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!)

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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? :)
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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 :)

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.

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.

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.

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.

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.

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?

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.

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.

"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. :)

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."

Blessed

When I started this blog, it was a way to keep my family and friends informed about our family. Mostly because I live away from all of them and then even moreso because of all of Aiden's medical issues.

I've always loved to write. It doesn't come easy all of the time, just when it matters. It is something that I started doing as a child and have continued to do through the years. When I was ten, I had aspirations of putting together a neighborhood newspaper - actually going so far as to recruit some of my friends in our cul-de-sac to form a committee and develop a gameplan. We would write about the goings-on on our street. We would sponsor and plan a neighborhood carnival. I was going to be the editor-in-chief.

As I got older, my writing evolved into something else. It became a bigger part of me. I allowed myself to put pen to paper and capture my feelings. I kept journals, but usually ended up discarding one for another that had a prettier cover. Then, being the organizational nut that I am, I'd re-write (yes - re-write) each previous entry into the new one.

I began reading some of my entries to close friends. I enjoyed sharing what I had written, even if I did feel a little vulnerable. I didn't realize it at the time, but it was therapeutic for me. I could write it, share it and not feel judged.

Somewhere around the time I had kids - I learned about the "blogosphere". There is something very exhilarating about writing a blog. You can easily type a post, edit it before publishing, and delete it later if you realize you didn't want to share it after all.

This blog started as a way to keep my friends and family informed about ours. And it has become so much more.

It's my history. It's my future. It's my therapy.

When I wrote "when your world falls apart", I sat at my laptop at midnight typing continuously, not even thinking about who might read what is obviously a very personal situation. I had to get it out there. It felt good to share that part of my story.

To say that I've been completely blown away by the responses I've received as a result would be an understatement. I had no idea that what I was feeling would resonate with so many people. People who had gone through something similar - having a child with a disability, a difference, a medical condition. Others who have been following our story from the day Aiden was born - who have no tie to us personally, but just want to be able to offer their support and prayers along the way. Some who care so deeply about us, me, my boys, my family, that they have previously not known what to say or how to help for fear of saying something "wrong" or inappropriate. And even more who although they may not ever know what our journey is, can relate in some other way - and reading that post encouraged them to open up to me by sharing their own thoughts, fears, emotions.

I appreciate whole-heartedly the concern that came my way after posting that entry. The phone calls, emails, messages, etc. mean the world to me. People finally understood that I was ready to talk about it openly and candidly. They felt comfortable doing so too. I hope to continue to be open about our journey. To let people know that although it may appear to be easy for us and it may appear that we are strong on the outside, no amount of strength can ever ease the pain of knowing your child will face so many surgeries, appointments, and uncertainties throughout his life.

So thank you to all who take the time to read about our family. Thank you for the prayers. Thank you for being there to listen (or in this case, read). It means a lot to me that so many people continue to care.

My little "Dose of Humor"

I submitted an old blog post to the weekly column "A Dose of Humor" that is featured on the 5 Minutes for Parenting blog, and guess what...they chose mine for this weeks post! Click on the logo to find out which story they found worthy of a little chuckle.

when your world falls apart

There is a fog that I've been fighting for a few weeks, months, not exactly sure. It's crept up slowly but steadily until it's presence can no longer be passed off as something I can easily wipe away each morning and focus fully and clearly on my day.

I'm tired. Exhausted. Emotionally and physically. It is a constant struggle for me to get through each day with my head held high and a positive attitude in my pocket. I am okay - in the sense that you may be wondering about me now. I am okay - in the broadest sense of the term. But yet I'm still hurting. And fumbling through the grief, fears and worry that became a part of my life a little less than two years ago.

Sometimes I catch a glimpse of myself in my wedding photo hanging on the wall in my family room. I find myself staring at it, at the picture of me - carefree and hopeful with my hair swept off my shoulders and a butterfly (the world) in my hand. I looked beautiful. And I'm not saying this to sound conceited. I'm saying it because I felt that way. I was at my best.

I hate so much that looking at those pictures from one of the happiest days of my life often makes me cry. I see the look in my eyes - the pure and unknowing strength and confidence to take on whatever life might possibly throw my way - and I think about where I am now, what I've endured, how naive I was to think that life could always be that innocent.

I spent 4.5 weeks on bedrest when I was pregnant with Ethan. A little longer during my pregnancy with Aiden. And each and every day from the moment I saw the two pink lines (or in Aiden's case the digital "Pregnant"), I prayed for a healthy child. 'Do you want a boy or a girl?' people would so predictably ask in the supermarket, at the doctors office, at work. 'It doesn't matter to me,' I'd reply. 'As long as it is healthy'.

The night Aiden was born I was unforgivingly introduced to a world that was so foreign to me. Medical terms and jargon that had no place in my life nanoseconds before his arrival became commonplace.

Anomoly. Craniofacial. Craniosynostosis. Syndactyly.

Words that once carried no meaning now seep out in everyday conversations. The night Aiden was born, for the first time, I fully understood the phrase I had been known to dramatically shout to my parents during my teenage years when I couldn't go on spring break or stay out past midnight. "Life is so unfair". Little did I know.

Surprisingly, I was able to hold it all together quite well during the months after Aiden was born. In fact it never really crossed my mind to become depressed or to wallow in my pity. I was resolute. Determined. Steadfast in my thinking that a positive attitude would help me get through it all and that in itself would benefit my son to the greatest degree. It took me a long time to realize that during that time my whole self was on auto-pilot. I didn't think about being depressed because I didn't have time to. There were doctors appointments, surgeries, geneticists, tests. But no time to deal with what was going on all around me. I was strong. Still am. But with several months of not having to worry about every runny nose and whether or not it will stand in the way of my little boy having his next operation to give him separated fingers and toes, I now have the time to turn my thoughts on other things. Like being depressed.

I guess you could say I am one of the lucky ones. I recognize that with all the ways my life has changed over the past two years I am pretty high up on the risk list for becoming depressed. So when I began crying more that I smiled and having stress-related chest pain that no healthy 28 year old should have, I pretty quickly self-diagnosed the fact that I might be battling more than just a case of the "blues".

When your world falls apart, no matter what brings it about - the loss of a loved one, a miscarriage, a divorce, a diagnosis - it is pretty common to experience the seven stages of grief:

1. Shock and denial
2. Pain and guilt
3. Anger and bargaining
4. "Depression", reflecting and loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

I seemed to have teetered through the stages and even "moved on" to the next, only to re-experience one of them once again several months later.

Obviously not knowing about Aiden's condition provided the shock factor when he was born. And denial wasn't too far behind, although I think I "accepted" his diagnosis more quickly than any amount of denial lasted. The pain and guilt is a real stickler. I feel pain everyday for what Aiden has to go through. And any mother will understand when I say that no matter if its a stubbed toe, a splinter or in my case, an extremely rare genetic disorder (ha!) there is a level of guilt that only a mother can experience. It somehow feels like your fault. Even when the logic in your head and every bone in your body knows it isn't. You find yourself saying 'If only I'd...' this or that 'then maybe this wouldn't have happened.'

That led me right into the anger and bargaining stage. During my pregnancies, I ate right (granted I understand that my craving for Sour Patch Kids was probably not super healthy). I started taking pre-natal vitamins several months before I knew we would try to become pregnant (and with Ethan being only 3 months old when I got pregnant with Aiden, I hadn't even stopped taking them yet)! I read every book. I followed every piece of advice. I stayed away from deli meat and stopped drinking caffeine.

I. Did. Everything. Right.

One could say that thinking about that made me angry. Very angry.

I doubted God. I stopped going to church. I found extreme irony in the fact that our parish priest couldn't console us during his visit to our hospital room when Aiden was born because I was so angry at all things religious that it only made sense that this wise man of God couldn't find the words. That proved it. It had to all be a farce. God musn't exist.

For the next several months I think I spent most of the time going back and forth between stages two and three. Then I quickly entered stage four and have probably spent more time there than I even realize or care to admit. However I do feel that I'm slowly approaching the "upward turn".

When you think of grief in stages, it gives you a roadmap that helps you understand your feelings every step of the way. When my world fell apart, I somehow mustered up the strength to ignore my grief and get through some of the most difficult life experiences I hope to ever encounter. But I've learned that it is only after weathering the storm that you finally start to assess the damage. I'm no longer in shock. I don't deny what has been chosen for me and my family. Guilt, I'm done with. I'm through blaming myself. But pain, anger, I'm not sure that will ever subside.

Aiden has proven so many of our fears wrong. His future is much brighter than I ever would have thought when I was just starting to digest the medical information given to me after his birth. I am more than hopeful. I am proud.

I am happy. I love my boys more than life itself and the love that my husband and I share is immeasurable. I am very blessed. And I do know that God does exist and he does have a plan for me, for Aiden, for my family.

It is for those reasons that I am allowing myself to move through each stage of grief rather than fight it. I have no doubt that I will get through this rough patch and will start to see the rainbow - it's just a matter of time. Because if there is one thing I've learned from my family, it's that when your world falls apart, you just have to pick up the pieces, put them all back together, and move on. With their help of course. :)

Our next trip to Dallas

Aiden and I will be heading back to Dallas January 4th for his 1st annual MRI, sleep study and check-up appointments with the various doctors on the team at Medical City.

We're hopeful that all tests will prove normal, as we haven't had any major issues or concerns since his last surgery in May.

The MRI will check for the presence of any pressure or swelling in the brain. The sleep study evaluates his breathing (oxygenation, apnea episodes) and general sleep quality. The other appointments will follow the growth of his head, his developmental progress and the healing process from his previous surgeries on his hands, feet and head.

I'm making the trip alone this time, but I will have my "family away from home", the Gorman's, to spend time with. I will stay the first night at the hospital with Aiden for the sleep study, then we will both be spending the second night with April, Tate and their kids John and Rory Cate. Now that Aiden is walking, it should be fun to see the kids play together!

My Sunday alarm clock

Early this morning I hear Ethan's door fling open and the pitter patter of two tiny feet running across the hall into our bedroom. He climbs up and squeezes in between us. He snuggles up next to me. He whispers into my ear "Mommy, you're beautiful". I melted.

Best wake-up call ever.

Little Fire Big Heart update

The date is set, the location has been paid for...now we need YOUR help!!!!

The LFBH committee is getting ready to send out sponsorship requests to many local and national companies. If you or your employer would be interested in learning how they may be able to help support this important cause, PLEASE PLEASE let me know. My email address is tarynskees@gmail.com.

We are hoping to get atleast 2 or 3 major sponsors that will help us reach our goal of raising $10k for Children's Craniofacial Association. I have all of the information organized into sponsorship packets that I can send to you at your request. No amount is too small!

If you/your company are unable to sponsor, please consider what you may be able to contribute to the silent auction. Gift cards, unique homemade items, sports memorabilia, sporting/entertainment tickets, merchandise items and/or baskets, services, etc. Every donation can be tax deductible - so show me what you've got!

We're hoping to make the first annual Little Fire Big Heart event super successful and we can't do it without the help of our friends and loved ones.

Visit www.littlefirebigheart.com for more details! Hope to see you all there next September!

P.S. - thank you to those who have already given to our cause through ticket registrations and FirstGiving donations! It means so much to our family :)

Moving right along

Aiden is now 20 months old. With his physical differences and surgery down-time, he continues to develop at his own pace. A little delayed, but developing normally nonetheless.

He army crawled and we were happy, but we thought we'd never see the day he would crawl on all fours.

He crawled on all fours and we were happy, but we thought we'd never see the day he would pull to stand.

He pulled to stand and we were happy, but we thought we'd never see the day he would take an unassisted step.

Now he's walking like a champ and pumping his little legs to almost running speeds, climbing up the steps to the second floor and hoisting himself onto the couches.

We started therapies with First Steps when Aiden was just a few months old. Mary Ann, Jennifer and Stuti have all been a part of our lives for a little more than a year now.

Mary Ann, his physical therapist, comes once a week to work on gross motor skills (started with sitting up, rolling over, then progressed to crawling, walking, stairs, etc.). It's apparent that she's done her job well. We are very pleased with his progress. In fact, now that he's walking, I'm not quite sure how much longer we will need to continue this therapy.

Stuti, his occupational therapist, visits Aiden twice weekly. She helps to develop his fine motor skills through interactive play, oral motor exercises and self-feeding work. Right now we are working a lot with strengthening his mouth muscles with activities like sipping applesauce through a straw and massaging his cheeks and tongue with an electric toothbrush. Things I never would have thought of on my own. That's why they're the professionals. And that's why Aiden is thriving.

Jennifer is Aiden's developmental therapist. Or I should say "was". As of this past week, I'm happy to announce that it was decided that because of Aiden's progress and accomplishments in the last few months, developmental therapy was no longer deemed necessary. This was a hard decision to make - considering that we want to make sure we are doing everything possible to help Aiden in the long run. But the many initial worries I had about Aiden's cognitive development have been put to rest lately. He's doing everything a child his age should be doing (give or take - some things he still needs to learn, other things he's ahead of schedule).

Although we are ending developmental therapy, I've decided that speech therapy is the next step. Aiden's vocabulary is extensive. It includes over 15 signs, a handful of words, he imitates dozens more and understands almost everything we say. Now I want to address the fact that he is not vocalizing words very often and when he does, not clearly or accurately for the most part. Kids with Apert Syndrome typically have speech delays for a number of reasons, including the developmental delays from surgeries and hospital stays, the anatomical differences in the retrusion of the midface, high/arched palattes, etc. I'm confident that with the extra help of a speech therapist, Aiden will progress in this area just as he has everything else.

So, needless to say we are extremely proud parents. And we are extremely grateful for the help he has received along the way.

In summing up Aiden's achievements, it reminds me just how lucky we are to have such a strong support system of dear friends and family in our lives. We are truly blessed. Aiden is proof.

PS - And of course, Ethan is a blessing as well. He's smart, affectionate, energetic and...all boy. Here's proof. I Have no doubt that he will be an excellent role model for Aiden :)

Making Lemonade

So yesterday I read a comment on one of my blog posts from a friend of a friend in Florida who nominated me and More Skees Please for a Lemonade Award. I didn't know what it was until she sent it, but I am quite honored that she did.

The Lemonade Award is given to bloggers who show a positive attitude, gratitude and a willingness to share their ideas, support and online friendship. In other words, people who make lemonade when they get lemons!

The rules of the award:

1. Put the Lemonade logo on your blog within your post
2. Nominate at least 10 blogs with great attitude or gratitude
3. Link the nominees within your post
4. Let the nominees know that they received this award by commenting on their blog
5. Share the love and link to the person from whom you received this award

So, without further ado...



Here are my 10 blog choices (in no particular order):

- All Access Pass to Jack
- The Tater Tot
- Berryman Berryman
- The Buzz on Izzy
- The Dowd 4
- The Spohrs are Multiplying
- The Life of Brian
- The Rast Family
- Sids Awesome Adventure
- Super Sanborn Family

The above choices were pretty easy for me. All of them are inspiring. Many of them are other families with a child that has Apert Syndrome, like Aiden. Without their kind words, nudges of optimism and friendly advice over the past 20 months, I don't think my family would be where we are today. Others are friends and/or acquaintances that simply know the burden of raising a child with "special needs" and nurturing a family that doesn't dwell on that fact. And a few are even people I have never met or introduced myself to, but to which their blogs I have stumbled upon through others links and continue to follow their journey because their story has captured my heart and reeled me in.

Each one of the links above are a daily inspiration to me. We all have very different journeys. Our lives are no more difficult than the next - we're all doing the best we can. We're all making lemonade from the lemons we are given. We aren't super heros. It's just the only thing we know how to do.

Thanks so much Carly for the nomination! You are one of those amazing inspirations to our family. Your girls are just beautiful and they are very lucky to have you! :) Keep up the good work!

It's official - we really ARE great parents!

The other day Ricky told Ethan that he would get two special prizes if he started going (pardon my mommy talk) "pee pee and poo poo" on the potty. (Come on, don't tell me you haven't resorted to bribery during the potty-training process).

Then, out of nowhere, Ethan went up to Ricky, stroked his cheek and said "Stank you! You are a good daddy!" (if you couldn't figure it out, "stank you" is Ethan speak for "thank you").

And today, I don't even recall what I did to deserve it, but we were in the kitchen and I did something that must have been pretty cool and Ethan wrapped his arms around my legs and said "You are GREAT"!

There are many moments in this parenting journey that I want to pull my hair out, mix a drink before 5pm or both, but then there are the moments that make your heart smile so big. All of the doubting I do on a daily basis (you know, "am I really cut out for this?" "are my kids going to be normal?", etc. etc.) are wiped away in that single moment.

In what other position do you consider the praise from a 2 year old to be exactly the reassurance that you need to know you are doing a good job? I love it.

And I will remind him of these very occasions when he's a bratty teenager saying he hates us. :)

Ready for a slow down...

Wow - it's been a crazy busy couple of months for our family. Between attending weddings, being in weddings, taking trips for business and pleasure, and visiting out of town family and friends, we haven't been at home for an entire weekend since...are you ready for it...JULY!

So with most of those things x'ed off our busy calendar and not a whole lot on the horizon, we're ready to settle in and have some down time sipping cider on the couch and watching our favorite shows.

Don't get me wrong, I have thoroughly enjoyed every minute of our packed schedule. It's just that we were starting to get a little frayed. With the holidays just around the corner (umm hello, since when do stores starting putting out Christmas decor before HALLOWEEN???), this little rest in activity couldn't have come at a better time.

I'm exhausted just thinking about all of the things we've done let alone the task of blogging about each one of them. So instead I'll just inundate you with pictures recapping it all.

Enjoy!

Angie's bachelorette party (my cousin from Chicago)
Angie's wedding
Alexa's Appeal (CCA benefit we attended in California)
Jen's bachelorette party and shower (my friend from college)
Jen's wedding
Kinman Farm with the kids

PS - when I get all my ducks in a row (unpacked from all trips, mountain of laundry sorted, etc.) I will post updates about the kiddos :)

To Make a Long Story Short

I have been so busy lately - which for blogging presents a ton of things to write about. However because the pace of things hasn't yet slowed down (and won't for another few weeks), I will sum up some of the "main things" from the past couple days/weeks rather than drag it all out into a big long post. Because it would be LONG.

Here are some tidbits:
  1. This is freshest on my brain, so I have to share...I got an iPhone for my birthday!!! I turn 28 on Monday (for the first time in my life I feel old!) and my husband surprised me with my early bday gift this afternoon. He came home from work, snuck the phone into my purse as we were coming inside from playing in the awesome fall weather, and had the ringtone set to the Happy Birthday song. He called it from his phone. I had NO IDEA where that song was coming from. As I made it closer to my purse on the kitchen table, it just didn't process in my mind that the song could have been coming from my purse because I was SURE that I had nothing in there that would sing Happy Birthday. Finally, I opened it to uncover the beautiful phone that I've been eyeing for many many months. I WAS 100% SURPRISED. And 100% happy. It is a bit out of our budget right now (especially since we have to pay a contract termination fee for T-Mobile to switch to ATT), but Ricky always has a way of making things happen. He knew how much I wanted this phone (and the internet on my phone) so he had everyone in his family and my parents go in on the gift to cover all the fees - which in and of itself are more than the phone even costs. With his work discount, the monthly cost is only a few dollars more than the one I'm currently on with T-Mobile WITH NO INTERNET. I'm so pumped. Now I can blog on the run, check in on Facebook, and actually use GPS when I'm lost in the middle of Sacramento (as I was just last week). :)

  2. I went to Sacramento, Modesto, Los Gatos, Santa Cruz and San Jose last week. It was AWESOME. We attended Alexa's Appeal hosted by the Rast family who has a child with Craniosynostosis, just one of the things that Aiden has endured as part of his Apert Syndrome. They did a phenomenal (that's for you Ricky) job putting it all together. I was honored to have Aiden be a part of the message that they were sharing with the 150 or so guests that came to support CCA. Everything from the food, raffle, silent auction, and comedian were just excellent. The video Denise put together herself was absolutely amazing. I want to do something similar for Little Fire Big Heart next year - but I doubt I will even be able to come close to the quality that Denise's video was. If you're interested, click here for the link (you will need to download the free video software and will need about 25 minutes to see from start to finish).

  3. I attempted to see a movie by myself for the first time ever while in Sacramento. But got up and asked for my money back when I got to the creepy, damp, basement theater to watch "Sorority Row" (I know, I know, don't even comment) because it was only me and a fifty-ish man with a duffle bag in the entire room. I thought it was strange so I decided to trust my instincts and get out of there. I hope he enjoyed it!

  4. AIDEN IS WALKING!! Yes he is 19 months old but so what. This is a milestone that we are probably 10 times more proud of than when Ethan started walking. He's had his chips stacked against him from day one and yet he continues to amaze us each and every day in his very own way. We couldn't be more ecstatic!

  5. Did I say I got an iPhone for my birthday????

  6. And speaking of birthday, I am officially starting to feel old. Aside from the fact that I find myself scrutinizing my complexion in the mirror on a daily basis (which now doesn't only have the stubborn little blemishes on my chin that I had as a teenager, but also includes MANY more fine lines and wrinkles than I thought I would see while still in my 20s). I took my niece to her gymnastics class the other day and began to reminisce about the days when I was a competitive gymnast at the very same gym. I did the math and literally gasped out loud when I said it again in my head: "It's been 20 years...TWENTY YEARS...since I was a gymnast". I'm not a math person so I began recalculating it to make sure I wasn't making a mistake. But I wasn't. TWENTY YEARS. Ugh.

  7. I guess that statistic would make sense considering that my TEN YEAR high school reunion is tomorrow. Why do I have butterflies? I mean I'm married and have kids. Yet I am getting butterflies about seeing people I haven't been friends with in TEN YEARS (unless you count Facebook - but we all know that being "friends" on Facebook doesn't necessarily mean much). I recently saw a Facebook group that was called "If we're friends on Facebook, we should atleast acknowledge eachother when we see one another in person". LOL.

  8. Considering where I was 10 years ago, and even 20 years ago for that matter, and although I may still have some insecurities, some fears about the future and some things about myself that I'd like to change (that 10 pounds I was going to lose before my 10 year reunion never happened...) let it be known that I am madly in love with my handsome husband and my two little boys are my world. Some may think I was dealt a crappy hand when Aiden was born with his condition. Yeah, it kinda sucked, I'm not gonna lie. But my life, to make a long story short, is still nothing less than amazing.

Preschool: Day 3

I learned a very important lesson today with regards to taking Ethan to preschool.

Don't go in the front door and pass by the "Kid Watch" room that has a slide in it. Choose the side door instead.

Ethan insisted on going down the slide before he would even entertain the idea of heading to the preschool room. After all reasoning failed, I ended up talking the Kid Watch employees into letting him just run in to go down the slide one time - with the agreement that he would then go to Preschool.

Yeah, that didn't work out too well.

We made it back to Preschool, but I then battled with my very reluctant and usually not shy two year old during circle time and learning about the letter "B". All of this while also keeping tabs on Aiden. I would get Ethan settled on his spot on the rug and try to tip-toe out of the room, but not two seconds later Ethan woud come running out sobbing.

I'm second guessing this whole Preschool thing. Both Ethan's readiness and also choosing the YMCA for this adventure. I really do think Ethan may have been just having one of those days. Maybe something scared him about returning to Preschool (um, I don't know, maybe the fact that he got in trouble on the 2nd day of class).

I'm planning on trying it again on Thursday. But I will also be getting there first thing to discuss some of my concerns with Ms. Kathleen. First of all - the Preschool room is near the back of the building. If you enter from the front, you pass the front desk and go down a long hallway. You then go through 2 double doors into the classroom. Doors that my 2 year old can open on his own. I know locking them might be a fire hazard, but shouldn't there be something keeping the kids from getting out of the room? Not to mention that there is an exit to the parking lot just outside the Preschool classroom. Each time I tried to sneak out of there this morning, Ethan would always come busting out the doors to run and find me.

Which brings me to my next concern. Not one time did a teacher follow him. I would meet him halfway, fully expecting Ms. Kathleen to come out and make sure he didn't run out into the parking lot or atleast to see if I were even still there. But I'd return him to the room where Ms. Kathleen and her assistant (who wasn't there on the first day) were sitting in circle time with all the other kids. I know you can't leave a classroom of 2 and 3 year olds unattended to chase after another one, but come on, if I'm going to leave my child in your care, I need to feel that they are safe.

And call me crazy, but you can't tell me that my kid is the only 2 year old that ever cries and tries to run after their mom or dad. It would've helped out A LOT if the teacher had intervened and given Ethan a little "pep-talk" about all of the fun things they were going to do today. Instead, I felt like I was fighting the battle on my own. I left pretty much feeling like they could care less if Ethan stayed or not. It's the first time he's really gone into a setting like this. Would it be too much to ask for the teacher to try and make him feel welcome there?

Ugh. I'm hoping that I can discuss my concerns with Ms. Kathleen on Thursday and that Ethan will cooperate. I really think he will thrive in a school setting once he feels comfortable there. But I also think a lot of that depends upon the teacher who takes on the task. I hope it all works out!

Preschool: Day 2

As you all know, Ethan started preschool on Tuesday. On that day I was all: 'Awww - you are so cute with your back pack on sweetie. Say cheese!' And when I went to pick him up I was all: 'Ooohhh - show me your wonderful artwork'

Well my friends - preschool day 2 went much differently. Either Ethan put on a good act for Ms. Kathleen on Tuesday or sweet Ms. Kathleen is one of those teachers that tells all the parents the kids were "so good" when in reality they were little hellions.

Today, the preschool director filled in for Ms. Kathleen (her daughter was having ear tube surgery) and when I went in to the classroom to pick Ethan up the director surprised me with her stern "We need to have a talk about Ethan's behavior".

I immediately felt my face get flushed as the other parents were skipping past us all 'Kissy kissy honey, how was school today?' while shooting me an 'I'm sooo glad I'm not you' look.

She got down to eye level with Ethan and asked him "How many times were you on the naughty mat today?" He mumbled something that I'm certain was not "1" as he hung his head.

Ms. I-look-like-I'm-just-out-of-high-school then stood up and proceeded to give me the run down.

"Ethan threw mulch during outside playtime and put it in his hair and in the hair of another child," she said. "Then during craft time, I asked everyone to stop cutting their paper, but Ethan didn't listen - he just kept right on cutting until I finally had to take the scissors away," she continued with a big frown.

I'm a little ashamed to admit that my first thoughts were: 'Oh come on - he's a boy. A TWO-YEAR-OLD BOY. If you take him outside, of course he's going to throw mulch. If you give him scissors, of course he's going to want to cut.'

But I quickly realized that some of the things that Ethan does to wreck havoc around the house just aren't going to fly here at preschool. So I suppressed the small little urge I had to defend my child.

And then suddenly, I started to feel like a failure as a mother. I mean really - IT'S JUST THE SECOND DAY OF PRESCHOOL and my son is "that kid". The bad one. The one that all of the teachers are going to dread having in their class and all of the kids are going to be scared of. The one that other parents will get a small parenting ego-push when they hear 'what that little Ethan did today'.

Okay so maybe I was getting a little carried away. I quickly urged that feeling away just the same. I mean, I refuse to let myself feel that way. I know that I'm doing a good job raising my kids. Will they be perfect? Heck no. Are they always going to listen to the teacher? Nope.

But now more than ever, I am aware of the great responsibility I have to shape my children into good people. Teach them right from wrong. When to listen and when to talk. How to share. How to make friends. How to learn.

Welcome to Preschool...Here's hoping we make it through Day 3!

PS - For all of you that are telling me to write MORE MORE MORE, you're in luck. I'm sure I will have plenty to write about now! Just check back every Tuesday and Thursday afternoon. :)

Rewind...an update on Aiden's eye surgery

With the craziness that was this past weekend, I completely forgot to update everyone after Aiden's eye surgery last Wednesday.

Everything went well. It was really a very short procedure and he bounced back to his good ol' happy self within 24 hours after we left the hospital.

Aiden had surgery on his right eye to repair and strengthen an eye muscle that was causing some mild strabismus (where the eye veers off in one direction or the other due to lack of muscle strength). This condition is quite common, and the majority of kids with Apert Syndrome require surgery to address the issue. The procedure is very routine and only takes about 30-40 minutes.

We didn't have to travel to Dallas for this surgery, rather it was done locally at Kosair Children's Hospital. They gave him the "goofy juice" and we held him as he got a little...goofy. After the took him back for the operation, Ricky and I headed to the waiting room. I barely got through making my grocery list when they called our name. We immediately thought something was wrong as it had seemed like they had just taken him back. In reality, the surgery was over. I guess we're used to the 5+ hour surgeries and all of the waiting that comes along with it.

We talked with the doctor who said that everything went well, then met Aiden in the recovery area. He drank some fluids, we got him dressed and we were on our way! Short and simple. No bandages. No pain medicine. Just some eye ointment for a week and that was it.

So happy that it is over with and we can once again look forward to going a few years without any surgeries (of course I won't hold my breath...it seems like something always comes up). But for now, I want to stay away from hospitals!!!!

1st Day of Preschool!

I am happy to report that Ethan did great on his first day of preschool! He has been so excited about it for the last few months - we've been talking about it, reading books about going to school and telling him stories about what happens at preschool.

But you know how that goes, some kids get really excited and you think they'll do great, but when the day actually comes they get super shy and want nothing to do with it. Not Ethan!

He is normally not a morning person. This morning was an exception. He woke up in a great mood and wanted to hurry up and get ready for school.

We picked out his clothes, packed up his backpack (he brought along two special friends in case he got scared) and ate some breakfast while I did my motherly duty of marking "Skees" on all of his belongings using a Sharpie. And out the door we went.

Ricky got to come along with us to drop him off at the YMCA. He couldn't wait to get there and once we did, he started chanting "Preschool, Preschool, Preschool"!

Because we were out of town at the end of last week through the weekend for Angie's wedding (more on that later), we missed the "Come meet your teacher and see your classroom" day on Friday. So we got there a little early for introductions and to check things out.

We met Ms. Kathleen. We found his name tag and his little hook for his backpack. Then Ethan took off into the room to see all of the cool things he was going to get to play with. And with that, he pretty much could have cared less if we left, so we did.

Aiden and I had breakfast at Chik-fil-a (mmmm...chik'n minis!) and killed some time in the play area. Then we drove to the other YMCA in Floyd Co. so I could try to get a workout in since the one where Ethan's class was being held was closed for cleaning. However all of this fell smack dab in the middle of Aiden's nap time so they came to get me because he was crying. Then we just drove around for a bit and I let him sleep in the car until it was time to pick up Ethan.

When I went in to get him after the 3 hours were over, Ethan ran right past me to his basket where they keep the things that they made throughout the day.

He proudly presented me with what were clearly masterpieces - the cutest little fish bowl craft and a paper with the letter "A" scribbled in with blue crayon. Something tells me he could be the next Picasso...

So - the day was a success. After a quick lunch and an episode of Imagination Movers, both boys are now napping peacefully. I think I'm going to like this preschool thing ;) More pics here.

And so it continues...

There doesn't seem to be any "down time" in our crazy schedule until mid-October. And then...the holidays are upon us!

I know, I know, who isn't busy these days? And to be honest, I find it a little easier to have a lot of things on our calendar than to be sitting at home fighting with my kids about taking naps, trying to explain to Ethan that having 6 suckers in one day will have the dentist knocking at my door, and keeping them entertained with way more than acceptable amounts of PBS Sprout television shows. Sometimes its just better to be on the move. And they seem to enjoy it too.

So what's coming up for the Skees family you ask?
  • My cousin Angie's wedding this weekend (I'm a bridesmaid) and possibly the arrival of her sister Joy's baby??? Please????
  • Bachelorette party and bridal shower for my friend Jen next weekend
  • Leaving for California to attend Alexa's Appeal on Sept. 12 (with an extended mini-vacation for me while Ricky turns it into a work trip)
  • 10-year High School reunion Sept. 19
  • My birthday on the 21st
  • Trip to NKY to spend some time with my family while Ricky is away on business
  • Another cousin's wedding (Nick) the last weekend in Sept.
  • Jen's wedding the following weekend (I'm a bridesmaid)
  • A weekend trip to enjoy Michigan in the fall
  • And a weenie roast at Audrey and Todd's mid-October
"Seriously" you ask? Yes, seriously.
More than anything, I feel blessed to have such wonderful family and friends to share all of these very special moments with (and who also help keep me sane!) You all know who you are. I couldn't do any of it without you :)

Michigan!

My family has spent at least a week up at "Poppy's house" in Michigan every year since before I was even born. My grandfather (whom we called Poppy) bought this cottage many years ago as a summer home. After he passed away in 2005, just 2 months before I was married, the house was given to his children so that our families could continue to make memories there for years to come.

I look forward to spending time there for many reasons. It is 5+ acres of serene space with areas of trees, a large field where the kids play baseball or tag, a sand pile that Poppy had dumped for his grandkids to play and dig in, a pool and a cozy little house that has expanded with additions here and there over the years. And it is just a short walk across the street to County Park and beach access on Lake Michigan.

It is a place that I am grateful to have in our life. It is a place that I will always cherish - as well as the many memories made while Poppy was still here to enjoy it. It is a place that I will bring my family and feel at home. Thank you Poppy!

Here are some pictures from our trip at the beginning of August. We had so much fun picking blueberries, playing at Deanna's Playhouse, at the beach, and around the house. Anyone can see the excitement in the eyes of the kids while spending time there. It makes my heart ~ SMILE ~.

Nothing runs like a Deere

A few weeks ago we went to a pizza party at The Wolff's house. It was so nice to spend some time hanging out with old highschool friends and everyone's families (the group gets larger by the minute!)

One of the highlights of Ethan's time there was riding around their front yard in one of those battery-operated car thingys. He had no fear and tore around the yard without regard for small trees, bushes or flowers (sorry Heather and Nate!) I think he about scared the wits out of Katie and Brad's son Blake. Their faces were priceless.

We decided to see if we could find something similar to get for Ethan. Ricky looked on Craigslist and sure enough, he found a John Deere one for an unbeatable price. He had to drive all the way to Oldham Co. to pick it up but the unveiling of it yesterday made the cost and the drive well worth it. (Although I think Ricky was more excited to give it to him than Ethan was to get it!)

Both Ethan and Aiden had an absolute BLAST riding around the yard. At first I stayed close to Aiden's side, who immediately grabbed the handlebar in front of him anxious for the ride. With no seatbelts - and no predictability in Ethan's driving skills - I wanted to be sure that 1. Aiden wasn't scared to death and 2. Aiden didn't fall out at any point.

But he flashed me a look like
"Get away mom, I'm fine"
(seriously? he's not even two!) so I retreated a little and let them ride off into the sunset (sniffle. sniffle.) My boys are growing up...

And guess what - they were both fine. Aiden's amazing little hands gripped onto that bar as the two of them bounced around and laughed wildly. He didn't fall out.

It was so much fun watching my two boys play together. Now we'll just need to help Ethan with the whole steering thing. Almost a 1 acre wide open front yard and he finds a tree to run into...

Little Fire Big Heart


A lot of progress has been made in the planning of our first annual benefit for CCA! I've named it "Little Fire Big Heart" and have created an event website where people can find information about the event, read Aiden's story and register for tickets.

We've received our formal approval letter from CCA which means we can begin soliciting for event sponsors as well as start collecting all of the wonderful items that will make up the silent auction.

So if you, your company, or anyone you know would like to contribute in any way, PLEASE PLEASE PLEASE let me know! Our fundraising goal is $10,000 so every little bit helps - whether it is your monetary donation or items that you would be willing to donate for the auction. I have all of the appropriate event info and tax forms for any interested sponsors/donors - just send me an email at tarynskees@gmail.com and I will forward on everything you need.

Please forward the event website to anyone who might be interested in attending or contributing.

And don't forget to register for your tickets! There will only be 250 sold. I know it is a ways off, but they will go fast! Register today!

* A special thanks to Jeremy Roberts for creating the
Little Fire Big Heart logo and website banner!

Quick hearing update on Aiden

Aiden had his follow-up Behavioral Auditory Evaluation (he gets them every 6 months) to check for any hearing issues. Generally kids with Apert Syndrome get recurrent ear infections and fluid build up that may impact their ability to hear normally. Aiden has had his share of infections, but he did have ear tubes placed during his head surgery in May to help alleviate the problem. And luckily, the evaluation yesterday at Kosair showed absolutely no hearing loss!!!!

The tube in his right ear has already come out (usually doesn't happen for about a year), however it doesn't seem to be causing a problem. Aiden passed both the behavioral portion of the exam as well as the tympanogram (sp?) with flying colors. What a huge relief! They will continue to retest every 6 months to monitor things as he grows.

Joy's baby shower


Our girls weekend started out with Joy's baby shower last Saturday at Nonnie's Pizza in Woodridge, IL. Joy was absolutely glowing (she couldn't get any cuter, could she?) Pregnancy definitely suits her well.

About 35 people came out to celebrate with us. To start we had each guest decorate a plain white bib using fabric markers and stencils. We ate great food, played a few of the required baby shower games for prizes (Celebrity Baby Name quiz and Baby Word scramble). And then Joy chose her favorite bib and the person who made it won the final prize give-away.

I think everyone had a great time - and Joy left Nonnie's with THREE carloads of baby essentials. The cutest personalized onesie, handmade blankets, baby booties, the newest and best baby gear, etc. Joy and baby Brogan are all set! Now we just have to wait for him to make his debut! Click here for more pictures from the shower.

>>> Angie's bachelorette party was that night - more on that, including pictures (well, the G-rated ones anyway;) to come! <<<

Too cool

Ethan insisted on wearing his sunglasses to bed the other night. That's just how he rolls.



Aiden thought it was so hilarious, he blogged about it the next day.

The kindness of children

** This is a "guest post" by my husband, Ricky. He played Mr. Mom this past weekend while I was in Michigan and Chicago and he did a really great job. How many moms can say that their husbands venture out with two young kids under 3 years old BY HIMSELF, taking them to the zoo, shopping, and to a park (while also managing to clean the house for a showing)???!!! I'm so proud of him! And am so happy that the boys shared such a wonderful time with their daddy. **

I felt the need to share this story. Every once in a while you get an insight into the openness and acceptance that kids have for one another.

Taryn was out of town this weekend so it was me and the 2 monsters. To keep them occupied, I took them to the park on Sunday. I picked a park I thought nobody would be at so that Aiden could try and climb all over the place without other kids running over him. We played and had lunch for about an hour, just us three. Aiden was crawling all over the playground and going through the tunnels. He actually went down the slide twice by himself - big step for him.

A little later, two boys and their parents showed up. One was 8 and one 11. I thought they wouldn't want much to do with two "babies", but the 8 year old was really good with and talked to Aiden a lot.

Ethan, being the social guy he is, walked up and said "What's your name?" The boy responded "Noah". Then Ethan continued, "I'm Ethan, this is daddy and that is my brother Aiden. Be careful with him, he's my brother."

Another 10 minutes pass and I notice that both boys, but mostly Noah, are really looking at Aiden's hands. Noah asked why Aiden's fingers are so swollen. So I told him about how Aiden's hands looked when he was born and that we travel to Dallas for surgeries. He asked if they would always be so swollen or if they would one day look like his. I told him they would look less swollen, but would always look different, but that it's okay because we are all born different. He then said "I'm glad they will look better. I don't want him to have to walk around like that."

I just thought that was the sweetest thing. The kids didn't say "His hands look weird - yuck" or "His fingers are disgusting", they were so nice and genuine.

About 5 minutes later, Noah asked "Why is his index finger so crooked? I can't even get mine to do that". I explained that since his fingers were at one point all stuck together, it grew like that but that the doctors were going to fix it in a few years. He said "That's good, but it doesn't matter because he is still the cutest baby in the whole world."

And we agree :)

Summer Fun

Just a couple of days after returning from Dallas, we turned around and headed out the door once again. This time, we loaded into my parent's van and drove to our family house in Michigan. The 5 hour drive with my mom, dad, both boys and my niece Lilly was not too relaxing - but was well worth it once we got to the fresh Michigan air. Despite temperatures in the 60's!!!! and not a ray of sunshine most of the week, we all still had a great time.

Ethan absolutely loves to play outside - especially at "Poppy's House" where he can dig in the great big sand pile, go for tractor rides, play ball in the field and swim in the pool (which we finally got to do the second to last day we were there once the weather cooperated). He wore himself out playing with his cousins Katie, Brendan and Sean. So much so that he would fall asleep in the strangest of places! Once at the kitchen counter during dinner - I'm talking food in hand and mouth, head bobbing from left to right asleep. And once at the 4th of July parade - got down on the towel laid out in the street to retrieve some dropped candy and zonked out for a good 2 minutes! I've got pictures from the parade episode to prove it :)

Something we have never done in all of the 28 years that I've been going up to Michigan was go to Chuck E Cheese's. The kids really enjoyed it and heck, we had to get creative when the cool temps and lack of sunshine didn't exactly make it ideal conditions for outdoor activities all day long.

Aiden really loved it this year. Last years trip he ended up getting his first case of bronchiolitis while there and we spent July 4th 2008 at the Holland Michigan Hospital. Not fun. But this year, even with the cooler weather, he held up great! Although we didn't introduce him to the sand or pool yet. Maybe our next trip in August.

Finally - we got back to NKY on Sunday and then my mom and I took the boys to Kings Island on Monday before I finally headed home sweet home with them that afternoon.

Here are some of the pictures...enjoy!