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!)

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






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 :)






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.






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.






December 01, 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.






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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