner of Creekwood and North Colony every morning. And on my bus there was a boy that was ridiculed on a daily basis.

He was quiet. Shy? Maybe. More likely he was just conscious of the ridicule and decided not to "put himself out there" by showing the more real parts of him. While I don't pretend to be the most non-judgmental person in the world, I will say that I was drawn to this boy. I wasn't sure why at the time, but it is now very clear that this was part of God's plan. Part of His way of developing me into the person that I have become. The person that I needed to be.

He was quite a bit older than me - I was maybe in 2nd or 3rd grade, he in 5th or 6th. I remember someone asking him what he was going to dress up as for Halloween, hoping he would reply with something that would give them reason to make fun of him. He was unaware of the prodding and before he could respond, I flipped around in my seat and said to the other kids on bus 236, also older than me, "Just leave him alone." I surprised myself just as much as I think I surprised him and the rest of the children.

Even though I had once sat a few rows up from this same boy at the start of the school year and whispered with my friend from down the street about his speech impediment and odd, gangly stature, I had suddenly realized that my gut was telling me it felt wrong to do so. I felt compelled to stick up for him.

This incident on the bus has stayed with me for many years (obviously - I'm still talking about it today!) and now I know why. What I didn't know then was that I would eventually be given the very important task of raising a child much like the boy on the bus. A child that is different.

I often find myself obsessing over what Aiden will encounter in his school years. How many times will he be ridiculed for the way his hands look or the facial differences that will become more apparent as he grows? I wonder what I can do to make his road easier. Can I do something to educate people about Apert Syndrome so that it will be more accepted? What about simply educating people about differences in general - teaching them to appreciate, acknowledge, accept what is different rather than belittle, ostracize and embarrass.

I know it is an ambitious goal. And ironically, I write this on Martin Luther King Jr. Day. A day that honors the dreams that Dr. King dreamed as well. Of a world that accepts people for their differences.

Most people can relate to my journey in some form or another. At some point in our lives, most of us will encounter adversity. It is my goal to give people a glimpse into what it is like to have a child that "looks different". If I can make people understand by sharing this ride then I am doing a small part. And if I can open people's eyes by making them appreciate their lives while also accepting those that might have a tougher road, unfortunately, due to the way they look, then I am one step closer to providing the life for my child that I want him to have. The life that he deserves.

Many people have asked what they can do to help. And while I am so very grateful to those who have offered support monetarily for the event we're organizing for CCA, I also want to remind everyone that perhaps the more important gift to give our family is that of spreading awareness. Share this blog with others. Send your friends and family a link about Apert Syndrome (see the link on the menu bar at the top). Point people in the direction of Apert.org or ccakids.com to help people learn about craniofacial conditions. Hopefully then, if they encounter someone with a craniofacial condition, rather than turning away to keep themselves from staring, they might feel brave enough - educated enough - to smile or start a conversation. To ask how their day is going. To treat them with the same respect that would be granted any other individual.

My purpose in life as a mother is much more clear than it ever was before. After much fear and reluctance, I readily accept this challenge. And I am starting to see how there are many aspects of my life that have unknowingly prepared me. I am grateful. I challenge you all to think about how your life would be affected if you were "raising different" too. How would you feel if your child was that boy on the bus. Wouldn't you want someone to stick up for him too? Food for thought.

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Tuesday, January 12, 2010

A Magical Christmas

Yes, I know, it is the 2nd week of January and I'm just now getting around to writing about Christmas. My excuse? Spending this year without worrying about surgeries, surgery preparation, recovering, germs, etc. was thoroughly enjoyable. We were very much into the holiday spirit this year and I just wanted to soak up every minute. And honestly between opening the kids toys that littered the living room floor for days (and cursing the darn things that are harder to open than the vault at Ft. Knox), stepping over the unpacked suitcases and finding the motivation to un-decorate - all I wanted to do was...well, nothing.

But it is now the 12th. The Christmas decorations are all a distant memory. The new toys have found a corner in the toy room to occupy. As for the suitcases, they have yet to be unpacked from the many trips we've taken over the past few weeks. Oh well.

Christmas this year really was magical. It was so much fun witnessing the twinkle in the boys' eyes each night as Ethan would ask "Is tonight the night Santa comes? Is it mommy? Yet?" I'd point to the books that remained unread in our "Countdown to Christmas" bucket, prompting him to count each one and declare how many were left.

St. Nick was a little confused, making his quiet appearance a few days late (oops ;). But as promised, he brought matching red and green Mickey pajamas for the boys to wear on Christmas Eve - a perfect find considering our upcoming trip to Disney. (That St. Nick always has been a good shopper!) And he filled our shoes with small goodies to enjoy.

A few days before Christmas the boys and I collected a few gently used toys from their play room, sanitized and bagged them, and delivered them as a family to St. Joseph's Childrens Home in Louisville. Ethan was very excited to "share" with kids who might not get many toys for Christmas. We hope to do this every year.

The boys awoke on Christmas Eve morning with tons of energy in anticipation of all of the fun things ahead. We relaxed a bit, enjoying the calm before the storm, then headed to my grandma's condo in Louisville. It has been a family tradition to spend Christmas Eve with my dad's side of the family and I'm so happy that we've been able to continue to do so even now that I have a family of my own. Although it could have started out a little better. No sooner than we walked into her place did Aiden "explode" through his holiday attire. Luckily, with some quick thinking, I was able to toss his clothes into my grandma's washer to get them clean and dry before we left there for church.

Last year, Christmas Eve mass was a joke. The boys wanted nothing to do with sitting still so after Ricky was dripping with sweat from wrangling our little monkeys as best he could we realized it was hopeless and made our exit before the choir even finished their pre-mass numbers. This year, I'm happy to report that even with an entire pew filled with just our family (Ricky's parents, sisters, their spouses and all of our kids ages 1, 1, 2, 2, 4 and 6), we were able to stay until the end. They were actually pretty good. Ask the people seated near us and you might get a different story. :) After church we went back to Ricky's mom and dad's for food and opening presents. It was "organized chaos", but all in all a lot of fun.

When we got home and tucked the boys snug in their beds the fun for Ricky and I began. Once the gifts were placed around the tree we made a drink, took some pictures and then exchanged our gifts to each other. Ricky usually gets too excited to wait until Christmas morning, and we agreed that it is kind of nice to have the time to ourselves to do this so we can focus on the kids in the morning.

At the surprisingly "late" time of 7:15am, Ethan yelled for us from his room. We grabbed the camera, woke Aiden up and headed downstairs to see if Santa had come.

"He did! He did! Santa came Mommy and Daddy!" Ethan could barely contain his excitement. Aiden clapped and ran to the Thomas Train ride-on toy that took up half the living room. We could barely pry him off of that thing to open the other presents under the tree! Last but not least we led them to the basement toy room to see their new Thomas train table handmade by the brother-in-law of my Aunt Susan and Uncle Chris. It was the perfect end to a perfect morning.

We then loaded up the car and drove to Northern Kentucky to my parents' house where we got to do it all over again!

We feel so blessed to be able to enjoy the holidays with our family. We feel so relieved to be able to do it all this year without the stress and anticipation of surgeries and hospitals. We are so very lucky!

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Friday, January 8, 2010

First things first

I know I've got a lot of catching up to do - so I'm going to start with the most important subject matter...an update from my most recent trip to Dallas with Aiden...

Aiden has had 5 major surgeries since his birth. Four of the 5 have been with the team of specialists in Dallas at the Craniofacial Center in Medical City (the other one was a strabismus surgery done locally). With these major surgeries out of the way, and no others on the horizon, our visits to Dallas will now be on an annual basis for a sleep study, an MRI and head growth measurements.

Monday morning, bright and early, Aiden and I flew to Dallas for the first of these annual visits. The last trip there was back in June for a post-op visit following his cranial vault and ear tube placement. It seems odd to say this, but having the frequent visits throughout the last 18 months, although not really fun, offered some reassurance as to Aiden's development and overall health as related to his syndrome. So, having to go from June to January was quite different. Even stressful at times. As we had no validation that everything was "okay" other than his regular pediatrician appointments - which are great, but as a parent dealing with a child with a rare syndrome, I tend to err on the side of caution and need the extra reassurance of the expert in the field (his team in Dallas).

We arrived at DFW and were met by our good friend April and her two absolutely adorable kids John and Rory Cate who brought us a car seat loaner for our rental car. We then headed to their house to let the kids play. She treated us to homemade chili and cornbread before Aiden and I had to get to the hospital to register for his sleep study that night.

The next morning we checked into a hotel (poor Rory Cate got sick the previous evening after we left and we didn't want to take any chances getting Aiden sick as well, otherwise we would have stayed with the Gorman's like they offered). I had just enough time to give Aiden a bath to scrape all the goop off of his head that they used to hold the probes on for the sleep study, and somehow managed to grab a shower myself, before we turned around and headed straight back to the hospital for his MRI.

A few good breaths of the inahaled sedative and Aiden was ready for his test. It only took about 35 minutes and then I was able to hold him as he "came to" as the sedation wore off. The results, we were told, would be ready for Dr. Fearon to share with us during our appointment with him at 4pm. Ugh - what a long wait that was!

Meanwhile, we breezed through 3 more scheduled visits: one with the anthropologist who takes measurements of Aiden's noggin to follow the growth and development of his head shape and size, another with "Media and Photography" where they snap photos of his head from the front, the top, and the side, and also of his hands and feet, and finally a quick stop to an ENT to discuss the function of his ear tubes placed last May.

It was confirmed during our visit with Dr. Kolar, the anthropologist, that Aiden's left brow/orbital rim is lower than his right, making it appear that his left eye is smaller (or droops) to some extent. I had him compare the measurements from Aiden's post-op visit last June to those he was currently taking and it was determined that the difference in measurement had in fact increased durint that time period. This means that growth in that particular region differs in degree on the left than on the right. Dr. Fearon was able to explain more...so I'll give more info when I get to that point.

The pictures went fine. He was not afraid of the camera, just of the headband that they needed him to wear to pull the hair off of his forehead. He was not a fan. But a just a couple minutes later we were finished.

Good news at the ENT. Even though his left ear tube had fallen out just a month after it was placed, it appears that his ears had no fluid and no infection at the time of that visit. The right tube was still in place, but was blocked, which Dr. Peters said didn't show to be causing any problems for the time being. He does not think we need to replace the missing tube. And he even mentioned that at this point, it seems Aiden has "outgrown" the need for tubes in the future. He mentioned that Aiden is on the more mild side as far as Apert syndrome is concerned (which we knew, but it is still good to hear). And when I asked him about my concerns with Aiden's speech and how it might be related to any ear issues, he said he is confident that based on his examination, his speech development shouldn't be inhibited as his anatomy looks great and his ears are functioning properly. (So any speech issues are either simply a developmental difference or may be because of his high-arched palatte, related to his syndrome).

Finally, the all important appointment time came. Aiden was full of energy waiting for Dr. Fearon in his office. And when he came out to greet us, Aiden didn't hesitate to explore every nook and cranny of that place. He immediately found the toys Dr. F keeps on a table in his office and headed straight for them. He attempted to sneak past him to get to his computer. He pulled books off his shelf. Dr. Fearon was clearly impressed with his development as his first words were - "Wow, he really seems to be doing GREAT". That's my Aiden :)

And next, a huge weight was lifted from my shoulders. Dr. Fearon said "All of his test results came back GREAT". He continued to explain that his sleep study showed 6 central apneas (where the brain forgets to tell the body to breathe), but that up to 10 apneas is considered within the "normal" range. So no issues there. The MRI showed no evidence of pressure in the brain, no chiari malformation, ventricles appeared to be normal size. One thing he did find was a small arachnoid cyst near the cerebellum. This scared me a bit, but he reassured me that he is not worried about it in the least. Essentially it is a small benign growth, kind of like a mole, that presents no problem in the majority of cases. It doesn't require treatment (unless it later becomes troublesome by causing headaches or other symptoms). In fact, he said he was so pleased with everything that rather than schedule our next visit for one year later, he was comfortable waiting 18 MONTHS! AND...HE EXPECTS NO SURGERY WILL BE NEEDED FOR YEARS!!!! Yes, I said YEARS! That is quite a relief considering he's had 5 in a 7 month period during the last year and half!

So what does Aiden's future hold? Dr. Fearon explained that Aiden will need another cranial vault, and mostly likely will need an additional one after that. This is because as he continues to grow, the brain still needs extra space that because of the fusion of the sutures in his head, requires surgery to ensure that the right amount of space is there. He will also need to have his midface advancement surgery ideally around age 8. This is where he will have a large metal device attached to his skull with pins that will slowly extend the portion of his face from his brow bone to his upper jaw forward with the turn of a screw (we will be turning the screw from home on a daily basis over a 6 week period...yuck). But we will cross that bridge when we get there. Finally, during the next surgery - whether it be a cranial vault or during the midface surgery to attach the device - he will, at the same time, correct the difference in growth of the left vs. right side of the brow bones that mentioned earlier, straighten his right index finger that is severely turned, fix the regrowth of some skin between two of his fingers, and deepen the spaces between his big toes and the toe next to it.

Despite this laundry list of "maintenance" that needs to be done, all in all, great news. NO SURGERIES FOR YEARS!!!! As we soared through the air on the flight home, I was definitely on cloud 9. I will admit that a part of me couldn't get the whole arachnoid cyst off my mind, which led to a consultation with Dr. Google (not usually a good idea in most situations, unless you want to be freaked out with very inconsistent information and typically worst-case scenarios). It did prompt me to send an email to Dr. F asking more questions about it. I have not yet heard back, but when I do, I will let everyone know what he says.

Once again, I can't thank everyone enough for all of the thoughts and prayers throughout our journey. There are so many people out there pulling for our little guy, some that I know of and others that I may not even know, and we truly appreciate it from the bottom of our hearts. It's working!!!! So keep 'em coming!!!

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Thursday, January 7, 2010

2010 - This year is gonna be about ME :)

I'm not saying this to be selfish. Really, I'm not. In fact, when I say that this year is going to be about ME, I mean that I want to improve every aspect of my life - namely my relationships, my health, my mind, etc.

I want to be a better version of myself so that I can be a better wife, mom and friend. So, you see, by focusing on myself this year (something that I haven't been able to do in the past couple of years...hmmm, I wonder why...), I'm actually thinking about everyone else :)

To help me do this, I've recently come across a pretty cool website called MindBloom. In a nutshell it is a tool that uses cute little trees to track your individual goals. You can add big goals as branches to the tree and smaller steps to reaching those goals as leaves on the branch. With every new goal you can watch your tree "bloom". You can share your tree with others (and vice-versa) and then you can motivate them by sending messages as they complete a step towards their goal.

I signed up for a 14 day free trial - and the first step was to describe your "Life Vision". So while my tree will hopefully continue to bloom well past 2010 with the many big goals I have for myself and my future, I've narrowed it down to my vision for this year for now. Here it is:

This year is going to be about "ME".

You all know how crazy the past 2 years have been: 2 pregnancies, adjusting to 2 kids under 2, Aiden's special needs and surgeries, etc. Now that we are finally over the hump so to speak with Aiden's major medical needs (for now anyway), I really want (and need) to focus on myself in all aspects.

I want to nurture my relationships - with my husband, my children, my family, my friends, and with God.

I want to better my physical health - by exercising regularly, eating healthy (no diets!), drinking less and sleeping more.

I want to focus on my spiritual and emotional health - by allowing myself more "me" time without feeling guilty, adjusting my attitude to be more positive, asking for help when I need it, and sharing more about my life journey to help others who feel inspired when I do.

I want to continue to stimulate my mind - by reading books, watching less tv (yikes!), writing every day, thinking things through very carefully before I do them, and utilizing my skills and strengths to do good things (like raise money for CCA through Little Fire Big Heart).

I want to set big goals and NOT GIVE UP until I reach them! Whether they are accomplished in 1, 5 or 10 years - having them down on paper (or computer LOL) will help me stay focused. Help me to "keep my eye on the prize".

I know there are big things in store for me. Now I just need to get myself healthy and ready to take on the challenge!

I'd love to hear your Life Vision - or your 2010 version at the very least!

PS - I was not asked by MindBloom to mention their website, nor compensated in any way for doing so. Just stumbled upon their site and felt like sharing! :)

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Lots of catching up to do!!!

Lots to say about Christmas, our New Year's Eve party, trip to Dallas, my New Year resolutions, house selling update (no, it isn't sold yet), and info on the progress of Little Fire Big Heart. Plus, lots of picture updates!

But first things first - I've got to clean the house and get myself organized.

(Funny how Ricky can be gone oon a work trip and I can clean the house, care for the boys, pay the bills, sort the mail, do fourteen loads of laundry, etc....yet I come home to the same crumbs on the kitchen counter and the same pile of clean clothes waiting to be folded on the couch. Yeah...real funny. Guess the jokes on me!)

PS - I love you anyway honey :)

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Thursday, December 17, 2009

Move over Justin Timberlake!

Ethan can usually be heard throughout the house at all times of the day. Whether its his jibber-jabber or his rendition of "Twinkle Twinkle", he's constantly talking. Or singing.

He's not really camera shy. But this particular performance must have worn him out as he pleads with me not to make him sing it again at the end.

All I can say is watch out Justin. The boy can sing. And he's got some moves...I've just yet to get those on camera (cause I'm usually too busy laughing my a** off)!

(Click on the play button to see the videos. But before you do, scroll down to the bottom of my blog and press the pause button on the music playlist. That way you will be able to hear him singing.)

video

And I'll throw a cute one of Aiden in for good measure. Every time he sees a camera, he stops, poses and gives me his best, cheesiest grin. Neither of my kids are camera shy it seems.

Hmmm...I wonder where they get that from? :)

video

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Wednesday, December 16, 2009

The grass ain't always greener...

You've all heard the expression. 'The grass is always greener on the other side.' And sometimes it would be easy for my family to submit to the fact that things could always be easier. But we aren't going to. We're not the type.

Yes, we give Aiden breathing treatments with his nebulizer every 4 hours (or so) when he's got a cold that makes him all stuffy and nasally. Yes, we worry about whether we will make it to Christmas without a trip to the doctor or an overnight visit to the hospital for breathing difficulties. Yes, all of these things are a part of our regular, daily lives.

But we don't know anything different. And wishing for anything different is pointless.

Mother Theresa once said: "God doesn't give us anything we can't handle. I just wish he didn't trust me so much".

Sometimes I see the truth in that phrase. Other times, I actually believe it.

I would be lying if I said I didn't wish things could be "easier" for me. For my family. To worry about Ethan's role as a big brother - to wonder if he will always be strong enough to stand up for his brother (if he should need it) - is enough to break your heart. To realize that this is something you are up against as a parent is even more heartbreaking.

Being chosen for this path is humbling. I guess I'm strong. Or something along those lines. I'm certain that I will one day understand how lucky I am to be given this opportunity. But for now, I admit, I am still trying to figure out how I can make my life, and my children's, as normal as possible.

One thing I am sure of - I could sit here and say that some people have it better. I can dwell on the fact that others will never know my journey. Nobody will ever know how hard things have been for me. Well, 1 in 160,000 will, but that's not many. I can imagine how things "might have been", wish that things could have turned out differently, or might have aligned more with my expectations.

But sometimes folks, you just have to realize that you can approach life with the idea that life is always greener on the other side, or you can come to terms and accept the fact that sometimes - the green grass is that which you already stand upon.

It's all how you decide to interpret it.

I'm guessing you can figure out how I have decided to approach it.

This week anyway :)

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My Cup Runneth Over

If you've never seen the movie Hope Floats, you should. It's not only a great movie that emphasizes overcoming obstacles to find the good that lingers right after the storm, it is also the source of two quotes that I absolutely love.

When Gena Rowlands character, Ramona Calvert, tucks her grand-daughter into bed, she says "I love you grandma". It's as if that is the first time she has ever heard those words. She replies, her heart about to burst, "My cup runneth over".

That is how I feel.

Being a parent is AMAZING. I look at Ethan - his tender golden hair curled around his ear (yes he needs a haircut!) - and I am in absolute AWE of the human being that he is. He's smart. He's witty. He's EXHAUSTING. He's imaginative. He's messy. He's EVERYTHING that I would want my child to be and more. He makes my heart whole.

And Aiden - my sweet little guy. He has challenged me in more ways than I would have imagined in my journey that is parenting. He is overcoming obstacles. He IS brave in every sense of the word. He is a little brother that looks up to his big brother more and more each day. And his smile. Seriously? Could there BE ANYTHING cuter?

The other quote from the movie goes something like this: Beginnings are scary. Endings are usually sad. But it's what is in the middle that matters the most.

Giving birth for the first time was scary for sure. The responsibility you are given the second that child enters the world is unlike anything that anyone who is not a parent can ever know. I could be neurotic, but now that I have that responsibility, I often think about what would happen if something were to ever happen to me. What would my kids do? Would Ricky know where Ethan keeps his underwear or what size diapers to buy Aiden? (Yes on both accounts, but come on moms, you still wonder, right?) Yes my friends. Endings are usually sad. That's why I'm going to vow to make the most of the middle.

I want my middle to be FABULOUS. Doctors appointments, surgeries, staring, learning how to teach my children about differences and all. My middle will be good, dammit. Life, you won't stop me. (sticking tongue out now)...(Although speaking of my middle, a little plastic surgery wouldn't hurt...I'm just saying :))

All I need is for Ethan to sit on my foot and wrap his arms around my legs to be my "boot", or to see Aiden's goofy little smile when I come in to get him after his nap. My kids are my middle. I will do them right.

Love. That is something I thought I never knew until I got married.

And then I had kids.

My cup runneth over.

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Friday, December 11, 2009

This exclusive club: proud member since 2008

Having a child with special needs is like being part of an exclusive club. A club where the membership perks are unlike those of the typical "clubs" you imagine in your head.

It is a club that you don't ever dream of joining. There is nothing appealing about it. You don't really think you deserve membership because you don't think you could handle it. So you pray every night that you will never feel what it feels like to be a part of this said club.

But then, at some point - when you learn of your unborn baby's condition, or you give birth to a child you expect to be healthy, and instead is not - you are given a membership card and signed up for the club as if someone has stolen your name and personal information to join a costly subscription without your consent.

It is the strangest form of identity theft.

All of a sudden, you are forced into a society that only an exclusive group will ever understand. You pinch yourself to make sure it is real - more out of shock and disappointment than out of joy and excitement. Your head tells you this is real. You are now a member whether you like it or not. But your heart obviously has a lot of catching up to do.

At first, it is normal to reject this newfound membership. It isn't what you asked for. Or what you expected.

Four and a half years ago Ricky and I got married with stars in our eyes. People told us we looked like Ken and Barbie on our wedding day. We come from good families, we have good morals and values, we love each other. As we came to find out, those things don't keep you from becoming members of this exclusive club.

It is hard to understand how we could be chosen for this path. Sometimes being a good person will make life easy for you. Other times, apparently, it does not work that way.

We have been members of this club for almost two years now. And although you could say that we were definitely disgruntled members at first, given this opportunity against our will, now we have found the bright side. The perks if you will. We wouldn't give up our membership for the world.

Shortly after Aiden was born, we were put in contact with a woman who was a few years ahead of me at the same high school who has lived her life with a craniofacial syndrome similar to Aiden's. We spoke briefly on the phone and she shared some of her life experiences related to her "membership" in this exclusive club. She dealt with her fair share of teasing. She felt like an outsider at times. But in the end, after she gave us a glimpse into how hard her life was at times, I will always remember that she said "I wouldn't change my life if given the chance". As bad as this sounds, I am going to admit that my first reaction was "That's a load of BS." I honestly didn't understand how she could say that. How could she say that if she had the chance to press the rewind button to be born without a craniofacial anomaly, she wouldn't. It did not make any sense to me.

Just 22 months later, I finally understand. It has got to feel something like the way I feel about Aiden. For weeks, months, after he was born I would close my eyes and PRAY that this was all a bad dream. I hurt because I didn't want to be "that family". I hurt because my heart had been so broken - my dreams shattered. Or so I thought.

Becoming a mother has always been my biggest dream. I've always said it is something I was put on this earth to do. When you have a child with special needs, initially you grieve the loss of the "perfect" life you imagined in your head of being a mom. But somewhere along the line, it hit me that it is for that very reason that I was blessed with my Aiden. Nobody could do it better than me. This really is the life that I was meant to have. I just didn't know it at the time.

I can only pray that Aiden will grow up to feel the same way that the woman who shared her story with us felt. To have a child with special needs is a challenge. And the ultimate reward will be to have that child grow up to feel happy with the life they are leading despite the obvious challenges they will face. One with no regrets. Not wanting to change a thing. That will be the true measure of my time here on earth.

So although being a member of this exclusive club is something I would never wish upon anyone, it is, at the same time, ironically, something I am most proud of. We don't have logo emblazoned hats and t-shirts, but you can bet that our members know when we are around each other while out and about. It is an exchange of glances. A knowing smile. The "I know what you are going through" looks that show more empathy than pity when out with our children. It doesn't matter the severity of problems our kids face - you can always tell those that are also part of the club. And without having to say a word, our journeys seep out of our pores unashamedly. Silently, we give each other a mental high-five. Our secret little handshake that only the members of this exclusive club are privileged enough to know.

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Tuesday, December 1, 2009

Holiday Traditions

It's that time of year when twinkling lights from a Christmas tree and the smell of hot apple cider and fresh baked cookies just make everything in the world seem right.

I've been focusing on ways I can make the holidays a special time for our family. In addition to some of the traditions that I grew up with, I'm also wanting to create new ones that our boys will look forward to each year.

Here are some that we will definitely be adopting:

Countdown to Christmas ~
My boys love books. Always have. So what better way to count down the days until the jolly old elf's arrival. After spending way too much money on 23 different holiday-themed books (obviously an oversight on my part when I decided this was a good idea...I mean really...even at just $4.99 a pop, multiply that by 23 and that's a heck of a lot of money!), I wrapped each one individually and put them in a tin bucket on the fireplace. Each night, we will unwrap a book and read it together as a family. The last one, for Christmas Eve, will be what else "Twas' The Night Before Christmas".

Matching jammies ~ Yes, my boys will be those kids. The ones whose mom makes them wear coordinating Christmas pajamas each and every year. They will be getting them from St. Nick. And they will like it.

Christmas cookies and holiday cheer ~
This is one I grew up with and hope to continue with my own family. We used to make those little green blobs of cornflakes, marshmallows and red sprinkles also known as "holly cookies". Mmmmmm. And I cannot resist inhaling multiple "kiss cookies" around the month of December. As much as I love them, you would think I would make them year round, but I don't. I save the sugary, chocolatey goodness for the holidays. I usually get so excited to make them that I make WAY too many - which works out perfectly since I enjoy bringing a plate of homemade cookies to our neighbors around Christmastime.

Irish soad bread ~
My late grandmother's original recipe + golden raisins + a bunch of other stuff = a warm little slice of heaven every Christmas morning. My husband loves it too. My kids, not so much. But I can remember not being very fond of it when I was little either. They'll come around. And if they don't...oh well. More for me.

The gift of giving ~
In our day and age it is easy to get wrapped up in material things. Especially around the holidays when the media is infiltrating our brains with the season's "must haves" and "can't live withouts". Even at the tender age of 2, Ethan has a very specific request for Santa...he wants the Handy Manny tool bench. But Santa doesn't think that a 2 year old needs a gift that costs $89.99 just because Disney decided to air the commercial over and over again in the mornings when Ethan so happens to be watching their shows.

We know we are very fortunate to be able to put away some money each year to spend on our loved ones for Christmas gifts. We also know that not everyone is as fortunate. First and foremost, we want to teach our kids that the holiday should be more about Christ's birth than it should be about toys under the tree. At the same time, we want to instill in them the gift of giving. Every year we will go through the toys in our ever so stocked toy room (and family room, and the kids bedrooms...) and have them pick several items that we will donate to a charity that gives them to families who may not be able to afford holiday shopping. I want to be able to provide everything I can and more to my children. They deserve it. But other kids are no less deserving. And my kids will know that. And be humble about what they have.

Traditions are those special things that you carry on in your life year after year. They help you remember the good times. The warm and fuzzy moments that are so wonderful that you want to pass on that same warm and fuzzy feeling to your own family. I look forward to developing new traditions - not just at Christmas - but each and every day.

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Life is good


It's been a while since I've updated everyone about the boys - so I would like to let everyone know that all is well in the Skees' house. :)

Ethan is doing GREAT at preschool (much to my relief). In fact, the teachers seem to have really taken a liking to him. And vice versa. Every time I pick him up he runs to Ms. Kathleen and Ms. Jennifer and gives them a big ol' smackaroo on the lips (yeah, um, we're discussing H1N1 with him and why we should only kiss our family on the lips). He proudly picks up his scribbly artwork - masterpieces I tell you - and skips out of the room shouting 'I love yous' to everyone by name.

And while we are on the topic of preschool - Ethan wore underwear today! Granted it is only 2.5 hours long, I still sent 2 changes of pants, 2 pair of clean underwear and 2 diapers *justincase*. Much to my surprise he was in the same outfit I dropped him off in when I picked him up! No accidents! Ms. Kathleen said that while playing in the gym, Ethan stopped suddenly and announced "I need to go poop!" Hopefully this means we are on our last box of Pampers. Does anyone have any idea how much having two kids in diapers costs? Like, a whole lot.

On the Aiden front, things are just as good. Besides the few bonks to his head from his loving and ever so gentle brother (sarcasm on the last part there) which have resulted in some bumps ranging in size from peas to golf balls - all of the bluish color - he is getting along great. Therapies are going well. We're all staying relatively healthy. There really isn't anything else we could ask for.

We have a lot to look forward to in the coming months. The Christmas holiday, a trip to Dallas that isn't surgery related, a much needed family vacation to Florida at the end of January and a visit to Disney! Followed by Aiden's 2nd birthday in February and Ethan turning 3 in March.

As I was saying...life is good.

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Thursday, November 26, 2009

Who I Am Today

Let's face it, my journey into motherhood hasn't been an easy one. I've never asked for pity, condolences or special treatment. I hardly ever ask for help (even though I know I should). I take pride in the fact that I've been able to understand that this life - this crazy, chaotic, unlike-anything-I'd-imagined life - is my "normal". I'm making the most of it.

***Patting myself on back...***

With no disrespect intended, I want to answer the question I get asked most often:

(Q) How do you do it? I'm not sure I could ever be as strong as you.

(A) I don't know how I do it, I just do...I'm just doing the job that I was given. To be a mom. To love my kids. To do whatever it takes to make sure they are given the best life possible. Yes, my job might include things that yours doesn't, like overseeing weekly therapies, waiting helplessly in a hospital waiting room while my child undergoes # (fill in the blank) surgery and wondering every day why my child/my family was chosen for this journey. But the fact of the matter is that I'm no super-hero. I'm just doing my job. You would be able to do it to. You'd have to. Because like me, you too would do whatever it takes.

With that said, the fact that Ricky and I have become even stronger in spite of the challenges we've met during these past 2 years is not lost on me. I thank God every night for helping me find my best friend. For knowing that Ricky was just the person I was meant to be with and experience life's ups and downs with. Having him as my #1 supporter is definitely my saving grace.

But I also do not go a single day without thanking God for my parents. They are THE reason I am who I am today.

I have been blessed with the gift of telling stories. With the gift of being able to put my thoughts into words and sharing them with whomever is interested in reading. My father has always been a very gifted speaker and story-teller. I can remember sitting indian-style in the living room by the glow of the Christmas tree each year and being captivated by my dad's reciting of "Twas' the Night Before Christmas". I heard the words...but I stared intently at his facial expressions, mesmerized more by his pursed lips and wide eyes at all the right times. It was from him I learned how to engage an audience and make them want more. Enunciation. Speaking slowly in front of an audience. Animation. Heart. Those are some of the many qualities I've inherited from him - and for that I am thankful.

My mother is a little less "show" and a lot more "real". I credit her for my "tell-it-like-it-is" trait. I learned quickly to think twice before asking for her opinion if my intentions were only to get someone to nod in agreement with whatever my opinion was. She is too real for that. She'll be the one to tell you that she really doesn't like the high-lights you just spent $100 on at the salon or that she doesn't particularly care for your best friend. Not in that "rain on your parade" type way. In that "mom is usually right" type way. And yep, she usually is right. But even when she's not, you still respect the fact that she doesn't try to dance around the truth. Everyone needs someone in their life who will give it to you straight. For me, my mom is that person. Likewise, my friends know that I'm that person. They respect me for it. And that's why we are still friends today. So I am proud to have gotten this personality-trait from my morethanawesome mom.

The truth is, I am able to do my job and handle the challenges I've been given in part because of the very characteristics I've described above. Writing has been an outlet for me. Keeping people informed about Aiden's surgeries every step of the way and also letting people in on the fun, stressfree times we share as a family is therapeutic for me. Sometimes when I can't find the right words in person, I'm able to find them through my writing.

Similarly, hearing the straight truth and expecting nothing less is an important aspect of caring for a child with special medical needs. I don't want a doctor to sugar coat things just because they think I won't understand the terms or won't be able to handle it. I have no problem communicating concerns, addressing inconsistencies, or questioning a treatment. Once doctors realize that I'm 'that kind of parent', I feel they start respecting my position as not only the one bearing the emotional brunt of things regarding Aiden, but also the type who can and will advocate for his best needs.

Today, I'm thankful for my family. My husband, who continues to be my pillar of strength. My boys, who teach me more about life than anyone. And my parents. Without their constant and spot on guidance, without their unique and admirable traits that I've been lucky enough to inherit - I would not be who I am today. I'm doing my job because it's the one I've been given. I'm doing it well because I learned how from them.

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Wednesday, November 25, 2009

Check her out - My Bluegrass Baby Photo


My friend from high school, Heather (Boles) Wolff, has started her own photography business. In addition to the photo side of things, she has also launched the My Bluegrass Baby website/blog and is doing her first giveaway.

Heather takes amazing pictures of children and families - and you can see for yourself by clicking here. ...Although we have yet to get together for a photo shoot with our family! In due time...

Why don't you visit her site and see if she might be able to capture some of your special moments?

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Friday, November 20, 2009

What a difference a year makes

Last year, just before Thanksgiving, Ricky, Aiden and I were in Dallas preparing for our baby's first surgery.

Eating turkey and spending time with family was not exactly on the forefront of our minds. Doctors appointments, fear of putting our 9 month old under anesthesia and forever changing our baby the way God made him was.

Once the surgery was over and we returned home, Thanksgiving forever held new meaning for our family.

After several weeks of casts, cast removal, dressing changes and healing, we then had to focus on making it through Christmas and the entire month of January keeping Aiden healthy enough for his next surgery in February. And although we did our best to "get into the holiday spirit" for the kids, it certainly had a different feel. The tree was up. The lights were strung. The picture with Santa was taken. But behind all the "ho-ho-ho's" were two very scared parents.

We made it through the next surgery without a hitch - and our little boy, who turned 1 just a week before the operation, was given the very best birthday present imaginable...10 fingers and 10 toes!

Then we again faced the casts, cast removal and dressing changes. And again we avoided public places, kept the kids from being around other family members if they had so much as a sniffle and fretted about the next sugery, scheduled for May.

While May is usually my favorite time of year - the buds in full bloom on the trees, the air crisp and clean, the flowers blossoming - this past May was less than enjoyable. Aiden's allergies flared and when we touched down in Dallas a few days prior to his head surgery, his breathing was labored and something wasn't right. We anxiously awaited word on whether he would be healthy enough for his operation. The thought of having to cancel it and go through the waiting and stress another time around was awful. But then thinking of doing the surgery and having something go wrong because he wasn't 100% was gut-wrenching. May was definitely not turning out like we had hoped.

After discussing with all of the doctors on Aiden's team, the decision was made to move ahead with the cranial vault surgery. We prayed. We waited. We held each other in the waiting room. And thankfully, our baby made it through without issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fast forward to now. It is a week before Thanksgiving once again. Aiden's hands, feet, and head are healed. He's gotten over the pain of the surgeries. He's using his hands and walking on perfect little feet. The swelling is gone. The incisions are fading beautifully. But, as parents, there is still much healing to be done for our hearts. We will never forget the feeling of handing our baby over 3 times in 6 months to be put under anesthesia. We won't soon forget the worry, the stress, of waiting for the surgeon to come out of the OR and let us know that everything is okay.

This year, however, we are so very thankful that we will get to experience the joy of the holiday season as it is meant to be felt. We'll fill up on turkey, put our healthy babies to bed and think ahead a month, not about the next surgery, but about the wonder of Christmas and how much we love this time of year.

What a difference a year makes.

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Wednesday, November 11, 2009

White water rafting

I haven't been sleeping very well lately. I have been having lots of dreams - the kind that you remember in the morning. The kind that make you realize you are not getting to the point of sleep where you are truly relaxed.

Last night I had a dream about whitewater rafting. I've never in my life had a dream about whitewater rafting - that I can remember anyway.

I awoke around 4:30 am with the vivid images still fresh on my mind.

I've always been one to look for meaning in ordinary everyday things. Things like Ethan throwing a 5 minute fit in the car before leaving NKY a few weeks ago, then pulling up to a serious accident on I-71 that looked as if we had just missed it by 5 minutes. Or even something more simple like seeing a shooting star in the night sky.

So with this unusal dream keeping me awake, I had to wonder if it meant something. I grabbed my iPhone from my nightstand and typed into my google browser: dream about white water rafting.

The first link I clicked said..."To dream about white water rafting signifies that after going through some turbulent times, your sadness and pain will slowly disappear."

Coincidence? Or is my mind trying to tell me that I'm approaching The Upward Turn.

Either way, upon reading that I got little goosebumps up my arms. And then I fell fast asleep.

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Tuesday, November 10, 2009

"Now that's what I'm talkin' about!"

With every passing month I find myself saying "this is the age I like the best" - talking about my kids of course.

It was fun when they were little enough to sleep snugly in a swing for a nap, then wake with a huge smile ready to play. Then it was fun when they started rolling, scooting, sitting, walking. Each new milestone was a reason to be proud. And now, their personalities are in full force. They are talking, belly laughing uncontrollably when I do something funny, and really living life to the fullest.

The talking part has been so enjoyable for us as parents. It really is true - kids say the darnedest things! You never know what is going to come out of Ethan's mouth (and I honestly sometimes have no idea where he learns the stuff he says!)

For instance, over the past few weeks he's been known to say:

"You need to go out and close the door. I need my privacy." (when going pee-pee on the potty)

"Mommy, you're so pretty." (right before he asks me for something from his goody-jar of Halloween candy)

and "I look like Daddy because I'm not a girl" (when asked who he looks like, Mommy or Daddy)

Last weekend, Ricky took Ethan to the park while Aiden and I attended a baby shower. Afterwards Ricky was laughing so hard telling me the things Ethan had said that day. While Ricky was pushing him on the swings, going higher and higher, Ethan shouted "Now that's what I'm talkin' about!" then followed by "Daddy, you are cracking me up!"

Later, when he fell off the playground equipment into the mulch he looked up slowly and said "It's all part of the plan!"

And finally, he proclaimed "I love playing at this park. It is beautiful outside!"

At just 2 years old, he sure does know how to express himself pretty well wouldn't you say? As much as he sometimes makes me want to pull my hair out with his ornery behavior, he also manages to make me laugh just as much (if not more). He is one smart kiddo with a larger than life personality. And so far, this is my favorite age. :)

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Monday, November 9, 2009

On becoming "that family"

After Aiden was born, one of the things that weighed heavily on my mind was the heartbreaking thought of becoming "that family".

You know,
"That family that has the child with a syndrome."
"That family that must be so stressed and worried and down all the time."
"That family others feel sorry for."

I cried about a lot during the first several months of Aiden's life. But I couldn't shake this. It hurt me to my core. I never for a second thought about giving Aiden up - but in those first few months adjusting to our new life, my mind couldn't stop wishing things were different. I didn't want to be "that family". It just wasn't fair.

Now, almost 21 months later, although I still cry from time to time, and still grieve the life that I had imagined in my head, I have also embraced the idea of being "that family".

You know,
"That family that loves each other so much, they can get through anything."
"That family that has two beautiful children - both with very different and very special abilities."
"That family that people are inspired by."

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