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I admit - I've been totally slacking on updating and posting new pictures. I finally hunkered down and got caught up. So...if you can handle the cuteness...click the links below!
I borrowed this from a friend's blog. Carly and Jay have beautiful twin girls. One of them was born with a rare condition known as Holoprosencephaly (HPE). She pulled this from one of the support pages on Facebook for families with that particular condition: Families For HoPE.
Having a support network has been such a blessing for me and my family. I, along with Carly, often look for encouragement and motivation from others who are able to put into words what we sometimes cannot. It may seem small, but when someone is able to capture a feeling to which I can relate, or an idea that I support, or even a message that I wish I could get through to others, it actually has a very significant impact on my life. Pieces like the below provide honest perspective. Thanks for sharing this with me Carly!
SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.
Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.
The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
Another fun family outing while in Florida was setting sail on Captain Memo's Pirate Ship. Aiden stayed back at the condo with Nana to nurse his bronchitis, ear infections, and general case of the miseries while Ricky and I took Ethan to hang out with the pirates.
It's hard to believe that this 2 hour cruise for the three of us cost more than our entire day at Disney (our admission to Disney was free because we completed a volunteer project a few weeks ago as part of the Give A Day, Get A Day program). But I will say that it was worth the price. Ethan had an absolute ball hanging with the pirates and playing with the other kids aboard the ship. They did a great job catering to families - games, water gun fights, treasure hunts for the kids...free beer and wine for the adults!
It was our last full day of vacation and the perfect finish!
We were so very lucky to be able to do some pretty cool things on our vacation. My uncle Kenny has a place in Tampa and met up with us at one of the beautiful Florida State Parks to take us on a canoe trip down a little river running out of the Bay. We were on the lookout for alligators - and since Kenny had frequented this park, he knew where most of their resting spots were along the bank. I have to admit I was a little nervous about this excursion, but I put on my brave face and went along for the ride. I had only one request - to paddle with Kenny (not my husband or my dad)...not that I didn't trust them, but well, okay I didn't trust them. :) I wanted to be with the most experienced of the bunch. We even brought Ethan along too! He thought it was pretty cool although it took him a little while to find and focus on the gators that blended so well with the grass, mud and water.
We recently returned home from our wonderful (and much needed) family vacation to Florida where we stayed with my parents in their beachfront condo in Clearwater. They are renting for 2 months and invited all of their kids and grandkids down to visit. Because it is only 2 bedrooms, my sister and I decided to overlap our stays, allowing us the chance to go to Disney World together but not having to deal with cramped quarters for an entire week.
Two years ago, my parents decided to splurge and rent a condo on Clearwater Beach in Florida for the month of February. My sister and I were both pregnant - she was due in January and I was due in March. Avery came when expected - January 11. Aiden, on the other hand, came a bit early and with his surprise diagnosis of Apert Syndrome, caused quite a stir in our family. Especially since my mom and dad wanted desperately to be there for me to comfort us during this difficult time. They thought their February trip was well-planned around our due dates. Unfortunately, mother nature had a different plan and unfortunately they were not able to be there to hold my hand and cry with me. Instead, they heard the news with a phone call on February 11, with waves crashing in the background. They raced to book a flight to Louisville to be with us.
Last year, my parents didn't make the trip to Florida. They didn't want to miss Avery and Aiden's 1st birthdays. But this year - with no pregnancies and no ultra-important dates to keep them from going - they decided to rent again, this time for 2 months. They invited us to come down with our family. Of course, we jumped at the chance.
They rented the exact same unit in the exact same building where they stayed 2 years ago. As we touched down in Tampa and drove to the condo, I couldn't help but begin thinking about the night we called to let them know of Aiden's arrival. After we threw open the door, after we were greeted by my parents, my sister and brother-in-law, and their two girls, and after we ran down to the beach to feel the sand in our toes - after all of those moments settled, I looked around the beautiful condo and felt a wave of emotion.
I wanted to know where my parents were standing when they got the news. I had to picture it. Live it. Again. I wanted to know what room they went to to cry. Out on the balcony to let the waves drown out their thoughts and fears? In the salmon colored bedroom swallowed up in the down comforter? It was strange being there. They said they felt the same resurgence of emotion as they walked in the first day. But then, we caught a glimpse of Aiden, almost 2, tearing through the place like any 2 year old would. Touching the wooden fish decorations under the glass top coffee table. Running from end to end of the balcony.
And we realized...The same waves from the same ocean rolled in just as they did 2 years ago - yet, this time, the fears that crashed into the shore that night with every wave have now subsided. Instead we were able to relish the moment in amazement and wonder at how well Aiden is doing today.
When I was in elementary school I caught the bus at the corner of Creekwood and North Colony every morning. And on my bus there was a boy that was ridiculed on a daily basis.
He was quiet. Shy? Maybe. More likely he was just conscious of the ridicule and decided not to "put himself out there" by showing the more real parts of him. While I don't pretend to be the most non-judgmental person in the world, I will say that I was drawn to this boy. I wasn't sure why at the time, but it is now very clear that this was part of God's plan. Part of His way of developing me into the person that I have become. The person that I needed to be.
He was quite a bit older than me - I was maybe in 2nd or 3rd grade, he in 5th or 6th. I remember someone asking him what he was going to dress up as for Halloween, hoping he would reply with something that would give them reason to make fun of him. He was unaware of the prodding and before he could respond, I flipped around in my seat and said to the other kids on bus 236, also older than me, "Just leave him alone." I surprised myself just as much as I think I surprised him and the rest of the children.
Even though I had once sat a few rows up from this same boy at the start of the school year and whispered with my friend from down the street about his speech impediment and odd, gangly stature, I had suddenly realized that my gut was telling me it felt wrong to do so. I felt compelled to stick up for him.
This incident on the bus has stayed with me for many years (obviously - I'm still talking about it today!) and now I know why. What I didn't know then was that I would eventually be given the very important task of raising a child much like the boy on the bus. A child that is different.
I often find myself obsessing over what Aiden will encounter in his school years. How many times will he be ridiculed for the way his hands look or the facial differences that will become more apparent as he grows? I wonder what I can do to make his road easier. Can I do something to educate people about Apert Syndrome so that it will be more accepted? What about simply educating people about differences in general - teaching them to appreciate, acknowledge, accept what is different rather than belittle, ostracize and embarrass.
I know it is an ambitious goal. And ironically, I write this on Martin Luther King Jr. Day. A day that honors the dreams that Dr. King dreamed as well. Of a world that accepts people for their differences.
Most people can relate to my journey in some form or another. At some point in our lives, most of us will encounter adversity. It is my goal to give people a glimpse into what it is like to have a child that "looks different". If I can make people understand by sharing this ride then I am doing a small part. And if I can open people's eyes by making them appreciate their lives while also accepting those that might have a tougher road, unfortunately, due to the way they look, then I am one step closer to providing the life for my child that I want him to have. The life that he deserves.
Many people have asked what they can do to help. And while I am so very grateful to those who have offered support monetarily for the event we're organizing for CCA, I also want to remind everyone that perhaps the more important gift to give our family is that of spreading awareness. Share this blog with others. Send your friends and family a link about Apert Syndrome (see the link on the menu bar at the top). Point people in the direction of Apert.org or ccakids.com to help people learn about craniofacial conditions. Hopefully then, if they encounter someone with a craniofacial condition, rather than turning away to keep themselves from staring, they might feel brave enough - educated enough - to smile or start a conversation. To ask how their day is going. To treat them with the same respect that would be granted any other individual.
My purpose in life as a mother is much more clear than it ever was before. After much fear and reluctance, I readily accept this challenge. And I am starting to see how there are many aspects of my life that have unknowingly prepared me. I am grateful. I challenge you all to think about how your life would be affected if you were "raising different" too. How would you feel if your child was that boy on the bus. Wouldn't you want someone to stick up for him too? Food for thought.
Yes, I know, it is the 2nd week of January and I'm just now getting around to writing about Christmas. My excuse? Spending this year without worrying about surgeries, surgery preparation, recovering, germs, etc. was thoroughly enjoyable. We were very much into the holiday spirit this year and I just wanted to soak up every minute. And honestly between opening the kids toys that littered the living room floor for days (and cursing the darn things that are harder to open than the vault at Ft. Knox), stepping over the unpacked suitcases and finding the motivation to un-decorate - all I wanted to do was...well, nothing.
But it is now the 12th. The Christmas decorations are all a distant memory. The new toys have found a corner in the toy room to occupy. As for the suitcases, they have yet to be unpacked from the many trips we've taken over the past few weeks. Oh well.
Christmas this year really was magical. It was so much fun witnessing the twinkle in the boys' eyes each night as Ethan would ask "Is tonight the night Santa comes? Is it mommy? Yet?" I'd point to the books that remained unread in our "Countdown to Christmas" bucket, prompting him to count each one and declare how many were left.
St. Nick was a little confused, making his quiet appearance a few days late (oops ;). But as promised, he brought matching red and green Mickey pajamas for the boys to wear on Christmas Eve - a perfect find considering our upcoming trip to Disney. (That St. Nick always has been a good shopper!) And he filled our shoes with small goodies to enjoy.
A few days before Christmas the boys and I collected a few gently used toys from their play room, sanitized and bagged them, and delivered them as a family to St. Joseph's Childrens Home in Louisville. Ethan was very excited to "share" with kids who might not get many toys for Christmas. We hope to do this every year.
The boys awoke on Christmas Eve morning with tons of energy in anticipation of all of the fun things ahead. We relaxed a bit, enjoying the calm before the storm, then headed to my grandma's condo in Louisville. It has been a family tradition to spend Christmas Eve with my dad's side of the family and I'm so happy that we've been able to continue to do so even now that I have a family of my own. Although it could have started out a little better. No sooner than we walked into her place did Aiden "explode" through his holiday attire. Luckily, with some quick thinking, I was able to toss his clothes into my grandma's washer to get them clean and dry before we left there for church.
Last year, Christmas Eve mass was a joke. The boys wanted nothing to do with sitting still so after Ricky was dripping with sweat from wrangling our little monkeys as best he could we realized it was hopeless and made our exit before the choir even finished their pre-mass numbers. This year, I'm happy to report that even with an entire pew filled with just our family (Ricky's parents, sisters, their spouses and all of our kids ages 1, 1, 2, 2, 4 and 6), we were able to stay until the end. They were actually pretty good. Ask the people seated near us and you might get a different story. :) After church we went back to 
Ricky's mom and dad's for food and opening presents. It was "organized chaos", but all in all a lot of fun.
When we got home and tucked the boys snug in their beds the fun for Ricky and I began. Once the gifts were placed around the tree we made a drink, took some pictures and then exchanged our gifts to each other. Ricky usually gets too excited to wait until Christmas morning, and we agreed that it is kind of nice to have the time to ourselves to do this so we can focus on the kids in the morning.
At the surprisingly "late" time of 7:15am, Ethan yelled for us from his room. We grabbed the camera, woke Aiden up and headed downstairs to see if Santa had come.
"He did! He did! Santa came Mommy and Daddy!" Ethan could barely contain his excitement. Aiden clapped and ran to the Thomas Train ride-on toy that took up half the living room. We could barely pry him off of that thing to open the other presents under the tree! Last but not least we led them to the basement toy room to see their new Thomas train table handmade by the brother-in-law of my Aunt Susan and Uncle Chris. It was the perfect end to a perfect morning.
We then loaded up the car and drove to Northern Kentucky to my parents' house where we got to do it all over again!
We feel so blessed to be able to enjoy the holidays with our family. We feel so relieved to be able to do it all this year without the stress and anticipation of surgeries and hospitals. We are so very lucky!
I know I've got a lot of catching up to do - so I'm going to start with the most important subject matter...an update from my most recent trip to Dallas with Aiden...
Aiden has had 5 major surgeries since his birth. Four of the 5 have been with the team of specialists in Dallas at the Craniofacial Center in Medical City (the other one was a strabismus surgery done locally). With these major surgeries out of the way, and no others on the horizon, our visits to Dallas will now be on an annual basis for a sleep study, an MRI and head growth measurements.
Monday morning, bright and early, Aiden and I flew to Dallas for the first of these annual visits. The last trip there was back in June for a post-op visit following his cranial vault and ear tube placement. It seems odd to say this, but having the frequent visits throughout the last 18 months, although not really fun, offered some reassurance as to Aiden's development and overall health as related to his syndrome. So, having to go from June to January was quite different. Even stressful at times. As we had no validation that everything was "okay" other than his regular pediatrician appointments - which are great, but as a parent dealing with a child with a rare syndrome, I tend to err on the side of caution and need the extra reassurance of the expert in the field (his team in Dallas).
We arrived at DFW and were met by our good friend April and her two absolutely adorable kids John and Rory Cate who brought us a car seat loaner for our rental car. We then headed to their house to let the kids play. She treated us to homemade chili and cornbread before Aiden and I had to get to the hospital to register for his sleep study that night.
The next morning we checked into a hotel (poor Rory Cate got sick the previous evening after we left and we didn't want to take any chances getting Aiden sick as well, otherwise we would have stayed with the Gorman's like they offered). I had just enough time to give Aiden a bath to scrape all the goop off of his head that they used to hold the probes on for the sleep study, and somehow managed to grab a shower myself, before we turned around and headed straight back to the hospital for his MRI.
A few good breaths of the inahaled sedative and Aiden was ready for his test. It only took about 35 minutes and then I was able to hold him as he "came to" as the sedation wore off. The results, we were told, would be ready for Dr. Fearon to share with us during our appointment with him at 4pm. Ugh - what a long wait that was!
Meanwhile, we breezed through 3 more scheduled visits: one with the anthropologist who takes measurements of Aiden's noggin to follow the growth and development of his head shape and size, another with "Media and Photography" where they snap photos of his head from the front, the top, and the side, and also of his hands and feet, and finally a quick stop to an ENT to discuss the function of his ear tubes placed last May.
It was confirmed during our visit with Dr. Kolar, the anthropologist, that Aiden's left brow/orbital rim is lower than his right, making it appear that his left eye is smaller (or droops) to some extent. I had him compare the measurements from Aiden's post-op visit last June to those he was currently taking and it was determined that the difference in measurement had in fact increased durint that time period. This means that growth in that particular region differs in degree on the left than on the right. Dr. Fearon was able to explain more...so I'll give more info when I get to that point.
The pictures went fine. He was not afraid of the camera, just of the headband that they needed him to wear to pull the hair off of his forehead. He was not a fan. But a just a couple minutes later we were finished.
Good news at the ENT. Even though his left ear tube had fallen out just a month after it was placed, it appears that his ears had no fluid and no infection at the time of that visit. The right tube was still in place, but was blocked, which Dr. Peters said didn't show to be causing any problems for the time being. He does not think we need to replace the missing tube. And he even mentioned that at this point, it seems Aiden has "outgrown" the need for tubes in the future. He mentioned that Aiden is on the more mild side as far as Apert syndrome is concerned (which we knew, but it is still good to hear). And when I asked him about my concerns with Aiden's speech and how it might be related to any ear issues, he said he is confident that based on his examination, his speech development shouldn't be inhibited as his anatomy looks great and his ears are functioning properly. (So any speech issues are either simply a developmental difference or may be because of his high-arched palatte, related to his syndrome).
Finally, the all important appointment time came. Aiden was full of energy waiting for Dr. Fearon in his office. And when he came out to greet us, Aiden didn't hesitate to explore every nook and cranny of that place. He immediately found the toys Dr. F keeps on a table in his office and headed straight for them. He attempted to sneak past him to get to his computer. He pulled books off his shelf. Dr. Fearon was clearly impressed with his development as his first words were - "Wow, he really seems to be doing GREAT". That's my Aiden :)
And next, a huge weight was lifted from my shoulders. Dr. Fearon said "All of his test results came back GREAT". He continued to explain that his sleep study showed 6 central apneas (where the brain forgets to tell the body to breathe), but that up to 10 apneas is considered within the "normal" range. So no issues there. The MRI showed no evidence of pressure in the brain, no chiari malformation, ventricles appeared to be normal size. One thing he did find was a small arachnoid cyst near the cerebellum. This scared me a bit, but he reassured me that he is not worried about it in the least. Essentially it is a small benign growth, kind of like a mole, that presents no problem in the majority of cases. It doesn't require treatment (unless it later becomes troublesome by causing headaches or other symptoms). In fact, he said he was so pleased with everything that rather than schedule our next visit for one year later, he was comfortable waiting 18 MONTHS! AND...HE EXPECTS NO SURGERY WILL BE NEEDED FOR YEARS!!!! Yes, I said YEARS! That is quite a relief considering he's had 5 in a 7 month period during the last year and half!
So what does Aiden's future hold? Dr. Fearon explained that Aiden will need another cranial vault, and mostly likely will need an additional one after that. This is because as he continues to grow, the brain still needs extra space that because of the fusion of the sutures in his head, requires surgery to ensure that the right amount of space is there. He will also need to have his midface advancement surgery ideally around age 8. This is where he will have a large metal device attached to his skull with pins that will slowly extend the portion of his face from his brow bone to his upper jaw forward with the turn of a screw (we will be turning the screw from home on a daily basis over a 6 week period...yuck). But we will cross that bridge when we get there. Finally, during the next surgery - whether it be a cranial vault or during the midface surgery to attach the device - he will, at the same time, correct the difference in growth of the left vs. right side of the brow bones that mentioned earlier, straighten his right index finger that is severely turned, fix the regrowth of some skin between two of his fingers, and deepen the spaces between his big toes and the toe next to it.
Despite this laundry list of "maintenance" that needs to be done, all in all, great news. NO SURGERIES FOR YEARS!!!! As we soared through the air on the flight home, I was definitely on cloud 9. I will admit that a part of me couldn't get the whole arachnoid cyst off my mind, which led to a consultation with Dr. Google (not usually a good idea in most situations, unless you want to be freaked out with very inconsistent information and typically worst-case scenarios). It did prompt me to send an email to Dr. F asking more questions about it. I have not yet heard back, but when I do, I will let everyone know what he says.
Once again, I can't thank everyone enough for all of the thoughts and prayers throughout our journey. There are so many people out there pulling for our little guy, some that I know of and others that I may not even know, and we truly appreciate it from the bottom of our hearts. It's working!!!! So keep 'em coming!!!
Lots to say about Christmas, our New Year's Eve party, trip to Dallas, my New Year resolutions, house selling update (no, it isn't sold yet), and info on the progress of Little Fire Big Heart. Plus, lots of picture updates!
But first things first - I've got to clean the house and get myself organized.
(Funny how Ricky can be gone oon a work trip and I can clean the house, care for the boys, pay the bills, sort the mail, do fourteen loads of laundry, etc....yet I come home to the same crumbs on the kitchen counter and the same pile of clean clothes waiting to be folded on the couch. Yeah...real funny. Guess the jokes on me!)
PS - I love you anyway honey :)
Ethan can usually be heard throughout the house at all times of the day. Whether its his jibber-jabber or his rendition of "Twinkle Twinkle", he's constantly talking. Or singing.
He's not really camera shy. But this particular performance must have worn him out as he pleads with me not to make him sing it again at the end.
All I can say is watch out Justin. The boy can sing. And he's got some moves...I've just yet to get those on camera (cause I'm usually too busy laughing my a** off)!
(Click on the play button to see the videos. But before you do, scroll down to the bottom of my blog and press the pause button on the music playlist. That way you will be able to hear him singing.)
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? :)
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 :)
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.
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.
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 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".
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.
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.
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.
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.
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. :)
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.
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.
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. :)
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!
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.
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 :)
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.
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!
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. :)
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 :)
Read more...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:
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!
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 Ms. I-look-like-I'm-just-out-of-highschool 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. :)
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!!!!
Where do I begin? This weekend was one that I will certainly NEVER forget. Then again, you really can't expect anything less from the Cozzie side of the family. We know how to party and we know how to make an impression. That's a long known fact.
But really. Get ahold of this...
Ricky and I drove up to Chicago (the Western Suburbs actually - Downers Grove to be exact) last Thursday evening with the boys. After the 6-hour drive up where the boys were actually pretty good, we finally made it to my aunt's house a little before 11pm Chicago time - which would have been 45 minutes earlier had I not gotten us lost at the very end...oh well. We made it.
My cousins Angie and Joy greeted us. Along with Cakie (what we call my aunt). Joy looked like the epitome of a glowing mom-to-be and Angie had the same glow as a bride-to-be. Little did we know what the next 24 hours had in store for us all.
Friday was the kickoff to Angie's wedding festivities. As soon as I woke up, I threw on some sweats and Angie and I headed out to wrap up some last minute wedding errands. We met with the wedding coordinator at the reception location, picked up the grooms cake, etc. Next we met my aunt, my mom, and Joy at a nail salon for our relaxing manicures and pedicures. Joy, Angie and I sat together discussing the wedding details. A very pregnant girl was also there getting her nails done. I asked how far along she was and she told us that she was due at the end of September, but was on bed rest and wasn't supposed to be out of the house. We all gasped and wished her well. (Hey, a girls got to have her nails done before the baby arrives...)
As we began swapping stories about babies being due and weddings approaching, that girl then proceeded to tell us that one of her bridesmaids went into labor the day of her wedding and missed the entire thing. We all looked over at Joy who immediately knocked on wood. (Well, what we thought was wood was really not...leading us to the next part of our story).
We all sat under the nail dryers waiting for everything to set when I noticed that Joy had made a pretty abrupt trip to the restroom. A few minutes later she emerged, looking a little flushed.
Joy and I started out to the car to wait for Angie to finish up inside. Joy turned to me and said "What was it like when your water broke?" I didn't even have to answer - deep down inside I knew this was it. When the bride-to-be got to the car, we changed the subject and headed to meet her fiance for lunch with the rest of the family.
Something told me that Joy needed to head to the doctor. I don't know if it was my weird pregnancy instinct or the extreme worry and uncomfortableness on Joy's face that gave it away, but when we got to the restaurant and were waiting for our table, I tapped her on the shoulder and said "Joy, you need to call your doctor". Out the door she went. The next thing I knew, Cakie (her mom) was being summoned to the parking lot. Then my mom started out. I ran out to find out what was going on. Joy had made it to her doctor's office to find out that yes, her water had broken. Now - how to tell her sister, whom was to be married THE NEXT DAY, that her sister, her maid-of-honor, was in labor.
I broke the news in an excited panic. Tim (Angie's fiance) just shrugged his shoulders, hung his head and laughed. A little word bubble was evident above his head "Of course", it said. Angie's face held shock, anxiety and happiness all mixed into one.
Plans were discussed over trying to finish up our pizza buffet lunch. But everything was a little blurred. Nobody really knew what to do or how to approach the rest of the weekend.
It was decided that the show must go on. The rehearsal would remain set for that evening. A trip to the hospital to visit Joy would be smushed in between checking into the hotel and getting ready for the night. Angie, my sister Lauren and myself headed to the hospital just a few hours before the rehearsal was set to begin. We stayed with Joy for about and hour, then had to be on our way. After all, labor can take hours!
We made it through the rehearsal. No baby Brogan. The rehearsal dinner ended. No baby Brogan. Back to the hotel for a good nights sleep and in the morning...no baby Brogan. Joy had now been in labor for a good 16 hours. Poor thing.
It was Angie's wedding day and all I could think about was when Brogan would make his debut. Would Cakie stay with Joy until she had the baby? Or would she make it to Angie's wedding that evening? The plan was that if Joy hadn't delivered by 3pm, my mom would be with Joy and Cakie would head back to get ready in time for Angie's big day.
We were all slipping on our bridesmaid dresses in Angie's hotel suite when the call came.
Brogan Patrick Rauen was born on Saturday, August 29 at around 1pm. After 24...TWENTY-FOUR...hours of labor. 8lbs. 3 oz. and healthy as can be. That's all anyone can ask for.
So the wedding frenzy began and both Cakie and my mom were able to make it in time for the ceremony. A beautiful evening it turned out to be as the clouds that hung around the previous two days parted to give way to a PERFECT sun-stricken sky just before Angie made her entrance. She was radiant. And although I'm sure she wished her sister could have been there by her side, you could tell that Angie was focused on marrying her best friend (and also as happy as could be as a brand new aunt).
The family partied like rock-stars that night. We had a lot to celebrate. And we did.
I will add pics later this week, including ones from Angie's surprise "gift" to her wedding guests - a photo booth. What a unique and absolutely AWESOME addition to the night.
Congratulations Angie and Tim. May your wedding weekend be a reminder that things don't always go as planned, but as long as you have each other, you will get through it all.
And of course, hugs and kisses to Joy on the birth of Brogan. You are an amazing woman who is stronger than you even know. Don't forget my advice about boys. And to call whenever you need to. :)
I LOVE MY FAMILY!!!!!!!
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.
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?
"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 :)
Read more...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 ~.
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...
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.
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.
** 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 :)
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!
After heading to NKY for my mom's surprise 59 1/2 birthday party last Saturday (more on that later), I stayed up there with the boys and we left for Dallas on Tuesday. My mom and sister came along this time to help out since we brought Ethan with us as well. This was his first time on an airplane so he was very excited (unlike his younger brother who is now a super-pro at flying)!
Ethan loved every minute of the flight. He was very good (because I was very good at keeping him occupied for the 2 hour trip). And Aiden, well, he enjoys making everyone on the plane nervous by fussing and kicking and crying...until the second that we pull away from the gate when he literally falls sound asleep. We always get "Wow, he was so good" comments when we land - probably because they were doubting it and grumbling under their breaths about having to fly with a cranky baby at first.
Once we landed at DFW, we picked up our friend's Honda Pilot left for us in the garage (how cool is that of them?!?! Thank you Gorman's!) Then we headed straight to Medical City for the first of Aiden's many appointments.
First we saw Dr. Kolar - the anthropologist - who took numerous measurements of Aiden's head and face. These measurements show growth patterns and change since his latest surgery, the cranial vault in May. It tells his doctors just how much the surgery helped (how much additional room was created for his brain to grow).
Next stop, media and photography. Photos are taken at each of our trips to Dallas pre- and post-surgery to record the growth and development of his hands, feet and head.
Then we saw Dr. Hung, the ENT, for a follow-up check from the tube placement he had during the cranial surgery. He confirmed that the tubes were still there and doing their job. All else looked well.
Finally, we met with Dr. Fearon, his fellow, and a visiting surgeon from Great Britain. We discussed his post-surgery progress and also plans for future visits. He said his incision healed exceptionally well and the forehead placement is near perfect. I had emailed him a few weeks ago about the fact that it seemed his left brow bone was a little lower than the right, and he noticed this right away during our visit. He said that he would fix it, a minor correction, during the next procedure. Which brought us to discuss when the next procedure would be...
Dr. Fearon said that with annual checks being the final determination of treatment plan, he didn't forsee any need for surgery until Aiden is about 5 years old at which time he will most likely require a posterior cranial vault - the same type of surgery he just had, however opening the back of the skull rather than the front.
Around the same timeframe, we would also be looking at scheduling his midface advancement using the RED (rigid external distraction) system. And he will also straighten his right index finger at that time as well.
So for now, it looks like we can rest easy for the next few years. Our only trips to Dallas will be for check-up visits for sleep studies and MRIs. The results of each will show if there is any need for the abovementioned surgeries to happen earlier than previously thought. We will return in February, then once a year thereafter. Great news!
After all the appointments were over, we met up with April, John and Rory Cate for dinner and playtime at the mall. Ethan and Aiden were completely exhausted - which meant they were not on their best behavior. We were able to squeeze an hour or so more out of them before heading back to the hotel where they both collapsed into their beds upon arrival.
The next morning, we went back to the mall (I mean come on, who needs to sight-see when we can go to Baby Gap?) From there we went to Great Wolf Lodge in Grapevine, TX for the start of the CCA retreat symposium. There were 4 sessions on Wednesday with talks by a clinical psychologist about Family Dynamics and Teasing, and by Dr. Fearon and Dr. Sacco (the neurosurgeon who worked with Dr. Fearon on Aiden's cranial vault) about Treatment of Craniofacial Disorders.
Afterwards we went back to the hotel for some pizza and swimming with the Gorman's. (I will upload pictures soon!)
Thursday morning it was back to Great Wolf for the conclusion of the symposium, lunch at Rainforest Cafe, then to the airport for our return to Northern Kentucky. It was a jam-packed 3 days that's for sure! I got to meet some amazing families at the symposium - kids with Aperts at various stages of their treatment (one little girl had just gotten her RED removed that week!), kids with Crouzon and Pfieffer Syndrome, Treacher Collins, frontonasal dysplasia, etc. It was a wonderful experience and I look forward to participating in the entire retreat (not just the symposium) next year in Boston.
And, 0nce again, I want to send a huge "Thank You" to April and Tate for their Texas hospitality. I can't wait to have them come visit us in our neck of the woods in the future!
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